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Friday, December 28, 2007 6:09 PM CST
Owen was able to have his spinal tap today. Dr. Cherrick said they generally will do these even with a cough due to the importance of them staying on schedule for them. Since his lungs sounded clear he was good to go. I had done counts yesterday and they were good. WBC 2.6 and ANC of 1500. Owen did great and was looking forward to the anestesia - loves how it makes him feel woozy... He said he was going to fight it and I had to stay and see how long it took. He did his best but it was a matter of seconds and he was out for the count! We saw an old freind of Owen's from 7H - he was just coming out of surgery - getting his port removed - he was done!!!! What an awesome Christmas present and New Years!! I think this gave Owen some encouragement to see a buddy finishing.
After recovery we had to go back to 5C for his monthly pentanamine. Since he started to itch with the IV method last month we opted to try the breathing type again. It is much shorter in time 15-20 minutes but Owen says it tastes horrible! He kept giving me the pleading look as he sat under the tent with the nebulizer tube in his mouth. I told him next month he needs to bring his iPod or DS in to keep his mind off of it.
We were off a little after 1 and headed to Carousel. Owens christmas money was burning a whole in his pocket and he was itching to get back to that super hero store. 'Play the game, Read the Story' He started to get a spinal headache on the way there but insisted he was fine and just needed to eat. So first stop was the food court. He ate 1/2 slice of Pizza and said he couldn't eat. We got to the store - he looked around about 2 minutes and said he didn't see anything "What!!!" I knew something was up. Are you SURE you are ok? Yes I just want to go to the Game Craze store further down the mall. We got there and he immediately said we needed to leave his head hurt really really bad. We got to an exit as fast as we could and I left him on the bench while I ran to the car. He slept the whole way home and then more once we got home. He is finally awake now but not feeling great. His cough is acting back up and his head still hurts. Too bad he has spent his break not feeling great, but at least it was Christmas and lots of new stuff to occupy him at home so he doesn't feel like he missed anything.
I got a call from Dr. Mackowiak today (Tylers endocrilogist (sp?). His blood work was ok again. His TS4 level still shows supressed so he knows he does have hyper thyroid but the levels are good again. He doesn't believe it is a lab issue. I had asked this as everytime Auburn did the lab work his thyroid showed sky high, but labcorp always showed ok. But the fact that both labs showed the TS4 levels off indicated the results were most likely good. I am still going to stick to labcorp... just in case. He is sending another script and he needs to get blood work done again a week from monday. He wants to hold off starting treatment again to try and understand this rollercoaster of a ride he is on. He wants us to see Dr. Kort and get her opinion on him and about surgery. I told him his pulse has been up and down as well. Out of seven nights four were in the 90's and 3 over 100. The over 100 are the concerns. But it isn't like he was over 100 - 3 nights in a row. It was 92 94 101 99 104 103 95. So who knows what his little body is doing, sure has the doctor scratching his head! He said it is just now normal for him to spike and return to normal as quickly as he rises.
So who knows - we always seem to be different here!
Have a good night!!!
Wednesday, December 26, 2007 4:28 PM CST
Hope you all had a very Christmas - we sure did!!!
Saturday night was Papa Fred and Grandma Lea's christmas party. The kids had a ball playing with their cousins and it was a wild house for awhile till they started to run out of steam. Owen was low key during the rough housing and mostly listed to his CD player. Later they played Uno and some quieter things. Us adults had a blast too and if you were hanging with the kitchen crowd you better have a good sense of humor! We 'decorated' their kitchen with marker on the walls and ceilings... now before you think we are real crazy - they are tearing down the walls and ceilings this saturday for a remodeling - so we just wanted their old walls to go out in style. Jake LOVED being able to write all over the cupboards, hopefully he doesn't think this will allowed anywhere else or next time he is there!
Sunday we stayed low key. Owen is still fighting his cold and we figured down time was best.
Monday was quiet until late afternoon when we headed to Aunt Shelley's and Uncle Petes for our christmas with Chris' family. Grandma Bonnie, Hank, my Mom and Aunt Susie were there as well. The boys had fun playing with PJ's Wii and chasing Lexi. She was in the best mood and is walking now, if she wasn't my sister-in-laws baby I might have to steal her, but I think they would find me! I think she even melted Chris' heart as he volunteered to feed her the nighttime bottle and rocked her to sleep! He still told me I couldn't get any ideas.... but a girl is just what a Daddy needs to melt his heart!!! We exchanged gifts later that night and Tyler screamed with delight over a Mickey Mouse & Santa DVD! Jake ripped package after package exclaiming 'AWESOME'. Chris asked him what one present was (it was a finger painting kit) he replied "I don't know, buts its AWESOME!" Gotta love it, he was so excited. So many good things and the kid were loving it. We received a special gift from Aunt Susie - a trip to Disney with Pete and Shelley & the kids! We will probably go next fall, but how exciting, we keep saying we are going to do it, and now we definately are!! It was a great night of just hanging out with the family and alot of laughs. Then it was time to head home in hopes that Santa would come!!!
Chris and I were up first at 8. The coffee was made and we were relaxing when the kids came down at 8:30. I could tell 'someone' had been snooping during the night, presents were pulled out from the tree. Owen did admit to it later, searching desperately for a package that looked like the Wii! It was a whirlwind of stockings, and presents for the next while and shrieks of delight. Owen was very confused as none of his Santa gifts were anything he asked for ( A Wii and if not a Wii then a PSP ). Instead Santa brought the Goosebumps series DVD, Flag football, and an iPod nano ( he wasn't too upset about that one LOL) Soon he came upon a Wii controller, and Wii spiderman came. Now he was really confused... he is still stuggling with his belief of Santa... "Mom are you Santa? Cause you messed up, these should have been in Santa paper." No- honey, I went shopping long before you saw Santa but knew you were asking him for the Wii so I got you extra's for it. "But I didn't get it, now what...!" Panic setting in... Well you can save you christmas money to buy one or take these back. He was stuggling very hard not to be upset. Then he found a box, not wrapped in kid wrapper - but addressed to him... "oh please!" Yes! The Wii!!! Mommy and Daddy got him the Wii not Santa, I want the credit for the great gift this year!!!
Papa Fred and Grandma Lea came out later morning with more goodies for the kids and us. Tyler got some more Mickey DVD's and some Mickey mouse pants which he immediately needed to put on. He is definately into Mickey, so Disney will be great. We spent the morning playing the Wii with them, I think this will be alot of fun and for once all of us can 'play' a video game!!! My Mom and Uncle Steve, Papa W and Grandma Lee were all here for dinner. We spent the afternoon putting together toys and relaxing, it was a very nice afternoon. I made all 'surprises' for dinner. I took a bunch of recipes off the internet as I was bored with the same old dinner every year, and luckily they all came out great and were delicious!
Everyone was gone by 6 and I could have gone to bed! Played some quieter things with the boys and relaxed on the couch until bed time. We asked Jake what his favorite thing was and he couldn't decide. So we asked him if he could only keep one thing what would it be. The lip came out and began quivering with tears in his eyes " NO I don't want to take them back! " Oh honey we AREN'T taking them back we just wanted to know your favorite. Whew big relief and back to EVERYTHING was his favorite. So cute!
Today Owen had therapy and I went in with them so we could discuss Owen's frustrations and how he is handling it. Unfortunately his throat was very raspy today and he didn't want to talk alot as it hurt. So he did alot of Yes and NO's with the head. But if you struck the right cord he would start talking alot - his throat was hoarse but some topics were more worth chatting about than others. Darren gave him a stack of comics in covers to add to his collection - how great!!! He also has a bag of limited comics in another bag as 'rewards' for what they get accomplished at their upcoming sessions. Does Darren know Owen or what... bribery gets you everywhere with Owen!!! What a perfect combo though - 2 comic collectors together!
After Owen and I went to the mall, as his EB Game gifts cards were already burning a whole in his pocket. He bought a couple things and we headed home. Papa Fred was just pulling in to grab the boys for a Papa day. Owen decided not to go, he wasn't feeling great and was not up to McD's. Good thing he was asleep an hour later and slept for 3 1/2 hours!
I got our house pretty much back to normal and alot of old toys stashed in the basement to make room for the new since everyone was gone or sleeping so it was perfect! Later we played some of the new board games and a little bit of everything else. We jumped from new thing to new thing.....
On the medical front.... as you can tell Owen is still not feeling great. His cough is actually deeper. I did call the doctor to give them a heads up, as there is no way right now they will be able to give him anestesia for his Spinal on Friday. They want me to do counts tomorrow morning and even if the spinal is not a go, they still want to have a monthly checkup. Tyler is doing ok. I have been taking his pulse everynight after he sleeps and he has been in the 90's 3 nights and over 100 two nights. So I am waiting for the doctor to call with his blood work results. If he doesn't call by tomorrow I will call to let him know that he is spiking over 100 in his sleep. This may cause us to start the medication until we decide what we are going to do long term for him. Jake is my healthiest at this point and he is starting to get stuffy. Great vacation - everyone gets sick! I myself am getting quite stuffy. Mostly at night. Last night I was really stuffy, but I think part of it was sitting and taking th big breath that everything was done.
So we have lots of things to do and play with and I am betting we hit them all before I return to work - Jake will make sure of it!!!
Have a great night!
Saturday, December 22, 2007 7:05 AM CST
Things are going well. He has had some good days at school. Thursday was bowling day, he got 3 strikes and 4 spares (bumper bowling) but that made his day! Today was his party at school. We were busy making blueberry muffins last night to bring. Seems most kids like the
candy and cake though he had leftovers. He is not a candy or cake person so he just can't believe the kids didn't go crazy over the muffins! Friday night he had a Christmas party at Seans. They played outside - King of the mountain. The kids were great and Owen was off limits of getting rough with, but he could throw snowballs and push the others.
Jake had his party thursday and was just bubbling over as usual. Today Grandma Pat picked him up for a surprise and he is spending the night. He got a hug from Emma at school when he left, he was so thrilled!
Tyler had his party thursday and came home with lots of goodies which made Jake so jealous. But Tyler is a great sharer so that made Jake happy. He has had a couple of good days again at school, but they were 'fun' days. Maybe the break will be good for him, especially I am off
all week so he will get plenty of mom time.
I met Missy, a friend from NC who is up for Christmas at Curleys for a bit while Owen was at his party Friday. It was great to see her again. I missed her in September with Owen in the hospital.
Now on to the doctor appointment today.... Tyler did go with us. He wanted to see him again and check his thyroid growth as well as his weight. So his appointment next week is cancelled. Appearance wise Tyler still seemed fine to him. He tends to see hyper-thyroid kids very antzy and unable to sit still. Tyler slept in my arms the whole appointment!
So he definately thinks we should start treatment as soon as possible. His numbers the last couple blood works has been extremely high and that is not good to leave it like that and potentially could become life-threatening. Yeah love to hear those words.
Medication could be used. It would be extremely important that Tyler got his medication as prescribed. Since Tyler at this point seems to have spikes in when his thyroid goes high he would recommend a medication that would shut his thyroid completely off and then another to give him the amount of thyroid he needs. The reason is with a
cycling thyroid we would not know when he was in need of medication and when it needed to be tapered off. When first starting the medication he would need to be monitored closely for side effects. He would need regular blood tests and doctor visits. To bad he doesn't have a port for the blood draws! Some of the side effects can again be 'life threatening' thus the reason for close monitoring at first, but these are very rare. The one he is more concerned with is the effects on the bone marrow. The medication tends to hinder white blood cells producing. Since Down Syndrome children already have a compromised immune system and bone marrow there is more to think about. Therefore if Tyler gets sick the need to stop his medication will most likely be necessary so his white blood cells would produce enough to fight the illness. Again during any illness he would need reglular blood work to monitor what his white blood cells were doing. My concerns are that Tyler is very bad about taking medication and usually finds any in his food and nicely returns it to me, and it is crucial he gets it daily. I am also nervous of the blood draws. Tyler is good about it, but today we repeated the blood work, so this was 3 times in 2 weeks and he freaked when we walked in the lab, saying 'no mommy no' so I worry about that. Lastly he generally has sinus infections from
December-early May and this would mean alot of blood work as well, and being pulled off the medication he needs.
On to option 2 - surgery. The surgery is very delicate and a good surgeon is absolutely crucial. He said they do have a good surgeon in syracuse Kara Kort - so if anyone knows anything about her let me know! The surgery requires removing the majority of the thyroid. A minimal
amount will be left to allow some thyroid production and thus eliminate the need for medication for hypothyroid (low thyroid). A nerve that is directly realted to the voice box is wrapped around the thyroid thus making it a very delicate surgery as a 'slip' can paralyze the voice
box. Lovely. Also there are calcium glands attached to the thyroid and the hope is not to disturb these either so that calcium supplements will not need to be taken. The good part is- if all goes well then the potential is there that no medication is needed after surgery and he is fine. Do I need to say what my concerns are on this one?
So what to do? We are meeting with the surgeon on Jan. 14th to discuss surgery and hear her views. I have to monitor Tylers pulse every night when he is sleeping. If I see it over 100 I need to let the doctor know. He just doesn't want to see his Thyroid keep going higher during
this decision period, or if he becomes very hyper and out of control. He says he is basically walking on the edge of a cliff. He could fall off or fall to safety. The decision is ours to make, I wish they could just tell us what to do! The doctor said basically it is to determine where we want the risk. With medication it is after it
starts and until he regulates. Also there is no guarantee it will stay regulated and he could potentially correct to normal again on his own or he could need adjustments and be on medication all his life. With surgery the risk is up front. After surgery there is nothing to do except possibly take a low thyroid medication and calcium if anything happens during surgery, but to miss doses of these are not life threatening.
We discussed Tyler's behavior. Although he can't say we will 'never' see behavior issues once treatment (either way ) is done. But we will see significant improvement, but part of his behavior is attributed to Down Syndrome. But he believes the really disobedient behavior or disruptive behavior is more related to the thyroid spiking. No real ideas on what we can do to eleviate the behavior. Basically he has a war going on inside him and you won't be able to reason with him. So another reason to get moving in treatment.
So we are thinking about what to do. Any input from you if you have any experience in hyper-thyroid I would love to hear it.
Owen has a little bit of a cold, but it really only comes out at night time he gets all stuffy and coughs. This morning he is really coughing though and I am going to take him to the pediatrician just to check. The last thing we want is to land in the hospital for Christmas! He has a low grade fever of 100.
Tonight is Papa Freds and Grandma Lea's christmas party so hopefully he is up for it, he loves seeing all his cousins and it is a fun time for all.
Have a great weekend and I'll check in soon!
Wednesday, December 19, 2007 6:09 PM CST
Things are going ok. We have had a couple of glitches. First Owen had an incident at school that we are not sure of what to make of it. He made the comment to his classmates that he wished he had died from his cancer! Needless to say they were upset, his teacher was and so are we!!! We discussed this with him last night and he said he just gets sad sometimes because of 'all' the things he can't do because of the stupid cancer. When I pushed him on 'all' the things, he said running, jumping, all the fun stuff. In gym when they play tag everyone goes after him because he is easy to catch and he can't catch anyone. I reminded him of all the fun stuff he does outside of the physical things. Including going to the SU game last night.... I told him - you know the other things will get better and you will regain your strength but if your were 'dead' you couldn't do anything, you wouldn't see your friends, your family, you wouldn't have camp to go to, SU games, video games, sledding, concerts, musicals, did I need to go on with all the things that he does now and couldn't do if he died???? He was crying and saying he was sorry, he just gets in grumpy moods and thinks of all the bad sides of it all. I told him he is definately to discuss this more with me and he needs to discuss it in depth with Darren. He is talking more about Cancer at school where he use to never discuss it, but only in negative terms and 'shocking' terms.
Then on to issue #2.... Tylers endocologist called and his Thyroid is still very elevated. He does not want to wait anylonger and it needs to be addressed immediately. Chris and I are going to meet with him this friday and discuss all our options and the pro's and con's of them. I hope to have a better understanding of what all of it means, but he does have Graves disease. There is so much information on the internet about it gets very hard to know what I am reading as there are many variations and extremes to Graves disease. So my list of questions is being written and hopefully we can get this resolved and Tyler back in sync. He has had some really bad days at school the last few days. The doctor told me before that we can't 'blame' Tyler, it is not his fault. I need to know what are all the behavior issues we can run into and help determine how to help him in school and what is because of the disease.
So that is our life in a nutshell.... hopefully good days are ahead and we can put some of this behind us. Owen has a doctor appointment on the 28th for a spinal tap, and Tyler has to see the endocologist that day too, unless that changes after our meeting on Friday.
The boys got an early present yesterday. Nicole and Kim stopped by with gifts from them and Samantha, Carol and Eddie. New homemade fleece blankets! Jake got a dinosaur, Tyler got spongebob, and Owen NY Yankees. They were so excited!!!! Tyler even ditched his very old and warn afgan. As he went to bed, Chris heard him open his door throw his afgan into the hall and close his door, so yeah maybe I can finally ditch the old one! So thankyou - they love them!!!
On the fun side we have some fun days ahead. Owen has a kid christmas party at his friend Seans house Friday night. My Dad's christmas party on Saturday night, and then Sunday I am thinking about taking the boys on the scenic train ride from Union Springs to Seneca Falls complete with Santa. Sunday will depend on how burnt out we are from the other two days because Monday is christmas eve party with Chris Family. Tis the season to go go go. I was thinking the train ride was low key and a quiet fun, but if everyone is tired it could be the stress ride of a lifetime!
I'll let you know how we make out on Friday!
Have a good night.
Sunday, December 16, 2007 4:18 PM CST
We had just a great weekend here!
Friday started with me attending Tyler's gingerbread house activity. He was very happy to see me walk in the door and settle in to stay. He did a great job on the house and did alot himself. Course then it was time to go... and I knew that would be difficult. That is why I tend to stay away from activities of Tylers in the middle of the day. He unfortunately had a rough afternoon, probably still mad that I left.
Saturday, Owen and I headed to Carousel Mall. He was working for Camp Good Days selling kazoo's and other items to raise money for the Camp program. We were suppose to be there at 2 but it took 35 minutes to find a parking spot!!! So needless to say we were late.... I left Owen with Sam and went shopping to pick up my Uncle a gift for his 70th birthday party Saturday Nite. I can tell you, I am soooo happy my shopping is done. It was a nightmare shopping, so many people and lines everywhere.
Owen was having a great time selling and Sam said he was quite the salesman. She pulled them in and then he took over with the sales pitch! He was getting hungry so we took a break and headed to the food court. On the way we passed a store that was all Super hero stuff, book, comics, games etc. Owen about passed out! Of course we had to check it out and he can't wait to come back after Christmas with some money to spend! Owen was starting to get tired so we left about 5:30 (his shift was 2-6), but Sam was nice to let him scoot early. She is a cancer survivor herself and now works Full time for Camp Good Days, wanting to give back to the people who helped her so much! How great is that!!!! If you are at Carousel Mall stop out front of Best Buy and support the Camp Good Days program. It is an awesome program and allows anyone affected by Cancer (kids, adults, siblings) to attend the camp and other activities free of charge. Like I was saying to Sam, that this was Owens first year that he attended camp and he loved it. I think being with other kids 'like him' and not having to feel left out, or insecure if they are tired or not feeling good. They are with people and other kids who understand each other, whether they choose to ever discuss it or not, they just 'get one another'.
Saturday night Chris and I went to my Cousin Lisa and Dave's Christmas Party / Uncles 70th birthday party. It was a night filled with friends and family and alot of laughs. The snow storm was coming down pretty good by the time we left.
Today was a great stay-at-home day. Owen and I were suppose to go to the Hannah Montana concert today but I was never able to get any tickets and I was not willing to pay the crazy prices the tickets were going for on ebay. Now I am sooo happy that we didn't have tickets, as a trip to Rochester in this storm would not have been fun! It has been snowing like crazy and it is going to continue through tonight too. It is actually very pretty - (since I don't have to drive any where today!) - with the big flakes just steadily falling.
We spent the morning playing some video games, then hotwheels, and coloring. This afternoon we ventured outside and stayed for 2 hours sledding down the small hill on the side of the house. The boys loved it! It was great sledding snow. They even got brave and were doing 'tricks' like standing and sledding. Owen made the comment as we headed in that today was the best day he had in along time and he felt like he was able to play 'just like a normal kid, not a cancer kid' He did do awesome and to see the excitement and fun he had made my day!
We are relaxing and getting ready to eat an early dinner (5:30 is early for us!) and then it is the Survivor Final tonight!
Thursday, December 13, 2007 6:19 PM CST
Well the snow came down and did not stop! Schools were closed early but it took over 2 hours for the kids to get home!
Tyler had blood work this morning and did great as usual. Hopefully I will hear from the doctor tomorrow on the results. I did call the school to see if there was any rumor of the school closing and then Chris wouldn't bring him - but as of then there was no talk. but Murphy's Law - chris was back in auburn when the school called. Port Byron wasn't closing but since Tyler rides a Union Springs bus and Union Springs was closing the bus was coming to get him! Oh well - should have called Union Springs as the weather was worse south. Port Byron did end up closing 1 hour early.
Owen had to ride the bus home - and it was along bus ride - like I said 2 hours! Jake loves the bus so this did not phase him. At least Owen got some good reading in - don't know how he can read on the bus, I never could. I worked with Jake and Tyler on site words. Jake is struggling with them at school and all of his are included in Tylers so it will be good to work them together.
Last night was my Christmas party for the admin building that my boss hosts. It was at Springside so we got to have the yummy souffle! We had a good time, and nice to hang with everyone outside of work.
Looks like the snow has stopped, at least for a while - we are expecting a really BIG storm on sunday!
Well Owen is on week 85 of 106 - so 21 weeks to go - 147 days!!! Oh we can see the light at the end of the tunnel!!!!!!
Have a good night.
Tuesday, December 11, 2007 7:14 PM CST
All is going well. Owens counts are holding. He has WBC of 1.4 and an ANC of 786. He needs an ANC of 750 to stay on the full dose of chemo is on. He is feeling well and enjoying play practice He had it the last 2 nights and then tomorrow night. Today he had therapy. Chris took him, and said he came out in one of the best moods he has seen Owen in for a long time. He was very chatty the whole way to school. I know Owen loves his time with Darren and I think he is to the point he is very comfortable with him so I hope he starts letting some of the ghosts inside him come out. He still has some real fears and lets us see how scared he is of the Cancer coming back and how much he wants to be normal again.
I thought I was coming down with something last night. I had really bad stomach cramps and was in bed by 7. Nothing came of it and I was fine today, so I have no idea what that was!
Tyler had a rough day at school yesterday and then a great day today. So the rollercoaster of behavior continues. Thursday he goes for bloodwork again so we can see what his thyroid is doing.
I had my great Aunt Florance's funeral today. It was a very nice ceremony and her daughter Mary Alice wrote a beautiful eulogy.
I am in great shape for Christmas - one gift card left to pick up and ALL the wrapping is done! Well except for the presents my husband will buy at 7pm Christmas Eve!!!! He actually went shopping yesterday but as I expected came back empty handed - he needs the stress of the clock ticking I guess!
Have a good night!
Sunday, December 9, 2007 7:09 PM CST
We had a good weekend. Not too much going on. Saturday Owen subbed for bowling. He only had to play one game which is about his limit I think right now, you could even see him getting really tired 1/2 way through the game. Owen went to Grandma Pat's to spend Saturday night. He hadn't had an alone night with Grandma for a while and I think a break from him and Jake fighting was needed! Chris and I went to dinner with my Dad, Leanne and my brother Steve. Then we headed off to the SU game.
Close game but ended up a loss for SU... bummer! But with no Defense - can't expect to win!
Tyler and Jake went bowling with Kim. Jake thought the pins were like teeth! He even got a strike!!! He was very excited - but was really sad he didn't get a second bowl! Kim said it was a 'very interesting' night of bowling - but they had fun!
Owen started to feel sick today. He was real stuffy and running a low grade fever of 100. He ended up feeling better later in the day. It was a superhero kind of day today I guess. First Jake and Tyler played Dr. Connor (the lizardman) and Spiderman. They were so funny, and it was great to see Tyler so involved and understanding the whole idea of the game! He knew right when to swoop in and when to 'get knocked out' it was so cute. Later Jake and Owen took over playing the same. They actually played great together for over an hour but the arguing is starting now... guess it is time for bed!
Owen started complaining that his ear keeps hurting. It is fine and then he gets a sharp pain. So far tylenol has helped but if he is complaining tomorrow it will need to be checked. I have to do a blood draw in the morning so we can see where his counts are for his chemo meds.
Tomorrow starts play practice. The next 3 days he has practice after school, I will need to go get him at 4:50. So these are going to be long days for him.
Other than that all is well! Thanks for checking in!
Friday, December 7, 2007 6:39 PM CST
The Christmas Concerts were wonderful.
First up was Jake - Wednesday afternoon. He was grinning ear to ear and very excited. He did all the hand signs and kept right up. I thought for sure he would go into stage shock!
Wednesday night was Tylers. Tyler really surprised me. He usually just stands on the stage and chews on the sleeve of his sweater he is so nervous. He still looked nervous but I saw him sing a couple times. The second song he got to sit near the front of the stage and I went up close to get his picture - well that made his day! He followed me back to my seat so he knew where we were and kept checking on us and smiling the rest of the concert.
Owen's was Thursday night. At his age it is just the kids who have joined choir that sing. He looked so sharp in his dress clothes! He is in the front row right in the middle. He was right into the night, singing with passion. It was a beautiful concert.
For some reason - maybe the lighting - none of my pictures came out break they were all blurry.
Today Owen had a field trip to Ithaca to see the NutCracker Play. After returning to school and lunch they went out to play in the snow. Owen came in complaining that his side hurt. That it felt like someone was stabbing him in the side. Chris went to pick him up, upon arriving he said Owen seemed ok and after laying down for awhile at home he was fine. I have to wonder if part of it wasn't again feeling left out as the kids play outside and perhaps he was having a hard time doing what they were doing. Any kind of physical play time he ends up 'not feeling good'.
I received a call from the endocoligist today about Tylers last blood work. He is really elevated again for the hyper-thyroid. He wanted to know how he has been acting lately. So I told him myself and school were journaling his attitude and lately it has been on a roller coaster. Great one day and very disobedient the next. He believes Tyler may be a 'cycling' thyroid. So he is normal, spikes, returns to normal etc. We will repeat his blood work next thursday and see what it is doing. He thinks we will most likely move his Dec. 28th appt. up and start him on some medicine. He wants us to come in first to discuss the medicine as it does have possible side-affects some of them serious. But again they are 'possible'. Bottom line he believes he does have Graves Disease. Surgery may still be an option, which would eliminate the issue, but since he is a cycling thyroid - he could straighten out and medicine is only needed temporarily. I don't know - a whole lot of questions, concerns and yet another 'bump' in the road just not a cancer bump this time.
One day at a time.....
Tuesday, December 4, 2007 7:54 PM CST
SNOW, SNOW, SNOW!!! It came down galore. Today was the first cancelation of the schools, and the first disaster of trying to get out of our driveway and down the road. Boy am I looking forward to winter!!! LOL arghhhhhh
We cancelled Owen's therapy too. This morning was so nasty and didn't want to have Chris drag all three boys in. Hopefully we will find a window to get him in later this week, but so far only afternoons are available and I don't like to take Owen out on the afternoon from school as that is the 'meat' of the day for school studies.
So the boys had a fun day at home with Chris and no fighting - how the heck did that happen. But I walk in and let the fighting begin! Perhaps its the competition to see who can drive mom the craziest!
Owen is feeling ok for the most part. His back was bothering him last night and then his sides today. I read on another site how steroids gives her son back and side pain... so I am wondering if perhaps this is the same for Owen even though he is done - had his last dose Sunday morning - perhaps this is his reaction to coming off of steroids???
Tomorrow Morning Owen has a dentist appt. at 8:45 and Tyler and Jake flu shots at 9:30. So Chris isn't working again tomorrow so he will drop Owen and Grandma Pat will meet Owen. Then head for the flu shots. I am sure Jake will do much better with Chris than me... he freaks out at the mention of a shot! Dropping Tyler off at school with go better too without me doing it. See it is me isn't it??
Tomorrow is Jakes Christmas concert in the afternoon so I am taking the afternoon off. Tylers is tomorrow night. Owens is Thursday night. Wow I lucked out on that - none of them crossing especially with Tyler in a different school district. The down side is I will miss my Mom's night out this month, which I have really enjoyed being a part of. But #1 is home and tis the season!
We watched the classic Rudolph tonight - always a favorite! I love the christmas specials and it is such a nice time as we all cuddle up together to watch.
Have a good night!
Sunday, December 2, 2007 6:23 PM CST
Our festive weekend is over and lots of fun was had!
First Saturday was the University Holiday Party. We had a great lunch and then enjoyed the various activities: Face Painting, letters to Santa, arts and Crafts and of course sitting with Santa! It was really nice to see alot of the families we have not seen in a while and to see them OUTSIDE the hospital! It was also nice to see some of the nurses and our doctor off the floor and just for fun!
Saturday night Chris and I went to his christmas party and had a good time. Chris had a little too much fun and was allittle under the weather today! LOL
Today we were off to the Camp Good Days Party. We missed quite a bit of the activities I think. The party was 11-4 so we took our time this morning getting ready and arrived at 1, figureing 3 hours was plenty of time to be there. Well we caught the tail end of the buffet and then after some presentations of awards to the volunteers it was just the DJ and dancing. Most of the activities and raffles were before lunch! So now we know for next year! The important thing was Owen got to see his 'girlfriend' Jen from camp!! His counselor Seth was there too - so Owen was glad to get to see all of them again.
The kids are excited to finally be able to move the present on the December countdown calendar to Christmas and Jake can tear off rings on his chain countdown...
This week Jake has his concert Wednesday at 2pm and Tyler at 6:30pm. Not sure when Owen's is yet. He doesn't knwo either - course it is probably on a sheet of paper crammed in his desk!!
Finally got the rooms moved around and the bunk beds gone, and a twin bed here for Jake. So Owen will be transitioning back to his room now!!! Thats the goal anyways! Jake is thrilled to have a big boy bed! Tyler wants a big boy bed now too. He kept saying "Me? Ty Ty Bed?" So I will order the parts to convert his bed to a regular bed now. Ahh another milestone, no more toddler beds all my boys are growing up!
We are selling Jakes Crib/toddler/full bed if anyone is interested - email me. It is posted on www.craigslist.com under Syracuse and Baby items if you want to take a look.
Have a good night!!
Friday, November 30, 2007 6:21 PM CST
Things are going ok. Owen had a rough day yesterday. He got up fine, didn't want any pain medicine and a little while later left for therapy. By the time he arrived at therapy he was in tears, his legs where bothering him. I got him to go into see Darren, who nicely transported him via a roller chair! He came out though still saying he hurt and just couldn't do all the walking at school. It was gym day, and they had art which was at the other end of school. I told him his teacher would work with him and he could most likely stay back and just work on other things in the classroom. No go he was sobbing. So I left him stay home and he basically slept or cried of the pain most of the day.
Today was a much better day! I am not sure how much is pain, how much is his mood from steroids, how much is from the Vincristine chemo on Tuesday and how much is his inability to deal with pain anymore.
Tyler had a rough day yesterday and was in trouble at home last night. He woke up this morning in a very mischieveious and destructive mood. I would have bet money it was going to be a very long day at school, but I got a phone call and he was great!
My cousin in Canada emailed me and their neighbors little boy was just diagnosed 4 days ago with leukemia. It is just everywhere. Luckily ( not sure if that is the right word...) Glo is right next door to this family and can help them through the ups and downs from experience with Dejah.
This weekend is filled with Christmas parties. First University's is tomorrow. Chris' work tomorrow night, and then Camp Good Days on Sunday. Kind of ironic but both of the kid's parties are due to Owen having Cancer.... (nucor's is this weekend too but Owen wanted to go to Camp Good Days instead to see his buddies and hopefully 'Jen'- his 'girlfriend')
So hopefully he is up to it, but we will play it by ear and make sure he takes it easy at them.
Have a great weekend!
Thursday, November 29, 2007 6:55 AM CST
Please pray for one of my Caring Bridge families who lost their little girl last night. Alexia earned her angel wings at 11:27 last night. She has been fighting the beast of Cancer since she was 10 months old. I have been following her for most of her journey - she was almost 4. It hurts to see the BEAST win again - these children have so much to give and it just isn't fair.
Angie
Wednesday, November 28, 2007 5:51 AM CST
Well the day did not go as planned but everything is fine. We started out at the hospital for Tylers thyroid bloodwork which he did awesome on and got to pick out a stuffed animal. He picked a christmas elf. We headed to Port Byron to drop Tyler off, when work called. There was quite a mix up with the new Xerox machines being delivered, they wanted to pick up all the old machines but the install of the new wasn't until tomorrow!!! So we detoured to work to get it straightened out and did leave there until 11. Tyler ended up having an accident - wetting his pants so we had to detour to Marshals and pick up a new outfit to wear to school! Needless to say Tyler didn't get to school until almost noon. He had quite the meltdown as I left him there, he had decided he was spending the day with Owen and me!! I thought I would get a bad report on his behavior that day but it looks like he straightened out and did ok.
Owen and I headed to Syracuse and had time to stop at Denny's for a quick lunch. Owen got his flu shot today - he wasn't too happy about that but he definately needs it. I need to get mine today and then the other boys get theirs next wednesday. Owen got Vincristine chemo - so we expect to see some nasty bone pain over the next several days. He also got his pentanamine (anti-pneumonia) IV. He had a weird reaction during it. He started to itch all over - yet no hives appeared. He then got real nauseous and felt like his face was 'saggy'. He was almost falling asleep sitting in the chair. I got him up on the exam table and gave him some water. I started to tell him Owen, Tyler and Jake 'baby' stories which kept his mind occupied. He told me he was scared as he still felt really strange. Thank goodness the IV was almost done. Next month we will go back to the breathing form of the pentanimine. He doesn't like this as it taste awful but only lasts 10 minutes. He did agree though if he was going to start reacting to the IV he didn't want that either.
His counts are good so all medicines are a go and this is a week of steroids - arghhhhh!!! He is due back Christmas day so we have switched it to the friday after Christmas. He will get a spinal tap that day. After discussing with the doctor he will not get the bone marrow test that day. Generally they don't do a bone marrow test during maintenance at every spinal but we have been since we had the scare back a while ago. But all has been well so they will not do the bone marrow test in December.
Tonight is an SU game and Owen is planning on going with me as Chris will not be home in time.
This weekend is filled with Christmas parties - one for University hospital on Saturday and then Sunday is Camp Good Days. So lots of holiday cheer coming!
Have a great day!
Sunday, November 25, 2007 6:49 PM CST
Our weekend finished quietly. Owen was going to go to his friends to spend the night Saturday but took along nap as he was feeling great. When he woke up he ate dinner and thought he was feeling good and that maybe his whole issue was he was hungry as he had not eaten all day. So off he went and I was debating standing in the cold with Tyler and Jake for the parade... you know I hate the cold, and since they didn't know about it ( I am getting smart and not telling them things ahead of time just in case...) I decided some board games and fun in our warm house sounded better... Well Owen returned home in less than an hour. He was not feeling good again.
So far today he has been feeling fine - other than his normal morning pain. We headed to the mall today for the visit with Santa. I did clue Santa in (much to Jakes horror) or the constant sibling fighting in our house and if he had any words of wisdom. Jake agreed with open eyes and shyness that he would be much better and he could get along with his brothers. Seems he forgot this promise by the time we got home!!!
Tyler loved Santa as always and cuddled right up. He just told him he wanted 'toys' no specifics so I guess that makes it early. Jake had a looong list and even forgot some that he wanted me to go tell him after. Owen cuddled up and made his request. I think he is on the edge and keeps asking me if I am Santa. I told him that Christmas is as real as he believes it is - just like the Polar Express. So not sure where his head is.
We headed to Sears after for the annual Christmas pictures - which I have posted some. I will post the website as soon as it is available - takes up to 48 hours. And YES Grandma there will be some in the mail for you - I pick them up on the 6th - I promise to get them out this year!!!! I am so bad at the snail mail system!!
Tuesday is Owen once-a-month doc visit. We will also have therapy in the morning, and Tyler also will have his monthly thyroid blood test.
Please pray for a little girl Alexia. I have been following her for years and she has relapsed and the doctors have siad there is nothing to do. She has been holding her own and actual has no leukemia cells now from the low doses of chemo they were giving her to keep her comfortable. However she just started to have breathing issues and has landed in PICU, her breathing issues have deteriorated. Her dad left to return to Argentina for a couple days as she seemed fine... yeah in the cancer world things change quickly. He just landed in Argentina and was desparately trying to find a flight back to NC. Keep this family in your prayers as they fight for Alexia's life.
http://www.caringbridge.org/southamerica/alexia/
Good night.
Angie
Friday, November 23, 2007 7:43 PM CST
It was a wonderful Thanksgiving. The day was filled with board games and just hanging out. Owen did his best to beat Uncle Steve at Chess and Checkers but Uncle Steve just couldn't be beat. Owen was just determined to beat him at something and wanted to get out PS3 and challenge him to a game... but sorry no go... this is a family day Video games are off limits and I wasn't budging on that. So he brought out Conga... it is a kid type pictionary. You have to either act out, mold the answer out of clay, fill in the blank a sentence or a guestimate of a number answer for the various questions. Steve met his match... I think it was more he had no idea how to be a 'kid' and just use his imagination in this game!
Dinner went well and I think everyone was stuffed. Tyler ate half the turkey I think!!! For whatever reason Turkey seems to bring on sleep and he crashed for an hour after dinner. We celebrated the night and cheered that next Thanksgiving 'chemo' should be no where near our family.
Today we headed to Grandma Pats in the morning to put together her new Christmas tree. The boys were just so excited to see the christmas decoration. And the BOX the tree came in... wow that was alot of fun! We got laughing over a box I had years ago, long and skinny that I made into the Batmobile. It was spray painted black, had a steering wheel, bat emblems and all sorts of extra cardboard accessories. It was a hit for along time, until it just fell apart from being used daily!!!
We headed home and let the decorating begin!!! We spent the day decorating the tree. The boys just love to decorate the tree. It is a little logsided with most of the decoration in the lower 4 feet of the tree but thats okay - it is beautiful and the did the majority of it. Owen and Daddy played Chess for awhile then and Tyler was content to watch them and the TV. Jake continues to help me. He broke about 4 Christmas decorations along the way.... then he asked me " Mom did I ruin Christmas because I broke the decorations?" I said " No honey thats fine - they were accidents". So then he asked " But if I break like 5 or 6 then I will ruin Christmas?" Me: " Jake you could break every decoration in the house and it wouldn't ruin Christmas, as long as we have our family together THAT is what Christmas is about" He broke out in his adorable smile and said " OH- I love you Mom" NOW that is the Jake I LOVE so much ( we won't bring up the 'other' side of Jake LOL)
Tomorrow is another quiet day at home, and depending on the weather we may go to the Parade on Sunday in Auburn.
Owen actually had a pretty good day yesterday, he was achy in the morning but having company certainly helps to distract him. He did run a low grade fever last night 100.8 but no sign of anything this morning. He was hurting after decorating the tree. It was his back though, and he figures it was from bending up and down so much picking up decorations.
I love these long weekends, wouldn't it be nice to always have this much time to enjoy!!!
Thanks for checking in!
Thursday, November 22, 2007 7:58 AM CST
HAPPY THANKSGIVING everyone!!!! We are looking forward to today and as Owen said 'A good meal' hmmm not so sure how I take that! I will be cooking with my mom, brother, and Chris' Dad and step-mom coming over. Last year Owen was feeling good at this time, but was hovering at low counts and worry of fever loomed over us the holiday weekend. This year he looks great, hair back - although a little unmanageable right now as it grows in LOL. We have so much to be thankful for. Our lives are calming down and we are seeing the end of the tunnel for treatment (5/06/08!!). Our family, friends, strangers and employers continue to support us 100 percent and have gotten us through this journey!!! Thankyou everyone for being there for us - we couldn't have done it without you! In a nutshell we are thankful for every day! Thankyou for all the nurses and doctors at 5C/7H you have been wonderful and have taken such good care of us and are our home away from home!
Owen has had alot of leg pain the last few days. Tuesday he did not go to school. I practically carried him into therapy tuesday morning & Darren DID carry him into his office! They had a little crash landing but all was well. I stayed for therapy today so we could discuss where Owen has been and how we see therapy moving forward. We did talk how we need Owen to talk and address the 'real' issues more than just enjoying the fun part of therapy. He needed to dig into those dark corners of his life and start working on addressing them. We talked of his sibling fights with Jake and how we can change these. It is hard to believe if you see these two fight - that Jake absolutely just adores Owen and just wants Owen to play with him and put down those video games!!!! Owen has some 'work' cut out for him to remember to write down some nightmares he has, his feelings when he is down etc. We discussed his transitioning back to his room this weekend, as the bunkbeds will be taken on Saturday and he can get into his room. He is quite nervous about that. Says he is afraid in his room, he likes knowing mom and dad are close. So we will put the walkie talkies to use and see how long it takes me to get to him when he gets scared.
So I kept him home tuesday from school, it wasn't worth trying to send him. He was fine if he was sitting but when he walked he was in pain - and I know Owen pulls the wool over our heads - but I think this was pretty genuine. He was up and moving for a few hours later that night where he just felt stiff, but then the pain increased again. I did do blood counts WEdnesday morning just to rule out anything there. His WBC was high 5.5 and ANC 5000. Although these are normal levels they are too high for him. While on maintenance and the chemo pills the idea is for him not to be low, but not to return to normal - kind of a middle of the road target. I did call the doctor and the nurse was going to check with Dr. Cherrick if there was anything to change in his meds (he is alrady on the 100 percent dosage for his weight) or thought on why his counts were 'normal'. I did not hear back though.
He actually felt good most of Wednesday, but around 3:30 spiked in high pain again. To see him attempt to walk you know he is stiff and sore, he has a very noticeable hobble right now. So we are hoping this is nothing and that it is just increased stress in his bones - that will go away after chemo. Thats a long 6 months of bone pain though - especially if it is getting worse! We don't go back to the orthopedic until the end of January.
Happy Thanksgiving - and try not to eat too much!! Relax and enjoy the day and your family and friends!!!!
Love - the Wawrzaszek's
Sunday, November 18, 2007 4:56 PM CST
We had a good weekend. I did take the boys to see 'Fred Claus' Saturday night. It was a really cute movie with lots of laughs. Tyler and Jake got bored and asked to go during a couple of the 'quiet' times in the movie, but were able to stick it out. I had visions of having to call Chris to come pick them up!
Today Chris took Owen out to shoot his pellet gun. He has been itching to shoot it since hunting season is official, but Chris has been hunting and you guessed - I am not a gun person and I have to draw the line on helping my children shoot guns!!! That is Uncle Steve's and Daddy's job and I really don't mind if they don't do it! LOL!! Jake and Tyler hung back to watch the target practice.
I wanted to alert everyone to an internet scan that someone tried to pull on me. I have 2 ads in the paper, one for bunk beds, one for a convertible crib. I left me cell as the number to call. I had a message on my phone from 'Jane' who was interested in my Ads and to email her more information on them to her email address which she left. I thought it was strange not to specify what ad but hmmm maybe she wanted both. So I emailed her pictures and more info on the age etc. of the beds. I received an email back that said she was interested in the bunk beds and would send me a Money Order or Certified Check (my choice) and additional money for the shipping. She had a consignment business and if I would just send the balance of the certified check (minus my cut) via Western Union this would go to the people who would handle the shipping. Sound a little fishy??? You bet. The Money Order or Certified Checks are FAKE. They look real - you can deposit them in your bank, now you send the money - YOUR MONEY - off through Western Union. No one ever comes to pick up the merchandise and then you find out from your bank the Check you deposited is fake. This only works on big ticket items - ie. a bed - would cost quite a chunk of money to ship and is their profit. Just be careful there are so many scammers out there now and I can see how people could be lulled in with thinking it is safe since they are sending a money order! Any time you have to send money on to someone else in a deal - beware!!!
Off to play candyland.... have a good night!
Saturday, November 17, 2007 7:05 AM CST
Things are going well. Owen thinks he did great on his Social Studies ELA despite his poor study habits! I told him imagine how well he would do if he 'really' studied. He just looked at me and said reading his notes once is how he studies and it works for him, if I force him to change he will ruin it!! He loves Social Studies and his 96 shows it! He didn't hesitate to point out that just because I stink at it he shouldn't have to study harder!!! Oh what a character!
Had Tylers PT conference yesterday and he is doing well over all. He did great on his modified state test. He received all 90's and 100's on unassisted tasks. He had sentences to read and match the picture that goes with them, matching money, counting etc. He was very proud of his accomplishments and so are we! I brought pictures of him taking his test - they have to do this to prove he is doing them unassisted and he just beamed to see them! His behavior recently is the concern. He was much better after having his TV removed, and maybe the point hit home, that and having Daddy step in and address the situation. You know if Daddy gets involved its serious!!! We are going to start 'trending' his behavior spikes. One of the things the endrocologist said was we would see changes in his behavior when he was spiking with the hyper thyroid attacks but usually they are gradual, not the extreme we are just witnessing. But we thought it might be worth noting when he does go through these changes and see if they are related. He doesn't have blood work again though for 2 weeks so he may be through the spike ( if that is even what is happening) and we may not know. But I think this is a great thing. Tyler has done this for quite a while where he is great and then has periods of very nasty behavior...
The homefront is getting a little better. Perhaps all the restrictions and priveleges being removed is hitting home. Jake again had his train removed last night for being nasty to Owen, and he immediately changed his tune and became a nice boy again!
Owen did not feel well yesterday. He was complaining of being very achy in the morning. Which is not unusual. He was scooted off to school where he said he slept most of the day and did not feel well. He came home and immediately went to sleep. I got home and he said he was feeling much better but did not want to go to the game. Chris was going to be home and was not going to SU - had to save up his energy for the big opening day of hunting! So I opted to go. What a great game. This team is so much fun to watch! They are young, confident and just gel together. They had some spectacular plays and just makes it a great time! Looking forward to this season!!!
Nothing planned for the weekend, which is good. Owen has said he needs some down time and just hanging at home. I may take him to the mall for a hair cut to try and tame his unruly hair. It is growing in great but is curly and very fine and just sticks out in every direction! He wears his hat most of the day at school to hide it!! He was suppose to go to the dentist and get his haircut thursday with Jake and I but because it was ELA tests that day - I cancelled his dentist appointment so no hair cut either. I need to get all the groceries for big turkey day this weekend too. Owen is drooling in anticipation of Thanksgiving. He just wished he was on steroids next week so he could eat even more!!!
Monday - Mom and I plan to jump start our christmas shopping - arghhhh can you believe I just said that!!! However she pulled her back so we will play it one day at a time on whether that happens.
Have a great weekend!!!!
Wednesday, November 14, 2007 8:05 PM CST
First I want to report a missing dog in our neighborhood since so many people read this maybe someone can help. The Scozzari's have lost their Jack Russel Terrier - Mac. He is White with one big black spot on right side, brown on ears, brown on right eye. He does have a collar, a license and microchip. He has been missing since Monday. If anyone sees him please let me know and I can get a hold of them. Thankyou!!!!
On the home front it has been constant sibling battles and I have a screaming headache!! Tyler has been mis-behaving at school the last few days and very defiant at home too. He was in bed at 7 tonight and is grounded from his TV, he was not happy, but something has to give! Jake has been just bugging and annoying everyone the last few days and doesn't quit! He has had his legos, hot wheels and drawing boards taking away and still gave me a very hard time over PJ's tonight! Finally in the middle of our battle - Chris walked in and it was a total turn around - but on a pair of PJ's and got in bed!! ARghhh I have lost control!! Owen is just fighting me on studying for his ELA. I know it is Social Studies and he does great, but he needs better study habits. Course I ask him some questions and he fires off the answers and just whines for me leave him alone - he KNOWS this stuff. Oh Calgon take me away.....
Owens PT conference went well. He is doing great in school, all 90's except his language / writing that was an 88. But he is in school so much more this year and he is happy about that, as we all are!!! He has been talking about Cancer at school more, but is also using it now as an excuse of why he can't do something or to get a break when he most likely doesn't 'need' one but 'wants' one...
Jake had a OK report, he has some work to do. Most was no surprise. He needs more work on his writing. He is still having a hard time holding the pencil correctly and doing firm strokes. His mind tends to wonder and not stay focused on the task. This was something I knew going into kindergarten and the pediatrician thought he would settle in once he got in the routine of school. Jake like busy work (building, drawing etc) more than constructive school work. We are working on some writing everynight when I get home now and hopefully his week areas will improve as he goes through the year.
Tyler's is Friday so no report there yet except behavior and we need to get to the bottom of that!!!
Owen tried out for a play at school and was so proud to annouce he made it!!! He is a knight and has a non-speaking role as all the 5th graders do. We are so proud of him. I was so glad he tried out, but very nervous too, because if he didn't make it I knew that would be so upsetting to him. But now that worry is gone.
So I will be turning our home into boot camp to regain control, so it could be fun here for awhile! LOL I will be the 'mean' mommy instead of the fun mommy until they learn I am the boss!!! At least Chris knows I am the boss :-)
Have a good night!
Tuesday, November 13, 2007 5:29 AM CST
Things are going ok. Owen is definately fighting some bug. He didn't spike a fever Sunday night, just stayed warm. Yesterday he slept most of the afternoon. He stayed home from the SU game - want him to get over this and not let it get worse. His counts came back ok, but did show he is fighting something. I spoke with the doc office and they did say as long as Owen was feeling good, I KNEW he had counts then I was fine to give him tylenol and stay home and no ER visit. Owen had been playing PS3 when he was spiking real high and other than being cold he was fine, so that had been my feeling he - didn't look sick or feel sick... So for now we let him run his course and hopefully kick this virus to the curb for good.
Jake and Owen have no school again today due to Parent/ Teacher conferences. I have to run to both schools this afternoon for progress reports. I need to pick up Owen's SS notes as the ELA tests are Wednesday & Thursday and he 'forgot' them. I found a practice test on line yesterday much to his horror, so he still had some studying to do without his notes!
I am not going to the SU game tonight. I opted to stay home, and will go to the game on Friday and hopefully Owen will be up to going. Today Shrek3 is released so tonight will a cuddle night on the couch!
Go SU - we'll be cheering for you from home!!!
Sunday, November 11, 2007 5:37 PM CST
It was a good weekend. Owen had a friend spend the night friday so as always that is alot of fun. The played detective and solved a good murder mystery... one of the clues they found was cocaine on the chap stick.. hmm maybe too much CSI watching?!! Saturday he subbed for bowling. Then we went to the mall to do some shopping... well ok I shopped, he and Thomas played games at Bass Pro.
He did run a fever Saturday night and I am sure it is still the virus that has not completely left our house. I never did get sick, but sure had the chills all night long thursday. Chris still is not feeling great but is just a little stuffy and Jake and Tyler are still coughing some. Tylenol didn't seem to touch the fever brewing so I gave him Motrin which kicked in right away and brought his temp from 103.5 to 98.7 in 25 minutes. I did not call the doctor as I knew he had counts and it was only to bring a trip to the ER to give us an anibiotic and then release us due to having good counts. Yes I am playing with fire I guess, but he is so tired of having to go and just wants to stay home. I have to do counts tomorrow morning and will see if needs to be addressed tomorrow. He felt fine all day.
We went to Alexis first birthday party today!!! It was fun for all the kids. They were awesome and played great all day. It was actually 'quiet' if you can believe that! Lexi was very good but I thin a little overwelmed with all the people and festivities. I can't believe it has been a year already!!!
Owen is starting to get warm again now - only 100, but just seems to prove it is viral since it only appears at night time. He still feels fine... but I guess I feel if it were an issue the fever wouldn't disappear all day long. I will touch base with the doctor tomorrow after I get his counts.
Thursday, November 8, 2007 4:54 PM CST
It was a great night for SU! A 50 point win - they looked good and alot of young talent. Owen enjoyed going and did fine walking to the dome. He was slooooow but made it. He ate everything in site at the dome, pizza, hotdog, hot chocolate, soda, snow cone... holy cow never bring a boy coming off of steroids to the dome!!!!
Next week there are 3 games Monday, tuesday, and friday. I have to figure out what we are going to... i don't want to be gone 3 days!
Owen did ok at school today, went down to the nurse for a headache but that was it. He says he is sore from all the stairs and walking yesterday at the dome, but it is a good sore - means he used some muscles!
I may have jinxed myself about never getting sick... I have been freezing since about 2 today. I had my heater on full blast and more my coat all afternoon at work. I am now wrapped up in my robe and just can't get warm. I feel fine otherwise so who knows, might be my body rejecting the weather getting cold! I am truly a 90 degree person!
Time will tell. Owen mentioned the flu shots at dinner tonight and I said that he would get his next time at clinic (27th) Jake and Tyler were going to the pediatrician but they didn't have an opening until Dec. 8th on the weekend, otherwise I had to take them in the middle of the day on Nov 30th. But Jake heard 'shot' and totally freaked out and went into tears that he doesn't like shots and please no shots. Well it continued for 10 minutes... which then sent Owen crying upset that he upset Jake... oh it was fun. All is calm again and no more mention of shots till they are here!
Have a good night!!!
Tuesday, November 6, 2007 4:45 PM CST
All is going well. Owen's counts have rebounded. His WBC is 2.9 and ANC over 2000 so all his chemo pills will resume. He will get Methotrexate on tuesday's and 6MP nightly.
Owen went to the dentist today. At Build-A-Bear he was complaining of his tooth hurting. I took a peak and at first just saw 2 teeth coming in, but with a closer look - one of the baby teeth was still there and not loose! It hurt when I tried to move the baby tooth. So I called the dentist. I was thinking he might have to have it pulled, as this happened to me when I was young. He went in today and with a little bit of wiggling from the dentist - and Owen was able to pull it himself!!!
Tomorrow Owen and I will go to the SU game as long as he is up to the walk to the dome. His pain is getting better, it has been a week since his Vincristine so I think it is going to get better everyday.
Have a good night!
Sunday, November 4, 2007 5:47 PM CST
Happy 4th Re-Birthday Owen!!!! Four years ago today Owen received his bone marrow transplant from Jacob. So he is 4 years in remission from the AML!! We have to be very happy about this - it is the nastier of the 2 leukemia's to get rid of. Now we just need to kick this ALL to the curb once and for all too! 6 more months to go!
We went to Build-A-Bear today with many of the families from the hospital. PROP - the Parent Reach Out Program - sponsored a day for the kids to get an animal. There were so many kids there and they all seemed to have a blast making their animal and picking out the clothes. Tyler and Jake tagged along too. The idea was that Owen got one through PROP, Tyler has never gotten one so he could, and Jake could help Tyler.... yeah all was fine with this plan until there was a TRICERATOPS to build!!! Yeah no way I would get out of that one. So all the boys got one. Tyler choose Cat in the Hat - another surprise!! Owen choose a bear and then a spiderman costume, and a spiderman shirt and pants. Now his wardrobe at home should be complete - he has batman, superman and spiderman for his build-a-bears.
Met one of the mom's up there that we use to cross paths with all the time. Owen and Jonathan seemed to be on the same path - always inpatient both scheduled and unsceduled all the time... Well Johnathan was in a wheelchair so I went over to see how he was doing. He has relapsed again.. the pain in bad and it is hard to walk now. He is scheduled for a bone marrow transplant at Stong in December. DAMN YOU CANCER!!! She said Johnathan is tired of it and doesn't even want to go through with it!! He is around the same age as Owen - it just sucks what this cancer does to their lives!!! I told her they are awesome there and will take great care of him.. my prayers are with them.
The rest of the day was filled with playing with their animals, and a bunch of board games. Chris went to the opening SU game. I opted not to return to Syracuse after being there. Plus the beginning season is a game every few days! We have another on Wednesday and Owen will probably go. They did win but I guess it was tight for awhile!!! Have some good young recruits so we are looking forward to a good season I hope.
Went to Mom's night out the other night, and had another good time. I am so glad I have started to go, they are definately a nice break and alot of fun!! Although what happens a girls night.. stays at girls night!! Right girls? LOL.
I think our household is finally back to normal.... do I dare say that? Chris came down with the bug too, and missed thursday and friday of work but seems to be back to normal... well as normal as Chris gets!!!
Steroids haven't been too bad this time. His 5 day pulse is over. He was emotional but not too bad. He would cry at the drop of a hat and take everything said very literally so jokes were to a minimum with Owen the last few days. Fighting with Jake seemed to be at an all time high but we have survived and hopefully things can calm down again. We are in the middle of re-doing Owen's room. We are returning to a full size bed and getting rid of his bunk beds. Trying to get him back in his room to sleep!!! He has asked for a 'regular' bed several times so we are giving this a try...
Have a good night everyone and thanks for checking in on us!
Thursday, November 1, 2007 5:05 PM CDT
What an awesome Halloween and the weather was just awesome for it.
Started the day at Tyler's school. We walked the big track around the football field. Tyler did a great job - and joked around giving little sprints of energy. As soon as the parade was over it was time to make the mad dash to Union Springs. It was murphy's law - I got behind a farm tractor (4th car back) and no where to go.... eventually we passed and we made it to Owen's school at 10 after 2. The parade was still going and we sprinted up to see Owen pass twice. Now the mad dash to Jakes school. We arrived right on time and we welll in place before it started. Tyler was getting mad waiting - he wanted to do something!!! Here comes Jakey... yeah! After the parade we went to Jakes room where he was very busy showing us lots of cool things. The fish, the crabs, the toys...
We headed home for about an hour before having to head back to Union Springs to pick Owen up from a Play tryout.
We headed off to Aunt Anna's to start our night. A gourmet dinner at McD's which we brought to Grandma Pat's to eat. Next to Grandma Bonnies, where we also met up with Aunt Shelly, Uncle Pete, PJ and Alexis (Happy 1st Birthday Lexi Today!!!) We walked around the corner from Grandma Bonnies to see a very scary garage full of monsters, blood and scary music! Owen wasn't scared though!! Finally off to Papa Fred's. We walked Swift street down to Grandma T's then off to do house to house for goodies. Owen started to get tired and complained of his legs hurting. Him and Chris headed back to papa's and Jake, Tyler and I continued down Mattie street. There was no stopping Jake!!! He ran from house to house - shouting which ones had the lights on!!! He was so excited. Tyler did great too and was awesome with his Thankyou's! On the way back down Mattie street I could see them slowing down... I was having to carry their bags between houses as they were soooo heavy LOL. One house was all decked out in astrobe lights and a Darth Vader on the porch. Jake was nervous to go up but finally did very unsure of him. Tyler walked right up to him, and as he reached out to touch him - The sword lit up and he moved!! Tyler backed away quickly very nervous - but realized it was a 'nice' Darth Vador so it was okay!!
Back to Papa's and Grandmas' to check out the loot. boy did they get alot! We finally rolled them home and somehow got them calmed down to go to sleep. They were not so excited to go to school today....
Thankyou everyone for a wonderful Halloween!!!
Tonight is Mom's night Out for the mom's from the hospital, I am on my way out and am ready for a great night!
Hope you all have a great night!
Wednesday, October 31, 2007 5:40 AM CDT
Things are going well. Owen had therapy yesterday morning. He was in a silly mood - once he woke up- and not sure how much 'work' he did. He promises to work harder next week and I am going to get a peek at his biography they are working on. As we were leaving he asked me how 'retelling' his life helps him. I explained it was alot like his website. I write to the website because it is 'therapy' for me. To sit down and re-tell my day and talk it out helps me to deal with everything that happens. Howe especially when things are 'bad' I am desperate to get to the computer. My typing it out calms me and lets releases my stress to get my fears and anxieties down on paper. This seemed to make sense to him.
Off to the Hospital, with of course a pitstop at Walmart to get the new release SPIDERMAN 3! We were actually early for our appointment - a Wawrzaszek 1st I think!!! Owen's usual room was blocked off today so we had to stay in the exam room, Owen was a wreck - NO TV!!! Luckily Gina got him a portable DVD so he was able to put Spiderman in... whew! He basically nodded and short reponses to everyone he was so involved in his movie! His counts have gone down which was kind of anticipated considering the virus he had fought. He still has a lingering cough but it is getting better. Not sure what his ANC was it was not back when we left, but his WBC was only .8 so changes are it is low. His oral chemo (methotrexate and 6MP) will be held for 1 week. He started steroids which will help rebound his counts. I will recheck his counts next monday to resume his oral chemo. But for the next 5 days we are on the dreaded steroids!! He is the Black Spiderman for Halloween. I told him I wouldn't know if it was the suit or the steroids that were making him crazy!!
We went up to Papa W's last night for Halloween. Thought we would get a couple stops out of the way so tonight was not so hectic. Owen doesn't get out of school till 4:45 as he is trying out for a play. We were going to go to Mom's too but alas she has the nasty bug the boys had and we need to stay clear. Hopefully she is feeling better for today. The boys got alot of goodies from Papa W and Grandma Lee. I told them we didn't even need to go out on Halloween now! Think they agreed??? Thankyou Papa and Grandma!
Today is the Halloween parties and parades at school. I have today off. So I start at Tylers school (12:30), his parade is at 1, then head to Owen's - his is at 2, and finally to Jakes at 2:45. So alot of running today!!! As soon as I pick Owen up after the play we will head out to hit Grandma Bonnie, Papa Fred and Grandma Lea, hopefully Grandma Pat and then 'regular' trick or treating!
Should be a fun night!!!!
Happy Halloween Everyone
Sunday, October 28, 2007 6:37 PM CDT
Our fun filled weekend has come to a close but it was a great weekend!
Saturday started with the boys going with Papa Fred and Grandma Lea to the MOST in Syracuse for a Halloween event. The boys had a great time between seeing all the Movie Characters, the lego displays, wall climbing and of course they had the blow up mazes and jumping houses that are always a hit. They were treated to McDonalds on the way home - they were very happy about that. Thankyou for a great day Papa and Grandma!
Home to rest. We watched the Goosebumps marathon that was on all day to take some down time before the Deckers Halloween party. The boys loved being at the Deckers there were so many kids and it was just alot of running and fun to be had. A little bit later the Haunted Barn was ready to be viewed.... I was pretty impressed with Jake - Mr Scardy - he did pretty good, clutching my hand and leg the whole way but not one scream! Tyler loved it! The only time he got nervous was when one of the masked creatures touched him - the yell 'MOMMY' came out, but he was fine. The kids did an AWESOME job decorating the barn with lights and displays - looked like a professional job!!!
Went back up to the upstairs part of the barn to hang out and Jake was full of questions about the things he saw in the haunted part. He kept saying he didn't like the hand that grabbed him. I had no clue what he was talking about. Finally he rolls his eyes and says .. come on.. and leads me back to the haunted downstairs. At the very end someone reaches out and grabs you, but I missed that as Jake was on that side... So now I understand. Jake was too funny, even though he was scared he needed me to know what he was talking about! About 9:30 Tyler was done and wanted to go. Owen wanted to stay so Chris was staying and he could go home with him and I took the other two. Just as I was about to pull out Owen was running to the car, he wanted to come too. He said they were starting to play Man-Hunt (which is like a group hide-n-seek game). He just couldn't do all the running and was getting left behind. He started to sob on the way home, he just wanted to play like everyone else and couldn't. My heart broke for him. I told him he WOULD get there one day. He was 6 months from completing treatment so it was only a little more time. He could also help regaining his strength by doing more physical activities, even if it was a daily walk or making himself do some laps or up and down the stairs at home. Together we could build him back up as he should be able to start regaining some now. I know the stress in his bones causes some of his weakness, but I think he needs more activity and that will help. He was just very sad. He had been having a great time and it was sad to see it end on a down note...
Today we were off to the Burnett Benefit at the Union Springs Fire Department. They lost their home to a fire in September. They had a great turnout, which was awesome to see. Owen was off in one direction as soon as we walked in the door - he had several friends there. Tyler and Jake headed to the face painting. Owen came over and wanted to know if we could bid on the 'live' Bunny on the Auction Table. Hmmmm, that would be NO. He pleaded and pleaded. I explained that he does not take care of his dogs, doesn't take care of his birds, didn't take care of the fish ( we currently don't have any), and when was the last time he took care of Spidey??? (Spidey was his lizard that died back in April and we never told Owen..) He said he checked on spidey the other day. I said 'Oh really?', He says yeah he did, but knows I take care of the feeding. I gave him another look... Then he said 'He's dead isn't he?' YEP - for 6 months now Owen, so now you see why you can't have a bunny! LOL
We ran into many people, so it was a very nice afternoon. One of our favorites - Mrs. Vasquez was there so that was a very nice surprise and Owen gave her a big hug! Owen left with the Deckers to hang at their house for awhile. Tyler, Jake and I headed out shortly after.
So we had a great weekend and are winding down for an early night. Everyone seems to be feeling good again. They all have a lingering cough here and there, but I would assume this will take the longest to clear
Have a good night!!!!
Friday, October 26, 2007 3:55 PM CDT
Owen did ok today so hopefully we are on the mend again.
I took Tyler to the endocrinologist today to discuss his change from hypo-thyroid to hyper-thyroid. It started out bad as I left the directions on how to get there on the counter at home. Luckily Mary Ellen was able to guide me there through my half memory of the doctors name- which I spelled wrong and the road I thought it was on. She madly searched Mapquest until success and called me to guide me there! Thankyou!!!
The doctor discussed all the meanings of hypo, and hyper. He wished he had asked for a repeat of the bloodwork before we had come though. Tylers bloodwork in august was very high for hyper, but it had come down some with the repeat in September. However after viewing Tyler - he did not appear 'hyper' or jittery which usually is a sign of having a hyper thyroid. So for now we will trend Tyler. I took him for blood work following our appointment and will repeat it again before our appointment on Dec. 28th. He said sometimes nothing is done, that the thyroid will correct itself or will have flare ups - which so far seems to have been what the previous blood tests showed. Tyler did go on a growth spurt and has thinned right down which were probably indications at the time that he was flaring. IF he does have elevated tests again and the doctor decides the trend IS hyper thyroid we will discuss options then. What it will mean is that he has Graves disease. There is no cure, but 3 different avenues to pursue to keep it in control. 1-medicine, however it tends to cause low white counts and with Tyler already having a weaker immune system due to down syndrome this is most likely not the choice. 2- radioactive iodine injections. However due to down syndrome and already having a higher risk of Leukemia - this is not a good choice. So 3-surgery to remove the thyroid, followed by thyroid replacement medicine daily.
The doctor also wants to watch for a bowel disease called chrohn's disease. Tyler had elevated blood levels in the bowel area but Celiac disease was ruled out so this Chrohn's is a possibility. Usually this is seen with alot of diarhea.
So I guess the solution for now is nothing - just watch and keep repeating blood tests.
Meanwhile we are gearing up for the Halloween festivities for the weekend. I was going to take Owen to the haunted hayride tonight, but it is cold and rainy and we don't need to flare up anything again. He has not mentioned it, but will probably realize later tonight that we didn't go. Tomorrow is Halloween at the MOST with Papa Fred and Grandma Lea. They have the Star Wars characters, the Wizard of OZ and lots more that will be there. Tomorrow night will be the Decker Halloween party - we are looking forward to that as the kids always have a blast.
Sunday is a benefit for one of the kids in Owens class - The Burnetts. They lost their home to a fire back in September.
So looks like fun, fun, fun - as long as everyone is feeling fine.....
Have a good night!
Thursday, October 25, 2007 5:37 PM CDT
Not quite as good of a day as I had hoped for but not too bad overall.
Tyler was up and off to school, Owen woke up miserable!! Owen went to therapy but we didn't stay. He just kept crying that he hurt all over and didn't feel good. Darren did manage to get a little smile out of him, but we didn't stay. I brought him back home. I figured I had the 1/2 day off today to spend at school with him so I would stay home and see if I could figure out what was going on. He had no fever, but just said he felt awful. We got looking at some Christmas catalogs and he started chatting away and forgetting how sick he felt. Soon I looked at him and said - Owen I thnk you are fine. You just need to get moving and stop concentrating on every ache and pain. He did agree he wanted to try and go to school. So off we went.
We arrived at school and ended up having a nice time. First reading where we broke into groups and did some miny theatre plays. Owen started out slow wanting the small parts but ended up perking up. Off to lunch... yum I forgot how 'good' school lunches are LOL!! Outside for a little recess and then back in for Math. After Math we headed to Social Studies. They were learning the Constitution and Bill of Rights - course I said the Declaration of Independance instead of the Constitution and Owen was horrified... good thing only he heard me!
This never was my strong suit! Owen can ask me any Math question but he is on his own for SS homework!
Well 1:30 arrived and it was time for Parent day to end. Owen gave me a big hug and kiss and looked at me with pleading eyes to stay or take him, but he remained - only 1 1/2 hours left - he could do it!
Meanwhile Port Byron had called, so Mom had to go get Tyler. He was just very tired and sleeping through class (snoring even!), his nose was running so just not doing well. He came home and slept for awhile longer and then seemed to perk back up. So far so good, but he was only has a 1/2 day of school tomorrow due to his doctor appointment for his Thyroid testing, so we will just keep him home and then he will have the weekend to rest up.
We are getting ready to watch ''Meet the Robinsons', got started a little late.. might cut into my 'Survivor' time!!!
Have a good night!!!
Wednesday, October 24, 2007 5:24 AM CDT
Wednesday Night Update:
Do I dare breathe the words that things look good? Tyler had a great day. No fevers and he was in a great mood. He still has a lingering cough but seems to be feeling good again. Hard to believe this is the same boy that didn't move all day yesterday!
Owen was fever free all day too. He rested / dozed most of the day but feels good for the most part. Hopefully this bug is gone for good this time!!!!
Tomorrow is Parent Visitation day at school for Owen. So he will go to Therapy in the morning and then he and I will head to school for the morning. I eat lunch with him and then head out.
Have a good night!
***************************************
Should have known that Tyler and Owen got over that Virus way too easy! All seemed fine and both returned to school on Monday. Monday night Tyler was back to running a fever and had diahrea. By late morning on Tuesday Owen was running a fever and was sent home from school. Mom gave Owen Tylenol, and I ran over to her house to get a dose in Tyler he was burning up and wouldn't take anything for her. I decided on the way back to work that I should let the doctor know Owen has started back up with fever. First thing they said was DON'T give him Tylenol, lets see what his fever does ( it was low at that point 100.6). Arghhh too late! I did do blood counts on Monday and he was 1.2 WBC and ANC of 756, so he had dropped from the 6.1 WBC and 800 ANC on Friday. For now they wanted us to just watch and see what the fever did. If it went over 101 we needed to call.
Tyler was definately not feeling good and slept 90percent of the day. Owen was feeling ok, just achy. By 5:30 Owen hit the 101, which sent him into a meltdown as he didn't want to go in. I decided we would wait another 1/2 hour before calling. By then he was 101.9 - going in the wrong direction. So call the doctor and sure enough he wants us to come to the ER to recheck his counts and get a dose of antibiotic. I packed the other boys up and brought them to Papa's and we headed in, the 'ward off evil spirits' bags packed.
Halfway there I realized - no nummy cream!!! I had even gotten it and had it on the counter but then the boys started to argue and in my rush to get them in the car and settle their fight the cream was forgotten. I am going to get another tube and LEAVE it in the car!!!!
We arrived at the ER and were brought right in. His fever was staying steady at the 101.9. He was able to get Tylenol then. He did ok with the access and no nummy cream. It didn't help that I MISSED!!! I can't believe it, I have not missed an access except once when I first started to access his port. Don't know if I was just nervous of hurting him - he was so tense with no nummy cream. He was just sobbing at this point. The nurse who was taking care of him actually was GREAT at the port and I let him do the next attempt. So Owen relaxed, well for a moment until he knew they were doing an arm poke too. Several hours later the counts were back and he was 1.1 WBC and 900 ANC! - Yippee, he is holding his own and still not crashing! While these counts are not great - they were enough NOT to buy us a nights stay at the hospital. We arrived home at 1am, tired and cold from the miserable weather.
We'll see what today brings. But looks like they each need a few more days to run this virus out of their systems. Still hoping Jake doesn't get it back. He was quite grumpy last night and just being nasty and bugging Owen and Tyler - not a good sign. He tends to get this antzy when something is going on.....
I'll let you know how the day goes.
Sunday, October 21, 2007 7:24 AM CDT
Things here are going pretty well. Actually Tyler and Owen woke up yesterday and were feeling pretty good! Despite Tyler being up at 5:30am!!!
I was busy all morning with Clorox cleaning all door handles, light switches, the furniture, you name it. Get rid of these germs before they re-infect!!! I then left to get a few things done at work and groceries. Owen called while I was still at work and had a melt down that I went into work! He called back a moment later to make sure I wasn't rushing home and was still getting groceries! Guess it was more his belly than not feeling good!
I arrived home and he was ok. He was just achy all over. But I have to say I was very happy - tyler and Owen both seemed to weather this virus much better than Jake - he was down 4 days! I had bought sugar cookie mix and Jake, Tyler and I made halloween cutouts and decorated cookies. Owen had no interest.. guess that is 'kid' stuff too! He is growing up...
Last night Owen started coughing alot. He would get in spells and just couldn't stop. I started to get concerned as he has done that before and we ended up in ICU. I checked his Oxygen (97) and his blood pressure was good too. So just part of this bug.
He just woke up now and is very barky coughing. Guess he just had a delay in the real nasty cough coming out. Tyler seems fine. Owen is sad that he had a nice long weekend and he had to spend it sick. I told him it is better this weekend than next when we have Halloween parties and fun planned - this weekend we had no plans! Not sure if that made it any better.
The nasty beast CANCER has struck again. One of my co-workers lost her father in law this weekend, and my good friend Lori lost her Aunt. Our prayers go out to their families at this difficult time...
Today will be another day of rest and I will finish my clorox scrub down... can I give my kids Clorox baths????
Have a good day!
Friday, October 19, 2007 5:02 AM CDT
Friday Night Update:
At 8:30 this morning I heard from the Clinic and sure enough they wanted Owen to be seen. I packed everyone up to drop Ty and Jake to Grandma Pat. Tyler kept pointing to his throat saying 'Boo-Boo', NOT a good sign...
We were seen by Dr. Sill - our doctor was not in. He did an overview of Owens history as he has only been there 6 months and has not had to really deal with Owen yet. He ordered cultures and asked me the dreaded question of WHY I didn't call when Owen was over 103 in the night! So I explained I was making the assumption he had what Jake, I took all his vitals and everything else was good so I decided to wait as an ER visit would be several hours long, so wanted to wait at that point for our own doctors. Whew - he didn't seem too concerned that I broke the 'normal' law. Now mind you I would never have done that IF Jake had not just rolled through this a few days before. They got Owen on Ceftaz (sp?) an antibiotic good for 24 hours and drew cultures, including a blood draw from the arm. Lori and Natasha were at the hospital visiting her Aunt and stopped down. Lori went in to see Owen while I kept Natasha in the playroom - no need to expose her! So at least I got some snuggles if we don't get to get together in the next few days, depending on our 'sick ward'! It took forever for Owen's Labs to come back - But finally - YES - Owen is clear to go. His white count actually went up from 2.5 to 6.1!! Usually a fever will crash his system, but looks like it was fighting back hard against it, which is great!
So we were on the road at 2:30, call home and get the news... Tyler is running a fever, won't eat and won't drink! Oh what a fun weekend! I could tell Tyler was starting to get dehydrated, his lips were all dry and breaking. He did drink chocolate milk and had chocolate icecream when we got home. Not sure how great those are for fever but at the moment I was happy something was going in him. We settled down and watch Transformers which I picked up on the way home. Tyler ate a great dinner and Owen and Jake picked. Drinking is the big thing, and hopefully Jake will not get re-infected again. After dinner Tyler, Jake and I did some Halloween Arts and Crafts, while Owen went and laid down. He was starting to burn up again - his cheeks were flaming red and he was 102.5
I am soooo ready for bed! I think it will be an early night, Tyler just asked me to go night night- yeah!
If Tyler and Owen follow Jakes path - Owen will be done with fevers late morning and Tyler by Sunday morning. Then the cough will settle in, Owen has already started.
Until tomorrow - have a good night!
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Well I made it home - no airplane catastrophe's this time!
Jake is getting better. No more fevers, but still has a pretty good cough. I probably would have let him go to school yesterday ( he wants to go so bad!) but when he gets in a coughing spell it sounds bad so since they have today off anyway it just wasn't worth pushing for the 1 day.
Well you knew if would happen... Owen has gotten it! He started with a fever last night. When he reached the magic 101 - it was a call to the doctor. Since he has counts and we can pretty much guess the source - he was ok to stay home. If he got worse I needed to call. Well he did get worse. He woke up early this morning and was 103.4! I know I should have called the doctor... but I am pretty confident this is what Jake had, so instead of waking everyone up in the middle of the night I opted to just give him tylenol. He is 102.5 right now so I will be calling the doctor this morning. They will most likely want to see him but going to clinic today is much better than the ER at 3am! My plans were to take a 1/2 day of vacation today since the boys were off. I will call the doctor at 8:30 am to see what they say and maybe they will not need to see him. Although the thoughts of a 'fun' afternoon are probably not in the plans!
Owen was suppose to have therapy at 9am but it is not looking good for this. So we will reschedule this as well.
My friend Lori is in town with sweet little Natasha and we were hoping for some time there... but definately don't want little Natasha to get sick! So we will have to play that out as well....
I'll let you know how our day ends up!
Tuesday, October 16, 2007 8:57 PM CDT
Jake went to the doctors today. I woke him up at 4 as I was getting ready to leave for the airport. He was 102, so I had him take some Motrin. His throat was real raspy and his cough sounded really bad. I felt like a heel getting on that plane!!! Mom noticed he had sores on the inside of his mouth when he got up, and he added diahrea to his list of ailments. So off to the doctors. Bottom line.. it is 'Viral'. I guess the majority of the time high fevers indicate viral. All of his systems were good and the mouth sores too were indictive of a viral infection. Good news is he has not run a fever since this morning. He is still getting tylenol every 4 hours for the cold/ cough, so that could be helping ward it off. But before he was running a fever right through the medication. So it looks like a good sign.
Tyler was THRILLED to be dropped off at Papa Fred and Grandma Lea's to spend the night!! I opted NOT to call him so not to send him in a spiral and make him realize I was not around. Hopefully he has a great night!
Owen is very sad that I am gone, and made sure I knew it! But otherwise he is doing great.
I will be home tomorrow, have a good night!
Monday, October 15, 2007 7:18 PM CDT
Did Owen's blood draw today. All is well, so his medication will stay at the same dose no adjustments. I will repeat his test next monday.
Jake however is not feeling so great. He started last night with the chills and started a fever. He was still running a fever this morning. He has been running between 101 - 101.7 Then this afternoon he spiked 104! Yikes!!! I called the doctor and they wanted me to start alternating the motrin and tylenol every 2 hours. Jake also has a very nasty cough and raspy voice. If he is still running over 102 tomorrow they need to see him. He still has not broke a fever the lowest he has gone is 101 even with both medicines going in him. He is starting to climb again but he can have another dose at 9. Hopefully this stays away from Owen and Tyler!
Unfortunately I am leaving for Birmingham in the morning!!! Is my life cursed that something always happens as I am boarding a plane! We were going to go to Florida on wednesday but ended up having to postpone again, so I guess that is a blessing that we are not headed off for fun with a sick child! I will be back late wednesday night...
Jake is acting ok. A little quieter than usual and wanting to read alot. But he was running around just a little bit ago.
On the bright side Owen showed me his new talent today. He can drink water with his tongue rolled and without closing his mouth to swallow! Now I am not sure HOW he discovered this amazing talent but he is quite please! LOL
Hopefully no news with Jake, and a smooth trip and no plane issues!!!!
Talk to you soon!
Sunday, October 14, 2007 8:48 AM CDT
Things are going well. Owen got his first report card... and it is great! All A's and one B in language. This is due to his writing needing help. He has it in his head, but has a hard time getting it on paper and his handwriting needs work. We are very happy!!!
Yesterday we went to Tim's Pumpkin Patch. the boys had fun (especially Ty and Jake), Owen is getting a 'little old' for the kid-stuff! Jake and Ty ran from pumpkin to pumpkin picking them out as fast as they could while Owen was very selective. The Hay maze was cool and they spent quite a while running through this and hiding out. They had a pig there that weighed 994 lbs!!! That was a HUGE pig!!!
Back home... let the carving begin! Tyler hated touching the inside of the pumpkin and would have nothing to do with that part! Jake thought it was awesome! I ended up doing most of the carving as they selected carvings a little bit harder than they thought... thats ok I love doing pumpkins! Today we plan on painting some pumpkins and going to pick out costumes.
Owen has been feeling pretty good. A few aches here and there. He was tired after all the walking at the pumpkin patch. He fell asleep about 8 last night but then unfortunately woke up around midnight and was wide awake. So needless to say he is still sleeping now!
Have a good day!
Thursday, October 11, 2007 5:02 PM CDT
Yeah Owen went to school and had a great day!!! He did not even go to the nurse! He said he almost did, but decided to stick it out and he did fine. I have been trying to talk to him that everyone has aches and pains sometimes and we have to weigh out when it is ALOT and when we can work through them. He didn't even have any homework - got it all done at school! Wow- I am so happy.
Another Yeah - Tyler had a good day at school! He called me today to tell me. I told the school if we needed to use calls to me for incentive again then that was fine - I will be happy to keep Tyler walking the straight line.
Yeah - Jake had a great day as always. He still just LOVES school. He discovered ordering ice cream today after he finished his lunch. Took almost 2 months to realize it... I think Owen discovered that day 1!
So all is going well, we'll start another positive roll and hopefully keep it going for awhile! No plans for this weekend except maybe some Pumpkin picking and costume shopping.
Have a good night! Keep these good days rolling!!!!
Wednesday, October 10, 2007 6:50 PM CDT
Things are much better today. We let Owen sleep in but he still woke up very grumpy and complaining of just being achy still. By late morning he was feeling pretty good and quite chatty. We figured by the time Mom drove him into school it would be lunch time... so we opted for to stay home. I was able to get him into counseling today as Darren had a cancellation so that worked out good. He came out of counseling quite happy and I am glad we got him in. He is working on a story with Darren - kind of a biography of what he has gone through but in a fun way. He seems to be quite happy with their work but I am not allowed to know anything.
I ran into an old friend at counseling. We went to school together and then hung out for quite awhile in my early 20's. Yeah... along time ago... It was great to see her. We laughed over how great our lives must be... we meet at counseling for our kids!!! But on the bright side , we realized our children needed help! Her child is going through a rough time in the teenage years... yeah another phase of life I have yet to deal with. It was great to catch up though and see that we both 'turned out okay' despite our wild days! LOL
Tyler has had a couple of trouble days at school. Hopefully we are not starting down this road again. He was banned from any videos tonight, so we played outside and hopefully burned off some of his wild energy!
Owen did do alot of reading today, 3 hours!!! Read a whole Goosebumps book that Grandma found at a garage sale. Goosebumps the series is coming on right now so we are off to check this out... hoping it is as good as the books, we love them!
Tomorrow all should return to normal and Owen will return to school, he will have alot of catching up to do!
Have a good night!
Tuesday, October 9, 2007 6:33 PM CDT
Owen had a rough night last night. He woke me up around 1am - his stomach was really upset and he thought he was going to get sick. He barely said the words and was off running to the bathroom. He didn't really feel any better after. I got him back down and got him to drift off for just a bit, at 2am he was running back to the bathroom. He ended in alot of dry heaves that just wretched his whole body. He did doze back off but was very restless all night. In the morning he was crying that his whole body just ached. I figured it was from throwing up - as I know that takes its toll on the body. He fell back asleep and Mom called later that morning when he got up and he was complaining still of just hurting head to toe. I called the nurse and told her about the back and side pains for a couple of days, our ER trip and of his vomitting last night. She was going to run it all by the doctor and get back to me. Mom called back and Owen was in the bathroom with about 100 comic books to read. Said his stomach really hurt and he had not gone to the bathroom for several days. The nurse called back and the first thing the doctor wanted to know was if he could be constipated... hmmmm. I told her he went to the bathroom just recently and had said it was the first time in a few days and Owen is VERY regular. So she wanted me to put him on Miralax for awhile and loosen him up, the chemo pills were probably binding him. I called home and Owen was actually on his 2nd trip of the bathroom! He has now been in 3 times, so I think we may have found the source of all his pain! I guess vomitting can also come from being so bound up too! Who knew??? Needless to say he is feeling MUCH better. Still sore and stiff, which is most likely from throwing up, but that will go away. I am so hopeful this was the source, I hate seeing him not feeling good, and he is just not dealing with any sickness well anymore.
The next bit of good news is "THE BONE MARROW IS CLEAR!!!" Love to get that news!!!!
Heres to hoping things continue to improve and Owen perks back up and returns to school and normalcy once again!
Have a good night!
Monday, October 8, 2007 5:23 PM CDT
Well no answers to Owen's pain. I guess that is good that it isn't anything serious but he continues in pain. He did sleep through the night so I took that as a good sign. He called me at 8:45 when he woke up in total pain. He was upset that I went to work, he wanted to go to the doctor. I told him he slept through the night so I wanted to wait and see how he was when he woke up. I called the office but they are closed today. So I called the doctor on call and after discussing his pain she felt he did need to be seen to rule out anything with the kidneys. So off to the ER. They did a urinalysis. The preliminary dip came out OK. It was dark and they were concerned of blood in the urine or that he was very dehydrated but both came back ok. His blood counts were good, actually his ANC is 4000 which is normal but high for being on chemo, but since he is just coming off steroids this is also expected. Bottom line we just keep doing what we are doing - showers, heating pad, and pain medicine. I have to report to the doctor tomorrow. I am glad all is clear and it makes me think that the pain is just elevated due to his emotional rollercoaster from steroids and just his ability to no longer tolerate pain. I think he gets himself so worked up and is so scared of something being wrong that when the pain is really a 5 to him it is a 10. He definately seemed more relaxed coming home now that he knew he was ok. He was a total wreck and crying on the way up 'what is wrong with me now!' He has just spiked again with the pain and took a hot shower and is resting again. Hopefully this ends quickly and the steroids ( if they are part of the issue ) leave his system so he can relax again.
Hoping for a good night... and sleeping through it again!
Sunday, October 7, 2007 6:24 PM CDT
Owen had a long night and long day today. He woke me up around 2 in alot of pain. Said it was his back. I got him calmed down and massaged his back until he fell asleep. At 6am he woke up just sobbing and literally screaming in pain. Said it was his back and sides, I got him in a hot shower and that relaxed him and calmed him down again. He dozed back off until 9 this morning. But that was pretty much his day. He was either feeling 'ok' or in alot of pain. He has taken 4 showers so far today as they seem to relax his back. I have also been putting the heating pad on his back for periods of time and that has helped too. He just started to spike again and is in alot of pain again. He WANTS to go to the doctor tomorrow - he said he can't take it anymore. I just don't know why he would have all this pain. I don't think it can still be from the spinal tap or bone marrow... maybe the vincristine... maybe the steroids make the pain more amplified... I just don't know. I wish I could take his pain from him. His face is so twisted in pain when he is spiking and my heart is just breaking for him. So I imagine it will be a long night and will have to make him as comfortable as possible. I have taken his temperature, blood pressure, Oxygen stats and all are fine. When we get the pain in control and in a comfortable position he becomes very chatty and brings a smile to my face, but then he moves and it is all gone and the pain is back... When is this suppose to get easier??? I know it has, he has not been as sick and clearly the hospital stays have decreased - but I guess I just wanted it easier. I keep trying to convince myself things are good... and we have had great days... but the bad ones remind us that we are still fighting this nasty beast.
Tyler and Jake enjoyed the day. While Owen was resting and comfortable - Chris, me and the boys played outside with the frisbee and boomarang. They were having so much fun chasing and throwing it around. I think we played for almost 2 hours!!! It was getting dark and I had to convince them they needed to get in the tub as they were dirt from head to toe!!! The took a big bubble whirlpool bath and the bubbles were almost overflowing from the tub. But I had some very squeaky clean boys!
Our pool is finally convered - not that we have been swimming, although Tyler asked just about every night. I feel alot better as it is one less area for trouble! I finished putting the few remaining chairs in the basement so I guess I am prepared when winter comes. Maybe this will ward off those evil winter spirits and we can keep this awesome weather around for alot longer.
Well I am off for some more massaging and hope to get some shut eye tonight. Please pray the pain goes away....
Saturday, October 6, 2007 6:06 PM CDT
Ahhhh... the wonderful world of steroids! The last few days make sense now. Happy one minute, hating the world the next. Feeling good, feeling awful. We are on the roller coaster ride. Thankfully he is only on steroids for 5 days ( tomorrow is the last ), but this is our life the beginning of the month for the next 7 months!
Today was the SU game, at home started in a very bad mood and we thought about cancelling but the thought of that seemed to make the mood worse. So for the rest of the day it was up and down. I told everyone just to go with the flow. If he was happy we had fun, if he was grumpy we just left him alone....
His buddy Dominic was at the game too with the tickets form 5C and that seemed to make him happy. Dominic wasn't feeling great and it was very hot in there so they left shortly into half time. Can you belive it is October and we are saying how warm it is???? We even cut Owens jeans into shorts and his shirt into a tank top to help cool him down. I had asked him to wear shorts before we left but he didn't want to, later he told me it was because he didn't 'have' any shorts that didn't make him look like a dork. OK - haven't figured that one out yet as all his shorts are basically new, but today they weren't wearable.... as I said we are on the roller coaster ride....
Owen seemed to perk up for quite awhile at the end and we did let him have his buddy Thomas come over. So hopefully this will keep him in a semi good mood... Tomorrow is the last day of steroids and hopefully they will leave his system quickly and we can have Owen back.
Have a good night!
Friday, October 5, 2007 5:48 AM CDT
Things are going ok. Owen seemed to do pretty good the day after the bone marrow and spinal tap. He would be up for a while and then need to lie down again. He had minor headaches which is good. Yesterday morning he woke up with a very upset stomach at 5:30. I gave him a benadryl but he still complained he just felt like he was going to be sick. He finally fell back asleep and Mom got him up a little after 9 to head to school. He was not very happy about going but knowing being in school was the key for a friend over this weekend he did go. He went to the nurse once to ask to get a caffeine soda for a headache. Caffeine is what helps him through the headaches after a spinal tap. So he ended up doing ok and I am glad we had him go. He just needs that extra push sometime. Unfortunately we forgot about his appointment with Darren Wednesday! So need to get him back in there....
Last night I went to the 'Mom's night out' monthly dinner with several mom's from the hospital. We met at McNamara's in Camilus. I had so much fun, these women are just great and it is like we have known each other for years! I guess the cancer connection puts you in the trust circle easily and you can talk about anything... and boy did we!!! We were in tears laughing so hard.
Have a good day!!!
Tuesday, October 2, 2007 6:43 PM CDT
Today went well, it was Owen's Spinal tap w/ chemo and bone marrow day. We had a rough start.. forgot Owen's nummy cream for his port access. Owen realized it about 10 minutes before the hospital. So we got it on right away, but it definately wouldn't have the full hour to do its magic. Owen did fine with the access, he said it only hurt a little. After a check up and verifying his counts were good we headed down to surgery. At 11:00 he headed in. Dr. Cherrick was out soon and said all went well. Soon I got the call to head back and Owen was actually awake already! He had to lay still for a little bit longer before he was able to sit up due to the spinal tap. Once he was feeling up to it he was moved to a wheel chair and back up to 5C for his pentanamine (anti-flu IV), and Vincristine chemo. We were headed home a little after 2 so it wasn't bad at all for all he had going on today.
Tonight he starts 5 days of STEROIDS, this next week will be rough with the roller coaster of emotions and he will eat like a champ! He also starts 6MP tonight, he has to take this at night and on an empty stomach - not a good mix for steroids! He will continue the 6MP for 28 days. Starting next tuesday we will had Methotrexate to the mix, this is only once a week on tuesdays.
He does not go back for a whole month now!!! This will be the routine from now until the end. Steroids at the beginning of the month, 6MP, Methotrexate, and then at his monthly check up he will get the pentanamine and Vincristine with Spinal Taps and Bone Marrow every 12 weeks. I will be on pins and needles until we get the results from the bone marrow. I always get that knot in my stomach, this is the time a relapse is discovered so you hold your breath until the risk is past....
Owen is already fast asleep from his big day and we will play the morning by ear on wether he goes to school or not. I doubt it as he is usually very sore the next day. But I have the carrot dangling as I know Owen will 'milk' it. It he wants Thomas to spend the night friday night - he MUST be in school on thursday. That way I will know if he is TRULY sore or looking to hang home another day.
Saturday Chris, Owen and I will be going to the SU footbal game courtesy of 5C! We will sit down in the lower section with several other families from the floor so it should be a fun day! Thankyou 5C and the Child Life Specialists for arranging this special day!
Have a good night!
Sunday, September 30, 2007 6:35 PM CDT
It was a great weekend. Owen bowled Saturday morning - subbing for Samantha who is in Hawaii!!! Wow guess which one I would rather do?? Owen got a little upset - he was hoping to hear from a friend who was suppose to spend the night and go to the Buddy Walk with us. He never did and this sent him into a spiral of a depression for awhile. I played a Pokemon gamecube game with him ( yeah - he crushed me ) and that seemed to perk him up. The boys and I spent the rest of the night playing a few board games which definately put Owen in a better mood having fun family time.
The boys were wound right up this morning ready for the Buddy Walk. Tyler was beaming ear to ear and is saying 'Buddy Walk' pretty clear! He was so happy to see us turn into the park. After registering we were headed to the restrooms. Along the way we ran into the 50-50 raffle and stopped to purchase tickets. Next thing we realize Tyler is NOT with us! Great we are amount 1300 people - most who are wearing the RED shirts from this year. And all Down Syndrome people get the red shirts free.... Mom, Chris and Owen split up and walked around the sea of people and the games set up hoping to find Tyler. Jake and I sat tight and continued to just survey the crowd... nothing... no where... Suddenly Mom yells 'There he is' .. yep walking up the path towards us. He comes running and proudly tells us.. 'Potty'.. Oh my gosh, he knew where the bathrooms were after so many years of coming to the walk and just took himself when we stopped to buy tickets. I am thrilled in one breath but oh my he needs to tell me!!! And go with someone!!!!
He was getting grumpy waiting for the walk to start, he wanted to just get going or something. Once the walk started he was very insistant on being on my shoulders as so many kids were. I did my best and carried him to the bridge, which he loves to walk over. He walked for a bit more and then Papa carried him. He is usually my BEST walker of the three! Forget Owen.. he was in the wagon as soon as we left the park's parking lot! Papa Fred ended up carrying Tyler for a bit too. Then we found a way for both Owen and Tyler to fit in the wagon and Jake got a shoulder ride from Daddy. Back to the bridge and everyone walked again.
We parked the wagon and headed up to the events after the walk. The boys enjoyed a variety of carnival type games set up with prizes. One game was the 5 milk bottles stacked and you had to knock them all over with 3 bean bags to win a prize. Well Tyler stepped up to the game and the woman just stood at the end of the table. Tyler wound up and threw his first shot... boom down go 4 and fall off the table on the lady.. scaring her, she was not expecting Tyler to have the rocket arm that he does. He threw a second bean bag and finished the task! After several games we headed to eat. The Buddy Walk is an awesome event. It is totally sponsor and donation driven. It is an awareness walk so we do not raise funds for this event. My company Nucor is one of the sponsors and it is from many companies like this that it is such a success. Thankyou Nucor and all the sponsors! This year 1300 people attended - a new record!!!! After lunch we waited for the raffle prizes and just enjoyed rolling down the BIG hill, playing catch, frisbee and bubbles. Alas we did not win any prizes or the 50/50. The 50/50 this year was over 2000.00!! Another record!!
I think we had some tired boys when we left but no one dozed off. They are all bathed now and will be rolling into bed in a few minutes. As I was getting Jake dried off he told me that there were LOTS of kids at the walk with 'Tyler faces', they had different hair but had 'Tyler faces'. So I had to explain it was a walk for people who had 'Down Syndrome' which is another word for 'Tyler faces'. He was thrilled that one little girl hugged him and he didn't even know her, but she wants to be his friend! He was too cute.
Next year will be the 10th anniversary for us attending the Buddy Walk as Tyler was just a mere 4 months at his first one. I think I will have 'My Buddy' shirts with Tyler's picture on them made up for the big event...
Speaking of tired... I think I will roll into bed right behind the boys..
Have a good night!!!!
Oh by the way... Dejah came home the other day - much shorter hospital stay than expected and is doing well!!!
Thursday, September 27, 2007 6:03 PM CDT
Owen came home from school today. He complained that he was having trouble breathing. I think he is fine. He has been ok at home the rest of the day and is laughing and playing fine now. He said how there are 'many things' going around at school and flu season is coming. I think he gets very nervous when he hears these things. Although being aware so he is careful is good, in Owens case it can sometimes work the opposite as he worries too much. I hate to tell him he is fine, as it seems like I eat my words as soon as I say them...
He is very skittish though about everything. The other night in the shower he was screaming and crying. I ran in and he showed me this gray mark across his stomach. Well it turned out to just be tape residue and I was able to remove it. But he is just so scared, and I guess how do you blame him. He has been living in this world for over 4 years now!
Tyler lost a tooth sometime today! I have yet to have a physical tooth for the tooth fairy yet, he seems to always loose them somewhere else or maybe even swallows them. His two front teeth that he lost quite some time ago are finally coming in.. too bad corn on the cob season is over - he had to struggle all summer long with that!
Tomorrow is only a 1/2 day for Owen and Jake. Ty has a full day. So when Owen and Jake get home, mom will pack them up and then go gt Tyler later. Since Union Springs is 1/2 day there is no pickup for Tyler at Port Byron unless we only sent him 1/2 day. So since he misses enough school all winter when his sinus issues start up we want to get in all we can!
Remember Sunday is the Buddy Walk - Down Syndrome awareness walk. I will take lots of pictures so you can see how happy this day makes Tyler!
Have a good night!
Wednesday, September 26, 2007 7:27 PM CDT
A good day. Owen had trouble sleeping again last night. He woke me up at 11, 11:30, and 12:00 to let me know he just couldn't sleep. He really wanted to but couldn't. I don't know if he was just light sleeping and kept waking up of he truly never slept. By 12:00 I was wide awake and watch TV until 1:30 or so before I dropped back off. He was up this morning though and ready to go to school on time. I guess we will play it by ear on whether he goes in late so he can sleep or if he is up and ready. He did go to the nurse today but only for a tramadol as his legs were bothering him. He did doze off at home but I only let him sleep 40 minutes and I woke him up. If we can get him turned around from needing these afternoon naps I think he will be must better at lasting through the day. He gets especially turned around after a hospital stay he he is a night owl there and then sleeps all morning. So it takes a bit to get in back in the groove of 'normal' hours.
Jake had his apple picking field trip today. He was very pleased with his bag of apples and had a blast. I did not attend with missing work all last week and then again yesterday.... another down fall of cancer .. may things are given up. There will be many more field trips though and we are hoping for a settled down life during this next 32 weeks. I guess we keep 'hoping' for it and it has calmed down, but a little bit more would be nice. :-)
Tyler has been doing pretty well at school this year. He has had a couple of behavior issues but so far so good. We are still working on trying to cut his hair. I don't want Chris to buzz it! Sunday at Grandma T's party we attempted to have one of the girls cut it while Chris and I held him and talked to him... no good he screamed at the top of his lungs... suprised the cops weren't called in! I attempted again yesterday with the clippers but again he freaked out. His favorite book is Green Eggs and Ham - we read it every night. So after reading it, I read it again with 'new' words. "Do you like your haircut? Would you cut it here or there? Would you cut it anywhere?"... I went on and on and he got quite the chuckle. At the end I said "Try it Try it you will see..." "I do, I do like to get my haircut. I would cut it anywhere!" He was just laughing, but alas his hair did NOT get cut.....
** Update on Dejah - from my Grandma **
His surgery went well and the doctors were pleased with the amount of Tumor they removed from near his heart. I don't know the percent. He is in ICU now but is talking and drinking so that is great news. He will most likely be in the hospital 7-10 days. Once he has recovered they will go after the remaining tumors with chemo treatments. This little boy has alot of heart but needs all your prayers... he has along way to go.
Have a good night!
Tuesday, September 25, 2007 6:17 PM CDT
Off today with both Tyler and Owen for their doctor appointments. Mom came with me to make things easier - THANKYOU!!! I spend so much time going back and forth to Syracuse for appointments with all my kids it was nice to be able to take care of 2 in one trip!
Owen has rebounded nicely from his little set back last week.
Counts:
WBC 4.1
Hemoglobin 12.0
Platelet 301
ANC 3100 (much better than his 42 last Sunday!)
Today was officially his last day of chemo by IV. He was high enough to receive both the cyclophosmadide and vincristine. Next week he enters the last phase of maintenance. It is 32 weeks long in 4 week cycles. He will get Vincristine at his doctor apptointment, steroids the first 5 days, and methotrexate every tuesday, and 6MP everyday. He will only need to go to the doctors once a month the rest is just the pills and blood count checks at home. 32 weeks sounds like heaven to me! He also has a bone marrow and spinal tap next week to start the phase off. I will once again get very nervous as this day draw close. I love to 'double verify' that he is still in remission but I am always terrified to get the results! Make sense???
Tyler did well at his hearing appointment. His right ear has improved and his left ear is the same. He made it through 2 of the 3 tests before obsessing about getting back to Owen. He loves the hospital and knew we dropped Owen off there with Grandma. The last test he tends to do poorly at anyway. It is mostly due to a language barrier. The pictures are not clear cut and some are words he deosn't tend to know so he guesses alot at which one to point to. We will try again in 6 months at his next evaluation.
Owen had therapy today with Darren and they are working on a new project to help get Owen to deal with his travels through this life of Cancer. Darren is hoping it will bring Owen out more to work on something that makes him face many of the issues he tends to tuck away deep inside.
Owen was wiped after the day and immediately fell asleep at home. Even Tyler crashed for a bit at home.
Monday, September 24, 2007 6:59 PM CDT
Owen went to school today. He was very excited to go back and couln't wait to wear his St. John Fisher jersey he received. He had trouble sleeping last night...so I had trouble sleeping as he needed to let me know he was having trouble sleeping! Oh well he was up and ready to roll this morning. It all caught up with him later. He was sound asleep in the nurses office when the fire-drill went off. He seems to lose steam in the afternoon at school and that is when they have the core stuff going on. We are going to try letting him sleep in a little bit more and Mom bringing him to school a little later in the morning to see if this helps at least until he builds up his stamina a little bit more.
We went to dinner tonight at Chili's - 100 percent of it goes to Cancer Research today! Me, the boys, my mom and her friend Sandra enjoyed the night.
Tomorrow Owen has chemo in the morning. Cyclophosmadide (if his counts are 750), and Vincristine. Tyler has his 6 month hearing evaluation too. Mom is going to go with me too. I will drop her and Owen off - take Tyler and then we will meet them at the hospital.
Today is cousin Dejah's surgery to remove a couple tumors from his Cancer. Please keep them in your prayers!!!
Have a good night!
Sunday, September 23, 2007 7:02 AM CDT
Happy first day of fall! Arghhh that means winter is around the corner...
Things are going pretty good. Owen has not spiked a fever since we have been home. Yesterday he felt warm but he was only 99.4 so a little over normal but not a fever! He feels good other than his morning stiffness. I wasn't going to send him to school until wednesday after his doctor appointment, but with no fever all weekend, and he is excited about returning I just may send him tomorrow. Today we have Grandma T's virthday party the bid 70!! So that should be a fun day. Jake went shopping with me yesterday and picked her out a present.. yeah it was something HE liked but it is cute!
Tomorrow Monday, September 24th, anyone who eats at any Chili's restaurant will be participating in helping fight childhood cancer. On that day Chili's will donate ALL profits made that day to help fight Childhood cancer! Hope to see you there!
Next Sunday is the Buddy Walk.. the down syndrome awareness walk. Tyler LOVES the buddy walk. He knows it is a day for him and he just grins from ear to ear the whole walk at Long Branch Park. They have games for the kids, music, raffles and lunch. Anyone interested in joining us on our walk let me know!
Have a good day!
Friday, September 21, 2007 8:51 PM CDT
Well the orthopedic went ok... not what I wanted to hear but I guess it could be worse. He does not have AVN which is a deterioration of the bone. His bones are still growing but he has stess lines in both his knees and his hips, his spine is fine. What the stess lines mean is there is pressure pushing his bones larger and out, hence the way he walks with his feet pointed out. These were not there when we did all the xrays, MRI and dexascan back in february. This is most likely caused from the chemo. We will repeat the xrays in 4 months to see how it has changed. Doctor said we could do another MRI to confirm it but regardless nothing would be done now. While he is still in treatment it doesn't make sense to do anything. Once his treatment is done the pressure 'should' stop and his normal growth should resume. If it does not then we will need to look at other options including surgery. So for now we wait - 7 1/2 months for his treatment to end and then see if progress to normal is made. This just sucks big time, the 'cure' that he needs so much causes so much other damage. I pray for the day when cancer has a cure without all the side effects.
She said when Owen is in pain we should limit his physical activity. I told her we didn't even need to be concerned with that as Owen is not a physical person. "Oh is he a computer/ video guy?" Oh yeah... I guess it is a blessing in a way that we don't need to take away an activity he loves....
So I am sad and feeling bad that he has to deal with yet one more thing. His eyes widened at the mention of surgery but she assured him that he may never need it, the fact that he heard it will weigh heavily on his mind... mine too.
Can I say it anymore... CANCER SUCKS.
On the bright side, he has not gone over 100 today with fevers. He is doing pretty good with his drinking and his eating is definately better since leaving the hospital. So hopefully what ever he is fighting is going away...
Have a good night...
Thursday, September 20, 2007 12:08 AM CDT
************************************
We are home!!! Doctor wasn't pleased with Owen's drinking and especially his eating, but let us go anyways with the promise he would eat 'non-hospital' food at home. True to his word we picked up pizza and Owen ate. I am constantly nagging him to keep drinking. The fevers will eat up his immune system if he doesn't keep the fluids going. I have to call in the morning and report on how he is doing in regards to his eat and drinking. So everybody yell - "eat eat eat, drink, drink, drink" We don't want to do an about face and be back in patient!
Tomorrow Owen is going to the orthopedic doctor again to recheck his bone pain and to discuss the way he walks with his toes pointed out.
Until then... have a good night!
************************************
I have trying to hold off updating until I knew more info. We might get released today. Owen continues to run fevers but his ANC is now above the 500 mark. Since nothing has grown in the cultures it is assumed that the issue is viral and now that his immune system is back we are safe to return home and he can rest up and get better at home. The key now is for Owen to eat and drink - especially drink! He was up at 8, took a shower and was back asleep until noon. I am pushing fluids and he did have cereal and milk. So as long as they see him making improvement here they will most likely release us today!! yeah!!!
I did make it home yesterday. Papa Fred came up to hang with Owen so I could go - Thankyou Papa!!!!
Tyler got sent home from school - his nose is starting again! So I picked him up at Mom's, I didn't even get in the door and his backpack was on - and he was out the door! We had a lot of fun playing pirate outside waiting for Jake to get home. Then the 3 of us practiced golf in the yard, and just had fun! Dinner time rolled around and I gave them their choice.... but no one can guess what they wanted to do??? Yep off to McD's, we only stayed for about 1/2 hour as it was getting late and I needed to head back. When Jake saw how fast we got to Grandma's from McD's he IS very excited!!! He asked Grandma first thing this morning if they could go to the McD's nextdoor! Tyler cried after I got him in his PJ's and realized I was leaving not staying at Grandma's too. He just doesn't understand!! He did keep asking me where Owie was. He seems to be feeling fine, don't need him sick with Owen coming home!! His nose hasn't run, but his cheekds were bright red as he went to bed so we opted to keep him home and ward off anything thrying to brew. So far so good... I hope we aren't starting with the colds already!!!!!
So I will keep you posted but fingers crossed we will go home soon!
Wednesday, September 19, 2007 8:05 AM CDT
Well Owen decided to NOT cooperate. The doctor has said his WBC was going to start coming up as he had monocytes and we could possible go home on Wednesday since he has had no fevers. Well our celebration was short lived. Owen spiked a fever at 9:30 last night 39 (102.2) He spiked again this morning 38.6 (101.4). I guess the good news is his immune system is returning - his ANC is 346. But now we need to get rid of the fevers. So we will continue to stay and wait. More blood cultures were taken last night to re-check. The initial cultures from Sunday all were negative.
I called home last night to talk to the boys. Tyler was crying on the phone. It just tore my heart apart. It is so hard on him when I am in the hospital. He sounded so said and was NOT giving the phone up. When Nic tried to get it from him to let Jake talk he just screamed "Go-away, Go-away - NOOOOO!!!" He did not want to stop talking! Jake said his quick hello and was back to his playing.... I am going to get home today. I am hoping to go and pick Tyler up from school so he has some longer 1 on 1 with me before Jake gets home. Not sure if I will bring them back up here with me or stay home with them. I am waiting to here from Chris on his schedule as I will need to get them back home if I bring them up... Owen would like to see them and they love playing here.
Have a good day!
Tuesday, September 18, 2007 6:31 AM CDT
Things are quiet and Owen is doing well. He is getting antibitoitcs and they seem to be doing the trick. He has not had a fever since 3:30 the morning we were admitted. He has come close a few times, but ends up going down on his own.
He has totally bottomed out though so until he has counts we will not be going anywhere. As long as he stays fever free that is step one...
He feels fine and is full of himself here. He recieved 2 bags of blood yesterday which also could pump him up! But we all agree it is soooo much better to be feeling good and neutropenic than feeling awful and neutropenic!!!!
Back to Saturday.....
Owen arrived in Rochester at 3pm to go have dinner with the football team. He filled up on the macaroni salads and sides before he realized they had pizza too!!! Then off to the football field, to hang out until the game. Chris and I arrived back at 6:30 and it was packed!!!! I think this stadium fits 1000 and there was 5000 there! It is a very small stadium but looks like a well supported one! This is a big game I guess and true rivalry's. Owen showed me the 'cool' water jug and how to drink out of it. Chris and I made our way to the Camp Good Days VIP tent in the end field to sit.
Owen was brought up to the radio booth to be interviewed. He said he just gave his 'opinion ' on the game... which was his team was playing well, but UofR was fighting back. He needed to get back down and yell at them....
He was also interviewed on TB and sounds like many of you caught this! Kim taped the game for us so we will get to see it, and I believe they are sending us a DVD of it. What a ham!
He spent most of the game on his counselor Seth's shoulders - Seth is one STRONG person to hoist Owen around the whole game. Even up and down the stairs when they came down to the VIP tent. Owen came to the tent after halftime, he was cold and didn't feel good and just wanted to rest in there. After a bit we called Seth to come get him and back down he went & back up on the shoulders! Owen's 'girlfriend' counselor Jen was there and he got to spend a lot of time chatting with here. At one point I saw him and Seth looking in the VIP tent... so I am thinking they are looking for ME. I see seth get his cell out so I pull mine out. It never rings...I see him talking and pointing to a spot in the tent. I follow totally confused... ahhh they were talking to Jen and hooking up for a meeting spot...
Will just a few minutes left in the game Owen was back in the tent. He was just too cold and very tired and was ready to go home. I asked if he just wanted to hang in the tent for the last few minutes of the game as he would be going back on the field with the players for some more special stuff after the game... but he just wanted to go. THANKYOU Camp Good Days for an awesome night!!!!
I did ask Owen why he wasn't running and playing ball with the other 2 honorary coaches - that would have helped him stay warmer. He said because they were running far and throwing the ball and he is unable to do that... so again the confidence level is not ther and he won't put him self out there to try. I told him they would have thrown him shrter passes, but he said no - they said there was no changes to the 'game'. Whether they did or not I will never know....
Oh by the way.. Owen's team did end up winning so must be the awesome coaching???
So for now we sit and wait for Owen's counts to return. He will still get his Vincristine chemo today, but not the cyclophosphamide they will have to be held.
I'll let you know if anything changes...have a good day
Monday, September 17, 2007 9:02 AM CDT
Owen has been admitted. His ANC was only 42 - basically nothing! He feels fine except for the darn fever!!! Could be something viral but as usual blood had to be taken and cultured from his port and both arms!!! Luckily we had but nummy cream on both of his arms so depending on where they found a vein he was numb.
We got to visit with Colleen - the life specialist in the ER who had been on 5C for quite awhile. Owen loves her. She gave Owen the challenges for the night - an I-Spy puzzle and a word search. She said dit was a contest so he had to time on finding. Currently the I-spy was at 30 minutes. Well Owen is the King of I-Spy he loves those!! So he made mince meat of in in 4 minutes!!! He received the award for the fastest All -time record and for the nights puzzle. Coleen also have him a mouse for hsi laptop for his prize!! So that perked Owen up a little bit for having to be in the hospital!! His wife Brooke came down to visit too - news travels fast that Owen was at the ER!
He was realy upset when I said we had to come in. He feels he is being punished for having been ablr to have a special dy of being Coach. "I guess everthing comes with a price..." I feel so bad, I am trying to get him confident in his health and these little trips do't help build them. I know we have 8 months of treatment left and netropenic and fevers are still possible - less likely - but still possible. Owen heard me on the phone with the doctor prior to coming over and heard me say his counts were low on tuesday. His eyes shot wide open - "what do you mean I was low - I didn't know!" I explained we didn't want him worrying and didn't tell him. He was very upset with me for that..
So for know we just have to hang out and wait. Cultures take a minimum of 24 hours to grow so that won't be until late tonight. I imagine we will be here a few days while we wait for his ANC to come back up and he must be fever free for 24hours. His Hemoglobin is also low (6.9) so he is getting a transfusion right now.
If I get anymore news once Dr.Cherrick comes in I will let you know.
See down below for our room/ phone#.
Sunday, September 16, 2007 6:25 PM CDT
Owen had a great time in his big night as coach. We ended up leaving with a few minutes left in the fourth quarter as he wasn't feeling good, was cold and tired. I will update more all about his night.
Today he ran a fever early afternoon and it seemed to level out, but he spiked again at 7pm. I couldn't not call the doctor anymore. Due to him being low counts on his last test he has to go in and be checked. Hopefully his counts are good and we can go home, if not we earned a ticket to 7H. Please pray he has recovered and is just battling another virus.....
I will let you all know.
Saturday, September 15, 2007 6:25 AM CDT
Jake had an awesome time at his picnic. As we were coming down the road still a few miles from his school he recognized the route... "hey this is the way to my school!" Yes Jake the picnic is at your school!! He was very excited. We arrived and Jake and Tyler were off running full blast for the playground. I arrived at the playground in time to see Jake find his good friend Thomas - he was so exited to see him. It is wonderful to see the friendship's forming! Jake and Tyler never came off the playground - no time to eat it was PLAYTIME!!!
Then I saw Owen walking up with his counselor Mark - they had returned from Rochester. I can't thank Mark enought for taking Owen!!! They had a great time. Owen got to go to the practice with the St. John Fisher College team. He even got to 'yell' at the team after practice to tell them they were playing like 'pussycats'!!! Hmm a coach in the making? He even participated in practice and was quarterback - with an awesome spiral. He received a jersey full of signatures, and a metal of the courage bowl. He will need a much heavier necklace to wear that one! He loves the water pitcher they use - up to 6 guys can drink at a time and the water is freezing cold!! He was interviewed on TV so hopefully we can catch this... His throat is real sore and we didn't stay at the picnic the full time as he was hurting. Mark said he started to complain of it hurting while they were there. He crashed immediately in the car on the way back.
When we arrived home I sprayed his throat and he fell right asleep. He had a fever of 101! Seems everytime something special is going on he gets sick, and no wonder he gets into a depression that Cancer is ruining his life! He slept through the night waking about 5 with his throat hurting again and in pain. I sprayed his throat again and gave him a pain medicine. We got up about 6:30 he was very restless. He seems much better now and is chatting up a storm about yesterday so hopefully he stays good and can enjoy the days activities with the team and the game tonight. It is going to be a long day with getting there at 3 for the dinner and then the game not till 7:15 and I think it is going to be a COLD night!!!
I spoke with Dr. Bright and Tyler does show an elevated blood test for hyperthroid. So his medicine for hypothyroid has been stopped. He will need to go see an endocrinologist for this. The wait is two months out but they do not want to wait this long and will get Tyler in within a month. They will repeat the blood tests now that his medicine has been stopped and give it a chance to leave his system. The endocrinologist has seen this in alot of kids lately - changing from hypo to hyper. We are told not to worry yest until the detail tests are done. From what I have seen hyper is manageable with medicine too but is a more of a concern than hypo and the medicine is crucial. Great - tyler is finding his meds all the time and not taking them so we will need some new tactics to make sure he gets it if needed.
Never a dull moment here.....
Chris and Billy went up to visit Matt tonight. He is doing better but very sore and tired but I think he enjoyed the visit from his buddies, I am sure it was a lot of laughs and good for him.
Looking forward to the day and will let you know how our star coach does.....
Thursday, September 13, 2007 8:39 PM CDT
Check out the courage bowl that Owen will be coach in: Courage Bowl
Owens name in the paper:
The Coaches
Things are going well. Owen is beginning to feel the leg pain associated with the Vincristine chemo he is receiving, but that is expected. I am actually shocked it took over a week to start happening - he usually feels it almost immediately. So he has been taking a pain killer in the morning and then before bed.
He is VERY excited about going to Rochester tomorrow. This is for the walk-thru practice with the St. John Fisher team. His counselor from Camp Good Days is going to take him so I can't thank him enough!!! He is the one who actualy recommended Owen for this. I will now be able to take Jake to his school picnic.
Satuday Owen has to be in Rochester at 3 for dinner with the team and then a trip to the locker room before the game. Sounds like a great time! Maybe he will be up for coaching SU after this weekend LOL!!! Look out Coach Robinson....
Tyler is doing pretty good at school, he has had a couple of incidents so hopefully he will settle in and these will stop. He has been doing great in school with the bathroom - no accidents yet! Yippee - I am so excited - it is sooooo nice not having diapers anymore. I think night time is going to take a while but I will take it one step at a time.
Jake is still LOVING school! He can't wait for the bus every morning and is running off it every night grinning ear to ear. He is very excited each time they get to go out on the playground! I guess that is always a highlight right?!
On to Matt... he is doing better. Mom went up to see him today and he was in good spirits. Had quite the stories of his whole ordeal, still very sore but things are so much better.
Have a good night!
Tuesday, September 11, 2007 4:31 PM CDT
Check out the courage bowl that Owen will be coach in: Courage Bowl
Owens name in the paper:
The Coaches
September 12, 2007 Update:
Just wanted to let you know Matt is doing OK. The surgeon was able to scrap out alot of the visible infection from his incision sit and on the inside. He had a pic line inserted to give the antibiotics to him for the next 8 weeks possibly!!! They will most likely leave the pic line in for 6 months until he has fully healed from his surgery. Currently he is getting Vancomycin until the cultures show exactly which type of staph infection it is, then it may change. He is on the 7th floor at University. He is very sore and would love company!!!! We are very thankful that he is doing so much better !
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Things are going well. We had a nice weekend. I took the boys to the Tomato Fest on Saturday. The enjoyed the rides of course although they had limited rides since it was a pay per ride deal. We did the Family Fun tent which included Reptile Man, Jake LOVED the snakes and couldn't get enough of touching them!
Sunday we met my friend Lori and Dave and Natasha from florida. The boys LOVED wrestling with Dave, but I think Dave will sleep for days now!!! Natasha is as cute as can be and we can't wait to reschedule our trip from April to go see them and get to visit for much longer. So rest up Dave! We are looking at October. Owen has a bone marrow on the 2nd so probably the week after to let him recover and not be sore from that.
Jake is loving school. Monday was his first full day and he did great - lunch line and all. He is coming home bursting with news of his day. The played the 'buffalo game' in gym so we spent the night playing this. Alot of running and tag involved so Mommy was pretty tired last night!
Owen had therapy this morning. That is going well, he is opening up to Darren and letting him know things that are bothering him and some of the anger he has pent up inside and how it comes out at various times so that is great. Then off to the doctors. Owen's counts have dropped. His WBC is 1.2 and ANC is 456, and hemoglobin is 8.3 (transfuse at 8) So he only received his pentanamine- antipneumonia, and Vincristine. His Cyclophosamide was held due to needing to be at 750 ANC. I did NOT let Owen know his counts have dropped as I think this causes him to worry. For now there is no plans to pull him from school. His neutrophils are at 38 so hopefully his counts are on the rebound and he will be back to normal for chemo next week. Owen slept through the whole appointment, I woke him up to walk out the door at 3 so he didn't realize he did not receive everything.
Tonight is his open house at school so I will get to meet his teachers.
I am asking everyone to say a prayer for our cousin Dejah in Canada. His link is at the bottom of the site. He has a rough couple of months coming up with chemo, surgery to remove a couple of the spots (one near his aorta) and radiation. This will be a long and hard process on him and the whole family. They received news that NO family wants to hear... with a Wilms tumor relapse the chances of it coming back again and again are higher. CANCER SUCKS so bad. No little child should be living the lives that our children are living. We all put on our happy faces and go through the motions but it takes its toll on all of us but what choice do we have??? They need all our hugs and prayers right now!
Another Prayer request for our cousin Matt Wilson (Missy's Husband) he had back surgery on the 29th and has just been readmitted today for a bad Staff infection. He has been in surgery since 4:30 and as of 8:30 was still in! I will keep you updated...
Saturday, September 8, 2007 6:31 AM CDT
Thr first week of school is over and Owen was 3 for 3! I think there was mini nurse visits each day but thats ok! Friday they sent him to the nurse - he looked like he was over heating in the hot weather outside. Owen does not deal well with heat!
Friday night we went to Owen's welcome back to school picnic for the 4-6 grades. The boys had a great time. Jake never did leave the playground to come eat!!! Owen went with the walawenders to get in line and finally Tyler was ready to eat. He took a HUGE plate of salad and a hotdog and a couple cookies. As we were finishing eating Jake came up from the playground - face beat red and blotchy!! He had been having a blast!
It was great to see Owen sitting with his friends and laughing and being back in the groove. I am hoping he is settling in and realizing he is OK. He has not run a fever at night now for 2 nights so looks like whatever was there has finally worked its way out.
No plans for the weekend. Tuesday is therapy and then the doctors. Friday Owen is going to Rochester. One of his Camp Good Day counselors had nominated him to be 'honorary coach' for the Rochester Hornets VS St. John Fishers football game. He will be the coach on the St. John Fisher side. So Friday he has to be there by 4 for the walk-thru practice and then Saturday at 3 to meet the team and get all set for the game at 7:15. He is really excited. I am hoping his counselor will bring him Friday - he had volunteered to but I had planned on going, now Friday is Jakes welcome to school picnic at Cayuga.... wow too many things!!!
Have a great day!
Thursday, September 6, 2007 5:10 AM CDT
The first day of school went great for everyone! The excitement was in the air and everyone was ready and waiting for the bus in record time!
Jake boarded the bus with Owen and started to follow him towards the back. Mrs. Halsey asked if that was ok.. I boarded the bus and called Jake back up to the front. Although it would have been allowed since he had an older brother, Owen would have freaked having his little brother sit with him! Jake was just as happy to sit in the front!
I did not even cry! I thought for sure I would but seeing Jakes beaming face and excitement just made me smile and laugh! Mom and I went shopping after !! Wow I have not been shopping with no kids in so long - course this could start to hurt the purse when my flex days restart to spend them in the stores! I was home by noon, as Jake only has 1/2 day. His bus didn't arrive until 1:00. He still had the big beautiful smile as he got off the bus! He had a great day, and worked on patterns.
Owen arrived home next in a great mood and even asked Jake all about his first day. Owen did go to the nurse though.. siad he stated getting really hot and thought he might have a fever. It was just a warm day and I am sure everyone was warm.
Tyler arrived hom and was bubbling over - told me first thing - "Mrs I"!!! They said he had a great first day and is even gone from their classroom from 10-12:30 for specials, SS/ Science and lunch.
Took Tyler to LabCorp to get the new thyroid tests done to check for the hyperthyroid. He did awesome. They took 6 tubes of blood! So for now we stop his thyroid medicine until we get confirmation on these blood tests. He asked for FrenchFries and after that awesome display - just one little 'ow' as she put the needle in ( but did not move) he deserved it!!!
So we roll into day 2. It will be so nice to have this schedule back for everyone! Tonight I am going to dinner with the Mom's from 5C and 7H. I missed the last one so I am looking forward to getting back. We are going to the Retreat in Liverpool tonight.
Have a great day!
Tuesday, September 4, 2007 6:59 PM CDT
Owen started the day out with an upset stomach. Wasn't sure if it was more just being grumpy of having to get up early or what... So off to Darren for his therapy session. As we were coming into Auburn, Owen said he just couldn't do it. He felt too sick to his stomach. I stopped by and talked with Darren. We walked out to the car and Owen was sound asleep. Want to stay on schedule as Darren is making progress with Owen and Owen is starting to open up. I will reschedule for later this week.
By the time we reached the doctors the benadryl had kicked in and he was feeling good. In fact he was full of himself. He practiced spit balls and his nurse was so helpful in showing how to shoot them farther by putting them in the straw close to his mouth and not at the far end. Oh such good education!!! LOL! Doctor still feels the fevers are just a normal viral thing and will work there way out eventually. Monday he did not spike until 8pm (101.4). Today he did not spike until 7:30 (101.6) so still going on. I got off a week somehow on his schedule. Today he started back on IV chemo. He got Cyclophosphamide and Vincristine, followed by an hour of fluids. He will get this the next 3 weeks and next week he will also get pentanamine for his anti-pneumonia.
We were on our way back to Auburn when Mom called. Her road was basically blocked from Franklin street to get out. By the time we got back the traffic was less and we made it to Mom's to get Ty and Jake. A huge fire was going on somewhere.... turns out it was Highland. It totally burned to the ground! This is so sad... it was were Chris and I were married and we were the 1st wedding after the renovations and addition was put on in 1996. Being the nosy people that we are... we drove up one of the side streets and walked down the golf course to the ninth tee to see. I think half of Auburn was there!!! There were still embers burning and the firefighters were hard at work from all over the county. www.wixt.com
So I guess we had a little bit of excitement for our last day off!
Looking forward to school tomorrow. Tyler and Jake are especially ready - they are so wild the last few days. They are in need of getting back into a schedule! I am off to get them all into an early bed tonight!!!
Good night!
Monday, September 3, 2007 10:01 AM CDT
Happy Labor Day!
Owen continues to run fevers 1-2 times a day. Seems they are first thing in the morning when he gets up and then again at bedtime. He feels fine for the most part except when spiking. So far today he has not spiked but is climbing (99.8). But cultures are clear so seems it is just some viral thing.
Tomorrow he has therapy at 9 and then a doctor appt at 10:30. Tomorrow he gets his pentanamine, his anti-pneumonia medicine. Starting next week is the start of our last month of in-clinic chemo. He has 4 weeks of this and then the rest of the way is pills at home and montly doctor visits. That sure sounds good!
Not sure what we will do today. Trying to think of something low key but fun for the end of summer. I think they are all ready and very excited about school. We saw one of Tyler's aid (Mrs. I) walking the other day and yelled out the window to her. Tyler has been talking non-stop about her since. "Mommy... I see Mrs I!!!" He gets so excited and tells each of us "Mrs. I!"
Hope you all enjoy this beautiful day!
Saturday, September 1, 2007 2:52 PM CDT
Things are going ok. Owen spiked another fever last night, and then again first thing this morning. He is starting to climb again now (at 100 right now). Talked to the doctor and nothing has grown in the cultures so that is a good thing. He feels fine except for when he starts spiking and then he is very achy which is normal for a fever.
So far now we just continue to watch him. Owen and I talked for quite awhile last night. I told him he most likely just has a 'normal' childhood virus. He will not be immune to getting the regular sicknesses. Just like Ty and Jake get sick and have to see the doctor - he will too. The difference is - he has to have blood cultures done and just monitored closer to make sure it is nothing more serious. But looks like this is just a 'kid' thing and NOTHING to do with cancer. I think he is feeling better about it and not so freaked out. He gets so worried and stressed and who can blame him... he has quite the history!!!
Owen got his hair cut today!!! First time since he relapsed in January '06!!!! His hair wasn't long but he needed to have it trimmed and just shaped up. So this is a great milestone - feels like the first baby haircut all over again! He was sad though as it took out his blonde highlights he had from the sun. I did buy some highlight color to re-do them, hopefully I don't totally mess him up!! He is excited to have them back for the start of school - hmmm who is he trying to impress?
So continue to pary the fevers stay at a minimum - none at all would be better!!! But as I said at least he is feeling good for the most part and that is great.
Have a good night!
Friday, August 31, 2007 7:09 PM CDT
The day started out rough. Owen woke at 4am screaming in pain that his port hurt and to get the needle out. We always leave him accessed so that he can come home and take a shower and loosen the tegaderm bandage so it comes off easier. He didn't feel like showering at 11 when we arrived home which is no big deal the needle can remain in for upto a week. So we quickly got the bandage off ( no shower) and took the needle out, he immediately felt better. He said it was stinging/ burning him, which concerns me that he could have a port infection. Please pray this is not the case... he has 8 months left and we don't want to have to remove this one and have more surgery to implant another.
He fell back asleep and at 6am woke up again with a very upset stomach and a fever of 101.2 I got him benadryl which he immediately threw up. So I got him more and some tylenol. He fell back asleep again and basically slept all day. He stayed with Mom at here house today and just slept. No more fevers though. The antibiotic he got last night lasts for 24 hours so we are coming up on the 'witching' hour for that to wear off. Mom said she felt part of his sleep was due to not feeling good and part depression from 'here we go again...'
I did talk to the doctors office and they want to just keep an eye on him for now until the cultures come back (24-48) hours, unless he seems to get worse. So for now we hang out and watch. He is up and about now and feeling better so fingers crossed....
I got a call today from Dr. Bright on Tylers recent blood work. He has a hypothyroid (under active). However his last blood showed he was hyperthyroid (over active) which is not good, but it also showed he is still clear for Celiac disease (yeah!) She wanted to make sure Tyler could not have gotten into extra doses of his thyroid medicine. Actually it would be just the opposite - he is finding the pills in his food and politely searching me out to give them back to me! So he is most likely not getting enough. So we will repeat his blood work, and stop his current thyroid medicine and go from there. I am not sure of all the downs of hyperthyroid - but you would rather have the hypo. The hyperthyroid could be a sign of Graves disease. I started to look this up on the internet and quit deciding I didn't need the stress of thinking about this until I need to.
So I guess we have enough on the medical front for now! Hoping for a quiet night tonight!!! Good night.....
Thursday, August 30, 2007 9:56 PM CDT
The dreaded fever came... seems as soon as the words leave my mouth... I told someone today that fevers and hospital stays would be a minimum if at all!!!! As I was pulling into Mom's to pick up Owen my phone was ringing - Owen had a fever 101.7 Maybe this is why he has been so moody lately something is brewing.
I called the doctor and we had to go to the ER to get blood cultures and an antibiotic and would most likely return home. Owen just sobbed knowing we were headed to the hospital and especially the ER as that is a forever process. We had to bring the boys home first and luckily Megan was able to come over to watch them - THANKYOU MEGAN YOU WERE A LIFE SAVER!!!!!
Next we had to head to Wegmans to pick up his nummy cream prescription, I was out and he needed to have the cream on to get accessed at the hospital. So needless to say it was close to 8 when we arrived at University's ER. The got us right in ( leukemia has it's plus there that they take care of him right away!) The nurse came right in and was setting up for the IV blood culture and also one from his port. Owen asked the nurse if I could access his port, which she gladly agreed to. So I did that access and blood draw and she put the IV in and did that blood draw. She was awesome on that. I told Owen - see Mommy is good at the port because I do that all the time, and she is an expert at not hurting you for the periphyrl line. The antibiotic was up and running and blood counts were back by 9:30! His WBC actually went up since tuesday from 2.6 to 3.7 so that was great and got us our ticket home. We were out the door by 10. Wow a 2 hour ER stay! Owen and I had a bet - he said 1am and I said 2am for how long - guess we missed that by a long shot!
Tomorrow I have to call the doctor and see if anything has shown in the cultures yet (usually they will take 24 hours though), and if he needs to stay on an antibiotic or not. So heres to hoping the fevers stay away and no bacteria is growing.
I will keep you posted!
Tuesday, August 28, 2007 7:29 PM CDT
All is going well. Owen has been in quite the mood though since Sunday. He cries at the drop of a hat and is just very moody. I thought for sure it meant his counts had dropped and he was coming down with something. I did do counts today though and he is still okay. His WBC is 2.6 and ANC is 2200 so still very good for him. He has not crashed out this month on the pills, I am excited and nervous all at the same time... why all of a sudden does he not crash? Although every week he has gone down so it shows the chemo is at work just not doing the damage it usually does. Next week we start back up clinic visits every tuesday for a month.
Tonight him and Tyler were going to stay at Grandma Pats, that way Grandma didn't have to get up early and Jake and I would just get on the bus for his preview day. But again Owen got very upset about thinking about spending the night somewhere. He said he couldn't, he would get home sick, he was absolutely in hysterics. Grandma tried to talk to him today again, but he said he gets too homesick and he couldn't do it... She reminded him how he spent 3 nights just a week ago when I was away, but he said that was because there was no choice and he realized that but he just couldn't do now. I am not sure what to make of this new anxiety.
He came to me tonight and apologized for his moods the last couple of days. He said he didn't know why he was so moody and grumpy because NOTHING was bothering him. He couldn't even talk to Darren about it because he didn't know what was bothering him, he felt everything was fine. He does have an appointment with Darren tomorrow at 2 so maybe they can uncover something.
Jake is VERY excited about riding the bus tomorrow and meeting his new teachers and seeing his classroom. Although he remembers very well that Mr. J has Dinosaurs....
Tyler will be headed back to the doctor tomorrow as well. He had an ear infection that burst. I took him to the doc a little over a week ago and he was put on an antibiotic. Although his antibiotic finished on Sunday and his ear is draining again... so looks like one dose wasn't enough. I think Mom is going to take him since I won't be home till probably after 12 from school and Owen has to go at 2. Makes for a lot of running.... so much for the day off. But tomorrow is golf night, last one of the season and our final dinner, so the day will end well....
Have a good night!
Sunday, August 26, 2007 6:26 PM CDT
Sorry gotten lazy on the picture taking. We did take some during this past week to finish off Owen's disposible camera but I have to develop them the old fashioned way.... So I will get those in, but I did take a couple of the Ty and Jake on the slip and slide.
Ah the end to a very nice week. The weather finally co-operated and we had a few beautiful days.
Friday was a quiet day. I moved mom's lawn while I was waiting for Jake to get out of his last day for camp. Tyler went grocery shopping with Grandma. Then we were just hanging out waiting for 11:30, and Tyler escaped out the house and through the front garage door. Luckily he only got in the car, thankfully windows were down and he was only ther about 5 minutes when we realized he was no longer playing in the bedroom! A bolt on the door is obviously going to be needed out of reach!
We went to the ice cream social at church. Ice cream is always a hit especially with Tyler! After that we returned home. Owen was going to see about inviting someone over to swim, but then decided he just needed a down day. Tyler, Jake and I spent most of the day outside. The pool was still quite chilly they didn't seem to mind.
Saturday morning I took Owen off to his friend Thomas' to spend the day and night for Thomas' birthday. They went to the Fun Junction in Syracuse (laser tag and video game room). Owen absolutely LOVED IT! He can't wait to go back. We have been trying to get there with our cousins but so far it hasn't worked out... Maybe before school starts.
I got the slip and slide out for Tyler and Jake and they had a riot. Jake kept going on his knees, and Tyler - he had his own style! I decided I would show them how to go arms first superman style on the stomach... Chris was going for the keys, figuring a hospital trip was coming.. but have faith I did it like a charm!!! I did it several times in fact, with no injuries, although my lessons did nothing, they continued to do it their way. We swam today - much better today at 79degrees. And just had a nice relaxing day.
At 11:15pm Owen called, he wanted to come home from Thomas', he wasn't feeling good and thought he had a fever but mostly was homesick. Off I went. Aggee said he was warm and very aggitated but as soon as he knew I was on my way he cooled right down and was fine. Anxiety? Not sure, but he has not spent the night except once all summer anywhere without coming home during the night (except camp). I will let his Therapist know and maybe he can get to the bottom of it. Owen says he just gets realy homesick and doesn't want to stay.
Today Chris and I gave the house a good cleansing and then headed over to Mom's so he could see the place. It is just so cute I love it! We went to Pet Depot, STaples ( and my school shopping is down in record time!) Then we stopped at an ice cream shop. We went to Kosta's, which has been converted to an outdoor BBQ, bar plus the regular diner it was. I was nosy and had to sneak in to take a peak at the renovations and it is really nice! The counter half of the diner was converted to the bar and is all oak and tile floor. The other half is the booth and table section and is the same.
Back home for some playing outside before bed and should be about tubby time and bed time soon!
Owen has been very whiny today, not sure if it is the full week of activites or if his counts are starting to crash. We'll see what the next few days bring.
I have back to work tomorrow (boo-hoo)! Wednesday is Jakes pre-view to Kindergarten day. We ride the bus in, meet his teachers, classrooms etc. So I will be taking Wednesday off. But other than that it is back to normal.
Have a good night!!
Friday, August 24, 2007 5:46 AM CDT
Good days continue but boy did we have a horrible weather week!
Mom is all moved in. That went really smooth! She hired moving people so the big stuff and all the boxes were moved to the house in 2 loads. They were awesome and to have all the furniture put in the correct rooms, bed set up etc was great. I had one truckload of bags of comforters, blankets, pictures and stuff. Emily and I set to work unpacking as Mom ran back to her old house for the carpet cleaners. By the time she returned, the kitchen was unpacked, beds made and living room put together! She made it too easy with all the boxes labeled and organized. She felt so good to be able to come in and not have a bomb on her hands for days! We got alot of the garage unpacked and the shed loaded too so by the late afternoon she was in great shape like she had lived there for years! Her first night went well and she was very comfortable. I think she is VERY happy with the move!
Yesterday we picked up Thomas from religion and headed to the Zoo. We were all the way in the back corner when the rumbling started... By the time we made it to the penguins the rain was coming down. Tyler was going crazy as he hates to have it rain on his head. Course all our rain gear was in the car since it was nice when we arrived! We decided to make a run for it instead of hanging at the penguin house. Once in the main building we hung out for awhile hoping the rain would quit... no luck. So Tyler and I with newspapers on our head ran to get the car. We came and picked Owen, Thomas and Jake up at the front door. Course I was going the wrong way on the Zoo road and had the park ranger knocking on my window to let me know! I think he was excited to have to turn on his flashing lights and have something to do!
We stopped at Friendly's on the way home for lunch. Then stopped at Mom's new house so the boys could see it. They loved it and were busy checking out where all their stuff was!
Back home the boys just played and later went swimming - it was only 70 in the pool! These last few days have certainly done some damage to our 84 temperature!
Today we are going to church for the ice cream social and then plan on just a home day. It is 'suppose' to be 95 and sunny today but so far it is really windy and looks like another rainy day! I'll need another week off so I can have a 'summer' vacation!!!!
Owen continues to feel well. His legs are bothering him alot but he has also been doing alot of walking lately. I have an appointment on the 18th with the Orthpedic, but I might have to change as I realized that is a tuesday and is Clinic day for chemo. I will check to make sure they will be able to get us in and out!
Have a good day!!!!
Wednesday, August 22, 2007 5:55 AM CDT
Busy and fun days continue.
Monday - Owen, his friend Dan, Tyler and me headed to Darien Lake. Despite the cold rainy day we had fun. Owen did ok with the walking all day. He was very slow and had quite the hobble walk but was determined to be there. He said he wasn't in pain, just stiff. Sometimes we would get talking and kind of pick up speed when he would here the call and Owen was way behind... oops sorry O! We hit a few of the rides with water first - shipwreck falls, the log ride and grizzly run. We did those a few times each and then our intentions was to head over to the water park but we were way too cold to stay in the water!!! So we dried off, did some dry rides and then had lunch. While we were waiting for lunch to arrive - I ran to the car and grabbed sweatshirts! Then the rain started, only a mist at first so not bad. We continued to run from ride to ride. Tyler was in his glory going on everything he was able too, and crying when he stood next to the measuring stick and seeing he was too short! Owen finally got the courage to ride the Viper - his first upside down roller coaster! He loved it! Him and Dan went on it 4 times! I even purchased one of the pics to go with his collection from Disney - so he could show Daddy he finally did it!
Near 6 o'clock we decided to buck up and do the water slides we were unable to do due to lines last time - there were NO lines today at 65 degrees and rain!!!!! We got dressed and walked over. Tyler ended up backing out. He was wrapped tightly in a towel and had no desire to remove the towel and get in the freezing water again. He kept saying NOOO - cold. Although I wanted to do these rides I was half glad I didn't have to freeze. Dan and Owen went on a couple slides and then off to Big Kahauna the raft slide. Then they did the Tornadeo - Tyler and I were allowed to go right up on the bridge since there was no people and watch them shoot out of the tube and up the side of the huge cone slide. It looked like an AWESOME ride. Owen and Dan were grinning ear to ear - although a big wave of cold water came down on them as they slide down - brrrrrr!. They dried off and hit the Predator - wooden roller coaster one more time, as I got everyone hot chocolate and we headed to the car - heat on full blast.
Jake spent the day at Papa W's and Grandma Lee's. He loved it although with the cold and wind he wasn't able to hang at the shore line and throw stones like he loves to. He kept them busy though! They couldn't believe how he just goes, and goes, and goes... and never stops talking! he finally fell asleep on the floor playing marbles. Thankyou for helping out!!!
Yesterday we went to Chucky E. Cheese. The boys loved it! I really liked it! It was really nice - each kid gets a stamp on their arm with a number to match the same on my arm. It is florescent so no one else can see it to copy it. This way you can leave with any children but your own and they are at the door monitoring all the time. This was very nice as I couldn't find everyone half the time, they were scattered everywhere! Tyler mostly liked the playset of tubes and slides to go through, pretending to be on TV and the roller coaster simulators. Jake liked the slides as well and then some little kids video games. Owen did everything and anything. It certainly is a video haven and kids dream!
We headed out around 3:30 and went to Fairmount to play at the miniature golf course there. It is a very cute course and we had a lot of fun. I can't believe how busy it is there! Then home again, tired and ready to relax! Whew it sure is hard work being on vacation with the boys!
Sure wish the weather were a little nicer - it IS August!!! Chris had told me that the heat was turned off it the basement so if I turned on the thermostat it wouldn't work - I looked at him and said "The first person to turn on the heat in this house in AUGUST is in BIG trouble!!!!"
Today is a day of rest for the boys. The are going to Nic's today as I will be helping mom move. I think they are in need of a little down time though - me too!
On the medical front, Owens counts continue to be good. He has done awesome this phase of pills. He is still on normal dosage, no reductions have been made. His counts are slowly falling each week but not to low levels. His WBC this week was 3.8 and ANC is still over 3000 so holding great!!!
He lost a tooth last night. It has been real loose and really bothering him. He finally just yanked it out last night! He is looking forward to the tooth fairy coming! He still believes in everything, although he is tetoring on things I think. Being back in school full time this fall will probably be the end of his belief! I think that is why he still does believe in Santa and stuff - due to not being around as the kids compare stories and realize there is no Santa or Easter bunny...
Have a good day!
Sunday, August 19, 2007 6:56 PM CDT
Good days and fun filled days continue.
Saturday we went to Mackenzies birthday party. It was a fun filled day with lots of swimming. It really wasn't cold there as they are surrounded by woods so the wind was blocked and it was actually hot. I forgot Tylers bubble but he made due with a little bit big life jacket. At one point he had me take it off, then went and jumped off the diving board and swam to the shallow end! He then wanted it back on to go back and play more. I was so proud. He can swim, but is reluctant to let go of that last bubble so I was glad to see him want to do at least one jump restriction free! It was good to hang with the cousins and catch up, and just visit.
We headed home and then around 7:30 headed to Papa Fred's for dinner. My Uncle Alan has been here since just before the family reunion from Maryland and is going home soon, so it was the last hurrah! Tyler and Jake were getting very wound up and wrestling too hard on Papa so we had to calm them down. Then I go and peek in the livingroom and there are the Uncles teasing them and egging them on!!! Hmmm know I know who is to blame!
Chris went golfing with the Uncles and Leanne today at Greystone. I opted not to go, quilty mother syndrome. I knew it would be along day leaving at 9 and not getting home till probably 7 or 8. I had promised the boys (course Owen would probably be the only one to call me on it...) that I would now be all theirs for the next 10 days except Wednesday - I have to help Mom move to her new house!!!!! I am glad I didn't go though the boys and I had alot of fun today.
Started by cleaning - ok not so fun - then off to the mall. Owen still had almost $100 in Game Stop gift cards from his birthday and christmas and wanted to trade in his nintendo DS for the nintendo DS LITE - he can give you a list of the 'benefits'. It was still going to cost him $70 but he was getting $60 for his... he was sure, and it was his money and I was shocked he still had so much left. We headed to the game room after for a few games, then off to McDonalds for lunch. And yes I took them in!!! Owen wasn't happy with the superhero miniature he got with his meal and tried to get Jake to trade who would have nothing to do with it, he liked the one he got. Owen was begging and no go. Finally Owen winks at me and says "I know Jake, lets go play and race our guys down the slide" Guess Jake has been 'had' one too many times by Owen. "NO! Why so you can steal my guy? Thats not nice Owen" They were just too funny.
Had one minor incident... Tyler had an accident while playing - guess he didn't want to pause playing. The problem is Tyler does not like to be in wet pants at all anymore, so boom off were coming his pants! Oh my goodness... My mom had just asked me what if Tyler started stripping at school if he had an accident... oh Tyler wouldn't do that... Hmmm guess I was wrong on that. Luckily I had dry clothes from Missy's still in the car that I could change him into.
Home for awhile and then we headed off to the Owasco park to play. Jake met another little boy, probably about 4 and they hit it right off. So Jake and 'his friend' were glued to the hip the whole time. Tyler and Owen spent alot of time on the swings, and then the tire swing. Tyler shreaked with delight as the spun round and round. Owen got the biggest kick over 'the simplest things in life can make Tyler so happy' Yes it is a wonderful thing!!!
We headed to Green acres for ice cream and then home again. Tyler and Jake swam and Owen took a rest. He was reading his book and asked for Hot chocalate. When it was ready I called him to come down stairs... no Owen... I call again... nope...I headed up and he was fast asleep face first into his book. Hopefully he will sleep tonight. Tomorrow is our trip to Darien Lake and he needs to be rested.
Jake starts camp tomorrow at the YMCA. It is Carnival week. Papa W and Grandma Lee are going to pick him up and watch him until Chris gets out of work. He is already thinking of all the good stuff he can do at their house! Tyler asks about every 2 hours "Park? Rides?" He is so excited, he just loves the amusement parks.
I am really enjoying the time with the boys and am looking forward to the week with them, although Owen is trying to get 100 days of activities into the next 7!! Wouldn't it be nice to win the lottery and be able to spend all the time with them! Course I say that until the fighting begins, then I ask 'when can I go back to work'!!!! Can't win LOL
Have a good night!
Saturday, August 18, 2007 6:36 AM CDT
All is going well.
I safely returned again from Charlotte with no issues. I had an awesome time at the conference seeing many co-workers across the Nucor Divisions that I have not seen for a couple years as I have not been since 2005. We had many laughs and late nights, but I needed that!!!! The conference was good too - LOL! I must have been exhausted driving home though - I missed my exit! All of a sudden I realized I passed a service area that is in Port Byron and I needed to get off in Weedsport. I could have driven all the way to the next exit but I opted for hoping not to get caught and did the illegal U-turn!
Owen did a double tutor session on Thursday so he wouldn't have to go on Friday and could be home with me. He had good days playing with Grandma Pats neighbors while I was gone and felt good for the most part. One night he got real whiny and achy but Mom thinks most of it was missing me. Tyler was real quiet at the sitters on thursday and wouldn't eat. As much as I enjoyed going away and having some down time - it is hard on the boys, especially Tyler.
Friday we went to Indian Head golfing, yes me and the three boys! They had a blast! We only golfed 3 holes, captain and crew fashion, as Owen got too hot. I live for the heat and he is allergic to it I swear. I had to watch Jake though as he swings the club like a hockey club and on the first green took a big swing for the ball. Luckily he missed and I redirected him to a nice little tap motion! I think Jake and Tyler loved the 'jeep' ride (aka the golf cart) the best!
Next we went to the mall for lunch and then did some birthday shopping as Jake had a party friday night and we have our cousin's Mackenzies today. I somehow managed to get out without Jake getting into a raging tantrum over not getting something himself. We went to the game room and they got to play a bunch of games before heading home. Tyler loved the snowmobile game. You actually sit on the seat and it is vibrating like riding a real snowmobile and race against others. He was pretty good - 2nd place once and his final game he game in first!
Tyler is still doing awesome on the potty! When we were at the golf course signing in - he disappeared into the bathroom, so I went in to get him and he was in there going all by himself with no prompting! Then at JC Penney Owen had to go potty and Tyler followed him into the Men's room. I was outside calling for him and he chimed back - "Potty". Ok so I waited. He wasn't coming out... Tyler I call again - and he yells back "Wait momma, Wait". Owen comes out and Tyler is doing #2 in there! Bad part was I had to send Owen back in to help with the wiping... which he was totally freaked out about.. but he was in the Men's room!!! But I am so proud of him.
Last night I took Jake to a birthday party. Thomas was in Jakes FOSPA class and will also be in his kindergarten class. There was several other little boys there who would alos be in his class, so somehow we got them to all sit for a picture - the Class of 2020!!! Jake had fun, although he kept wanting to 'buy' alot of Thomas' toys.
I took Owen over to Walawenders after to watch the premier of High School Musical 2. He ditched me - I have been looking forward to it too! So Chris was laughing at me as I watched it by myself smiling and bopping to the music! I just love that movie. We are going to see the ice show in January. When I picked up Owen he was struggling to get up the stairs. Said his legs and back were stiff and achy again. So I helped him up and then as he was getting in the car the door came back down on him and crushed him a little - he was so upset...
Today we are off to Mackenzies house for her birthday party, so should be another fun filled day!
Have a good day!
Tuesday, August 14, 2007 4:35 PM CDT
Owen had a crummy afternoon yesterday. His back was really bothering him. I think it may have been from golfing, playing football, swimming, just lots and lots of activity over the weekend. He did take a pain killer when I got home from work and that seemed to do it.
This morning he woke up feeling crummy again, just mostly tired but his legs were bothering him today. He slept all morning until I picked him up at noon, and then slept the whole way to the doctor. He seemed fine there except when he had to walk, then he winced in pain that it really bothered him. His counts are still good. His WBC is 4.6 and ANC is 3500 so he is good in that aspect. Just needs to make me worry as I am boarding a plane to Charlotte at 7 tonight!!!
I am going to call the Orthopedic doctor again to take another look at his legs. He walks with his feet pointing out all the time. We have been trying to get him to concentrate on walking with his feet straight but he says that is uncomfortable. The way he walks could be causing some of his back trouble and leg pain. So we'll see if the orthopedic sees anything or if we need to do anything to straighten his walk out.
Hopefully all stays quiet, I return thursday night at midnight. Then I am on vacation until the 26th - yeah!!!!!
Have a good night!
Sunday, August 12, 2007 5:56 PM CDT
We have had some busy fun days.
My trip to Charlotte was uneventful for the most part... I was delayed 1 1/2 on the runway due to air traffic, but with no connecting flight to contend with it was ok.
Friday was the Pennafeather golf tournament and nothing but a lot of fun and laughs to be had.
Saturday we were up bright and early for the family golf tournament. Owen was out of bed and ready to go with no prompting! I think Owen really enjoyed participating. He was getting frustrated at first because he wasn't hitting the ball that great (a true golf attitude). I explained to him that chances were we weren't not going to use his drive or fairway shots. He was not going to outdrive me, Papa, or Uncle Steve. He would be a big help when we got close to the green. I think this helped as he settled and was quite pleased to be the one who would put the ball in for par... yeah no birds!
Back to our house for an afternoon of fun and lots of friends and family. The kids had a ball all day in the pool, playing football and just hanging out. Owen just looked so good and was so happy!!! My cousin Ted was here from Florida, I haven't seen him in 25 years. My cousin Karen also was here, she has just moved back to the area. So it was great re-connecting with everyone.
I was up bright and early and finished picking up and packing the things to go back to Dad's. It really wasn't bad, as Leanne had done alot the night before - thanks!!!!!! So everything was done and house cleaned by 11 and Tyler and I were hanging by the pool!
Thomas came over today. We haven't seen him in a while and Owen said he wasn't too tired. He would do his homework first so he wouldn't be tired later for it... guess I can't argue with that logic AND it was his idea I didn't even think about the homework when he first asked!! Thomas, Owen, Ty and Jake washed my car for me, and then it was an afternoon of swimming. Thomas and Owen made a mini-movie on Owen's Ani-Movie Maker. It was nice to not spend the day on game boys!!! They are back in the pool now and then we will be taking Thomas home, I think we are all in need of an early bed time after this weekend!
I am headed back to Charlotte Tuesday night and return real late thursday night. So hoping for another smooth flight. ( I did get direct again!)
The boys are off to Nics and my mom's again this week with the crazy schedule I have.
Owen has a doc appointment tuesday for his anti-pneumonia med by IV and a checkup.
Have a good night!!!!
Tuesday, August 7, 2007 7:04 PM CDT
Things are going well. I drew Owen's blood for counts today. He is still looking good. His WBC dropped from 13 last week to 7.1 this week but last week was super high due to the steroids. Can see though that the dose off methotrexte pills last week certainly brought it down fast. He has no changes in meds at this time. As long as he stays above an ANC of 500 and he is still high up there at 6300.
Owen had therapy today. He is not doing well at writing in his 'daily' journal at all. The idea is to write something everyday good, bad, a note about the day anything! I have already talked to him tonight that this needs to be done.... He fell asleep tonight from 5-7:30!!! I don't know why he was so tired but I guess he needed it! Tomorrow he has tutoring.
Tyler started Camp Columbus this week. So far he is liking it. He is very tired at camp though. I think they do alot more moving and activity than Freedom Camp. He even took an hour nap at camp today! There was a picture in the paper tonight of the fireman coming to camp and turning the hoses on. We are able to pick out Tyler (or we think it is him!) in the picture but it is so tiny we could be just imagining it looks like him. Kim is his counsellor so he is in his glory as he just LOVES Kim.
The boys are back at Nics this week. Owen is enjoying it as there are other kids there so he has someone to play with. He is such a social person he needs that interaction.
Tomorrow night I leave for Charlotte. Yes I KNOW I said I would never travel again... and it is another 1 night deal... I did get direct flights in and out so I am hoping all goes smooth. I have to go back next week again for 2 nights. Then I am on vacation for a week - YEAH!!! Not sure of our plans yet. Probably home time, and some little day trips here and there.
This weekend is a big weekend. Friday is my all time favorite golf tournament - The Pennafeather. Although no one will recognize us this year... we are going as 'normal' golfers!! We usually have some theme to our team, and yes it is only our team that does this but we do it anyway! Saturday is the big Polish Open and party at our house following. Owen gets to golf in it this year since he is 10 so he is quite excited about that.
Hopefully I will have time to put an update in the next couple of days but with travel and the weekend ... so if I end up not updating, don't get worried we are most likely just enjoying ourselves!!!
Have a good night!
Friday, August 3, 2007 9:37 AM CDT
Been a couple of up and down days but things are well. I took Owen to the doctor on wednesday as he woke up with a very sore throat and didn't even want to talk. Since he had counts I was able to take him to the pediatrician. They did a strep test which was negative, but he does have mouth sores starting in the back of his throat and is most likely the source, so he will start doing mouth swishes.
Yesterday he went to the yacht club with the walawenders. I ended up cancelling his therapy because he wanted to stay. It was short lived though as he got over heated and had to come home. He was white as a ghost and just exhausted. He took a couple hour nap and felt fine. Makes me a little nervous for our upcoming weekend out in the blazing sun! I was suppose to go to dinner with the moms on 5C, but cancelled since he was just waking up and wanted to make sure he was ok and it had just been the heat. He has had a couple of bloody noses the last couple of days too, most likely from the heat as well as his platelettes are fine.
Last night we went to the McLoughlins camp for a couple hours. Tyler and Jake spent the night throwing stones in the lake and Owen and the Esposito boys enjoyed TV, and then they all got to romping and running just as I burst the bubble it was time for bed...
We are off now to Seabreeze, and then to Darien Lake. We will just play it by ear and take it easy and see how Owen does. But hoping for a fun filled mini-weekend!
Talk to you Sunday!
Tuesday, July 31, 2007 7:44 PM CDT
Official results are in and the bone marrow is clear!!! Yippee, I can relax now, I get so nervous waiting for those results with all his bone issues.
I took blood counts today and his WBC was 13.1 (sky high) so that caused me to be concerned. I spoke with the nurse though and she discussed with the doctor (ours is on vacation so another doctor reviewed) and she felt it was due to being on steroids and not having started the methotrexate. Methotrexate starts tonight and steroids are all done (yeah!) She then confirmed the bone marrow was clear.
Owen felt pretty good today and is actually still at his friends Sean where he has been since late this afternoon - guess he must be feeling good and having fun which is great he really needed it after so many down days.
Have a good night!
Monday, July 30, 2007 6:46 PM CDT
Blood Drive at Nucor is next Tuesday the 7th - see above for details. Please consider donating - blood supplies go critically low in the summer. Thankyou!
Finally Owen had a decent day. He started hurting last night with an earache and I thought he would go to the docs today. He woke up though and his ear was fine, but was feeling crummy with his headache and backache. I did call the doctor around 2 and left a message but did not hear back from anyone... hmmm.. I hate that it gets my mind whirling as I asked them to call me with the Bone marrow results as well so I start wondering.... OK stop they just didn't call back....
Around 3:30 Owen came downstairs and was feeling good! He stayed downstairs until 8pm tonight when he started getting a little achy, but I'll take that he was finally up and moving a little bit!
Jake and Tyler are just fishes, and rarely leave the pool!
This weekend we are going to Seabreeze on Friday and then continuing up to spend the night at Darien Lake and do Darien Lake on saturday so hopefully all is well and we have a great mini family vacation!!! We don't get to do too many of those!!!
Tomorrow and wednesday Owen has tutoring so that will be good for him.
Have a good night!!!
Sunday, July 29, 2007 7:08 AM CDT
Things continue to move slow here. Owen is still complaining that his back and head hurts. He swears they did something wrong this time!!! This is much longer than he has ever hurt before.
Yesterday Jake had his best buddy Logan birthday party. Both him and Tyler were invited. The boys spent the day swimming and playing outside and water balloon fights. Tyler did find the movie rack and Steve was nice enough to let him have a break and watch a movie. I swear Tyler can smell them!!! He had snuck through the house to the downstairs (it was a raised ranch) and found the movies and brought one back up. I had been watching him as I knew he was trying to get in the house... but the stinker made it in anyway somehow!
Jake was swimming up a storm in the above ground pool with no bubble!!! He swims with no bubble here now but he can touch the bottom, and there he couldn't! What a long was from last summer being glued around my neck!
Dan invited Owen up to the camp and he wanted to go. He didn't last long though. After being up for only a short time his head just started pounding and he was in tears and wanted to come home. I give him credit for trying but I just can't figure out WHY he is still hurting so much!? If this continues through today I will call the doc tomorrow. Should be hearing the results by monday as well for the detail bone marrow test.
Other than that no real plans for today... sure hoping it clears off and it is a nice day to hang outside!
Have a good day!
Thursday, July 26, 2007 6:05 PM CDT
Happy 5th Birthday Jake!!!!! And Happy Bithday to you too Cindy - kept my word and no work celebration! :-)
Owen has had some rough, sore days. Yesterday he was hurting most of the day. He did manage to get a little bit of tutoring in, although he was flying high on Red Bull. Normally after a spinal tap he will drink Mt. Dew for the headaches (caffeine is good for them), but Uncle Steve introduced Owen to the ultimate drink for caffeine.... have to thank him for that one! Hopefully today will be the last of them. Owen had a birthday party yesterday but called me as I was leaving work to get him - that he was not up to it.
Today he seemed more in pain and headaches than yesterday. Tutoring was cancelled. He wanted to keep his therapy session though but only lasted about 10 minutes and was just not up to be there or up and about.
I had planned on taking the boys miniature golfing and dinner tonight for Jakes birthday but that was not in the cards either. Luckily I did not open my mouth and say this ahead of time to Jake so it was no big deal not to go. Yes I think I am learning!!!
Megan is watching the boys this week and they are certainly giving her a run for the money... between Tyler in potty training and accidents... yes in the house... and just my messy little boys she is getting a work out. I have learned not to stress that my house is a disaster zone within an hour after cleaning it, and cleaning is only happening once a week. Megan is taking care of that though - it drives her crazy!! LOL - give it another week Meg - you'll see why I shrug it off now!!!!
Chris is out of town tonight so we are waiting to celebrate Jakes birthday until tomorrow. Jake went with Grandma Pat today for a special day and got to pick out a new toy. They went to the fish hatchery too to see the fish. He was very excited about turning 5 - he is a BIG boy now!!!!
Owen received a package from our cousins (Joe, Lisa, Caitlyn, and Gaelon) in Maine. He got spiderman stick-ons for his room and a whole bunch of spiderman comic books!!! He is in his glory!!! Thankyou so much for thinking of him he put a bright spot in his day!
Have a good night!!!
Tuesday, July 24, 2007 7:24 PM CDT
FIRST - the preliminary view of the bone marrow looks good!!! Detail tests will not be back until end of week or early next week. But I am breathing alot easier. I was really really nervous over this one.
Owen received his Pentaminmine first on 5C because they were running behind on the surgery floor. So at 2pm we headed for the bone marrow and spinal tap. Dr. Cherrick came out and said it went well and she would take a look at the slide and call me around 6 with that and his blood work to let me know if the chemo pills starting tonight were a go. Well I was starting to panic as she had not called & what could that mean??? She didn't want to call with bad news - what?? Well my nerves got the best of me, at 8 she called - tied up on the floor - and gave me the good news.
Owen is feeling fine, a little bit of a headache which is normal. But otherwise fine.
I posted a few of the pictures from camp. I don't have too many to post of what is developed so far as Owen was the photographer and he is missing from most and then the pics are mostly just of fellow campers not of things at camp. But they are his memories so he was the one calling the shots!
Have a good night!
Monday, July 23, 2007 7:41 PM CDT
All continues to go well. Owen is settling in to the ho-hum life of being back home! Yesterday he went to his friend Seans grandma's for the day. He had a great time.
He has been complaining more of not feeling well but I think part of it is being home. He isn't busy all day long anymore and then his aches and pains seem worse or he just gets bored and 'thinks' he doesn't feel well.
Tomorrow is his spinal tap and bone marrow test. My stomach gets in such knots over the bone marrow test. Especially after the last 2 showed 3 then 1 bad cell. So it has been 9 weeks since his last one so this should be a good test for determining IF the inconsistent tests earlier meant anything. So yes my stomach is in knots.
Starting tomorrow he is back on pills (steroids for 5 days, methotrexate 1 day a week, and 6Mp nightly ) He will be on these pills for the next 4 weeks.
Tomorrow he will also get his once a month anti-pneumonia medication (pentanimine) by IV.
I will update tomorrow with GOOD NEWS.
Have a good night!
Saturday, July 21, 2007 6:00 AM CDT
Owen is home!!! It was so awesome to see him again. I was late arghhhh... I ran into 2 delays on the way over I was freaking out. I called to say I would be a few minutes late. I had about 10 minutes left to get there and the bus was just pulling in. Luckily Aunt Susie had come to meet the bus too and was there!! Yeah - thankyou Aunt Susie!!! I got the biggest hug, he looks great and the stories are flowing. We went to a late lunch with Aunt Susie at TGIF to celebrate his return. Here another spectacular thing happened. Tyler asked to go to the potty, so off we went - and it was for #2!!! Oh my gosh I am so excited - this is soooo great - I hope we have finally made it through the potty training!!!
Owen has so much to tell. He can't wait to go back next year. He was up early every day (7am) to go fishing. The last day - he ATE 2 worms 'because everyone dared him too'. Hmmm have to work on that one. But how gross!!! plus how much bacteria??? He was so proud though, and they really didn't taste bad he said!!!! He went on the race car ride. 3 different ones. A corvette (75mph), porsche (65mph) and then a race car (95mph). He said it was awesome! They rode go-carts yesterday but said they wouldn't let them go as fast as they wanted - I think that is a good thing! They did camp fires, and camp pranks. I guess they put a canoe in a cabin, filled it with water and TP'd (toilet papered) the room! They had a carnival and he won lots of prizes at the games. He did the rope climbing and obstacle course. He received the award for the 'cleanest' camper because he took 2-3 showers every day!!! He says it helped with his aches. I think the other reason might be the 'girlfriend'. Yes my little casanova has yet another girlfriend... hope Brooke doesn't find out! It was one of the counselors - he sure does like his older woman! He gave her one of his stuffed animal prizes, and even kissed her! He has her email and can't wait to talk to her again, he really misses here already!
He talked of their campfires, scavenger hunts, scary ghost stories and just on and on. It sounds like a great time and alot of fun and good friends. I am so happy he went and so surprised he made it the whole week! Just that one little 'lonely' moment but he had even called me the next day and was back to normal.
We stopped on the way home and got him new sneakers. He said his shoes were really bothering him there. Sure enough he is up another size. He got healeys, but not sure if we will put the wheels in with his leg issues, but I really liked how wide they were. They seemed to fit him so much better than the standard sneakers. He also used his giftcards & money ( i keep them in the car incase he decides to go shopping) from his birthday to purchase the Guitar Hero II at walmart for the xbox. It was a game they had at camp but requires you to move and play a guitar.
Finally arrived home at 8:30pm exhausted. Now I had to unload the car and start the task of unpacking. It actually wasn't too bad, just alot of laundry to do and alot of his prizes are just stacked on the counter for now to be dealt with later. He has several rolls of film, so I will drop them off today to get developed I can hardly wait to see them.
Today is Jakes last soccer game at 9am. Yuck I don't like the early one, Jake is definately not awake in these ones!
I will keep sharing more camp stories as I am sure we just are beginning to hear all the good stuff.
Have a good day!
Thursday, July 19, 2007 5:42 PM CDT
Owen called! It was a little after 10 last night when the phone rang. But it wasn't the call I was hoping for... it was the sad voiced Owen. He was home sick and missing me. I kept asking him questions about camp and trying to get him to talk but it was short answers and very sad. I told him I missed him too but it wasn't much longer till he would be home and he would be sad if he came home to the same ol' routine and missed out on all the fun still to come there. I asked if he wanted to come home and he said a little, mostly because he really missed me. So we talked longer and he agreed he needed to stay. I got a call from him today on my cell at 11 but I missed it as I left my cell in Chris' truck last night. But he sounded like my Owen again so I think he just had a temporary set back, something must have triggered his sadness. He said he is using a motorized wheelchair alot as there is alot of walking and it is just bothering him too much to do all the walking and then join the activities. I get concerned with how much bone pain he is still having. He has a bone marrow test on tuesday so that will hopefully put any fears to rest.
We did not make it to the birthday party. My brakes have been going, I first heard them on monday taking Owen to camp but last night they were very bad. Chris ended up getting my car from golf and left his truck so he could take a look. Today he had me go get the parts from Honda and he is fixing them now, I was basically driving with no rear routers! So needless to say a trip to Syracuse was not in the cards, but at least I will be safe driving to Rochester tomorrow to get Owen.
Have a good night!!!
Wednesday, July 18, 2007 7:58 PM CDT
Ok it is over 48 hours since I have heard from Owen. I KNOW this is a good thing, that it means he is having a GREAT time!!!! But I need to hear from him! I never in a million years would have thought this was the way it would play out. Owen calls several times a day when he is home.... so I thought it would be me that was fine with him going to camp and he would call all the time. Instead it is me pacing the floors anticipating a call from him!!! I am thrilled though that he is having a great time and this is exactly what he needed!
Otherwise things here are good. Tyler went to Roseland with Freedom Camp yesterday and had an awesome time. He was beaming when he got home. Jake is going to Nic's everyday and having a blast at daycare as mom is 'off' work while she gets packed to move to her new home!!! Yes she sold her house and is down sizing!
Tyler is still doing well on potty training, although #2 is an issue. But we are not going back to pull-ups we will keep working on that.
I had my sanity night of golf tonight and the boys spent the night with Papa Fred so you know that was a good time for them!
Tomorrow they have a birthday party to go to, so looks like another fun filled day!
Have a good night.. if I can sleep without hearing from my Owie!
Monday, July 16, 2007 6:00 PM CDT
The birthday party was a success. Both boys totally enjoyed themselves and were thrilled with the gifts. They grinned ear to ear as we sang happy birthday to each of them for their cakes. I will post pictures soon - my home computer is on the fritz so I haven't been able to do this.
Owen left for camp today. We arrived right at 10 but the bus was late they were waiting for it to arrive from Buffalo from that pickup. So we got to chat and find out alot about the camp. I got a layout of it - it is huge with so much to do. Mini-golf, go-garts, archery, fishing, boats, swimming, trampoline, rock climbing, obsticle course, wood working, arts& crafts, dress up bar... and even more! Then the bus arrived. I was fine as we loaded the luggage in the UPS van. Then we walked to the bus... my stomach flipped and I just started to cry. Owen gave me lots of hugs and kisses and got on the bus. I went around the side so I could see him sitting there. It was another 10 minutes before they actually pulled out and the tears just streamed! Owen looked real sad and I didn't know if it was because I was crying or because he was feeling the same. Finally they pulled out and we did our final wave...
My stomach was in knots all day as I kept staring at the clock wondering how he was doing. I just got off the phone with him and he absolutely LOVES it! They went to the chapel today, the pool for a swim test (he passed for the deep end), the music barn - where they are able to play PS2 music games. They just finished dinner and are off to rock climbing and miniature golf. He says it is really cool there and likes the kids in his cabin. He even has some gamblers in his cabin who like to play Texas Hold 'em!! It was so great to hear from him and I feel so much better know. He said he almost cried too when he was on the bus - he got real nervous as he boarded, but he is fine now. He is in for a fun fun week!
Have a good night!
Saturday, July 14, 2007 7:03 PM CDT
Things are well. Owen had tutoring yesterday and came home all smiles - even with homework to do sometime over his week off! He is so excited about camp... he just keeps chatting about it all the time. I sure hope it lives up to his expectations. But from others that have gone it sounds like it is a great time!
Jake had a soccer game today. He did his normal daydreaming but would 'wake-up' every once in a while and go after the ball. After soccer Jake, Tyler and I went birthday supply shopping. They picked out their pinata, plates, candy etc. Tomorrow is their combined birthday party. Yeah I got lazy this year! I asked them and they were very excited to do it together. Seems like I just have no time. I guess the good side is that the weekend I was going to have Ty's party before I took the shortcut, Owen and I were in the hospital and got released that day! So I guess all things work out.
I packed Owen for camp - boy all the stuff adds up fast I had to trade the suitcase I had started with for the big one! Then I headed out to Walmart to pick up a couple things I realized he was still lacking, the cakes, and some groceries. I was able to sneak out alone!! That made it much easier!!!
Tyler and Jake are going crazy now though wanting their party!!!
On a more serious note. Our cousin Dejah has been home 2 days after some VERY intense chemo and was admitted again yesterday with a blood infection. He has basically slept and is getting antibiotics 24 hours as his ANC is 0. Please keep him and his family in your thoughts, they are having a rough time now. We have been there and know the power of all the good wishes and prayers!!
Thank you and have a good night!
Thursday, July 12, 2007 7:23 PM CDT
Things continue to go well. Owen and I went to see the new Harry Potter movie last night. We stopped first to get tickets to the 6:50 show and then headed to Walmart for things he needed for camp. Now it is July - do you think you could find water shoes???? They are pretty much picked over, but luckily in a bin stuck in the middle of an aisle on clearance we found his size!
The movie is very good and leaving us in antipication of the next Harry to come!!!
Today Owen met with Darren. They are going to try a new technique. Owen will write a little bit in a journal every day. It can be about anything, what he did, something that made him happy, sad, angry. Doesn't really matter just something. I think this will be good. Owen tends to forget about things that set him off and then has good days and it is hard to go back and remember them.
He started feeling really achey this afternoon and was sobbing in pain. He took a pain med and is feeling good now. I am getting anxious for his next bone marrow test as it seems like he just has more aches and pains than he should! I just need that 'all clear' to set me at ease.
Tomorrow he has tutoring with Miss Tracey, he is looking forward to that - he is really liking this special school time in the summer.
I have some great news! Tyler is working very hard at potty training. He is wearing underwear everyday - even to camp! He has had some accidents but progress is being made! He just started last week asking people when Chris had him somewhere (while Owen and I were in the hospital) to take him to the bathroom and actually going when taken! So we jumped on that and put him in his underwear and have been very supportive and always reminding him. Sometimes he fights us but I think he has finally decided he is ready. I told him he keeps going that we will go to McDonalds this weekend. So he is looking forward to that. Hope I didn't jinx us by telling you all - but he has been in underwear for 5 days now! Yippee!!!!!
Have a good night!
Tuesday, July 10, 2007 7:36 PM CDT
All is going well. It was a long day. I had my periodontist appt at 9 this morning in Syracuse so Owen went with me since his doctor appt is at 11:30 today. After the dentist we went out to breakfast and then headed to the hospital.
He passed counts so he received both chemo's - Vincristine and Cycloposphamide plus hydration of liquids. So it was after 4 when we left. His second culture of blood that was taken before we left the hospital last week was negative so the middle culture must have gotten contaminated somehow and he truly did not have a bacteria growing last week. So we are able to stop the antibiotics but it brings us back to not knowing what caused his fevers. It still could have been viral but he just felt so good the whole time and it seems he should have felt sick.
Next week Owen should get a spinal tap and back on a month of oral chemo... however next week is Camp Good Days so he is getting the week off. Dr. Cherrick said we would wait the week for everything and begin again on the 24th. So he has a whole week of no doctors, no pills, just fun fun fun! I hope he enjoys it! I am a little bit skeptical on whether he will make it without calling to come home. He has never camped and this is in a cabin where they sleep. We were looking at a scrap album at clinic today and it sure looks like lots to do and so much fun! He is really pumped about it. Going through his list to bring looks like we need a little shopping trip!
We spent the night swimming in the pool and staying cool.
Have a good night!
Sunday, July 8, 2007 8:16 PM CDT
All is well. yippee!!!
Last night we headed up to Fair Haven to watch the fireworks for Owen. We met at my cousin Missy's house and hung our for awhile before heading down. The kids had a great time - although Tyler got scared of the loud booms and we watched from the car with the stereo on! Owen was very happy to get to see some fireworks and have his July 4th!!!
Today Grandma Bonnie, Aunt Shelly, Uncle Pete, PJ and Alexis came over for swimming and a BBQ so it was alot of fun for everyone today. The kids spent quite a bit of time in the pool and playing outside. Love to see Owen up and about as that increasing his muscles everyday. He did complain tonight that his ankle is bothering him but he did alot for him with the walking last night and playing today.
Tyler starts Freedom Camp tomorrow and he seems quite excited. He helped me pack his bag. He was in quite the good mood today - I even got him to sit for an hour and write his name, color, practice matching and cutting. I kept waiting for him to be 'all done' but he kept going. I think it was because it was just him and I early this morning.
Owen returns to tutoring tomorrow. So a little more normalcy has surfaced again in our household.
Have a good night everyone!
Saturday, July 7, 2007 10:53 AM CDT
The culture from Owens fever thursday night did grow a bacteria. His first cultures from tuesday still remain negative. So they drew another culture last night to see if the thursday was a false result. I was sort of relieved that the culture showed something as I worry about low grade fevers and no source....
The good news is we ARE going home today. He will get sent home on Vancomycin antibiotic by IV. We will be seen in clinic on tuesday for our regular appointment and the culture should be back by then to know if we should continue the vanco or the culture was wrong.
Owen continues to feel fine through out this. His ANC is now up over the 500 mark and has not had a fever since thursday - so we are clear to go.
Owen seemed to manage to squeeze the stay out until his 'wife' Brooke worked today!! So he got his hugs in. We should be leaving within an hour or so. Waiting for his current antibiotic to finish and to verify Lincare - the home delivery service can deliver today.
So happy dances are here today!
Have a good day....
Friday, July 6, 2007 9:15 PM CDT
So far so good today.....
I went home today around noon to spend some time with Tyler and Jake it has been since tuesday that I have seen them. They were very happy to see me and we played outside a bit before they decided they were hungry. So we came in and had some lunch and through a movie in. Tyler kept asking to go 'bye-bye see owie'. Yeah as much as they all fight they do love one another!
We did end up leaving. I took them to the Cayuga County Fair. We looked at all the animals. They got a real kick out of watching a sheep get sheared. The sheep was blatting the whole time. The alpacas were really cool, but we kept our distance I know how they love to spit!
We grabbed a bit to eat, and headed to the midway. The boys had a ball on the rides. Even Jake - who use to be timid of any rides seemed to love them. So that is good - I was debating on whether to take him to seabreeze this year. After a few rides I let them play a couple of games for those wonderful prizes! LOL.
Then we headed back up to the hospital. The boys raced cars in the hall for awhile and then we settled into the room. Tyler got all comfortable - shirt, shoes, socks everything off and climbed in bed. Owen was begging me to let him stay the night... he would be good... I would love to but it would have broken Jakes heart, and what IF he wasn't good or Owen started to have fevers or whatever. I figured better just send him home. When Chris was ready to go I walked them out and poor Ty kept hugging me and his bottom lip was pouting. Jake kept asking why I couldn't come home with them and he wouldn't see me now for a long time! No Jake we HOPE to be home tomorrow!!!!
So like I said so far so good..... I won't even say the dreaded word.
My cousing Dejah's site has been updated. It sucks so bad that they have had to start their site back up. My heart goes out to them as I know where they are right now. Living in the disbelief that it is happening all over again and how to come to grips and get through it. I am not sure why Owen and Dejah have both been chosen to travel this horrible road twice and we may never know. Please keep them in your thoughts and prayers.
Thursday, July 5, 2007 9:12 PM CDT
Things were going along just fine until just now - he spiked another fever at 10:00pm!
Back to last night... we saw a little bit of the fireworks from the room. Couldn't see the big ones at the state fair grounds due to the buildings in the way, but we saw some from maybe the P&C stadium and a couple other places but they were smaller.
This morning Owen played monopoly with the volunteer worker. And then he did some math work with 'mean' mommy! Now I know why he says I am no fun! As he is trying to fidget around and tell me stories and do everything in his power NOT to do the work! So then I get mad and tell him to pay attention and lets work and then he tells me I am no fun!
Dad, Leanne and Kim came up to visit tonight and we had another Monopoly battle. It was fun, Kim and Grandma Lea were newbies to the game and Owen got frustrated everytime things didn't go his way... but he and I ended up being the final two. We paused the game to walked out everyone out and do sparklers in the parking lot. Upon returning it was vital time and that is where my story began - he had spiked a fever!
Unfotunately this will mean a longer stay, good news is nothing is growing in the cultures so it most likely is still viral but to a child with no immune system - it can still cause havoc very quickly so here we remain.
So settling in for another night....
Wednesday, July 4, 2007 4:44 PM CDT
It was an uneventful night. Owen continued to feel good, so that is good. Today he still had fevers and unforturnately is has totally bottomed out on his counts and therefore we will be staying. Since a child with no immune system and fever can be very dangerous they will not release us until either he is fever free for 48 hours or his ANC level rises. So as of right now we are here until sometime Friday, as long as he runs no more fevers. He has been fever free since this morning but came close this afternoon with 38.1 (100.6) but it went back down. They are still thinking it is something viral, or possible from his gum/ tooth irritaion. He will start peridex swishes to try and keep his mouth cleaner and we are discussing his poor brushing jobs. I looked back through the journal and his last time he was admitted was April 29th and then one ER visit on May 25th so he really has had an awesome streak. We were really enjoying it and hopefully will get back there very quickly.
So the fireworks did go off last night and Chris took Ty and Jake. Jake loved them and Tyler liked the small ones but got quite nervous with the big ones and hid for most of these in the farthest corner of the boat! They hung out and played back at the carter's camp and came home at midnight. So I am glad they were able to enjoy the night. Today Chris will take him to his friend Bill's for a cook out.
Owen recieved a special package from cousin chrissy, including sparklers!!! The nurse has agreed to let Owen go outside later with a mask on to light these but under NO circumstances can he light them in the hospital!!! He is still trying to work that one... ha ha. If the fireworks happen in Syracuse tonight we should be able to see alot of them from our room.
Hoping to get Owen over to FairHaven so he gets to see the fireworks. I think they are friday so it all depends on what happens in the next few hours if friday release is still possible. I think that is the worse thing about being here is that he loves the 4th and all the fireworks and he is missing them. At least he is remaining in good spirits though.
Tutoring is obviously cancelled but I already talked to Miss Tracey and have some work for him to do. He is mad because I am not 'fun' to work with, I am like a teacher! So I asked Miss Tracey on how to be fun!
Jack Kavanaugh a nephew of a good friend of moms is running in the race from Auburn to Atlanta in the first annual 'Brians Invitational' for a fundraising event for Cancer. Their are 5 runners and each will complete about 10 miles per day for a total of 50 miles. At the end of each day they will be stopping at a local church to pray for the people on their prayer list. Jack has Owen included on his list. What an honor - traveling all the way to Atlanta too!!! Thankyou Jack!
Keep us in your thoughts and pray for those fevers to stay away!!! And his counts to return!
Have a good night!
Tuesday, July 3, 2007 7:09 PM CDT
Our good days have been brought to an end. Owen went to clinic today. He was able to get his Vincristine but not his cyclophasmide as his counts were too low. His ANC wasn't back but his WBC was only .8 so good indication he is close to bottom. I told Dr. Cherrick that he ran the low grade yesterday and about the tooth ache. His gums look real red today and are swollen. Anyways any leg pain must be treated with Tramydol NOT vicodin since vicodin has fever reducer. Back home we came.
Owen was getting very achy after being home for a bit. He decided to take his temperature to show me he had no fever and he could get Vicodin..... well that back fired. He had 101.2 fever! I waited a little bit and took it again 101.4 OK - no denying it he has a fever. I call 5C. Yes unfortunately with him being neutropenic (no immune system) and fever we have bought a ticket to the hospital and more than likely an overnight stay.
Owen did not take this well and just sobbed. My heart broke for him, he has been doing so awesome and his spirits have been so up I don't want to go backwards. We headed back up to the hospital. We had to go to the ER first as they had no bed on 7H but wanted us here and checked in. We had just arrived and were being weighed and going through the motions when 7H called they were ready for us! Yeah thank goodness no 6 hours in the ER!!
Owen had to have a periphyrl blood draw to culture as well as from his port. They couldn't get over how great he looked. Except for the darn fever he was a picture of health! His mood did cheer up and he has been in pretty good spirits here. Sorry but we are praying for rain to cancel the fireworks in Auburn!! Otherwise we hope to catch some in Syracuse tomorrow (even if it is from our hospital window!) No clue as too how long we are here for. The antibiotic IV has been started and it will all depend on how his fevers run and what his counts do. Hopefully just a quick overnight, we can always hope!
Hope you all have a very nice 4th!
Monday, July 2, 2007 5:52 PM CDT
Today started out a little rough. Owen woke up in alot of pain and was running a low grade fever (100.2). He took a vicodin before Mom called me - which I might have cautioned no as it does have fever reducer in it and we need to know what his fever is going to do. Mom cancelled Miss Tracey - first day of tutoring! After the vicodin kicked in he felt better and wanted to go to tutoring. So off he went a little late - but he went. They worked on writing and then for fun they played with Miss Tracey's new puppy Talula (sp?) Owen wasn't sure what kind but when it grew up it would be bigger than Jake!
Later this afternoon he started to hurt again but it was a toothache. I bought him some orajel for this. Who knows - that may be the source of his fever this morning, but so far no more fevers. He has a doctor appt tomorrow at 10:15 so we can get his counts checked and a checkup and see if anything is going on. He again receives Vincristine, Cyclophasamide and then fluids following it. Tomorrow is the fireworks at the lake so we are hoping he is up for that.
Tyler is off with Daddy tonight to a friends house to fix his speakers. He was all happy to get to go for a ride and 'help'. Hopefuly he behaves - it is at a camp on the lake, so Daddy won't be shy of taking him places again!
Have a good night!
Sunday, July 1, 2007 6:05 PM CDT
Happy 8th Birthday Tyler!!!! He was so proud of himself today when I picked him up - showing me his new backpack from Grandma Pat and just grinning ear to ear for his birthday. We have not done a party yet.... I have decided this year to combine his and Jakes. Jakes is at the end of the month so between 2 kids parties and 2 family parties, gets crazy - summer is too short. Jake and Tyler were thrilled with the idea so for this year it will work.
We got Tyler one of those home Jumping houses. He was happy as can be as he loves them. But unfortunately he also has found a bad habit with it. He likes to turn off the blower and jump in the house and let it deflate on him! Yeah not a good idea, so he has already gotten in trouble for this and hopefully it will not become a habit. He took a nap today and sounds a little raspy so hoping he isn't coming down with something. With the crazy weather - 90 one day and then 60's today! Man it was cold later yesterday and today!! I want summer - give me 90 every day - summer is too short!
Just me and him went for a walk this afternoon to have a special day. We stopped and sat and watched the goats down the road for awhile. He was quite pleased to have mom all to himself and kept higging me on our walk.
Owen had spent the night at Dan's. He woke up this morning with a headache and took tylenol. He attempted to go fishing but his legs started really bothering him, so he came home. He actually took 2 pain meds today due to leg pain. Hoping this balances out soon the last couple of days seem to be worse and by this time it should be getting better.
Tomorrow he starts his summer tutoring. He will have it 2 days a week for 3 hours or so. He was very excited today when he realized it was the 1st - 'Wow - tutoring starts tomorrow!!!' I think he is looking forward to going with his teachers to the school and getting out.
We recieved some very sad news and I don't know all the details yet - will find out more next week. Dejah - our cousin from Vancouver has relapsed with his Wilms tumor. He has been clear for almost 2 years. We are sending our hugs, kisses and prayers their way. Dejah will step up to the plate again and be the champion he was before. So I will keep you posted but please say some prayers for Dejah and his family. I have put the link to his web site below as they will start updating again...
Saturday, June 30, 2007 5:34 AM CDT
REMINDER: Chicken BBQ today! Saturday June 30th 2pm-? Bring a black balloon to launch for Chris' 40th if you can!
(It is adult only though our kids will go to grandmas late afternoon. Yeah I am feeling guilty about that after my disaster trip!)
Well I made it home from my nightmare trip at 2:30am friday morning. I sat at the airport all day hoping to go standby but it was absolute caous there with so many people stranded. Even my 9:30pm flight was delayed until 11:45pm. So I arrived home at 2:15, only to get up at 7. It was Owen's last day of golf and parents got to attend and watch them play 2 holes of golf. So off we went. They allowed me to drive Owen in a golf cart as thursday when they walked the course he got real sore and didn't feel good. So we had fun and Owen really seems to like it. I think I will get him a private lesson at Arnold Palmers with Spinney, he is great with the kids.
I puttered and got things ready for the party, went swimming with the boys and enjoyed the day. It felt so good to be home! Owen had a roller skating birthday party to go to at 6pm. I dropped him off and went to the store. I returned at 7. His legs were bothering him again. So we took the skates off and massaged and put ice on them. He perked up for a bit and did the hokey pokey and chicken dance when they allowd non-skaters on the floor. After that he was ready to go home.
This morning Jake has a soccer game at 10. Hopefully he will be up to it more today than last week, although both him and Tyler are already awake at 6:30am!!! Yikes!!!
Have a good day and we hope to see you!
Thursday, June 28, 2007 9:17 AM CDT
All is well with Owen at least!! He went to golf lessons today and has therapy at noon.
I on the other hand am living in hell! My nice and easy 1 day trip has gone bad. I arrived at the airport yesterday for my 4pm flight. It was delayed due to the place coming from NYC being late. I would not beable to make my connecting flight in cinncinati. So they rerouted me through charlotte to rochester. My car is in syracuse but since there were no flight to syracuse availble until the next day I took the rochester one and would deal with the car issue later. I get to the security gate and the cards i was given were just itinary cards not boarding passes so I could go through. It is 4pm now and this flight is 4:30, I was already running to make it. So back to the desk. The freaking clerk never even put me on the flight!!! So they put me on it still even though it was now 4:10, since I had no bags to check. Back running through the airport to security. Now since I am only a few minutes before take off I have to go through the heavy security check. I finally make it to the gate and the plane was going to be taking off 10 minutes late - so I made it!
Arrive in charlotte - check the board - rochester is delayed one hour. OK, I continue down to the gate. I arrive and all is in a turmoil... I look at the board, mind you this is 150 yards further down when I first check 2 minutes ago... flight to rochester cancelled! So now I go stand in line for 2.5 hours to get a new flight. There are many people flying east that are all in the same boat. They cancelled everything due to the storms, which according to home - we were no longer having any! First available to syracuse is 4pm on thursday. So I ask her to check rochester, nope 8pm arrival for those. So ok book the 4pm. Arghhhh it is gone now - there had only been 1 seat left and I pushed fate. Now I am on a 9:30pm direct flight to syracuse tonight.
I get a hotel through the airport hospitality line for stranded passengers. They give me the Ameri-suites. I call for a shuttle (9:40pm now) and go sit and wait, and wait and wait. I call the hotel 3 times and another guy calls once. We waited an hour for the shuttle! According to the driver of the van, he took his previous passenger to the store as her bags were all on the plane and she had an infant and needed formula and bottles. So anyway we finally arrive at the hotel (11pm). I have no room! The confirmation number is no good and he has no rooms left to give me. I call back the hospitality line and they assure me I have a room and to 'tell' the hotel to give me one. yeah sounds good. I hand the phone to the desk clerk. They exchange some pretty good words but bottom line is I have no room. So now I am stranded at the hotel. The hospitality line wants me to go back to the airport while they locate me a room, as no more available at any hotel are showing for them right now. NO WAY!!!! The desk clerk, bless his heart, gets me a room at a hotel down the road and lets his van driver bring me.
I slept until 8 this morning - i think due to exhaustion from stress!!!! I am on my way back to the airport now and will hope for a standby or earlier flight to open, but checking the internet it looks pretty doubtful. I have to be careful as many flight I see are leaving at 2 arriving at 9 and have a layover somewhere - yeah so more chances for delays. I may be best to wait for my direct flight, as long as nothing happens to that since at 9:30 tongight - any issues would most likely mean another night in charlotte!
I am so turned off for traveling, seems like trouble getting places is the standard now and if you ever make it on time you have someone watching over you.
Well I hope you all have a great day !!!!
Wednesday, June 27, 2007 5:53 AM CDT
All continues to go well.
Owen went to golf lessons monday morning and he really likes it. Monday they worked on stances and hitting the ball, and according to Owen he did it perfect - a pro already! He went to Thomas house afterwards and was going to spend the night. At 10:00 I got a call though that his stomach was upset and his legs ached so he wanted to come home. I should have sent a pain medicine with him but I try not to encourage them unless he really needs them. So no biggie off to get him and bring him home.
Tuesday's doctor appt. went well. He got pentanamine - the antipneumonia medicine he gets once a month, then Vincristine. We had to wait a bit for his blood results to come back as his slide looked a bit low for white blood cells and ANC. He has to have an ANC of 750 to get the cyclophosamide. It came back and he was over 900 so good enough to get it. Leave it to Owen to even let the low dose chemo's to drop his counts!
We were on the road a little after 1. I dropped Owen to Mom's and did a big U turn back to the airport. I arrived a little after 3, got checked in through security and was ready plenty of time. It was 3:30 my flight was 5pm. Then I realized I left my cell phone in the car on the charger arghhhhhh!!! So I had to hall my suitcase and computer back out and I was in the far open lot since the garage was full - got my cell and had to re-go through security. I got back to the gate to hear the flight was delayed an hour! No biggie I had a 2 hour lay over in Cincinnati so I still had plenty of time.
I arrived in biringham 9:30 (10:30 our time) and headed to bed. I always sleep bad the first night at a hotel and since I am headed home at 4 it doesn't really matter.
Jake stayed with Papa Fred and Grandma Lea. He had a blast with Kim and Nicole. Nic and him were running throught the sprinkler. Nic fully clothed and Jake in his boxer Spidermans. Yes he has discovered boxers and thinks he is so cute in them & yes he is!
Owen and Tyler stayed with Grandma Pat. Owen went to the McLoughlins swimming and a little bit later Tyler and Grandma went over to watch. So everyone was having fun!
I will be headed back today at 4 and get in at 9:30. I have Thursday and Friday off so I am very happy - it has been 10 days in a row with having worked the weekend and I am ready for the extra long weekend and to have some time with the boys!!!
Have a good day!
Sunday, June 24, 2007 8:25 PM CDT
Everything is great! Owen had a good weekend. He spent Friday night at Dan's house. I brought him up with Ty and Jake so we hung out for awhile and played ABC Bingo Night - too funny! Now we have a new thing for friday night! Although it is amazing how fast 2 kids can trash a room! They were in Dan's room playing and I went to check on him and they were in heaven - had taken every toy Dan owns out!!!
I had to work the whole weekend - yes I was bumming!!! But it was things that have to be done when minimum users are on. I did leave Saturday morning to go over to Jakes soccer game. This week was not so well. He basically stood and watched the ball. IF it happened to come right to him he kicked it. Oh well, next week is another try.
I didn't get home from work until 7:30 so didn't leave much time to do more than eat dinner and go to bed!
Today I was back to work early. Owen went Strawberry picking with Papa, but didn't last too long.. it was too hot! So I guess they should have went in the cold weather yesterday! We had forgotten he was suppose to go so he was still at Dan's. Today was much better - I got home at 5:30, so I asked the boys what they wanted to do - I was so guilt ridden over missing the whole weekend with them. So off to Cayuga Elementary School to play on the playground. We had a lot of fun and acted out many Batman episodes (surprise), and then a Sly Cooper one. Finally they were getting tired so we headed to Pete's Treats for dinner and ice cream for dessert. I think I am back in their good graces again and they have forgiven me. Especially since tuesday I am headed to Birmingham - but just for one night I will be back on Wednesday night.
Then I have Thursday and Friday off. Our Chicken BBQ is next Saturday so I'll have plenty to do in between playing with the boys. So stop on over next week! I am having everyone bring a black balloon to roast Chris for his 40th, since he didn't want a party. I'll get him one way or another!
Tomorrow Owen starts golf lessons. It is just for the week and he will miss tuesday due to his chemo treatments. He is very excited to have an activity he can do!
Have a good night!!!
Friday, June 22, 2007 6:50 PM CDT
Good days are still our way!
Yesterday was the last day of school for Tyler and Owen - both were 1/2 days. Owen stopped down with Pam and Sam to Cayuga Elementary school to say good bye to our beloved Mrs. Vasquez - she is retiring! I will REALLY miss her as Jake is coming into Multi-age next year and her shoes will be hard to fill! Congratulations Mrs. V - enjoy it!!!!!
Owen had therapy with Darren yesterday. He did discuss one of his 'anger' triggers - Jake. He agreed to talk about one issue each week and then it was play time! He didn't want me to come in - he wants to do this on his own and just with Darren so I think we are making a step in the right direction. I have made a list of things and he agrees they are all things that he gets very updet about and hopefully Darren can help him work through some or give him a new way to look at them. He says they did have a 'plan' for helping with Jake anger triggers but doesn't want to tell me - he just wants to see if it works when he tries it.
Today was the first day to sleep in and hmmm guess who was up at 7:15?? Tyler!!! I drag him out of bed every morning and today he was up! Owen went to Samanthas 10th birthday today and had a great time. Of course there was only him and Mitchell the token boys so they had the girls to themselves!
Papa Fred took the boys to McDonalds today for a little play time - so they were very happy since McD's in very limited in our house while we continue to 'try' and get Tyler interested in an incentive plan for the potty!
Jake has a soccer game tomorrow at 10am so hopefully he will keep his streak going for running and playing! I have to work tomorrow - yuck - but the weekend is the time to work on the network when there are fewer people. So I will leave to come to the game and then return until we are done - hopefully in the afternoon - my weekends are precious to me.
So things are quiet and going very well. Owen is having leg pain from the Vincristine and takes a pain med in the morning and usually at night but otherwise is tolerating it so that is better than before. I think he felt so awful before so the pain just seemed so much worse.
Have a good night!!!
Wednesday, June 20, 2007 8:35 PM CDT
Check out the back page of the citizen sports page tonight!! (see picture above!) How great - he was top individual (about 3000) & Nucor was top team (6704.00)!!!
Owen got chemo yesterday and it went pretty well. He got nauseous on the way home and then had diahrea. But felt fine after. This is lower dose chemo so it should not hit him too hard, but one of them is Vincristine so the leg pain may be starting up soon. He goes back next tuesday for the same ones.
Last night the ball game was a bust. We got there and an hour later it poured and I mean poured! We stood under the 'metal' bleachers with lightning all around and after 5 minutes Owen said he was ready to go! I had tried to run right out at first but they wanted to wait it out.... yeah well it wasn't going to be over quick. So then we started to the car... along ways away and Owen is hobble walking again. So like the good mother I am.. why don't you boys wait under the TREE and I will go get the car. Opps... I ran to the car but then traffic is bad getting out of there so the boys were absolutely soaked when I pulled up to pick them up. Needless to say Dan and Owen were not happy with me! Back to Papa's and grandmas to get Ty and Jake and they were able to dry off with towels.
Tonight was Jake pre-school graduation. My baby has grown up, I have no more little ones! He was so cute and grinning ear to ear. Waving to someone every chance he got. They sang songs and even did a couple of dances. Just too cute.
We headed to Applebee's for a celebration dinner. Not good - Jake was so tired and antsy that it made for a long dinner.
Tomorrow is Ty and Owen's last day of school (1/2 day) and summer will officially begin! Sure wish I were off!
Monday, June 18, 2007 7:07 PM CDT
Good days... good days!
Happy Be-lated Fathers Day. To my husband, my Dad, and my father-in-law! Thankyou to my husband for giving me the beautiful children that I have and 'teaching' them all those things that you don't learn anywhere else! LOL
Thankyou to my Dad who is the apple of my kids eyes and a great support for our family!
Yesterday we had a cookout with my Dad, Leanne, brother Steve and all of us. It was a day of relaxing by the pool and having fun.
Today Owen had field days at school so he had an awesome time. Tomorrow is his last 'real' day of school - but he will be getting out early to go to his 12:30 doctor appt. He is getting Cyclophosphamide and Vincristine by IV plus hydration of fluids.
Tomorrow is the AJ Smith night at the Double Days game so I will be taking Owen to that.
Have a good night!
Saturday, June 16, 2007 8:07 PM CDT
Great days continue!
Yesterday I took the afternoon off to spend with Tyler at his field day celebration at Port Byron. I arrived as they were headed to the auditorium for the music show. So I missed all the outdoor stuff and you know I love to be outside!! Thats okay - it was a really good music show and we were up and dancing and doing all the moves! Tyler loved it! Mr. Parker (the principal) is retiring this year along with a few other teachers. Wow memory lane - Mr. Parker was my 8th grade science teacher, and Mrs. Brehaut was my 4th grade teacher - I even went to her wedding! I won't say how many years ago for their sake as well as mine!!! Ha Ha
Chris, me and Bonnie (chris' mom) went out to dinner for his 40th. Bonnie took us to Rosalia'!!! It was delicious - thankyou so much - and such a nice night out. We had alot of laughs and it was very relaxing.
Owen went bullhead fishing with Uncle Steve and had alot of fun but a few bug bites! Forgot the spray! They weren't as lucky this time and only caught 4 fish but Owen just loves hanging with Uncle Steve!
This morning Jake had a soccer game. First one I have been able to make! I thought he did great! He did zone out once in a while and a crowd of kids would just zoom by him - but he was running this week and smiling up a storm when he got a kick in! At one point he ended up in the wide open with the ball and was starting down the field when the whistle blew - a kid was down. Ahhh his shining moment! Even coach gave him a high five - seeing a whole new Jake this week.
Home to clean and then out in the beautiful sun!!!! Owen had his friend Sean over and they swam for quite awhile then retreated to play their videos. Tyler, Jake and I took over the pool then and enjoyed the afternoon. Jake has become quite the swimmer - it will be so nice this summer - he wouldn't go near the water last year without clinging to you. Tyler improves every year and is jumping off the sides every chance he gets. He loves swimming under water too - except he is smiling the whole time - not sure how he isn't drinking half the pool!
Late afternoon Owen and I headed to Syracuse. Owen won an audition to become a kids-caster thru radio-disney at an upcoming Sky chiefs game. The auditions were taking place prior to the game tonight and each kid who auditioned got a free ticket to the game. They gave the kids a script to read from. I thought Owen did great and put alot of emotion into it. There was ALOT of kids! The 4 winners weren't being annouced until 7pm. Radio Disney had music blaring and then they played a couple of games. First the kids - they passed around a multi-layer gift around a circle and when ever the music stopped the kid holding it got to tear off a layer. Owen did get it once - but it was the second to last layer. The next kid tore off the last layer and won the DVD. Now the parents. About 30 of us formed a circle and had to hold hands. They placed 2 hula hoops one at each end of the group into the chain. We had to move the hula hoops around by stepping through them and up and over to the next person without letting go of the persons hands. When the music stopped the person with the hula hoop on them was out. I got the hang of it after a few tries and was getting in and through quickly. Soon it was a small group and only one hula hoop. Finally down to 3! Next music stops and it wasn't on me!!! Me and the other Mom won!! We each got 4 passes to Darien Lake!!! WOW - Owen was thrilled and came running and gave me the biggest hug!!! Didn't think his Mom had what it took eh?!
The annoucement came and Owen was not one of the chosen. His face just dropped... he takes things so personally. He decided he didn't want to stay for the game he just wanted to go home. I got him back all smiles on the walk to the car planning out Darien Lake trip! he talked to his friend Dan, and he wanted him to come to the camp that night and spend the night. So that boosted him even more. We arrived home to pack and him and Chris headed up to the lake to hang out.
So good - good - good - days are happening and we couldn't be happier here!
Thursday, June 14, 2007 9:00 PM CDT
Good days continue! Today Owen had his dance at school to celebrate for the reading program they did so great on. Each child that read over 400 minutes was able to participate. I took the afternoon off to help. Wow do they work up a thirst!! We couldn't keep the drinks pouring fast enough! Owen had fun and I got to catch a few glimpses of the fun! It just makes me smile to see Owen enjoying himself so much. He looks like a regular 4th grader again and is feeling like one! At the end Owen came in his legs were achy and he was just ready to go home.
We stopped at Home Depot to pick up a birthday present / fathers day gift for Daddy. He turns the big 40 tomorrow (the 15th). We ran into Kohl's after as Owen is in desperate need of shorts. Not sure what he does with his - they go missing - he is down to 3 pair. How in the world do you lose shorts! Socks I understand the washing machine 'eats' but shorts? Oh well..
Off to therapy - another fun day for Owen. Next week I am going to go into the session as well and bring up some topics I know bother Owen to try and get him to open up. He is going and just having fun - which is great but I want him to get out the things that bother him as well. He says he feels great now and nothing is bothering him... but I think he forgets. Just 2 days ago he got himself worked up on 'what if the cancer comes back?' He says he is finally feeling good and he knows its just waiting to attack him again! Today he started to cry on the way to Home Depot because he realized with me talking to Miss Heath that he starts weekly clinic visits again next week for 4 weeks. He doesn't want to go back - he just wants to stay home and take the pills. So he can turn so easily - so I know he is not through his mental anguish yet, just the good times are masking alot of it.
The boys and I headed to Spiderman tonight. We keep meaning to get to the theatre to see it since we saw it at the drive ins and it is probably getting ready to be pulled so we headed in tonight. At first I thought we had the place to ourselves but 2 other couples came in last minute. They probably wish they choose a different movie! Jake asked questions NON-STOP!!! Tyler had to keep changing seats first by me then across the aisle next to Owen. Owen knew Jake would ask alot of questions so he sat separately. They when the music was jamming a couple times Tyler stood in the aisle and danced up a storm! Jake told us on the way home that he ask questions because he is 4 - when he is 5 he will not! Ok sounds reasonable to me!
Tomorrow is Tylers field days at school, so I am taking another afternoon off to spend it with him at his party. Hopefully he will enjoy the day with me and not just concentrate on leaving as soon as I get there.
Have a great night!
Tuesday, June 12, 2007 8:30 PM CDT
Another good day. Owen went to Walawenders after school for some swimming. Then home for dinner. He even talked about his day! This is big - usually it is pulling teeth to get him to say anything he did. One thing he learned today - which I found very interesting too - the 5 second rule for food is real!!! Some college kids did a study and a peeled apple lasted 56 seconds on the cafeteria floor before picking up bacteria, a skittle was 1.5 minutes! Just a little tidbit of knowledge.
Tyler had a good day! He was so proud when I came home - holding his hand to his head and saying 'I call, I call!' Good job Ty!
Tonight Tyler and Jake were quite busy. They pulled a bunch of boards out of our hedge row and 'built' a little play area. Dragged their tool bench, some chairs, play food and dishes over and had a party. I was just watching them from the deck and they were so into this project. Working together carrying the boards and placing them just so, it was great to see. Tyler showed me how 2 boards crossed to form a 'T' - all proud he pointed to himself and said 'T - me - Tyler' Thats right! Tyler wasn't ready to come in when I went out to get them. Jake sat down next to him and said 'Its ok Ty, we can play more party tomorrow. We are going to go in and have ice cream' Looks at me 'Right Mom?' Is he working me or what! Yes you can have ice cream. So that was all it took and both came in willingly! It is so hard with it so light out at 8 to convince them it is time to get ready for bed!
Chemo pills started back up tonight at a reduced dosage. So 6.5 pills of Methotrexate and 1 of 6MP. Owen complained earlier he didn't feel good - but that was around homework time... he seems fine now. I keep telling him how great he looks - and he does! Keep these good days rolling we are LOVING it!!!!
Have a good night!
Monday, June 11, 2007 7:58 PM CDT
Good days continue. Owen had a full day of fishing with Uncle Steve. They didn't return until 2:00 and Owen said they caught about 20 fish! He was then off to Dan's to fish off the dock, went for a boat ride and then just hung out.
I played 'assistant' to Chris who was putting in a new slider on our deck. The old one was just rotting away. Lets just say I am NOT looking forward to that any time soon again!!! But hey we made it through with no divorce! LOL
I got time-outs when I wasn't needed and just played with Tyler and Jake. So it was a good day all around.
Owen's counts are good and he will resume his chemo pills at 3/4 dosage. His ANC is 1973 and they like to keep it between 500 -1500. So we will try this reduced dosage and hope it doesn't crash him again. He only has one more week of the pills and then it is back to clinic for 4 weeks for chemo by IV. He does not get held back in this phase so he keeps just pushing along even if he gets held on his meds.
All looks good with his schedule and he should be able to attend Camp Good Days for Cancer kids in July! Last year he missed it due to being hospitalized so he is really hoping to make it this year.
Have a good night!
Sunday, June 10, 2007 5:37 AM CDT
Good days continue. Owen had a little 'glitch' friday. He came home from school - said he was way too hot and felt nauseous. I am betting it was due to arriving home late from my 'Moms nite out'. So that is my fault. Jake came home from school as well. He pinched his thumb which caused a cut and he was just not himself. Tyler on the other hand had a great day!!! Owen had therapy on Friday and things seem to be going well. Darren sees things coming out a little through their play and Owen's comfort level is increasing. When Darren came to get me he had on a viking hat and Owen had an army hat on - so I think this is going to work great! Owen loves him!
Saturday Jake had a soccer game. This is the kid of speed - and then you put him on the soccer field and he just stands there - too busy watching the side lines and waving. Might be he is just young and not quite 'getting it yet'. Took the dogs to the vet and everything is good there - except Nikki needs to lose a minimum of 4 pounds over the next 6 weeks, dropping 15-20 altogether is the goal! Yeah shes a little over weight!
Samantha came over to hit golf balls and then they returned to Walawenders to go swimming. Daddy took Tyler and Jake out romping on the 4-wheeler and I got to clean. Where is the trade off here? Everyone else has fun! LOL
With a 'little' persuassion from Jordan (8 yr old cousin), the boys and I went to Seans birthday party at SK post. Owen was wondering HOW they would get into a bar??? I said it is a polish bar so you are allowed. 'REally??' The boys had a blast dancing up a storm and running around inside and in the outside patio. We then brought Jordan back to our house where they went swimming. Dan came over too and the boys settle in for some video games.
Owen was alittle sore at bed time but again I believe it is due to his body wondering what the heck is going on with all his activity and moving about lately! So it is all good.
Received a letter yesterday with a picture of Owen and Gary Finch (assemblyman) and what an inspiration Owen is to those fighting Cancer. What an honor!
He is off with Uncle Steve this morning to go fishing.
Wow how wonderful is this to talk of all good things and Owen being a kid! It just brightens my day to see him feeling so good. It makes the world go round - so much easier! I have to do blood again in the morning and hope that his counts have recovered so that he can resume his oral chemo pills.
Have a good day!
Friday, June 8, 2007 5:23 AM CDT
Good days continue! Owen had another good day at school and to have him home in a great mood and smiling is just awesome.
I did make the 'Moms nite out' group. It is a group of Mom's from the hospital that get together one night a month. We were meeting at the Retreat in Liverpool, so I brought the boys to their cousins house Ben and Brett and they had a great time playing and swimming! Thankyou for helping me out - the kids had an awesome time and so did I!
The Retreat is a really neat restaurant! We waited for an outside patio table. There was 6 of us and 2 more joined later. What a great group! It was nice to be with a group of mom's with many various illnesses with their children. One family had also been to Rochester for a bone marrow transplant in the summer of 2002 so before Owen. We went through the nurses and who we remembered and of course Dr. John (Horan). They had him as well and loved him too!!! Another Mom just got back from Disney - their Make-a-Wish trip with lots of pictures, so that brought all the memories back of Give Kids the World where we stayed. What a difference though, she has a little girl, so it was all princess pictures and getting her hair and makeup done. Where we were the superhero route. But they are a great group and we had many many laughs. They were so easy to fit in with. I look forward to many more nights with this group.
Owen has his therapy today. We switched it to today this week. It is at 4 which works out well. He can just come home normal from school. So for now we will leave it at 4 while school is in session. Only 2 more weeks!
Tyler had another rough day and unfortunately he got 'rewarded' by having a fun night. I talked and talked and talked to him about his behavior so hopefully today will have some improvements or tonight restrictions resume!
Have a good day!
Wednesday, June 6, 2007 7:55 PM CDT
Wow can I still say this... all is well!!! Owen had another good day. He said the kids at school today were 'CRAZY' and not listening, just him and a few others behaved. Have to be proud of that... or could he just not have been back long enough to even think about misbehaving... naaa .. he was good!
Tyler on the other hand had a bad day. The last couple have been bad so I guess it is time for restrictions again to get him back on track.
I had 'sanity' night tonight for golf and had a good time... little cold.. thank you Lori (at work) to give me your jacket for the night... yeah I wasn't prepared for how cold it got.
Tomorrow I am hoping to attend a 'Moms night out' - a few Cancer moms get together the first thursday of the month. So I am hoping to go, waiting to hear from Chris on what time he will be home tomorrow.
Other than than it is QUIET - SHHHHH lets not spoil this trend.
Have a good night!
Tuesday, June 5, 2007 7:13 PM CDT
Owen continues to feel well. His counts however are not.
WBC 1.4 (low)
Hemoglobin 11.3 (ggod)
Platelets 161 (good)
ANC 448 (immune system low <500 neutropenic)
So we have to be on the watch for the dreaded fever. He is feeling great though. With the doctors blessing we are still sending him to school. He is feeling good and being summer there are fewer illnesses in school for him to contact and he is close to the 500 mark. His teacher is on the look out for any outbreaks in school and will let us know so we can pull him if necessary.
It is a hard decision - but he is just SO HAPPY lately and we hate to deflate his good mood since he is finally feeling more like a normal kid! So we will just play it by ear for now. Miss Heath says he has just been doing great in school, few trips to the nurse (he went today for a benedryl due to being itchy).
So all chemo is held for now. He had started back on a reduced 6MP dosage late last week but had skipped the methotrexate. So now both are held until we retest counts next week. I am not sure how this affects his schedule. If he is delayed and makes up the missed oral pills or just keeps moving forward in maintenance but I will find out soon enough.
Owen had a HUGE accomplishment for himself tonight. He beat the spiderman 3 game - AND - used no cheat codes! So he is on cloud nine for that. Well was till the game was turned off due to 'video game times up!'
Tyler stayed home again as his eyes were still quite red last night going to bed and when he got up. But they are looking good now and he will return tomorrow. He took a shower tonight - he is growing up!!! He likes these alot better than tubs lately, except hair washing time. He was so cute. I was putting laundry away in our room (he was in our shower) and he was in there singing away!! I peaked in and he was just twirling in the water and singing for all he was worth!
Have a good night!
Monday, June 4, 2007 6:20 PM CDT
All is well. Sunday was a day of rest for all of us. We puttered and played but nothing big. Owen and I made a trip to walmart later in the day for groceries and so he could spend some of that birthday money burning a whole in his pocket. He was good though - bought one game. He thought of a couple of other things but decided he would wait because he wasn't sure if he 'really' wanted them. Good job! Funny how he is more careful with his money, had it been mine the tears would have been flowing with how much he wanted it!! LOL
Back to school today. Tyler came home almost immediately. His eyes are all red and flowing with junk again. Pink eye again! It is my fault last time I didn't go the full 10 days so this is probably just it flaring back up. This time will be a full 10 days!!! Owen called to come home around 2, his legs were really bothering him. They were yesterday too and I am sure it is because he had more exercise at Relay for Life than he had had in MONTHS! After a pain medicine he was feeling good again.
Tyler and I were dancing up a storm tonight to the wiggles. Meanwhile Owen was the evil scientist and kept injecting Jake and I with a potion that would paralize us until he gave us the antidote. Needless to say Tyler was not happy when I had to keep stopping. 'No Owie No!!!'
I think we are all still feeling the all night of RFL - I am ready for bed already at 7:30!!!
Have a good night!
Saturday, June 2, 2007 7:09 PM CDT
Enjoy the Slide show of Relay for Life
What an Awesome night at Relay for LIfe... where do I start??? I guess first off the Nucor team raised close to $6,500.00!!! Wow is that incredible or what. Owen raised half of this... thankyou everyone for your outstanding support! I want to thank all the people who stopped by and walked - even in the middle of the night! Without you walkers the Relay is not a success! There were about 30 people who pulled together to walk 16 hours in the life of Cancer! Hats off to you all!
The night started with Owen on stage and introduced as one of the survivors. What an honor! Off to march the survivor lap - I am so proud of him... just recently he was bearly off the couch and here he is walking the large walking track! Next Mom, Jake, Tyler and I walked the caregivers lap. Let the walk begin!
It was a night of fun for the kids. The enjoyed the many activities, the dunking booth was a favorite. They even 'faked' Tyler hitting the button he was just so close... the look of triumph on his face when it went in (pulled from behind) and in when Bridgettes adorable little dry boy! Tylers hands went up in the air and mouth wide open! 'I did it!'
Owen and Pam (cousin) did their best at the scavenger hunt and with a little 'help' from Edie they did very well. I won't give away your secret ha ha!
The luminara ceremony was very nice. All the stadium lights went out and the work HOPE was spelled out, plus the hundreds of bags lining the field. We found 8 bags in Honor of Owen! It is just spectacular to see the bags and is a time to reflect on loved ones lost and loved ones still fighting their battle. During our walk Owen noticed Andrew Sleeths bag and stopped in his tracks - In Memory of - 'Mom?! Andrew died?' My heart sank. He was there when Kara and I talked baout it but I guess he wasn't listening, he read all the bags prior to bringing them but must now of noticed the 'in memory of' part. Oh honey - I am sorry - yes Andrew did earlier this year. He was upset that I had not told him... but that is such a fine line of do you or don't you? He does not need any more stress or worry in his life. He did okay with it but just wished he hadn't had to find out this way.
After the ceremony back to the camp and Chris started the bonfire and smore's were in the air!! This year there was a generator so we had lights. I turned the spotlight out on the field by the tents to allow the kids to play bocce ball at night. (Thanks Dave!) Owen had a friend Mitchel and Samantha brought her friend Sara. Tyler and Jake were still hanging and having a blast. They were entertained alot by Maria and my cousin Pam and friend Angie!! Thanks for helping out, the boys love 'new blood' to play with.
At 11:30 there were more activities to join in on. Tyler and I tried to attempt the 3-legged walk but after a few practice steps he was not digging it. So Jake and I made fools of ourselves and of course were out in the first race. All the kids then ran and played with Anna and Josh in the middle of the field... where does this energy come from!
We stopped by the 'Disco' tent and the kids did their share of boogying down.
It was approaching 1am and we were ready to 'try' and get them settled down. Chris took Tyler and Jake home and we headed to the camper. I think they were about to settle down when the subject of bathroom came up so off they all went with Pam for the last break. They came back on a second wind.... We told them they still had to lay down and just rest a bit. Well I dozed off, and I think Pam got a few zzz's but at 2:45 they woke us up to go to the 3-4am activities.
So out we went and first up was the cheese toss contest. Owen and Sara got their faces COVERED in whip cream and then Samantha and Mitchel had to see how many cheese curls they could get stuck in the cream!!! Needless to say the whip cream was just slidding of their faces and melting away and it was a mess but oh how we laughed!!!
Off to the pie eating contest. All of them joined in on the eating a slice a pie with no hands. Mitchel gave it a good run for the money and but was beat out by a crust in the end! Owen then needed a hotdog to compliment the apple pie so over to the concession stand. After this they were ready to crash. It was now after 4!!! I think they finally fell asleep close to 5am. I was up at 7am and went for a much needed coffee and walked a few laps with Nancy and Ron. Then off to start taking down the Nucor Site. Dennis arrived and did most of the work (Thanks Dennis!!!) as I chatted with Mr. Dickson who stopped by to see how we made out.
So all was picked up and we went to have breakfast at the concession stand, Pam joined us and we decided it was time to wake up the night owls for the closing ceremony. They grumbled as they got out of bed and slooooowly walked the final lap. Ah yes... you PLAY you PAY!!!
As we were finishing the lap one of us happened to say Owens name. Some people under the survivor tent whirled around and said - did you say Owen? Owen spoke up to say his name - they asked him his last name - and WOW - he won the Electric Guitar prize and speaker subwoofer system!!! He was on cloud nine!!! He had really really wanted it (not sure why he doesn't play, just another way to drive mom insane I think). He was just beaming.
He had and awesome night and did really well for as much as he has been through. He knew his limitations. He would just sit and watch when everyone was running or doing something too physical for him but the smile on his face said he didn't mind at all.. he was having FUN!
Daddy arrived after Jakes soccer game. Jake was one tired boy at his game and practically asleep on his feet. I didn't expect Chris to stay so late or I would have told him he was not going to be there but without letting them know I didn't want to short the team. Chris took down the camper we slept in and we all headed home. I unpacked and Chris mowed the lawn.
AFter this we headed to Port Byron for the Kelly Green Lipiska Memorial Scholarship benefit. Kelly lost her battle to leukemia last year. We wanted to make an appearance and wished we could have stayed as there were so many friends we haven't seen and so much to catch up on. Owen started to drag and it was just time to call it quits. So we headed out after an hour.
Back home it was just relaxing and a little bit of swimming. Daddy and the boys played for quite awhile. Dan and Ken stopped by stopped by so Owen swam a little with Dan and then they played DS. We were all in bed around 9 - I was surprised I thought we would be done by 7:30!!!
Thankyou again EVERYONE for making the Relay for Life a huge success this year!!!
Thursday, May 31, 2007 8:26 PM CDT
Another good day! Owen was up and out the house and again no visits to the nurse! Tomorrow is their field trip to the Erie Canal so he is very excited.
I had to take Jake for Soccer pictures tonight and then it was home to pack, and pack, and pack for tomorrows Relay for Life! Boy camping is alot of work!!
I will head down at 3 to get the team area set up and then Mom will bring the boys to me later when she comes down for a bit. When Chris gets home him and Pam will go get the camper and bring that down. Do I dare say the weather looks good with just a chance of a thunderstorm???
Owen did awesome thanks to all of you!!! I added another 56.55 in can money today! Brings his total to 2528.80 Nucor General donations at 270.00 Nucor is adding another 2400.00 for a matching fund. It was 2400 when I gave it to them a few days ago - so the donations keep on coming! So that is $5,198.80!!! That is just incredible. Hopefully some day research will find away to get rid of Cancer and not have all these kids (or anyone!) go through the years of treatment.
Owen is very excited about tomorrow and so am I! Should be alot of fun! Feel free to stop by and say hello! We will be there ALL NIGHT! Owen says he has NO intention of sleeping at all - he is doing the WHOLE thing this year! We'll see...
So I will not be updating tomorrow but will let you know Saturday how we made out!
Wednesday, May 30, 2007 8:45 PM CDT
There was a young boy in our house today that sooooo resembled the Owen we all use to know!!!! He was in a SUPER MOOD! He went to school - no complaining about getting up - stayed at school ALL day - did NOT go to the nurse at all - came home smiling!!! It was just so great to hear and see. He went to Walawenders to swim later tonight and even jumped on the trampoline and had plenty of energy. Pam even called to say she didn't know who was at her house... it has been sooo long since we have seen this Owen. Oh how I hope he is here to stay. It is just wonderful and uplifting to see this!
I don't really have much else except YIPPEE!!!!!!
Tuesday, May 29, 2007 7:58 PM CDT
WOW you all are awesome. Owen has $2,375.00 for Relay for Life. The team has 270.00 in misc. donations Nucor will donate another 2400 making a total Nucor Team of $5045.00 as of today!!!! That is just amazing - Thankyou all so much!!!
I did Owen's blood work this morning and his counts have dropped. He has WBC of .8 platelets 110 and RBC of 6.7 so blood transfusion time! His ANC 612 so steadily dropping but he does have neutrophils so should start coming up again. Under 500 is a low immune system. We headed to clinic and first got his Pentanamine done while waiting for the blood. Dr. Cherrick came in and since his counts have dropped it is time to hold the chemo pills and possibly adjust his dosage. We will hold the Methotrexate pill which is 1xWeek (8.5 pills) for 1 week. His 6MP (nightly) will be held until I recheck counts on thursday.
This happens with some kids hence the weekly blood check. And if it CAN happen then it seems like it WILL happen to Owen! Otherwise Owen is looking good and his cough is minimal. He needs to continue to use the puffer until he is no longer coughing at all and then only as needed. But even though his counts have dropped he is over the magic 500 mark and since it is warm and most illnesses have disappeared he is OK to go back to school! I am scared to even say it, everytime I open my mouth and say he is OK something occurs. But we'll keep on trying.....
Have a good night!
Monday, May 28, 2007 4:13 PM CDT
Happy Memorial Day! Thankyou to all the men and woman who have given their lives to fight for our freedom. To all the men and woman who continue to join the service, especially those today in Iraq - WE WANT YOU TO COME HOME!!!!
Owen seems to keep improving everyday. He woke up yesterday and coughed but not for as long and it was even more minimal Sunday night. He was tired in the morning and attempted to hit some more golf balls but just didn't have the energy. He started to cry over that. He was trying to do things and have fun and he just couldn't he was too tired. I told him he had a pretty big day for him on Saturday playing outside so to feel tired on Sunday would be natural. He seemed ok with this. We did work on some math... I told him.. see here is an activity that doesn't require alot of energy - we could do it all day! He wasn't laughing...
Ken and Dan stopped over later in the afternoon so this helped Owen find a little bit of energy. He jumped in the pool once and then just kind of walked around the outside talking to Dan he wasn't up to swimming. They played a little bit more outside, then Owen went to Dan's for dinner. He said he had a blast and hasn't lauighed that hard in a looooong time! Thankyou!
He did return home with a headache - could be all the laughing... he laid down for a bit and took some medicine. That seemed to do the trick. Dan spent the night and they were good about going to bed.
This morning was rush rush as we got up and getting ready to hit the road for the parade. Owen went with the Walawenders to the Union Springs parade and ride in the truck with the softball team. He enjoyed that much more (riding with the girls) than hanging with Mom I'm sure! Tyler, Jake and I headed to Auburn - Jake was riding in the Fingerlakes soccer truck. So we got Jake dropped off and then Ty and I were plenty early to grab a good seat and set up shop. Now I remember why I come home swearing I will NEVER do another memorial day parade in auburn. It happens every year... just as the parade approaches all the people rush the streets not caring that there is a row of people in chairs who came early - they just barge through and stand in front of you!!!!! Then as the parade continues they KEEP edging out into the street... pretty soon there is barely any room for the people / cars to get down the road that are in the parade. Auburn needs to put ropes up to hold these people off the raod since they have no common sense!! Sorry every year I walk away from there so mad over ignorant people. God forbid you ask them nicely to move back a little as they are in the street - they will tear you apart with such nice language! I didn't even attempt this year....
Jakes truck pulling the trailer with all the soccer kids was approaching. Oh NO we are on the wrong side for Jake. We yelled but he didn't see us. So Tyler and I ran across the street and up the side walk. Tyler was yelling 'Jakey, Jakey' the whole way. finally we were in front of the truck again and cut back through to the road to watch him pass on our side. He smiled that beautiful smile and happy to see us. Tyler was so proud that we caught him.. as we walk back he said 'We did it! Yeah!' Then wiped his hand on his forhead and said 'whew..' how cute!!!
The rest of the day was low key. Nikki did get a haircut. I bought some dog shears and Chris went to work removing her winter parka! She absolutely LOVED it!!! I think it felt so good to her.
We have already eaten dinner and are planning a trip to the ice cream stand in a little bit to round out the weekend and then early to bed.
I think Owen had a just right weekend. Not too much a little playing with Dan and the parade. We do not want to overload again. I think last weekend was too much for him and just ran him down. We need to take baby steps back... letting his body adjust.
Tomorrow he has doctor appt at 11:45 to receive his pentanamine by IV to prevent pneumonia. He gets this 1xMonth. It replaces a pill form he was receiving as that seemed to lower his counts AND he also got that bacteria infection while on that so didn't appear to work well for Owen.... After that it is 2 weeks off from doctors appointment (we HOPE!!!), and just the pills at home before starting the next phase of maintenance that will be clinic vists for chemo by IV.
Have a good night!!!
Saturday, May 26, 2007 8:44 PM CDT
It was a pretty good day today. Owen coughed pretty good until about 11 this morning and then his coughs were very far apart most of the day. They are starting back up now, so this is much better and kind of more normal to spike in the morning and at night. He even spent quite a bit of time outside today. I hooked up the Banzai slide ( a big blow up slide) and he played on this for a bit. He went in the pool today for about 10 minutes. Not really swimming just hanging out in the shallow end. Later he hit some more golf balls. Then tonight we played Batman with Jake outside before the mosquito's came. So he was probably outside today for about 3 hours which is a record for Owen lately!!! He did fall right to the ground once when he was running - said his legs just gave out and he went down not that he tripped. He has had that happen before and I think that is why he is timid of any real running. He knows his limitations and shy's away from them. Hopefully as he gains strength for activity his confidence will increase as well.
Tyler and Jake had a full day outside. Tyler's nose is still running pretty good but his eyes are getting better. I am hoping not to have to make a doctor visit this weekend for Tyler but we'll see.
Hoping for another good day tomorrow and Owen getting back on his feet once again. Tuesday he gets his pneumonia prevention Pentanimine by IV and I looking forward to that to ward off anything trying to brew.
Have a good night!!!
Friday, May 25, 2007 6:36 AM CDT
Well after a short sleep we were back on the road to the pediatrician for Owens 10 year old checkup. She was concerned over his cough after hearing it and listening to his lungs. I told her we did just have an xray last night but it didn't really show anything. She had thought it sounded like pneumonia! So she was going to touch base with Dr. Cherrick to go over it. He is only in the 16 percentile for height now, which is most likely due to all his treatments - stunting his growth. He missed the first sound on the right ear for the hearing test and she repeated it several times. She said she would not be concerned at this point... so another thing to watch. We left there and went to Denny's for breakfast while we waited for 5C's call. I didn't want to head home and have to do a big U-turn if they needed to see him. I decided to take a vacation day since I was tired and hanging out anyways, it would give me a nice long weekend and hopefully some rejuvination. 5C called and they did not need to see Owen. Dr. Bright had called Dr. Cherrick and they discussed his xray and decided to watch Owen for now, but were putting him on Zithromax for 5 days. The antibiotic he received last night was good for 24 hours, but they wanted to continue to help him get over this. I was very happy. He justs coughs so much and it really scares me. My open wound from his last cough and ICU is still too fresh!
We arrived at Wegmans and they needed to consult the doctor as the prescription was written wrong and now no nurses/ doctors were in the office due to lunch so it would be after 1 before they had and answer. Bernie ( our most FAVORITE ) pharmacy rep offered to bring the prescription out to the house after work so I didn't have to run back in! How nice is that!!!! Thankyou Bernie.
As for us we spent the majority of the time outside. Tyler and Jake even went swimming! Owen came out and said ' Wow they're swimming? Is it cold?' Jake promptly answered, 'YEAH ITS COLD! Do you want to come in Owen' ha ha what an invitation! Needless to say Owen did not want to go! He did venture outside later around 6 when it cooled down and hit golf balls for a while. I bought him a JR set today while we were killing time. He is 10 now and able to play in the family tournament so he needs to practice up. His clubs he has been using were pretty beatup. The boys do a beating on them - so these are for Owen only.
Cayuga Elementary did a coin drive for Owen for Relay for Life and raised $540.00!!! WOW that is amazing!!!! THANKYOU!!! Owen brought home another 17 in change from a sixth grader at AJ as well for it!!! Sorry he didn't remember your name but we thankyou!!!!
Things are settling down and I am hoping to be in bed soon, I am so ready! Like I said the antibiotic he got yesterday is good until midnight and hopefully the dose of zithromax takes over from there, so there will be no more issues.
Have a good night.
*************************************
Long day and night yesterday! It started with Tyler getting up with his nose running galore and eyes all red and filled with goop. No school for Tyler! Sorry I fogot to call!!!! He will not be going today either. He seems to be feeling ok not great and played most of the day but was pretty congested and a very bad nose all day. He kept pointing to his eyes so I think they stung but he is on the antibiotic for his eyes.
Mom got Owen up to take Jake to school and then they all went to her house. He fell right back asleep there and slept until 1:30 when I picked him up to go to the therapist. His temp started at 99.5 and was up to 100.3 now so still low grade. The therapist went well. He really liked Darren and they played board games. Owen said he didn't really talk about himself much he needs to get to know him before he is comfortable - makes sense to me! He went back home and fell sound asleep again. Mom woke him up again to work with Miss Tracey and he practically fell asleep working with her. After she left he fell back asleep and did not wake up until 7pm!!! So he basically slept all day! He woke up crying and said he felt awful. I touched him and he was HOT. Took his temp and it was 101.9 - time for the doctor again. Dr. Sill was on call and wanted him to go to the ER for blood cultures and an antibiotic. The ER!!! I HATE going to ER - it is an all night affair. But since he was most likely NOT going to be admitted this is the route to take. Normally he was going to be admitted and so we got to skip the ER and go straight to 7H on other trips.
Took his temp before we left and it was 102.1 so going up. We arrived at the ER at 8pm and he was feeling lousy. Luckily due to him having Leukemia we were ushered right into a room and the resident was right there to check him over. She heard some abnormal air in the left side of his lungs and ordered a chest xray. He also had a bad headache and when she pressed on his cheeks he said it hurt really bad so she was sure he might have some sinucitis. But still looked mostly something viral he was fighting.
Our nurse was a very nice guy but speed was not his best side!!! It was have taken him an hour just to set up to take blood! First he got the IV started - they have to take a periphyrl blood draw as well when doing cultures. Then he needed to access the port. I could tell he was nervous as he kept saying we needed to guide him he was not a nurse from upstairs and to let him know if he was doing ok. I asked him if he would like me to do it... the look of relief just flowed... ' You do that? By all means you can do it!' So I accessed Owen and took his blood for the port cultures. Then Owen finally got some tylenol to help relieve him. His temp was now only 101.3 so it had come down... at first I was like hmmmm maybe I should have waited to see if it stayed high for a bit.. no with my luck if it had come down it would have spiked again at midnight!!!
Off to xray. As we came out of xray there was Brooke (Owen's wife from 7H!) The rumor mill had already reached the floor! I said we can't even sneak in huh? Nope- she has sources! So that was good for Owen - perked him right up!!!
Resident came back and his xrays looked ok - about the same as on the 30th - a little residual but she didn't think anything to be concerned with. His WBC had dropped from monday from 3.1 to 2.4 and ANC from 2500 to 1680 but was still ok - he wasn't neutropenic which was the key to not being admitted. So he got a dose of IV antibiotic over an hour and we were released to go. We have to call 5C this morning, check in with how he is feeling, see if there is any news with the culture and determine if they need to see him for a follow up. He has his pediatrician 10 year well visit at 9 so hopefully if he has to go they can get him in right after that.
So with all that said we arrived home at 2:30am!!! It is Murphys law isn't it... I was going to get to sleep in since Tyler wasn't going to school, Owen didn't need to be to the doctor until 9 (so no sense going to work for 45 minutes)... no such luck... late night so I got less sleep than normal!
I will let you know how today goes....
Wednesday, May 23, 2007 8:37 PM CDT
Not a good day. Owen woke up at 6 and coughed for about 40 minutes. A little after 8 Mom called he had a fever.. 101. I called the doctor and they felt that since he had counts, and they knew he had croup that the fever was due to this. As long as his fever didn't go above 101.5 he was ok to stay home. If it went that high he needed to come in for cultures and antibiotics. We weren't to give him tylenol so that we knew where his fever was. He stayed in the 100's most of the day and never spiked again. He wasn't feeling good though. I was going to skip golf as I didn't want to put him with a sitter. At 4 Chris called and was almost home... Yeah I get sanity night! Chris called while I was golfing to say Owen was crying that he had a really bad headache and could he give him anything. I told him to go ahead (his fever was 100.3 then) since he had remained steady all day.
Tomorrow his class is going on a field trip to Seward house and then McDonalds so even if he is feeling better I have opted to skip this - he is already dealing with enough and doesn't need exposure to more germs. He has his appointment with the therapist at 2 so hopefully he will be up to this. Friday he has his 10 year appt. with the pediatrician so if he is still not feeling good at least it will be another look at him to make sure he is good.
Tyler got his hair cut tonight. He is so bad and HATES his hair cut so we are unable to take him to a hairdresser any more. Daddy does the buzz cut every once in a while which is too bad, he looks so much better in longer hair. He was proud of his hair cut though - although not at the time he was getting it!!!!
Have a good night!
Tuesday, May 22, 2007 8:09 PM CDT
Happy 10th Birthday Owen!!!!
Owen got a lot of cards today for his birthday - Thankyou everyone!! Yesterday he got a signed Jerry McNamara picture and a gift certificate to Carousel mall from 5C!!! Wow thankyou!!!!!
Owen had a good day. Started a little shaky. Mom brought him to school and thought she would be doing a big U-turn and going back to get him. He was coughing alot and said he didn't feel too hot. We wanted to try and get him there to see if that helped to perk him up. It is the fight to get him there but I think once he is there he settles in and realizes how much more fun it is to be there than home all day. I kept calling Mom wondering if he was home... answer was no each time! He made it all day and even stopped to get ice cream with Dennis and Sam on the trip home. Thankyou!!!
He brought in blueberry bread and banana bread to celebrate his birthday at school. He said he did go to the nurse at 2 - he was exhausted and fell asleep. But that is ok, he is fighting this cold and not use to long days so I am happy with that. He came home with a smile on his face!
He went with Aunt Anna and Megan tonight to Resee's to play golf and eat for his birthday. So he got to have the night about him and not go to Jakes FOSPA night. Solved that issue... Thankyou Anna and Megan for making his night!!!
FOSPA night was fun. Tyler, Jake and I went. They loved hanging on the playground... it was a little hard to convince them to come eat but they eventually gave in with the promise to return to the playground. They both ate real well - mostly salad which I love that they eat the good stuff! Tyler ate lots of lettuce and Jake ate carrots, cucumbers and tomatoes. Then off to the playground again. As I was watching Ty - one of the mom's came up and said Jake was looking for me - he had fallen and was crying. I did find him and he had to show me where he fell and bumped his head. As he was going over to the playground I saw blood on his leg. So I stopped him and looked for a cut... hmmm none. Then I stood up and on the top of his head was blood! He still had to show me where he hit it. Then they were taking group pictures so he wanted to do that... FINALLY I got him to go in the school so I could wash it good and look at it. It was just a tiny cut - the blood made it look worse. I asked him if it hurt and he said 'YEAH!! It hurts real bad' So I asked if he was ready to go home... 'WHY??? No I don't want to go I want cake' Well okay - I guess we are fine!
It is sad to say that was my very last FOSPA class... sad that all my babies will now all be in school come fall...
I did meet with Darren the therapist today. I think Owen is really going to like him. He is younger - late 20's or early 30's and real easy going, easy to talk to. I think Owen will bond with him and enjoy have a male figure as a therapist. I wanted a woman at first as Owen is such the Ladies man but I think this guy seems like a perfect fit for Owen. He will not direct Owen, it will be play therapy so very similar to what he did with Ruth in Syracuse. He says this will be Owen's 'safe place' where he is in control and lead things to whereever he wants. Owen's first appointment is this Thursday at 2pm so he will need to leave school early. Eventually as we see how Owen does we hope to move his sessions to the school so he doesn't have to be pulled out as much. But this is a start and a much needed one. Owen definately has some mental issues and needs to regain his confindence and spirit that he use to have for life.
Have a good night!!!
Monday, May 21, 2007 6:21 PM CDT
All is well. Owen's cough got worse - it was like he couldn't really cough it was that dry half cough and just kept coming and drove him crazy!! Still no fever and finally out of exhaustion I think he fell asleep. He slept pretty good once he fell asleep. This morning I had to take blood and after stirring him he started to cough again. This time it was really deep barky cough. Great... he was going no where I wanted him checked. His blood work came back and his ANC had dropped from 6000 last monday to 2500 today. But he also was off of steroids so wasn't sure if this drop should happen. His WBC is 3.1 and Hemoglobin 9.7, platelets 110. So all looked ok.
I called the doctor and they said it probably was viral but if I wanted him looked at he could come at 1. I knew I would feel better having him looked at since last time we ended up in ICU it started as a cough w/ no fever! So over we went, Owen wasn't feeling good and even said he wouldn't 'mind' staying - he was nervous!!! Oh great... I did have a bag packed - to ward off evil spirits!!! We arrived at 5C and Owen layed on the chairs. Ruth and Colleen came over to say hi and got talking about the big birthday tomorrow and Owen got to smiling and sat up and seemed to perk up. All his stats looked good, no fever - Oxygen level was 97 so I think he started to feel better. Dr. Cherrick felt it was probably viral after checking him over. It sounded like Croup, especially since it seemed to be worse in the morning and at night. He was wheezing though so she prescribed an Albuterol puffer for him. He was definately in a better mood coming home. He said he felt better and maybe part of why he felt so sick was nerves thinking of ICU again. Makes sense because I know I was nervous too of his cough! The drop in ANC was expected - it is high while on steroids so that was good to know!
We made it home in time to have tutoring with Miss Heath and Owen worked well and has even finished his homework for tomorrow. The plan is for him to return to school tomorrow.
He is a little grumpy right now as he realized on HIS BIRTHDAY is Jakes FOSPA picnic. So the day is about Jake not HIM. Of all things - him and Jake fight all the time so for Jake to have something really stuck it to him.... I told him he already had a full weekend and the FOSPA picnic will be fun and he can have his shopping day another day. He's not really buying it at this point.
Unfortunately today was my day to meet with the Therapist to discuss Owen and get his therapy going and I had to cancel due to taking Owen. I was able to reschedule it to tomorrow so hopefully we can get on track here and get Owen into some regular appointments. Nothing is ever easy!
Tyler had a pretty good day at school and was able to call me. He was so proud when I got home and came running - 'I call you - yeah!!!' So hopefully making it back to some good days with Tyler again.
Have a good night!
Sunday, May 20, 2007 6:42 PM CDT
Owen had a great night and a great time with the boys. Thankyou Dan , Thomas and Sean for spending the night!!!
They were up early 8:00 or so but not really sure what time they dozed off. DS had to be turned off at 11pm no exceptions. Today they were back at the DS in the morning but then they got dressed and played outside for a while before they got too cold and came back in. As they were syncing up again with the DS I kept hearing coughing..... I went in - Who is coughing - yeah I knew it Owen. He seemed to get better and I didn't really hear any more. The family party was today and we had fun and it was great relaxing with everyone - I was 100 percent ready before the party (a first ) and even went to go check out a house with my friend!
Owen got lots more cool stuff, spiderman towels, a pogo type stick, spiderman water game, spider man digital camera and of couse $$$ which Mom steels part of for the college fund!!! He was very happy. Thankyou!!!!!
Around 5 he started coughing again. This time seemed worse he couldn't get rid of it. I have an oximeter and he was registering 95 but went down to 93 for his oxygen level. My dad registered 0 so makes me nervous if it is accurate - or dad is a zombie not sure which is true.
Everyone left by 6:30 and Owen was still coughing. I did call the doc as this is how he started last time he got that bacteria infection. It was Dr. Sill on call who is the new head of onocology. Makes me nervous because he doesn't know who Owen is or his history. He felt that since he didn't have a temp (it was 99.9) that he was fine to stay home. I told him we were there middle of april for the similar cough and he didn't really run a temp then. So for now he just wants me to watch him.
Wow - what goes up must come down... at least in our household. Owen started crying tonight and asked me why God could not give him a break? It was his birthday weekend and still he had to be sick. We prayed to God together, and he felt better but is so nervous. (and I am double nervous) But for now we watch.....
Saturday, May 19, 2007 8:49 PM CDT
NOTICE:
Bottle and Can drive drop off has been extended until May 29th. I stopped in today with my truck full (yeah they were all ares - I hate taking cans back). I had heard from a few people they were confused down there.... The guy said there were 2 Relay for Lifes going on when he paused at 'The Citizen' team page. I said but they are different teams so it matters.. well the look on his face told me it all.. It doesn't REALLY matter since all money is going to the American Cancer Society but you like it to go to your team! So remember to specify Owen!
It was a good day! Owen slept late of course but woke up in a good mood. I had taken Jake to soccer practice at 9. He is doing good but a little lost, he just wants to kick and run not quite getting why they have to do all these little hits of the ball before the big kick. We headed to Walmart to pick up last minute things for Owens party today and for the family picnic tomorrow. Owen was in a great mood when we got home. Well at least until I brought up homework! ' On the day of my party? Are you kidding?' Hmmm NOPE - so once he realized there was no getting out of it he buckled down and completed it all except social studies book!! Thats for tomorrow he told me... ok I will let you go.
He even got outside today and wanted to ride his four wheeler. He was going very very slow - nervous but wanting to do it. So that was wonderful to see, he has not rode it at all this year and I don't even think he did last year... can't remember.
FINALLY it was time to head to Skaneateles for the party - Owen felt time stood still today. Owen was upset at first that Ty and Jake were going, we usually leave them with a sitter. But they both love it there and I figured would do their own thing and let Owen have his day. We had 18 kids! Course 3 were mine! 2 were well 'not' suppose to be there so technically I am not that crazy and was 13 kids. They had a great time - swimming was way too short of course! It was soo great to see Owen smiling ear to ear and laughing. Made me so happy, he really needed that and I am glad he was up to going. I was starting to sweat with such a slow start to feeling good this well. But it turned out ok and he was HAPPY! (And Ty and Jake were fine, and loving being there and didn't bug him at all!!LOL)
He received lots of wonderful gifts from everyone!!! Thankyou!! Lots of gift cards and certificates - right up his alley!! A spiderman3 poster - which he had been planning on getting with birthday money! Some really cool kickboards that are also squirtguns. And of course a couple of the new Pokemon DS games!! He was just beaming. He got knocked down in the scramble for the pinnata, but Pam helped him up and boom in an instant the kids filled his bag! What great friends!
We returned home with Dan, Thomas and Sean to spend the night. Unfortunately we had a little accident. I got out of the front seet and grabbed a bunch of bags and the camera etc. and bumped the door with my butt to close it - it was like slow motion.... I saw Jakes fingers in the door!!! NOOOOOOOO - too late - it snapped shut with his middle finder in the door. He didn't react at fist - but I whipped open the door and the pain washed over him. Poor thing!! His nail is black already and it did break skin. He hurt so much. It must be me!! I did the same thing to Thomas a couple years ago. I need to shut the door when all is clear and forget the bumping it shut! Jake finally calmed down and let us keep ice on it, but I am sure it will be sore for a few days.
I had to laugh - the four boys sat on the couch - noses in their DS' and barely talking. I said Wow is this a sleep over??? Why don't you pretend to play with one another like the ol' days before hand held games. Yeah I got the look from all of them...
Well I am off to bed and it is lights out for them shortly too. Tomorrow is the grandparents day so another full day tomorrow, but a little lower key...
Have a good night!
Friday, May 18, 2007 8:14 PM CDT
YEAH Owen went to school! YEAH Tyler had a good day! YEAH Jake took a much needed nap!
Owen got up and was ready to go. He stayed all day! Today was really a 1/2 day of school as the afternoon was a field trip to the County Office Building to learn about government. He returned home and fell fast asleep! First big outing!
Tyler had a field trip today too. He went to the Zoo. So not sure if his good day was because it was a fun day or he has turned the corner again... Monday will be the truth.
Owen was off to see Shrek with his friend Dan tonight for Dan's birthday. Tyler, Jake and I headed out to see it too. We were late as usual arriving at five minutes before six, and it was sold out. So tell that to Tyler as we stand inside the movie theatre!!! I did buy tickets for the 7pm but it was hard to tell Tyler we were leaving and coming back!!! Finally he walked out in tears, but he was soon happy when we pulled into McDonalds to burn some time. That is the way to go though - when I said 'Time to Go' both boys were down and putting their shoes on pronto!
The movie was great! Very funny - I think II was the best but this was good! Tyler liked the music and was dancing alot. Jake just couldn't wait for the babies - they didn't come until the end so it was a loooonnng movie of 'when are the babies coming?'
So today was a good day all around!!!
Thursday, May 17, 2007 7:46 PM CDT
Today started pretty crummy. Owen didn't even get out of bed until 12:30. I talked to him ( well he cried the whole time and didn't say a word ), and told him he HAD to get out of bed and eat something and get moving. He did get up, and after a bit was feeling better. He started to feel sick again. Said his stomach was just sick and he ached everywhere. Then he started to feel better again. I have no clue...
He did work well with Miss Tracy and perked up. He was in a good mood by the time I got home from work. After dinner Owen, me, Tyler, Jake, Pam and Sam all went for a walk. This seemed to make him feel good and being with Sam was good for him. After our walk he and Sam hit golf balls in the yard for awhile. Yeah some fresh air and outdoors!!!
He says he wants to try and go to school again tomorrow. At least there is 'desire' even if he hasn't made it yet!
I did speak to the therapist here in Auburn and I am going to meet with him on Monday to go over Owen's history and what we are experiencing with him. Then we will set up an appointment for Owen to see him later in the week. Hopefully this will help too. I think therapy will be good for him, we just never seemed to get it going before in Syracuse it was on and off so I am hoping we can get some sort of schedule and stick to it here.
Tyler had another bad day too. So true to my word all his videos are packed away. He hasn't realized it yet as we had been outside. But I am sure after he gets out of the tub he will be looking!
Jake seems to be the only one feeling pretty good lately! He still complains on and off about his leg but seems to have decreased alot. He is a nightmare with his iron though! He hates it and it is a battle to get it in!
Have a good night!
Wednesday, May 16, 2007 8:35 PM CDT
Another great day!!! Started out a little slow, grumpy in the morning but ended up great. He did run a low grade fever last night (100.2). He started crying immediately but I got him called down that he DID have counts so even if he spiked they would most likely tell me to give him tylenol and we would be staying home. It is only with no counts that a fever buys a trip to the hospital. He then spiked another fever tonight at 5:30 (100.4) so not sure what this means. It lasts about 1/2 hour and is gone??? He is still stuffy and a little cough but really feels great.
We went to the last Relay for Life Team Captain meeting tonight and Owen joined me. Everything is looking great and you guys are just awesome with the support and donations!!!! Tonight was a 'practice' lap to check out the lay of the land for those wanting to decide where to put their team tents. We skipped that - figured we did the cold last year. Hopefully this is it too - the practice night was cold and the real Relay will be warm!!! Reminder for anyone wanting to purchase the Luminara bags for the ceremony that night - they need to be purchased and turned in by May 30th so I can get your name to the person doing the presentation of the names. If you do it online still let me know as I have to actually fill out the bags this year. Thanks!!!!
We headed to walmart after that to order Owen's cake for Saturday - his birthday party. He is 10 on the 22nd - wow were did all the time go???? Unfortunately almost 4 years was dealing with Cancer! I was getting nervous that I should not have even booked his party - he is just not up for it but I wanted him to have something to look forward to instead of one more thing to be down about. But we are on day 2 of feeling good!
He wants to go to school tomorrow!! I am kind of letting him drive this time - I am not going to 'push' and perhaps this will help him ease in on his own terms. Tomorrow is only a half day so it is a good day to start back on.
Tyler unfortunately did NOT get his french fries today. I did not get my 2:30 phone call so I knew he didn't behave in school. So even though last night was a celebration I was not rewarding him if he can't behave. As soon as I got home I just stopped and looked at him ( I had not even read his notebook yet) He put his head down and said "SORRY". So now I knew it wouldn't be good! He really misbehaved. I packed up all of his DVD's in the house and put them away. I told him tomorrow all his videos would go away too if he didn't behave... again "SORRY". Movies are the way to Tylers heart. If he can't be out playing he is very much a TV boy unless I am actively engaged in something with him. He doesn't necessarily 'watch' them but he likes to have the movies always playing for back ground noise. He will not even be in the room and if you turn off the movie he will come running from where-ever. So he definately has his hearing tuned to that at least!!!!
Heres to hoping for good days for all my boys tomorrow!
Have a good night.
Tuesday, May 15, 2007 5:18 AM CDT
Awesome Day!!!!! Owen was in a great mood ALL DAY! Maybe the steroids (he had his last dose sunday morning) have worn off and the real Owen will return! I called the doctor and since I had pink eye medication they ok'd me just giving it to him. His anal area is very red and sore so they said to have baking soda soaks and to use desitin to relieve it. So that was nice not dragging him off to the doctor - I think that puts him in a spiral as well as he wants to feel better and with many trips to the doctor still happening that upsets him. He did all his homework today that was overdue and currently due! Worked great with Miss Heath. What else can I say.. he was chatty and just awesome today!!!
Then celebration #2 - Tyler went pee in the toilet!!! Right after I put him in the tub he asked to go potty. OK so I take him out and he pushed his belly button -not sure why he thinks this is the key :-) but sure enough he went! We both started jumping up and down and yelling 'yeah'!!! He was grinning ear to ear and soooo proud! Chris came running up with all the yelling thinking something was wrong. So they we had to jump up and down and yell some more with Daddy! Back into the tub. He asked again to go potty - hmmm OK, out he comes and no luck. So back in. He asks AGAIN to go potty. OK this is going to be a game - but I didn't want to deter him. So out he came - and oh my gosh he went a little more!!! So celebration time again!!! As I was dressing him for bed he said "Mama... potty... french fries??" I started laughing... yes Tyler I will bring you french fries - tomorrow. Hopefully a little reward for the start will keep him going in the right direction.
So things are definately on a high tonight in the household. Wow does that feel good!
Have a good night!
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Owen had a pretty crummy day yesterday. I should never open my mouth about possibly getting back in the swing of things as then it starts to crumble.
He had a dentist appointment in the morning. That went well although he needs to brush much better - he had a lot of plaque. They want me to get him an electric toothbrush to help. Before the dentist he was hungry but after we left the dentist he just wanted to lay down - he wasn't feeling good. I took him to Mom's and he fell asleep there. He woke up for lunch and was back asleep in the afternoon. He is quite stuffed up so looks like that sore throat has turned into a cold.
I got his blood work back and all looks good. He has a great ANC 6000 (normal is 1500-8000), Hemoglobin is 12 and platelets 107 so all looks great and no adjustments were done to his medications. His Bone marrow test results were back and they are now 1cell in 500 so a decrease from the 3 before. I asked the nurse what this meant since there was still 1 and she said Dr. Cherrick would need to discuss with me what she wanted to do. So I was a little uneasy as 1 cell is still 1 cell right?! I ended up emailing Zarina (she was our NP ) to find out were all his other bone marrow tests 0 when they were said to be good or a low number. Bless her heart she called Dr. Cherrick and emailed me back! She said the scoop is basically that she thinks Owen is fine. The FISH test is looking specifically for cells with the MLL gene rearrangement. The marrow several weeks ago showed 3/500 (that was when his counts were low), then his counts recovered and the marrow showed 1/500. If he was relapsing the number of cells would have gone up when his counts recovered. Previous marrows did always read as NEGATIVE ie 0 cells. It is hard to say how accurate the test is with such small numbers, the few cells shown might just be artifact. The plan right now is to repeat the marrow when Owen's next spinal is due - which is in July. I will talk with Dr. Cherrick on this more but I feel better now hearing the words that they don't believe it is a relapse!!!! Thankyou Zarina!!!
Owen did do a little work (and I mean little - it was a chore!) with Miss Heath and I guess that is what we need to focus on now - pushing him at home to get more done and not worry about getting him in school, just keeping him on track. When I got home from work Owens eye was really itchy and he said he had had alot of puss come out. Sure enough his one eye was very red and there was discharge. I do have pink eye medicine and used that on him but will check with the doctor today as his butt is red and sore as well. So see what is going on here - hopefully it is all just from the cold he has starting up.
Last night I went to dinner at PB5 with a few of the girls I had worked with at Siracusa's restaurant. We have not gotten together in years and we use to have so much fun working together! We just laughed all night long remembering times before and catching up on our lives now. I had an awesome night and it felt so good to laugh so much. The guy at the next table came over as he was leaving and said he has never seen 4 girls have soooo much fun before! Thankyou you Sue, Sue and Tricia, for a wonderful night - I needed that! We are hoping to do this a little more often and round up some more of the girls.
Today is Tylers Art show at the school, so I am hoping to scoot out and go see that. He has been acting up at school again so need to get him back on track. He has been in quite the mood at home as well so it is not just school. Last night he ended up in Time out because he just wouldn't listen and eat dinner, and threw himself on the floor when I took the toy he had away to eat. Papa Fred was watching the boys so he was a little wound up to have his beloved Papa here! Thanks Dad for coming over to let me get out!!!!
Jake has his last FOSPA tonight (next week is the picnic). So this is MY last FOPSPA class ever!!! All my babies have grown up!!! It is a sad moment when you realize they are all going to be in school!!! Well I think my Mom will be celebrating LOL!!!
Have a good day!!!
Sunday, May 13, 2007 6:00 PM CDT
HAPPY MOTHERS DAY TO ALL THE MOTHERS OUT THERE!!!
I especially want to say Happy Mothers Day to my mom who has been my right hand for a long time and especially through this long journey our family has been on. Thankyou Mom - I couldn't have gotten through it without you!
The AJ Smith Bottle Drive was a HUGE success. No official numbers yet - but they are guessing around $300.00 for the Relay for Life!!! Wow that is incredible thankyou to everyone who worked the fundraiser and all of those who contributed. The hearts of the people in this community are so huge!!! Thankyou!!!!!!!
Owen has had another up / down day. Happy one minute, sad the next. I have to do a blood test tomorrow to see where he is at. If he has remained stable I think we are going to start him on 1/2 days at school. He will go in the morning and Mom will pick him up after getting Jake at pre-school. This will ease him back in and ease us back as well. I am a little 'gun-shy' with all that he gas been through in the last few weeks.
Hopefully I will get the call from the doctor tomorrow that all is clear.
Potty training boot-camp did not go well this weekend. Tyler went through many underwear and shorts on Saturday. Although we went to the bathroom every hour there was no success but soon after he would be wet! Today I was going to have him just in a long shirt and no botttoms outside (good thing we are in the country!) and see how that worked but alas it was FREEZING and this was not an option. WHEN is spring coming to stay???
Have a good night!
Saturday, May 12, 2007 7:36 PM CDT
It was a mixed up day. At 2:30 this morning we got a call from Mom - her hot water heater blew. Chris went over and got her pumped out. He didn't return until 5:30. At 4:30 the alarm went off for Owen to go hunting. He jumped right out of bed and wanted to shower before he went. They were out the door at 5:00. Chris headed back to Mom's at 8 when HEP opened to get her new hot water heater and get her back up and going.
Jake, Tyler and I headed to soccer practice. He loved it and listened very well. He was so proud of how fast he can run in his cleats. I think he will do very well. I was feeling bad that I should have signed Tyler up - when we first got there he was running and kicking the ball. He ran their warm up lap with the team. But then he was done and wouldn't do anything else just wanted to sit with me. So I guess warm ups will suit him well!
We went to Mom's after to pick Owen up - Steve had dropped him there. He was exhausted and didn't want to go to the bottle drive - he just wanted to go home and lay down. He was very grumpy and not talking. This is what he has been doing lately - not speaking unless he is really involved and doing something fun - otherwise he spirals into a depression. The local counselor we are setting him up with is returning on wednesday and should be calling to get that going.
He dozed at home and then took a shower - his back was bothering him. When he got out he asked if Mr. Jorgenson (one of his multi-age teachers K-3) was coming so I told him to give him a call. Sure enough Mr. J was coming over in a little bit. This put a huge smile on his face and he became very chatty again.
Mr. J and his 6 month daughter came and the boys just loved her!!! She is a beauty and so happy! Jake had to dig out everything he owned to show her (dinosaurs). Then Mr. J and Owen played Golf on the PS3 and I got to hog Ella. Owen was kicking Mr. J's butt pretty good so he thought he should borrow the PS3 to go home with and practice. I said Owen should let him and we would borrow Ella - because he couldn't practice PS3 with a baby around!! He thought he would get in to much trouble with Mrs. J for that though! LOL!! But Owen was in an awesome mood and just loved having him here. Thanks for making his day Mr. J!!!!!!!
He did some more downtime after that and then late afternoon his friend Dan came over for a bit. Owen was pretty tired and they just watched movies and played a little DS. Dan was so good in helping Owen with anything he needed and making sure he was ok - because Owen was so quiet - what a great friend!!! Thanks Dan!
Needless to say we have a tired household with the early morning so it is off to bed! Owen has gotten very quiet again, and says he just 'aches' all over. It doesn't hurt this is different, he is just achy. I don't like it when he feels this way... although I have been very good about not stressing about the bone marrow test... things like this scares me to death. Hopefully we will get the news on Monday.
Have a good night!
Friday, May 11, 2007 8:24 PM CDT
Happy Anniversary to my husband Chris! 11 years - oh my gosh where did the time go????
Owen had a so-so day. He was grumpy and said he just didn't feel good all over. Finally early afternoon he ate and that seemed to perk him up and he felt much better. He worked on some homework but didn't accomplish much else. Pam arrived and they did some 'laps' around the house. I told him all I want for Mothers day is to take a good long walk with him!!!
Tyler woke up in a very grumpy mood at 6am!!! Needless to say his mood did not improve through the day and he got in trouble at school for not behaving. Hopefully this was just a fluke day and he will get back on track. Tomorrow is the first day of heavy duty potty training!! I am putting him in underwear and he will be made to use the potty every hour ( at least that is my goal!) I am so tired of the diapers and he is almost 8!!! I know they say 8 is normal for down syndrome - but Tyler understands it now!!! As soon as I told him underwear tomorrow he asked me for Frenchfries and chicken - the reward of McD's if he ever does it!!!
Jake has his first soccer practice tomorrow morning at 9am. He is so excited and showed us how fast he is in his new cleats!!!He is already lightning fast so I can't believe he can get any faster! I think he will be a trip at soccer - he runs ALL DAY long so this sport is right up his alley!
We received another dinner tonight! A Baked chicken dinner and brownies for dessert. We are soooo spoiled!!! It has been a great week with no cooking - I am in heaven! THANKYOU EVERYONE FOR YOUR KINDNESS - WE APPRECIATE IT!!!!! Your kindness is truly special.
Owen just finished his shower and he says his ankles are bothering him but otherwise feels good. We are off to bed - Owen is going to attempt hunting again with Uncle Steve and they are getting an early morning start (5am!) The outdoors and walking will be so good for Owen, and time with Uncle Steve always perks him up.
Tomorrow the Union Springs PTO will be hosting a can and bottle drive in Owens name for Relay for LIfe at AJ Smith School on Homer Street - from 10am-12. Depending on how Owen feels, when he gets home, etc. he may stop in to say Hi! THANKYOU FOR YOUR SUPPORT AND THANKYOU TO THE pto THIS IS AWESOME!
Have a good night!
Thursday, May 10, 2007 8:42 PM CDT
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Union Springs PTA will hold a can drive for the Relay for Life in Owens name this Saturday May12th from 10-12 at AJ Smith School. I am going to try and bring Owen. So you can bring your cans to the school vs the Frosted Nichel if that is easier - all goes to the same fund! Thankyou for helping out!!!! ****************************
Owen woke up this morning with a very sore throat. He also had 3 boughts of diahrea. I called the doctor and they had me bring him over. I noticed while we were waiting that his hands were all blotchy too. Dr. Cherrick looked at his throat and it was red but she did not think it was strep but did the culture anyways. She did say though with all three symptoms (throat, diahrea, and hands) it could be a reaction to the methotrexate pills. Generally you see it when the kids are on the high dose IV form but with Owen we don't rule anything out - he doesn't like to do 'normal'. So we will keep an eye on him and see if the symptoms get worse - if so then his dosage may have to be adjusted. Mom also has a very sore throat so it still could be something viral.
His mood was up and down today. When his throat flared up he was sad and grumpy but otherwise he was very chatty and happy. It did not bother him to eat though - steroids can make there way through anything!!!
Miss Tracey came tonight with a big tray of brownies!!! Oh they are soooo good... how am I going to wear shorts with all these goodies around??? Yeah I know I don't HAVE to eat them LOL!! Thankyou!!!!!
Owen put the knife in Miss Tracey though... he looked so sad going up the stairs to work... I said oh Owen you look like you are being taken to the Lions Den!!! Miss Tracey came out of the room when I was upstairs and said he was working well and not wanting any help.... but just crying the whole time he was working!!! I told her to relax.. he was being dramatic because he CAN work with a sore throat. He did end up (as hard as he fought it) to put a smile on and laugh when he finished.
His friend Sean called and wanted Owen to come play but I asked Sean to come over here so I could keep an eye on Owen. It did brighten Owens day to have some friend time - thanks Sean!!! So see Miss Tracey if he hadn't worked he wouldn't have been allowed that so imagine how happy he was NOW that he did his work!!!! Sean stayed for 1.5 hours and by the end I could tell Owen was getting very tired ( not that they did much - they are two peas in a pod and have to be forced to move off the couch!!), but his throat was starting to flare up again and his legs were bothering him.
We had hodge-podge dinner tonight... getting to re-sample all the good food we had all week! It was great because all of the dinners were soooo good. We can't thank everyone enough for your generosity - it was wonderful not rushing home to make dinner too!!!!
Have a good night!!!
Wednesday, May 9, 2007 8:50 PM CDT
All is going well. Owen had a pretty good day. We have to start working on getting him adjusted to earlier hours again - gets in that bad up late and sleep in mode with no school and when in the hospital. He didn't even wake up until 11, and then is grumpy and has to wake up for another hour before he is functioning.
We had another wonderful meal delivered tonight from Cayuga school by Mrs. Vasquez! Owen has been so happy to see her!!! Dinosaur BBQ pulled pork, potato salad and apple crumb pie!!! THANKYOU!! We did not get the chance to try it out yet but it sure looks good! Miss Heath came tonight for some tutoring as well. I had 'sanity' night (golf). I only got to finish 6 holes though because my sitter had a baseball game and I needed to get home - but I'll take the little bit of time with the girls!
Kim took the boys out for hotdogs, icecream and miniature golf tonight. Jake got a hole in one!!! When he got it he yelled "Holy.... shoot" Whew! Kim said her and Owen froze when he started to yell. Owen had fun and it was good to get him up and moving more. That is our goal everyday keep increasing his amount of play time and build up his strength. He still has leg pain but it is only at night and I have to hope this will continue to get better as his strength improves. He is on steroids again though but at least only for 5 days!
Have a good night!!!
Tuesday, May 8, 2007 8:48 PM CDT
Long day at clinic. We left at 7am and arrived home at 5pm!! We arrived home to a nice spagetti dinner, delivered by Miss Heath from AJ school!!! Thankyou - that was wonderful to walk in and not have to do a thing! I could really get use to this... The sauce was great - homemade!!!! So we had a great meal before having to rush back out for FOSPA. thankyou thankyou thankyou
Owen had anther bone marrow test along with the spinal tap today. The detailed FISH test was back and there were 3 (out of 500) bad cells. Dr. Cherrick said she was not 'overly' concerned, but wanted to do another test to verify what if anything was going on. I am trying to take her advice and not freak out and start stressing. It will be several days before the test is back and I can not but myself through the anxiety that we did before. So I am going to take one day at a time and breathe....
We headed up to 5C after and Owen got 2 units of blood so he did not finish until after 3. But WOW to see the color in his lips and face now! He looks like he has lipstick on! I guess I got use to seeing him so pale and white lips that it was shocking. They did another blood sample after to check his iron levels to see if his ex-jade dosage needs to be changed again.
Owen is officially on Maintenance!!! He is on alot of oral medicines now:
Steroids: 5 in a.m. 4 in p.m.
6MP: 2 on tuesdays, 1.5 all other days
Methotrexate: 8.5 on tuesdays
Calcium: 1
Exjade: 750mg daily
So tonight he had to take 14.5 pills! Needless to say I stopped on the way home to pick up a pill box to organize the days / nights for all this!
One of Owen's good pals from 7H - Dominic - is in ICU. He basically had the same thing Owen did where he went septic and blood pressure dropped, and breathing issues. He was neutropenic (low immune system) and started having fevers. He is stable now but still on oxygen. I went and visited with his mom for awhile today. Now I know what I looked liked (exhausted) when Owen was there. Please say a prayer for Dominic and his family.
Have a good night!
Monday, May 7, 2007 7:31 PM CDT
Owen has moved up to the number 2 fundraiser in the Relay for Life - Thankyou!!!!! From now until May 19th the Frosted nickel (by St. Mary's church) will except bottles and can returns in his name for the relay. So if you have extra cans around the house bring them down for a very worthy cause. I had intended for Owen to be present on a Saturday to say Thankyou to anyone coming in with a donation but it is not allowed. The owner said it can be intimidating and people feel they need to donate when they may not have come for that. So he will not be making a guest appearance but sure does appreciate any contributions!!!!
All is well. Owen finally passed his counts to re-start his schedule. So tomorrow he gets the spinal tap with chemo, and then he has to go to 5C for a blood transfusion. He did not rebound in that area and has gone down even more.
Counts:
WBC 4.6
Hemoglobin 6.5 (transfuse at 8)
platelets 80 (needed to be 75 for chemo)
ANC 4370
So everything else looks good, and his ANC looks great. So back to his schedule. If Owen can remain stable and his system does not crash from the chemo tomorrow, we can hopefully look at getting him back to normal. It shouldn't - however the words 'should not' and Owen don't ever seem to work together!
Miss Tracey came today for tutoring and presents galore! Lots of cards made from Owen's class - super job - Thankyou! He misses all of you too! She brought T-shirts for the boys (spiderman - hmm wonder who that goes too!), Shrek and Sponge Bob. Thankyou thankyou!!!
Mrs Vasquez also came out bearing gifts from both AJ and Cayuga school. An Italian macaroni & cheese dinner. It was sooo good. We have never had that before and loved it - definately need the recipe for that - it was a hit. Lots and I mean Lots of cookies. A huge tray of chocolate peanut butter cookies, and 2 big bags of peanut butter cookies. I am not a baker so homemade goodies are a hit here! We also got an envelope with gas cards and a gift certificate to Outback Steakhouse ( I see a Rib night coming up!!) Thankyou so much everybody at AJ and Cayuga. You all have stood by us for many years now - we couldn't have done it without your support! Thankyou so much!
I made Owen go outside for a while, whining the whole way! Wow where did he come from??? Tyler, Jake and I would stay out all day! I LOVE warm weather, makes you wonder why I live in central New York then??? Anyways out he went. First he just sat on the deck and ate some cheese and crackers. Then down to the yard and he hit the baseball quite a few times.. I am sure I will hear how his arm hurts tomorrow. But he lasted about 45 minutes total outside and he was done. I guess baby steps to the outdoors and exercise will get him there.
Have a good night!!!
Monday, May 7, 2007 7:31 PM CDT
Owen has moved up to the number 2 fundraiser in the Relay for Life - Thankyou!!!!! From now until May 19th the Frosted nickel (by St. Mary's church) will except bottles and can returns in his name for the relay. So if you have extra cans around the house bring them down for a very worthy cause. I had intended for Owen to be present on a Saturday to say Thankyou to anyone coming in with a donation but it is not allowed. The owner said it can be intimidating and people feel they need to donate when they may not have come for that. So he will not be making a guest appearance but sure does appreciate any contributions!!!!
All is well. Owen finally passed his counts to re-start his schedule. So tomorrow he gets the spinal tap with chemo, and then he has to go to 5C for a blood transfusion. He did not rebound in that area and has gone down even more.
Counts:
WBC 4.6
Hemoglobin 6.5 (transfuse at 8)
platelets 80 (needed to be 75 for chemo)
ANC 4370
So everything else looks good, and his ANC looks great. So back to his schedule. If Owen can remain stable and his system does not crash from the chemo tomorrow, we can hopefully look at getting him back to normal. It shouldn't - however the words 'should not' and Owen don't ever seem to work together!
Miss Tracey came today for tutoring and presents galore! Lots of cards made from Owen's class - super job - Thankyou! He misses all of you too! She brought T-shirts for the boys (spiderman - hmm wonder who that goes too!), Shrek and Sponge Bob. Thankyou thankyou!!!
Mrs Vasquez also came out bearing gifts from both AJ and Cayuga school. An Italian macaroni & cheese dinner. It was sooo good. We have never had that before and loved it - definately need the recipe for that - it was a hit. Lots and I mean Lots of cookies. A huge tray of chocolate peanut butter cookies, and 2 big bags of peanut butter cookies. I am not a baker so homemade goodies are a hit here! We also got an envelope with gas cards and a gift certificate to Outback Steakhouse ( I see a Rib night coming up!!) Thankyou so much everybody at AJ and Cayuga. You all have stood by us for many years now - we couldn't have done it without your support! Thankyou so much!
I made Owen go outside for a while, whining the whole way! Wow where did he come from??? Tyler, Jake and I would stay out all day! I LOVE warm weather, makes you wonder why I live in central New York then??? Anyways out he went. First he just sat on the deck and ate some cheese and crackers. Then down to the yard and he hit the baseball quite a few times.. I am sure I will hear how his arm hurts tomorrow. But he lasted about 45 minutes total outside and he was done. I guess baby steps to the outdoors and exercise will get him there.
Have a good night!!!
Sunday, May 6, 2007 6:47 AM CDT
Spiderman was a HUGE success. Owen loved it. It was also both his and Dan's first time at the Drive-ins so that was an awesome experience as well. Owen was always comparing the book to the movie and I had to hush him a few times to not give it away for Dan (ok and me too!) I think they did throw alot of story lines into one movie ... but the bottom line was Owen thought it was AWESOME!!!! Once his immune system stays stable for a bit he wants to go to the theatre to see it again - you know we wouldn't let him turn the volume on full blast like the theatres!!! I know the people in front of us were not happy. I had to turn the truck on every once in a while to de-fog and when you turn it on the lights come on!!! I would get them off quick - well pretty quick but I am sure it didn't make them happy!
Neither of the boys were tired at the end of Spiderman so we stayed for Ghost Rider. NOW this was definately a dumb movie.. and a little too graphic. Owen feels bad Brooke!!! He told you this would be an okay movie to take her young boys too!!! "What was I thinking' he kept saying!!! Yes it was pretty gross at times! But Owen thought it was cool... So needless to say we did not get home until 1:30am!!! Yikes!! Thankyou Sue and Dan for a great night!
I had to wake Owen at 8:30 as he was going turkey hunting with Uncle Steve. They only lasted a couple hours as there was nothing going on. So next weekend they will go EARLY for a better chance. With the spiderman movie - the 4:30am wake up call wasn't going to work this week! Thanks Uncle Steve!
Samantha and Rachel came over later afternoon and got Owen up and moving outside and playing so that was great for him. It was a little chilly out with the wind and his bald head got cold - so there he was running around with a winter hat - but he was OUTSIDE... just what the doctor ordered!
We ran up to the springside later - Sam T's prom was tonight and I wanted a peak at her! Absolutely gorgeous!!! The dresses were so pretty - the colors were awesome this year. Sam wore an orange dress - but oh my gosh it was gorgeous! She was on cloud nine and should be - prom night is very special!
We loaded up and headed to Papa Freds for dinner. What a dinner!!! Crab legs, steak, potatoes, salad! Yum - thankyou!!! Jake loved crab meat - not sure if THAT is a good thing! Papa couldn't open it fast enough for him. Tyler just worked on the hotdogs and asparagus! It is just great that he has become such a veggie boy.
Owen got a little grumpy and dramatic when he fell down while wrestling and then screamed that he was in extreme pain. This is where the hard part comes in. He was just sobbing in pain and couldn't move... we knew he did not fall that hard (you know big kid Papa was right in the middle of the action!) so he couldn't be hurt as bad as he was screaming. He finally calmed down and then was laughing and giggling over stories. It is so hard - we try and try to tell him he can't do this it makes it so hard on us.
So it was a full day and lots of fun. Looks like another nice day to day - and hopefully a little less windy and warmer. Another day for outdoors play!!!
Have a good day!!!
Friday, May 4, 2007 5:29 PM CDT
Spidey fever is in the house!! Unfortunately that is all he has been obsessed about. He went to spend the day with Papa Fred but could only think about getting home to the new spiderman game he saved for.
My friend from work Mary Ann brought us a DELICIOUS ham dinner tonight - per Owens request! It was great and so good to have a non-hospital meal - complete with real mashed potatoes - yum... we only get them on special days - LOL!! THANKYOU THANKYOU MARYANN IT WAS GREAT! I may even let you watch my kids someday ( haha - love ya!)
Owen is doing some homework now before we depart for the movie. We are going with his friend Dan and his mom Sue. We are going to the drive-ins though as we are limiting Owens exposure to germs until we know his immune system is staying stable - it has been on such a rollercoaster!
Looks like a fun night!!!
Thursday, May 3, 2007 9:31 AM CDT
We are going HOME!!!!
I'll update more later - I need to pack before the doctor changes his mind LOL!!!
Well I don't know how he did it. But through the night there was no fevers and his ANC went up to 2000!!! Those were the key factors in letting us come home. I think it was all his research into the spiderman movie last night - he was up until almost 1am watching every trailer he could find on it. He has been so nervous about not making the opening night of Spiderman3 he must have put all his superhero powers together and it worked! Wow it feels so good to be home.
Jakes face lit up - he was sound asleep on the couch when we arrived but when he woke up - he gave that beautiful smile and said 'Mommy your home!!!' We were off to the sunny outdoors to play. Tyler was going crazy on the bus when he saw us home. I had told him when he called me that I was home... but to see his face when it was really true that I was here!
Daddy was even home by 4:30 so we had a very nice family dinner together. Tyler and Jake are out riding the four-wheeler with daddy now and the smiles are from ear to ear!
Owen is on an antibiotic but it is by mouth for 7 more days just to ward off those evil spirits. Luckily his wife Brooke was working this morning so he even got to say goodbye to her and she told him she only wanted to see him off the floor! Hopefully this works!
Tuesday if his counts stay up, he will have the spinal tap down with the chemo. His platelets still need some work they are only 53 (but up from 44 yesterday) and they need to be 75. His hemoglobin is still low 7.3 and usually they do a transfusion at 8.0 but since he is feeling so good we will hold off. His other counts all look good and still show he is producing more cells so the hope is this will rebound on its own - the less transfusions for Owen the better.
Wednesday, May 2, 2007 7:52 PM CDT
We are still here. Owen ran another low grade fever last night at 9pm. His counts continured to drop today, so he is getting close to being neutropenic again. (ANC<500) So the way it was explained to me was that since he is running low grade fevers and his counts are dropping that something is doing some pretty good damage inside him for him to still have symptoms being on an anitbiotic.
So rather than risk him going home and running a high fever and becoming sepsis. This is similar to what happened to him just a few weeks ago when his breathing became irregular and eventually sent us to the ICU. So YES we are very happy to stay here and NOT have that happen again. Dr. Souid seems to believe it is the bacteria that was in his lungs a few weeks ago, and there is still traces of it in Owen so we continue to treat him for that. He started chest PT today to try and loosen up anything so he can cough it out.
Last night Kara Sleeth came to visit. She is the mom of Andrew (link below) who lost his battle with this nasty cancer a couple of months ago. It was great to see her - thankyou for stopping by - we loved it!!! If you think I am strong - Kara is superwoman! She brought a goody-bag full of spiderman things for Owen - Thankyou!!! Although the nurses and I got hit with a few flying planes last night LOL! Andrew was also a big spiderman fan and was counting down to the movie. We know Andrew will be there with all of us at the movies - heck he probably got to see it already! She did tell me about a parent group that meets once a month and I know some of the moms from up here - so once things settle down (yeah I know I keep saying that) I would love to join in.
I did go home today. I surprised Tyler and picked him up from school. He was so cute... he was sitting on the bench on the playground ( in a Time out hmmmm) and I walked up and stood there. He just stared at me and didn't move like I was a dream. Then I said "HI!!" and he yelled 'Momma' and stood up on the bench and was in my arms!! He got to show me all the good stuff he does on the playground, quite the little climber now. When the whistle blew to go inside - he asked "bye bye - ME??" Yes Tyler you are coming with me. He took off running - a beeline for the school!!! We had to bring him back and make him walk in line... he was just a little anxious!
We picked up Jake at Papa Freds (thanks for the papa fred day - you know getting to go INSIDE McD's LOL) Jake, Tyler and I went to Reesee's for some miniature golf and icecream. Thanks Tom! The boys had a good time, Jake would have golfed all day, but Ty knew after the last hole it is ice cream time!!! Then back to our house, we played outside and then finally had to pack up. I took the boys to Aunt Shelly's and Uncle Petes to hang out until Mom got there - she was at the hospital with Owen and was waiting for me to return. Thankyou!!! The boys were soooo happy to go there and play with PJ which made it much easier for me to say good bye and no tears from them. So it was a great day and I really needed that break from the hospital ( I feel bad because I know Owen could use one too!) and some time with my other boys, especially Tyler he needed a mommy day. Thanks Mom for spending the day with Owen!!!
Owen continues to feel good which is really good. He read the whole Spiderman 3 Junior Novel today (11 chapters)! I told him we didn't need to see the movie on Friday then... yeah right... should have seen the look I got! So that is the goal to be out by friday - he must see the movie - OPENING day! My plan is to go the the drive in when we go to limit the germs. Obviously Owen needs some time to build up his system again and limit on germs is the goal!!! Plus more fresh air and exercise.
Heres to no fevers tonight!!!!!
Tuesday, May 1, 2007 1:30 PM CDT
We are still here. Owen was going to go home today but spiked a low grade fever of 38.1 (100.6). He also dropped in WBC from 3.0 to 1.8 overnight. So given his history and the changes in counts/ fever they want to keep him. There is something stirring around in there and here is the best place for him. The doc didn't want to send us home only to turn around in the middle of the night. They did stop the Vancomycin Antibiotic since he is no longer neutropenic (ANC under 500), and will switch to the antibiotic he was on for the lung infection. This is just in case it is that infection flaring back up although it is not showing yet.
He may need a blood transfusion while we are here - he is 7.6 now. Usually they transfuse at 8.0 but since we are here they are letting him go - he has such iron overload that they are holding off to see if he will go up on his own. His platelets also decreased to 57 and he needs to be 75 for the chemo tomorrow so that will most likely be postponed.
I feel the worst for my kids. Last night Tyler got very sad and tears running down his face when he realized Mom was talking to me on the phone - thus meaning no mommy home. Mom said he was very tired with all the outside air and was asleep within minutes but it just hits you how much this affects him. Owen was crying because he felt he is to blame that I am taken away from Jake and Tyler so much so he got very sad. Brooke and I explained how everyone cries when they are tired and Tyler would be ok and it was not his fault. He seemed to feel better when Mom called back to say after comforting Tyler he fell sound asleep.
Today Jake and Grandma came up for a quick visit. This may not have been a good idea either (which is why they did it without Tyler), as Jake left crying that he needed me and wanted me to come home.
It is so hard but I know to go home and have Owen spike would be hell - and we have been saying for days that something IS going on with Owen. So the sooner we can get to the bottom of this and fix it the sooner we can get home and stay.
Owen has been working with the tutor here and with me and catching back up on some school work. With as sick as he has been he has lost some ground. But hopefully we can get him back up to speed.
Update on Relay for Life - it is approaching fast (June1st):
If anyone is interested in joining our Team - I need names by May 16th to quarantee a T-shirt.
Luminaria Purchases ($5.00) - bags purchased in memory / honor of someone to be used in the Ceremony at 10pm, should also be purchased by May 16th. This will guarantee the persons name in the Power Point presentations of names. This year they are using glo sticks instead of candles (just in case the weather is bad- HOPEFULLY NOT). I also have the bags if you are interested in personally decorating them. Unfortunately they are here at the hospital with me - but eventually I will have them at Nucor - so feel free to pick them up.
I am looking into Owen doing a can/bottle drive - so I will keep you posted on this. He wants to do car wash but given our circumstances the can drive will be better - that way if he is unable to attend the drive can still go on.... I will keep you posted.
Please consider donating to this wonderful event. Owen and I are looking forward to it again this year. I have been off the mark with promoting it this year - things just not going our way - but we will get there!!!!
Thankyou for your continued support and prayers!!!
Monday, April 30, 2007 1:38 PM CDT
All is well. Owen's fever last night stayed at the 103 level for a couple hours before finally fadidng and remained at 100.6 though the night. He has not gone higher than 100.4 today. They did another X-Ray to make sure nothing was regrowing in his lungs, and it was clear. Nothing has shown in the cultures yet either.
Basically the doc thinks his body is just very weak and susceptible to everything and anything. He has been in treatment now for almost 4 years! His bones are weak (the pain he has), his muscles are weak, and his ability to tolerate the chemo is just very low. So anything we can do to start improving him physically (walks, outdoor air etc) the better, and limiting germ exposure.
As he said the tests show the leukemia has not returned - so we just need to get thorugh this last year of treatment. Being in the hospital, fevers etc. are managea ble - the alternative (leukemia) is not. So yes we will take these unexpected visits. Owen really has been feeling good in here - he is just MAD and MISERABLE. He has snapped out of it for now - I just started crying at how miserable he was and told him I didn't WANT to be here either, BUT I was and I was here for him and I WAS NOT the target for him.
So looks like at least another night here - want to watch him especially since he spiked last night so high. His WBC has actually come back up very nicely. It was .5 on Friday, 1.7 on Sunday and 3.0 today - so it looks great!
His platelets are at 63 and he needs them to be 75 for the Spinal Tap w/ Chemo insert that has to be repeated since they were unable to put the chemo in last friday. If his platelets are good this will be done on Wednesday. The doctor in not here on Friday so it has been moved up.
I guess thats it - I will keep you posted. Keep praying those fevers and bacteria stay away!!
Sunday, April 29, 2007 12:54 AM CDT
8PM update:
Owen spiked another fever at 3:30 (101.2). So antibiotics have been started. He slept early for about 2 hours, and then he has to have benedryl prior to Vancomycin so that put him right back asleep.
He just spiked another fever (103.2!!!!) Damn it what is going on???? He still feels pretty good. One thing I have noticed is that he seems to spike a fever when his legs start hurting. The resident thought that was coincidental. I don't know if he could have been spiking fevers last week when his pain was the worse as he was getting pain med (that has fever reducer) every two hours so how would you know? But last night when he spiked to 100.5 his legs had started hurting. And now today all three times his legs hurted his temperature spiked.
Sure hoping for some answers soon!
**********************************************
Owen has been admitted. He woke up with leg pain around 9:00 and when I touched him I knew he had a fever. Since he has low counts tha means an automatic trip to 7H. He went up to 101.7 but then started to come back down to 101.0 by the time we left. They did blood cultures but since his temp was now only 100.0 Dr. Souid decided not to start any antibiotics and just to watch him. He is coughing more today, just that little tickle cough again. On a good note - today is the best Owen has felt in days!! Once the leg pain went away he was feeling great and couldn't believe he had a fever and had to go to the hospital. He has fallen asleep now.
I will keep you all posted - keep those prayers and wishes coming - something is still causing issues!
Saturday, April 28, 2007 3:12 PM CDT
All is well. Owen had a restless night, so I had one as well. He seemed to toss and turn and didn't finally doze off for good until about 1. He woke up once feeling really nauseous, so I gave him a benedryl and that seemed to call him eventually and he dozed back off. At 7 he woke up in pain again - his legs were really huting again. He took a pain med and did fall back asleep again. He has been ok the rest of the day no pain and stomach has been okay. I feel like there is something inside him brewing and trying to get out and has just not surfaced yet.
He still has no counts, and is on house arrest basically. I will recheck his counts on Tuesday to see where he is at. If he is good then most likely his spinal tap will be scheduled for this friday. Although he spinal fluid was taken out last week no chemo was inserted due to low counts so I believe they are still going to do this.
Tyler had a birthday party today for Ben one of his classmates at Champions for Life - one of Tylers FAVORITE spots! He knows the routine so well. As soon as it was done in the gym part (jumping on trampolines, a blow up slide, a running trampoline and mat tumbling) he was off and running to the party room - in hopes of that cake!!! He did have to sit through the lunch and present opening - he kept looking at me and signing cake and ice cream - and I had to keep telling him 'wait'. Finally it came and he was in his glory and dusted it off in no time.
Today is a quiet day at home which is good. I am still so exhausted and I know it is mental exhaustion. It has been a good three weeks of a lot of stress. Hopefully we can put most of it behind us. Our lives just still seem so fragile.
But today is a good day and I will be happy for that!
Have a good day and thankyou for all your well wishes - keep them coming we can use everybit of them!
Friday, April 27, 2007 11:38 AM CDT
Owen is Clear!!!!!!!
What a HUGE relief. Dr. Cherrick said there was only a few cells due to his low counts but what was there, appeared clear! It will still be sent for the detail analysis but for today we are celebrating! Don't know why his counts crashed or the fevers - could still be fighting something - but looks like it is NOT the leukemia. I am off to lay down as I am exhausted - I fell asleep on the way home - I am just drained emotionally. Owen seems in good spirits today his legs are hurting a little bit right now but otherwise he looks much better today than he did yesterday. He was so pale yesterday and dark circles under his eyes. I think although we never told him anything - he knew and was worried as well. Kind of hard to hide the panic in all of our faces even though we did our best.
Thankyou all for all your prayers - they worked!!!!
Thursday, April 26, 2007 3:04 PM CDT
I don't know what to say... the fear is Owen has relapsed. I took him to the doc's today as he was running low grade fevers still this morning. He is very tired today. So the combination of the bone pain, low grade fevers and severe drop in counts points to possible relapse. He was given platelets today so he would be strong enough tomorrow to have the bone marrow aspiration done. I am just numb all over and can't stop crying. I know there is still hope that this is not a relapse but I am so scared as those were my inner thoughts and to have Dr. Cherrick confirm this scares the hell out of me.
Please no phone calls tonight - I can't handle talking about it again and again. I am just trying to make it to tomorrow...
Please keep Owen in your prayers... a second relapse is not a good prognosis....
Wednesday, April 25, 2007 9:12 PM CDT
It was a good/ bad / good day - a little of everything so I'll start at the beginning.
Owen actually slept through the night from 10-6. He woke up at 6 in pain, so I gave him a pain med and about a 1/2 hour later he was feeling good and very chatty. I did a blood draw just to check if anything was going on - he was due on thursday but with everything going on I did it early. I called about 9:30 and things were still good. He came downstairs and was still feeling pretty good. He did have another pain medicine at 11 but that was still 5 hours not the 2 hours he had been going at.
I recieved Jakes blood work. His Red Blood Count decreased more, but his hemoglobin and hemacrit were up so looks like things are improving. The ESR rate was 17 so only a little abnormal. I talked to Dr. Bright and she thought that he was looking better - to keep him on the iron and it may take up to 6 weeks to see total improvement. If I hadn't heard on the MRI by tomorrow morning she would call.
I also got Owens blood work. His was not so good. He had dropped dramatically! His WBC was .2 and neutrophils only 5 which gives him an ANC of 10 - basically nothing!!! He was normal a week ago. Joanne from 5C called to make sure we stopped giving him Motrin as he can not have that with low counts. She was shocked at the drop as well. I asked if that meant he was definately fighting something - between the pain and now the drop. She said it appeared that way - usually chemo will cause the neutrophils to drop and an infection will cause the WBC to drop - but he hasn't had chemo for 11 days now and the chemo he recieved should not drop counts! So we are at a loss. So a fever will mean a trip to the hospital inpatient. Damn - just when he started to feel a little better! He just went upstairs when I arrived home at 3:30 and wanted more pain medicine - he was just beginning to spike.
Dr. Palomino called about the MRI. All is CLEAR!!! He has a small Bakers Cyst on his left leg (different leg than the pain). Many people have these, it is basically a build up of fluid. He may or may not ever have any issues with it. On his right leg there was some soft tissue in his knee consistent with a bruising and given Jakes active life style not unusual. The doc had a couple of doctors review and they all agree everything is fine. If after a couple of months we still have concerns we will start the blood work and MRI stuff all over again, but for now we think all is fine with him other than being slightly anemic!! Yeah - what a HUGE relief!
I left for the Relay for Life meeting at 7:00 - I'll update on that tomorrow. After I stopped in at Curleys for our Golf meeting. I had just got there when the phone rand - it was Owen - he had 100.7 temperature. Off to home - he was now 100.9 and not feeling good. I packed our hospital bag and then Kim and I just chatted with Owen. His temperature started coming down. I felt safe letting Kim go at 10 - his fever has been staying stable at 100.1, 100.2 So hoping he will continue to stay stable in the night, he seems to be feeling much better right now and is in a good mood. He says he is doing his best NOT to go to the hospital.
I just wish I knew what is going on!!! Tomorrow morning is his last antibiotic. That is all I can think of that that is still helping to fight off whatever is brewing. When will he catch a break?!
Hoping things stay calm... have a good night.
Tuesday, April 24, 2007 8:29 PM CDT
Owen had a so-so day. Last night it got really bad again - he got crying in pain so hard - I was crying just wishing I could take it away. I think once the every two hours started to settle in he got better. But he did wake up shortly before the two hours with the pain starting again but I think it helped.
Today he seemed to stay pretty good - we kept on the every two hours with meds. He only spiked really bad this afternoon and then again tonight about a 1/2 hour ago. He has settled back in again. I just don't know. I told him we might need to go to the hospital if it continued and he really started to cry - he doesn't want to go back - he justs wants the pain to go away!! We'll see how he does through the night, but I might take him in to be seen tomorrow if this continues.. I don't think we can wait until Friday.
We did manage to do some science homework tonight, so that was a plus.. he has gone so long with no work and I worry about that - but I guess that is the least of my worries .. him returning to good health comes first. We watched The Night at the Museum tonight and that seemed to keep Owen's mind occupied for most of it and he forgot his pain.. but near the end I could see him getting restless and it coming on.
Jake was so cute last night. We had told him that the MRI machine was like a rocket ship and he was going on it. So last night he asked me Why when he was using his gum mask to go on the rocket I started to do this: he shook his finger back and forth ( I was wiggly )! No wonder he looked nervous! I laughed - I said cause you were getting sleepy. "Oh cause my eyes were like this" and he half closed them. Yeah I guess so...
Kim took Jake to FOSPA tonight for me. Thankyou Kim!! I didn't want to leave Owen and I hate to see Jake keep missing. Tomorrow is the monthly Relay for Life meeting - looks like my co-captain is out of commission so I will run to that real quick if Owen is ok for an hour with Kim.
THANKYOU - the donations are coming in and we appreciate them. Only four more weeks to go! Need to get Owen healthy enough to get there!!!
He is crying again - gotta run...
Monday, April 23, 2007 4:54 PM CDT
Good/ Bad day. Jake did great, Owen hurt all day.
Jake and I were on the road at 6:30 - he wasn't too happy about being whisked out the door then but he didn't fall back asleep! We arrived checked in and then had to sit around an hour before we were called in for the initial consult. They said they were behind and we had a 1/2 hour or more until he would go in so we could go for a walk. I asked if they could do blood work while he was asleep and they said no. So we headed to the lab. Jake was crying though - he didn't want a needle!!! I told him he could get a dinosaur if he did the needle and that didn't matter. I said how abut a BIG dinosaur? "no - just a little dinosaur and no needeles!" So we wandered a bit and then went back to the waiting room. We didn't go in until almost 10. I was able to convince them to do the blood work - he has had too many needles and is getting scared by them. He had a bubblegum flavored mask and thought that was cool. We went into the room and shortly after breathing his mask his eyes started to get sleepy but also had that look of panic in them as he knew something wasn't right. Poor thing - I gave him a big kiss and was scooted out of the room. It was 2 hours later before they came to get me! I was getting very nervous! He was still asleep and after some gentle nudges - I said 'Jake -you need to wake up so we can go to Jakies house' His eyes flew open - "NO! I want a little dinosaur and NO needles!" Doesn't forget a thing! We showed him how he got the needle while he slept so it didn't hurt so that made him extra happy! I ran into work to see my Boss, and then went through my pile of mail from the last week. Back out the door as I needed to give Owen his antibiotic at 3.
Owen had a VERY bad night. He just hurt so bad. He woke up about every hour with tears just streaming down his face over the pain. I would get him calmed down and rub his legs and he would doze back off - only to wake again crying and asking if he could have pain medicine yet. I did give him another at 3 hours (vs. 4hours) because he just hurt so bad. He woke up the same this morning after we had left and Mom had to sit and comfort him all day. He would doze off here and there. I called the doctor. First the nurse got all the info from me and said she would talk to the doctor. When she called me later we discussed 'possibly' being the Vincristine he received but that was 10 ago. Generally it would be 5-6 days after and this was his third dose and shouldn't have that effect. We thought maybe his body has just had it and any pain is just too much now with everything he has been through. He is getting a spinal tap on Friday so he will also have a bone marrow aspiration to rule out anything with the pain being due to Leukemia. Until then it is Tylenol alternated with Motrin every tow hours to minimize his pain getting to an intolerable level. I will also do hot packs on is legs to see if that helps. We have worked out a good method for communication. He is upstairs in our bedroom and it is so hard to hear him yell, he ends up so upset because I can't hear him. So we are using his walkie-talkies!!! Much easier!!
Poot thing - he is just never getting a break!!! When does the 'easy' phase start??? All of us sure would love to see it.
Have a good night - it will be early for me with hardly any sleep last night!
Sunday, April 22, 2007 8:17 PM CDT
Owen had a rough night. He couldn't sleep, kept waking up aching all over. It continued pretty much all day and he took pain killers about every 5 hours. Not sure if it from the Vincristine he had a week ago, as it is not 'suppose' to cause the pain since this was his third dose of it. But he was definately hurting. He finally got up at 5am and stayed up. I was up at 6:30 to give him his antibiotic. He did go back to bed at 8 and slept about an hour.
We headed out later morning to the baptism. It was a very nice ceremony, very old tradition. Alexis did great for the long ceremony. After we headed to the Springside for Brunch were we all ate too much - even Owen said he was full when we left which doesn't happen too often with the steroids! Although he is done it will take some time to lose effect and it is only for a week he is off then he will get 5 day pulses every 4 weeks. He was getting very sleepy at the Springside and we headed home. He laid down for a bit but didn't really fall asleep until late in the afternoon.
Tyler, Jake and I spent another full afternoon outside. Boys I sure could get use to this it has just been an awesome three days of weather!
Ken and Dan stopped by in the evening to say Hi after their vacation. So that sure cheered Owen up. He forgot about his pain and just had fun for a bit. Thanks Dan!!!
Tomorrow is Jakes MRI at 9am. We have to be there at 7:30 due to him having to be sedated. I probably will not know any results tomorrow. Depending on how he is feeling when he wakes up I might repeat his blood work tomorrow, just because I feel he is paler and his red blood count might be continueing to drop. It will be nice to find an answer to what is going on with him. He has not really complained about his leg alot lately until tonight. But he has been doing alot of running and playing lately.
Have a good night!
Saturday, April 21, 2007 7:18 PM CDT
Another great day! Owen and Chris went fishing with Papa W. Forgot how bright that sun can be on the lake and Chris had no sun screen - so Owen has very red cheeks. Ouch - have to be much more careful with him!
Tyler, Jake and I spent the day enjoying the outdoors. We played racketball, baseball, pirate.. and lots more it was none stop - trying to fit the whole summer in. I drew a road on the driveway complete with store, gas station, beach and of course they each had their own chalk house with garage! They had a blast!
Aunt Lori, Uncle Dave and Natasha came over this afternoon and the boys just loved her & she them - although she wanted to do everything they did which is not always good!!LOL Jake tried to scare her with many dinosaurs and the snow monster but she just loved everything. It was so good to spend some time with them and we are looking forward to lots more time with them when we rescheduled our vacation.
Tomorrow is Alexis Baptism (Chris' sister's new baby girl). So that should be a fun day too!
Owen is holding his own - I think all the fresh air did him alot of good today. Still not sure of the plan for next week. He gets tired and I know his system is still recovering so I think I will keep him home a couple days and wait till I see his stamina increases, or try 1/2 days. Each day I am evaluating how much stronger he gets... he has done great but I don't want him to crash or get in with alot of germs. But hopefully with the nice weather everyone will start feeling better and there will be less germs and illnesses to worry about.
We are off to bed to watch a movie and relax - looks like a quiet night after such a busy day.
Have a good night!
Friday, April 20, 2007 6:57 PM CDT
All is well. It is so hard to believe that a week ago we were fearing for Owens life and now he is home and almost back to normal! Yesterday was a quiet day. I sure felt it, I think my body finally relaxed - I was just wiped out. Jake wanted to play tag - but after a few rounds I had to convince him a board game & painting worked much better!
I went to Grandma Kotzer's wake last night. My very good friend Lori's grandma. So Lori came up from Florida. God bless you Grandma, I enjoyed knowing you for many years, especially with Lori and I growing up!
I guess things worked out - it was Lori and Dave we were going to visit in Florida! I came home and wanted to go straight to bed - when I realized I had to give Owen's antibiotic at 10:30! So I struggled to stay awake - thank goodness it only runs for 20 minutes!
Back up at 6:30 - to start the antibiotic again. I felt good though -I think your own bed does that for you!
Today was an awesome day and a much needed one! I am glad I took it off, and with the weekend to follow it should recharge my batteries! Papa Fred came and took Jake and Tyler to McDonalds for lunch and play time. That gave Owen and I time to go grocery shopping. Owen took his own cart - a.k.a steroid shopping! Today is his last day - but it will take a bit for the effects to wear off. Owen was tired after that, his first real outing and alot of walking for him.
He had asked to have his friend Sean over today for a little bit and I agreed he definately needed some friend time! So he and Sean played some video games and then just watched a movie. Thankyou Sean for being a great friend!
I puttered outside doing some spring clean up - was today beautiful or what!!! Tyler and Jake arrived home and we pretty much spent the rest of the day outside playing. They rode their cars, played pirate, swang, played ball with these oversized rackets. Jake played in the mud for awhile and Ty did go in to watch the boys on their video games a bit. Jake can't figure out why I didn't want to play in the mud - it was fun!
After dinner we went back out and by now pretty much all of the foot of snow had melted - there was still a layer this morning. Jake was like - "MOM! The snow is almost gone! WhoHoo - Summer IS coming!" Oh I sure hope so. This whole weekend is suppose to be close to 70, and I am loving it!
Tomorrow, Lori, Dave and Natasha (15 months and adorable) will be coming over for a bit. The boys are so excited - and Natasha loves all boys already! So looking forward to spending some time with them.
Boys have had their tubs and looks like it will be an early night after all the fresh air today.
Have a good night!
Thursday, April 19, 2007 1:49 PM CDT
We are home!!! It feels so good. I think everything has caught up to me as I am exhausted!
The excitement of the morning and being released has caught up to Owen as well. He stayed up for a bit when we got home - to eat mostly! He is now laying down and about to fall asleep. I have started his afternoon antibiotic - it runs for 20 minutes, but I have to do 3 a day - every 8 hours.
So going to enjoy home life (fighting siblings and all!)
Have a good night.
Wednesday, April 18, 2007 6:55 PM CDT
Owen continues on the road to recovery. He had the oximeter removed from his finger today that continually monitored his oxygen stats. Since he has stayed consistant at 99-100 since the oxygen was turned off.
So all looks good for being released tomorrow!!!! They will do another X-Ray in the morning to make sure he is okay to leave. He will go home on 10 days of IV antibiotic. This will have to be run every 8 hours, for 1/2 hour. So I have to decide the times. I think 7,3,11 will work the best.
Grandma Pat, Daddy, Tyler and Jake were all here to visit today. Tyler and Jake had a blast racing cars in the hallway, painting, of course dinosaurs. Tyler took a break with Owen when he was tired to watch a sponge bob movie. It was a good day seeing my boys and they spent a good 3 hours here so they were fine when it was time to leave. We had visions of Jake screaming the whole way out again!!! But Daddy was here in case of the melt down, but it went well.
Owen received Pentanimine (sp?) today by IV. This will replace the Dapsone pill he takes daily to prevent pnuemonia. Obviously that did not work well for Owen. He use to do the breathing treatment Pentanimine once a month but did not like it, so we switched to Dapsone. So we will try the IV once a month and see it that works for him. Otherwise he will have to go back to the breathing treatment.
We DO have a room-mate. There is another boy who is MRSA positive so they can room together. So gone is our suite - and gone is my bed to sleep in... I am back to the parent chair/bed. Thats ok - it is for ONE night, and we are hoping for our LAST over night on 7H.
Owen has a headache now and an upset stomach but these are manageable!!!
Have a good night and I hope to update from Home tomorrow!
Tuesday, April 17, 2007 8:43 AM CDT
Evening:
Owen had a good day. Owen did music therapy for a little bit and seemed to enjoy it. Daddy, Owen and I played Clue for a bit but then he got tired - he had been awake really all day. He took a short nap and then we went out to do some laps in the hall. Just as we reached the end of the hall we heard a familiar voice and turned to find the Walawenders! So we headed back to the room and Owen was thrilled to play some DS with Samantha - they had gone to our house to retrieve Owens. Dennis, Pam and I played Pitch - so it was a very nice visit! Thankyou so much!
Owen took a second shower. His back is bothering him and he wanted some heat on it. It is most likely from being in bed so much so hence the push to walk the halls. After the shower I ran out to pick up Outback as Owen was craving Ribs. He ate and was ready for bed. But it was a very good day and as I said he spent most of the day awake. So everyday is looking better.
Tomorrow Jake and Tyler will come visit. Owen says he misses them! Not sure how long that will last.....
Have a good night!!
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Morning:
Still moving along and getting better. Oxygen was turned all the way off this morning and Owen is maintaining a Stat of 99, so that is good. We were up early at 6am to have another chest X-Ray done. Doctor said looks like it is clearing up nicely and the antibiotic seems to be working. So as long as Owen continues in this direction, they will repeat the X-Ray on Thursday and if there is continual improvement he may be released later Thursday!
Owen's task for the day is to take some mini walks in the hall. So far he has only been out of bed for the bathroom - or to bath. Nurse just came in and gave Owen more good news - she can remove his arm IV!!! They have been leaving it in, just in case...
So we continue to be very happy with his improvements and feel blessed that Owen has once again proven what a Super Hero he is!
Monday, April 16, 2007 10:28 AM CDT
Evening Update:
Things continue to move along. Owen is still on oxygen, but it is very low (.5 liters) so next step is to turn it off, most likely tomorrow. Owen took many mini naps today but also had alot of awake time. His legs are bothering him again - but he did get the chemo vincristine on Saturday. It isn't suppose to bother him anymore but it is.
The bacteria in his lungs has been identified. He actually had three different ones:
Haemophilus influenzae
Moraxella Catarrhalis
Streptococcus pneumoniae
Whew - say those 3 times fast! Basically they are bacteria that affect the lungs like pneumonia and can be very dangerous for Owen - as we obviously witnesses! The medicines they used to fight the suspected PCP pneumonia were also very good for these and thus the quick shut down of the bacteria. So how do you get this?
Person-to-person contact. Germs spread by coughing, sneezing, touching germ infested areas. Anyone could be a carrier and not really have the symptoms. So he did not necessarily get it from school, he is in public areas, Tyler and Jake carry alot of germs I am sure. I asked Dr. Cherrick what we should do - if he should be put back in a plastic bubble? She did not think so, school was important when he was up to it, and to keep him out wouldd not let him start being 'normal' and this is very important for him. She see's how concerned he is over every bump and pain he has and he needs to start relaxing and to throw him in a bubble that won't necessarily protect him from his own brothers won't help.
I am going to look for counseling - and I think my wonderful friend Pam has already done the leg work on this - to find another close to home so he can go several days a week.
I have also purchased an Oximeter so I can monitor his oxygen stats at home. Other than the cough and the fever at night he did not really have symptoms - but his stats were low. So I am now officially set up at home with thermometer, blood pressure and oximeter. Think I got the main areas covered!
He is just waking up and wants the pizza we ordered for dinner.
So got to run - emotions still run high here!
Have a good night... things keep getting better everyday.
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Morning Update:
All is going well - Owen continues to make improvements and faster than the doctors expected! He did end up having stomach aches last night (probably due to the amount he ate!) and hat zofran and benedryl.
He was up at 8 this morning and ready to eat again. He is now getting out of bed to use the urinal at bedside - before he was too weak to stand, which was quite the ordeal to go to the bathroom in bed.
He wants to take another shower today and put some clothes on - he is still in a hospital gown. He is back asleep now - but staying awake and actually talking now for a few hours at a time.
Dr. Sadowicz was in and said they will take another X-Ray tomorrow to make sure his lungs are clear. He will remain on antibiotics for another 10 days, partially here and then the remainder at home. If he continues to improve at the rate he is - we may be going home later this week! I am in NO rush - I want to go when Owen is really ready - I don't want to ever go through that again.
I can't believe the weather!!! A major snowstorm hit - and this is what - oh yeah - APRIL!!!! Chris will come up later if the snow ever stops, but I said he is doing fine - no need to push the travel. We got probably 6-8 inches last night!
I will update later on his day!
PS- for Lori - tried to call you back - if you see this call the room!
Sunday, April 15, 2007 9:04 AM CDT
Happy Birthday Grandma Bonnie!!!!
7PM update:
Quiet day - Owen slept most of the day. I enjoyed a few hours at home with Tyler and Jake. We put in some music and had a big dance-a-thon, they love it, especially the Cha-Cha-Cha. They were not upset when I said it was time to go... they were going to Papa Fred's and Grandma Leas. Don't think I will ever hear a protest there!!
When I returned Owen was just getting out of the tub. Brooke made a bargain with him, she would remove his foot IV if he would take a 'real' bath. The nurses give him a sponge bath daily in ICU. It was great to see him up and walking, although he needed alot of support - he is very weak and unstable on his feet.
He asked for something to eat - so I checked if it was okay to eat yet - he was allowed clear liquids this morning. Absolutely was the answer!!! So Owen went on a roll... peanut butter and jelly sandwich, 2 bowls of Corn pops, 1/2 ham and cheese omelette and 1/2 english muffin! He is back to dozing on and off now. But he has been pretty much awake for almost 3 hours!!
All your good wishes and prayers are working because he is coming along wonderfully. Tomorrow we will work on several small walks to get his lungs working. He is coughing a bit, but they want him to cough and get things moving now in his lungs
Thankyou Dad and Leanne for helping so much with Tyler and Jake!!! Thankyou Grandma Pat for helping with Owen! I know I don't always say it, but our family is awesome and we love having the support we do!
Hoping for a quiet night...
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Baby steps... but things are getting better.
Owen had the breathing tube and stomach tube removed around 2pm yesterday and he tolerated it well. The nurse had to bring the emergency kits in and set up in case there was issues - she said it is to 'ward off the evil spirits' - it worked though and he had no problems. Later they weaned his oxygen from 40 percent to 30 percent and then last night changed from the oxygen mask to the nose prongs which made Owen happy. He is half awake - and will nod and answer questions. He will say a couple of words here and there but mostly still sleeps.
He reached out for my hand last night - squeezed it and said "I love you mommy' with a half smile - oh my heart melted. He even tried to open his eyes a bit but they are very sensitive. Then he said 'I thought I told you I never wanted to come down here again' (to the ICU) - yeah believe me none of us wanted that!!!
I headed up to 7H to sleep around 10:30, I was going to sleep in the bed tonight since he was doing much better and I was still a hop away if I was needed. I think I fell asleep as soon as my head hit the pillow.
I was back downstairs this morning and Owens oxygen rate has been reduced to 10 percent - so doing great!! This morning his catheter was also removed.
The doctor came in and said that he didn't know how Owen did it - he was a VERY sick boy and turned around in miraculus time. He must be very lucky - I told him it was all his super powers! He gave the OK to go back to 7H. He said although he has the most respect for the ICU nurses the 7H nurses are just as great! I said I had total faith in the 7H nurses - as they have been tested by Owen many times and are just awesome. I think Owen feels better too about returning to 7H. (Especially since Brooke is on today!)
Owen returned to 7H - and is settled in now. Grandma is here and I am going to return home to get some more clothes and see Tyler and Jake. Daddy will come up when I get home and then we will swap again later this afternoon. Owen will be here on 7H for a while - he is very weak - most likely about a week the ICU doctor said - depending on Owen and how well he tolerates the transition to getting up and moving and building his lungs back up. The cause is still unknown since the PCP pneumonia was negative and the source may never be known - sounds familiar - owen is infamous for this! But the fact is he was very sick and is getting better so that is all good.
I will update later! Phone number to room is: 464-3683
Saturday, April 14, 2007 9:58 AM CDT
I am unable to use my cell in the room and it gets very poor reception in the family room. I will try to return calls as I can.
'Friday the 13th' - will always be a nightmare....
There is nothing more terrifying than walking into a room and seeing your child with a brathing tube and totally paralyzed. Owen's eyes were partially open and he has a tube to remove gases/ fluid from his stomach. The breathing tube in his mouth and a machine breathing for him. I cried at the site of him and them to squeeze his hand and recieve no response was awful. I felt like someone just ripped my insides out.
It was a long night but Owen remained stable - only spiked a fever once. They had done an X-ray late yesterday and they could see the cloud over his lungs indicating the PCP pneumonia. The lab test came back negative for this - but they are still suspecting it. This morning his X-ray shows much clearer and the doctor is thrilled with the turn around - it just does not happen that fast. I had pleaded with the resident last night to give me a 'ball-park' number for how low he would remain under sedation and being paralyzed (he is basically in a induced coma). I said a few days - a week - a month -?? He finally said most likely 48 hours. However with the X-ray looking clearer and it appears he is attempting to breath on his own they will start weaning him from the ventilator today. First they have to let the sedation wear off. Owen is slowly responding with little nods of the head here and there - it feels so GOOD to see a response. Brooke (his wife) came to visit this morning and he acknowledged when she told him she would be back later and that he knew who she was!
So as he tolerates waking up - the ventilator will slowly be wened and IF all goes well the tube will eventually be extracted. Baby steps... I am in no hurry ... I don't want to see him under stress again and have to back up .. it was very scary yesterday... the rush of doctors and nurses in and out of the room, ending up in ICU - I did not want to relive the ICU thing ever again...
I am feeling SOOOO guilty too since I just read Owen the riot act - that he was healthy and needed to stop worrying so much and enjoy being a little kid again. Unfortunatley this will mean Florida is cancelled - everytime we plan something - a mini trip - disaster strikes. Last time is was our vacation to Marine Land to meet my cousins. Some day we will resume this trip. I know Owen will be heart broken. I doubt we will even be out of the hospital by then and even if we are - I am certainly not ready to jump on a germ infested plane with him! Or to be any where far away from University.
Some day we will discover what is normal.....
Jakes MRI is scheduled for April 23rd.
I will keep you posted - but for now there has been baby steps forward. Thankyou for all your thoughts and prayers we need every bit of them!!
Friday, April 13, 2007 4:28 PM CDT
I wanted to quickly update you all. Owen has been admitted and is in ICU right now.
Most likely he has pneumonia. His xray was clear and he sounds clear but they are thinking it is the pneumocystis Pneumonia(PCP) which tends to not show until it is really bad. So a lung wash was performed under sedation. They had to put a breathing tube in his throat due to how labored his breathing had become and they did not want him to get anymore distressed under surgery. He will remain sedated until his breathing has stabalized again, as they don't want to remove the tube and have to replace it.
The lab should have the results soon on whether it is this or not and then he can be treated quickly. Dr. Cherrick said he will get alot worse before he gets better - but will turn around quickly.
We have not been allowed in ICU yet - as they were setting up and now the doctors are rounding, so you are not allowed in. So I have not seen my little boy with the tube in yet and am trying to prepare myself. At least Owen is asleep and I will not scare him if I do not handle it well...
I will update when I can
Thursday, April 12, 2007 5:25 AM CDT
Thursday Night:
Owen did not go to school today. He has been hovering up and down between 101 and 99.6 all day. He is coughing alot and just not feeling well. I am afraid of a possible line infection - I was unable to draw blood from his port this morning. I had trouble on Tuesday getting it to start but eventually it did. Today I was unable too - I even tried 2 other needles when the one in him from tuesday didn't work hoping it was a bad needle. No this could mean that he has a clot - as I am able to flush it with saline but no blood will draw back. His WBC dropped from 6.9 on tuesday to 2.3 today so he is definately fighting something. Hopefully tomorrow we will get some answers. He is at 8.0 for blood - so that is borderline. He looks so pale though and is tired so I think he should get the blood. Especially with us going away next week I don't want to get to Florida and need blood! Hopefully tomorrow we will get some answers.
Jake looks paler to me by the day. He is also taking a nap everyday so he is definately feeling having a low RBC. No word on the MRI yet. I called the doctor today and they have not heard back from the Hospital yet - if they don't hear by tomorrow they will call again. I had gotten the vitamins with iron - which Jake took fine the first night, but now he only wants his gummy not the hard vitamin. Tonight I had to run to Wegmans as I forgot to pick up Owens presciption for nummy cream and he will need it for the two shots in his leg and for accessing his port tomorrow. So I picked up some iron drops. Jake took them well tonight so hopefully that will continue.
Have a good night!
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Owen went to school again. He did go to the nurse and laid down for a short nap for a bit and then went back to the science fair going on. He came home after school - he was suppose to go to the Walawenders but he said he wasn't feeling good and wanted to come home. He is coughing quite a bit again.
I had a dinner for Nucor due to the training going on this week. There are about 50 people here from all the Nucor mills, so it was nice getting to socialize with many of the people that are my co-workers across the country. I got home and Owen was not feeling well and just coughing constantly. I gave him some cough medicine. He felt warm and sure enough he was 101.8 He does have an immune system so I gave him Tylenol for the fever. He has no fever this morning but had a very restless night due to the cough. I am not sure if it is the virus he had before spiking back up again or what - but looks like he will be home today. Arghhhh!!!! Just can't get a break - we finally get him back into school and he gets sick. I will take blood this morning to see where he is at so we know tomorrow if he needs blood or just chemo.
Tyler seems to be doing better. It doesn't take long once he is on the antibiotic, so he should return to school today.
Tuesday, April 10, 2007 8:41 PM CDT
Owen made it to school today - Yeah!!! Wow that first push back is soooo hard. He did say that he did get bombarded with alot of questions about his cancer and why he has been out and he didn't like it. I tried to explain it was out of concern his friends ask. The more he is back in school and longer this will go away and eventually they will stop asking. But he needs to be there regularly for it not to bring questions on. He did go to the nurse and fell asleep for a bit. He is still very tired - but I will take being in school and a little catnap at the nurse. He opted to go to art and finish a project instead of going outside and that is probably more due to knowing he can't run and play like the other kids and that is ok. He went to the Walawenders after school because Mom wasn't home yet ( I'll get to that...) and I picked him up there. They worked on the spelling bee. I hope he doesn't get discouraged this year if he doesn't do well because he really has not been practicing - heck it is a chore to get the school work in lately. But he is an awesome speller so he just needs to get through 'hearing' what the word is correctly this year!
Tyler's school called this morning and Tyler's nose was starting to gush and he was coughing. I am in training tuesday - thursday and am trying to stay at work if I can.. so I called Mom and she was off to get him. I called the doctor to see if they would give me an antibiotic over the phone. With Tyler's history they just should... he does not get over these without it. No go... so off Mom went with Tyler and Jake to the doctor. Tyler has an ear infection and most likely a sinus infection brewing but with his nose just starting it is hard to tell, but the antibiotic will cover it either way. The doctor gave a refill too - Mom did a good job of pleading Tylers general need for 2 antibiotics!! So that is why she was late getting back for Owen getting home.
So THANKYOU Mom as always you are always there to pick up the pieces and help me!!! Thankyou Pam for taking Owen back to your house! I appreciate everybodies help!
Jake had FOSPA tonight so me and him had a fun night together. One of the boys in the class will be in Multi-Age with Jake next year so we are going to try and have some play-dates together so they can get to know each other better. But even by the end of FOSPA -after officially meeting - Jake told me Thomas was his good friend! Too cute. Tonight the Police Dogs were at FOSPA so that was a fun night. Jake loved the dogs and loved watching them go after their toys - especially when the one officier was able to twirl the dog in the air when he had such a hard grip on his toy!
It was funny but tonight Owen said to me "Mom - Jake looks really pale don't you think?" I asked him why he would ask that - had he heard us talking. I could tell by the look of puzzlement that he had no idea - so I told him Jake was a little low on his blood just like Owen and so he was pale. "Wow are we going to go get blood together now??" No - Jake is not that low, but we'll keep an eye on him. How amazing that he has become so intuned to these things!
So hopefully more days at school for Owen. He was in the best mood tonight and even did some old school work he still had here from when he went home last week. This was on top of his homework from today - and no complaints!
Oh I sure hope we are over this hump with him!!! I really got on his case last night but maybe that was why he had the good day today. He started getting hysterical over a red dot and piece of dead skin on his foot. They he got all miserable because I took too long putting Jake to bed and he wanted Hot Cocoa. I lit into him and told him enough was enough. He was not sick, they chemo wasn't make him sick anymore. He needed to start pushing himself and living again. He felt sick most of the time because of making him self feel worse than it is - that he was convincing himself that he was not feeling good. He needed to get up - get to school - start enjoying his friends - enjoying after school activities - every thing - start being a kid again!!! He started crying and said he was just scared and that he didn't want his cancer to come back again and we didn't know if it would stay away for good and he was scared. I told him we were ALL scared, but there is NO guarantees. He could get sick again, I could get sick, Tyler could get sick, anyone could get sick. I could get hit by a truck on the way to work! There are so many things that CAN happen - so many WHAT IF's but he needed to enjoy TODAY. If he woke up and felt good - he needed to enjoy that day to the fullest and not worry about tomorrow or the next day. Life is about TODAY. So not sure if that 'PEP' talk worked but TODAY was a good day. :-)
Have a good night!!!
Monday, April 9, 2007 5:27 PM CDT
I am breathing again!!! I faxed the results to Dr. Cherrick (onocologist) and to Dr. Bright (pediatrician). Dr. Cherrick called me and said she was NOT concerned with it being Leukemia or any Cancer!!!!!!!!! It appearred to her that it was more an infection or inflammation within Jacob and the MRI should help point to what. I was so releived these were the words I needed to hear. I then talked to Dr. Bright. She wants Jake on a multi-vitamin with iron due to being anemic. Which would explain being tired and looking so pecid. He currently takes a regular one so I needed to get one with the iron - but at least he is use to taking it already. She wanted to get the labs off to an onocologist to be reviewed. I told her I already had sent them to Owens doctor - she started to laugh - I love mothers who are on top of things! I told her - I was a wreck all weekend and needed to have some answers! The MRI has not been scheduled yet - they have to coordinate with the hospital since he needs sedation. She said they could do it right away if I thought he could sit for small sessions. But I know Jake - they only time he is still is when he is sound asleep!!! So I am feeling so much better... still don't have any answers... but looks like my biggest concern is gone. Like I said I am breathing again!!!!
Owen did not go to school today. He had a decent day yesterday. We went to Brunch and then stopped at Aunt Shelly's and Uncle Petes on the way home. He spent most of the day on the couch resting. He looked ver tired with dark circles under his eyes - but he was happy and content to be with everyone. I let him sleep in today and thought Mom would take him when he woke up. He slept all morning - when Mom left to go get Jake a little after 11 he was just starting to wake up. He called me at 11:20 hysterical that Grandma was gone and he couldn't even move he was in so much pain. I tried to calm him down and said Grandma would be home in 10 minutes. He was just sobbing that he hurt and I didn't even care! Insert knife and twist!!! I was on my way... He was totally hysterical. He said his legs hurt so bad he couldn't move. His blood pressure was normal, his temp was normal. I gave him pain medicine. I did a blood draw - I figured I was as well check it due to how pale he is. About 40 minutes later he was calm and talking away to me - the medicine had kicked in. He gets himslef so worked up so easily now. He was fine the rest of the day until mom mentioned that Miss Tracey would be by for tutoring. I just don't get it. He fights the return to school and I have to believe he is very nervous of being odd man out - he hasn't been there - will he fit in - seeing everyone for the first time again and trying not to deal with he has been sick and out. I know I 'hid' from many people at Wegmans on Saturday because I didn't want to deal or talk about my fears with Jake. I have told Owen that our trip to Florida may have to be cancelled - it is only a week away and he is not feeling good. That put the look of fear in him and hopefully some inspiration. It is so hard to tell how much is real any more.
His blood work came back and his hemoglobin is actually up from 8.7 to 9.0 Not sure why he is looking so pale. He does have his cough back and I thought that could be from being low on blood. Perhaps he is getting some virus again. WHEN is winter and these illnesses going away??? Isn't is suppose to be spring - not snowing!!
I guess one thing at a time - I will take the uplifting news about Jake.
Sunday, April 8, 2007 5:50 AM CDT
Yesterday was a long day. I felt numb all day and cried many times - and would strike out at my husband for nothing. Thankfully he did not take it personally and would give me a hug and tell me he knew I was stressed - we all are but he WAS not the target. I am juts glad he didn't lash back at me as I probably would have broke! I feel so fragile. I hold onto the fact that no results have said anything positive - that there are just abnormal test results. With no true diagnosis there is room for it to be many things - room for it to be nothing.
The doctor will fax me copies of the lab results on Monday so that I can take a look at what is off. I will send them as well to Owen's Onocologist for her opinion. As one Mom told me - the doctors may do / say more to me than normal as I do KNOW so much, and know the questions to ask.
I received flowers yesterday from Glenda Walls - THANKYOU AGAIN! - She is the Mom of John - who is one of the many sites I follow (link below). Now back to the question of WHY I follow so many caringbridge sites and is it good for me? YES!!! No one can understand better than another Mom!!!! I have recieved many emails from caringbridge Mom's and many other friends. I thankyou all for reaching out and giving our family your support!
Hopefully today will be busy and no time to think. Owen had a painful day again yesterday. He slept alot of the day and when he was awake he did not feel good at all. He did perk up for about an hour in the afternoon and did play some PS2, but immediately fell sound asleep after that. He continues to eat though! He is on a hotdog and ham sandwich kick. Yesterday he ate 4 hotdogs, 3 ham sandwiches and still ate dinner! He had a restless night and took a pain medicine in the middle of the night.
I was up at 5:30 this morning - couldn't sleep. Owen was up right behind me. Excitement over the Easter Bunny! It is hard to believe at almost 10 years old he still believes. I have to believe it is due to not being in school much! I let him follow his egg trail to his basket and after checking out his goodies - he packaged it back up and hid it again so he could do it with Tyler and Jake later! He is sound asleep on the couch again.
Tyler was awake next and very happy with following his trail. His highlight was pudding in his basket!!! Doesn't get that too often around here. Finally Owen had to wake Jake up - who couldn't stop talking that the Easter bunny came.
To top the morning excitement off - our birds got loose. I think I loosed the cage top when I moved the cage yesterday. All of a sudden they were flying around the livingroom. Owen videotaped - might be a perfect opportunity for Funniest Home Videos!!! Alas Daddy caught them and returned them to their cage pretty easily.
We are hoping Owen feels well enough to go to brunch today. I had decided I was not cooking this year - I wasn't in the mood. Now I am so thankful I made that decision with everything with Jake - my head is not into organizing a meal!!! We will see how the day goes.
Happy Easter everyone!
- no thinking for me today - just enjoying my family....
Friday, April 6, 2007 4:33 PM CDT
Long day and lots of news.
Owen woke up in alot of pain again. I got a wheelchair for him at the hospital to get him up to clinic. He was just sobbing in pain. Today it was more his legs than anything else. Dr. Cherrick gave him a really good look over, and felt he was okay. The fact that his severe pain all started on Wednesday would be right on target for the Vincristine to hit him. With all that he is eating she wants him to have the Mira-lax twice a day until he starts to have a bowel movement a least once a day unless we see it turning to diarrhea. The good news is although he had Vincristine today and will get it again next week, it is really the first dose that causes this much havoc and his body will adjust and his pain should level out in a day or two. She said he should be feeling normal for the Easter Bunny on Sunday!!! He slept on the way home. I met Mom at Kinneys in Elbridge to exchange Owen and Jake.
Jake and I headed back to Syracuse to go to the Orthopedic for his leg pain. Dr. Palomino checked him over and felt he had proper movement and flexibility for his leg movements. She reviewed his X-Rays and then his blood work. She was concerned with his blood work. The ESR level was high, his platelettes were high and his WBC was slightly low. She asked if he was healthy right now and I said yes, that I was going to repeat his blood work next week. She wanted to do it today. She wanted to air on the side of caution as well. So now I was a little uneasy. I know Dr. Bright (our pediatrician) will do anything to ease my mind of anything I am nervous of - but for this doctor to want to as well??? She said it would be VERY unusual for 2 children in one family to have leukemia, however not impossible. She wanted him to go have blood work today and ordered several other tests besides the CBC and ESR levels.
Jake and I headed to the lab and he was so great!! Not a peep out of him when he was stuck with the needle. She had to take 5 tubes of blood from him for all the tests. He had to pump his hand to help the flow of blood to fill them all. He was just awesome. Course we had to stop and get a present for being so brave!
I just got off the phone with Dr. Palomino and his ESR level is still high and several other areas are low. She said this raises enough red flags to her that she wants to do an MRI of his bones to see if that shows anything. So since Jake is a very active boy and I can not guarantee him laying still for even 5 minute segments we will have to schedule this for sedation. Her office will call me on Monday to set this up.
What can I say.... this can NOT be happening. I am trying to not freak out - as we do not know anything yet. It is just too hard.. I know too much now. It is going to be a long weekend, and more until this test is over.
Please, Please say prayers, wishes anything for our family.
Thursday, April 5, 2007 5:23 PM CDT
Today wasn't much better. His pain is not as severe as it was last night but he is definately in pain. I talked to the nurse again on 5C who talked with Dr. Cherrick. She believes since Owen has no fever or vomitting that he is constipated due to the Vincristine chemo. Even though he had diarrhea last night it can still mean he is constipated. He could have a blockage in there and just the water came around the blockage - this is very similar to what happen to Tyler one time.
So he took some MIra-lax to help but so far nothing. Poor thing I feel bad for him as he is in obvious pain. His counts were good - although I was a little concerned as his WBC was 6.9 and Neutrophils 90 which he has not been that high in either for along time. The WBC is in normal range but high for Owen for some time! However the nurse said that is due to being on the steroids. So tomorrow he will see the doctor at 9 and then I can really relax once he has been seen and totally checked over.
Jakes appointment is at noon in Syracuse, so the plan is I will take Owen over and then Mom will come over with Jake later and we will meet somewhere... TBD depending on when Owen gets done. We will swap kids at that point. Wow what would I do without Mom!!!!
Tyler had a good day!!!! Yeah finally - I think the no videos for him was a total punishment and he realized I wasn't playing!!!
Jake had another Papa Fred day - he stopped to see Jake at swim and Jake asked him if he was going to pick him up. Ahhh they have their way with Papa!! So he had a fun McDonalds day! He did ask Grandma when he got home why Papa is the ONLY one who takes him to play INSIDE at McDonalds..... ahhh Jake that is what Papa's are for!
Hopefully things will stay where they are at here. Owen's pain is at a 7, last night he was a 9 or 10. Tomorrow we should know more. If it is a blockage they should be able to feel it in his intenstine.
To waiting one more day....
have a good night!!
Wednesday, April 4, 2007 6:34 PM CDT
Not a good day. Nurse called at 9:30 this morning - Owen was in her office and crying with extreme back pain. I talked to him for a minute and he said his back was just throbbing. Mom left to go pick him up. They ended up using a wheel chair to help him to the car. He came home took a pain medicine, ate and fell sound asleep for 4 hours. He had very watery diahrea practically red in color. He is also drinking like crazy. His back is starting to hurt again and it hurts if I put any pressure on his stomach. All these spell warning to me and I put a call into the doctor and am waiting for them to call back.
On top of all this - I put Ty and Jake in the tub, and Tyler immediately had a bowel movement!!! So I transferred them to the other tub and had to scrub down the first bathtub. Can I say I am about stressed to the max right about now!?
Breathe Ang Breathe....
I will update when I know anything. I needed to talk to my 'diary' here so I could calm down.
*************************************
Update 9:20pm
Spoke to the doctor. He wants me to get pedialyte into Owen. If he starts vomitting or running a fever I need to call back - or if he gets worse. He doesn't want him to eat anything - just drink. When I told Owen - his eyes got wide - 'What!!! Does he know I am on steroids??' Guess he still has his wits about him when it comes to food! So of course I ALWAYS have pedialyte popcicles on hand - or so I thought. There was 1 left in the box. So off I went to Wegmans to get more. Thankfully Chris arrived home by now. I was a spaz - I told him he needed a 'normal' job because I can't deal with any more nights like this. I have since regained my composure and am ok again. I think I am just frustrated as I thought our lives would balance out now that he is through the rough part. That we were into the 'easy' phase and things would be pretty normal. I guess I am just too anxious for that to get here and now is not the time for things to settle yet...
Owen is hurting. I had to have him sit up in our bed - while I put the new sheets on it - I did do it with minimal time of actually having to leave the bed. It hurt him to sit up, he needs to lie on his side. If he lies on his back or stomach it hurts too much. For now I will just keep watch but I am still very nervous as it just feels like something is wrong...
I will access him in the morning for blood work and if nothing else happens he will go for Vincristine at 9am Friday.
Tuesday, April 3, 2007 9:19 PM CDT
Much better day today. Owen was grumpy this morning but off to school he went. He returned home and came home smiling and talking. Mom called to tell me she wasn't sure who just walked in the door!!! Yeah Owen is back! Hopefully the steroids are starting to settle and he is getting use to them and things will go more smoothly now - here's hoping!
Owen and Tyler went to Papa Fred's and Grandma Lea's while I took Jake to Fospa. Jake was thrilled because the Easter bunny came and filled the little Easter Baskets they made while we were in the art room! He tried to sneak to see him when the teachers said they thought he had come - but he was unable to catch him!! He has big plans for catching him on Sunday morning though!!!
Tyler has had a couple bad days in a row at school. He was told tonight that his Mickey Mouse and Happy Feet videos (his favorites right now) will be taken if he isn't good tomorrow. He immediately yelled no and sat down... so I know he understood what I said ... but we'll see if he tests the waters...
Owen fell asleep on the couch before going to Papa's and Grandma's and then fell asleep again on their couch. I think the full day of school (and no nurse visit!) tired him right out. He was a little grumpy at home, especially when I reminded him we needed to finish homework. He had a couple hotdogs while we worked on it and he became very itchy. And I mean itchy!! He was going crazy scatching his head, his arms, everywhere. I couldn't see any rash though. I gave him a benedryl... I just can't imagine it being an allergic reaction to the hotdog... but then again everyday is something new here... Hopefully the benedryl kicks in and this is nothing to worry about.
Have a good night...
Tuesday, April 3, 2007 5:42 AM CDT
Owen did go to school yesterday but the nurse called a little before 2. He was just crying and whimpering in the nurses office that he hurt and didn't feel good. So much for 'pushing' him. We can't do that if he is sobbing. Mom went and got him and he is just miserable He says he doesn't know whats wrong he just hurts. I am sure the Vincreistine is kicking in my now and causing bone pain. He has 3 more doses of this. So between the steroids sending him on an emotional rollercoaster and the bone pain things are very stressful here. I have been close to tears several times... I just don't know what to do. I don't want to keep yelling at him but he is SO grumpy and mean I just can't have that either. I had called Miss Heath to see how he had been in school, but she was not at class. He said he was fine up until after lunch and then everything just went down hill. He will start out again today and maybe I can get a better feel for his attitude in school with Miss Heath back. I know they were out on the playground when he said he started to not feel right. I wonder if it is due to his bone pain or knowing he can't run and play as hard as the other kids and that sends him spiraling.
Please pray we get through the next 17 days of steroids, they have not started out very well....
Sunday, April 1, 2007 8:13 PM CDT
ahhhh Steroids gotta love them (NOT!)
Yesterday was good - I ended up bringing all three boys to the Skaneateles Rec Center for swimming. The coordinator of the ARC event called and hmmm yes he was sick again - but he wasn't cancelling this time. Tyler was the only one who had signed up and since I had signed up anyways to go he said I was still welcome to go - just he wouldn't be there. I didn't realize it was open swim - they just send supervision for the kids whose parents don't stay. So last time they held this I could have taken Tyler then too.
So anyways off we all went and it was a fun day. It is soooo nice now that Jake has become a swimmer. I went in for a little bit and then I just sat on the side and watched the three of them play. Owen did pass the strength test of swimming the length of the pool so he was able to do the slide too. I wasn't sure with as weak as he has gotten if he would still be able to do it. Tyler went running for the slide too and after carrying him down the steps and showing him the height sign he never asked again - so that was good. He had an absolute ball - I nee dto take him more - he is such a little fish. We hung out for almost two hours and then got a snack and headed home.
Chris and I went to dinner last night for Billy Trojnars 40th birthday. Happy Birthday Bill!!! We were home by 10:30 to a crying Owen. He had been trying to call me and I never heard my phone - it was right at my feet and it wasn't loud in the Sunset.... He was fine - just wanted me home.
This morning started out in about the same mood. He was grumpy and cried at the drop of a hat. He did fall back asleep on the couch from 8:30-11:00 ( he got up at 8). He seemed in a better mood for a few hours, but then it was back to being a time bomb! I didn't think the steroids could hit him so fast but they certainly seem to be. It was an exhausting day. We did manage to color eggs and then made for good moods all around. After cleaning that up we headed to Papa Fred's and Grandma Lea's for some cake for Grandmas birthday. The boys played a bit and then we headed home for dinner, tubbies and bed.
Owen had another crying spell in the shower. I think it is going to be a looooong 21 days!
So if I looked exhausted or stressed out I am surviving the steroid zone. Have a good night!
Friday, March 30, 2007 6:51 PM CDT
A new day... a new Owen! He woke up this morning andd wasn't sure how he felt. So he got in the shower and that helped a little bit. He still felt a little achy, so he went back to bed. He called me around 9 and said he felt good and was ready to get his chemo today. I set up an appt. for him to see the therapist before his 1:15 appt and was ready to walk out of work when Mom called. Dad was picking up Jake today for a Papa day so she said she would take Owen over.
All went well with his appt. but then he started to get back spasms. He was in alot of pain and the nurses all came in and checked him over and couldn't see anything. The Vincristine he got does cause bone pain however that was way too fast and it was his back. They gave him tylenol and kept him for observation. Poor Mom - everytime she takes him something happens!!! She said the only thing she can think of is the way he was sitting in the chair may have caused some his back to get sore, but she knew he was in pain - he just started yelling and his eyes were all wide. They finally were released about 4 and I met them at wegmans to take Owen home. He got a craving for meatloaf for dinner. Great steroids haven't even started and his cravings have!!! We have 21 wonderful days of steroids to endur. I can deal with all the food - yeah even the 2am hunger pains but I just pray the 'roid rage doesn't come out.
Owen doesn't go back now until next Friday and it is just the Vincristine chemo. That is the day Jake meets with the Orthopedic surgeon on his leg pain so I will have to coordinate this.
Chris stayed home sick today and isn't feeling good at all. He did start perking up mid way through the day but is back to feeling awful.
Tomorrow Tyler is going swimming at the Skaneateles Rec Center indoor water park. It is for the Seneca ARC. I haven't told him yet, as the last time it was scheduled the guy running it ended up with the flu and had to cancel.
It was another fun day outside for Jake and Tyler - they love being able to go out again. I wish it were just a touch warmer... but hey it is no longer snowing!
have a good night!!!
Thursday, March 29, 2007 4:46 PM CDT
Another bump in the road... seems like we keep trying to climb this last big hill and get started on the maintenance schedule but keep rolling backwards. I got Owen's counts today and he passed for getting his chemo and start Maintenance. Yeah I was so happy. Then the phone rang - first it was Port Byron, Tyler seemed to have a eye really itchy and was slightly red. Since they had a pink eye outbreak they thought he might have it.. so I was leaving to go get him. Then the phone rings again... Owen has a fever 100.4 and is achy all over, and throwing up.
Maria runs in and asks me to wait just a minute she has to talk to me. Next thing I know everyone is in my office singing Happy Birthday!!! They have been waiting since I was not in on my birthday and then someone in my department has always been out for them to 'catch up' with me!!! Thankyou!!! I truly thought I had escaped!!!
I called the docs about Owens fever and they were going to track down the doctor and find out what to do. So I headed out for Tyler. Mom called again and he was up to 101.2.... here we go.
I picked Ty up and headed home.. Doctors office called and they did want to see Owen. So I dropped Tyler off at home, Owen was now 102.1 We arrived and Owen didn't feel good at all, I located a wheelchair to help him get into the clinic. Since he was still accessed from me, he was deaccessed - to rule out any infection in the needle line and to put a fresh needle in. The doctor listened to his chest and he sounded very junky in there. So first they sent us down to get an X-ray. By the time the X-Ray came back Owen was feeling a little better - the tylenol was kicking in. His X-Ray was clear. The doctor also said his Flu test was negative. So what-ever viral thing he had over the weekend seemed to be flaring back up. She had thought with the sound of his chest it might be pneumonia - so that was good. They took blood cultures and we were free to go. Since his immune system was over 500 they would not do antibiotics, so I could keep an eye on him just as easy at home as sitting in the hospital.
Tomorrow's chemo is still on schedule. He is suppose to get Vincristine - a 2 minute syringe push into his port, Aspariginese shot in the leg and then start 21 days of the dreaded steroids!!! I have to see how he feels in the morning. If he is feeling really awful, then I will postpone it. I am concerned that he will drop in counts again with the fever. He was 860 ANC and needs to be 750 to get the chemo. We'll see what tomorrow looks like... one day at a time right????
I got him a cough and congestion medicine to take to help with his cough and hopefully clear up what ever is dragging him down. He just started to spike again... he is 100.6 so I gave him some more Tylenol.
Tyler seems fine. I did start the pink eye drops that I had from when Jake had it. His eyes don't look red so maybe he just had some irritation this morning or maybe it was caught early enough that the drops are preventing it from getting worse. In our house its anyones guess of what is going on!!! Chris also came home early from work today sick. He looks and sounds awful. So I am on alert in every direction.
Hopefully it is a good night....
Wednesday, March 28, 2007 8:01 PM CDT
Happy Belated Birthday Grandma Lea!!!! (yesterday) We love you!
Home Page picture is Owen and Zarina - we miss you so much already!!! Thankyou for everything and always being there for us and explaining things so clearly!
The Relay for Life Fundraiser is officially underway. We are looking for people to join our team and help walk from 6pm - 10am on June 1-2. You are welcome to walk a little or stay all night. We are hoping for good weather this year and to camp out!!! Donations are greatly appreciated and I have included the link to Owen's Relay page above. Donations can be made directly online or there is a link on the page to print a Donation Form (scroll down on Owens page - it is under the online entry spot), and mail in a Donation. Make sure to specify the Nucor / Owen team. You can also join our team through this link or purchase Luminaria candles in Honor of or in Memory of someone special. This year teams are going to have Themed campsites so we are thinking hard for what to do!!! The idea behind Relay for Life is that people who deal with Cancer and their caretakers deal with Cancer 24-7, so the Relay is to signify just 1 overnight experience. Our team captain (Owen!) is very excited about the Relay - despite the weather he really did have a good time. If you know of anyone who would like to Register for the Survivor lap please let me know and I will get that done for you.
Thankyou in advance for making this year another success!!!
Today's meeting with Owen's teachers and principal went very well. I think we are all on the same page in getting Owen back into the swing of school life - (once his counts recover from the Flu), and build up his stamina for a normal school day. We all agree that he needs to be pushed, and that he does definately play up when he is not feeling well. Fifth grade will be very intense compared to what little bit of school he has been able to attend this year. The teachers will continue to work on any weak areas (mostly writing, sentence structure, note taking etc) the rest of this year and through the summer. Nurse visits will be minimized (remember those Nurse Jane!!!) As many times he used the nurse to just take a break and really is feeling fine. I feel really good about our meeting and am looking forward to Owen getting back in the routine of normalcy.
Tyler didn't have a good day. He misbehaved on the playground and sassed the teachers when he was corrected. He knew right away when I spoke to him and then Daddy re-inforced how his behavior was NOT acceptable. Hopefully it was just a fluke and he will get back on track too. He did initially get in trouble for climbing up the slide the wrong way.... and guess we need to be blamed for that. This is allowed at home as I looked at it as a good physical activity for him.. however it is not acceptable somewhere else, so again this will confuse him.
Owen seems to be feeling pretty good, although he still is coughing quite a bit. I will test his blood again in the morning in hopes that he will be good to get his chemo on Friday.
Have a good night!!
Tuesday, March 27, 2007 6:24 PM CDT
Owen's ANC keeps dropping. I checked his blood on Monday and then again Today. His platelettes are now good enough to recieve chemo, but his WBC keep decreasing. He is at 1.1 today with and ANC of 440. So he is below the 500 mark again and needs to be careful. He has alot of monocytes so hopefully it will begin to climb back up. I will retest him again on Thursday with the hopes of getting chemo on Friday.
I keep thinking we are going to ditch these set backs and Owen will get on schedule stay on schedule and return to school normally! I guess the Flu is unexpected and these things will creep up and for Owen these illnesses will take a bigger toll than a normal child. Miss Tracy came yesterday and Miss Heath today. Tomorrow I meet with them and with Mrs Burcroff the principal to discuss where Owen is at and what the plan will be going forward. They will continue to tutor through the summer to fill in the gaps. Remarkably there are not that many. His writing skills are lacking, and the ability to phrase his answers correctly. He KNOWS the answer he just has a hard time putting it into words. His Math is awesome and so is his reading comprehension. But there is things to work on and he will catch back up!
Tyler had a field trip today to Syracuse to watch the play 'Rainbow Fish'. He eenjoyed it and did his little excitement dance for me at home to tell me how good it was!
Jake has his orthopedic appointment on April 6th to see if she has any ideas on his leg pain in the right leg. With the flue lingering in the house and coughs we are holding off re-testing his blood right now.
We were able to play outside today - I dragged the bikes up from the basement and it felt good to be outside! Looks like quite a few days of nice weather coming up!
Have a good night!
Sunday, March 25, 2007 5:01 PM CDT
We are home. Owen never ran another fever. He woke up around 1am achy all over again but never spiked. He was also very tingly in his hands and feet. He took some tylenol and was back asleep. The detail analysis is not back yet for determining the flu and Dr. Cherrick said today it could take 2-3 days. So since he was back to feeling better, she would send us home on the tamiflu as it wouldn't hurt for him to be on that until they knew whether he had the flu or not. I think Owen just needed to go back one more time and see a couple of his favorite nurses he didn't get to see on his last scheduled inpatient!
I will re-test his blood in the morning. His counts did drop from 2.6 to 1.4 and his platelets are 65. He needs to have 75 platelets and an ANC of 750 to get his Vincristine and aspariginese shot on Tuesday. I think he will go back up but with the cough still hanging it may take a little longer. He was suppose to go to the dentist in the morning but I am going to switch him to wednesday (Jakes appt) so not to stir up any more bacteria.
We made it home in time to pick Jake up from a birthday bowling party. He had a blast and I was so glad he was able to go. Chris dropped him off and then him and Tyler did some errands.
Miss Heath even came over today to finish up his ELA math test. He was feeling well enough to do this. He will stay out of school until we get the news of the flu and his body gets strong enough. Hopefully after the dentist on wednesday he will be ready to go back.
Thanks for thinking of us!
Saturday, March 24, 2007 4:19 PM CDT
Owen has been admitted to 7H. He spiked a fever this morning 39.7 (103.4). Doctor wanted him to come in to be checked. He ached all over and had a hard time walking he felt so weak. I carried him from the car to the hospital ramp and thank goodness there was a wheelchair there as I couldn't carry him any further! His fever had decreased some but was still 39.1 (102.4). He was cold and just hurt. Dr. Cherrick wanted them to do a flu wash. The flu is getting a late start this year and is just starting to hit everyone (in hospital and even normal community).
The 'fast' flu wash test came back and was negative - but 30 f the rapid tests give false results so it has been sent for the 24 hour test as well. He is on antibiotics and blood cultures were taking from both his port and a periphyrl (vein). These generally take 24-48 hours. His immune system is kicking in so that is a good thing WBC up to 2.6 from .7 They want to keep at least a 24 hour watch on him until some of the tests come back. I said I am fine with that - we feel safer here with him feeling so awful than as home, we will stay as long as needed!!
He is sound asleep now. The fever has gone down with tylenol. I will keep you posted on how he is doing.
Friday, March 23, 2007 5:44 AM CDT
Owen needed more blood yesterday. So I was off to grab him from school. He was shocked to see me show up and I interuppted his project in computer lab! WE spent the afternoon at University and arrived back home around 6. His counts did drop some WBC is .7 but he had monocytes so it will be coming back up soon. However it was low enough that he will not get chemo today. So I will recheck his counts on monday and he should be set to get his chemo. He will be getting Vincristine - just a quick 2 minutes chemo push into his tubes, asparigenese shot in his leg and a prescription for 21 days of steroids!!! Oh my grocery bill is feeling the pain already!
His ANC is hovering around 500. However I am going to send him to school. He has enjoyed his last couple days there and today is a bowling field trip so I hate to strip that from him! He so needs a day of fun with his friends at school. Our clinic day will be moved to tuesday's if he is okay then so I will need to move his therapy day too.
I finally got the call from Dr. Bright. We don't know 100 percent yet. His x-rays look fine, however since he still complains on and off of leg pain only in one leg she wants to be over cautious and send him to an orthopedic. If it were both legs she would say growing pains, but 1 doesn't make sense. His normal CBC blood work looked good. HOwever the ESR - sed rate blood work was elevated, so she wants to repeat it in 2 weeks. What does this mean?? An elevated ESR means there is an inflammation in his system somewhere. It can be elevated though for any kind of viral infections though too. He has a cough right now so until that goes away we can not re-test. He needs to be feeling great, no symptoms of any cold when we re-test. I did need more info so of course I turned to the internet... and I saw the dreaded words... leukemia for elevated ESR! I am not going to panic, he has been on and off with colds and just pecid for months and this itself can cause the elevated ESR. Since his CBC shows no abnormality I have to hold onto that. As soon as possible we will retest and get the 100 percent peace of mind I need to hear. I just know it can't be possible for all 3 of my children to have something!!! Please keep us in your thoughts and prayers that the elevation is only from viral infection going on.
Thursday, March 22, 2007 5:24 AM CDT
All is well and Owen went to school yesterday!!! He seemed in a great mood when he got home and glad he went. I am not sure why he fights going sometime, or maybe he really wasn't feeling good it is so hard to tell it seems. Owen did tell me coming home from getting blood on monday that he gets uncomfortable in school when all the kids ask him so many questions about his cancer. He said he doesn't like to talk about it yet they want to know. I told him that they haven't seen him in a shile so they are curious to what he was out for and just how he is doing. I told him just to answer them briefly and tell them he just doesn't want to talk about it. Once he is back in school (hopefully very steady now) that will calm down since he is there all the time and he will become just 'Owen' again. Not Owen who is out sick all the time. So hopefully this will make him feel better.
Still no word on Jake. I was getting very concerned on why I am not hearing. I called the doc's office monday and tuesday and both days were told the results were not in. Yesterday afternoon the nurse called and she is unable to find a record of Jakes labs and wanted to verify where he had the labs and xrays done. She was calling ST. Joe's!!! So hopefully today they will get in touch with Auburn and I will know something!
Well SU's career came to an end last night so our 'mini-vacation' to NYC next week is cancelled. They dug a hole too deep to get out of, but made a great effort. I was on the edge of my seat.... See you again next year SU!
Have a good day!
Wednesday, March 21, 2007 5:27 AM CDT
I can't figure Owen out. He woke up yesterday morning just miserable and that he didn't feel well. He just wanted to stay home, he would read, do flash cards what ever just please he couldn't go to school he was too weak and felt like he was going to throw up more. I made him get up and sit on the couch and we could decide before the bus came. He ended up staying home. He just cried most of the morning of how crappy he felt. So back up to bed. He wasn't allowed TV or any video/ gameboys etc. He did end up falling back asleep for several hours but woke up no better. He had no temperature, his blood pressure was fine so I just don't know. He did perk up for a few hours around 5.
Tyler is back in school, but is on an anitbiotic as his nose was starting to run again. Luckily I still had the refill to use!
I took Jake to FOSPA and he had a blast again. It was a presentation by EAT WELL, PLAY HARD... so it was lots of activities in the gym again. I was exhausted by the end!!!
We arrived home and Owen was back to laying on the couch saying he just ached all over. He was running a low fever (100.1) Chris was busy finishing unloading our room, our rug comes today!! I can't wait to put our bedroom back together we have been living with the new furniture in each of the kids rooms, and a variety of odds and ends stashed all over. Tonight was the final removal of Chris' dresser, end tables and our bed. All that is left is a mattress on the floor which Ty just loves!! He is running in and out our room and flopping on the mattress!
Owen did spike up to 100.6 at one point - the new number to call the doctor at is 101, but Zarina still wants Owen to call in at 100.5!!! I decided to wait, get snuggled in bed and relax and see if he continued to climb. He did come down to 99.8 then crept back up to 100.2 but never got any higher. So I guess he has something going on that is trying to decide if he is sick inside him!
I have to meet with the principal next week to discuss his plan for the rest of this year and into next year. The PLAN is- he should be back in school full time - even now! So this plan thing could be tricky! I am hoping this is still just the last of the higher dose chemo causing havoc on his system - as he did not crash so this may be the alternative - felling a little off. Hopefully in a few more days this will all even out and he will return to feeling normal and good and will be in school full time again.
Have a good day!
Tuesday, March 20, 2007 5:15 AM CDT
As expected Owen needed blood on monday so it was a full day at clinic. His counts however did NOT drop! He is hanging about the same ANC around 850 but he does have neutrophils and monocytes so he may not drop this time. Typiclally the dosage should be where the body will tolerate it and not drop so there are no delays in the schedule. So maybe his body has finally adjusted to his reduced dosage and he will stay on schedule to start maintenance portion this friday.
Since he did not drop we did let him go to the SU game last night. GO Orange!!! They set an all time high for NIT attendance with 26,700!! Owen started to feel crummy with about 4 minutes left in the game. At 2 minutes I took him out and back to the car. He did end up getting sick at home but then he was chatty and feeling 'ok' after. I think it may be all the food he ate yesterday between at the hospital and the game he was on a eating mission. Hopefully that is it!
I am planning on sending him back to school today. I will re-check his counts on thursday to make sure he his are ok to start maintenance phase on Friday and get the Vincristine chemo.
Have a good day!
Sunday, March 18, 2007 7:35 AM CDT
Happy Be-lated Birthday Mom!!! (It was yesterday 3/17)
Today we are planning to go to Ithaca for some Target shopping and lunch.
We went to dinner last night at Delmonico's in Syracuse and it was delicious! Thankyou Dad and Leanne for a great night. It was good to see my brother Steve and he enlightened us on many goverment rules...like how we will all be implanted with micorchips very soon!! LOL for those that know Steve he can either be very quiet or VERY enthusiastic on his speaches. We went back to Dad and Leannes after and watched the UNC basketball game.
Owen, Tyler, Jake and their sitter Kim went bowling. They had a very good time! Owen called after bowling and was very happy and bubbly over their games - as he kicked butt!!! However the night turned bad... he assumed we would be home soon since we had left the restaurant. When we didn't show up he called again and we were at Dad's - he was sobbing that he needed me to come home. We are trying to re-gain control in our house as Owen has become the 'diretor' and everything seems to revolve around what he wants/ needs medical or not. I told him we would be home after the game. By the time we got home he was pretty much hysterical, absolutely nothing wrond he just wanted me home. I felt bad for Kim. She said he just sat on the couch and cried and wouldn't do anything. When he did attempt to play with Jake and Ty it was antagonizing them. Ahhh yes we have been down this road with Owen before. He is already stressing over not being able to go to the game on Monday and having to stay home with a sitter. I know he is going to be too low to go but maybe I can get a friend to come over for a bit so he has something before bedtime. I don't want Kim to go through another long night.
Owen did end up throwing up when we went up to bed - not sure if it is because he had himself so worked up or what. He seems fine this morning.
So a little shopping today and then maybe some playing in our new snow!!! Boy did we get alot! I hope this is the last 'hurrah' and spring is coming!!! I am ready for winter to end.
Have a good day!
Friday, March 16, 2007 8:18 PM CDT
Good day today. Owen went to clinic and met with Ruth and had fun there. I htink he enjoys his sessions and we want to keep this going. He got his pre-meds started and then we met with Zarina for a check up. Owen gave her a nice card he made... we sure are going to miss her!!!! She is there one more week so I have to remember our camera for next week!
Owen fell asleep during his second chemo - all the premeds- make him sleepy! Then he has to get hydrrated for an hour after so it was a pretty full day, we left a little after 3. He is border line for needing blood. He was 8 and generally they will transfuse at 8 but since his iron is so high they wanted to wait until he dropped more over the weekend and most likely he will need to return on Monday for blood. He is also getting ready to crash on counts. His WBC was only 1.0 today. So with the chemo today he will probably bottom out over the weekend, so we have to be on the look out for fever. Unfortunately this means he will not be able to return to school next week or go to the SU game Monday night. I will be testing his blood monday morning so we will know for sure where he is at then.
I didn't send Tyler to school today. He did wake up a little before 8 with no fever but at that point it was too late to send him - the bus was already cancelled. I figured it would be good to keep an eye on him anyway today. He ended up having a good day all day, no fever, was eating good again but has a little runny nose. So hopefully his bug is over too.
Jake did great at his tests. He was nervous about getting an electric shock from the x-ray, but did great. He loved looking at the pictures of his bones. Then off to blood work. He told me he didn't cry just yelled 'OWWWW' and then it was done. He shows everyone his needle hole. We should here from the doctor on monday and then we can all be happy that there is NOTHING wrong.
Today was my birthday - I got BEAUTIFUL flowers from my mother-in-law Bonnie. Thankyou!!!! I got some spring clothes from my mom- can't wait until warm weather to start wearing some!! Thankyou Mom!. My boys gave me a rain jacket and some summer clothes... oh I need warm weather, just looking at the clothes makes you want to start enjoying it. My hubby has been busy doing lots of Honey-Do's around the house so I am really thrilled! I always tell him thats what I want for my birthday so he is listiening! We enjoyed a nice dinner and then some icecream cake, each of the boys took turns blowing the candles out. Tomorrow we are going to dinner in Syracuse with my Dad and Leanne and brother Steve.
I guess thats it... thanks for checking in and have a good night!
Thursday, March 15, 2007 7:07 PM CDT
It was a nail biting night at the dome, but Syracuse pulled it out. My friend saw Owen and I on TV as we were walking up to the dome! We had no problem getting tickets. We were in the third Row in the upper section and Owen did not like the seats! (spoiled from his Georgetown seats LOL) He was nervous up there and there is not rails on the back of seats so he felt scared, plus the brightness of the lights were giving him a headache and the kid yelling every second behind us didn't help! At six minutes into the game I looked at him and he had tears streaming down his face. So we left our seats for a walk. We went down to get a snow cone and ran into one of Owen's nurses Aubrey. We got talking and her husband was actually sitting courtside with us at the GTown game too! Too funny!
We went over to our regular season ticket seats and they were full but the other end of that section was not, so we went over to sit there. The ticket guy tried to stop us but I begged to let Owen sit there - he had a bad headache and needed to be in the low light area. I always say Owen is part vampire! So he agreed as long as we moved if the people came for those seats. Owen laid his head in my lap awhile and then by half time he was feeling more himself again.
So we are back off to the Dome on Monday - GO SU!!!
Tyler went back to school today but it may have been too soon. They said by afternoon he didn't seem to be feeling well and sure enough by 6pm he spiked a fever 102.6 So looks like some more down time for Tyler. I missed his phone call again today - the last few times I have missed it, will have to get better about watching the time - today I was actually on my cell when the call came in so I didn't realize it! We will get back on track - I don't want to ruin a good thing!!!!
I took Jake to the Doctors today. Just wanted a total physical and to go over our worries for him. Dr. Bright agreed it was better to but all our minds at ease if we just didn't like the way he has been looking. This week he has taken a nap every day which is not Jake at all. So tomorrow he will get blood work and X-rays of his hips to knees. He complains of leg pain in his right leg quite often, but then he is fine. When the doctor moved his legs all around he said it hurt when she did his right leg (but had a big grin), and then didn't hurt when she did the same to his left. So not sure how the grin fits in. But never the less - tests tomorrow. We will all breathe easier knowing we are just over sensitive to every little sign....
Owen is off tonight to see 'High School Musical' with the Walawenders. Thanks for taking him!!!! He loves that movie.
Tomorrow will be a long day. He meets with Ruth for therapy at 10, then pre-meds and chemo starting at 11. He gets Etophous and Cyclophosphamide. I will access him and bring in a tube of blood so they can run a cbc while he is with Ruth to check his counts and make sure he doesn't need any transfusions.
Mom is going to take care of Jakes side so we can get that done tomorrow too. Tyler will go to Papa Fred's while she is getting that done - I am sure he will not go tomorrow.
So busy all over!
Have a good night!!!
Tuesday, March 13, 2007 8:14 PM CDT
Owen was back to school today. He made it all day with only one trip to the nurses office and that was for tripping on the sidewalk and twisting his ankle. So his ankle is a little tender but no swelling.
Tyler did not make it to school. He woke back up with a fever and ended up throwing up and just not feeling good for most of the day. Jakes was thursday & friday and by saturday he was fine. Hopefully Ty will be the same - but knowing Tyler he likes to hold things a little bit longer than most!
Jake and I finally made it to a FOSPA session tonight (preschool night school for parent and child). He had a blast. After activity time we went to the gym - Jake was in his glory!! He was racing across the gym and sliding on his knees. They practiced how to do 'baby' hits with a soccer ball and then the big kick to score! He loved that which is good because I signed him up for soccer this summer.
Tonight my Dad and Uncle Bernie were at Millstone and got talking SU with some people and then it turned to the Georgetown game talk. They told my Dad how their Corporation helped a child go to the game!!! Yep - they were from HDL Corporation and it was Owen they were talking about! What a small world, how neat was that!
Tomorrow if Owen feels well enough after school we will take him to the game too. The HDL people said they waited 2 1/2 hours in line for tickets though! So if we get there and it is that long of a wait... I believe we will be watching it via TV somewhere near by!
Have a good night!!!
Monday, March 12, 2007 7:58 PM CDT
We arrived home shortly after 8 last night. Owen got sick as we were going out to the car. Didn't stop his cravings for chips and french oinion dip though. So we stopped at the store and headed home. After eating chips and dip his stomach was upset again... I figured it wasn't a good choice but one thing I have learned is to go with the cravings! He didn't get sick, but did not go to school today which ended up being good as he didn't feel good in the morning and ended up with diahrea today. By 5 tonight he was feeling good again. So much so he even got out his Karate tapes and practiced for about 45 minutes! He wants to start Karate back up. I told him that once he got back in school full time and built up his stamina for that, Karate could come next. But how great that he has an interest. I think he is seeing the light at the end of the tunnel now and realizing he will be able to do things again. Owen should return to school tomorrow and he is pretty excited about it.
Tyler went to the ear doc today and after 2 weeks of ear drops the wax was soft enough that they were able to pull out quite a bit of wax and get good ear responses. I will continue the ear drops at least 1 week a month to prevent wax buildup inside the canals. Chris said he was just great - he usually is for this so I think he knows it will feel bettter. They did not have to strap him or anything. He laid on the table and the doc went in under the micorscope to pull the wax. Sorry Mrs Richards - forget to let you know that Ty would be late!
Tyler went to school after and had another good day. However by the time I got home just after 5 he was running a fever! 102.6 and feeling pretty crummy. Not sure if the cleaning out of his ears could have stirred up anything??? The power medicine Motrin wipes out all signs of illness so until that wears off around 11 tonight we won't know if the fever was a fluke or not. It could also be what ever Jake had - you know we like to share illness in this house!
Jake was complaining of leg pain again today. His teacher said he never complains of it at school. But that was the first thing out of his mouth this morning when Grandma woke him up. I do have a physical with Dr. Bright set up for thursday so we'll see on him too!
Well I am banning the NCAA - how dare they not bring in SU!!!! The only good thing about it I guess is we get to go watch them one more time at the Dome on Wednesday.
** For everyone that called my cell today - SORRY - I could not find it and finally after many searches and calls I found it UNDER my drivers seat in the car, it must have fallen out of my purse last night. **
Have a good night!!!
Sunday, March 11, 2007 2:06 PM CDT
Things are looking good for going home today. His first level check was 1.0 2nd level at 11:30 was .26 ( he has to get to <.2) Next draw will be at 5:30 (all my times yesterday were off an hour due to Daylight savings time!!!)
So our bags are packed and they are geting everything in process to scoot us right out if his levels are good. Hopefully the level reading will come back quickly! I am guessing - if no issues we should be on our way home by 7pm. So if I don't update again it means we made it home and I am getting some snuggles in with my other 2 boys before bedtime.
Owen feels good and has had no more nausea. He will return on Friday to clinic for outpatient chemo, and that will be the official end to intensification and the following Friday -the 23rd is the beginning of Maintenace.
It is a good/bad feeling leaving the inpatient cycle and heading to maintenance. My biggest anxiety comes from knowing that most kids who are going to - relapse during the maintenance phase. It is a time when chemo is still being given but at a lowere dose and thus gives room for leukemia to start again. On the other hand it is the sign that your body is ready to try and stand on its own again and you pray that the leukemia will NOT begin to grow again. Will I ever feel 'safe' again?? Probably not considering it was 2 years before he relapsed last time. Not to dwell though... one day at a time... and cherish each good day. I look forward to Owen having a more normal life - as well as all of us. But Owen definately needs more social activiity with his friends and school, that tooks its toll on his mental state this time around.
We will miss all the nurses and staff of 7H, they were wonderful, and we are blessed to have met them. They all have a very hard job and deal with the ups and downs of cancer daily yet always help anyone through the day. We LOVE you 7H!!!!! We will visit, just no over night 'vacations' LOL!!
Have a good day everyone!
Saturday, March 10, 2007 5:48 PM CST
Chemo has finished now it is just the wait until it leaves his system and Owen is finished! Today was a good day. He started complaining of any upset stomach at 9 last night but fell asleep right after. This morning he was up by 9 and ready to eat breakfast. As he was eating it he said "hey Mom - I'm eating I didn't shut down!!!" He usually doesn't eat when he is on methotrexate so this is good!
We worked on some Arts and Crafts - making Thankyou notes and then Owen went on to play playstation of course. Later on I ordered Pizza and Wings for the floor to celebrate (knock on wood) our last inpatient! Owen dressed in the gown so he could eat out in the day room with the other kids. He just started to eat and got sick... I went running for a bucket. good advertisement for the Pizza and wings :-)
After he got sick though he said he felt fine, sat back down and ate more pizza! These kids are incredible - it no longer even phases them to get sick.
He put on gloves after eating and played dinosaur with a little boy (almost 4) that was in the dayroom. I asked the nurse if it was okay and she said as long as he was all gowned and gloves she didn't have an issue. I was talking to Gina when we first came in on Friday and she said when Owen got diagnosed with the MRSA and would always need to be isolated they were all like "Not Owen"!!! They KNEW Owen was the social bug up here, and if he was feeling good he was never in his room. He actually looked forward to his inpatients because while at home he had to be confined alot on 7H he could do just about anything, and is sooo good with the little ones.
Next week is Child-Life week here and we filled out our 'stars' to hang on the ceiling - we each had to make a wish. I wished to find a Cure for Cancer. Owen wished to come back to 7H for visits only.
Jake seems to be fine today. No fever, no complaints, so maybe he is over the bug he had.
They will take the first level check on Owen at 4:30am (hour36) and then again at 10:30 (hour 42) and 4:30pm (hour 48) So hopefully one of those will be .2 or lower or we will be here until Monday. I believe after hour 48 they go to checks every 12 hours.
Still waiting to get his blood started - should be soon.
Have a good night!!!
Friday, March 9, 2007 5:06 PM CST
Room - 7604 and phone is 464-3683 it will be posted below as well.
All is going well. It was a long wait for our room. We arrived at 10:30 but until some discharges were finished we had no room. Owen went down for tutoring since we had to wait. At 1pm they took blood to double-verify he was okay to start and to check his hemoglobin level to determine if they should do chemo first or blood. He then start the pre-hydrating process. At 2:30 we made it to our room, and at 4:30 Owen's system was hydrated enough and had enough biocarbes to begin the Methotrexate. With Methotrexate the body has to have certain levels prior to beginning. Owens levels need to be at a higher level than others due to the mouth sores and thrush this chemo has given him in the past. So he gets double hydration and only 75percednt chemo. The chemo will run for 24 hours, then it is the wait and see how long it takes to get back out of his system. His hemoglobin actually increased from 7.3 to 7.6 so they will wait and do blood after the chemo.
We had sad news today. Zarina our NP is resigning. She wants to be home with her children more and I can't blame her!!! I would do it in a heartbeat! We will miss her so much as she has been a wealth of information to us and always takes the time to make sure we understand everything. She always makes time to answer emails, pages anything! She knows Owen VERY well and I will miss that. I feel very secure with Zarina. Owen was funny... he wanted to make sure her husband would be able to 'provide' for them properly if she quit working!
Jake continues to not feel good. He woke with 104.2 temperature this morning!!! As soon as the Motrin kicked in though he was very happy. I am concerned with this high temp and also when his fever is acting up he complains that his leg hurts. He has not spiked another fever yet today but has been quiet and warm. If he has a fever in the morning - he will go to the doctor and I will meet Mom there. Chris will stay home with Tyler.
Have a good night!!!
Thursday, March 8, 2007 7:22 PM CST
Locker room pictures are on the slide show!
Owen had another good day at school and came home in a great mood. It is soooo awesome to see that. It feels so good to be back with his friends and part of the group.
Tyler continues to have good days at school. Who knows what has caused him to change but I am loving it! His eating at home is awesome. He still loves his french fries and waffles, but fruit and veggies are his FAVORITE at dinner time! So far no success on the potty - the McD's count down hangs on the wall with no X's Tyler has asked to go to McD's a couple of times and I keep telling him no more FF's until Tyler uses potty. I KNOW he realizes he is not getting FF's its just a battle to see who is stronger...
Jake is getting sick... He was fine this morning and then on the way home from school, he was half asleep and told Grandma he was just tired. He then curled up on the couch with his blanket and just wanted to rest. He had a low temp 100.3 In no time he was asleep. He woke up feeling great but then by 6o'clock he had 102 fever. The motrin has again kicked in and he is feeling good, but that will end with the medicine I fear. So we'll see what this brings.
Owen's counts are good to be admitted tomorrow although he does need blood. So he will get blood first and then get pre-hydrated for a couple hours and finally the chemo Methotrexate will start.
Have a good night!
Wednesday, March 7, 2007 7:30 PM CST
Back to school today! Owen took his ELA math test today and said it was 'easy' so we will see when the results come back...
I had the first Relay For Life meetings tonight. I am going to be the Team Leader for Nucor this year and will pass more information on to you as I find it out. Owen, Tyler and Jake hung out at Papa Freds and Grandma Lea's while I went. They were happy (especially Tyler ) to see them home again. Tyler went in the door yelling "PAPA... we here!!"
Owen got a call tonight from his 'old' girlfriend at school, so I think that is wonderful inspiration fro him that he is not forgotten... being back to school will be so good for him. He was grinning ear to ear.
I officially booked a flight to Florida today to visit my girlfriend Lori. I am taking Owen and Jake ( it is over spring break) but leaving Tyler at home. We will basically be sitting at the beach or in their back yard and Tyler will get bored very easy. I want to get away and relax and enjoy. Owen and Jake will be trhilled to play in the ocean and sand all day long. So yes I am struggling with guilt, but I know I can't do all three either on my own! So I am going to spend the day before we leave as an all day Tyler day to do some special things. Hopefully he can get some more special days with Grandma or Papa or Daddy while we are gone (it is only 4 days). The bad part is I have to travel for work a week later. But it may seem like it is still the weird lifestyle we have now where I disappear. Then I hope to stick around home and no more travel to let the home life balance out.
I tried to send the rest of the pics from the SU game to myself from Dads tonight but it looks like the file was too big, so I will need to get them one by one or copy them. They should be on the site soon so keep an eye on the slide show...
Have a good night!
Tuesday, March 6, 2007 7:55 PM CST
The 20 below weather hit and boy was it COLD!!! So needless to say all schools were closed. Chris and I did some carpet shopping and so mom was blessed with seeing ALL her boys again and after 1 hour she had a headache!!! No school seems to make them all crazy!!! They did nothing but fight today.
But on the health front all is well and we are getting close to saying good bye to inpatient! So hopefully more normalcy here will lead to all the boys being happier!
Not much else to report so have a good night!
Monday, March 5, 2007 5:57 PM CST
All is well... Owen returned to school today!!! He was restless last night with the excitement of going. He did call at 2 today and said his legs were bothering him and wanted to come home. When I arrived home he was sound asleep so I think part of it was just being over tired with lack of sleep. At first I thought it was just nerves, as he does get anxiety over returning to school, but he was chatting away at dinner about school and how much fun he had.
He IS going to be admitted on Friday instead of next week. I talked to Zarina today and since his counts have rebounded and his system is ready she thought we might want to get the last of the inpatient chemo over. Do we!!! It will be nice to finish up this part of his schedule. He should be able to return to school next week, and then after receiving the outpatient chemo on Friday his counts will drop again for a week or so.... but then when he returns it should be for good!!!! Yeah, we are doing the happy dance here!
Tomorrow isn't looking good for school though. There are high winds and forecast for temps to be 20 below 0 with the wind chill. Jake's school is already delayed an hour. Snow plows have been pulled from the roads tonight as they are wasting their time plowing and then the wind fills the road right back in behind them. Tomorrow is the Math ELA tests at school. We'll see what the day brings.
I am sooo exicted I finally got a bedroom set!!! It was a Oak wall unit in the paper on Sunday and Chris went to look at it and loves it. So we are busy trying to schedule putting in a new rug in our room before we have to pick up the bed set. Yeah Yeah!! I told Chris - like stereos and ampliphiers excite him - a 'new' bedroom set excites me - expecially since our set now consists of just a mattress and two very very old dressers that are falling apart!
So good day for all LOL!
Have a good night!
Saturday, March 3, 2007 5:30 PM CST
All is going well. Owen's counts have come back so he is off the antibiotics and back to 'normal'. He will also be able to return to school Monday until his next inpatient. I have to confirm this as I thought it was March 16th, but the doc told Chris on Friday to check counts on Thursday with admit on Friday (the 9th) if he passes.
Last night Owen went to the mall with Pam and Sam Walawender to walk... but Owen and Sam mostly sat and played gameboys! Too much exercise for Owen LOL!!
Today we went to Nucor's Family bowling tournament and had a good time. The boys loved bowling, although all the video machines proved a little bit of an issue - expecially when Jake saw the crane machine!!! So after finishing bowling we let the play a couple. It was bumper bowling so that helps the boys (and me)!! Jake even got a 99!!! The boys all got Tropheys and were just proud as can be going up to get them.
Owen is off with the Walawenders to see Bridge to Terabithia. Tomorrow he has tutoring with Miss Heath and we can surprise her with the news of the return to school. Owen is very excited!
Thursday, March 1, 2007 7:02 PM CST
Good days continue! Yesterday I took Ty and Jake to Family swim night. Owen was bumming but he couldn't go due to low counts and the germ filled pool is too much. Next time Owen! Tyler and Jake had a blast. Jake was busy all night showing me how well he can swim, jump and dive. What a difference in Jake - from the terrified little pool boy to a swimming champ! Tyler hasn't missed a beat with his swimming.. he was loving going under water and couldn't give enough. We had races and took turns doing tricks under water. It was a great night!
We arrived home to find we have additions to our family! Owen and Chris went shopping and came home with 2 lovebirds! They are beautiful... just not sure how excited I am about birds yet. They haven't been real noisy and all the boys love them... today... I just had to clarify these were NOT my new chore... yeah we'll see they are all volunteering to take care of them.
We still have not replaced spidey (the lizard) and at this point I don't think we will. It has been like 3 weeks and Owen hasn't even noticed... so you can tell how much he takes care of him!
Owen is back getting tutored so that is nice. He is working on his ELA's this week. I had Tyler's Parent/teacher conference today and we set some goals to accomplish for him (site words, social behavior, math and handwriting) and went over some strategies to work on at home for accomplishing some things outside of his IEP goals. #1 is potty training - oh it will be so nice to get him there. Mrs. Richards made me a nice 'french fry' incentive sheet. He has to go on the toilet 5 times and then we will go to McDonalds. I showed it to Ty and and told him and he quickly said 'OK'... hmmm sounds to easy.
Off to my night of TV- Survivor - it is my one rule for having a ME night!
I don't have the locker room pictures yet... they are on Dad and Leannes camera and they are busy enjoying the sun of Floriday so it will be a few more days till I add them to the slide show.
Have a good night.
Wednesday, February 28, 2007 12:19 AM CST
Okay my computer has been down and Chris found a bad wire outside today so we are back up and running. First I will update on the medical front and then off to the game..
Yesterday was a marathon doctor day. Tyler and I left at 8am for the ENT. His hearing is remaining stable however his wax buildup is getting worse. He is on drops for the next 2 weeks. On 3/12 he will return and the doc will remove the hopefully softened wax under a microscope and then his hearing will be re-evaluated. We then headed to University Hospital to drop off Owen's blood. Just as we were getting close to home I got the call that Owen needed patelets - he was only 6, and to come in after his
Orthopedic appointment. So I dropped Ty off and picked Owen up and back to the other side of Syracuse to Manlius. the Orthopedic doctor said Owen has mild bone loss and that is to be expected. He does NOT have AVN. She is recommending not to hold any medications (ie. steroids) and continue his normal protocol. she did however want xrays of his lower legs as most of his pain lately has been in his ankles and shins. The MRI / Dexascan focussed on his hips and knees.
Back to University - received the platelets and then down to X-Ray. Owen has .2 WBC and no Neutrophils so he is at 0 ANC. He does have monocytes (39percent) so generally that means his system is rebuilding and he should start recovering. Finally able to head home... we arrived home at 7pm. I was totally burnt out... Jake was suppose to have Fospa at 6:30, but with Tyler there to get a sitter for one for 1/2 hour just wasn't worth it! So Chris didn't take him and i was ready to relax and when I got home!
Now on to the game...
Wow it was a night of excitement at the SU game, and one we will never forget! First I want to thank Miss Heath - Owen's teacher who got this whole night rolling. Thankyou to HCL Properties Group who put together the package for Owen and WOW what a package!
The night started going through the Stadium Operations door and meeting Steve Webster and Mike Mettico from HCL Properties. We also met a couple of verteran families from University's 5C's clinic. (Forgive me if I don't remember everyone's full names it was a night of meeting people!) We met Guy whose child had ALL and is doing great, and Sue C. who has a 20 year who had BOTH the AML and ALL like Owen, as well as Down Syndrome!!! I wish I got to talk to Sue more, it is so rare to meet someone with the mixed leukemia and she said we were the first she had ever met!
Next Stan Kissel (Director of Basketball Operations) came in to give us our tickets. Owen and I would be in one area and Chris and Leanne in another. Steve took us to our seats and I was shaking... we were sitting in the COURTSIDE seats - front row under the SU basket!!! Stan came and took Owen back into the locker room to meet the players before the game and he received a game book which he was then able to have the SU players sign while he was in the locker room! Steve and I chatted about our 4 year olds and how they 'test' the waters daily LOL!!! Owen
returned with the Nike head & wrist bands worn by so many of the players. I asked Steve how we got courtside seats with them always filled - our seats were Julie Boheims!!! She then came over to say hello and give Owen a hug. What a nice lady... she introduced us to her friend Amy who would be sitting behind us. Julie told Owen he could go out and clean the floor during the time outs and Amy's son would let him know when he could!
Next to Owen sat Darryl Gross the SU athletic director. SUPER nice. He talked to Owen the whole game and continually gave him high fives. Before the game started the Dance team stood right in front of us, so Owen was in his glory. He was all shy when I asked him if he wanted his picture with them... but they heard me and motioned for Owen to jump right up there with them.
Sean McDonough from ESPN came over to say hi, this is just incredible!! We could see Lawrence Motum and Leo Rautins from where we were sitting. We just had the whole world in view! The game started and it was the game of all games!
It is amazing how hard these guys are playing. You can really see it being right there and how hard they hit each other and the floor! The refs would give Owen the ball to hang onto during timeouts! He was just beaming - they told him he was Jim Boheims 'special guest' of the evening. He got to go out twice to mop the floor during timeouts. Amy laughed saying he worked harder than the boys payed to do it! I told her this was the hardest Owen has worked in a long time! A couple of times the ball came out of bounds right into the courtside seats with the
players charging it down... Owen was so excited.. it was little too close for me!
At half time we headed to the Hospitality room. It was filled with food and drink - no charge! Their was still a line at the bathroom in this private area- guess you don't escape that! Owen didn't want to wait - still too much to see, so as we were headed back into the court area the security gurard stopped us and brought us to a private bathroom for us to use! On the way back to our seats I met another woman - Deb from Canasota who the Boheims had
taken under their wing as well. Her child had a form of neuroblastoma and unfortunately earned his angel wings. It is amazing how many families the SU organization has touched and helped!
Back to the 2nd half and SU was on a roll. They just did everything right and played well, they were pulling away from Georgetown. The night just couldn't go any better. The security gurard came over with about 5 minutes left to warn us that the students would be rushing the floor after the game and we need to just move forward and not try and fight the crowd. I told Owen to run to the basketball pole and hold on tight. He thought it
would be fun to be in the rush - I said no it won't
these kids will be going hog wild and will not even
know they ran you over... get to the base of the basket quick! But with a little over a minute left the security returned to take us out of there, so not to risk Owen getting hurt. They took us down to the hallway in front of the locker room to wait for the team. We were hanging with Boheims boys and Amy's son (JUlie B. friend).
At the buzzer the students STORMED the court! Good thing we were not there... they said our chairs were pushed to the floor and nothing was left standing! Pretty soon down came the players and high fived the kids as they darted into the locker room. Eric Devendorf came a little bit after the initial rush and stopped to give Owen a pat on the head and big high five!
After talking with the team a minute, Stan Kissel came back out to get Owen to go in the locker room. I was not allowed... don't know why... I have been in the boys locker room before :-)
I had kept trying to call Chris to come down before the game ended as I knew they were going in and he would be able to go... but he never heard his phone.. so that was a bummer.
Owen was in the locker room a good 25 minutes. He talked with the players, watched them get medical attention - he said Devendorf had to get a bunch of cuts on his legs taken care of. I then realized in our rush to get out of our seats that I left the autographed book in our chairs. Stan said not a problem, he would get
another one and mail it to us. Darryl Gross invited Owen to come watch practice anytime, and gave me a big hug. The hospitality of this organization was just amazing!
Finally it was time to head out... we had to leave back through the security entrance we entered. It is a double pressure door. So one door has to be shut prior to the other being opened. My head was just a whirl. Owen wants to do this again!!! Yes it was a dream come true.
THANKYOU TO EVERYONE FOR MAKING THIS A TRULY WONDERFUL NIGHT AND WE ARE SO EXCITED TO HAVE HAD THIS OPPORTUNITY TO EXPERIENCE SU FROM THE INSIDE!!!
Watched a tape of the game and there are glimpses of Owen and I here and there, but unless you know exactly where we are sitting and wearing it is very hard to make us out.
I will be posting lots of pictures of our night over the next several days.
Sunday, February 25, 2007
Another good day. Owen had a blast with Thomas over. He was having alot of bone pain last night but that is normal with his low counts plus having had the neulasta shot is also prone to bone pain.
I did take Tyler to the doctors and he was given another 10 day antibiotic with 1 refill if I need it!!! I love it when I get a doctor that is use to Tyler and knows him. I said it is standard for him to need 2 doses of the antibiotic and she said she was giving me the 20 just in case, especially with Owen at home. So hopefully we can kick this congestion to the curb for good. With the 20 days we may even make it to no more this season!
We actually spend 2 1/2 hours outside today! It was alot warmer today and no wind so that helped. We worked some more on the snow fort, I am using a bucket for the walls - it is a lot more stable now. A great tip from the Walawender group! Thanks! Ty and Jake loved going down the slide as they would go right into a big drift! They were climbing up all the snow piles and thrilled with how high up they were. Daddy and I took turns taking the boys for rides on the snowmobile. Owen and Jake like it but Tyler LOVES it. He is grinning ear to ear and the faster the better. "Again, Again.. " he chants the whole time.
I was thinking of taking them sledding at the high school but then Chris asked me if Owen could due to platelets... oh yeah... sledding is a no. He needs to have at least 75 to do anything he can get hurt at due to blood clotting is not easy under 75. So even though he could get hurt at snowmobiling Owen likes us to go slow so it is just a leisurely ride and we figured chances were slim. He was pretty bummed when I said he couldn't go sledding after I had opened my mouth about it. We should be able to get some sledding in before winter ends...
I don't need to do blood until Tuesday. He has an appointment with the orthopedic surgeon on tuesday as well. Tyler has an appointment with the ENT on tuesday so looks like a full day. The plan is drop the blood at University Hospital, this way they can do a Type and Cross incase he does need blood / platelets later this week it will be done. I think it is like 48 or 60 hours a Type and Cross is good for. This is a test to determine the exact composition of his blood /platelets that he is in need of. After that Tyler will see the ENT. Back to school for Tyler, pick up Owen and off to his 1:30 appt in Marcellus. Sounds like a fun day!
Owen is getting very excited about the SU game and wondering what is in store for him!!! Aren't we all!!!
Have a good night.
Wednesday, February 28, 2007 11:23 AM CST
Ok my computer has been down!!! Of all times! Chris did find a bad wire outside and it is back up and running again. So first lets clean out the medical stuff then on to the game...
Yesterday was a marathon doctor day. I left at 8am with Tyler for his ENT appt and hearing evaluation. he is on drops the next 2 weeks, then he will return on 3/12. The doctor will first clean out the was built up under a microscope and then we will reevaluate his hearing again. He is remaining the same - but it has been awhile since his ears have been totally cleaned out. We then went to University hospital to drop off Owen's blood and headed home. I picked Owen up at noon to head BACK - past syracuse to Manlius for his Orthopedic Surgeon visit. She felt his bone loss is 'normal' for the treatments he is on and not at a loss great enough to hold any of the medicatiosn (ie. steroids) he will recieve. She did want so more xrays of his lower legs since that seems to be where his pain is mainly now vs his hips. Owen then had to go to University for a platelet transfusion, and then finally down to X-ray. We arrived back home at 7pm!! 11 hours I was in the car and I was burnt out!!! Owen was too after being there from 12-7! He still has no immune system but has lots of monocytes which means his system is getting ready to start rebounding.
Now off to the Game...
Wow it was a night of excitement at the SU game, and one we will never forget! First I want to thank Miss Heath - Owen's teacher who got this whole night rolling. Thankyou to HCL Properties Group who put together the package for Owen and WOW what a package!
The night started going through the Stadium Operations door and meeting Steve Webster and Mike Mettico from HCL Properties. We also met a couple of verteran families from University's 5C's clinic. (Forgive me if I don't remember everyone's full names it was a night of meeting people!) We met Guy whose child had ALL and is doing great, and Sue C. who has a 20 year who had BOTH the AML and ALL like Owen, as well as Down Syndrome!!! I wish I got to talk to Sue more, it is so rare to meet someone with the mixed leukemia and she said we were the first she had ever met!
Next Stan Kissel (Director of Basketball Operations) came in to give us our tickets. Owen and I would be in one area and Chris and Leanne in another. Steve took us to our seats and I was shaking... we were sitting in the COURTSIDE seats - front row under the SU basket!!! Stan came and took Owen back into the locker room to meet the players before the game and he received a game book which he was then able to have the SU players sign while he was in the locker room! Steve and I chatted about our 4 year olds and how they 'test' the waters daily LOL!!! Owen returned with the Nike head & wrist bands worn by so many of the players.
I asked Steve how we got courtside seats with them always filled - our seats were Julie Boheims!!! She then came over to say hello and give Owen a hug. What a nice lady... she introduced us to her friend Amy who would be sitting behind us. Julie told Owen he could go out and clean the floor during the time outs and Amy's son would let him know when he could! Next to Owen sat Darryl Gross the SU athletic director. SUPER nice. He talked to Owen the whole game and continually gave him high fives.
Before the game started the Dance team stood right in front of us, so Owen was in his glory. He was all shy when I asked him if he wanted his picture with them... but they heard me and motioned for Owen to jump right up there with them.
Sean McDonough from ESPN came over to say hi, this is just incredible!! We could see Lawrence Motum and Leo Rautins from where we were sitting. We just had the whole world in view!
The game started and it was the game of all games! It is amazing how hard these guys are playing. You can really see it being right there and how hard they hit each other and the floor! The refs would give Owen the ball to hang onto during timeouts! He was just beaming - they told him he was Jim Boheims 'special guest' of the evening. He got to go out twice to mop the floor during timeouts. Amy laughed saying he worked harder than the boys payed to do it! I told her this was the hardest Owen has worked in a long time! A couple of times the ball came out of bounds right into the courtside seats with the players charging it down... Owen was so excited.. it was little too close for me!
At half time we headed to the Hospitality room. It was filled with food and drink - no charge! Thier was still a line at the bathroom in this private area- guess you don't escape that! Owen didn't want to wait - still too much to see, so as we were headed back into the court area the security gurard stopped us and brought us to a private bathroom for us to use! On the way back to our seats I met another woman - Deb from Canasota who the Boheims had taken under their wing as well. Her child had a form of neuroblastoma and unfortunately earned his angel wings. It is amazing how many families the SU organization has touched and helped!
Back to the 2nd half and SU was on a roll. They just did everything right and played well, they were pulling away from Georgetown. The night just couldn't go any better. The security gurard came over with about 5 minutes left to warn us that the students would be rushing the floor after the game and we need to just move forward and not try and fight the crowd. I told Owen to run to the basketball pole and hold on tight. He thought it would be fun to be in the rush - I said no it won't these kids will be going hog wild and will not even know they ran you over... get to the base of the basket quick! But with a little over a minute left the security returned to take us out of there, so not to risk Owen getting hurt. They took us down to the hallway in front of the locker room to wait for the team. We were hanging with Boheims boys and Amy's son (JUlie B. friend).
At the buzzer the students STORMED the court! Good thing we were not there... they said our chairs were pushed to the floor and nothing was left standing! Pretty soon down came the players and high fived the kids as they darted into the locker room. Eric Devendorf came a little bit after the initial rush and stopped to give Owen a pat on the head and big high five!
After talking with the team a minute, Stan Kissel came back out to get Owen to go in the locker room. I was not allowed... don't know why... I have been in the boys locker room before :-)
I had kept trying to call Chris to come down before the game ended as I knew they were going in and he would be able to go... but he never heard his phone.. so that was a bummer. Owen was in the locker room a good 20 minutes. He talked with the players, watched them get medical attention - he said Devendorf had to get a bunch of cuts on his legs taken care of. I then realized in our rush to get out of our seats that I left the autographed book in our chairs. Stan said not a problem, he would get another one and mail it to us. Darryl Gross invited Owen to come watch practice anytime, and gave me a big hug. The hospitality of this organization was just amazing!
Finally it was time to head out... we had to leave back through the security entrance we entered. It is a double pressure door. So one door has to be shut prior to the other being opened. My head was just a whirl. Owen wants to do this again!!! Yes it was a dream come true.
THANKYOU TO EVERYONE FOR MAKING THIS A TRULY WONDERFUL NIGHT AND WE ARE SO EXCITED TO HAVE HAD THIS OPPORTUNITY TO EXPERIENCE SU FROM THE INSIDE!!!
I will be adding the locker room pictures to the slideshow as soon as I can.
Sunday, February 25, 2007
Another good day. Owen had a blast with Thomas over. He was having alot of bone pain last night but that is normal with his low counts plus having had the neulasta shot is also prone to bone pain.
I did take Tyler to the doctors and he was given another 10 day antibiotic with 1 refill if I need it!!! I love it when I get a doctor that is use to Tyler and knows him. I said it is standard for him to need 2 doses of the antibiotic and she said she was giving me the 20 just in case, especially with Owen at home. So hopefully we can kick this congestion to the curb for good. With the 20 days we may even make it to no more this season!
We actually spend 2 1/2 hours outside today! It was alot warmer today and no wind so that helped. We worked some more on the snow fort, I am using a bucket for the walls - it is a lot more stable now. A great tip from the Walawender group! Thanks! Ty and Jake loved going down the slide as they would go right into a big drift! They were climbing up all the snow piles and thrilled with how high up they were. Daddy and I took turns taking the boys for rides on the snowmobile. Owen and Jake like it but Tyler LOVES it. He is grinning ear to ear and the faster the better. "Again, Again.. " he chants the whole time.
I was thinking of taking them sledding at the high school but then Chris asked me if Owen could due to platelets... oh yeah... sledding is a no. He needs to have at least 75 to do anything he can get hurt at due to blood clotting is not easy under 75. So even though he could get hurt at snowmobiling Owen likes us to go slow so it is just a leisurely ride and we figured chances were slim. He was pretty bummed when I said he couldn't go sledding after I had opened my mouth about it. We should be able to get some sledding in before winter ends...
I don't need to do blood until Tuesday. He has an appointment with the orthopedic surgeon on tuesday as well. Tyler has an appointment with the ENT on tuesday so looks like a full day. The plan is drop the blood at University Hospital, this way they can do a Type and Cross incase he does need blood / platelets later this week it will be done. I think it is like 48 or 60 hours a Type and Cross is good for. This is a test to determine the exact composition of his blood /platelets that he is in need of. After that Tyler will see the ENT. Back to school for Tyler, pick up Owen and off to his 1:30 appt in Marcellus. Sounds like a fun day!
Owen is getting very excited about the SU game and wondering what is in store for him!!! Aren't we all!!!
Have a good night.
Saturday, February 24, 2007 8:02 PM CST
Click on the link above and enter your name on Owen's Buddy Map!
It was a good day. Tyler went to Anna's house - his counselor from Freedom Camp and had a blast. They watched movies, played V-tech and then Tyler had a ball with their cat. Thankyou Anna for a fun day for Tyler!
Jake, Owen and I went out to play in the snow. We attempted to build a snow fort but our wall kept tipping over. I think we need to do a double wall of blocks (we have a plastic block maker) to make it more stable. So then we built a snowman. Both boys were bright red faces and ready to come in. We were outside a little over an hour. I told Owen how when I was his age I would be outside all morning come in for lunch and then be out again all afternoon! He thinks I was crazy - it is too cold to be out that long! Kids just have too much stuff inside to create that desire to stay out I think!
Thomas came over late afternoon and is going to spend the night. I told them here is their 2nd chance - no 5am this time or it will be even LONGER before there is another sleep over. Owen got sick after eating dinner. What a difference it makes to have a friend here - he was like I'm fine, Lasagna just didn't sit right in my tummy, lets play... Thomas told him he should brush his teeth because otherwise the throw up would turn to plaque which isn't good. He was right in there brushing them - "How come you didn't know that Mom?" Hmmmm because I yell at you a 100 times a day to brush your teeth due to all the meds your on that will also rot your teeth and that doesn't seem to matter!! I'll have to have Thomas call him a few times a day to brush his teeth - that works better! LOL!!!
Poor Tyler is back to a very runny nose, although he seems to be feeling fine. Today was really bad, so I think I will try to get him in the docs tomorrow and BEG for antibiotics. He generally takes 2 doses to get over these infections.
Have a good night!!!
Friday, February 23, 2007 6:31 PM CST
Owen's system has crashed. He went from 2.9 WBC on Wednesday to .4 today! So his ANC is around 300 so he is at the <500 mark and we need to be careful to his exposure. He started on the IV antibiotic Vanco tonight and 2 oral antibiotics Cipro and Vorconyzol. He also had to go get platelets today as he was only 14 (they transfuse at 20). With all that being said the big question is the game monday.... so I talked to Zarina about whether he should go or not. Absolutely he should go she said. As long as he is feeling good he should go but we definately need to bring purell and use it often. I know I spoke with the head Onocologist at Rochester before about it and the immune system <500 for a child on standard leukemia protocol is different than a child <500 after a bone marrow transplant. Although they still need precautions they are not in the very secure bubble that a transplant child should be. So I guess I am feeling ok about taking him. It will be so much fun for him and I hate to take away yet another highlight in his life. So yes we will take him... the good thing is he will have 3 days of the antibiotics in his system to help him fight off infection.
I went to Andrew Sleeths wake tonight. My stomach was in knots the second I got in the car and started the drive to Syracuse. I knew I needed to go though. It was just something I needed to do. I arrived and it was a blessing to see Missy and Janice - 2 nurses from 5C and I was right in line with them which helped to calm my nerves during the wait in line. I did ok until I got near the casket and I felt my stomach just twirling and my eyes welling with tears. Janice asked if I wanted to go ahead of her to be between her and Missy, but I was okay. It was just heartbreaking looking at Andrew. He was such a good kid and I really enjoyed his and his mom Karas company at University. Kara and Danny are amazing people. They were in good spirits and talking and laughing and we talked of how it would have been nice to see each other again and let the boys play. They have been in Rochester for a while now so we have not seen them. Danny gave me a big hug and said you know what... CANCER SUCKS! Yes it does! They have a hard day tomorrow as it is the funeral so please keep them in your thoughts and prayers. Missy and Janice were waiting for me to finish talking to make sure I was okay to leave - bless your hearts girls!!! You are sweethearts to be there for me, Thank you!!!
Have a good night and give all of your loved ones a big hug tonight, life is too short and precious to not enjoy every minute of it!!!
Thursday, February 22, 2007 8:01 PM CST
I put an updated schedule on the site today - with the many delays Owen has had I needed to post a more current one or where he has been and what is left...
Today was a good day for Owen. He had a 'surprise visitor' coming today to present him with his SU game package. Miss Heath his teacher arranged through a friends corporation to have a special day for Owen at an SU game. I can't remember the corporation name she said - but I will definately find it out again as Owen has some big thankyou notes to write!
Owen was beside himself as I told him before I left for work that I would be coming home for his surprise. But I wouldn't tell him much more than that. At noon Mike arrived... He told Owen he would be going to the game on Monday... he brought him an SU hat and a D'Nic basketball jersey. Owen needs to wear the jersey and make sure he has his basketball sneakers on and is ready to go! But that was all he would let Owen know for today. The rest would be all surprises... so now we are ALL wondering just what is in store! We need to be at the dome at 6:00 (game is at 7). So looks like a lot of pre-fun before the game even begins! Owen is very excited and is 'hoping' he gets to meet the team- especially Eric Devendorf. Meeting the cheerleaders and dance team wouldn't be bad either... Mike laughed as Owen smirked over the girls so he said he would see what he could do... maybe Owen could help them build a pyramid..
So Owen is very excited ( me too!!!)
Owen went over to Dan's house this afternoon so he has a pretty good day.
My cousin Missy picked up Tyler and Jake today to have a special day at McDonalds with her daughter Mackenzie. They had a great time - a little trouble convincing Tyler it was time to leave though! Thankyou Missy, Aunt Sue and Mackenzie!!! tyler couldn't wait to tell me when I got home. "Mama, Mama - I eat french fries, McDonalds, went in" Little broken sentence but sentence just same. I said you did?? "Yeah - IN!" He was jumping up and down. The "IN" means - he actually got to go in and play. Mommy doesn't like to hang out inside McD's - I do drive throug - so he was very happy to go AND get to play. He was too cute!
I wanted to have some time off this week with the kids off school but with a big project going on at work I haven't even been able to get an afternoon off... oh well April vacation will be better anyways when the weather is better and more to do.
Have a good night!
Wednesday, February 21, 2007 5:13 AM CST
Owen continues to do well. He received blood today although it had not dropped from the 8.3 it was yesterday. But since Chris and Owen had gone over they transfused him anyway since they figure he is due to drop any time. I have to test his blood again on friday - they are expecting him to need a platelette transfusion by then. Otherwise all is well and we are enjoying it. He has not dropped enough to start antibiotics yet... he is holding his own!
Have a good night!
****Morning **************************
All is well. Owen was up early and did some homework and then went to his friend Dan's house to play. He came home all smiles - he so needed that!!!!
His ANC is still great (over 2000) but his hemoglobin was 8.3 so he will go today for a blood transfusion. We are keeping our fingers crossed that he doesn't hit rock bottome before monday - the SU vs Georgetown game. His teacher Miss Heath got him special tickets through a friend's corporation and it sounds like there is a LOT more involved than just seats by the court!!! I will let you all know as we findout more but mum is the word to Owen. I told him if he is semi-good he can go but I will be bringing my clorox wipes and lots of Purell so I may be embarrassing to him LOL! He says he doesn't care he just wants to go.
Tyler's nose has started to run again - arghhhh!!! He is back on cold medicine and we will see if it starts to clear or he will be back to the docs. They had said if it returned they may do a sinus xray.
Have a good day!
Monday, February 19, 2007 9:00
****Monday Evening *****************
All is well and we are home! Arrived home around 1. We had headed out at 10:30 but just as we were getting off 690 Chris called to say Zarina called trying to catch us to get Owen's Neulasta shot today instead of coming back on Tuesday for it. The neulasta shot is the shot that helps helps Owens Immune system come back faster after getting the ARA-C. We opted for turning around and going back since we were only 15 minutes away. I should say I opted... Owen started crying he just wanted to go home. But eventually he agreed it was best he just didn't want to get the shot, and since that wasn't an option...
Tomorrow I will do blood counts in the morning to see where he is at. Last time he crashed right away due to being so sick in the hospital so I imagine he will this time too. As soon as his ANC is below 500 he will start the IV antibiotic Vanco and then the 2 oral Cipro, and Vorconazol at home.
The boys were very happy to see me and after a while of battling for my attention and each wanting me things settled down. Jake, Tyler and I went outside to build a snowman. The snow is not good packing snow though so the snowman was a bust. So I got out the sled. That was hard too with the deep snow as they couldn't walk in it and I had to lug them up and down the hill, thank goodness it is just a little one. Daddy came out and took Ty for a ride on the snowmobile - grinning ear to ear (both of them LOL). Then Daddy got the rope and hooked the sled up to the back of the sled. Jake wasn't so sure "I don't think THIS is a good idea..." The three of us hopped on and after a shot romp around the yard we decided the rope would hold and he took us out in the field. Jake was happy now "IT IS a good idea!!" Tyler was just shreeking with delight. There was about 15 turkeys in the back corner and we were able to come within 20 feet of them before they took off so that was even more excitement. After two times around the field Jake was done and Ty was yelling for more. However both of their faces were covered in snow and we didn't need them to start freezing!!! Once we stopped and came in they were both happy to be in the warmth again.
Owen is feeling great, hard to believe it is the same kid from this weekend. Like the doc said the good thing about this chemo is - its hits them HARD and then its done. The good thing to me about this chemo is its DONE DONE DONE!! I can start breathing again and relaxing, I was feeling the stress of this one coming on. I swear my head was not into anything. People at work would say 'I told you that..' Chris would say 'I told you that.." I just wasn't paying attention to anything!!! My head was not in the game!
Owen has 3 weeks off now to let his immune system come back and then his LAST inpatient will be on March 16th if we stay on schedule. Then we can celebrate entering the maintenance phase. But we still need to get through the next 3 weeks with no fevers so back to.. one day at a time...
Have a good night - we are!!!! Its great to be home again!
***Monday Morning: *******************
It was a relatively quiet night. Owen did spike back up to a fever once 38.9 (102), but the tylenol brought it down and it has not returned. He woke up twice due to leaking a little and I had to change his pants and bed liner, but he didn't want to go back in the depends.
He woke up this worning again due to leaking, but seems to be feeling pretty good. I am going to see about another imodium though. He just asked me when we could go home. I asked him if he was ready and he said yes - he felt stronger today not so weak. I told him then the key was to start drinking so that they could remove the IV fluids. He said he was afraid to drink because he didn't want to start throwing up again. So I explained that little sips were good and now the chemo is far a way and shouldn't make him throw up anymore. So he is working at a glass of water now.
Baby steps are good.... hopefully my next update will say we are home!
Sunday, February 18, 2007 1:21 PM CST
The medicine worked to stop Owen from throwing up all night. He went from 6pm to 6am without throwing up. However the diahrea started. He started to wear depends because he could not control it. So he was up several times during the night to get these changed. He continued to have the high fevers through the night.
His last fever (fingers crossed) was at 9am, it was 40 (104). At 11:00 it was 37.5 (99.5) back to normal!!! Hopefully it will stay here. He has not had a non-fever temp since Friday afternoon. He has been awake for brief periods today and he managed to take a quick tub this morning. With all the diahrea he needed to get in the tub. Even that has calmed down ( with the help of imodium ) He asked to be put back in regular underwear at 2 since he hasn't had any accidents for a couple hours. So baby steps.
Missy and Mackenzie came up to visit for a while and Owen managed a few smiles and even talked for a little bit before falling back asleep. Thanks for the visit - I enjoyed it!!! It has been very quiet here with Owen sleeping 90 f the time.
He is not eating or drinking which is the big concern now. He will continue to make steps to feeling better as the day goes on but he needs to be able to keep his body hydrated once the IV fluids are turned off. Most likely we will be here another night to allow his body time to recover and for him to start functioning again.
At 5am this morning his IV pump was going off as the chemo finished and I was changing Owen's pants. I said "Owen - hear that? Know what that is?" He shakes his head no, and I tell him - "That is the LAST time you will get ARA-C!!! Now you just need to get better and we can leave ARA-C behind forever" I got a mumbled response but I was sooo happy to hear the finish bell!
So the plan is to continue to watch him today. He he begins to really turn around and feels up to going home ( I doubt it) they will release us, otherwise sometime tomorrow. I will do blood counts on Wednesday and he should probably be close to bottoming out already. With his system having the fevers for days he will probably crash fast. I think I will ask them to do one in the morning just to give me a base line - he may even already be crashed - he was last time when they discharged us after ARA-C.
Keep Owen in your thoughts and that he gets stronger and stronger.... on the road to recovery.
Saturday, February 17, 2007 6:41 AM CST
*****Evening UPdate: ****************
Today did not get any better. Owen slept most of the day with brief periods of being awake. Generally when he was awake he would end of throwing up. Several different anti-nausea medicines were tried but he continued to throw up every couple of hours. His fevers have never gone away - the highest going to 40.2 (104.3) He is not going to the bathroom much dispite the fluids being pumped into him. They did just give him anther anti-nausea medicine which would make him 'very loopy' but should stop the vomitting. HIs vomit is so full of bile that we need to stop him from vomitting so much. I figured he has been asleep all day anyway so it didn't really matter if the medicine now makes him sleep... at least he will get some peace from the vomitting.
Keep Owen in your prayers and hope that tomorrow will be a new day. His last dose of ARA-C will be at 2am. His LAST DOSE EVER of this chemo!!!!!!
*****Morning UPdate: ****************
I hate ARA-C!!!!!
Owen was great yesterday he was feeling full of himself, giving the nurses a hard time and just wonderful. I left to go get our 'free' dinner from Texas Roadhouse from when the messed up our order. Owen was drooling over the thought of his ribs. I walked back in the door and he had the look of pain.... his stomach didn't feel good... he couldn't eat. He fell asleep a few minutes later and slept until 9 and was only awake for about 20 minutes. Long enough to throw up twice. He was given an benedryl and he was back asleep. He then woke up in the middle of the night throwing up. The nurse got him Zofran this time and put an anti-nausea patch behind his ear. We have never tried this before but are willing to try it!!! At 4:30am Owen spiked a fever 39.2 (102.6). They drew cultures but most likely it is from the ARA-C and no bacteria infections. He just woke up now throwing up a gain and his fever is back up - it is 39.4 now (103) Owen's wife Brooke is working today so hopefully that will put a bright spot in his day.
Andrew Sleeth earned his Angel Wings early this morning. Please keep the Sleeth family in your thoughts and prayers. The Sleeths were from Syracuse and we enjoyed their company many times on 7H. Owen joined in on many of their family board games while they were staying here and they welcomed Owen with open arms. Andrew is at peace now and as his mom Kara said - Andrew WON his battle with Cancer and is with Jesus now. "No more cancer, no more medicine, no more eating and drinking, no more having to get up and walk, no more showers,....he is perfect!"
I will let you know how the day goes .... but so far it sucks in every direction!
Friday, February 16, 2007 1:13 PM CST
Room 7604 and phone is 464-3683 - I also posted it below.
Owen passed counts and he is being admitted- yeah!!!!! It was a very rough drive in. Just past Jordan Elbridge the weather was horrible. There was so much snow on the roads, it was very slow going and I wasn't sure we were going to make a couple of the hills! We were late - arriving around 10:30, but then the therapist had cancelled due to the weather. I told the nurses and docs - PLEASE let Owen be good enough to start - I don't want to drive home!!!
About 11 the counts were there and he was 840 (had to be 750) so he was good! We headed to the cafeteria for lunch while they alerted 7H that he was go and they could get the room ready. Since Owen has to have the private room it takes a little bit of moving around and cleaning of the rooms to get ready for him. They don't do it ahead of time due to never knowing if he will come, since he is a week delayed.
We got in the room about 1:30 and they started ARA-C chemo at 2. It runs for 3 hours every 12 hours. (so 2pm,2am,2pm,2am) and then 6 hours after the last so 8am Sunday he will get the Aspariginase shots and we will be able to head home late morning. Fingers crossed this all goes well this time with no fevers!!! I had thought he got [re-hydrated for this chemo as well but it is only the Methotrexate.
I will keep you informed - heres hoping for a smooth visit....
Thursday, February 15, 2007 6:58 PM CST
All is well - not much to report. Tyler didn't have school again today due to the cold weather and Jake was an hour delay.
When I got home Jake was looking hopeful to go outside and build a snowman... not yet Jake. Two reasons - the snow is over your head! and it was still freezing out with the wind whipping around at our house. So either this weekend or next week.
Keep your fingers crosses that Owen is good enough to be admitted tomorrow!!!! He is a week delayed now, and while we need his system to be strong enough for the chemo, we don't want him delayed too long and give the leukemia a window to sneak in.
I will take Owen's blood in the morning and drop it off on the way to Syracuse for his therapy session. We'll stop by 5C after and hopefully there will be good news!!!
Have a good night!
Wednesday, February 14, 2007
I hope everyone got unburied today okay. We sure did get dumped on! There was a little over a foot this morning as I 'tried' to go to work. I was up and prepared to leave early. I drew Owen's blood at 7 and was out the door. The snow looked very light and powdery so I could just 'plow' through it with the van I figure. Yeah well after several back and forth into the garage and out I made it back 15 feet but as soon as I had to turn the van to cut the corner I was stuck! I stepped out of the van and the snow was over my boot. In the house I go to wake up Chris and have him snow blow the driveway. There was about 3-4 feet built up at the end of the driveway from plows during the night. However it had been some time since one had been by since there was about 6 or 7 inches in the road. Chris came back in and said I wasn't going anywhere still because I wouldn't make it down Sloan Road till a plow came by.
I called 5C and then Auburn Lab to find out if the blood was still good that I took at 7 since it was now 8:30. It was so off I headed.
Alas Owen is still too low. His Hemoglobin and Platelettes look great its just his total ANC. He is still only 250 and needs to be 750. He is considered still neutropenic - so a low immune system (under 500). He had lots of monocytes so hopefully they are kicking in and Friday we will head right up to 7H after his therapy session at 10. Fingers crossed everyone - we WANT to get in and get this chemo over!
We worked on Spelling words for the Spelling bee while Owen was in the shower and he did great! I gave him about 30 words and he missed about 5, but very close on those too. Mostly words he had never heard of.
All else is quiet and we'll see if the kids return to school tomorrow - it is suppose to be FREEZING out, 20 below with wind chill! YIKES. At least it looks like the snow has stopped. I did end up leaving work early, the snow was just not stopping. I needed to stop at the store and Wegmans was deserted!!! It was really nasty out and I was glad I was not driving when it was dark!
Happyp Valentines Day!!!!
Tuesday, February 13, 2007 8:14 PM CST
All is good. Owen feels well and hopefully his counts are good enough to start chemo tomorrow. Course now with the snow storm coming who knows if I can make it to the hospital to drop off his blood! Then to make it to Syracuse too! I just want to start though and get through this ARA-C!!! It is torturing me to keep delaying it. I want this one done and gone and hopefully Owen will never have to get ARA-C again!!!
Jake had FOSPA tonight and had alot of fun. He has missed 2 weeks. First I had an SU game and then last week he was sick so it was nice to get it back. We start to bring home 'homework' for things to work on. We missed the week when you get to trace your child and then cut out the shape and color it in to look like them. So we brought his big paper home tonight and did it at home so we can hang his self-portrait with the others next time. Tyler was all excited too when Jake was being traced. He had to lay on the paper next for me to trace him. They love doing that on the driveway with chalk in the summer time. So we finished Jake and it looks great (he does have green hands though - he didn't like the plain colored hands).
Tyler is continuing to have good days at school so I am really pleased. He still has a little running nose but feels good so hopefully it will all clear up soon.
The snow is falling steady already - lets see if we get those 15 inches tonight! Keep warm and stay inside if you can!
Monday, February 12, 2007 1:54 PM CST
Still waiting.... Owen's platelettes are good (135- need to be 75), but his ANC level is down to 320 and that needs to be 750. He is now considered neutropenic (under 500) and any fevers he will have to go to the hospital. His body does appear to be turning around and they are pretty sure he will be admitted on Wednesday for chemo. So I will retest wednesday morning.
Other than that all is quiet. Tyler and Jake returned to school today. They were both very happy to return and had great days.
Saturday, February 10, 2007 6:39 PM CST
I was up early (5:40)- don't ask me why I can sleep in and I don't - go figure. At 6am Owen woke up crying that his ear hurt. I got him a tylenol and had him go lie back down and I would take him to the pediatrician later. He woke back up at 9 and said he felt fine and didn't want to go to the doctor. Should have listened to my gut with all the sickness in theis house. At 11:45 he was crying in pain again. The pediatrician was now closed so I called the onocologist. Dr. Souid wanted us to come right over to check it out. Owen started feeling better on the way over again. When we arrived he was feeling fine. But as soon as Dr. Souid looked in his ear he saw an infection. It is only in the ear that is bothering him. So he gave us an anitbiotic and we were on our way. This is kind of good in a way. Now everybody is on and antibiotic at the same time and won't be passing this back and forth.
I dropped Owen at Papa Fred's on the way home. He wanted a friend to come over or to go somewhere but I am sure NO ONE wants to send their child to our house right now! And we don't need any more exposure to public germs either. So Papa's was the compromise. It would be some new scenery for Owen and a break from his brothers.
So I can now drive to Syracuse with my eyes shut! I have been there 4 out of the last 5 days and will be returning tomorrow for the SU game.
I called Papa's later and he was just warming the car to bring Owen home. He had started to not feel good, his ear was bothering him again. He is really sensitive to noise for some reason with this. Even a whisper sounds loud to him. He took some tylenol and is feeling better again.
Tylers nose is starting to run a little again but it is almost clear discharge so that is good. Jake still looks pecid. If he weren't on an antibiotic I would have had him at the docs this morning - he got up looking so sick. He seems much better now that he has been up and about. He slept until 10 and then took a 2 hours nap so this is still knocking him down quite a bit.
I still did manage to get a pretty good cleaning of the house done though with being up early so hopefully I have done some damage to the germs hanging about.
Looks like a quiet night...
Friday, February 9, 2007 5:52 PM CST
it was a pretty good day here - yeah we are turning the corner!! Owen and Tyler were both up at 6am - yikes for Grandma! Tyler actually woke up with a clean face vs his normal cakes in 'junk'. Owen did crash on the couch later in the morning for a few hours. Miss Heath came to tutor early afternoon today on a break since they only had a 1/2 day of school. She gave Owen his valentine list and he went right to work to finish them. He is hoping to attend the party but chances are we will be in the hospital that day. So Tylers nose barely ran all day. I think he realizes the medicine is helping as he went to the fridge tonight and got the medicine and brought it to me to take!
Miss Heath had a surprise for us. Her friend has SU seats - about 5 rows up from the floor and was able to give us 4 for the Georgetown game to take Owen if he is able to go that day!!! Owen is soooo excited! He usually doesn't get to go to the Big East games so to go to the last game of the year is really big!!! So fingers crossed Owen will be able to attend. If he gets chemo Monday he should be okay as that is two weeks after. Thankyou thankyou thankyou!!!!
Wow on the guestbook entries today!! Owen was thrilled to see all the school entries! He is really looking forward to finishing up this hard stuff and returning. I think it will make a big difference in Owen.
Have a good night!
Thursday, February 8, 2007 5:55 PM CST
The day started out simple enough. I accessed Owen and drew blood and dropped it at the hospital. At 9am my phone was ringing - Owen needed blood he was only 6.0 and they transfuse at 8. So I headed off home, picked Owen up at 10 and we arrived at 11 just as the snow started to fall. Owen didn't actually start blood until 1:15. That is the draw back of doing blood at home. When we arrive they have to re-draw his blood so they can type and cross it and make sure they have the correct blood mix for him. So unfortunately that takes time. I was so shocked that he needed blood. Usually I can tell as he gets real sluggish and his lips are white as can be. He was real chatty last night and again this morning when he got up. His color looked pretty good to me too. Oh well everytime I think I have this down.... We finished blood by 4:15 and were on the road home at 4:30. Owen is coughing more and more and doc says he looks good no signs of anything yet so he probably has a virus. His counts are not good enough to start the chemo tomorrow though. His platelettes are only 25 and they need to be 75, his ANC is 740 and needs to be 750. He has a WBC of 1.0 but his neutrophils are 72 so that means they are working hard and hopefully his body is coming back up. We will check again on Monday to see if he is ready for chemo. I was sort of relieved as I am dreading this ARA-C but they I want to get it over with too! Perhaps with all the illness in our house this will give everyone a chance to rebound and me a chance to really disinfect this weekend before he starts chemo and crashes. Owen's wife came down to visit him while he was getting blood so that was a nice surprise! Got the results back from the Dexa Scan but will need to have Zarina interpret them for me. They show he is below the average bone loss for a child his age but I am not sure if it is at a concern level. Dr. Souid said it was normal for where he is in treatment, but Dr. Souid tends to tell me not to worry - and I would rather have a better explanation of what the percentage Owen is below the average mean in laymans terms.
Jake didn't get up until noon! Guess he needed his sleep. He seemed in a good mood and feeling good, except he is coughing pretty good. So he will stay home again tomorrow, just give his body time to recover.
Tylers nose ran pretty good all day up till about 4 and has been dry since so looks like he is finally turning. He still is having nasty diahrea's so at this point he will just stay home tomorrow and hopefully next week will be a brand new week to get back on track!
Owen received a nice package of books in the mail from his cousins Ben and Brett (Chrissy and Ben too!) and some to share with his brothers. He got a book on lizards, hope this won't give him any ideas on 'upgrading' to a bigger lizard! Thankyou so much guys!!! We still haven't replaced his lizard Spidey yet and he hasn't noticed. The plan was to do it this weekend when he wasn't here so he didn't catch us bringing a new lizard in. As you can probably tell he doesn't spend a whole lot of time with spidey since he hasn't noticed - it is basically 'my' pet to take care of!!! LOL Just the same we want no trama in his life.
Have a good night!
Wednesday, February 7, 2007 4:49 PM CST
Finally some success! I took Jake and Tyler to the doctors today. The doctor said Tyler is getting to the 9-10 day area where they consider a cold more.. possibly a sinus infection and he was going to prescribe him an antibiotic. Yeah hurray hurray. He said if I wanted to hold off another day or two that was okay but he didn't want me to have to return again. I said - No I will start him right away he is just not getting better. So then he starts to look at Jake. His throat was a little red, and no fever as of right then. He decided to test for Strep anyways and sure enough he was positive! He then looked back at Tyler who had a huge blast coming out of his nose... OH - I would start Tyler right away too on the Antibiotic he says! Yeah - this is how he has been since last Tuesday, not a little stuffy nose! Mark my words by tomorrow afternoon Tyler will have made a HUGE improvement. He just needs that anitbiotic and he clears right up. So unfortunately it means another day of missing school to get to that point...
I asked the doc about doing blood work on Jake. We have been becoming just concerned on Jake. He has been looking pecid for weeks before finally spiking a fever, and has been very tired. He thinks this could have been brewing and took this long to cause a fever and wants to wait and see after he has been on the anitbiotic how he looks. If we are still concerned then we could have blood work, but it would probably show Mono most likely given the symptoms which they do nothing for. GREAT- this is not what I want to hear. Owen had a bunch of Strep throats, and then mono and then.... Leukemia. I will give this antibiotic its turn but if we still have any concerns I will go right to our pediatrician (you just get one of the docs on a non-routine visit if your pediatrician is not available) and talk with her. Hopefully we are all just a little edgy and paranoid
Owen seems to be feeling good. He worked with Miss Tracy today and this seemed to put a bright smile on his face. His teachers visits seem to brighten his day!
Tomorrow I will do blood counts in the morning to make sure Owen is good to go for his chemo on Friday.
Our friends the Sleeths from Syracuse did receive news they did not want to hear. Andrew has again relapsed. He has had 2 transplants in less than a year. They are going to try and invoke Graft VS HOst disease to fight the leukemia. But their options are limited. Please keep them in your thoughts and prayers.
Many people wonder WHY I follow all these families and whether or not it is good for me. YES it is VERY good for me. I have met many wonderful families and have found friendships with people close and far away who KNOW what I am going through. Who truly understand. Don't get me wrong my family and friend support is wonderful but nothing replaces the knowledge of another family dealing with the same thing. On the Parent support group I am on - a new family just joined and their son has the mixed ALL and AML leukemia that Owen had. They were looking for info and direction. How wonderful would that have been for me back 3 years ago to have had that as we ventured into the unknown. I know the risks with following other children but the knowledge I gain far outways it. I can't tell you the number of times that I mention something we are going through and I get an email from someone telling me how they handled it or that they are going through the same thing. It is Networking in the Cancer world and is just as important as Networking on the career front!
Have a good night!!
Tuesday, February 6, 2007 7:26 PM CST
No good changes here... Chris called me around 11 to see if I could take Owen to his Dexa Scan - he was feeling lousy. So I took Owen - first we went to the wrong building. It was at Harrison Center but I guess the University Heath Center is also part of it, which luckily it was just kiddy corner across the street. So we ended up being only a few minutes late. I was so proud when we had arrived at the first place at 1:15 for a 1:30 appt. I am never early!!
The DexaScan only took about 20 minutes. It was very easy. Owen laid on the table and a scanner went over the top of him, then from the side and finally over his hips. Piece of cake! We were out of there and on our way home at 2:20!! I stopped back at work for an hour and Owen 'researched' games on the internet. We headed home and Miss Heath came over for some tutoring. It has been awhile with Owen not feeling good, Miss Heath getting sick.... Owen has been working on things here at home here and there when he feels good. Miss Heath was very happy with how well Owen did with missing tutoring he did as well as the students in school. he got some of the measurements a little mixed up but other wise his math was right on que! Miss Tracy should be coming the next couple of days and then Friday back inpatient.
Tyler's nose was a 'little' better today, however he has had a few diahrea's. Jake was pretty much fever free until an hour ago when he spike 103 (under the arm) and it showed 104 when done through the forehead scanner!!! So Jake is off to the docs tomorrow. That is 3 days in a row for high fevers. Tyler will go along as well. I will go and make sure they understand we need to try something. Tyler has been out of school since last wednesday and you don't miss a week of school for a cold! I need this house germ free by next week when Owen returns from the hospital as his counts will be crashing and a normal illness mixed with the after affects of ARA-C do NOT mix!!!
Owen has a little bit of a stuffy nose and cough so hopefully this is not eating up his immune system to cause us a delay in chemo. He has to have an ANC of 750 to start chemo. Zarina emailed me today. Owen has lost a little bit of weight and his protein levels are a little low. We need to pump him with some extra protein - Carnation Instant Breakfast, Whole milk with dry mild flakes etc. So we will push these. Owen actually does drink a several glasses of milk a day but we usually have 2percent or 1percent on hand. I will talk more with Zarina about this on Friday.
Owen's friend Dan who was over sunday now has a fever as well. We are sorry Dan!!! Everyone stay away.... I seem to be the only one who is able to ward off the evil sickness. Like me friend told me - I CAN'T GET SICK!!!
Tomorrow is another day.....
Monday, February 5, 2007 6:59 PM CST
Our sickness woes continue. All schools were cancelled today due to cold so that was good. Jake woke up fever free. Tyler got up with normal colored cheeks but still gushing at the nose. Chris took Tyler to the doctors but they did NOT put him on anything. I purposely waited to take him to the docs because usually they tell me to let it run its course and if it doesn't improve in a week to bring him back. Well it has been a week - so now they say it is just a cold since he has no other symptoms!! Tyler gets several sinus infections a year and until he gets on an antibiotic it usually won't stop. So now we will have to wait a few more days and probably return to the doctor. Who knows maybe they are right (they are paid for this :-) since his cheeks finally looked better today.
Later this afternoon Jakes temp was back. He was back high 103! I just took his temp again now at 8 and it is back up to 103.1 Yikes he is running high. Of course when Chris was taking Tyler over Jake wouldn't have a fever because that would have made things easy! We'll keep an eye on Jake and he may end up going over to the docs. He is acting fine except when he is spiking - he gets very whiny and cries at the drop of a hat. But as soon as the tylenol kicks in he is back to a happy sole.
Owen was back to feeling so-so. This is why I believe alot of it is depression. Today was just a hang at home day with just dad and his brothers and he was not feeling well. He has perked up tonight a little though. It is so hard, I try to get him to want to play a board game, read a book, anything but nothing sounds good. So he just sinks into depression and doesn't feel good.
Chris started to feel crappy tonight as well - why not - may as well get it through out the house all at once and BEFORE Owen drops to no counts next week. Chris did take a nap and is feeling better. Now I have one question... if I were home with the 3 boys, there is NO WAY I would be able to lay down and take a nap... yet Chris was upstairs napping. But I got home and there he was napping and each of the boys doing their own thing and being so good!
Well hopefully things start clearing up and everyone is back on the mend soon!
Tomorrow is Owen's Dexa-Scan so hopefully that can shed some light on some of his bone pain. Even it is shows bone loss compared to the rest of his body. It just might not be significient enough for the MRI to point to it as a problem.
Have a good night!
Sunday, February 4, 2007 5:13 PM CST
ha! ha! ha! its me owen my friend Dan is here at my house were watching the super bowl and having fun good night
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YEAH for the Colts! They won in honor of Baby Donovan and his family! The Rasmussens are such HUGE Colts fans - I hope this put a little ray of sunshine in their lives.
We just a had small group for the SuperBowl - Ken, Sue, Dan, Kathryn, Papa Fred, and Grandma Lea. Owen had a good day. It is amazing what a little bit of normal play does for him. He was feeling good and we let Dan come over early for the Superbowl to play. Owen was in a great mood and stayed that way until about 7 when he wanted to lay down for a bit as he was achy. But to hear him laughing and playing most of the day was wonderful. I think alot of the time his not feeling good is more on the depression side than anything else. He is cooped up in the house and doesn't get to do alot and just ends up feeling lousy. 6 more weeks... 6more weeks... oh I hope we have no delays and can get through the last of the hard chemo and he can again begin to smile and laugh everyday!
Tyler seems to be going back down hill. His cheeks are just as red as can be and his nose is getting worse. He will go to the doctors today unless he wakes up looking great- highly doubtful! Generally they will not do anything for him when he gets these colds until he has had the nose running for several days then they will treat him for a sinus infection. So that is why I have held off taking him to the doctor as I know they make us wait.
Jake and I were doing some FOSPA 'homework' and he was loving it. He was almost falling asleep at the table but kept wanting more. Finally I convinced him to go upstairs and I would read to him. He made it through 2 books and then wanted to build something with the lego's. So we worked on that, and again he is practically asleep on his feet. So I leave him in my room and tell him I will be 'right back'. I waited 10 minutes and went back in and he was sound asleep. He slept about 1 1/2 hours and woke up with 103.7 fever!!!
Tylenol was able to break the fever and he was back to playing.
We'll see what today brings....
Saturday, February 3, 2007 6:04 PM CST
Owen's so-so days continue. He woke up this morning feeling good and was in a great mood. I still decided to stay home from the game though. Owen hadn't been feeling good all week and Ty too. Course later afternoon all turned bad with sibling fights. They were touching each other, fighting over the same toys and on and on and I had to ask myself... I stayed home because... Oh well things finally settled down and then Owen started to not feel good. He fell asleep on the couch for a couple hours and Tyler and Jake started playing really well with one another. So I snuck in and got to watch alot of the SU game. Things looked good until near the end when DePaul started catching up. Owen was awake by then and Ty and Jake were sitting on the couch with me. I was yelling at the game and Jake asked "Why are you yelling at the TV?" Owen nicely explained that I always do that during SU - I am a little nutso! Well I guess I know how I look to my kids now!
Anyway SU pulled it off. The SU gang (Daddy, Papa Fred,Grandma Lea, Aunt Anna, Erica and Kevin) are on their way back here with Pizza's for an after game get together. Owen has gone upstairs now as his legs started really hurting again. I gave him some pain medicine so hopefully that will kick in soon.
Owen's lizard "Spidey-2" died last night. Owen does not know yet, so we will probably just replace him and not tell him. He actually went in to spray him and said good night and then went to bed. I noticed he wasn't on his rocks so I looked closer and he was down under the log dead. Owen definately doesn't need this trama...
Have a good night!
Friday, February 2, 2007 5:29 PM CST
Owen is still feeling so-so. He did not run any more fevers today. Chris took him over for his appointment and Owen did get sick once while getting his chemo. They were going to send him for the Dexa-Scan today to check is over-all bone density but he was just feeling too sick. So he has to go back on tuesday for that. Zarina thought she heard his lungs crackling so a chest x-ray was ordered but that came back clean - YEAH!!!
It seems so weird not taking Owen. I feel like I drill Chris when they get home on everything that happens! I am out of the loop and it is too weird.
Tyler did stay home again today and he just still isn't feeling good but it is just a cold, he has no fever or anything else so it will just take its time.
Jake went outside today for school to play in the snow. He had a blast and went sledding 'all by himself with Logan' LOL! He got his first progress report today and is doing very well. Mostly needs to work on his drawing and coloring skills. He needs to learn more of his address as he only knows his road. He also has to work on paying attention in circle time and to start volunteering answers. His counting,sorting, shapes, communication, physical skills etc. are all great. His swimming is outstanding - he has come so far for a boy who wouldn't even go in the pool he is now swimming with just 2 bubbles.
Tomorrow is an SU game but I think I am staying home, Owen just has been off all week and I don't want to leave him. Sunday is the Super Bowl and I am cheering for the COLTS to honor Baby Donovan!!! Go Blue!!
Have a good night!
Thursday, February 1, 2007 6:01 PM CST
Another so-so day. Owen did manage to do some math work, and then felt up to playing a video game. That didn't last long as it gave him a bad headache. He is now running a fever. He is 101.2 I did call the doctor but since he still has some WBC he is able to stay home and take Tylenol. He has quite the stuffy nose so is probably fighting this virus. Since he has to be in clinic at 8:30 tomorrow and had counts we were okay to stay home. If his fever gets worse or he starts to feel bad then we need to call back.
Tyler stayed home again today and still does not look great. He didn't take a nap but slept in late. He has already asked to go to bed though. So looks like we are back to being the sick ward!
Hopefully things stay calm and we will remain home. I will keep you posted...
Wednesday, January 31, 2007 5:25 PM CST
Late Update:
I am so sad... what is going on in this world... another child I watch has relapsed. She is from South America and has been home from transplant at Duke for a few months. She was at Duke at the same time as Baby Donovan. http://www.caringbridge.org/southamerica/alexia/
Then Andrew Sleeth from Syracuse he just underwent a second transplant at Rochester just found that 10percent of his blood is not from his Dad (the donor). Although no leukemia is showing in the blood, they will perform a bone marrow test to run further tests on the other 10percent showing. http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=andrewsleeth
What happened to childhood cancers success rates!!! Within the last year I know of 7 whom have lost their battle! This only includes people I know, or follow not to mention the number they mention earning their angel wings! This is just devastating and frustrating and very scary!
Please pray for these families while they find out more information over the next few days.
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All is well. Owen has been feeling so-so. Mostly just tired and his leg pain has really been bothering him. I did do a CBC on him yesterday as he just looked so pale and sure enough it came back that he needed blood. Since I did the CBC late in the afternoon we scheduled him to go in to clinic this morning to get a transfusion.
Chris took Owen over today. They checked him over and decided to put him on a different pain medicine for his legs when needed. It is Tramodrol. He took one at the hospital and thought it worked much better than the tylenol with codeine. He did get sick at the hospital today, only once and then he felt better. We have been concerned with how sick Owen has been feeling, his pain and the high number of transfusions he has been having lately. The doctor thinks his bone marrow and body are just plain ol' tired from all the treatments of chemo and radiation he has had over the years. It is just not bouncing back and just tired... Hopefully once this last 6 week phase gets over and Owen ends this high dose chemo his body can recover and start to bounce back better again. That is the key... get through this last 6 weeks! I will be happy when we get through that last
ARA-C dose coming up next friday. I am already getting nervous about it.
So Owen goes back on Friday for Etophous and Cyclophosphamide in clinic and that is the end of this 6 week cycle.
Tyler stayed home from school. He just did not look good this morning. He didn't want to eat and just wanted to lay around. He slept most of the day. I am trying a different cold medicine with him - Mucinex. Hopefully this will help kick it to the curb quicker. Mom tried it finally when she was sick and this is what seemed to finally make her feel better. Jake is getting it too just because he is coughing and is probably come down with it as well. Tyler will stay home again tomorrow, and we'll go from there. I want to see him active and not needing to sleep before he returns. He acts fine when he is awake but the nose is running galore.
Unfortunately Owen hasn't been getting much school work in as he just has been feeling too down. He has been reading so that is good. I know he isn't feeling good because games are off limits until some work gets down and he doesn't care!! So now I know he definately isn't up to par!
Have a good night!
Monday, January 29, 2007 6:48 PM CST
It was a so-so day. Owen woke up feeling pretty good. Then about 2 o'clock he started complaining of not feeling good. Mom said the color went right out of his face and he went up to bed to lie down. He stayed there until I got home and I finally convinced him to try and get up and about around 6.
He ate a good dinner and then took a soaking tub again as his butt is still itching. I still don't see any open soars so that is good but it is very uncomfortable for him. Hopefully tomorrow will be a better day.
Tyler had a good day and another phone call to me! His cheeks tonight are red as can be! Hopefully he can fend off anything coming. He is in a great mood still. He has been really eating great lately. He has become a vegetable machine! Tyler's idea of vegetable before was corn on the cob - period. At school he eats all his vegetables everyday - I couldn't believe it! But the last couple of weeks he eats corn, peas, beans, lettuce, cucumbers, tomatoes and raw carrots. I am loving it. He needs more in his diet besides waffles and McDonald french fries LOL!!!
Jake is looking pecid as well. Looks like winter finally made it and brought along some virus. We'll see what the next few days bring.
I guess thats it - have a good night!
Sunday, January 28, 2007 3:51 PM CST
I spoke too soon... Owen was up all night going to the bathroom last night. Which was good though.. at 8:30 this morning he was .24 ( he has to get to .2 to go home ). His legs have been hurting alot today. I have been massaging them and he has had tylenol with codeine. It started during homework time - and as it was the story he was reading was 'The boy who cried wolf!' So I didn't believe him at first, Owen has called 'wolf' many times. But pretty soon it was evident that he indeed was in pain. He is very shaky walking, and just moving his legs causes pain. Still think there has to be SOMETHING for all the pain he has on and off. His butt has been stinging today today, so we are keeping a watchful eye, as the Methotrexate can cause issues and we don't want and open sores for bacteria to get in. Owen will take a siths base when we get home and that should help, plus some A&D cream.
We are just waiting for the doctor to say OK and we should be heading out. His 2:30 test has returned and it is .17 It is now 5:00 so hopefully we will get the doctors blessing soon.
We made it home a little after 7. Owen is soaking in the tub to hopefully clear up any infection before it starts. I shaved his hair before he got in - it is starting to fall out again. It never did fully grow back in he has been running around with chicken fuzz. So now he has a more even hair style, and he isn't bothered by it, it actually feels better to him. He has to take the rescue drug - leukovorim at 8:30 along with a chemo pill 6MP. He will take the 6MP pill the next 4 nights as well. His stomach is upset right now so he is ready to lay down and rest.
Have a good night.
Saturday, January 27, 2007 5:15 PM CST
Thinking of the Ramussens family today as they put their precious 2 year old Donovan to rest. This little boy reached far across the country and I bet he had a following in every state. It is amazing reading his guestbook just how many people were fans and supporters. Today is a day that you wish no family had to go through. Cancer should be a thing of the past. Although the success rates improve TOO many children are still losing to this demon.
Another family I follow from Syracuse have a team on the St. Baldricks Foundation fund raiser. This is a function that will be held March 14,2007 in Rochester at Johnny's Irish Pub. Many people will have their heads shaved in order to raise money. The head onocologist at Rochester has 'volunteered' to shave his head! The sleeths have a team 'SLEETH GANG' if you are interested in donating OR if you are interested in shaving your head!!! See Tthe website www.stbaldricks.org. for more information. Funds raised by the organization are for childhood cancer research. Continued research is so important in trying to find cures for cancer. Especially in cases when the cancer repeatedly relapses or becomes refractory (nonresponsive to therapy), the number of available treatment options very quickly decline after standard treatments fail.
Things are going well. Owen had a peaceful night. Usually when he is on Methotrexate he goes to the bathroom 100 times a night due to all the fluids he get prior to the chemo and the water we push while on it. However he did not wake me up once! Detria (our nurse) woke Owen up once to tell him he needed to try. I think he is just so tired from the low blood once he was asleep he was asleep!
He got up around 10 this morning. We worked on some homework together in the late morning and then the Zack and Cody Suite Life marathon started on the disney channel. So Owen was glued to that. Gina the life specialist came in and the 3 of us played Disney Monopoly. We never did finish. Gina had to go at 4, Owen and I continued and played Gina's turn too in case the Rich was going to get a chance to slip in and take her place. Owen started to get tired and we decided to call it quits.
His chemo finished around 2:30 and they immediately put up his blood. His oxygen rate is low. He has been running around 91-92 so they are keeping a close watch. At one point it dropped to 88. Rich had him do a big breath and cough and that brought it back up. They are not sure why his stats are low. His blood is now done and who knows it could be from the low blood his oxygen stats are low. He still looks so pale where normally he gets the rosy cheeks and glow after blood. Will have to see what the hemoglobin count is, maybe he will need more blood.
Our good luck charm (Dr. Cherrick) is not here this time. We have gotten out in 3 days everytime she is on, otherwise we end up 4. So here is our chance to break the cycle and get out in 3 days without Dr. Cherrick. I will push water, but Owen is not the best at drinking alot. That is why they pre-hydrate him with 2 fluids (usually 1) before they even start the chemo.
It has been a good day. Owen is playing PS2 now - first time all day on a game system! I am getting sready for SU vs Louisville. GO SU!!!!
Have a good night.
Friday, January 26, 2007 5:52 PM CST
Room 7604, Phone 464-3683 I will post it on the bottom of the page as well.
All is going well so far. Owen saw Ruth (family therapist) this morning and enjoyed drawing pictures and talking. I think he is enjoying going and we are hoping to stay on a regular schedule.
He started Chemo at 2:30, so it will run for 24 hours. They did not give him blood first, they decided they didn't want to delay the start of chemo for the blood and he would get it immediately following the chemo tomorrow. I was concerned about that as he was only 6 yesterday so probably lower today (they didn't do counts today so we don't know), and now his system will get hit with chemo. I was concerned this may cause additional stress on his heart and considering that he already has low blood pressure issues many times when on chemo... I discussed with the nurse and they will be watching Owen closely for any stress, but thought he should be ok waiting another day for the blood. I am still nervous about this but I guess the docs and nurses know what they are doing.
I had Chris ask Dr. Cherrick about his WBC falling. It was 2.3 beginning of last week, 2.0 on Friday and yesterday 1.7 and he wasn't taking anything to make his counts fall. She said it was just his body not recovering and holding as well as it use to because of all the chemo he has gotten. I will ask her about it tomorrow because that seems weird, that hasn't happened before. Usually when his counts are coming up they stay up until he gets hit with chemo again.
So lots of questions!!
I headed up around 4:30 so I got to get Tyler off the bus and spend a little time with him before leaving. He had another good day at school. Jake stayed home with Grandma - his school was delayed and with the cold and nasty roads this morning it just wasn't worth it for 2 hours. So that is why we also decided to cancel bringing them up to the hospital tonight for dinner. It is just too dare COLD and night time will get colder. Maybe tomorrow Chris will bring them up for a visit and play time.
But so far so good. This chemo usually goes pretty well. Owen will usually shut down on eating but feels well during it for the most part. I will keep you posted...
Please think of Baby Donovans family. His wake is tonight and the Celebration of Life is tomorrow. This will be a very hard weekend on them. I admire Melissa's courage and strength. She is hurting and so sad but pushing through and functioning. She is an incredible Mom!!!
Thursday, January 25, 2007 6:21 PM CST
Got the word today - Owen's bone marrow is clear of leukemia!!
Owen is good to go to start chemo tomorrow. His hemoglobin was low 6.0 so usually they transfuse at 8. However since he is coming in tomorrow for inpatient and he seems to be acting fine we are holding off and will just transfuse blood prior to getting chemo. Chris will head up to the hospital with Owen in the morning and then I will head up after Tyler gets off the bus with him and Jake. We will eat dinner together and then Chris will return home with Ty and Jake. Unless it is freezing outside then we may rethink it and not bring the boys out and about. Jakes school is already delayed as of tonight so he doesn't start until 9:30 tomorrow. So we'll see what tomorrow brings.
Thankyou everyone for your time and blood at the Nucor Blood Drive today. I believe we had 23 people. I unfortunately was unable to give - my iron was low. I have been on a good stretch of being able to donate. I think the total donor number was 23 (our goal was 20). I think that just sounds awful considering Nucor has 300 employees and 7 of the donors were outsiders! But the guy form the Red Cross said it was a very typical number. Usually around 20 is the amount they receive from any business. So I guess we did alright.
Tyler had a good day so I got my phone call! yeah!!!
I will keep in touch on how the tomorrow goes - have a good night!
Wednesday, January 24, 2007 9:12 PM CST
Owen did stay home. The nurse from AJ school even called this morning to tell us she did not think it was a good idea for Owen to be in school as there was so much illness going on and 24 kids out. How nice was that!!! So Owen did do some reading, math, and board games. I need to get some work from school though to catch him up.
I still have not heard the official results from the bone marrow test. I emailed Zarina today but she said they were not back yet and would keep checking and let me know. So here I go again getting nervous... why are they taking so long???
I will take a blood draw from Owen tomorrow morning to make sure his counts are good to start the Methotrexate on Friday.
Owen felt good all day until later tonight his stomach was upset and he laid down for 45 minutes and was feeling better. He then came back downstairs and made muffins!
Other than that all is quiet. Have a good night!
Tuesday, January 23, 2007 7:19 PM CST
So much for Owen WILL go to school today! He said his throat was hurting this morning. He did go to his eye appt. and retake the depth perception test and did much better this time. He has to go back in 4 months. So he stayed home with Chris.
Miss Tracy did come today and he did work with her well. She did say there is 24 kids out at AJ school with illness so we are playing it safe and keeping him home so he doesn't end up with something and delaying treatment.
He has some strict rules about being home the next couple days. He must work on reading, math facts and spelling words. He must work on these as much as he plays his game systems! He almost fell on the floor when I said that. So either he will limit his time OR he will gets lots of work done! LOL
Jake had his evaluation at FOSPA tonight, it was not a regular night. He just went in and did a bunch of exercises with the 2 teachers to get a pre-FOSPA feel for where he is and then at the end they will repeat this to see how far he has come.
On our way to FOSPA Chris called - he had to go to the Police Station. While at Dr. Specs a car was hit - he wasn't sure if they were calling everyone in who was there that day or if they thought he did it. He didn't believe he did hit anyone he didn't feel it. So he arrived and sure enough an eye-witness had seen him back up and bump another car. There is no damage to his truck and a little dent in the roof of the other car. So that stinks!!!! I DID remind him that had that been me..... He agreed he would not have taken it as well as I did :-)
STILL TIME TO SIGN UP FOR THE BLOOD DRIVE OR WALK-INS ARE WELCOME. PLEASE CONSIDER DONATING.
So other than that in for a quiet night. Have a good night!
Monday, January 22, 2007 7:05 PM CST
Owen did not go to school today. He 'claimed' he was really sick. As you can tell I did not believe him, but we are in the frame of mind that we will not push him, as we have been wrong before thinking he is fine and he ends up being sick. I believe it is still left over from his late night with Thomas. His body is going to take several days to recover. The boys were still up at 5:15am!!! They had come up to bed at 10:30 and I dozed off to wake up to them laughing - I glanced over at the clock to my shock! I immediately went in and they both about jumped out of their skin and knew immediately I was NOT happy. Owen is now grounded from having anyone spend the night (for a month) so make sure I stick to my guns everyone!!!
So I thnk he is just still really tired, his body is not going to recover fast (they were up at 8am!). He complained most of the day of not feeling well, he just hurt all over. Mom (yeah - she is back!!!) took his temp and blood pressure all day. I did buy the blood pressure machine as it is usually his blood pressure that starts dropping first before anything else. He ate dinner and now says he is feeling much better, but he REALLY didn't feel good. I am sure he didn't but it had nothing to do with being sick!
Owen has the repeat of his eye test tomorrow on the depth test at 9:45 and then WILL BE GOING TO SCHOOL!!!!
My cell phone is broke - it took a swim in the YMCA pool yesterday when I was bent over the edge helping Tyler, so that is why I missed his call. I should have a new one in a couple days it is ordered. I tried to dry it out and had it all apart but no luck.
Other than that all is well... have a good night!
Sunday, January 21, 2007 9:08 AM CST
Today I write this with many tears. Baby Donovan earned his angel wings last night at 9:25. He worked his way into my heart and to so many people out there. May he find peace now. He was beginning to have alot of pain and for that it is good that he did not suffer. Please keep his family in your prayers as they have along recovery road ahead of them.
Good day here. Owen was worn out from his big night with Thomas. He had a bloody nose last night that ran for about 5 minutes, his platelets should be fine so it was probably just dry for him. We have been having trouble regulating the heat - but Chris got it fixed today.
Tyler had a swim birthday party today. He loves swimming!! I will probably get him back into swim lessons next session. It was for one of his classmates Lexi. Now I have 3 boys so what do 8 year old girls like??? I hung out in Walmart for a while yesterday and spied on the various girls moving in and out. I finally decided on a Bratz doll whose hair you could color. Yeah - it was what she was hoping for!!!
It was hard though - I was thrilled that Tyler was included in the invites. At the party though you could tell he was not 'one of them'. He swam very happily in the pool and would yell out to me to watch but he swam alone and played alone. In the party room he sat down at the table a couple chairs away from some of the kids. I tried to get him to move closer but he didn't want to. He was happy to get his cake and watch the present opening but then he went and got our coats and was ready to go. This is always one of my biggest fears for Tyler, will he have 'real' friends??
Saturday, January 20, 2007 7:04 PM CST
All is well. It was the usual 'fun' saturday for me. Clean, laundry, bedding, groceries... yeah 6pm I am ready to play with my boys. We did many puzzles and now we are making a lincoln log town....
Owen crashed last night early he was very tired the day finally caught up to him. Today he took about an hour nap. His legs were cramping on and off today and I gave him a couple of massages to help.
Thomas came over at 6:30 to spend the night. It is amazing how much better he is just having a friend. He would complain all day on and off of leg pain or just being whiny. I was thinking it might be a good thing to cancel Thomas. He pleaded with me not too that he would be fine. Sure enough he is on cloud nine and no complaints. He was sitting indian style on the floor playfing Xbox and I said are you ok like that. "Yeah mom -I'm fine" in the brightest and cheeriest of voices. I can't wait till he is in school again full time and with his friends, I think that alone will help soooo much with all his aches and pains.
My little Donovan is in alot of pain. His mom did something today that NO mother should have to do. She went through the steps of getting the necessities ready when Baby D says it is time. It just tears me up thinking of what the family is going through now. Please say a prayer for them all.
Friday, January 19, 2007 5:25 AM CST
***Evening: ***************************
ALL IS CLEAR!!!!! The preliminary view of Owen's marrow looks good. We will know more detail in a few days. I don't know why I was so nervous. Whether it is all the bone pain, his not feeling well here and there, baby Donovan, or what but I was nervous. Chris brought Jake to school and met us over there. He arrived just as Owen was being wheeled into the procedure room at 10. We got to hang out a few minutes until he was about to doze off, gave him a kiss and headed to the waiting room. Usually Zarina will come out and let me know she is done but next thing was the phone ringing to say one of us could come back. So I headed to recovery. Owen has an isolation room due to the MRSA precautions, so I asked if Chris could come back too since we were alone. The nurse said no - it would cause other parents to get upset that we were 'special'. So once Owen woke up he asked to see Daddy too so I headed out and told Chris to go back. A few minutes later the phone in the waiting room rang again. It was for me - nurse said I could come on back. Ok now my nerves are on end. Why can I come back now, is the doctor there? do they want us both there? what is going on!!!! I arrive in the room to just find the nurse, Owen and Chris. He just changed his mind and thought we could both be there. oh thank goodness - i am breathing again. Once Owen was awake enough and had laid flat long enough they released us to go to 5C. We were still waiting for blood work to come back. Owen had looked pale to Zarina and I so we decided to double check him.
Zarina came out and told us all looked good. We got the blood results about 1/2 hour later and Owen is still coming up.
WBC 2.0 (no change)
Hemoglobin 9.4 (up from 8.1)
Platelet 95 ( up from 39)
ANC is not back yet but with his WBC the same it is probably around 1000.
So Owen is good until next thursday. I will do a blood draw and if his counts are good he will be admitted on Friday for Methotrexate. So a 3-4 day stay depending on how fast the chemo leaves his system.
Owen felt pretty good all day. He didn't have any of the spinal headaches he usually has or the pain.
I am off to my friend Joanna's for a candle party. (yeah - its an excuse to get together!!! ) I am anxious to see her newly remodeled kitchen!
Have a good night!
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Morning:
Owen did make it to school - yeah!!! He said he had fun, but as for what he did... 'nothing'... hmmmm After much 'pulling teeth' I found out he had music, math, and reading and that was about it because things were kind of 'out of rhythmn'. He did go visit the nurse - must be looking for Nurse Jane :-)!! He said his neck was bothering him. He said everyone was excited to see him, they just said HI and acted normal. I told him that before he said he DIDN'T like it when they got all excited over him returning he wanted it to be normal and I had made sure the teachers knew this. WELL he doesn't like it when they hover all over him but a little excitement would be nice!
Tyler had another great day. I missed his call as I was in my doctors office and the cell was off. I walked out at 2:33 and had just missed him! I made a big deal when I got home. Not sure if it is the phone calls, the new FM system he uses in school to hear all his teachers or what but it sure is nice!!
Poor Jake - we messed up again! We need MOM!!! Chris took him in today. I forgot to tell him it was swim day again so he had no swim shorts - had a towel - but nothing to swim in!!! It was backward day - so he got to wear his clothes backwards - he thought this was soooo funny. It is backward day again today (and no swim LOL). Each day in January they are doing a fun dress thing.
Owen and I are off early this morning. He has to be there at 8:15, I imagine the procedure will be at 9:30 or so. They will extract some of him bone marrow to test it, remove some spinal fluid to test and then replace the spinal fluid with 3 types of chemo. I could not sleep last night. I don't know why I am so nervous. I don't like the bone pain he had and with the MRI clear I have to wonder what it is - praying it is not any leukemic cells in there. He will still have the Dexa-Scan to measure his total bone mass through out his body but that still has not been scheduled.
I will update later - I will know the preliminary results but it will take a few days to get the detail.
Thursday, January 18, 2007 5:36 AM CST
Owen did not make it to school yesterday. He woke up feeling crummy. He came downstairs and I fixed him breakfast. As he sat up to eat he just started crying and complaining that he didn't feel well, his tummy hurt. I had him get dressed and try to move around maybe he was just too sleepy and needed to wake up. This didn't help. He said he felt as bad as when he got the MRSA blood infection! Yikes! Ok back to bed and sleep a bit more maybe he would feel better, maybe he was nervous about returning school.
Chris had to work so with Mom still under the weather I would get the kids off to school and then return to see how Owen was doing. It was swim day for Jake so I got his backpack all packed, found him a 'silly hat' for their fun day. They are doing something fun each day till the end of January. Today is wear your clothes backwards day. So I got Tyler off and on the bus, he was ready just in the nick of time. Then finished getting Jake dressed in his swim trunks and pants. Phew this getting kids ready stuff is hard in the morning - I haven't had to do it in a long time! Out the door we went - got to Jakes school & oh shoot I left his backpack home!!!! Teachers said they would manage, they had an extra towel, Jake could just go 'free' after swim since he had no underwear and no worry about no shoes ( he wore boots and his sneakers were in the back pack too!) Too funny - whole new appreciation of all Mom does and keep it all organized!!!! I was so proud I remembered to pack everything just forgot that minor detail of bringing it!
I returned home and Owen was sound asleep. I took his temp and he was 99.2 so not really a fever just a little warm. Kim was picking Jake up at school and then returning here and I went into work for the afternoon. Owen woke up just before I left (11:30) and said he felt a little better. He just looks so pale still even after getting the blood. I will feel better after getting the bone marrow test done friday to know he is ok.
Owen was good all afternoon and felling good. I returned home to here him laughing and having the best time. I decided I would go to the SU game since he was feeling better. What a game!!!! SU was beating Cinncinati and Leanne, Anna and I got chatting and catching up with one another not really paying attention ... then hold on Cinn. has caught up!!! It is now a one point nail biting game! SU managed to hang and win by a point but wow.
Back home, Owen was awake. He was feeling ok but he said around 7:30 he was feeling really sick again. He had gone upstairs to lay down and now was feeling ok again. So not sure what is going on. I am going to get a blood pressure device today. His blood pressure seems to be more of a tell tale sign when something is going on than fever. His blood pressure always drops before any fever shows, so I will feel better knowing that his pressure is ok. I was saying to a girl at work that I needed to get trained on how to do that... but it is the day of technology... her husband has a home device you just wrap around your arm and it reads the pressure - no stethoscopes or anything!!! I remember seeing these now.. Thanks for the tip!
Not sure if Owen will make it to school or not today... see how he feels when he gets up. I certainly don't want to push him, he knows his body well enough now to know what he can and can't do. We talked last night about making sure he was honest about how he was feeling - how important it was - that he couldn't say he wasn't feeling good because he was nervous about doing something or didn't want to do something. He told me he hasn't done that in a long time, and he won't. I don't believe he was faking, especially since he slept until 11:30, but I know he can 'over' dramatize how sick he feels.
I'll let you know how the day goes... then tomorrow bone marrow / spinal tap... and hopefully a clear result to put all my anxieties to rest for all his aches and pains in his bones he has been having.
Have a good day!
Tuesday, January 16, 2007 7:52 PM CST
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I just finished reading my caringbridge family websites and received the saddest news. Baby Donovans cancer is spreading fast and the chemo will no longer slow it down. The doctors have told them Donovan will probably not make it through the weekend. My heart is breaking... I have fallen in love with this sweatheart. His family is wonderful and loving and have been through hell. Please pray for them, they need all the support in the world right now. Donovans website is posted at the bottom of this page.
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Owen was off to the doctors this morning for blood. His counts have improved even since yesterday:
WBC 2.0
Hemoglobin 8.1 (before transfusion up from 6.9 yesterday)
Platelets 39 (up from 22 yesterday)
Neutrophils 51 R>
So he is able to stop the anitbiotic IV and pills. AND best news of all.... he will return to school tomorrow!!!! Yeah! He will have to miss Friday due to his bone marrow/ spinal tap procedure but then he can return next week Monday - thursday, then we start inpatient again on Friday.
Things got a little crazy today. Chris and Owen weren't on their way back from getting blood yet and Tyler was scheduled to get off the bus soon. Thank goodness Mom was thinking!!! She called me at 3 to see if I had heard from Chris. Mom still is not feeling very good and although she did have Jake, coming out to the house and possibly spreading germs and just for the fact she was still under the weather - I bolted out the door. Tyler's bus was already here when I arrived and they were looking for us!
Miss Tracey came today to tutor. I have to call the bus garage to let them know Owen is returning but not Miss Heath - Owen wants to surprise her!
Tyler had a pretty good day with a little break down in Social Studies, which he did end up turning around and behaving. However he couldn't call me, so made sure he knew he had to behave all day - no laying on the floor!!!
Jake started FOSPA tonight. It is a pre-kindergarten program for the parents and child to attend one night a week from now until May. He did quite well. I thought he would be Mr. Shy and not talk or do anything. He started out shy and sat in my lap while we introduced ourselves and sang a few songs. Then we were off to the activity room to play lots of different stations. Jake loved it!!! He loved 'Hi-Ho Cherrio' game the best and of course the painting. Should be a fun time! He of course had to roar at everyone and show them he is a dinosaur!!! His name tag is ... yep .. a dinosaur!
Have a good night!
Monday, January 15, 2007 7:31 PM CST
I decided I needed to check Owen's count this morning he was looking too pale and his lips were white as can be.
WBC 2.3 (up from .5)
Hemoglobin 6.9 (down from 9.2 - they transfuse at 8)
Platelets 22 (down from friday after transfusion)
Neutrophils 51up from 4 on Friday) This is a good sign
that his system is rebounding.
ANC - 1173 (Yeah back to an immune system!!!)
So looks like his system is on the mend but he was in need of blood. I called the clinic when I did not hear from them and found out they were closed today for the holiday! So I paged the doctor to find out if Owen needed to go to 7H to get the blood. Dr. Sadowicz said he was fine to wait until the morning. So I emailed Zarina to give her a heads up in case the fax gets lost having been sent today and no one was there.
Chris will get the kids off to school and after dropping Jake off will head up to the hospital with Owen. One of the nurses asked me the other day if Chris ever came to clinic as she never met him - so now she will be blessed with meeting him!
Other than that a quiet day. Tyler seems to be better today. His nose was a little dryer and he didn't wake up with sealed eyes, so we'll see what tomorrow brings. Mom is feeling a little better and actually got off the couch today. She will pick Jake up tomorrow from school unless she takes a turn for the worse over night and then she will call me.
Have a good night!!!
Sunday, January 14, 2007 5:30 PM CST
Another good day. Owen is looking very pale though and his lips are pretty pale too. I think I may do his blood counts in the morning vs. waiting until tuesday since he is so pale. I will see how he looks in the morning.
Quiet day. Owen has his friend Dan over now while Daddy and Kenny watch football. So a little bit of fun for him. He was hoping to have a friend over today so it worked perfect when Ken called.
Tyler is very stuffed up. He did ok yesterday but this morning his eyes were sealed shut. His nose is very stuffy. Otherwise he is happy and playing good so it doesn't seem to be bothering him. He did not like his eyes this morning though. I am sure it scared him that his eyelashes were stuck together. So the good thing is he didn't even fight me on cleaning them!
Mom is very sick too. She left early friday when Chris got home, and said shortly after she was down and out and still is. So Chris was suppose to work a short day tomorrow and then is going to be laid off so it worked out good. He will just stay home with the kids.
As far as I know Owen is still low counts. He was only the .5 on friday so he would have to jump alot to be healthy. The less run in he has with illness the better.
Went to the Theresea Alfieri wake tonight. Please keep the alrfieri family in your thoughts and prayers.
The temp is dropping and the ice is beginning to form again so becareful. I here it is suppose to stay this way through the night so be careful in the morning.
Have a good night!!!
Saturday, January 13, 2007 6:02 PM CST
All is well.
Last night I had a much needed girls night out. My cousins Pam and Missy turned 40!!! While I can't say they are old,( all of us are still young at heart)
I can say they joined the club!!! We went to dinner at Sunset first and enjoyed alot of laughs, especially when looking back at the pictures from over 20 years ago. Not sure what was more funny how we looked with those hideous clothes are parents MADE us wear against our will or our parents themselves!!!
After Sunset we headed to Curleys and played some darts (it took awhile but I did finally remember how and hit the board). Then we decided to make sure we all knew what age bracket we were in and went to hang out with the 20 year olds at Belvederes!!! My cousin Katrina was with us so she could ease the transition to the 'younger' crowd. She may NEVER let us come out again, as us 'old' people can be quite embarrassing between where we sweat and the thong people that try to talk to us!!! LOL I had so much fun. We are already in the works of planning a sleepover party to do the girls night again withour going anywhere.
Today we went to the SU game and then back to Dad and Leannes for pizza and Cake and icecream for Papa Fred's birthday. SU is on a roll.....
Owen has been feeling great!! Things are quiet and we are enjoying it. Tomorrow will be Miss Heath tutor day and otherwise just a quiet day.
Have a good night!!!
Thursday, January 11, 2007 6:42 PM CST
The sign of bruises was correct. Owen had a platelet count of 3! So we were off to get a transfusion today. He did fine, was sound asleep about 1 minute after the benedryl pre-med started. He slept the whole transfusion, the trip home and staggered into the house. His counts are:
WBC .5 (up from .3)
Hemoglobin 9.2 (down from 10.5)
Platelets 3 (don't know after transfusion what they went up to)
ANC 20
So basically he still has no immune system, but he did have neutrophils today (4) versus the 0 on Monday so his system is starting to think about rebounding!
I have to do counts again on Tuesday. Tomorrow was suppose to be the end of Owen's IV but since he still has no immune system the doctor is continuing it until we get counts on tuesday. I did de-access Owen tonight - he can only keep the needle in his port for a week. This allows him to take a nice shower since he doesn't have to be nervous about getting the bandage wet. I will re-access him in the morning.
Next Friday Owen has a spinal tap and Bone Marrow aspiration. I don't know the time yet they have to check with when the procedure room is available. I always get a little nervous about these tests. It is the earliest way to detect the leukemia coming back so until I get the all clear message I get nervous.
A young boy (21) John Howland earned his angel wings yesterday, after a one year battle with cancer. John was a Union Springs graduate and loved very much by the community. My husband had met him several times while at our friends (Ken and Sue) camp. He talked about what a super nice kid he was. Please pray that his family finds comfort in John being at peace now.
I have said it many times BUT there is no better way to say it - CANCER SUCKS!
Wednesday, January 10, 2007 6:37 PM CST
Another good day. Owen's ankles were bothering him early this morning so I massaged them and that seemed to help he fell back asleep and slept until after 10. He said he was awake alot of the night with his ankles throbbing.
Miss Heath came today and they did alot of work. Owen seemed in a great mood. Miss Tracy should be coming tomorrow.
Tyler had another good day but I missed his call - I had left my cell phone in the car! I was worried he didn't have a good day till I realized I didn't get his call due to not having the phone. So I made a big deal when I got home about his good day.
I will draw Owen's blood tomorrow for counts and see if he needs any transfusion or if his system is starting to rebound yet. I have a feeling he may need platelets he has bruises all over his lower legs.
Off to go play 'Jaws', hopefully the shark(s) don't eat me!!!! They have so much fun pretending to be sharks. Tyler even crawls across the floor with the 'Dunt dunt dunt dunt dun-ta-dun....' Ahhhhhh look out!
Have a good night looks like fun here!
Tuesday, January 9, 2007 7:29 PM CST
Owen still felt pretty crummy through the night and into this morning. But by late morning he was feeling good. He got up ate, did his homework and was playing PS3. Pam Walawender called to see if Owen wanted to come over and practice spelling and he was out the door quick as a wind. Him and Samantha are both in the Weedsport Spelling bee in April. I asked Owen at dinner why he is so willing to work with Pam but I have to pull teeth... 'Well because Pam doesn't have a son so I am like the son she never had and I have to be nice to her' Oh - so you're real mother you don't have to be nice too? 'No - thats not what I am saying, but you didn't have a choice and since you always wanted a girl you don't like me as much.' What?! Honey I love all my boys and wouldn't trade you for the world. Not having a little girl is not an issue. If it was I would have tried to steal Alexis from Aunt Shelly! He laughed then and said he has been thinking about how to do that! He then clarified that when he goes to Pams he gets to work with Samantha and they have Pam to themselves - I always get distracted with Jake and Tyler and it makes it hard for him to want to do it. Ok at least that makes me feel a little better!
My mom is an angel! She fixed my shower curtain today! It has beads holding together the sections and some of the threads have been breaking. She sewed the sections back today... one of my many projects I never get to! So thankyou!!!!
I also have another angel out there looking out for me. I received a beautiful card from my cousin Pam that I want to share:
If only I could work miracles, I'd wash away all that troubles your heart. I'd take away the fear and the pain and replace them with happiness. You are so special to me and it hurts me to see you going through these rough times. So remember no matter how scared you may be you'll never be alone. I'll always be here for you.
And she promising another 'chick-flick' night with me anytime!!!
Thankyou Pam that was wonderful. This IS how I make it through - knowing all the support and love I have out there!!!!
I did talk with Zarina today and Owen's ANC is 0!!! He has totally crashed so absolutely no public places or sick people. We haven't let him go anywhere but I was hoping he was getting ready to come back up, but looks like he is not ready yet! So fingers crossed no fevers as that buys us a trip to the hospital. This is when he usually got so sick before but the last time the antibiotics at home let us stay home so hopefully it will do the same this time.
Tyler has been having more great days at school. I have been getting a call from him everyday to tell me he had a good day. Hopefully he is over what ever was making him act out. He does not have the FM system in school which amplifies all the teachers voices directly into his ear so maybe being able to hear everything going on in the classrooms has helped as well.
Have a good night!!!!
Monday, January 8, 2007 7:54 PM CST
Owen woke up early at 6 and was just bouncing off the walls. He was so chatty. I figured it meant he was either low on blood and hyper or just feeling great! His blood counts were good as far as transfusions 10.2 Hemoglobin (transfuse at 8) and Platelets 29 (transfuse at 20) but his WBC is .3 which means he still has no immune system.
Later morning he started not feeling well. I went to pick him up at 1:30 to go to Dr. Specs to repeat the depth perception test, but he didn't think he could do it, he felt crummy. So I cancelled and re-scheduled for the 23rd.
By the time I got home he was feeling ok and kept getting better. Until about 8 he started feeling crummy again. He says he just aches all over and just doesn't feel good. He is very whiny so I don't like this. I hope it doesn't mean he is getting sick!!!!
I don't have to do counts again until Thursday. If he continues to feel crummy I will probably do then earlier just to make sure he didn't take a plummet in one of the blood areas.
Fingers crossed and prayers that nothing is going on with Owen!!!!
Sunday, January 7, 2007 7:03 PM CST
Another good day. I thought Owen looked really pale when he got up today... course he was 'forced' out of bed at 9:45 when Tyler woke him up! But as the day went on he looked good. Tomorrow I will do a blood draw in the morning so that will confirm it.
Miss Heath came today to work and work they did. they spent a good couple hours and she said Owen did great. She thinks he is doing well and mostly just sees writing as any slow down. But once back in school where he would be writing alot more and daily this should go away.
Had lots of boy's time today and we played lots of games, puzzles, video games you name it. It was a really nice day. Tonight I got the Marvel Super Hero Ani-movie going. It is a frame- by - frame movie capture animation. I got it set up and Owen has been making 'Owen Wawrzaszek Productions' ever since. He is getting much better at it all ready. It is truly something you need patience for as you have to move the characters a 'tiny' bit at a time so when it plays back it looks like it is a movie.
Have a good night.
Saturday, January 6, 2007 6:54 PM CST
Another good day. Owen looks tired. He has big dark circles under his eyes but he says he feels fine. Could be a sign that he might be getting low on blood but he doesn't look real pale...yet.
I did count up his blood/ platelettes. Last year (2006) Owen had 22 blood transfusions and 10 platelette transfusions! Wow.. I was shocked I didn't think it was that much!
Tomorrow Miss Heath will come work with Owen for a couple hours to catch him back up. He might be able to go back to school by the end of the week, or else more likely the following week. His WBC was only .4 on Friday so basically he has no immune system now.
Did get some news from the school. Miss Heath brought the parent report for the Math ELA test Owen took in 3rd grade. He scored 695, meeting the standards is 650-702.
The actual break down is:
Number Sense and Operations Strand 92 (target 54-70)
Algebra Strand 89 ( 62-75)
Geometry Strand 80 ( 50-61)
Measurement Strand 95 ( 69-82)
Statistics and Probability Strand 88 ( 55-71)
So he scored above the Target in all areas! Pretty good for missing 1/2 of 3rd grade. The ELA tests for 4th grade are next week. I had attended a 504 meeting to but some things in place so Owen was allowed breaks if needed due to his lower stamina. However the Superintendant said it was not worth risking him coming in with no immune system ( he was going to be isolated). 95 percent of the kids must complete it so they did not have to have Owen be there. He will however take the test at a later date and have it graded so that the school has a baseline for where he is.
I guess thats it - have a good night!!!!
Friday, January 5, 2007 6:44 PM CST
Well I just lost my whole update with the satelite going down so this is the short version! Arghhhhhhh....
Owen ended up needing just Platelettes today. We were delayed in starting as the hospital was waiting for a delivery from the Red Cross. Supplies are very low for Blood and Platelettes so DONATE, DONATE, DONATE!!!
Nucor is sponsoring a blood drive on the 25th of this month. I will post the exact time once I receive the material from them next week. If anyone is interested please let me know. I believe the time will be 9-2.
Owen has received over 20 blood transfusions and I would guess pretty close to that in platelettes as well I am going to go back through history and count them.
He does have to increase his Exjade medicine as his Iron in his system is still increasing due to getting so many transfusions lately. We need to get that iron level in control!
So other than that all is well, Have a good night!
Friday, January 5, 2007 6:35 PM CST
Well I just lost my whole update with the satelite going down so this is the short version! Arghhhhhhh....
Owen ended up needing just Platelettes today. We were delayed in starting as the hospital was waiting for a delivery from the Red Cross.
Supplies are very low for Blood and Platelettes so DONATE, DONATE, DONATE!!!
Nucor is sponsoring a blood drive on the 25th of this month. I will post the exact time once I receive the material from them next week.
If anyone is interested please let me know. I believe the time will be 9-2.
Owen has received over 25 blood transfusions and I would guess pretty close to that in platelettes as well I am going to go back through history and count them.
He does have to increase his Exjade medicine as his Iron in his system is still increasing due to getting so many transfusions lately. We need to get that iron level in control!
So other than that all is well, Have a good night!
Thursday, January 4, 2007 7:16 PM CST
Another good day. Nice and quiet and we will take all the quiet days we can get!
Miss Tracey came today to restart the tutoring back up and Miss Heath will come tomorrow. Fingers crossed Owen may be able to return to school if not be the end of next week, then the following week.
Tyler had a good day at school so I got my phone call! I told him this morning I want him to call me. He did something today which I hope is a sign that things may start happening... after his tub I went to put his diaper on and he started crying saying 'No, No... underwear' and kept pushing the diaper away. He got new sponge bob underwear for christmas and he loves wearing them but we aren't having much success staying dry in them - so going to bed in them is no way. But the fact that he doesn't WANT a diaper is good!
Tomorrow is an early day. We will head over to Clinic first thing in the morning and have a checkup and blood draw. Chances are Owen will need either a blood or platelette transfusion (maybe both!). His IV antibiotic has been going well and he is feeling good.
Please pray for Baby Donovan he has been have very high fevers, either from the infection in his body or from the cancer growing. The family is cherishing every moment they have left with their precious little boy.
Have a good night...
Wednesday, January 3, 2007 6:04 AM CST
*** Evening Update ********************
Owen had a good day. I had a couple of angels help me out! My cousin Chrissy called when she saw I left Owen's Medicine at the hospital. She volunteered to go get it and drop it to her Dad and then he brought it to me at work! Thankyou so much Chrissy and Uncle Bernie that was awesome!!!! The hospital did goof up though they had the one medicine ExJade that was in their med room, but didn't get the medicine I had left in the room. When I called they said that they couldn't find any in the room. I told them it was in the drawer in the closet not the vanity drawer. They rechecked and it was still there. So tonight my Dad stopped in when he was over in Syracuse and picked it up. Thanks Dad!!! What would I do with out you all - one less stress zone - worrying about him not getting his meds!
We began work on the Lego Batcave tonight. And you are right Mrs. Murphy 'Holy Lego Batcave!!!' I think it will take us 10 years to get it together. There is only 1,075 pieces! Jake kept asking why we didn't have the batcave yet...
Have a good night!
****Morning Update *******************
We made it home a little after 3. All is well. The boys were happy to see me and we spent the night playing and snuggling. Jake and I must have built a dozen puzzles over and over again. Tyler was sooo happy to have Owen home to watch him play PS2 again. Grandma bought Owen the Happy Feet game and this was a thrilling snow ride of a game Tyler was squealing with delight! Thankyou Grandma Pat!
Owen's IV medicines didn't arrive until almost 8 o'clock! He has to have Vancomycin by IV 2xDay. It runs a little over an hour and he has to have Benedryl before due to reactions. He is also taking Cipro and Vorconizol (antifungal) 2xDay as well. Hopefully this will keep any nasty bacterias from coming in while his counts are low.
Owen is feeling good - such a big difference from a few days ago!!! He needed help getting up the stairs as he is still weak from being so sick but otherwise he is back to Owen.
Tyler just has a cold so he was not put on any medicine. I will keep the cold medicine going and hope that it doesn't turn into anymore and that Owen doesn't catch his cold.
I did forget Owens Dapsone (anti-pneumonia) medicine at the hospital as well as his Ex-Jade (high iron). I called the hospital and they will get it together for me. I have extra Ex-Jade here at home, but will have to find out if it is okay for Owen to miss the Dapsone until Friday or if I have to get a new script or worse go to Syracuse to pick it up since I just refilled that prescription and the insurance will probably not allow me another yet. Always something!
I am feeling better, (breathing again) and relieved to be home. Thanks for checking and have a good day!
Tuesday, January 2, 2007 11:49 AM CST
All remained quiet. I knew my Owen was back - at 9:30 he asked for the PlayStation to be hooked up! He played for a while and then it was time to rest and not get over tired again.
He is getting discharged today. We should be out of here later this afternoon. His system has already crashed out.
WBC = .7
Platelettes 66
ANC = 480 (<500 is low immune system)
So he will start the home antibiotics tonight and continue for the next 10 days. We have an appointment on Friday for a checkup and most likely both blood and platelette transfusions. If I see Owen looking pekid or changing prior to that he can come in earlier to check.
He did meet with Ruth today (the physcologists). He does want to continue to meet with her so we will try and meet up again on Friday, otherwise we will make an appointment. Owen said he was able to talk with her and is glad he is talking about his dark/ angry side and is hoping this will help him with his anger. He looked nervous when he first came back, but he said he wasn't. I told him he can talk to Ruth about anything and whether he wants to talk with me, Grandma or anyone else that is totally up to him. What ever feels right for him and helps him. That is when he talked a little about his sand designs and talks. I think this will be very good for him and for him to understand he is normal and being angry is ok.
I just picked up the Neulasta shot ( it helps to boost his immune system). He should get that at 1 and then we will probably be releases shortly after that. I guess I better get to packing. I didn't want to start until I knew for sure we were going.
I keep forgetting to tell you - the MRI results are in. Very strange though - they do not show anything! Usually it is the otherway - xrays show nothing and the MRI picks it up. Owen will still go see a bone specialist, and have him review the MRI, plus he will still have the Dexa Scan to further look at him just to be sure. I will be soooo happy if indeed he does NOT have any bone loss issues. So we will wait for more tests and analysis of the MRI to be sure.
Have a good day - things are looking up again and I am breathing a little easier again.
Monday, January 1, 2007 10:41 AM CST
*** Monday Evening ******************
Owen is back! He started out slow and just little conversations but was playing on the computer. Papa Fred and Grandma Lea came up to visit and he just showed Papa clips from the upcoming Spiderman and was quiet otherwise. AT 3:30 he finally wanted to eat!!! He wanted Lucky Charms cereal. He immediately had diahrea following it but at least he did eat. At 8:00 he was up and brushed his teeth, and then did 2 laps in the hall. That was about all he could do his legs were tired but then he wanted to sit in the chair vs. his bed to play on the computer. He just had the IV removed from his arm so all good signs.
Dr. Souid was in and asked me how it felt to have my boy back! WONDERFUL!!! He said they will do a blood count in the morning and check his stats and most likely Owen will be able to go home tomorrow. Everyone keeps commenting on what a huge difference in Owen, even Brooke called him today to see how he was doing and to let him know she would b e in tonight so hopefully Owen will get to see her a bit in his 'normal' state.
I just can't tell you how good it feels to look at Owen and he is awake and alert and just as cute as can be again!
*** Monday Morning ******************
Owen's night stayed pretty stable. He did run a fever again later in the night and was throwing up. His blood pressure dipped a little bit so the resident was called in to take a look, and decided he needed to just be watched. Owen and I fell sound asleep and woke up just before midnight. Owen was running a fever again and had some diahrea. Brooke was here by then and gave Owen some cuddles to help him feel better. I think we were both out and then slept through the night very soundly - we were both in need of it. Owen woke up twice to go to the bathroom and that was it. As of this morning Owen has no fever and feels ok
Dr. Souid was in and he said they are going to stop the anitbiotics and keep an eye on Owen. If he remains stable then they will send up home in a day or two.
Tylers nose is gushing galore. I have already decided he will stay home tomorrow and get him to the doctors. Hopefully they will put him on something so that we don't have to worry about when Owen comes home, as his system will be crashing by the end of the week.
I'll let you know if our day changes...
Sunday, December 31, 2006 7:33 AM CST
***** Sunday NIght *******************
It was a very long day and quite scary at points. Owen woke up once totally disoriented. He was asking me if his remote was fixed that he needed it fixed and to give it to him. Our nurse Maria came in and he didn't know where he was or even who I was!!! He just kept shaking his head and crying no he didn't know anything. Maria got a cold cloth and wiped Owens face, the doc was paged and the room was a buzz with people. Owen finally did snap out of it. It was really scary. I was crying but I did remain calm. I know the last thing Owen needs is to see me freak out. I called Chris after though and told him to bring the kids somewhere - I needed him up at the hospital, I just needed someone else there, I could feel myself breaking. Owen started to have diahrea and was losing control of it. We had to change his sheets and clothes 5 times. We decided to put him in Depends, until he could function normally again. Owen's temperature got up to 40.8 (105.4) at one point.
At 2pm he was suppose to recieve the aspariginese shots but due to having such a high fever,the doctor wanted to wait until it was below 40. So he finally was able to have it a little after 3. He did get blood as well. They tried to spead up his blood to give him better circulation and help with his blood pressure but when it was increased it was burning him. So it had to go at normal rate. He had so many things going on all day it was awful. Dr. Souid still thinks it is the ARA-C causing all this nastiness. He said if it does this to him imagine what it does to the leukemia... it sure better be kicking some butt! He thinks now that the chemo is done we will see a big difference in Owen and possible go home tomorrow. It seemed like a dream but here it is 7:30 and Owen has improved. He still feels AWFUL but compared to before he has made big improvements. He is actually awake and watching TV right now and has had mini conversations with me and the nurses. So fingers crossed this is a sign that he is improving. I am exhausted. I HATE ARA-C!!! Owen is only scheduled to get it one more time, thank goodness! I wish he didn't even need that one!
Owen was suppose to start his counseling this inpatient session but he was so out of it. Since he should have 3 weeks off now, just doc visits we will need to schedule his sessions around this.
Hope you all have a great night tonight. We sure do need a brand new year for 2007. I sure hope Owen can have a great new year and begin to be a boy again.
Happy New Year
**** Sunday Morning *******************
Owens night did not get any better. He continued to burn up with fever and throw up. At one point his fever was 40.4 (104.8)!!! At 2:30am he was getting the chills and just trembling. His blood pressure was dropping... not a road I like to go down. The nurses pushed fluids to help raise his heart rate. AFter pushing 600cc of fluid over 20 minutes he seemed to stabalize. It was a very sleepless night.
The doctor decided to start him on antibiotics just in case he does have a bacteria, especially on the look out for sepsis which is common with the ARA-C. He was started on Vancomycin, Cipro and an anti-fungal Voriconazole. So he has his last chemo going now (from 8-11) and the anitbiotics. So unfortunately it meant stating a peripheryl IV. He did well will it, but he is so out of it that he didn't react alot to getting it. He is hooked up to a blood pressure machine now to automatically monitor his pressure and also the osocymilator (sp?) for his oxygen rate as he is low there as well - he is hanging at 92 stats (should be 100). He may also get a blood transfusion today. He is 8.9 and they usually transfuse at 8 but considering all that is going on with him they may transfuse early.
2006 has not been a good year for us. I hope and pray 2007 is better, and starting the year off inpatient is not a sign of another bad year!!! Both Brooke (wife) and Detria (girlfriend) are working tonight so maybe he just needed to ring in the new year with some of his favorite girls.
I will let you know how our day progresses.
Saturday, December 30, 2006 11:23 AM CST
Our Texas Roadhouse dinner was good but bad. I went and picked it up and when I got back to the hospital Owen was missing half of his! He had ordered the Steak and Ribs combo and had no ribs! I called and they 'knew' who I was right away with the missing ribs. They 'offered' to have me come back and pick them up. AH... NO. I told them my son was in the hospital and I was not making a big Uturn to return AND have to PAY to get out of the garage again. They went and got the manager but he said their was no way they could deliver it. So they are sending me a certificate to compensate me for my troubles. I will be interested to see what they send, their compensation should include the 1/2 dinner I paid for and didn't recieve AND their i'm sorry portion :-)
Owen was right though. He thought we need to order last night in case he didn't feel well after the chemo started and wouldn't eat. The chemo started at 8pm last night. He was asleep by 9:30 and is just now waking up at 1 in the afternoon. He basically woke up for the bathroom. He has gotten sick twice and now has a fever of 39.2 (102.6). They did culture him just to be sure but most likely the fever is from the ARA-C. He just feels AWFUL!!!! Dr. Souid was in and he said it will be a wait and see. That he won't send Owen home after completing chemo if he is this sick and out of it.
I will update more later if anything changes.
Friday, December 29, 2006 6:05 PM CST
Room 7604 phone 464-3683
Owen passed counts so we are back on schedule to recieve the ARA-C - yeah that is the big scary one! Zarina has already ordered the Vancomycin antibiotic to start next thursday so we just right on it again and hopefully ward off any infections and illnesses again!
We arrived at 3 and got right in our room, Owen has still not started the chemo yet. He has to be hydrated for a couple of hours before chemo and the IV fluids weren't hung till late. The chemo is set to start at 8pm. It will run for 3 hours every 12 hours for 4 doses. Then following that he will get an aspariginese shot 6 hours following the last chemo start (2pm). So it will be some time time Sunday afternoon we go home.
Now I want to take you back to last night. I had just finished changing the sheets on our bed and was bringing laundry downstairs. Tyler and Jake were in my room 'helping me'. A few minutes later I heard Tyler crying and he came down the stairs. I turned as he walked into the kitchen and blood was flowing out of his mouth!!!! He had a cut on his nose - which really was just reopening a cut he had - and somewhere in his mouth. Jake came down to tell us Tyler was hurt... yeah we got that... what happened. He fell off the bed. I finally got Tyler calm enough to look in his mouth and he was missing his top front tooth - source of the blood. I felt much better now. I got Tyler to suck on a cold cloth and we went back up so Jake could show us what happened and look for the tooth. According to Jake he only went off the end of the bed and hit the floor - no table or anyting - so he must have hit hard. We never did find his tooth. Poor thing - but he is soooo darn cute without his tooth. Hope it was getting ready to come out anyways or it could be along time of seeing the toothless grin!
This morning when Tyler got up Owen went up to see what the tooth fairy left .... oh no... i didn't do it!!!! I ran and got money and went up too. Owen was madly searching the bed with no luck. So we started to shake out the blankets and in the process I three the money on the floor on the other side of his bed. Ahhh success - found the money and the legend of the tooth fairy lives on...
I'm glad I stayed home today... although Each boy wanted mom to themselves so things got crazy for awhile. I attempted to help Tyler with his new PC game but since I stink at these things I only managed to make him mad... so it was a good/ bad day. Tyler was very upset when I was leaving. He saw the suitcase and my coat on and he sat down with his legs and arms wrapped around my leg crying. I finally pried him loose and sat him on the counter for a big hug good bye. Jake wanted to know how many days - I said 2 - he held up his fingers - 'this many?' I said yes - 'Oh OK' I think it makes a big difference that he understands I am going but it is not long. Tyler just knows I am leaving...
I am off to Texas Roadhouse to pick up dinner - comparing to Outback - so sounds like a good dinner tonight!
Have a good night.
Thursday, December 28, 2006 6:46 PM CST
Well it was a LATE night for the boys. At 11:00 they had to go up to bed in Owens room. At 3am Owen came into our bathroom in our bedroom which woke us up. Yes - they were still awake!!! I told Owen they were to go to bed NOW! I went in a few minutes later as I heard them still talking. Sure enough the Nintendo DS were still out and in use. So they had to give them up and were told no more - time for bed!!!! Dan came and got me several minutes later that Owen was crying and needed me. I went in and he was crying complaining his heart hurt. He was getting quite upset. I knew it was most likely due to getting in trouble and he was just upset. I did the Dr. Dubowy hypnosis with him ( the rock and balloon trick ) and sure enough he calmed down!!! So they finally settled in and went to sleep.
Owen needless to say was very tired today. He has slept most of the afternoon and is still sleeping!!! So great - sure hope he goes to sleep tonight!
Jake and I played some board games tonight while Tyler played his V-tech. Jake has gotten quite fond of playing games. We played 'I Spy - the board game' and 'Dinosaur Bingo' he really loved that one - I think we played 15 games of it!!!!
Tomorrow I will access Owen and take a blood sample in early and hopefully he can start his chemo.
I will keep you posted - have a good night!
Wednesday, December 27, 2006 7:06 PM CST
A good day today. So glad I did take Owen yesterday he was feeling really good today. He worked with Miss Heath and she was so kind not to leave him any homework for the remainder of the week!
Tyler, Jake and I sang songs on the Karaoke machine tonight. Ok - I sang and they laughed at me. I know they just thought I was silly because I KNOW I am a great singer LOL!
Owen is having his friend Dan spend the night. Time to have someone else see all the good Christmas stuff!!
I have a huge stack of boxes to burn and just about everything has been put away. I feel like I have found my house again!!! I did notice that the Barney school house and Fisher Price Farm made it up from the basement. I had stuck them down there because they got a new castle and Diego Rescue center so we didn't really need all these 'houses'. But Jake informed me today that no we did still need them and I shouldn't put them away because he is a little boy and he plays with them!
I took Friday off so I can have some more time with the boys on their vacation since I spent most of yesterday at the hospital. I figured if we go in I had the morning with them, if we don't start chemo then I have all day to hang out.
Have a good night!
Wednesday, December 27, 2006 5:11 AM CST
We had a wonderful Christmas!
Started with Grandma Bonnies on Christmas eve. It was alot of fun for the kids playing with PJ. Jake and Owen were all over Alexis all night giving her all kinds of love and helping to feed her. I of course took lots of turns snuggling too - finally got my little girl! It was a very relaxing night and lots of time to visit with all of the family. We exchanged gifts later in the night. Jake was so good about waiting. He would ask every once in a while when he could have a present, but would go off on his way when I told him in a little while. Once the toys were out the kids were in their glory! We left a little after 11 I think. I know we were into bed at 12:02, just in time for Santa to arrive. Owen couldn't sleep. He kept waking me up telling me he heard something downstairs, we would go to the top of the stairs and listen, nope nothing. Finally at 2am when we didn't hear anything - I told him - just go down and see if he has been here, maybe you did hear him earlier. So down he went and sure enough the stockings were filled and presents were under the tree! (We had snuck everything up earlier as we were putting the regular presents under, so it was easy to quickly fill the stockings and put the Santa presents under while Owen was getting in bed.) Now Owen couldn't sleep because he KNEW his presents were down there!!! Alas he fell asleep.
I was the first awake at 8am. Chris was up shortly after. We made coffee and hung out waiting and waiting and waiting. Finally at 8:45 Tyler was up, so we woke up Jake and Owen. Imagine that having to wake our kids up!!! From there on out it was a blur of wrapping paper and squeals of delight.
Papa Fred and Grandma Lea were out later morning so more presents and lots of play time as they jumped from one thing to the next. Later Grandma Pat, Uncle Steve, Papa W, Grandma Lee and Great Grandma Mary were out for more celebrations and eventually dinner. It was a really nice christmas!
Tuesday was back to 'normal' as I attempted to find the bottom of our house. I was up early to access Owen and take his blood in. Miss Heath was out at 10 for tutoring. At 11 the hospital called and Owen's platelettes were too low to start chemo (45 and need to be 75), but his blood was 7.7 so he was in need of a transfusion. Either to bring him in then or wait until wednesday mornining. I opted to bring him right away, he started feeling sick from being low.
While Owen was getting blood his eyes started to feel funny. He said it was like they were melting and he couldn't keep them open. Zarina and the nurses came in and checked him out. No hives, lungs sounded clear. Just to be sure Benedryl was given. Owen was getting upset that his eyes hurt when Dr. Dubowy came to the rescue. He had Owen lay back, (his eyes were already closed due to how they felt) and raise his arms out in front of them. He pretended to tie a rock to one hand and helium balloons to the other. Sure enough one arm was lowering and the other rising. He then cut away the helium ballons and his arm started to come down. Next he tied helium balloons to his eyelids and sure enough his eyes opened and he felt so much better!!! It was amazing. Nice relaxing hypnosis!!! Owen had Zarina do it a second time for him and then he felt really good. We will definately have to try that again when Owen starts to get upset. Owen did it to me after wards. One one arm did indeep fall with the weight of the 'rock' but my other arm didn't rise, but it did fall as he cut the ballons away. How incredible is that!!!
I will retest Owen's blood again on Friday. It should go one way or another. We will either start chemo Friday or probably need a platelette transfusion. Owen fell sound asleep on the way home from the bendryl and slept until 8pm, so yeah he was up late!!!!
Have a good day!
Sunday, December 24, 2006 11:26 AM CST
We want to wish you all a very Merry Christmas!!!
Thankyou for continuing to follow our story and all of your support. We would not be able to make this journey without all of you.
We are very thankful for having our family together and healthy for this holiday, it will be a very enjoyable one!!!!
Tonight the festivities begin at Grandma Bonnies house. Tomorrow the day will begin early I am sure. Papa Fred and Grandma Lea will be out in the morning. Later Grandma Pat, Uncle Steve, Papa W., Grandma Lee, and Great Grandma Mary will join us for dinner.
I am sure I will not update tomorrow so I wanted to say thankyou to everyone from the bottoms of our hearts and MERRY MERRY CHRISTMAS!!!!!!!
Saturday, December 23, 2006 2:37 PM CST
Owen did awesome on his MRI!!! He thought it was a piece of cake - but he NEVER wanted to do it again. It was just hard to lay there for that long without moving he kept getting crampy. They did his hips first. This took around 1/2 hour. They then let him get up to go to the bathroom as they could 'see' his bladder was full!! It was good timing as his hands had fallen asleep. So then back on for his knees to his ankles. This was better as he could move his arms around a bit when they weren't taking pictures and reposition them. When the machine was on taking pictures it was loud!!! I sat in the room with him, but he never got nervous or claustiphobic at all. I was worried as everyone was telling me what a scary feeling it was to be inside the machine. So once again Owen made light work of the test!!! He was done in 1 hour and 20 minutes! They had slotted out until 1:30 for him incase they had problems due to him being young. Wow - he was done at 10:15!!!!
We went up to 5C after for a checkup and find out if he needed blood. Great news there too! His counts are already rebounding. His WBC was up to 3.3 with 85percent Neutriphils so he is still making more cells.
So his ANC is over 2000! His blood was 10.2 and platelettes 101. So his platelettes did go down alot (were 200), so that will most likely be the deciding factor on tuesday. He needs 75 to start the ARA-C He didn't get the mouth sores this time after the chemo, so wow I am tingiling it went so well and we are on a great streak here for Owen handling the chemo! Looks like he should be feeling great for Christmas, how happy are ALL of us!!!
Jake had his concert today and was so cute. He was quite nervous until he spotted Grandma Pat, Papa Fred and Grandma Lea in the stands. They that beautiful smile popped out on his face and he was waving like crazy.
Today is shopping day for Chris, he LOVES to wait till the last minute, I am surprised he went today and not tomorrow. I got Christmas groceries and am prepping as much as I can today. Tomorrow will be a cleaning day and then off to Grandma Bonnies tomorrow night for the beginning of Christmas celebration. We started the tradition last year to have Christmas with Grandma Bonnie, Aunt Susie, Aunt Shelley, Uncle Pete, Pj and new this year Alexis. It just makes for a much easier christmas day and we get to visit so much more this way.
I can't wait till Christmas. I think Jake will drive me insane! Everyday he wants to open his presents and keeps telling me it IS Christmas why won't I let him have presents!!!! 'A few more days' is not in his vocablulary.
Have a god day!
Thursday, December 21, 2006 7:26 PM CST
Another good day. Owen felt good all day. He still has lots of color, even in his lips which is usually the tell tale sign that he is low. So I think he should be good on blood tomorrow. It will be a long enough day with hitting the road at 6:30am!
I went to Jakes swim class today. Since I can't go to his concert tomorrow I thought I would make special and go watch him swim. I have not seen him swim since he started at the Y this fall. He would not even go in the pool at first - he would just sit on the bench and watch. Mom has been telling me how well he is doing but wow what a shock! I walked in and he was swimming the length of the pool (with bubbles of course) and just grinning ear to ear. "Hi Mommy - look at me!" I'm surprised he didn't drink half the pool as he kept yelling for me to watch this. Swimming this summer will be so much fun now that I won't have Jake super glued to my neck! It was just great seeing him. The downside was I got a $10 parking ticket while I was in there. The Y parking lot was full and I was already late (i know me late! LOL) so I just parked in the no parking zone. Heck it was ONLY for a 1/2 hour. Mom also got one. She hadn't put enough money in her meter. So Jakes swim class cost $20.00 but then again it was 'priceless'!!
Tyler ended up having a bad day at school. He did great up until after the Christmas Party. So whether it was over stimulation with the party, he was 'due' for a bad day or what who knows. Hopefully it was a fluke day. He was sad when I talked to him at home. He looked right at the ground and just sucked his thumb. Usually he will have a 'smile' on his face or just walk away and ignore me when I talk to him. So hopefully he was sorry for slipping back to the bad day.
The boys received a Christmas present to day from my very good friend Lori (Aunt Lori, Uncle Dave, and beautiful little Natasha). The boys absolutely love it. It was a big box of music instruments. (Drum, cymbols, triangle, bells, on and on there was like 10 things in it!) So we had lots of marching parades and alot of fun with that tonight! Thankyou very much!!!! (Although Chris said he 'promises' to get Natasha the same when she is old enough - haha)
Have a good night!
Wednesday, December 20, 2006 6:01 PM CST
Just a quick update to say all is well. Owen is feeling good. He went into a little depression today, not sure what caused it. He was IM'ing me at work and all of a sudden he was asking me to come home - he needed me and didn't feel good. Mom called to say he has been fine and that I didn't need to come home. He got on the phone just sobbing and said he didn't know why he was crying he just needed me.... oh it tears me apart when he does that. We did hang up and a few minutes later he was back on IM to say he was OK and that he would see me after work.
Tyler had another good day at school so the missed phone call yesterday didn't matter. He is on a roll 5 good days! Maybe he was in pain with the blockage... Maybe he was having a bad week... maybe sometimes it is due to me being gone... I don't know but I am happy for the good days he is having now!
I FINALLY got to watch the Survivor final episode - mom had taped it for me as chance I could sit and watch a show for 2 hours are slim to none! I am happy for Yul, I had wanted Ozzie, but was just glad it was from their foursome!
Have a good night!
Tuesday, December 19, 2006 8:31 PM CST
Owen had a good day. He looked much better today with a pinkness in his cheeks. He watched a movie tonight 'Molly: An American Girl on the Home Front' It was all about a family and living through the world war. This brought on lots of questions about war. How do you win? Does the winner get what they want? Will we have another world war? Would we have to go to the basement when the sirens went off? He was so interested in the whole thing. He wanted to know why the war was still going on in Iraq. Such great questions and in the end my biggest response "War is suppose to accomplish alot of things but it seems like mostly it causes heart ache for alot of families."
Tyler had another good day at school, although I missed his call at work! I ran downstairs for a sec and didn't bring my phone - he left me a message though - so cute! I made a big deal when I got home and told him I heard his message and good job! He was very pleased, so hopefully he wasn't upset that I missed it.
We practiced Jake's chrismas songs that he will sing at his concert on Friday. He was so cute just beaming through them and doing all his actions. I will have mom tape it so I don't totally miss it!
Have a good night!
Monday, December 18, 2006 7:07 PM CST
Along day at clinic. We arrived a little late (8:15), Owen was slow moving to get out of the house - way too early for him! He slept the whole way there and was basically sleep walking into the clinic. He was quite pale this morning - as soon as everyone saw him they were like 'OH my - are you here for blood??' Nope - we are here for chemo. The accessed his port and did a CBC to check his counts and then off to get his checkup. He basically slept through Zarina's exam. He has mouth sores starting.. he doesn't feel them yet but they are visible. He always seems to get these after Methotrexate - even at the reduced rate that he receives.
I talked to Zarina a bit about the therapist that we want to pursue it again and I had a list of names from our pediatrician. She suggested the hospital therapist Ruth. I have met with Ruth before on the parent sessions but didn't realize she dealt with the kids too. Zarina said she wasn't surprised, Owen has been through ALOT. All the kids go through alot coming to 7H and 5C but Owen has been in more than most. Between having a special needs child and a leukemia child our plates are full and even though I arrive every time with a smile on my face she worries about all of us!!! How wonderful is that! So she would talk with Ruth and have her come visit us. Zarina gave me a book to read 'Shelter from the Storm', it is all about dealing with having a child with a life-threatening disease. I am already a couple chapters in and although it does remind you of the possibility of losing your child it is done in a realistic way. It is done to remind you to enjoy your child today and not to lose focus on creating memories with them and not focusing only on their sickness and the cure. It can definateley be hard reading at points but it also talks of the issues and emotions felt by the child, the parents, other relatives and friends. All in all I think this book will be very good for me.
Ruth came in and we chatted for awhile. She thought it was really good that Owen does open up sometimes to me to tell me of his anger about being sick and even being made at Jake because he is the only one without something wrong with him. Owen wants to talk with someone so I am feeling good and hope this will help him deal with his anger. He is good for the most part but he has some major meltdowns and issues. So Ruth is going to meet with Owen next Wednesday if we are admitted on tuesday for the ARA-C chemo on the 26th. ( It will depend on if his counts are high enough )
Owen received his 3 pre-meds to reduce the chance of reactions to the Etophous chemo. Chemo was started a little after 10. Owen was still asleep and now that he was medicated with more sleeping meds he probably wouldn't wake up! A little bit later we were told that Owen was 7.8 hemoglobin. They transfuse at 8. So today would be a full day, after chemo finished he would get blood which transfuses over 3 hours. Owen finally woke up at 12:30, he was quite groggy and wouldn't eat, he did want a drink but that was it. So he watched The Wizard of Oz and just relaxed. Even by the time we were leaving he was still very quiet. He told me in the car he was just feeling queezy, but by the time we were home he was feeling much better.
Friday we have to be there even earlier - that should work out well with Owen!!! We need to go to the lab first for blood work (at 7:30) so we can check his counts again and see if he needs another blood transfusion. So the results should be back by the time he finishes his MRI. That appointment is at 8 and it can take 1-2 hours. So we will see what friday brings.
His WBC is 1.1 - not sure what his ANC (immune system) was it wasn't back earlier when I got his counts, but with only 1.1 WBC chances are it is low and Owen is now on isolation again.
Tyler has had 3 good days in a row at school. He gets to call me each day that he has a good day. He also now has the FM system in place at school which seems to be helping him be more involved or pay attention better. Hopefully his good days continue. Thankyou everyone for your advice with Tyler that you are sending me - I will put it all to good use! I am also amazed at the people who have told me they know kids who also had this 'blockage' in the intestine that he has! He did have a big bowel movement this weekend but I am continuing the miralax for a bit longer. It is hard for me to judge if it is gone, so as long as he seems to be tolerating the Miralax without causing issues the other way - I will keep him on it a bit longer.
Have a good night!
Sunday, December 17, 2006 9:18 PM
As you probably guessed we made it to Papa Fred's and Grandma Lea's Christmas party. The house was packed with lots of friends and family. It was great to see everyone catch up and share a lot of laughs. Everyone was wonderful and I got a lot of hugs and kisses for support. I received so many comments on how I am so strong and amazing. I can't tell you how much the last several weeks have rejuvinated me. I WAS failing. I knew I was failing and I couldn't stop myself from spiraling down. So I am feeling strong again and needed to have these good weeks. I appreciate all of your support for me and my family - knowing all of you are out there for us is one of my sources for my strength and I couldn't do it without YOU!
The boys had a great time playing with all the kids, it is amazing how many kids there are now! For the most part the kids were all great, I had to get called in to 'referee' a few times when things were getting out of control. Jake -my little tattle tale was always out to tell me when i was needed!
Latter on the music was jamming and they were dancing up a storm. It was just too funny watching them all 'break-dance'. They danced into the night and to a bunch of moans at 12:30 we headed home!
First one up was me at 9:30!!! I couldn't believe it was so late, I haven't slept that late in a long time! Tyler was last to get up at 10:30.
Owen received 2 platefuls of homemade cookies today from Sacred Heart church. THANKYOU!!! Of course he is sharing... they are absolutely delicious.
Today we worked on replacing the invisible fence. Chris looked for several hours yesterday to find the break. Our dogs have been all over the neighbor hood the last few days due to the break and I don't need any more Dog court appearances! LOL
So today Chris said we were just going to replace it. It was 10 years old and this was the third time it broke in the last month. Thank goodness it has been warm and the ground is soft. He did the cutting of the lawn and I did the insert of the wire. Darkness came before the wire was finished being inserted into the ground. Chris had finished cutting though so we just left the wire on top of the ground. It was a nightmare finding the old wire that went under the driveway as we needed to just tie into that since the driveway is now paved. All set - it is now 5:30, we plug it in and ARGGGGGH it is still broken.
I had to quit and go in the kids were getting restless. I ran in to grab a pizza for dinner. Chris continued to work until 8pm with the lights of his truck. The wire was actually broken under the driveway! It had been spliced together in the middle so whether this was just old and corroded who knows, but he had to dig up the ground to find the beginning of the pvc pipe and then feed a new wire through it. What a nightware, but it is done and our dogs will be home again.
Owen is very tired to day and very sore. I told him I am sure it is from all his 'moving and groving' last night. Using all those dormant muscles again. We did some leg exercises - aka - mom pushing his legs in and out to stretch them. But that made them feel better. He is like 90 percent asleep right now and should sleep good tonight.
Tomorrow will be an early day. We will be on the road at 7am for his doctor appt. He is getting 2 chemos, Ethophous (1 hour), and Cyclophosphamide (30 min). So sounds short but Owen has to get pre-medicated for these chemos due to reactions he has had, and has to get fluids before they start to so it will be more like 5 hours to complete.
Have a good night!
Friday, December 15, 2006 6:31 PM CST
Slow going day but was okay. Owen was achy again this morning and took a nice long shower early when I was up getting ready for work. He laid back down after. I told him he needed to get up and moving about, maybe part of his aches are from low activity. He did get up later and ate but got sick shortly after, and was just feeling up set. He did manage to work on his homework. He was going to go see Charlottes Web tonight with Grandma Pat and he was trying his best to get his work done so he could go if he was feeling up to it.
Tyler's school called and he had a very bad diahrea. He has had this everyday this week shortly after getting home from school, so I decided it was time to see a doctor. He has had no other symptoms so it was hard to say if something was goin on. Well the verdict is in ... get this... he is CONSTIPATED! I was soooo confused. But the doctor had me feel it as well. There was a big blockage in his intestines, so the rest that is not constipated backs up and eventually squeezes by and is loose in order to work around this blockage! Sorry if this is too gross!!! So he is on Miralax to try and break this up and then hopefully all will be normal.
I arrived home and Owen was looking hopeful to go to the movies but Grandma and I agreed he had not been acting too great all day and it was best to cancel. If he is feeling better tomorrow then they will go to a matinee. Shortly after Grandma left he started feeling yucky again so it was a VERY good decision. He seems to be feeling fine now but it has definately been an up and down day.
I attempted to clean out the play room some - make room for the new stuff coming soon! These boys just have way too much!!! And of course as I dig stuff out to put away in the basement that they haven't touched - it turned into their most favorite toy and I couldn't put it away! I should know better than to clean out when they are home.
Tomorrow is Papa Fred's and Grandma Leas Christmas party, so if everyone is feeling well we will all go, so if there is no update you know we were able to attend! The boys have a blast with all their cousins and its nice to see everyone in the family, and it gives me a break since the kids entertain themselves for the most part.
Have a good night!
Thursday, December 14, 2006 7:16 PM CST
Owen felt nauseous last night and took a benadryl but then dozed off and slept through the night. It was me who was awake at 2:30 and couldn't fall back asleep so I unpacked and did a few things and finally went back to bed at 4am and went right to sleep only to hear my annoying alarm at 6:30!
Owen felt good in the morning but later morning started to feel yucky and went up to bed. At first we thought it was skirting his homework but by the time I got home he was sobbing with how yucky he felt. He had no fever but was just achy all over. I did call the doctor and she said it wouldn't be from the chemo but Owen has still been fighting off a cold and could be that settling in that was causing his pain. She gave me the ok to give him Motrin instead of Tylenol. Usually he can't have this because of low counts but he is still good. He will probably crash over the weekend or more likely early next week. He did feel better after the Motrin kicked in.
Jake, Tyler and I decorated cookies tonight. I had told Tyler this morning if he listened at school and did his work he could call me today and then when he got home we would do cookies. So he was great at school today. Very happy to call me! When I got home I made a HUGE deal over him doing all his work at school. He was jusmping up and down and clapping and asked for a high five. Then both him and Jake started in asking to do cookies. You bet we can! Owen tried but just didn't have the energy to do them. So the three of us did a few and then they were done and just wanted to eat! So we can do some more tomorrow.
Other than that all is quiet. Have a good night.
Wednesday, December 13, 2006 1:18 PM CST
We were released! Owen was 'almost' to the level he needed to be. He was .22 and needs to be .2 to get released. However the doctor talked with me and as long as I was comfortable with leaving at this level and could keep Owen drinking she would allow us to leave. They were in desperate need of beds on 7H and with us using 2 due to Owen's isolation, and another isolation on the floor beds are hard to come by. There was a little girl who had been waiting all day in the day room waiting for a room. Although this may sound like a poor excuse to release us we were VERY close to the level and I had no problem with going. It is just very sad that so many children are in needs of beds on a cancer floor! There were even kids down on the 4th floor due to no room on the 7th. So we are home and it feels good to be here. I will go into work a late so I have time to see Tyler and Jake in the morning. Tyler had another rough day at school. I think I need to find a way to spend more one on one time with him. To work with him and give him some extra loving.
Glad to be home - good night!
*************************************
Owen had a good night. He did get another headache around 10:30 and took some tylenol. He did manage to be awake enough to see Brooke (barely though) and got a big hug in.
Today he has been wonderful. Daddy came in to see him for a bit and play some games before heading out. The music therapist was back and Owen was eager once again to rush off and participate. She again came back to the room after class to give him a private lesson. I guess I should look into some private music lessons at home for him too. At least then he could have them even when he has low counts. He has just been totally into this music up here. I hope they keep the program.
He is off to tutoring now. They are saving him to be the last student. Then he still has to put the gown on but can go to the classroom VS having to stay in his room, and then she can have the classroom cleaned after he is done. So he has just had a busy and great day.
His level at 10am was .34 (it was 1.0 at 4am) So we may still make it out of here today. Next level check is not until 8pm though so if we are discharged it won't be until after the level results come back from that. The 10am reulsts took 2.5 hours so hopefully won't take that long to come back!!!! But if not tonight most certainly pretty early tomorrow.
Owen has to return next monday 8am for his Etophous and Cyclophosphamide IV chemo's. They chemno itself runs an hour and 30 minutes but due to the pre-meds, and pumping him with fluids prior to starting it will be most of the morning.
The MRI is scheduled! It is next Friday at 8am. I can't believe we got that in so soon. I am very happy as I want to rule out AVN, or start treating him to stronger bones if need be. Don't know how long it will take to get the results back. Unfortunately it means I will miss Jakes 1st Christmas concert! He is that morning as well. Mom and Nicole will go and I will have them tape it, but I sure wish I could have gone. Always missing something somewhere to get everything taken care of!
I will do a quick update if we are going home later.
Tuesday, December 12, 2006 7:57 PM CST
All is quiet. Owen started having a bad headache last night and was feeling nausea but after taking a benedryl and falling asleep he had no problems. He was so knocked out that he didn't even realize it when Brooke came in to take care of him. He was asleep on his feet going to the bathroom when she came in, so she settled him back to bed and started to take his vitals. She commented on how big his arm muscles had gotten since she saw him last to which she got a snore for a reply... He was bumming this morning that he missed her.
Today has been a good day. Owen joined in with the Music therapy again. When I opened our door this morning ( well okay 10:00 Owen was awake), we heard the teacher - Owen jumped out of bed and couldn't wait. Once the other kids got tired he came back to our room with her and did more. He worked with the school tutor Mary Ellen for a while too. So a good start to the day.
I left when the music therapist came into our room. I was leaving to go get 'Barnyard' and some things at the store. At first I couldn't find my keys. I had them yesterday when I went back out to the car to load up our stuff, but they weren't in my coat nor purse. I finally decided to walk out to the car fearful I would see them locked inside. So out I went and sure enough - there they sat in one of the kids booster seats, oh yeah and the car was UNLOCKED!! Yikes I am so lucky that the car was still there!
So we have watched Barnyard twice and now are settling in to watch a Christmas special.
Have a good night!
Monday, December 11, 2006 3:43 PM CST
We are settle in. Our room is 7602 and phone number 464-3681.
We arrived around 10 but they didn't have our room ready yes. Doctors were in the middle of rounds so it would be a bit. So Owen and I went to the cafeteria for breakfast. We returned but still no luck - they put us in the treatment room as Owen is still on isolation. So Owen and I played some battleship as we waited. They did get him accessed but no pump was available yet to hook him up. Finally a pump was found to start getting his fluids going. Owen has to get double fluids prior to starting chemo due to how hard it hits him. Owen was ready for lunch now.... that's right keep him eating before he shuts down.... so back to the cafeteria and he picked out spagetti and meatballs. He did end up putting on a gown and gloves and went to the play room where the music therapist was working with another child. Owen jumped right in and started using the triangle. Then he moved on to the drums. For one of the songs he was able to play BOTH of the drums and triangle!!! Lastly he worked on the keyboard with the teacher. The teacher was quite impressed with Owen's 'musical' ear and knowing when to play and picking up on the different tunes. Owen had wanted to try out for band when entering fourth grade and that has had to wait... so maybe he does have the ear for it! She will be here again tomorrow and Owen is already looking forward to it! This is the first time she has been here since we have been up here. She said she has only been here a few weeks.
So our room was clean and ready to move into at 3:30. It must be a nightmare for them up here. There is another family who has to be on isolation as well. So to re-arrange the floor to accomodate for us takes time. Owen was fine and happy not to be confined to his room. His chemo (Methotrexate) was started at 4 and will run for 24 hours. Owen sent me AGAIN to the cafeteria for 2 english muffins with cream cheese. Like I said... eat eat eat... he usually always shuts down when getting this chemo so I am glad he has a VERY full belly.
Tyler had a so-so day at school. Sounds like he started out well on his class to class progress sheet but then last class he was very disruptive. When he got home Mom checked his sheet so when Tyler asked to paly V-Tech she would not let him. He put his hands over his face and then went up to his room and shut the door. When he finally came back down to ask for a snack she read him his note and told him that is why he had no games and no movies.
Have a good night!!!!
Sunday, December 10, 2006 4:31 PM CST
We had a very nice time at the University Hospital Christmas Party. They had a wonderful buffet lunch, face painting, arts and crafts, letters to Santa, a DJ and dancing and of course Santa! We got to visit with friends from 7H in a non-hospital environment so even better!! They had a hula hoop contest, and Owen entered. I was very proud of him for trying although he only got it to go for a couple of rounds. Some of these kids are professionals!! The two finalists had to walk forward, backward, jump and even go down to their knees and back up - all while keeping it going - amazing. The girl who won has been the champ since she was 3 years old (she is now 17). Owen continued to practice after the contest and has gotten it to go quite a few times. He wants to get a hula hoop now so he can practice and beat Tori next year! He has alot of work ahead of him, but I would love him to practice and get the exercise - it would be really good for his hips.
Jake was nervous of Santa until he sat down and then it all melted away as he chatted quite a bit about all the dinosaurs he likes! Owen cuddled right up to Santa as usual. Tyler did not go to the party. He was being very naughty in the morning and not listening so I left him home. He was sad, and when we got home he asked about HO-HO, but I told him Santa was all gone now, he didn't get to see him for not listening. He covered his face and
sat down. Maybe this will help him understand that he HAS to change his behavior. He no longer will act as he pleases and get to have the fun.
Today we headed out to Breakfast with Santa at the Springside Inn. We met up with Grandma Bonnie, Aunt Shelly, Uncle Pete, PJ and baby Alexis. The kids were great and ate pretty good. They got to spend quite a bit of time with Santa so it was a great time. They all came
back to our house after to give the kids some play time and I got lots of snuggle time with little Lexi! My boys just adore her and also couldn't keep their hands off her. We need that little girl time.
I will get Tyler and Jake off to school in the morning and then Owen and I will head up to the hospital. I will update with our room information once we are settled in.
Have a good night!
Friday, December 8, 2006 7:15 PM CST
All is well. Owen finished up his schooling for 2006 today. He now has 3 weeks of chemo in a row (2 of them inpatient), so his counts will be too low again to go. Hopefully he will recover nicely like last time and will once again return. So Monday morning we will go in and start the 24 hours of Methotrexate chemo. He then has to reach the magic level of .2 to be released so 3-4 days we will be in.
Tomorrow is University Hospitals Christmas party for the cancer children. It is at the Holiday Inn at Carrier Circle. I have heard all good things about the party and should be fun.
Tyler had another rough day at school Thursday. It was the worst that he has ever been. He had to be removed from his social studies class and even back in his regular classroom he wouldn't listen and was kicking and spitting at the teachers! What can I do???? Any suggestions. He KNOWS when he gets home how upset I am. So much for the thought that it is due to me disappearing into the hospital when he acts up. I have been home for 3 weeks! If that is the case what is going to happen next week when I am gone!!! I know he understands that he acted bad but it doesn't seem to stop him. I have even thought he gets 'lost' in the General Ed classes and acts up but if he does it for his special needs classroom as well that leaves that out too. I am just at a loss as WHY he is acting up. If anyone else has had success with determining what is wrong please help!!!!
We are settled in and watching Rudolph and then Frosty. I just love the Christmas specials.
Have a good night.
Wednesday, December 6, 2006 6:04 PM CST
Owen did not go to school today. He had another restless night, mostly due to not being able to breathe being so stuffy. When he got up he wasn't feeling great, but after being up a while and taking some cold medicine he seemed to be feeling good. We don't want to push him when he is not feeling great, and let him get his rest so his body does not get run down and end up delaying treatment. He seems to be feeling good now and I imagine it will be back to school tomorrow.
Tyler had a good day at school so he was rewarded with being able to call me. He is allowed to call me each day he behaves well so hopefully this will be some inspiration to do well. He did have an awful diahrea at school and his cheeks are pretty red tonight so he is brewing something.
Jake had a good day at school and has the 4 girls in class fighting over who gets to sit next to him! What a little casanova already!
Have a good night!
Tuesday, December 5, 2006 7:13 PM EST
Owen went back to school today but I don't think he had a very good day. He was tired and even went to the nurse for his tummy and had a benadryl. He had a restless night and didn't sleep much. He was very achy, not sure if it is due to the possible AVN or from the cold he has coming on. He was very stuffy tonight and having a hard time brething. He is getting the chills but so far no fever. It seems Jakes cold is spreading.. Tyler is starting on a runny nose as well. Jake is playing and acting fine, but is still very picid looking. Ahhh yes things must have been too quiet we need to shake things up some!
We have finished dinner already and tubs are done so we are headed to bed to watch a movie and hopefully an early night for all.
Just an update on little Baby Donovan - giving him the remaining stem cells did not work so they are basically giving him chemo to try and hold off the leukemia as best as possible and give his family more time. Please stop by their site and offer some prayers for them. The pain going through their family is so great right now.
I have to give my boys an extra big hug and kiss and be thankful for what we have. My boys are so precious to me and I love them so much...
Have a good night.
Monday, December 4, 2006 1:48 PM CST
I accessed Owen this morning and took a blood sample. Mom called as I got to the Auburn Hospital and said that Owen was complaining of not feeling well and couldn't go to school. I got the lavs in and had the results back by 9, he needed blood. So no wonder he was grumpy. So headed out for a full day at the hospital.
Owen's x-ray from a week ago do show loss of bone density in both his knees and hips. This means possible AVN disease due to the steroids. An MRI and dexa scan have been ordered to further evaluate the bone loss and what this will mean for Owen. If it is AVN and is caught soon enough hopefully it can be treated (and steroids will be stopped). Many people end up receiving hip/ knee replacement due to this so hopefully it is NOT the AVN or it has been caught early enough.
Tyler has his Christmas concert tonight so we will run in the door from here and then back out to his concert. Hopefully he will not be too nervous being at the new school.
Have a good night!
Sunday, December 3, 2006 7:07 PM CST
All is well - I think I have 3 very tired boys from the busy weekend. Chris and I were actually home by midnight last night so that made for a very nice day today. We headed out to the Nucor party a little before two. Tyler, Owen and I skated a little bit but Owen took a couple of hard falls and didn't want to skate any more. They lined up to visit Santa and get a present. Tyler was thrilled as usual to see Santa!! Jake was back to being scared of Santa but once I got him close he did sit on his lap. The boys got freat gifts - Owen: Lighting McQueen Remote Car, Tyler: Legos, Jake: HOt wheels.
They have free play on all the video games so the boys were thrilled to play in the arcade room. Owen was very good about wearing gloves. Although his ANC is normal right now - I imagine this arcade is just full of germs. So I figureed it was just better for him not to touch them. They even had the crane game free. Each person was limited to 3 tries on their turn. There was a fake Cat in the Hat in there and Tyler was thrilled! Of course easier said than done! I did manage to grab it but it fell part way up but was now in a better spot to get it, but alas my turn was over. Tyler was just sobbing 'Cat in Hat.. Cat in Hat..' It was time to go... Owen was in line to turn his tickets he had won in for a prize. He had a HUGE handful as a lady gave him all of hers. As I took Tyler and Jake out (Ty still very upset)... I hear 'Ang.. Wait!' I turned around and Debbie Ryan and her son Sheldon were chasing us... They had the Cat in the Hat! Sheldon is good at the crane game and they felt bad for Tyler so Sheldon worked on getting it for Ty. Tyler was thrilled!!!! How sweet was that! Thankyou!!!
I went and got the car and waited out front for Chris and Owen. Pretty soon they came out and Owen had nothing. I said what did you turn ticket's in for?? He said nothing I got tired of waiting in line, and the sponge bob I wanted to get for Tyler to replace the cat in the hat was 1000 tickets and I didn't have that many. So I gave my tickets to Sheldon. Ok first off what a sweet heart to want to spend it on Tyler to make him feel better and then what a coincidence that he gave them to Sheldon who had given Ty the Cat!!! It worked out all the way around. He got in the car and was shocked to see Ty with the Cat so I had to tell him about Sheldon.
We are headed to bed now, it has been a busy weekend and the boys need to catch some zzzz's. Jake is running a fever (101.6) Owen thought I better get him to the hospital... as that's past his temperature to have to go. Jake has been fighting a cold for a while. I thought he looked off today, but he didn't have a fever. But alas it has finally broken through. He is still acting fine - just looks pale. I think we are ready for a few days of quiet.
Have a good night.
Saturday, December 2, 2006 2:25 PM CST
All is fine. Owen finished his first week of school and enjoyed it very much. He went to the nurses office twice yesterday complaining that his arms hurt but he didn't want to go home he was just sore. He called me just to let me know. I wasn't too concerned as he gets aches. After talking to mom we figured it might be from gym class. He played volleyball 2 days in a row and was hitting the ball alot. Hence using muscles that have not been used in a LONG time and he probably would get sore!
Owen had Thomas spend the night last night. Then off to the doctor's this morning for his flu shot. He was stressing over that but did fine. Back home and him and Thomas played more until Erica and Kevin came to pick them Thomas up. They ended up taking Owen too and are going to see a movie. So he is having a good weekend. It is so nice to see him have a stable immune system and be able to enjoy all these things!
Chris and I are going to his Christmas party tonight, should be a late one - ouch! Will pay for that tomorrow at the Nucor Kids Christmas party with all noise. LOL
I have another family in need of your prayers ( I have lots actually which is really sad!) This family is from Syracuse and we met them at University. Andrew Sleeth (11yrs old) had a bone marrow transplant at Rochester this year in August but relapsed in October. Due to the short time since his transplant they needed to figure out how to proceed. They have finally decided to repeat the transplant with his Dads marrow in hopes of sparking an attack on the leukemia since they are not a perfect match. They have a long journey ahead of them with many complications possible. Keep this family in your thoughts as they start another journey done this road... I have posted his website as well at the bottom.
Have a good night!
Thursday, November 30, 2006 8:31 PM CST
I have spoken of Baby Donovan before. This morning I sat at my computer and cried as I read that he has relapsed for the fourth time. He has had to deal with Cancer since he was just a few weeks old. While I don't know this family personally I have been following them for over a year now and have just fallen in love with him. He is the
happiest little boy and soooo cute. His family has been through so much, they recently had to sell their home in Indianapolis and have officially moved to North Carolina where Donovan and his mom Melissa have been for most of his treatement. They have a second son Dylan too. He is a wonderful big brother and Donovan adores him. They are very concerned for Dylan's well being as well and are considering therapy starting now to help prepare him. I think Dylan is only 3 or 4. Donovans options are very limited and mostly they are too keep him comfortable and at home with his family. This family has lost so much
and given it all up for Donovan and still Cancer will not let them be.
Cancer just sucks so bad....
Please stop by their site (link is posted at the bottom) and leave some words of encouragement. If you are able they are looking for help in bringing the rest of the family together again after Christmas for what may be the last time....
On our home front all is well. Owen had another good day at school. Tyler had a good day as well!!! He even got to call me to tell me what a good day he had!!! I guess he DID understand the no TB message yesterday!
Have a good night.
Thursday, November 30, 2006 8:12 PM CST M CST
I have spoken before of Baby Donovan. He has relapsed yet again. I sat here at the computer this morning and just cried. I do not know this family personally but have followed Donavon for over a year now. He has had to deal with cancer his whole life! His family has lost so much. They were forced to sell their home recently in Indianapolis and officially moved to North Carolina where Donovan and his mom Melissa have been for most of his journey. He is soooo cute and has a wonderful personality and is happy almost all of the time. This is his fifth relapse. His options are very limited now. They are going to try to give him the remaining donor cells which has a high risk of causing infection and GVHD (graft vs. host disease) because it is so soon after his 2nd transplant (77 days). Otherwise they will give him a few different chemos but it is mostly to keep him comfortable and allow him to stay at home with his family. This family has been through so much and given up everything for Donovan and still Cancer won't let them be. Cancer just sucks so bad......
Donovans link is at the bottom of the page. Stop by and give them some words of encouragement or to help with support if you can to help all of their family join them in NC to be all together one more time.
On our homefront all is well. Tyler did very well in school today and was able to call me to tell me how well he behaved today!
Have a good night!
Wednesday, November 29, 2006 7:23 PM CST
Another good day at school. Owen seems so happy. He is able to do things other than just tutoring school work at home. He was very excited to day and said he took keyboarding. So all these little 'extra' things that he gets when in school.
After school he went to Cayuga Elementary school with Pam and Samantha to visit his Multi-Age teachers. So that was a surprise for them and Owen was thrilled to go. He had to pull a prank on poor nurse Jane. He went into her office holding his belly saying he didn't feel good! Owen spent alot of time in her office but this time it was all in fun!!!
The long days are catching up to him though, he got very whiny tonight and I think he is tired. He went up to bed at 8:00 and is ready for a good nights sleep. He is still working out his schedule and breaking the habit of staying up late. He is trying, but it takes a bit. He was in bed early last night but was just tossing and turning and couldn't fall asleep. I think it was almost 11 before his body finally gave in! So hopefully tonight will be better than that.
Tyler had a VERY rough day at school. I even talked to him on the phone because he just would not listen. I thought things would be so much better for him now that I have been home for a while. So I am not sure what is prompting him to mis-misbehave. He was not allowed TV tonight when he got home and he wanted an ice cream cone and I would not let him have that either. He went storming off to his room and shut the door and stayed there about 45 minutes before he asked to come out. He has to knock as he has a child-proof door knob to prevent him from wandering the house in the middle of the night! So he knocks when he is ready to come out. He seemed better then and accepted that I was not giving in. So we'll see if this gets the message any clearer for him!!!
Have a good night!
Tuesday, November 28, 2006 6:12 AM CST
Owen had an awesome day at school. He got right up from bed. He ate, was dressed and brushed his teeth in 15 minutes! That has got to be a record - at least for Owen!!! It was very exciting seeing him go out for the bus. He was embarassed that we wanted to watch - but it was an exciting day! I did end up leaving for Ty's doc appointment before it came and Grandma had to hang in the garage Owen wouldn't let her come out with him!! It was a very uplifting day! He had fun seeing all his freinds again and being a regular kid. He is settling in and learning the ropes as he is new to the whole routine of things there. He came home on cloud nine and did his homework without even being asked! Hopefully all this will continue..... I can't tell you how happy we were to have this BIG milestone. It seems weird but we have had so many bumps in our road lately that this was something we all needed. It is short lived as he returns inpatient in 2 weeks and will then be out of school for probably 4 weeks while he gets chemo 3 weeks in a row and his body recovers again. Hopefully he does as well and again returns to school. To go for 2 weeks out of each 6 week segment in his protocol is far better than we had hoped. We had thought he would be out until after this last rough schedule.
So here to our school boy.. may all his good days continue and he enjoys some normalcy, he sures needs and wants it!!!
Have a good night.
***********************************
Just a quick update. Owens appointment went great yesterday. His immune system is back! His ANC is 2000, WBC 4.5, Hemoglobin 10, platelettes 40. So he made it through ARA-C with no issues yeah!!!!!!
We celebrated by going to Carousel Mall to shop - aka - I shopped, Owen spent most of the time in the arcade! LOL
More good news - Owen is going back to school today!!!!! Since he made it through the ARA-C and his system is healthy now, he does not have to go back for chemo until December 11th - inpatient for Methotrexate - we are going to try and send him to school for these two weeks and see how he does! He is soooo excited! We'll see how excited when I go wake him up in a few minutes.... he is use to sleeping until 10.
I'll update later on his 'first' day of school!!!!
Have a good day.
Sunday, November 26, 2006 7:09 PM CST
Another good day! Hopefully tomorrow at Owen's doctor's appointment we will hear his immune system is back. He did have a bloody nose this weekend but that can just be from the dry heat as he is more irritated by it than anyone else. Jake still has a pretty good cold, coughing and sniffling, but hasn't gotten any worse. Tyler has been coughing a little today so hopefully he is not catching it.
We did go for Christmas pictures today and then a trip down to see Santa. Jake actually even sat on his lap and talked to him this year. He usually freezes and just stares from behind mine or mom's leg. He told us very proudly that he is not afreaid of him any more!
So Jake wants Dinosaurs (surprise), Tyler wants Cat in the Hat (antoher surprise) and then Owen.... he wants a laptop computer with a wirelss card, 3D video card and a CD/DVD RW ... hmmmm not specific are we. He is only asking for 1 thing he informed me after because he didn't want to seem too greedy to Santa!!! Oh he is a trip!
Back home and Miss Heath came to work with Owen. They had a good day and we should be getting Owen's report card soon for first quarter.
Great job Auburn High Football - winning the Championship!!!!
Have a good night!
Saturday, November 25, 2006 7:56 PM CST
Another good day. I was off early to bring Jake and Tyler for flu shots. I wasn't sure if they would give it to Jake with his bad cold, but since he has had no fever they could give it. Tyler took it like a pro, and Jake yelled Ow, Ow, Ow then he was good. After the nurse left he asked me why she had to put that needle in him!
Back home we spent the day decorating inside. It was way to windy to decorate outside. Tonight the whole family decorated the tree - even Daddy pitched in... Owen was like 'Wow Dad - you even helped this was fun!' Jake and Tyler kept singing 'Oh christmas tree!!' It was really cute and fun for all.
Owen's bandage was coming off his port so we removed the needle and he took a nice long shower. Then I re-accessed him. I goofed the first time. The needles the home care sent were different than the one's used at the hospital so when I tried to put it in him I engaged the safety on it - now I know why the nurses hate these 'safety' ones. So I had to open another needle and this time I ws extra careful of that and success.
Tomorrow we are getting Christmas pictures done and then going to see Santa. Owen will need to wear his mask as we are not sure where his counts are right now. I think they are coming up and so I think he may be in good shape right now, but just to be safe he will use a mask up until the moment of the picture! Hopefully I can hear his 'santa' list. This will probably be his last year and I bet if he were in school he wouldn't even have this year! He caught my slip up tonight but I recovered quickly. I was on the phone with Mom and she had gone shopping and bought Jake the Diego Rescue Center - I said 'Oh I was getting that from Santa' He quicky picked that up and said 'What! you buy our presents from Santa?' GULP....'No Owen - Jake was asking Santa for that and Grandma got it' ... I think he bought it as a big "oh" came out and he went back about his business without any further questions. Must be careful!!!!
Have a good night!
Friday, November 24, 2006 8:26 PM CST
We had a very nice thanksgiving and hope you all did too! Grandma Pat, Uncle Steve, Papa W. Grandma Lee, and Great Grandma Mary came to join us to celebrate. Owen said a very nice prayer and added that he was thankful not to be in the hospital and spending it at home - AMEN TO THAT! As usual you eat to much and by 5:30 we were all ready for bed and had to force ourselves to stay awake to bedtime. We passed it by playing Candy Land and watching some movies.
Today it was off shopping!! Yes Mom and I do the Black Friday shopping. WE do wait until later - we skip the whole crazy people thing at 4am! So a little after 10 we headed to Clay. Hit Toys R'Us, Target, Kohl's, Bed Bath and Beyond, Lunch and home! I am happy to say that I am probably 90 percent done with the kids (need some stocking stuffers and a couple more things for Owen). Owen is still 'thinking' about his Santa things so I am stuck. Guess I better get him to the mall to see Santa so I can here his list! They can ask Santa for 3 things. Everyone else I am about 1/2 done so not a bad start. I want to be done ASAP since my schedule is so unpredictable.
I put the Christmas tree up tonight - no decorations yet - me and the kids will do that tomorrow, and hopefully get any outdoor lights done. I don't think I am going to do much outside - the last couple of years I mostly spend the winter fixing it due to our fierce winds out here!
Jake and Tyler have their flu shots tomorrow morning - I have to schedule Owens when the doc says it is okay with his immune system. Jake is starting on a cold - guess things have been too quiet here so soemone had to get something!
Owen is feeling great. He went hunting this afternoon with Uncle Steve - didn't see anything though bum deal. Chris got a small buck today. I was panicing when he called as he says he is only after the Trophy for the wall since I won't eat venison. But then he said it was too small and his Dad will take the meat. Whew - otherwise let the battle of the dear head begin!!! I don't want one in the house - he can put it in the basement LOL!
Have a great night everyone!!
Wednesday, November 22, 2006 5:50 PM CST
All is well. Owen did not need any transfusion today. His ANC is still low only 126 and under 500 is dangerous to be in public. His WBC is .7 (so going up!) Hemoglobin 10 and platelettes 43 (was 51). So is Hemoglobin basically stayed the same and since his platelettes only dropped a little with WBC up, looks like his system may be starting to recover! Yeah!!! I hope so that would be wonderful that we made it through this round of Ara-C (with the help of Antibiotics) to NOT end up sick and in the hospital. So unless Owen has a fever or we think he may need platelettes by seeing the petechiae dots on him we are clear to wait until our Monday morning doctor appointment to recheck him!!
Miss Heath and Miss Tracey came today and worked with Owen together. They had fun playing some board games and indian tribe games for his work today, so he had a fun school day.
Mom was wonderful today and helped cut up my veggies, dusted, and did some cleaning!! Wow THANKYOU, that is going to help alot!! I did get out of work early (2:00) so that gave me some room. I thought we were going to the SU game tonight, but then my husbands TV was finally fixed after being in the shop a couple months so he was chomping to go get it (they were going to be closed until monday after today), so we weren't sure if he would be back in time. Just as well it made for a much less rushed night with getting things as ready as I can for tomorrow.
We certainly have alot to be thankful for. As much as we don't want to be going through this all again we are Thankful that Owen IS here celebrating with us. Although I never really say it nor does anyone else the fear of WHAT could happen scares us all! We are thankful that Owen is feeling good for this holiday and family gathering. We are thankful that we are still managing to struggle through with all the stress this has put on our family. We are thankful for all of our FAMILY and the support we receive. We are thankful for ALL OF YOU who follow our story and send us so many well wishes and will be there for us at the drop of a hat. We are thankful for our wonderful doctors and nurses who are there for us and doing their best to cure Owen. We are thankful to our employers who understand our needs and back us 100 percent. We are thankful for Owens school who have worked with us and are working so hard with Owen so that he does not fall behind. Many families have a tough time and have to fight for some of the support we recieve (school and work) but we are soooo blessed to have the people we deal with!
We are just very THANKFUL for everything we have!!!! Hope you all have a very nice Thanksgiving and remember to be thankful for all you DO have. Sure there are always things we want but stop looking to the 'would be nice' and start looking at home, at your family, friends and appreciate all that you have. That is what we should all focus on - TODAY not TOMORROW!!! Life can change so fast so step back and live and love for today.
Have a wonderful Holiday and Enjoy!!!
Sending you all our Love and Thanks!!!
The Wawrzaszeks! Angie, Chris, Owen, Tyler and Jake.
Tuesday, November 21, 2006 6:19 PM CST
Ok lets back up to last night again I have a story...
Our neighbors Catora and Mathew stopped by to give us a pumpkin pie. They moved out this weekend to a farm around the corner, and wanted to bring us a gift.. how wonderful is that! Thankyou!
So they pulled out and I saw Champ our boxer standing in the driveway with something in his mouth! Oh Great... out I go.. what do you have??? He drops it and Arghhhh it is a dead woodchuck! I turned and ran into the house. I had to compose myself and realize I HAD to go deal with it or I would find dead animal parts all over the place. So
back out I go... grab a shovel and try to scoop it up. It just kept rolling over and I couldn't get it. So I had to push it with the shovel into the yard where I could get under it. To the end of the driveway and chucked it out into the field. I can't believe I did it!!! I had the hebe jebe's for a long time after. Owen was so proud that his dog caught it! Mom told me she didn't see it in the field today so then I started to panic... was it playing dead and I actually moved a live animal that could have sprung to life and EATEN me at any second... okay just kidding... So tonight I went out to look and sure enough it was there, it kind of blends with the dead grass so it was hard to see. Whew big sigh of relief - it was dead!
So back to today. I didn't bring Owen to school for his pictures or book report. I just thought that was too much exposure and we already had to go to the doctors office. We ended up being at the eye doctors almost 3 hours!!! So I think Owen would have been totally whiped out had it been a full day plus the risk of exposure to something. His appointment was at 2:30 but they said to come at 2:45 as they were a little behind and I wanted to minimize Owen's wait in the waiting room with everyone else. He went through a ton of tests. First with the nurse, then with the doctor, then more with the nurse, final review with the doctor and we were out the door at 5:20!!! Wow long day! He did well on the tests and he has a very slight far-sightedness in his left eye but not enough to warrant glasses. The one test he had some issues with was called AVF (auto vision function). He had 3 different drops put in his eyes and then had to put is head on the edge of a globe type device. Inside was a yellow light he had to concentrate on and then push a button each time a flash of light was seen. It measures depth perception. Each eye is tested for 6-7 minutes! Don't know if I could do that long of a test! Dr. Spec wants to retest in 6 weeks to see if there is a difference in his score as this test is a hard test to adjust to and he wants to make sure his issues were due to this and not anything with his eyes. But overall it appears no damage has been done to his eyes with everything he has been through and we have a good baseline to judge the Exjade effects on now.
So unfortunately we had to cancel Miss Heath - she was coming at 4 and we were still at the doctors. So she will come tomorrow and do a double session.
I have to do a blood draw in the morning to make sure he doesn't need any blood transfusions before the holiday.
We are now settled down to watch Ice Age II.
Have a good night!
Monday, November 20, 2006 4:23 PM CST
Owen started to run a fever last night. It got up to 100.7 The protocol has now changed and we do not have to call the doctor unless it reaches 101 (was 100.4). Owen was having alot of bone pain from the neulasta shot working and I gave him Tylenol w/ codeine. I talked with Zarina about this today. We don't want him in pain, and giving him the Tylenol with a low fever will not mask a bad fever so I am okay giving it to him. If he were going to truly spike then it would have come through the tylenol or he would have spiked after the tylenol started to wear off. His fever did not come back so that is a good thing. But his system has crashed so that is probably why he had a fever.
Busy day for everyone. Tyler had an 11am Hearing evaluation in Syracuse and Owen had an 11:30 doctor checkup too. So I took Tyler and Mom took Owen. Grandpa W. and Grandma Lee picked Jake up from preschool for me. Thankyou!!!
Tyler is staying stable on his hearing. Both ears are still a mild hearing loss with his left being a little worse and that is the one with the hearing aid. He has to go back Tuesday to see the ENT doctor to see if there is anything we can do about the wax buildup or any changes he wants to make in his hearing aids. Tyler did much better this time on the hearing tests in following directions and he made it through all the tests. He usually quits before they are done. He has to drop blocks in a bucket when he hears beeps. And then he has to point to pictures from the words she says. He got 17/25 on his right ear and 15/25 on his left. He was 13/25 on both last time. So some might just be a better understanding of vocabulary too. Then we headed to Port Byron school for his Parent/ Teacher conference. He is plugging away at school and making progress. He has a hard time blending sounds and putting them all together but progress is still being made. He does have issues with acting up and soem is probably due to everything happening in our family. He appears to act up more in the mainstream classes and maybe it is out of frustration. We will keep an eye on it and try and improve this. We are getting no where on the bathroom scene. Tyler is now holding it all day and then going alot on the bus ride home.. hoping this is a sign that he is having control over it!
Owen ended up needing platelettes, so him and Mom would be staying a bit at the hospital for that. Sorry Grandma and Grandpa - lost some communication somewhere!! They thought mom would be home by 12:30, but I had said it would depend on whether he needed any blood supplies, so they ended up with a long day with Jake. All ended up okay though. They arrived home at 3:45, Owen was wiped from the day so luckily Miss Tracey had cancelled because Ron didn't think they would be home in time. I don't think Owen was up to much. His immune system is basically gone.
White Blood Count - .2
Hemoglobin - 16.5
Platelettes - 1 (51 after transfusion)
I will retest him Wednesday morning. Owen was suppose to go to school tomorrow to have his pictures retaken. So I don't think he will do any of it except his eye doctor. I don't want him running about all day and getting run down. It is important for him to get his eye test done and I will have him wear a mask there.
Have a good night!
Sunday, November 19, 2006 1:54 PM CST
All is going well. Owen is getting his IV antibiotic twice aday. I forgot the first time to give him benadryl prior and he ended up all itchy. He also has to take 1 antibiotic pill and 2 antifungal pills twice a day. Then we switched him to a pill form Dapsone to replace his once a month breathing treatment to stop pnuemonia so he get 2 pills once a day for this. He also takes the Exjade drink every morning for his high iron. We went from no meds at home to a whole bunch.. but if this keeps us home .. we are all for it.
Owen went to Samantha's house yesterday to work on a book project for school. They have to put together a box of objects pertaining to a book they have read, create an inventory sheet for it and decorate the box. He is coming along on it, today we will finish putting it together. If he is still feeling good on tuesday I will take him to school and get his school pictures done, then he can present his book project to the class. After that he has his baseline vision testing to have a starting point of wher he is and to watch for chanes in vison due to the Exjade.
Owen worked with Miss Heath yesterday. He had a math test over all they have done so far this year and did great. Miss Heath is coming back today to work somemore. I got his ELA tests back from last year. He got 680 on reading and 695 on Math. Normal range is 650-729. So I am very pleased. He has missed 1/2 of first grade, 1/2 third and now forth. So I think he is keeping up pretty well here at home. It is a good thing he is a quick learner because he certainly does put alot of effort in! He spends more time fighting working on school work, and then is able to finish it quickly!!! He just likes to add stress to mine and Grandma Pats life!
I let him have his friedn Sean come over last night to spend the night. He worked hard yesterday and since he may have some bad days coming up I thought this would cheer him up. He had a good time. Sean was up early but Mr. Sleepy had to get woken up at 10 so he could have some playtime this morning before Sean left!
Have a good day!
Friday, November 17, 2006 9:31 PM CST
Ok - I just finished updating and the internet went down so I lost it - so this will be the shorter version. NEVER get DIRECWAY for your internet provider. It has always been quirky but it is getting soooo bad!
Owen is feeling good, his counts are still really good. Although we expect him to crash over the weekend. So tomorrow I will start him on his IV antibiotic Vancomycin every 12 hours. He will also get an oral antibiotic Cipro and an anti-fungal Voriconazole.
So should be a quiet weekend. He has tutoring both Saturday and Sunday
and tomorrow he is working on his book project with Pam and Sam.
I wanted to share a story Owen and his teacher did:
THE LIFE OF OWEN w.
You may think the life of Owen is fun but it really is not. There are a lot of good things in my life. But, there are a couple bad things too.
One good thing is playing video games. I love playing games like the Family Guy and Call of Duty 2. I love to get presents. I get presents from everyone. My XBOX 360 came from my dad.
Watching TV is fun. My favorite show is Family Guy because Stewie is hilarious. He is so mean. I like playing with my friends. My best friend is Thomas. Thomas is my friend because I've known him my whole life.
I hate when the TV is broken. We have to use the small TV. Another thing I don't like is feeling sick. I hate the feeling of wanting to puke. I love my brothers but they can drive me crazy! I think they do it on purpose.
Going to the hospital is horrible. The only good thing about it is when Brooke and Ben are working. Ben and I watch TV. Brooke and I play cards.
Well, that's my life.
It brought tears to my eyes. I know he has a lot of good things in his life but unfortunately the bad seem to over shadow to forget them. I am so glad he did this, I think it is good for him to talk out how he is feeling. I still think I will look for an outside person different than the child life person to have him talk too. I originally thought it would be good to have the people he knows and trusts, but I see benefits in him talking with a regular child pyscologist.
Now before you all yell at me for the Family Guy stuff... we do let him have a lot of things that in a 'normal' world he probably would never have been allowed. We will probably pay for this later!!! However it was his Canadian Cousins who got him hooked on it and we know what bad influences those Canadians are!! LOL... you know I love you all!
Have a good night!
Thursday, November 16, 2006 5:50 AM CST
Owen had a good day yesterday. He pulled his con artist job on Miss Tracey that he couldn't write his school work due to bone pain!!! She will learn how to read Owen soon enough! He told me he needed to rest and save up because we were going to the SU game - so your hands need to rest?! He just grinned! We did go to the SU game - he has been asking to go and he has just been too low or not feeling well. So I figured this was his best chance at getting a game in. His counts will drop anytime now and then more chemo and then the Big East cames will start and he doesn't get to go to those ones! LOL
He did okay walking up to the dome - little slow and the stairs were alot but he made it! SU won yeah!!! Looking good...
Today I have to do a blood draw late to check his counts. If his counts are still okay then I will start the antibiotic IV and pills on Saturday as by then he will almost definately be ready. He did get switched from the monthly breathing treatment he receives for fighting pneumonia to a daily pill. We needed to wait until his blood work came back to see that he was okay to start this med. This medicine comes with the side effects of destroying red blood cells so we will watch his blood work carefully. We need to watch for 'blue' lips. If any of this occurs then this med will stop and he will go back to the breathing treatment. He just HATES this and begged Zarina for an alternative - he would rather take pills daily! So we will try this route.
Mr. J and his wife had their baby. Miss Tracey told Owen but he couldn't remember the name 'applecin' or 'applesauce' Luckily Mr. J and Mrs. Vasquez emailed me to let me know it was Ella Grace - thankgoodness - I was a little worried about a little girl named applesauce!!! Congratulations Mr and Mrs J!!!!
Owen also received a very nice card from all of his old Multi-Age teachers! We lvoe and miss you all - thankyou for always thinking of Owen!
Have a good day.
Wednesday, November 15, 2006
Owens day ended well monday. At 10pm his fever broke again 99.5 and he was actually feeling well. He did have diahrea one more time and then threw up once during the night but felt okay.
This morning he was not feeling very well. I left work at 10:30 to meet him and mom at Wegmans where I had to pick up his Neulasta shot and head to Syracuse. He slept the whole way there and felt sick to his stomach. They got us right into his room so he could lie down. When they were ready for us we headed to the treatment room to have his
check up and to begin my training!
They let me do it all - set up the table and then get him ready to go. I donned the sterile gloves and prepped the needle with saline. Next I found his port under the skin and held it with my left hand and then have to go straight into the center with the needle with the tubing attached. Take a deep breath.... almost there... oh my hand is shaking!!! I just took a breath and in it went - whew not so bad! I push on the saline and in it goes - draw back and blood - yeah success!!! Wow I can breathe now. I was originally going to practice on the doll with the port first but they were ready to go before it arrived so Owen was my practice doll too! I drew 3 syringes of blood as they wanted to do cultures on him too just to be sure he was still clear of infection especially since he has not been feeling great although it is probably due to the ARA-C. They I put the gauze under the needle wings and taped his port down. We wanted to leave him accessed in case he had dropped in counts already and the home meds would start. Next Missy gave him his neulasta shot in his arm. It burns going in and then burns for a few minutes. Owen was a little light headed after all this mostly nerves.
We headed back to the room to lie down as they needed Owen to give a clean urine sample too. Last night when he had diahrea he said his urine burned when he tried to stop it. He told me then that it was a 'man' thing, it always does that I wouldn't understand... oh my is Owen growing up?! I told Zarina about it and she didn't think this was
a 'man' thing and wanted to culture him just to be sure. So since he had gone to the bathroom when we arrived he didn't have to go so he needed to drink, drink, drink. He told me (again growing up?) that it would take time because he wasn't a girl, he just didn't have to go ALL the time! So we hung out and watched TV. It worked out because the home supply lady was in so we got to go over all the supplies we would be needing to do the port access, blood draws and IV treatments when his counts dropped. His counts are still very good, he did go into the chemo this time with a very good immune system so it will probably take several more days to crash. We did leave him accessed as I will do another blood draw on thursday late afternoon. For now I will access him once a week. Usually they don't like to leave the port
accessed but since we are sure his counts will fail it might be better to not access him several times a week.
Finally it was time to head home, Owen was quite PERKY now. I think most of his issues of being sick to his stomach this morning was nerves of the shot and me accessing him. Although he did throw up again at home and another diahrea he feels good. He did finally eat - first time since a couple of bites of rice Saturday. He ate a little bit of spagetti tonight. I am hoping this will help with his stomach as well as I am sure it IS upset with no food in it for days. He has lost 2 lbs in the last 5 days.
I tried to fill Owen's presciptions for the oral meds he will be needing plus some steroid eye drops because his eyes are irritated due to the ARA-C. After 3 pharmacy's and no luck I just finally left it to pick up the eye drops tomorrow, the other I don't need until his counts drop. I did it again!! I swore the non-common meds I would get filled at the hospital pharmacy before leaving and I forgot my own rule again and got stuck. Wegmans called when I got home just to make sure on the one drug Cipro. Normally it is not given to children as it can
stunt their growth so they wanted to make sure this was the drug needed. Yes it is.. as with so much of his meds.. the benefits outway the side-effects! but how great that they called to verify. I think it is our 'angel' Bernie at wegmans watching out for Owen as always - thanks Bernie!!!
Have a good day - computer was on the fritz again last night - good ol' satelitte internet - it is rains theres no signal!
Monday, November 13, 2006 7:26 AM CST
7pm Update:
Owen didn't have to return to the hospital today but he had a pretty crummy day. He actually came downstairs around 11 and said he felt alittle better after napping more. I took his temp and it was 99.9 YEAH - fever has broke. Okay so the celebration was short lived by 1pm he was 101.4 and rising. He also had a really bad headache starting - yes this is also from the ARA-C, this is why I dread this one so much it causes so much pain and discomfort plus the risk of some bacterial infection afterwards. Owen remained steady all afternoon in the 101's so at least I was comfortable with that. Hopefully by tomorrow all will be done! At one point his head was hurting so bad and he just wanted me with him... then there was Tyler who freaked out anytime I went near Owen. He kept telling Owen 'go away', and pulling me 'come on'. It is so hard, Owen needs me, Tyler misses and needs me, and Jakes takes what he gets.... I just wish there was enough of me to go around. Unfortunately Tyler ended up in his room a couple of times because of he started throwing things because he was upset. As bad as I feel for what he is going through I know I have to start addressing his outbursts much harder. They are becoming more frequent at home and are showing themselves at school to. So somehow I need to gain control while giving them all the time they each need and deserve. Owen is now sleeping again which is good, I had to carry him upstairs as he couldn't even stand up his headache just brought him to his knees.
What did I say earlier.... someday....life will be normal....
***************************************
Well we did make it home last night. Arrived about 11:30. Owen is feeling really awful. He slept until 4pm yesterday with very high fevers. He stayed around 103 most of the day. By the time it was coming down to 101 it would last 1/2 hour and start right back up again. He had a rash break out all over his face and arms but it didn't itch. All of this is caused by the ARA-C. This is normal and that is why they were still okay with sending us home. As much as I wanted to go home I wanted to be where Owen was safe. He said he wanted to go home too and Owen generally knows his body well enough to say when he needs the hospital or not. So I packed up and we were ready to go. At 9pm they came in to give him his Aspariginese shots - one in each leg. They are very painful shots and Owen did great! They monitored him for another hour and then we were ready to go. Owen then got diahrea! I had to run out to the car to get new clothes as he had an accident. So now what. The resident was on the floor and he came to check Owen out. Owen was very tired now and starting to really spike in fever again but still insisted he just needed to lie down and sleep and wanted to go home. The resident said he was okay to go. If he didn't start feeling better by late morning today and was still having the high fevers I needed to call 5C and let the doctor know.
So far Owen has thrown up once this morning and is running a fever around 102. His legs are also hurting from the shots. So all in all he still feels pretty crappy. I am hanging close in case he doesn't start to improve today. If we don't go back today - we go tomorrow to get his Nuelasta shot - this is the shot to help boost his immune system as this chemo will cause his system to crash quickly. Once his system does go below the 500 mark he will start on the antibiotic here at home.
I had to carry Tyler to the bus today. Poor thing. He hasn't seen me in days and then wakes up to me this morning only for me to get him dressed and out the door. I will have to spend some good time withhim once he gets home today. Jake is good - he justs rolls with it. I think this is 'normal' life for him! He always asks 'who will watch me today'? Oh someday things will be routine and all of this behind us.
Hopefully Owen improves and we stay home today.
Sunday, November 12, 2006 7:08 AM CST
Owen continued to have a good day yesterday. He did not get sick with the 3pm dose of chemo. He was up out of the bed sitting in the chair reading or playing on the computer most of the day.
He had a craving for McDonalds for dinner. I did not want to run out for McDonalds of all places!!! Then another family on the floor was ordering chinese, so that sounded good to Owen too. The food arrived and Owen took 2 bites of his rice and one of the sesame chicken and said he was afraid to eat because his stomach was upset right now (he was just finishing up his chemo). Ahhhh I am so glad now that I didn't run around to McD's just for him to not feel like eating! He never did eat it later and thats okay if won't go to waste there's always tomorrow.
Brooke was on again and we got to play SkipBo with her. She had fogotten how so we went over the rules again and she won!!!
We talked to Zarina about how much Owen has to have his blood tested during this phase and his poor little arms are getting abused. She said we had 3 choices: continue the arm blood draws, get finger poked, or train Me on how to access the port and do my own blood draws again! Owen totally did NOT want finger pokes, and NO WAY was his mother sticking him with a needle! Okay well that leaves one option. So with talking with Brooke she told Owen she would initially train me and that she had total faith in me. If I could do the hickman this was just one more little step, just a real easy poke of the needle. So Owen agreed it was the way to go.
So last night Brooke brought in the supplies and although the doll for practicing on was not available she drew a port on a piece of paper on top of the bed. The taught me the cleaning technique which is all really the same as I did for the hickman. Then the needle. The biggest thing is making sure to go straight in not at an angle. Of course going through the paper was alot easier than skin, but I think I am fine. Tuesday when we return to 5C I will practice on the doll and then hopefully they will let me access Owen with them watching!
At 3am Owen spiked a fever, 39.2 (102.6). So cultures were drawn, tylenol given and then his chemo started. Hopefully the fever is just from the ARA-C which can cause fevers. Not sure if this puts a wrench into our plans for leaving later tonight or not. He still feels cool this morning so that is a good sign.
Have a good day and GO SU!!!
Saturday, November 11, 2006 10:03 AM CST
Owen's chemo started at 3am. By 5:30am he was getting sick. They gave him some zofran by IV and he was able to doze back off. He actually just woke up at 11!!! He was asleep by 10 too. I could tell he was getting sleepy as he was hyper. He wanted to stay up and wait until Brooke wasn't as busy and could hang out. But alas he was asleep - so next time.
I'll let you know how he feels during the day. He will have his next dose of chemo at 3pm today for 3 hours.
Friday, November 10, 2006 11:25 AM CST
*** Our phone is not working - think it is the actual line coming into the house so if you are trying to call try Chris Cell 246-8386 or call the hospital. I will be calling the phone company ****
Quick update - Owen has not grown anything in his cultures and his labs are all showing great. So we have decided to roll right into the ARA-C chemo and not go home first. The Chemo will start at 3am this morning. It runs 4 doses every 12 hours with an aspariginese shot 6 hours after the last, watched for an hour and then released. So it will be late but we should be leaving late Sunday night, if all stays on schedule and no issues.
The docs asked if we wanted to go home tomorrow, come in on monday and start or just start. I figured we are here - lets just do it!
Owen's in his glory - his wife is working tonight. He has been in the best mood all day. He has not watched any TV since this morning. He has actually been playing alot of online games but 'good' ones. I SPY, owning a fish store where he had to buy / sell fish and using math concepts and Spidermans web of words - which is finding words out of letters with in a certain time limit. When Brooke gets a chance we are going to have a game of skip-bo and then probably settle in to bed. Bedtime here always seems to be quite late!
**************************************
All is well. Owen got the chills again last night and we thought he must be spiking but he was fine - just cold. So he has not spiked another fever since yesterday. So far nothing in the cultures but kit has not even been the 24 hours yet. If all remains well and he doesn't have anymore fevers we will be sent home tomorrow. We have to come back on Monday for a check up and blood counts and if he is still strong enough we will start chemo, 3 days of ARA-C ( yeah thats the bad one).
Owen worked on science and Social with the tutor MaryEllen today. He 'tried' to con her into believing that he couldn't write due to the IV in his LEFT arm. Guess what - it didn't work - Owen had to write!
I'll let you know if anything changes - but so far he is full of it today and feeling good!
Thursday, November 9, 2006 3:47 PM CST
Owen has been admitted to University with a fever. This morning I took him for blood counts and he was not feeling well. He had the chills and vomitted while waiting to be processes. He again threw up in the parking lot. I headed right back to Mom's house. I took his temp wehn we got there and it was 100.8 (remember 100.4 is call in time). The nurse said to bring him right in with bags packed- he was neutropenic (low immune system) early this week and we were better off not waiting in case he still was. So I called mom - she was just dropping Ty at school - he had a dentist appt this morning and would be back in 15 minutes. Owen didn't want to go home with me to pack as he felt too sick. So I ran home packed up, ran to work packed up and returned to grab Owen. He was not 103.4!!! Yikes! However his counts had come in and he was actually very good - his ANC was over 2000. Under 500 is low. So this is good/bad. It means he has an immune system to fight infection but it almost definately means he has an infection somewhere.
We arrived on 5C and they had to draw blood for cultures and put an IV in him. He cried so hard realizing he had to get poked again and keep the IV in. They wanted an IV due to the possibility that the infection is in his line for his port. They only want to run antibiotics through this line and any fluids or meds will go through the IV line. Poor thing - they got the IV first try but then in pushing the needle in more hit a valve and it no longer worked! Oh yes - so it had to be pulled out and inserted again!!! Poor Owen - I felt so bad, even the next time it went in easy enough but quite the mess with blood coming out from the first hole and not this access. I actually got lightheaded and once they got it secure I had to leave for a second to regroup! Wow that has happened to me in a long time!!!!
At 3 our room upstairs was ready. Had normal check in process with the doctor on the floor and all the resident doctors. Normally we wouldn't have to stay for fever since Owen had counts but since his fever was so high and he had the chills and shakes they wanted him admitted. Cultures should grow quickly if it is in the line (within 24 hours). Depending on how things go and what this does to his immune system he may go right into the ARA-C treatment after. But thats getting too far ahead - need to take one day at a time. Everyone seems to be okay with the lymph node shrinkage so I think things are okay there.
Keep Owen in your thoughts as we take this new bump in the road!
Have a good night!
Owen is feeling much better right now with the antibiotics going and Tylenol in.
Wednesday, November 8, 2006 5:35 AM CST
All is well. Last night was a rush in the door and then right back out to go to the Nucor Birthday dinner. You and your spouse get to go to one dinner a year with other nucor employees to celebrate your birthday. It is a feast beyond feasts!
They start each table out with family style hourderves (peel n eat shrimp, garlic bread, and a blooming oinion). Next you order an appetizer ( I got seafood newburg). Next is salad - only eat a little theres lots more!!! Dinner came- you have a choice of about 15 things. I got filet mignon and lobster tail! And then finally dessert - I got chocalate souffle. Wow were we stuffed!!! I did bring my filet and dessert home and still had to roll out of there! and finally your 'birthday' present - I took a gift certificate to Bass Pro. Nucor is awesome to their employees!
Thanks Papa Fred for watching the boys for me 2 nights in a row!!! ( I had a candle party monday night and caught up with the girls!)
Owen's legs were cramping quite a bit when we got home last night. When he started walking up the stairs he screamed out in pain. I helped him up and he worked through the cramps. Poor thing - I just hope this is not the start of the bone issues from steroids - that can be quite an adventure in itself.
Tomorrow Owen will check counts again. If he is NOT okay to start chemo he will go in to the doctors on friday for a check up and to re-check his lumps. They are still there but just not tender to touch anymore.
Today Owen will have tutoring with Miss Tracey and then tonight Aunt Anna will pick him up to spend the night and day tomorrow. Owen is looking so forward to this!!!
Have a good day!!!
Monday, November 6, 2006 5:08 PM CST
Owen is still too low to start chemo.
WBC .8
Hemoglobin 8.5
Platelettes 97
Neutrophils 20percent
So an ANC of 128
I am still waiting to hear back if they need to see Owen tomorrow for the lumps under his arm - we found another - BUT he says they are not hurting him anymore when he touches them so that is good. I forgot to ask about that when they called with the counts.
Owen had tutoring with Miss Heath again tonight - so making progress in the school area with the delays - getting lots of time in!
Other than that all is quiet and we like it!
Have a nice night!
Sunday, November 5, 2006 4:26 PM CST
We had a little bit of a scare today. Owen has been complaining that his underarm was sore for a couple of days but nothing was there. Last night he asked me to look again because it was really hurting bad. I looked again and now there was a lump - small the size of a pea - but a lump all the same. I called the doctor this morning and he wanted us to come in to check it out. So I packed our bags and stuff - you never know when we will be invited to stay!
Dr. Souid was on and he took a look and said it was an infected lymphnode and Owen needed to go on an anitbiotic. I asked if it could be anything with leukemia. He told me no - his leukemia is gone - we just need to watch for infections. Wow that sounds so good - but I know all too well that those words 'the leukemia is gone' may not be 100 percent correct - but for right now it appears he is in remission! So big sigh of relief.
So we were able to come home and are now on our way out to see our new niece Alexis - she came home yesterday so we wanted to welcome her home.
Owen had his friend Dan spend the night for his 'birthday' last night and enjoyed that. I think they had a rather late night though! At 2am Owen was yelling for me (they were camping in the livingroom). I came down and they thought someone was in the kitchen. They kept hearing noises and the light was on. I turned to go check and 'froze' for a second - what if.... Ok Ange - get a grip no one is in the kitchen! So in I went and sure enough it was empty. So what were the noises??? Hmmm - how about the dog in the kitchen sleeping??? Oh yeah!
So lots of fun and excitement LOL!
Have a good night.
Saturday, November 4, 2006 6:47 AM CST
Happy 3rd Birthday Owen!!!
Yes it has been 3 years since his transplant. Although he relapsed with the ALL we still celebrate the his AML leukemia has not returned! I have happy / sad feelings on this day. I am so happy that the AML has stayed away as this leukemia seems to be the tougher of the 2 to fight and stay in remission from. The fact that is has not returned in 3 years is very good and we must rejoice! The sadness comes in that we are once again in treatment when the hope was to concur all with the transplant. But I must take the good with the bad and know that Owen will concur the other leukemia this time.
So Owen is chomping at the bit to go shopping for his birthday present! We let him get something small for his Re-birthday. And then of course cheesecake to celebrate! Owen is not your traditional kid for cake he doesn't really care for it so cheesecake works for me!
Owen received a nice birthday card from Grandma Pat with $$ so he is already to spend it! Thankyou Grandma. He also got a nice Halloween card from Auntie Kay in SanFrancisco with pictures of her doggies! Thankyou!!!
Owen was having feeling nausea last night and thought he was going to be sick. He never did though so that is a good thing. He is very low on his counts though so to get sick or have a fever would not be unusual but unfortunately a fever would buy us a ticket to the hospital!
Today is a finish getting the house in order after putting in the floor last weekend. Lots of clean up left to do and then finish getting the outdoors ready for winter - yes we still have the solar cover and 2 tables outside! Plus the boat needs to be prepped and stored. So we better take advantage of the nice day today!
Have a good day!!!
Thursday, November 2, 2006 7:48 PM CST
Well Owen has just about reached bottom. His WBC is .6 not sure of his ANC - the differential wasn't back yet when I got the call but it has to be pretty low with that WBC. His hemoglobin is 8.4 and his platelettes went up to 43 (from 25). So no transfusions needed tomorrow but it will be a quiet weekend with low counts. He needs his counts retested on Monday. After blood work we headed to the ENT for his baseline hearing test. He did great! His hearing is excellent - hmmmm - I think he might just have mom&dad-itis as he doesn't seem to 'hear' us too well!!! After reviewing his long history of chemo, radiation and antibiotics she said that was excellent that he was showing no damage - as ALL of these things can cause hearing issues! She would recommend that we continue to have tests - after every treatment! I think that is a bit excessive as he has been in treatment for 3 years with no tests so to repeat this every couple of weeks seems high. She said it would be up to the onocologists to determine how often they wanted to monitor him now that he is on the Exjade.
We headed up to Community after to see my new niece! She is SOOOOOO cute! She has a tone of hair! And I mean a ton - she could have a haricut! She is just so tiny - wow were mine that small once?! I got a lot of snuggle time and then Owen jumped in to have his turn. He got nervous when she cried once and immediately dished her back to me, but once she stopped crying and he resummed holding her for a long time. Aunt Shelly and Alexis should come home on Saturday so if they are up for it we will visit on Sunday again.
Have a good night!
Wednesday, November 1, 2006 7:39 PM CST
I am an Aunt of a baby GIRL!!! Baby Alexis came into the world a little after 5 (via C-section) at 7lbs 9 oz. She has dark hair and is gorgeous. I have not seen here yet but hope to meet her tomorrow if Aunt Shelly is up to us visiting! I am so excited to have a little girl!
Tomorrow Owen and I have to go to Dr. Wannamaker's in Syracuse for his baseline hearing evaluation for the Exjade medication. So we will stop at University to get his blood drawn for his platelette count and then the ENT is just a couple blocks over. So maybe we will stop on the way home to see baby Alexis! I wasn't able to get right into Dr. Specs for his vision baseline. That is not until the 21st.
As much as I love Halloween and the excitement of the trick or treating - it is all fun.... I HATE the day after. I have a house full of tired, grumpy, over sugared boys! It makes for a long day and night. They did nothing but fight and cry at the drop of a hat tonight. Yeah bedtime is here! I hope tomorrow is a better day! I can only imagine what the teachers had today with a whole classfull of kids!
Have a good night!
Tuesday, October 31, 2006 8:23 PM
Busy day - long day - but a good day. All new photos.
First off Owen will not start his chemo tomorrow. His ANC is 638 which is low - under 1000 is low - under 500 is stay at home! His platelettes were only 25 and they have to be 75 to start the chemo. He has to be tested again on Thursday afternoon to see if we need to go in early Friday for a transfusion. Chemo will be on hold until his platelettes and ANC come up.
So first off was Jakes party today. We walked all downtown to the businesses trick or treating. He is so cute with his buddy Logan! They held hands most of the way and just 'chat' up a storm with oneanother. He had his party after the walk with lots of yummy treats and then a TON of candy and goodies to go home with. Jake asked me as we left if I had fun at his party - so I said 'yes thankyou for letting me come' "I'm glad mommy - your welcome" how sweet is that.
Next to Tylers. We did the BIG parade around the track at Port Byron - it was suppose to be 3 times - but Tyler only made it about 1 1/4 and then he was on my back, then shoulders. Whew!!! We watched the 3rd lap from a bench! Back to the room - Tyler was already 'anticipating' me leaving and not behaving well and not wanting to do anything. Finally we started to decorate a cookie and he relaxed. As soon as his cookie was finished - he immediately ate it - mmmm good stuff! We then read a 'Cat in the Hat' book and THEN I had to say good bye to him. He was not happy but I know he was fine after I left.
I didn't make it to Owen's in time for the parade - I figured I wouldn't with Ty's parade at 1 in PB and Owens at 2 in Union Springs - chances would be slim so I didn't even push to get there. He was settled into Miss Heath's class playing bingo when I arrived and he told me that I was NOT making him leave yet. No honey not yet - you enjoy the day! He seemed so happy to be there. I would love to send him but am just too nervous - he has his good days - but those bad ones seem to just sneak up and knock him down so hard! I saw many of his buddy's from Multi-age and they were all coming in to the room to see him it was so nice to see. As the class was getting ready to leave for the day - Owen and I went and found Mrs Burcroff the principal to meet her and then we met Mrs. Duger the school nurse. Figured Owen better meet her - he was very good friends with the nurse at Cayuga!! Everyone was so wonderful at AJ - it is really other than Owen's orientation day the first day we have been in the school and met anyone. They gave me a booklet they made for Owen that was all about AJ and the people he would meet. Everyone signed it for Owen with wonderful notes. This is just truly wonderful to see!
Back to home - and Owen got tutoring with Miss Heath for an hour. He worked hard - but then told Miss Heath she was 'pushing it' for how much work she could get out of him for today!! Guess he is comfortable with his teacher now - trying to take control. Miss Heath can take him though!
We ate a quick dinner and then were only going to have to hit Grandma Bonnies and Papa Fred/ Grandma Lea and the rest was trick or treating time. Just before we left Grandma Bonnie called and Shelly is on her way to Community. She had a doc appt today and they wanted her to go home pack and get back. No rush she wasn't really in labor but if she doesn't go on her own now they will induce by tomorrow! So we will have a new neice(?) tomorrow sometime it looks like! Yeah a girl!!!!
Off to Papa's - we just went in quickly - the boys all got really nice books and $$, Owen's was all about sharks - great for science - it shows the insides of the shark! Course wanted to take the Shark - out of the book - trust me it took all of us to work on convincing him that you can't!!Thankyou!! Then we headed out walking and would return to visit more after trick or treating. We went down to Grandma T's where the boys all got BIG bags of Oreo mini's - their favorite type of cookie. Thankyou!!! We had to borrow a flash light as we left ours sitting back at Papa and Grandma's house! All three boys were really into the whole trick of treating. Tyler would walk away all proud and show me everytime! We walked as far as Mr. J's house and then turned around to head back up. Which was perfect because Tyler was 'done' and when he is done he is done. He just walked with me and Jake and Owen would go up to the doors on the way back.
Once back at Papa and Grandma's house they really got a kick out of handing out the candy. Everytime the doorbell rang they all went running. This was our most enjoyable Halloween I think. I am so glad we broke it up to do the grandparents earlier than halloween. We were at Papa's by 6 and then back a little before 7 - hung out another hour handing out candy. So it seemed like a nice relaxed night instead of the usual rat race.
Owen had some other special presents waiting for him at Papa and Grandma's house. There was a Poresky Karate shirt waiting for him from his Karate teacher! Thankyou!!! Owen hasn't taken Karate since he relapsed - he is too nervous about getting hit in the port, and right now I wouldn't let him - again just due to the tough schedule he is on.
He also had a Auburn Double Day ball signed by the team that our cousin Carla got for him. Her family housed some of the ball team this year so they got to have a very special relationship with them. Thankyou!!!
So now the day has ended and we are all very tired! Time for bed and relax! Hope you all had a great Halloween and no goblins got you!!!
Monday, October 30, 2006 7:21 PM CST
All is well. Owen continues to have good days. He did have a belly ache last night when he went to bed - but could the culprit be too much candy??? We had gone to Grandma Pat's trick-or-treating yesterday so he got his good bag full of halloween goodies. he got new batman slippers and a spiderman bionicle, money plus candy! Wow is it Christmas. Jake got a penguin ( because he was SUPPOSE to be a penguin - he has the costume - but now wants to be his Aladar dinosaur from last year!) A dinosaur book and candy. Tyler got a spongebob movie, a puzzle, money and candy. Great start to their halloween treats. Thankyou Grandma!!!!
Tonight we went to Papa W's for LOTS of candy. Mr. Metzler from next door stopped by too when he saw us with good bags for the kids too! Tyler was on a mission, being very distructive so the stay was short. Thankyou!!!
We decided to try and get some stops done early because last year we ran our of time running to all the Grandparents and then trying to get regular trick or treating in. Owen ended up in tears because we only got a couple of houses in - and missed Mr. J's house which is one of his favorite teachers! So we will make sure this is on our travels!!! That is if Mrs. J holds out on their baby!! Wow so many babies coming!
Owen worked with Miss Tracey today and she gave him a break with no homework with Halloween - wow there's a treat!
So off to bed - it is a BUSY day tomorrow. I have it off. I am going to Jakes party in the morning - trick or treating down town. Then Tylers party at 12:30. And then over to AJ for Owens party. I hope Owen's counts are good to go - he is looking forward to this sooooo much - it will really be a downer for him not to go.
Owen started his EXJADE prescription today for his iron overload. This is a high security prescription! I had to fill out a form - which Zarina then sent in to a special pharmacy. Then then called to go over the drug with me and set up a delivery time. They bring it to us and I had to sign for it!!! Gotta love the phamplets with it. Iron overload can cause serious health issues: heart failure, liver disease and diabetes. Taking this medicine can cause: nausea, vomiting, diarrhea, dizziness, headache, fever and abdominal pain, trouble sleeping, hearing loss, restlessness/ high energy, vision changes, rash. BUT the benefit is greater than the risk of side effects! Wow don't know if I should be scared or reassured! Course he gets chemo and the list of side effects there are a mile long too. I have to get Owen in for a preliminary vision and hearing test though so we have a border line. I wanted to test his eye site anyways because he said sometimes he has trouble reading - he reads the same line twice. It mostly occurs in smaller print so we'll check him out.
Have a good night!!
Sunday, October 29, 2006 8:09 PM CST
Hello everyone - sorry for the delay in updates - but we were putting in the floor this weekend so the computer has been down. So the disgusting rug is GONE and the beautiful floor is in!!!! It was a long day on Saturday - we were up a little after 6, emptying out the room and pulling up the old rug and getting staples out. Our 'crew' Dad and Ken came later morning and the project was under way! They worked all day only taking a 1/2 break for pizza!!! But by 7:30 the floor was in! THANKYOU THANKYOU Dad and Ken for helping out - we soooo appreciate it!
Tyler went to the Freedom Camp Halloween Party with one of his counselors Anna. He had a fun day with her and came home with lots of candy and treasures for Owen and Jake. Thankyou Anna and Josh - he really enjoyed going with you!!!
Today we worked on putting the room back together. I went and bought some of the furniture slider pads to go under everything - with the wood floor we didn't want to scratch it up. Now let me tell you - everything slid back in ALOT easier - these things are worth it!!! We were breaking quite the sweat lugging it all out of there the day before!!
I did take Owen, Tyler and Jake to the YMCA for the Halloween party. The kids had fun - although Ty and Jake would have stayed in the jumping house all day. Good thing it was a timed limit - I did have to go in and 'fetch' Tyler as he was NOT going to get out!! No tears though - he laughed and then we were off to the next activity.
Miss Heath came today and Owen worked really hard with her. She said she has been happy with Owen's progress, expecially since we have been on such a rocky schedule so far. So I am glad. He has just been in a great mood since being re-fueled on Friday!
So all is well here - we had a good weekend and fingers crossed this will help with some of the health issues! Tyler's nose is sorta running right now on and off - but I did have a refill for his antibiotic and did go ahead and fill it - to cut this off quick -if it is his sinus flairing up again and not just a cold!
Have a good night!!!
Friday, October 27, 2006 7:54 PM CDT
Owens day started out slow. He was grumpy because he had to get up 'early' at 8:30 to go for blood. Mom and him picked me up at 9 after dropping off Jake to school. His day picked up then as another one of his girlfriends Katrina - was the clerk who checked us in at registration! Quick blood draw and we were out of there at 9:35 - back to work. At 9:50 the call came in - get to the hospital as soon as we could he needed both platelettes and blood!
So off we went. Owen was stressing because we didn't have the numbing cream to put on his port site. I should really keep it in the car - then it is always around to put on! We got to the hospital and they put the cream on while they set up - but really didn't have time to give it the 45 minutes to really work. So off it came but they did put a quick squirt of freezing spray on it to also help. He said it helped but still not as good as having the numbing cream on the right way. So they gave him his premeds- benedryl and tylenol and then Cyleminadryl (sp?) by IV for his reaction to platelettes. Up went the platelettes. Again we (or I) was bumming we didn't think of bring homework!
Once his platelettes finished the type and cross was done and his blood was ready to start. We were making great time - it was now 1:00 and his blood was starting! Due to his weight they realized he could actually run a little bit faster than the 3 hours we have been doing - so it was set for 2 1/2 and we would see how he handled it. He was fine. He dozed off - I think the benedryl finally kicked in. He slept about an hour and then was awake and feeling great.
I ran up to 7H to visit the Moore's - yes they are back on 7H and off the 4th floor critical list!!!! They still have a ways to go - Bummer feels another week. But sonogram shows the blood is moving correctly in the liver now. We got talking and Tracey is due the 6th, my sister-in-law Shelly is possibly being induced on the 1st and they are both delivering at Community! So great - we can have a party at that hospital too!!! They could be there same time!!
How weird is that??
Owen's blood finished at 3:30 and we were on our way. We stopped and picked up Thomas to spend the night. It has been quite awhile since they have seen each other. It was really cute listening to them 'catch up' in their lives and Thomas filling in Owen on school. So it is a fun night here - Tyler and Jake LOVE it when Thomas is here too.
Tomorrow is a BIG project day! We (well Chris, my dad and a friend Kenny) are ripping out our 18 year old carpet in our livingroom and putting down hardwood flooring!!! Yeah - maybe this carpet is half of the bacteria that floats around this house! God knows what is 'living' in it, especially with 3 boys spilling everything known to man on it!!! So I am very excited to see this happen!
Busy taking some of the smaller stuff out to get it ready and then off to bed - it will be an early day tomorrow. Not sure if the boys and I will hang here or get out - depends on how much they want to help!
Have a good night!!!!
Thursday, October 26, 2006 6:34 PM CDT
Owen had another good day. Not quite as great - he would have meltdown's during the day - meaning he would burst into tears over little things, where yesterday nothing bothered him he was on top of the world!
He worked with Miss Heath today on math and science. She said he worked pretty well and has left him homework for Sunday when she returns. We completed some work tonight while the Tyler and Jake were in the tub. This was actually some left from before - problems he was stuck on and needed me to be able to work through them with him.
Other than that it has been a good day and looks like a good night too - we will take of that we can get. A quick check on his blood tomorrow morning and unless he needs a transfusion he is free for the weekend. It will be nice to see how his counts for his immune system are hovering too!
Another update on the Moore family - Tracey did not have the baby yet - they ended up sending her home - false alarm. So that is actually good for them - I can't imagine worrying about ethan and having the new one arrive. Hopefully she can hang out a little bit longer until Ethan is stronger. I know many of you know the Moores so I will let you know if I hear anything.
Have a great night!!!
Wednesday, October 25, 2006 5:19 PM CDT
Owen is back!!!! He is feeling SUPER GOOD today!!! I think he might have gotten TOO much blood (LOL). He woke up in a great mood. Mom brought him to me while her and Jake got their hair cut - so he shared in our department meeting today. He actually 'started' the meeting - conducting it to tell us that the Adults pay for the lunch - and he (the child) just gets to eat it! We 'tried' to get on with business but Owen kept interrupting with his ideas on what we should do. Mom and Jake showed up and Jake even was social instead of his shy self.
Owen worked with Miss Tracy today. They built an awesome longhouse - the home of the Iroqouis - with pretzels. It was great and Owen even made a fire for them. He 'sang' most of his reading. So like I said he was very high strung today.
I did get his counts and his platelettes have dropped to 43, and his WBC down to 4.3 so he is on the way down so we will see what his system does from here for as far as what next week will bring. He will go on friday to re-test to make sure he doesn't need a platelette transfusion. His mouth sores are pretty much cleared up. He has some right on his inner bottom lip. When he did his mouth swishes today it would bleed but otherwise did not even hurt him today.
We received a very nice card from Canada with all of Owen's family signing in. Thankyou!!! I knew Owen didn't read all the writings (alot were cursive and we KNOW how much Owen loves cursive!) So as I am reading - I see a VERY important one - I said Owen did you read from Rayne??? 'No - I didn't see that' Hmmm - look - "We have to have our wedding soon Love Rayne XXOO" Oh did we blush a little???? Owen has been in love with Rayne for years and asked her to marry him many years ago. yes - Owen has girlfriends EVERYWHERE!! Some day he will get caught....
I don't have an further updates on Ethan Moore BUT his mom Tracey went into labor with their second child at 3am.
So looks like it will be a great night here! Hope yours is the same.
Tuesday, October 24, 2006 4:56 PM CDT
Owen woke up feeling okay - not great but not bad. His lips looked worse so we immediately put some more vaseline on them and off to clinic. He has to get pre-medicated for the Etophous chemo because he had the reaction to the Etoposide (lungs closing), and this is really just a different version of that. So 2 meds by IV to get him ready and then the chemo. Next he has to have another pre-med before the Cyclophosphamide chemo - this is to coat his kidneys I believe. By 1 he was ready for blood. His lips are as white as can be so the blood will definately bring some color back!
At 1:30 he started to have a nose bleed. I always thought this was a sign that he needed platelettes but it is not. Could just be the dry air that causes it and the private room we were in was warm and dry. You know if I say that it is!!! I am always cold. The bloody nose lasted about 5 minutes. Colleen came in to do some projects with Owen and when he sat up his nose started to run again. This time is was coming pretty quick. This time it lasted an hour! It would run fast and then slow down, we were putting ice on his nose and pressure. So Zarina ordered a blood test and a slide to check his platelettes just in case - because a nose bleed that won't stop and clot can be a sign of platelettes. So thats the difference - how long it runs for. Then Owen yelled to me 'look' and in his mouth was a big clot of blood!!! I yelled for Zarina who had him spit it in a paper towel and then she dumped it in a bin to look at. As freaky as that was it was a clot - which means his blood IS clotting so no big deal. OK easy to say - but thank god we were there! If that had happened at home I would have been a basket case!!! His platelettes came back ok - he is at 60 so he has enough. I have to check his blood again on friday to make sure he doesn't need a platelette transfusion. We are suppose to start the ARA-C next week but it will depend on his counts. He has to have a platelette count of 75 to start so as of today he could not - unless his system starts to rebound up again. Day at a time.....
Finally his nose stopped. But near the end of the blood transfusion 3:30 it started again!!! Zarina gave me a nasal spray presciption to put in his nose to keep it moist and less irritated. So I took it right down to pharmacy to fill. By the time I got back 15 minutes or so he had stopped again. I gave him a spray in each nostril even though it was only one that was having the issue. He had fallen asleep while I was gone. So we got him up and ready and on our way home a little after 4. So long day at clinic.
He felt weak walking up the ramp to the car so I left him at the entrance while I ran to get the car at the end of the row. A nice nurse sat with him while I went - don't know who you are but THANKYOU! Owen laid down until we were just entering Auburn and then he sat up feeling much better.
I got his shirt and pants soaking as they are covered in blood - and then we even did a little math - so he is feeling better. We have been having to keep cancelling his tutoring the last couple of days due to him feeling so bad, but hopefully he will start to feel better now. I am keeping my fingers crossed for tomorrow!
I did check in on the Moores while I was there. Ethan has been in ICU for a few days but today was moved to 4 North, which is one step better than ICU. Still close monitoring but not as critical. He has a tube in his lungs to drain fluid that has built up around his lung and they are watching his other lung as that is starting to have some fluid around it. They think the chemo pill he was taking caused liver damage - as it can. So please keep Ethan in your prayers - he is not out of the woods yet. He is making baby steps towards getting better but baby steps are still good!
Have a good night and remember to keep all of the children fighting against this awful disease in your prayers!
Monday, October 23, 2006 5:48 AM CDT
Monday Evening:
Owen had a pretty crummy day. Mom and Owen picked me up at 9 to go to the hospital for blood. Owen was nervous because they would have to take it from his left arm due to the red welt on his right and thats where they usually do it. He was not feeling good at all. He had to run to the bathroom several times while we were waiting to throw up. We finally made it in and he was a champ. I decided I would run home and get our suitcase and stuff along with numbing cream for his port I figured we were headed in whether he needed blood or not. I did not like the way he looked or acted and I wasn't waiting for a fever - I wanted to make sure he was okay. His sores on his lips were even worse this morning.
By the time I returned to work the fax was in and his hemoglobin was 8.5 and platelettes 83 so he didn't really need a transfusion - they do these at 8 and 20. I called to find out about bringing him anyways and they said to bring him in - with Owen we go on the side on caution now! I went to mom's to pick him up and he was sound asleep. He slept the whole way to the hospital. They checked us right into a room and all his vitals were okay. Big sigh of relief - I can tell fever - but lately it has been his blood pressure that is an issue when he doesn't feel good. They decided to give him a couple hours of fluids to help with dehydration from not eating or drinking and from throwing up. He slept the whole 2 hours! Finally after the 2 hours we woke him up for the doctor to take a look and he actually talked a bit. Then he kind of perked up for the nurses and was talking about his 'blood slide' we made at home. So they made him one from his own blood and put the stain on it so it will be permanent and he can keep looking at it here at home with his microscope! Zarina said next time he has a bone marrow aspiration she will make him a slide of this too - how neat! I on the other hand and no longer volunteering my blood - Zarina had to give me the scolding for poking myself with a safety pin - big risk of staph infection!!! Ahhh what I will do for Owen!
We are going back in the morning (9am) and will probably get blood, and then get his regular chemo that is due tomorrow (Etophous and Cyclophosphamide) He will get these at a reduced dosage (60 percent and this is due to him usually crashing out and then getting delayed for his next treatment. Since his next is the BIG SCARY ARA-c CHEMO which he always seems to have issues with - we want him to go into it with decent counts. Right now he is looking good in that area WBC = 7.5 with and ANC of 6900.
I signed the consent forms today to start him on Exjade - which will help reduce his iron overload. It now has to go off to the pharmacy - get approved and then will be sent to our house. He will be watched closely with this drug on when he gets it and when he doesn't. Generally anyone who has had over 20 units of blood in a lifetime will have iron overload so that is why Owen is in this category. This can be dangerous so this needs to be reduced.
Owen layed down the whole way home and is still not feeling great but is feeling better. He even came out and helped a little with pumpkin carving. He felt too weak for scooping or carving so basically sat and watched - but hey he was there!!! He is now back in bed laying down. He did eat some - 2 glasses of milk and some mini blueberry muffins. Everything else he tried hurt. Poor thing he is hungry but the sores in his mouth are preventing him from being able to tolerate much.
Hopefully he will have a decent night and then another long day tomorrow. I guess the blood could pump him up a little but then again he is getting chemo and that could knowck him back some too - so not sure what tomorrow will bring....
Have a good night and pray for Owen to perk back up - it was so nice seeing OWEN for a few days!!!!
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Owen had a pretty off day yesterday. He just wasn't feeling well. His stomach was off and he has mouth sores starting. They are mostly on his lips right now, but we are making him do lots of mouth swishes to prevent them from moving back into his mouth and throat. I can see some on the inside of his cheeks. He usually does get these after the methotrexate but hopefully we can minimize how bad they get. He is doing his mouth swishes pretty well though even though they burn on his lips but he too knows how much worse it can get!!!
I did call the doctor about needing some transfusion's. She seemed to feel it would be okay to wait until this morning to just go to Auburn to test and if he did need them to come over to clinic today.
Grandma Bonnie came to visit in the afternoon. It was a quiet loggie day. I went later to get some groceries and stopped to get some pumpkins. It was way to cold to take the boys out so I cheated and just stopped to get some. I walked back in to all three boys sleeping so we will wait until tomorrow to do the carving.
Owen kind of perked up around 7 and we did some reading. Miss Heath had cancelled coming as she was getting a cold and with Owen not feeling well we figured it wouldn't be a productive day. So day we will try again with Miss Tracey and Miss Heath will be dropping some things off.
Owen did throw up at 11 last night. He knows too much... 'Why am I getting sick? I am not on any medicine, and the chemo has been over for days!' I don't know why honey... but maybe the mouth sores are irritating him enough to cause him to throw up?
I wanted to ask everyone to say a prayer for Ethan Moore. He is going through a rough patch right now. He is having issues with his liver. I don't know all the details. They were inpatient with us last time and suppose to go home before us, but then something started to happen with his liver. From what I know it is enlarged and is functioning the opposite of how it should ( so I guess keeping toxins in?) So keep them in your thoughts and prayers!!!
I'll let you know how we make out today....
Sunday, October 22, 2006 7:09 AM CDT
Yep - we're trying to figure out a plan to steal baby Natasha! She is adorable! All smiles and the boys loved her. Owen and Jake took turns feeding her dinner. Then they all kept trying to get Natasha to come to them and Jake wanted to keep picking her up 'she's cute!' We had to keep close eye as everything goes in the mouth and our house is not as 'baby-proof' with toys as it once was! She is the best 'peek-a-boo' player I have ever seen. Her smile just melts your heart. Think we could give Lori the new doll that poops and she wouldn't know??? Hmmmm guess not, but I would take her in a heart beat!
It was so good to see Lori it has been 1 1/2 years since we have seen each other! It was hard to 'catch up' thought with 4 kids and keeping an eye on them. We definately need to make a trip to florida to find some alone time while the kids are sleeping! Thanks for coming to see us!!!!!!
Owen took a nap during the day and then was back sound asleep as soon as Lori and Natasha left at 8:30! He also has a bruise mark of some sort on his arm that just appeared. He also woke up with a bloody nose during the night. I will see how he is when he wakes up but I think we may be calling to go get blood/ platelettes today - he may not beable to wait until tuesday.
If we don't have to do that we were hoping to go pumpkin picking today and carve our pumpkins and then Owen has tutoring with Miss Heath today.
Have a good day!
Saturday, October 21, 2006 9:04 AM CDT
All is well - sorry for no update yesterday - weather affects our DirecTV Satelitte signal for the computer and I had no internet.
Yesterday Owen woke up feeling nausea and yucky in the morning - seems this is the way his day starts but by 11 or so he feels fine. I went with Mom, Tyler (he had no school) and Jake to the Firehouse for Jakes preschool field trip. They loved the fireman coming down the pole!! When the fireman said that you had to be part of a 'team' when in the department Tyler yelled out 'Team Work' - how cute!!! Jake wouldn't sit in the firetruck or ring the bell but Ty jumped right up - loves these types of things.
Owen ended up taking a nap in the afternoon - his hemoglobin is low so he will be more tired. He woke up and 'just didn't feel right' but again once he was awake a bit he felt fine.
We are VERY EXCITED about today. My very good friend Lori form florida is here with her 9 month old little girl Natasha. She will be coming over today and we can't wait to meet her!!! We were suppose to go down in July to visit but the week we originally planned was the same week as Owen's camp, and then he got sick andd ended up in the hospital so we never did either! Since then with all of Owens issues and getting sick we decided we needed to postpone our visit to florida until after this last round of intense chemo - so this will end beginning of march and then we hope to go. So we are soooo thrilled Lori was able to come here to see us! I can't wait to get my hands on a little girl!!!! Owen thinks it will make me want another - and try for the girl....
Have a good day!
Thursday, October 19, 2006 10:12 AM CDT
3:15pm Update:
We are leaving! Owen is under .2 and we are going home.
His hemoglobin is 8.4 so he doesn't need a transfusion (yet), possibly when he goes to clinic on tuesday for chemo.
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Mr. Social Bug was allowed out of the room last night and to play in the day room. He had to wear the gown that covers his skin and gloves on his hands. He said 'I know I look like a dork - but hey now I can play with everyone!' So he had a game of Yahtzee with one of the student nurses and then played with a little 3 year old Madison and her grandma. They had races up the hall and around the floor. Owen was just having a blast. This IS my Owen having fun and not upset and depressed.
We are soooo close on the level to be released. Owen was at .23 this morning at 7am and is due to have another level at 1:00. He has to be < .2 to go home. So drink Owen drink!!! I am cautious as we have gone up many times after getting a low reading. However Dr. Cherrick is on and she says she is our good-luck charm as last time he didn't go back up after a low reading. So we'll see....
I need to find out if they are going to do a CBC before though. Owen's Hemoglobin was 9.7 on monday and they have not checked it since being in. So before we get home I want to make sure he doesn't need a transfusion.
I'll update later - hopefully from HOME!
Wednesday, October 18, 2006 8:36 AM CDT
Owen had a good day. He finally agreed to eat a PBJ sandwich and milk and felt so much better after. He worked on math with the tutor. I went to the day room to read while he was having class and totally forgot to call my Tyler at school!!! I am going to call each day I am in the hospital at 1 to see if this helps Tyler deal with me being gone. I can't believe I forgot. I am so sorry Peg!!! I WILL call tomorrow! I did call Tyler as soon as he got home from school to talk to him about his day. It was grandparent day at school so Mom went for lunch and she couldn't believe Tyler ate his mixed vegetables!!! Tyler eats so much as school that he won't even look at when he is home. But again - could we give him too many choices at home?? He knows thats all there is at school and eats it - at home - well he covers his face and says no - and is given an alternative - hmmm think he is pulling one over on us for sure!
Papa W and Grandma Lee picked Jake up from preschool for mom. Jake went grocery shopping and spent the day with them. THANKYOU!!! For stepping in and helping out.
Mom and Nicole did go watch Jake at swim today and are very impressed with how far he has come. Although somehow he manages to do a sit dive without getting his face or hair wet! Still progress is progress.
Owen is having a blast tonight. The student nurses are here so once we finished Social Studies he was free to play. he had 5 of them in the room playing - or should I say victims for him on gamecube. He is now 'hall walking' and chatting up a storm. Back to being his social self - I LOVE IT!!!!
I did go to Outback tonight to get dinner. I told him one night we could order out while we were in so he picked tonight and of course it was ribs. Again he said they tasted 'funny' so I think his taste buds are off. We'll see because sometimes he does better with leftovers the next day.
So things are looking good for a good night! Hope you have one too & thanks as always for checking.
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It was a pretty quiet night. Owen got a really bad headache around 5 - yeah just as social studies was to start! But the nurse brought him tylenol. Then about 40 minutes later he was near tears - his head was killing him, why wasn't the tylenol helping!!! I went over to comfort him and saw the med-cup with the tylenol pills sitting on his bed. I showed it to him and he was like 'oh! see how bad my head hurts I forgot I haven't even taken the pills!' So he got them down and in another 40 minutes he was feeling so so with the headache. So we just settled in and watch a Disney Halloween Special and then Owen was asleep.
His stomach is upset this morning - so the chemo is kicking in. He hasn't wanted to eat yet but hopefully will soon. He always shuts down on his eating with the methotrexate, but if he made himself eat it would help with the nausea, if the chemo had something to absorb into.
Owen donated 2 of his xbox 360 games to 7H yesterday. They recently got an xbox 360 and have a few games. So Owen brought up a couple he doesn't really play but are basically brand new. Thankyou Owen it is nice to see you being generous and giving back!
I'll update later... have a good day.
Tuesday, October 17, 2006 2:10 PM CDT
We are all settled in room 7602, phone 464-3680.
We got here around 10, and settled in quickly. I
ran out to the car to bring our stuff in. When I got
back Zarina and the residents were here for his
checkup. Zarina will go over a bunch with me and I
will fill you all in:
1. Owen will receive full dose methotrexate this
time (previoulsy his dosage was reduced due to his
counts taking so long to reboung after). This is
followed next tuesday he will receive outpatient
chemo with a reduced dosage (75percent)
Cyclophosphamide and etoposide.
2. The Novewmber 1st when he returns inpatient for
another round of the ARA-C - yes the scary chemo that
always seems to knock Owen for a loop and we end up
inpatient with some sicknes - THEY ARE INTRODUCING A
NEW PROTOCOL TO FOLLOW. I am very excited. After
the ARA-C once Owens immune system crashed (ANC
<=500) he will automatically start an antibiotic IV
Vancomycin and oral cipro at home!!! This will
hopefully prevent the serious problems he has had in
the past following ARA-C. The Vanco will run every
12 hours.
3. Ferritin - iron level. Owen has an iron overload
of 2900. This is due to the amount of blood
transfusions he has had. So he will start after
finishing chemo on a medicine Exjade to reduce this
level. They want his system at a 'normal' ratio -
mostly due to the fact there is always a chance of
having to go to transplant again and his system needs
to be in the best shape for that.
4. MRSA - I have a sheet from infectious disease on
MRSA. Basically it is to 'control' the staph
infection - but will not elimnate it. And basically
it means CLEAN CLEAN CLEAN for our whole family as we
are all in the same household and most likely all
carriers.
- keeping nails short & clean
- shower/bathe daily
- lots of swimming in chlorinated pools!(summer)
- piercings and tattoos are out! Guess I don't
have to worry about Owen getting his tongue pierced
or an ILove You Mom tattoo!
- Washing towels from shower each time used and no
sharing.
- Total scrub down of the bathroom - EVERYTHING
- frequent replacement of toothbrushes
- frequent sheets and pillowcase washing
Bascially extra extra cleanliness. This wil help
reduce the frequency of re-infection.
Grandma T is looking into this 'Tidy Team' which
basically is a cleaning team that comes in from top
to bottom and scrubs your house clean. I am going to
have this done just so we have a good base to start
with and then maintain it. God knows we have had
enough germs in our house that this will help in a
million and one ways. I think a total fumagation of
the house will definately help!!!
So I guess thats it. Owen's chemo has started. It
will run 24 hours with extra fluids also being pumped
in to help prevent mouth sores. He will get
leucovorin (sp?) the rescue drug - after completion.
He will actually get a couple of doses to help his
system recover. Once the chemo in his system reaches
a level of .2 he will be able to go home. This has
taken him a total of 4 days each time we have done
this so far.
He is feeling good and has already had math tutoring
today and I will work on social studies later today
with him. He is playing an I-SPY computer game now
from Mary Ellen. The challenge is on. Someone in
one of the other rooms has found ALL of the things on
the many rooms except 2 things. Owen is the champ of
I-SPY so he doesn't want anyone beating him!
Have a good rainy day!!
Monday, October 16, 2006 6:24 PM CDT
All is well. Tyler did go to the docs yesterday and is on an antibiotic to help clear up his runny nose and finish off the remaining pinkeye he had. By last night you could already see an improvement with 2 doses! They gave me 10 days with an optional refill if he appeared to be still fighting his symptoms.
Both boys (Jake and Ty) are wiped out today after returning to a busy school day. Should be an early night for them.
Owen had a good day - went for counts this morning and chemo is a go for tomorrow. I have to call in the morning to make sure they have a room ready for us since Owen has to go right into isolation. Depending on any admits during the night they may need to do some bed shuffling in the morning to accomplish this.
Yesterday Great-Grandma Mary and Aunt Helen from Corning came to visit with Papa W and Grandma Lee. Owen, me and Papa played some Black Jack - the house (me) won! Papa thinks I 'stink' as a dealer which means I have a good chance of getting hired at a casino!
Then Owen, me and Aunt Helen played a game of skipbo. Owen took honors on this one with Aunt Helen coming close behind! It was a fun day of games.
Owen received a few special gifts. One from Lisa, Tilly, Brock, Keeley, and Micaena in Oregon - our cousins - Grandma Lee's daughter. They sent Owen a whole drawing set on how to draw Super Heros! Right up Owens alley there! Thankyou so much!
Owen got right to work and has created his first drawing from scratch of batman,which I have posted - pretty good starting right out! He is packing this to keep him busy at the hospital this week.
Today he got some from his cousins in Vancouver - Glo, Bobby, Rayne and Dejah - some Halloween treats (yes Owen you have to share) and some tapes for the Spinoza Bear. We will be trying these out soon! Thankyou! And Jake had to immediately 'just taste' the candy.
So all is quiet and Owen is heading into this chemo with pretty solid counts so hopefully he should do okay even after.
WBC 3.3 (4.5-15.5)
Hemoglobin 9.7 - may need a transfusion while we are in (at 8.0)
Platelets 255
Neutrophil 75
This gives him and ANC of 2400 so pretty good to start.
I'll check in once we are settled on 7H tomorrow!
Have a good night!
Sunday, October 15, 2006 8:14 AM CDT
We were on the road at 10:30 off to rochester. First stop was Bugaboo Creek Steakhouse - Owen's favorite restaurant. He ate a whole loaf of fresh bread and 1/2 a blooming oinion before his ribs came. He only ate a little of his huge portionof ribs this time. He claims they weren't as good as last time - not as saucy - I think his belly was full!
Off to the Rochester Auditorium for Beuty and the Beast. No worry about him being a big crowd - I am fighting a head cold and mom now has Jake and Ty's pinkeye - so I guess he was safer with everyone else more than us!!! The play was great. Owen had some good chuckles over it, but definately thought the lion king was better. He said Beuty and the Beast was a little bit too 'sapppy'! Well it IS a love story! He can't wait for the next one though - but unfortunately most of the others are too grown up for him. He says he would like 'Annie' as he has watched some of the videos at Aunt Annas with Megan. Thats in March so we'll see.
Back home and he wants someone to spend the night. I told him no with Ty and Jake getting over pinkeye and me getting stuffy I would rather not. Well he wanted to stay somewhere then... how about Papa's? He called Papa Fred and Grandma Lea and they were willing to take him. Good problem solved! Thankyou Papa and Grandma!
I am taking Ty to the doctor today - he woke up with his pink-eye worse - yesterday it looked great. So he may need a little more than the drops.
I think Miss Heath will be coming today to work with Owen and other than that is should be a cleaning day and day of rest!
Have a good day!
Friday, October 13, 2006 8:44 PM CDT
Owen's bone marrow result are in and they are clear!!!!! Always so good to get that report, expecially with the delays he has had - we want no window for the leukemia to start again.
Jake and Tyler stayed home again today. Jake is starting to look pretty good - but for one day we figured he may as well stay home. Tyler's eye's weren't as red, but they were very runny and his nose was going. This may turn into more for poor Tyler and he may end up going to the doctors this weekend if he continues.
Owen continues to remain healthy - yeah!!!! Miss Tracy came tonight and Owen worked on Reading and Social Studies. She brought some work for him next week in the hospital AND a big bunch of index cards with notes from school!!! They used some yarn and strung the index cards along this and then hung it in his room. It is absolutely beautiful and very thoughtful!!!!! Thankyou everyone - it means the world to Owen to know you are all thinking of him and that he is not 'forgotten'. Thankyou for being the wonderful kids you all are from the bottom of our hearts.
Owen also had a goody bag from the teachers. It came packed with halloween treats, halloween paddle palls, superman pads, nerf football, pens, cards and just lots of things!!! Thankyou again for all your thoughtfulness. And Owen listened to Miss Tracy. It came with 4 paddle ball games. He went to Samantha's house tonight for a bit and brought her one, and gave each of his brothers one (Miss Tracy asked him to share...).
Oh hey Chrissy - Do not tempt Owen he would be all too happy to wrestle his brothers to the ground to get some pink eye goo to analyze!!!! Ha Ha
So all around good day again today. I need these good days - they certainly help boost back up my power to go through all that we do. The hard times are getting harder and harder to deal with. But a quote from Batman "Why do we fall down" "To get back up" And I do get back up and we WILL get through this battle!
Have a good night!
Thursday, October 12, 2006 7:45 PM CDT
Well I bet you can't guess what happened today?? Tyler woke up with pink eye!!!! Jake's has moved to both eyes now. And thankfully Owen has escaped it so far.
Tomorrow I was suppose to go on Tylers field trip to Beaver Lake Nature Park... but so far looks like it will be another day home for Tyler. I was hoping to have a special day with Tyler as he seems to be hit the hardest by me disappearing into the hospital all the time. Maybe this weekend he and I can have some one on one time.
Owen and I had a scientific night last night. We got out his microscope and were viewing all the slides that came with it and then created some new ones with the sample containers included. Then we got thinking what else could we make slides of??? Hmmm too bad we don't have a dead frog - we could disect him and look at specimans from him! Hmmm how about some blood samples? Daddy??? He said no way... okay so who is next - oh yeah Mommy??? Ok - so I had to poke myself and squeeze out some blood. It was really cool to look at. Have to compare that to what Owens looks like next time at the hospital. It ws geat to see Owen working hard at making slides and using his mind creatively!!!
Tomorrow Miss Tracey will come and she is bringing a 'goody' bad of work for Owen for next week in the hospital. Owen is looking forward to her coming. He enjoys the turoring and the breakup of his long days here at home.
Thanks for thinking of us as always!!!
Wednesday, October 11, 2006 6:55 PM CDT
Owen is doing better than he has ever done after a spinal tap / bone marrow. No spinal headaches - could it be all the Mt. Dew he has been drinking? Doc says caffeine is great for keeping them away. The red blotches under the eyes are gone. He still has stiff legs and hobbles to walk but otherwise he is feeling good.
Today he went with Pam for a special day and a Yahtzee rematch. Owen won so he got to pick something for Pam to do. He selected to make her watch his wonderful deer video he has been making everyone watch! Hope you liked it Pam ha ha. Thankyou for a great day for Owen!
Our cousins Lisa, Nina, Katrina and Jordan all came over tonight for a visit. The boys were thrilled to have Jordan and it was a Batman - criminal and I don't know what else frenzy! They had fun and were definately very much into the rough housing play. Us girls got to chat and laugh over some great stories - ESPECIALLY Nina's!!! Sorry can't let you know.... Thanks for the visit.
Jake woke up with Pink eye! Mom wasn't sure if it was and took him to school only for the teachers to verify it was and they did a big U-turn. I still have drops here at home so I didn't take him to the docs. Jake is NOT thrilled with the whole eye drop thing. He fights and cries and it definately is a work out to give him the drops. Now just to keep our hands to ourselves and off of Owen and Tyler! He was very sad to miss school today.
Have a good night!
Tuesday, October 10, 2006 4:20 PM CDT
Today went well. We were ushered right into an isolation room to await until it was time for the procedure. Yes even on the surgery floor Owen will need to be isolated. Owen did great as always with the procedure and we should know the results from the bone marrow aspiration by the end of the week. The good thing is Owen gets to keep his crawling hand that Zarina gave him last week (it is in isolation now too! LOL) It is a really cool hand that looks real and moves when it is touched. Owen had lots of fun last week scaring everyone in the hospital. Thankyou Zarina!!!
I had a million and one questions for Zarina. She brought me a document all about MRSA, as info I find on the internet may be old or incorrect. This way I had up to date info to read. She is going to talk to Infectious Disease doctors to find out more on many of the topics.
In a nut shell, Owen will be isolated on both 7H (inpatient) and 5C (clinic) whenever we go. He can carry this for a few weeks upto 40 months or more!! Chances are the whole family is now carriers of this MRSA. I will need to let Dr. Bright know about this due to Tylers respiratory issues as this could complicate these or result in pneumonia. She is checking into whether we should all be tested to see. But chances are it is in our house. The best defense to prevent it from re-infecting Owen's blood or from being 'stronger' is to be very diligent with handwashing and wiping of noses etc. I have bought tons of purell and it is everywhere in our house now. I also need to wipe areas that are touched frequently - like every 3 days (door knobs, light switches, fridge etc) with clorox.
I was concerned that IF I am a carrier what about when I am on 7H or clinic. While I am not really in contact with the other kids or playing with their toys I am all around the floor. Touching the computer, fridge, tables etc. So this needs to be looked at as well.
I need to make sure any cuts Owen recieves are covered in bandages so they are not exposed for his skin (or ours) to re-infect. I asked about how Nick and Owen were playing their gameboys linked up and she will ask into this as well, but probably as long as the cable that they both use is cleaned with alcohol swabs after this will probably be okay. One concern is Jake. If he IS a carrier now what would that mean IF Owen had to have another transplant? It is not in Jakes blood, and his marrow would be screened prior but do they check for MRSA? More things to find out about from Infectious Disease. Owen will be swabbed periodically to see if it has cleared his skin. But until then looks like things will be fun- yeah right.
I did check on Owen going to the dentist again and he can. He has to take an antibiotic an hour before going and he has to have a good counts. This saturday is Beauty and the Beast and I KNOW I said I wasn't going to take him BUT he has better WBC now than he has had in quite awhile - probably due to the nuelasta shot. So I have decided to take him (with Zarina's blessing).
Owen's legs have been bothering him yesterday and today. He walks stiff. This happens every once in awhile and then goes away. This can be from the steroids and we have to keep an eye on this. Zarina will go over that with Dr. Dubowy. Owen is also starting to develop 2 red blotches under each of his eyes. This just started the last few hours. If it gets any worse I am going to call. He says it doesn't itch and doesn't bother him.
So thats it for now - I will let you know when I find out anymore info on the MRSA or his bone marrow results. If all stays well Owen will have blood work on monday and Tuesday he will go in for Methotrexate. This is usually a 3-5 day stay, depending on how fast it clears his system. So far this chemo has always been a 4 day stay - so hopefully it stays this way (or less!).
Owen WAs suppose to also go into the hospital on Halloween to start his ARA-C round again but we got the OK to stay home and trick or treat and come on wednesday - YEAH!!!!!
Have a good night!
Monday, October 9, 2006 6:25 PM CDT
Ahhh - home how wonderful it is! I walked into a clean house so even better I could come home and relax and enjoy my boys! Thankyou honey for taking care of home! Owen had fun playing with his friends Sean; and Dan for a few hours and he was just bouncing off the walls with being able to be with his friends. Thanks for a great time!
Today was a great day. Owen went for the day with Pam and Sam Walawender. He had a blast playing at their house and then they went to Morgans to pick Pumpkins and enjoy some fall activities. I could see how much this meant when they arrived home to deliver the pumpkins and gourds! He still wasn't done for the day - he wanted to go back to eat dinner there. Things like this are so great for him, he needs to be a kid! Thankyou so much Pam!!!!
It felt good to be back to work and some normalcy for me as well!
Tyler, Jake and I went for a walk in the field when I got home. They wanted to see some deer. I said okay - not thinking we would see any as we walked in this wide open field across the road. But when we got to the other end of the field - there in the next field over the creek were 2 deer running around!!! So it was a successful walk. We sang songs and had races. It was good just to have fun!
Tomorrow will be along day with Owen getting his spinal tap, bone marrow aspiration, and he will probably be very sore Tuesday and maybe even Wednesday. Pam wants to take Owen for the day again Wednesday as she isn't working and have a fun day playing games. Even if he is sore he will probably be up for this. We will see... a day at a time...
Have a good night!
Sunday, October 8, 2006 10:14 AM CDT
Yeah we are going home!!!!
The last of Owen's anitbiotic was started at 10:45, it runs 2 hours and then we will be headed home! It will feel so good to go home and on such a beautiful day!
I do have lots of questions regarding his positive MRSA skin culture and Dr. Souid answered them but guess I am still a little confused and will talk more with Zarina on Tuesday. Owen's line will also be cultured again on tuesday.
IF Owen has an open sore - could he infect himself again? "NO- not likely"
Is it dangerous to Jake or Tyler? "NO"
Can we also become carriers by being exposed to Owen? "NO"
Will this eventually go away? "NO-Owen will always be isolated when we are admitted. It is more for preventing the spread in the hospital, due to the immune suppressed here, but outside the hospital there is no worry" ?? not too clear on this one
How will isolation for the kids in clinic work?
Give me time I will have more, but my mind has just been going, I was searching online but it talks more of when you are infected within your blood not when you are colonised. (a carrier) So now there is one more thing to throw in the mix. Although isolation is nice for me ( I get to sleep in a bed) it is not for Owen as far as beign able to socialize with the other kids which makes his stay nicer. However Nick and Owen did find ways around it!!!
Saturday, October 7, 2006 9:01 AM CDT
Hi owen again today im gonna play some games and have some fun.well bye.
Well as you can see Owen is back to normal and full of it. He has decided he will take over the updates. I had removed the Superman Music he had me put on yesterday - it gave ME a headache listening to it and I am sure all of you as well!!! But alas I was caught and had to put it back on - so turn down your volume!
We are on schedule to go home tomorrow - probably by afternoon. His skin cultures did show he does have it on his skin. While this is NOT dangerous to him - it is to other immune suppressed kids. So Owen will remain in isolation on our next inpatient visit as well. He has to have 3 negative cultures before he can be out of isolation. They will culture him again next time we come in (the week of the 17th).
He was out of bed yesterday and standing in the hall talking with Nick next door, he had gameboy in hand and they were discussing how to do things. It was too funny. He is allowed out of the room to walk laps or stretch he just can't touch anything other kids may use, or sit in the day room or play room etc. So hanging outside Nicks room still allowed the two to play with no contact!!! Today Nick is sitting in a chair outside Owens room and they are linked together on the gameboy to play against eachother. Where there is a will there is a way!
Owen has been showing everyone a movie clip I recieved via email (Sue!) of a deer strapped to a car that then talks to people walking by. It is really funny. He even made the doctor watch the whole video!!!
Go SU!
Friday, October 6, 2006 11:48 AM CDT
Hi this is owen I figuired out moms password! They got an xbox360 up here now! Hopfully getting out of here sunday. It stinks being under house arest. I have a very nice student nurse. Well seeyah
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Another good day - gotta love those. We have had a busy day already. Owen was up at 7, yes 7am!!! He was all hot and sweaty and wanted to take a shower. No one could believe Owen was strolling out of his room that early! They did let him out last night to walk some laps in the hall. He said it felt great to be up and walking!
After his shower he took a nap - of course! Doctor was in and all is still looking good and he is still on schedule to go home Sunday.
Mary Ellen came to tutor Owen at 11 and he asked if he could wait 15 minutes. She said sure she would be back. As soon as she left he said "Mom - quick give me my 4th grade book - I have to do my homework!!!! " Leave to Owen - she left him a page of math facts to do and he 'forgot'. He was done by the time she returned and was ready to work.
The SU football players were back for a visit and Owen was much more social this time. They discussed how watching TV is much more educational than the work he was doing then for school - NICE!!! I will post the 2 pictures as soon as I get them, Gina is going to email them to me so I can post them.
Thursday, October 5, 2006 12:34 AM CDT
** Night Update **
Owen continued to have a great day. He did have to have his port de-accessed and a new needle inserted. They are only good for a week. This caused some anxiety but he came through like a trooper!
I went to a parent group tonight. I ended up being the only parent, along with a parent from the PROP support group (parent reach out program ), plus the specialist on 5C. I was hesitant to go as I have an awesome support team with all of you, family, friends, other caringbridge families, and my own caringbridge site ( which is like my diary and very much a life saver for me to pour out my feelings). However after my meltdown on friday I thought 'why not'. I am so glad I went. We talked about my feelings, owens feelings, what I do to help myself, what I need, what I will need to do to help as we continue to our road for myself, owen and the whole family. We discussed finding things for Owen to do the next 22 weeks to help him cope with being out of school and being isolated. Where he could go during non-busy times that might help him, activities to do etc. Any ideas from all of you are welcome too! I am so glad I went and it would be nice for this group to take off, as this was the first night. I think the biggest issue is to get parents there - just like I had reservations about going - but once you get there the words just flow out.
Colleen hasn't come to work with Owen yet but I am hopeful that will happen soon, as I think this will be great for him too.
Have a great night!
** Morning Update **
All is well here. Owen had a great night and was back to himself joking with the nurses and playing pranks. He was up early (for him) 8:00. He was all sweaty and wanted to take a shower. He fell asleep shortly after that. Papa W and Grandma Lee came to visit and brought us a wegmans sub for lunch Thankyou!!!
He woke up while they were here and was very chatty. It is so nice to see Owen happy and himself again.
Mary Ellen (his tutor) came in and he was ready to work. He 'forgot' to do his homework she left him though... hmmm see it is not just for his AJ (and Cayuga) teachers that he forgets these things for! I even ASKED him about his work and he told me what they did with no mention of homework. LOL somethings never change. So they are working on math now and later he promises to do some more work with me on the Geo-Safari computer she has left for him.
Doc was in and everything looks great. We are on schedule to be released on Sunday. Tuesday he has to come back for a Spinal Tap and Bone Marrow aspiration. We have to be here at 8:45 with the procedure scheduled for 10.
Another boy who we met up here Andrew Sleeth, and Owen enjoyed hanging out with him and his family - went for a bone marrow transplant for his AML leukemia 6 months ago and they have just found out that he has relapsed! Cancer SUCKS so bad. His family is in such turmoil now. They are reviewing what options they have right now as a relapse 6 months out is usually too soon to think about another transplant because of the high toxic chemo's that have to be used prior. His sister was the donor and Andrew has had minimal complictions all seemed so well. He is in our thoughts and prayers as they wait for the next step. Please keep them in your thoughts as well they need all the support they can get. Andrews Site
Wednesday, October 4, 2006 8:10 AM CDT
**Night Update**
Good day - no fevers, only a little pain ( he had nubain once), and even got some tutoring in. He is eating some ribs from Outback now with lots of warm bread. Owen skips the sides so he can have extra loaves of bread - he loves it!! After that it is off to a much needed shower.
I changed plans at home. I ended up staying all day and headed back up at 5:30. Jake and I had fun 'hunting' bears in the house, playing his new penguin board game from Uncle Pete and Aunt Shelley - it is really cute - thanks!!! Then we colored Dinosaur pictures - there's a surprise.
Tyler was sound asleep on the bus when he arrived and was very surprised to see me. He got right up and gave me a huge hug! I am so glad I stayed and got to see Tyler too - he was sooo happy to see me. We ate an early dinner and then made some halloween decorations. Then it was off to Papa Freds and Grandma Lea's until Daddy comes. At least Tyler wasn't sad to see me go (or Jake but he deals with it better), Papa's house is just like home so that's a good place to go!
I am feeling refreshed and in a good mood, I think I REALLY needed today too.
Have a good night!
**Morning Update***
Owen had a pretty good night. He spiked a fever around 8:00. It was 38.1 (100.6). Do they had to do blood cultures of his line again. This doesn't necessarily mean anything that he went for days without a fever and now has one ( or so I am told). But it went away with Tylenol and has not come back to that is a good sign. His pain is getting better. He has not had any pain medicine through the night, where he was waking in pain the night before. He is not awake yet and he is making groaning sounds but hoping his pain is much better or gone today.
I am going to go home for a couple hours today. Mom will be up after dropping Jake at pre-school. I will then go back - pick Jake up from school, pay my taxes and get a few things from home and then head back up. Mom needs to be back before Tyler gets off the bus. We thought it would be too hard for Tyler for me to get him off the bus and then head back to the hospital. Seeing me for just a little bit would be worse than not seeing me. Jake rolls with that much better. Tyler will definately need some one on one time when I get home.
Tuesday, October 3, 2006 7:34 AM CDT
NIKKI IS HOME!!! She has been missing since yesterday but finally came home today filthy, tired and hungry! We had put an ad in the paper too.
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Owen continues to be in alot of bone pain all day and is either asleep from the pain medicine or crying in pain. The hope is that this should be at te tail end of it (fingers crossed). Doctor said if Owen has no further complications and continues to improve he will be sent home on Saturday or Sunday. So we have a few days to go. That is ok though, he is definately not feeling good and I think for now I am more comfortable with him here.
**** Morning Update *****
Had an awesome night with Pam. She brought dinner and the movie 'Failure to Launch'. It felt so good to sit back and laugh and laugh. We had to switch TV's with Owen because only one of the TV's had a DVD. So we confused the nurses - but Owen would explain that we needed his TV for our 'chick flick'. Thankyou for a great night!!!!
Owen had trouble sleeping last night. He was having alot of joint pain. The thought is it is from his Neulasta shot that he received a week ago to help his counts rebound. So he pretty much received the pain medicine every two hours last night or else he was screaming in pain. He just received more and is sleeping peacefully now. His blood results are back and he did indeed jump, which can cause the pain as well.
Here is how his counts improved:
WBC .9 to 2.9
Hemoclobin 8.0 to 10.2 (but he had received blood)
Platelettes 52 to 54
ANC 414 to 1653!!!
So he definately has some cell growth overnight which is great. The skin wash results have not come back yet. But things look like they are miving in the right direction.
** I wanted to throw this out here because may people live out by us. Our electric fence is broke and our Golden retriever left yesterday and has not returned. She is very blonde in color and her name is Nikki - PLEASE IF ANYONE SEES HER CALL US!!!! THANKYOU! **
Monday, October 2, 2006 8:25 AM CDT
** Afternoon Update ***
Things are back to stable. Owen has had the Nubain pain releiver a couple of time to help him through his discomfort. He says he can't explain how he feels but he just doesn't feel right and the nubain lets him be comfortable. They are still leaning towards the steroids being the source for his aches or possibly even the neulasta shot he recieved. His counts are starting to surface!!!! Yeah he is at 410 ANC so almost past the Neutropenic zone (<500).
His urine tests came back okay. Not sure why the initial tests had the problems but the 'clean' sample was negative. They also did a 'skin wash' of Owen. Basically they did a culture check with of his nose, under arms and butt area. They are checking for the MRSA bacteria on his skin. His blood cultures for this bacteria are already negative and this generally will not happen for a while, that is why we would have been in isolation for the next several admittance to 7H. So now they are wondering if he just came in contact with the bacteria - at home, hospital, clinic, anywhere - and it made him sick but really was not growing inside him.
So we'll see what these tests show. Only problem is IF it is determined that he just came in contact with a the bacteria - WHERE???? Will we go home only for him to become sick again? For now I wait and see what the results are.
Tonight my cousin Pam is coming up for a 'girls night out'. She is bringing dinner and a movie and we are going to relax in our penthouse. It is a chick flick so Owen will have to fend for himself. At least we have 2 TV's so he isn't 'forced' to watch our girl show. He is in better spirits and is even playing a video game - first one in 5 days!
I did talk with Coleen the child-life specialist and she is going to work with Owen tomorrow on emotions and just some exercises that get children to talk and work through the many emotions they are going through. She is going to bring me up some sample things for me to look at and even continue to use when we get home. Owen really likes Colleen - they have fun - and she has been there to help him through many procedures he is nervous about. So they have a good relationship and I think she will be an excellent person to start with Owen. We have become very concerned with how depressed he can get. He sinks into himself and won't talk to anyone. He is angry at what he is going through and how sick he has been getting. So this is the first step and if he needs more then we will see that he gets that, but I think the trust he already has with colleen is a big plus.
So I am looking forward to girls night and will update tomorrow!
PLEASE say a prayer for the Wall's family who I have been in alot of contact with. Their son (16) has the same leukemia Owen has (the mixture of ALL and AML). He underwent a bone marrow transplant August 16,2005. They recently found a mass close to his aorta and have had it biopsied. The fear is leukemia. I have the link to his site below.
***Morning Update ****
I feel like we are back walking on egg shells. Owen was not urinating alot yesterday. AT first figured it was due to me not being around and he wouldn't eat of drink. But as the night went on he was still barely going. I forced him to go around 9, he was sobbing saying he didn't want to go due to his back hurting. His urine was quite dark and they sent it out for testing. It did show it had either blood or liver enzymes in it. So at midnight when he went again we had to do a culture and get a clean catch. So far I have not really heard anything bad, that there are some elevated values but Dr. Sadowicz has to review this more before he can say.
Owen was crying this morning. He said he didn't know what was wrong he just didn't feel right. They have been giving him a steroid to help maintain his blood pressure and this can make you hallucinate. He did ask me yesterday if his bed was moving and I didn't think anything of it. But he is very emotional and this is from the wonderful steroids. They are going to discontinue these and see if he can maintain his BP on his own now. He did wince in pain though when the resident was pushing on his back and stomach. Really not sure what is going on, but it all makes me a little nervous. I was going to go home for a little bit today to get some clothes, pay taxes (ughhh) and just breathe for a few minutes. But when Owen woke up sobbing and not being able to tell me what is wrong I called mom to cancel. She is going to still bring me up some more clothes and some detergent, as they do have a washing machine here that I can use.
Sunday, October 1, 2006 7:47 AM CDT
** Afternoon Update ***
Oh I am breathing again... today was a pretty good day. Owen was grumpy this morning when he realized I was going to the buddy walk and daddy was staying. I explained how I needed to spend time with Ty and Jake too and it was either go to the walk or I would be going home for a bit. So I left as Daddy, Papa W and Grandma Lee arrived. We kind of took a little detour to get to the buddy walk, I thought I could take 81 but nope... so needless to say we missed the kick off. It didn't matter though. As soon as we pulled in Tyler saw the big balloon entry way and started clapping and yelling 'walk' 'walk'! We headed out and turned around shortly after the bridge when we hit the majority of the people coming back. It didn't matter to Tyler that we did the 'short' version he was very proud. Tyler and Jake played a bit on the playground and then we headed out. We weren't into staying the whole day but were very glad we made the walk!
Back at the hospital Grandma Bonnie was just a VERY grumpy Owen. He wouldn't talk to anyone, even his beloved 'wife' Brooke. It took awhile after I returned, but I finally broke the sour mood. Papa Fred and Grandma Lea came up. Owen was quiet at first and his back was aching. So I had to massage his back. He finally decided he would take a hot shower for his back. Dad and Leanne ran out to get him Ribs for dinner that he was craving. After his shower he was feeling much better and gobbled down his ribs and fresh bread! Thankyou Papa and Grandma. He even became the 'joker' Owen for a little bit with the nurses. It was nice to see. He became a little itchy with the antibiotic so he got benedryl and now he is sound asleep!
So he is making progress... I will take that. Have a good night!
**Morning Update***
Owen had a quiet night!! He has had no fever since last evening. His oxygen stats and blood pressure all remained steady. They didn't even put him on the monitors last night. He sweat alot last night - I had to change his sheets and blankets twice last night.
The doctor was in and he said that is a good sign that he was sweating with no fever. It generally means the infection has broken. So fingers crossed that is what it means! The screening of the MRSA strand is back and he has the 'common' strand of it. What this means there is many antibiotics that will treat it - including the one that he is receiving. So big sign of relief, I soooo needed that!!!
So far we ARE planning on going to the Buddy Walk. The weather looks okay outside and teh sun is even trying to peak out. My mom and I will take the boys and Chris will stay with Owen. We may not stay long - but at least we will make it. Tyler LOVES the buddy walk and seems to understand that the day is for him.
I wil update later.
Saturday, September 30, 2006 7:48 AM CDT
**afternoon update****
We are moving rooms again - Room 7602, Phone# 464-3680
Owen's bacteria has been identified. MRSA - Methicillin-resistant Staphylococcus aureus. While this is not dangerous to you or me this can be VERY dangerous to an immune compromised system. Owen has been isolated now as they do not want to affect any other children and the nurses will need to wear gowns and masks when entering the room so they don't spread it to other patients.
I officially lost it today. I think I cry everytime I pause to think. Chris and i went down for lunch and I just kept crying. The doctors and nurses are re-assuring. I asked them if it was time for me to officially freak out yet - I am terrified. They say that the antibiotics ARE working and as long as they can see they are working that is positive. They are keeping a close eye on Owen.
They took another blood draw to do another culture and see if the bacteria is still showing. His platelettes are down to 8 so he has to have a transfusion tonight. Owen will have to have several 'clean' blood cultures before he is considered clear. What that means is the next couple of months that he is impatient he will continue to be isolated. While the anitbiotic will treat the bacteria it can linger as far as being contagious to the other kids.
Owens throat continues to be a constant source of pain. He IS hungry finally and WANTS to eat but we have to find something he can eat. So far he has tried peanut butter and jelly and it hurt to much going down. The throat pain is most likely due to sores from the chemo inside his throat. He has been getting Nubain pain medicine for this. Brooke is going to check into a constant drip of pain medicine so that he might not spike up in pain so much. It will still be the same about of pain med, just given constant to maintain him, VS giving every 2 hours when he ends up in alot of pain. This may even help with allowing him to eat. So she will check with the doctor. If this ends up making him too loopy we can back off but it is worth a shot.
Tomorrow is the buddy walk and I think we will be missing it for the first time since Tyler was born. It is suppost to be pretty much a wash out tomorrow and the last thing I need is to expose the kids to cold rainy weather. I will plan on runny home to see Ty and Jake for a bit tomorrow and to hopefully give me a chance to re-group with my own emotions.
Have a good night - we are hanging in there.
**Morning Update****
It was another bad night. Owen's BP started dropping again and so did his oxygen stats. The resident also ordered a chest xray because he has a little cough but it has a 'wet' sound to it. Before they started to flush him with fluids again they needed to know that his lungs were not over-saturated from the night before and to check for pnuemonia. The xray looked ok. they brought the IV team up to put a periphryl IV in. IF there is an infection in his port they don't want to keep pushing fluids and using it - this will just keep circulating the bacteria. So until the results to determine this are back the port is no longer used. I just can't believe this. The whole reason to go with the port is due to decreased risk of infection! We have had it what 6 weeks?!
Owen was put on Oxygen around 11 last night and they started taking stats every 1/2 hour. He was basically one step away from the ICU again! His throat was really hurting but they didn't want to give him any pain medicine as they needed him to breath normal and didn't want any meds that could lower his BP. Owen was very uncomfortable and he was awake alot of the night in pain. His fevers were very high again and weren't breaking which also contributed to the dropping in BP. Around 4 he was staying pretty stable and we did turn off the oxygen as that was drying his throat more and hurting him worse. He seemed to be able to maintain a good stat without it.
He was just given Nubain for his throat (8:30 am). Docs should be around in an hour or so so I will update more then.
Friday, September 29, 2006 9:36 AM CDT
**** We switched rooms this morning - we are in room 7608 and #464-3684****
6:30PM Update
Not much to report here. Owen has been very quiet all day. He has been on a pain medicine Nubain every two hours to control the pain in his throat. This pain could be be from mouth sores down deep in his throat that can't be seen or a strep infection. If it is strep the antibiotics for the bacterial infection will treat this as well. So Owen has been basically out of it all day and watching TV. I did try getting him to talk to me earlier and he finally barked out at me in a raspy voice - "My throat is killing me don't you get it!!" So I haven't made him talk the rest of the day - I take his nods or pointing of the fingers.
They are doing a quantitative test on the culture to make sure the infection is NOT in his line - here we go again! But the thought is it is NOT since running the meds / fluids through it has not caused him chills which if there were bacteria in the lines pushing meds through it would cause the bacteria to be pushed back in his body all the time.
As you can see we had 3 of the SU players come to 7H. There were many here today but a few went to each of the Pediatric areas. These are #45-Jake Flaherty LineBacker, #71 Adam Rosner Off. Tackle, and Vinnie Girazzi Line Backer.
***************************************
Morning Update:
Our night got worse before it got better. Owen woke up around 6:30 but was not feeling well at all. He threw up again and it was all bile as he had nothing to eat all day. He was still drinking alot of water which was good. They thought his chemistries looked like he was dehydrated. I told them how he was up Wednesday night alot going to the bathroom and drinking - which really didn't make sense for him looking dehydrated. He had drank a little thursday but now since being on 7H he was drinking quite a bit. After throwing up his throat really started to bother him again. His fever was still present but had finally come down to 38.2 (100.8).
Owen thought he would try and take a shower as that sometimes makes him feel better. Once we got to the bathroom our nurse Ginny came in to put a waterproof bandage over his port bandage so it wouldn't get wet. Owen started shaking and moaning and not feeling well. She took his blood pressure and it had dropped. She had another nurse come in and double check and it was very low. So we headed back to the room - Owen was looking very weak and she had them grab a wheel chair to get him back. The resident was called and they started pushing fluids to get his blood pressure back up. It felt like dejah-vous let me tell you!!! His pressure came back quite quickly though and they were able to get him stable again. They thought they would put an IV in as well in case his BP dropped again - because the port is very hard to push fluids through - times like this we wish we had the hickman!!! But the doctor wanted to hold off and see how Owen did the for awhile. They continued to take his vitals every 15 minutes though until 11pm, and he remained stable. They did put him on a monitor to watch his oxygen rate and heart rate but these remained ok. His heart rate was up some.
This morning he was in alot of pain - his throat really hurts. They did do a throat culture yesterday as well. His blood culture did grow a bacteria infection. They don't have a name for it yet - but so far appears to be a staff infection. I asked about Tyler and Jake with their colds - if they could have infected Owen. She said a cold is viral and even with Tylers nose being a green discharge this is most likely not the source. This type of infection is a bacterial infection generally is possible after ARA-C and not much to do to prevent it. Owen did get some pain medicine this morning for his throat and that seemed to help. He continues to have fever, although it does go away, but comes back within 4 hours.
So for now he just stays on the antibiotic and we hope to keep his BP up. We did just hear the SU football players are coming today! They will be on the floor anytime now.
Thursday, September 28, 2006 9:54 AM CDT
Owen has a fever - 103 - we are on our way to the hospital and will probably be admitted.
4:00pm Update
We have been admitted. We are in room 7602 and phone is 464-3680, I will post this below too.
They did blood cultures - both from his port and a periphyrl. He did throw up when we were on clinic and actually perked up a bit (for about 15 minutes) and felt better. He has had 2 antibiotics run so far and has had tylenol. Unfortunately the Tylenol has done nothing for his fever. He is still 39.4 (103). We are hoping this is due to him being neutropenic but the high fever is not a good start and the fact that it is not going down. He was complaining of a sore throat, but it has felt alot better after throwing up (imagine that). But other than that he has slept slept slept. He looks so sad and just plan ol' does not feel good.
Please pray we have a quiet night and Owen begins to feel better...
Have a good night.
Wednesday, September 27, 2006 7:51 PM CDT
Owen had a good day for most of the day. He was up and showered bright and early - done by 7!! He was full of chat and energy. Guess the transfusions did their trick! He was still full of it when Miss Tracey came tonight. She was happy to see the 'real' Owen, after seeing such a quiet one on monday.
Tyler continues to have a real runny nose. School said it was real bad today. I continue to give him cold medicine, but the doc says it is just a cold and he needs to stay off the anitbiotics for a bit. So we will grin and bear this and hope he clears soon!!!
Owen started not feeling good about 6:30 tonight. His belly is off. He feels a little warm but so far no fever. So fingers crossed it stays away!!! Now is the time we are likely to see a fever since he has such low white count.
I will keep you posted but we hope to just rest and be back to being Owen tomorrow.
Have a good night!
Tuesday, September 26, 2006 8:04 PM CDT
Its been a long day so this may be short!
Day started with Jakes Apple Orchard trip. We had alot of fun and picked lots of apples. Jake was glued to my side of course and just pointed out his friends to me but wouldn't leave my side for a second. He was very interested in the bee hive where you could see the honey combs being made.
Tyler got sent home from school. He was very lethargic at school and thought his breathing was labored. Mom went and picked him up and we both arrived home about the same time. Tyler seemed fine and played the rest of the day with no problems. He did have a diahrea late tonight Chris said but other than that he was fine. So we will wait to see what tomorrow brings. He is still fighting his cold but Ty generally does fight a runny nose from September - March. Hopefully someday he will grow out of that too!
Off Owen and I went to Syracuse, we arrived at 1:00. They took a blood sample to check to make sure he needed platelettes. From the slide sample it looked like he might need blood too. At 3:00 we were hooked up to the platelettes and he did need blood also. They wanted us to come back tomorrow morning for the blood, but I asked if we could just stay and do both today. I really didn't want to drive back to Syracuse tomorrow for anther 4-5 hours! They did agree. It did cause a doctor and nurse to have to work extra hours. Before if we had to stay past the 4:30 clinic hours they sent you up to 7H to finish up, but I guess this is not done anymore so they try to get kids who need transfusions in to clinic in the morning. Since the thought was we only needed platelettes the 1:00 appt seemed ok. I felt bad that the nurse had to stay - I knew she was upset and had to make plans for her son to get picked up, but I have had to drive back and forth from Syracuse so much in the last week I am just burnt out. So we watched a movie with Missy and even went to the cafeteria for dinner together. Owen's blood finished as we were finishing eating - so perfect. It was now 6:30.
We headed off to the Halloween store which Missy told us moved from fairmont to fayetteville. It was a great night to go as no one was in the store but us. Owen has only .6 White Blood cells so he has basically bottomed out and can not go anywhere now, so this was perfect to get this shopping done with no one around and now one less worry. You will NEVER guess who he is going to be!!! Yeah - Batman - what a surprise. But wait it is the Batman Begins costume - he has NEVER been him!!!
We got home at 8:45 and are ready for bed. But at least now Owen can sleep and rest tomorrow - no more running to the doctors. We have to check his counts again on Friday to make sure the blood and platelettes hold or if he needs anther transfusion. Otherwise unless he gets a fever (which now that he has bottomed out is a high possibility) we are home to stay!
Unfortunately with all this we had to miss tutoring with Miss Heath tonight. This has been a crazy start to the tutoring and hopefully things will settle down and we can get a little more stable schedule - then agian we have been on this roller coaster for quite awhile! Tomorrow Miss Tracy will come and so we should be home for that!
Have a good night!
W
Monday, September 25, 2006 5:47 PM CDT
Today was a quiet day. Owen had to go in for a blood draw. The results came back and he has dropped quickly since friday with his platelettes. He went from 149 to 26!!! They usually transfuse at 20 but since he dropped that fast we are going tomorrow to have a transfusion. His hemoglobin dropped some from 11.1 to 9.7 so not that much.
Owen has been very tired all day today and has slept most of the day. Miss Tracy came this afternoon to work on reading and writing. Owen lasted about an hour before he just wasn't feeling well to keep going. Miss Tracy is very nice and they seemed to get along great. Owen had been tired and grumpy all day until she arrived and he perked right up. I think he is enjoying having school time. She will be back on Wednesday. She said Owen is a very good reader and writer! I knew his reading is really good, but his writing still needs improvement. Although we have been having him practice daily and I have seen improvement from this.
I think we really found the source of Jakes rash! Mom got thinking today - that he was playing in her sand box on friday - the same day we noticed the rash when he started complaining of the itching! Sure enough there are little bugs in the sand - not sure what they are -sand fleas maybe??? Who knows but that is probably a very likely source!
So tomorrow I took the day off. I am going with Jake on his apple orchard field trip and then will come back and swap Jake for Owen and head off to the hospital for his platelette transfusion. Owen did want to go on the field trip and being outside I don't see an issue with it, however after not feeling well today I don't think he will go. We'll see what tomorrow brings. I just like to give him some options when they are available so he doesn't feel so trapped.
Until then... have a good night!
Sunday, September 24, 2006 8:39 PM CDT
A good day here. Papa W. and Grandma Lee came for a visit in the morning, with McD's French fries in hand so Tyler was VERY happy! Owen had his friend Dan over to play and that perked him up to put him in a great mood for Miss Heath. She came over late afternoon and Owen and here talked and got to know one anther and then did some Math. She went through the Union Springs website with him so he could check on things they are working on in class too. He was quite chatty with her so I think it went VERY well. She did give him some assignments that are due by Thursday. She told him when he wanted to complete them... oops wrong... I told her with Owen he needs to hear that he needs to work on them period. She laughed and said okay they must be completed by thursday when she returned. She might come tuesday but definately thursday.
Later Sean called for Owen to come play but Owen said he didn't feel much like going anywhere but could Sean come here - so sure that was fine. It will be a long week of not really doing much so may as well give him a last hurrah before he bottoms out in counts. So Owen had a great day I would say.
Tomorrow Miss Tracey will come to meet Owen and start on some social studies I think. So we are very excited to meet her as well. I am so happy school is finally underway. I think this will be good for Owen emotionally as well.
Jakes rash looks like it is drying up, so thankfully this does not appear to be scabies as it did not spread or get worse. Tyler's nose is still running on and off but it is getting clear so that is a good sign. Hopefully on the mend again!
Have a good night!
Saturday, September 23, 2006 6:39 PM CDT
Forgot to post Owens counts from his blood work Friday:
WBC 1.5 - an ANC of 1180 so still hanging in there as normal (below 500 is dangerous)
hgb 11.1 (transfuse at 8)
platelets - 149,000.
Much better day today than yesterday!! How could it not be! Tyler and Jake are still not feeling great but at least they were functional today. Tyler still has a very deep barky cough but so far today he has had no diahrea's - it was normal. They look tired and pale but hopefully it is just a couple of very nasty colds. Mom was saying over breakfast ( yes - I escaped to have a quiet sane breakfast) that she can't believe nothing is wrong, but you know we can be very sick with a cold and not need any other meds. I think we rush off quickly with Owen in the house hoping for the magic cure - but a cold is a cold.
Jakes rash doesn't look any worse so that is good! My friend Pam had a thought - the chlorine in the pool at the YMCA could cause an irritation. He has finally gotten into the pool and it is soooo heavily chlorinated that perhaps his skin had a reaction. We will continue to watch it but so far there is no change there.
I went this morning to look at a house with Mom - she is and has been thinking about getting out of here huge house and moving into a ranch. The house today was really cute and alot of room - more than you would think looking from the outside. We then went to breakfast, so I had a couple of hours of ME time and it was nice.
We decorated for Halloween / fall today. I need to restock as I lost some to the couple of floods we had in the basement this year. I got Tyler his Halloween costume - The Cat in the Hat - which is his FAVORITE video. When I took it out of the bag he went wild. Jumping up and down and screaming 'Cat in the Hat, Cat in the Hat!!!' He was sooooo cute.
I am re-formatting my PC tonight so if I don't update tomorrow it is because I ran out of time before I got it all back together.
Tomorrow Miss Heath comes to meet Owen and us - we are very excited. We have heard nothing but good things.
Have a good night!!!
Friday, September 22, 2006 5:45 PM CDT
Well remember how GOOD our day was yesterday? We paid for it today with the day from hell! Everyone is ok - but it was a long stressful day.
I got to sleep in - there is a plus to the day - since I had to have Owen in Syracuse at 9:15 I didn't go to work. As I was reading up on my caringbridge sites I could hear Tyler coughing - a deep barking cough - upstairs. Great, no school for him. I let him sleep but at 7:15 he was knocking on his door to get out. I went up and with one look KNEW he was definately sick. He had a diahreha almost immediately and was gushing at the nose. He just kept crying and wanting to be held - he was not feeling good at all. Owen got up and said he felt sick all over. Oh great!!! He had no temp and wanted to take a shower. So I continued to try and cuddle with Tyler and finish getting ready to go. Jake was up and he had a very hoarse voice.
Mom arrived and Owen and I headed off while we tried to think of what to do with Tyler. Jake had his 'teddy bear' picnic from 11-11:30 today at preschool and really wanted grandma or me to go. I didn't know if I would be back in time so Mom needed to plan to go. Aunt Judy came to rescue the day and stay with Tyler while mom went. THANKYOU Aunt Judy!!!! That meant alot!!!
Owen and I were making good time until just by fairmont 690 was at a standstill for as far as you could see for construction. So I turned off at fairmont and we went the rest of the way by rte 5, very slow and lots of cars. As we were almost to the hospital my cell phone rang. Half of our network was down!!! Oh great! We thought we would need to getting the cabling people back in who just completed a project for us. Luckily they figured it all came down to one bad cable - thank goodness!!! So needless to say we were late, arrived at 9:40. They sent us down to the lab for blood work, they don't like to access the port just for a little blood. Then back up and we handed over the $3000 shot (luckily our cost is 250 - still sounds high but trust me we had to pay full price before)! The shot comes in a 6mg dose and Owen only needs 3mg, what a waste! They tried to put half into another needle so that we could save the other half for when he has Ara-c in 6 weeks. But unfortunately in the transfer a little is lost so the remaining shot was like 2.8 and it is important to give the correct dosage, so it went in the trash - ouch!!! Now you can see why Shelly didn't want to mess around with getting the right dose .2 is everything!!!! Owen got the shot with a little ouch, and then he felt much better - I think he was mostly worried about the shot and that was why he felt off.
Back to Mom's where Ty was with Aunt Judy. He didn't want much of anything - including the McDonald french fries we brought him - so now your really KNOW he isn't feeling well. I hung out and just cuddled with Tyler and then went into work aroung 1 to go to a meeting and tie a few things up before heading to the doctors with Tyler. When I arrived to pick up Tyler, Mom said he had actually been acting pretty good, but Jake was coughing up a storm and had these very itchy rash on his side. Arghhhhh - now what! So I through Jake in the car too. Good or bad - neither boy had anything. Both are still just being looked at as colds. Tyler was probably in alot of pain this morning/ afternoon due to all the diahreha and mucus he had. Once he coughed all this up and had 3 diahreas the pain probably went away and thus acting better. She doesn't want to put him on an antibiotic as he just got off one and possibly this is causing his diahrea. Jake is probably a cold too, hoarse throat and cough generally means viral. The rash is not identifiable as anything yet. Possible 'scabbies' WHAT??!! He could probably pick this up from dogs, other kids and a multiple of things and the source may never be known. I have to watch the rash this weekend. If it starts to spread then I need to call and they will submit a presciption for it.
So we are all back home. I arrived to find a friend and god send for today - brought us pizza and wings and pepsi ( i am having something a little stronger LOL)! Bernie Bacon who is my cousins sister-in -law and our FAVORITE wegmans pharmacy person! You don't know how great that was to walk in and not have to think about dinner tonight. THANKYOU THANKYOU THANKYOU Bernie - we love you!!!!
Now if we can get through the rest of the night and this weekend with no further issues!!!!
Have a good night - we HOPE too!
Thursday, September 21, 2006 8:09 PM CDT
Good day all the way around. Owen woke up feeling crummy with an upset stomach. Mom finally had him get out of bed late morning to see if being up and about helped and it did. I will take him to Syracuse tomorrow to have counts done and to give him the Neulasta shot. Aunt Shelly wasn't comfortable giving it to him because it is not a pre-measured shot to his weight. So you have to waste part of the shot to the right amount to dispense and the syringe has no measurement on it! So needless to say that is a pretty scary thought to 'waste' part of a $3000 shot but make sure he gets enough!! Don't blame her there. So we will go to Syracuse - which is good this way we can see where he is on his counts to know if any fevers are a dangerous fever or still part of the chemo fever. Such a fine line to draw....
Jake went swimming again today - yeah!!!! Hopefully he continues to like this.
I dropped the boys off to Aunt Shelly tonight while I went to Tyler's open house. I wasn't sure if Ty was suppose to go so I left him there which he was happy - he got to watch videos!! He is still banned at home. Boy talk about memory lane walking into Port Byron school again! I haven't been in the elementary school since who knows when, and even the high school was 3 years ago when we were planning our reunion - and I won't tell you what year reunion!!! The school looks great and Tyler's room is wonderful. They seem to be settling into the new environment well, a few changes from Jordan Elbridge, but most a good changes. We discussed Tylers behavior and hopefully remaining tough a school and at home he will settle in. I met his 2nd grade mainstream teacher and he is in the same class as my girlfriend Joanna's little girl Mary and friend Missy's girl Ciara, so that is nice! I saw soooo many people I knew. People I graduated with, or around the year I graduated. Teachers who I knew and other people from Throop I knew. It was fun running into everyone. My cousin Nina was there with her son Jordan, he tells everyone that 'Ty Ty' is his cousin. How sweet is that!
Back to Aunt Shelly's and the fun is on. The boys are running and being boys! It was great seeing Owen running and having fun. He needs things like this - it really keeps his moral up. So after visiting a bit - it was time to drag the boys out...
Home again and off to bed. So like I said all around good day!
Have a good night!
Wednesday, September 20, 2006 8:57 AM CDT
5:30 pm update:
We made it out of the hospital at 1:30. Owen still was not feeling good, his stomach was still quite upset. They took blood to run a CBC to see where his counts were to give a border line for when he left and sent us on our way. We arrived home around 2:30. He went right up to bed and dozed on and off. He is running a fever right now 38.7 (101.8). I called the doctor but she said that he still did have some counts and that for now we will assume it is still due to the Ara-C chemo and not an infection. This chemo has a high tendancy to cause a strep infection in the blood following it and that is why calling in for a fever is so crucial now. So I was able to just give him Tylenol and let it go for now. I told Owen this is the LAST fever he is allowed to have. He gave me a smile and said he would try - he was getting all upset at the thought of turning around and going back tonight. He did just ask me for grapes - which is good - this is the first he will have eaten since yesterday morning and that was just ice cream.
Tyler is getting into quite the trouble at school not listening and behaving. I have spoke to him several times about it and he KNOWS exactly what I am talking about. I had packed up most of the videos in the house prior to school beginning because he can be a nightmare with videos, wanting one right after another ( 5 minutes of each one & not even watching them). So today I packed away ALL of his videos. He was frantic when he got home looking for them. I told him they were all bye-bye because he wasn't being good at school. Don't know if this will help, but it can't hurt. He is busy playing a V-tech game now, but this is better as it is matching shapes, counting and matching sounds - much better to spend his time if he wants the TV on.
Jake had a big moment at school today. He went swimming!!! Usually he won't swim on wednesday and thursday he doesn't like the water. Go figure with us having a pool. But even in our pool he has the death grip on your neck and will not swim with a bubble so swim lessons is a no go with him. He was VERY proud that he went in and was kicking and even put his 'eye' in the water. Yeah!!! He is even excited about tomorrow going back in.
So here's to no more fevers and no more bad behavior at school! Owen will meet his teacher this weekend on Sunday if all goes well and no more fevers, and the other tutor on monday. Hopefully this will give him time to start feeling better again.
Have a good night!
**************************************
9:00 am update:
Owen's fever has gone away. His stomach continues to bother him. He was just given some benedryl with some anti-nasusea med in it. Other than that we are on schedule to go home. He has his Emla cream on his legs for the Aspariginase shots. They should be in anytime to give that. Tomorrow he will need the Neulasta shot to help his counts come back. This chemo really causes his counts to crash and his system needs the help to rebound. I will be calling on Aunt Shelly again to give him his shot tomorrow!
I will update later tonight when we make it home but looks like we should be leaving by noon.
Tuesday, September 19, 2006 8:17 AM CDT
7:33 pm update:
Owen started out good today. He went to tutoring with Mary Ellen and worked on synonyms and and antonyms. Then he went with Carol the life specialist volunteer and read for a while. Then off to the shower. He was freezing and thought a hot shower would help. It is like zero degrees up here!! He took a looooong shower as it felt good to him. I read him a Goosebumps story while he was in the shower. Then back to the room, and we just kept on reading. Once Owen gets going on a Goosebump he has a hard time stopping! He started getting really cold - and bingo he had a fever. 36.6 (101.6). The chemo can cause a fever so they were not worried about it. A little while he felt really hot to me so took his temp again 39.1 (102.1)!!! Now they are taking cultures to make sure there is no infection. Hopefully it IS just the chemo causing it. He doesn't feel good but mostly achy due to the fever.
Tyler and Jake are at Dad and Leannes. Our baby sitter ended up really sick, and we can't afford to have the germs in the house or spread to the other boys. They are in contact enough at school. Thanks for thinking Sam! We definately want to take the 'safe' road as far as that is concerned.
Hopefully Owen will feel alittle better. IF all goes well and the fever breaks and nothing grows in the culture we should be released late morning or early afternoon. Doctor said they have most of the paperwork already done!
Have a good night!
9:15 am Update:
Owen started his chemo yesterday at 4pm. He also received steroid eye drops to help prevent infection in his eyes.
This chemo can cause eyepain, sensitivity to light etc. By 5:30 he wanted to go to the room and lay down he was feeling sleepy. He took a power nap and then was awake but complained that his back and head were aching. He wanted Tylenol with codeine as regular tylenol doesn't help with his back pain. The resident approved it and went to put the order in. In the mean time Owen had to do an albuterol treatment and then the pentanamine treatment. His head was pounding by the time we finished these. He was in alot of pain. The Tylenol finally made it and in about a half hour he was feeling better. Around 9:30 he started to get sick. He threw up quite a bit, but felt alot better after throwing up. He took some benadryl to calm his stomach and slept peacefully the rest of the night.
He is just waking up now. He has another headache starting now. The student nurses are here today so he has lots of playmates! MaryEllen (his hospital tutor) is also roaming the halls looking for students so he will be going with her as well once he wakes up a little.
Docs just left and she is switching the anti-nausea medicine to be more frequent to try and prevent Owen from getting sick.
I'll let you know how our day goes...
Monday, September 18, 2006 3:50 PM
Our room is 7611 and phone number is 464-3687
Just a quick update - Owen passed counts!!!! So we arrived at the hospital around 1:20. Had a checkup and then an xray to take another look at his lungs. He still has a crackle in the lower portion of his lungs so we will continue the albuterol treatments while we are here. He will also get his Pentanimine breathing treatment that helps prevent the PCP pnuemonia. The xray looks very good and 'almost' normal. So the chemo is a go.
He was just accessed to his port and we are waiting for the chemo to arrive on the floor which should be shortly.
Owen is in a wonderful mood, except that the new pokemon game was to be released today - but no stores have it. They all said it is 'released' to ship today and they will have it tomorrow in stock. So he was quite upset over that big 'rip off!'
Sunday, September 17, 2006 5:13 AM CDT
All is well. I had a marathon clean and disinfect day, and Owen had a Papa and Grandma Lea day.
They took him golfing so he was very excited. He continues to have some good shots AND they were able to make some corrections to how he was swinging / standing. So that helped alot. He wanted no part in driving down the no. 6 hole this time! So the fresh air and exercise is good for him and you could tell when he arrived home, face was beaming and nice color in his face. Thankyou Papa Fred and Grandma Lea!
Not sure what is going on today. We might take the boat out for a last ride of the season. Tomorrow we will have Owens blood tested to see if we are a go for the afternoon. His teacher was suppose to come tomorrow and Tylers ARC evaluation as well.... BUT I am all for cancelling to get him back on schedule. It will be 4 weeks delay this week!
Have a good day.
Friday, September 15, 2006 5:04 PM CDT
Unfortunately we are STILL home! He is still low - however he is up to 480 with lots of neutrophils which generally means he is on the mend and coming back up! They are pretty sure he will be fine by Monday. Soooo Monday morning he will get his blood tested again and we will wait to hear on whether or not we go in in Monday afternoon.
I did complain to the nurse today. Blood results have been taking so long to come back lately. Both when we were at the University having them tested and now when he is having his blood drawn early morning. It is taking 4-5 hours to get the results. This is ridiculus! Mom did call the lab at Auburn to see if they faxed the results this morning and they did, but did re-fax them per her request at 2 since we had not heard and my call to the nurse had yet to be returned. The nurse said she did not know why they were taking long. Today was crazy at the clinic and she didn't see his results until after 2. But I said it is not just today. The last 4 times have been several hours. She didn't not have an answer for me. I will pursue this at the hospital. It just makes life so much more hectic waiting, I can't give my sitter answers to whether she needs to come for Ty and Jake or will be needed early morning.
Today Jake woke up with a very Croupy cough and fever. I did take him to the docs this afternoon, not wanting to take any chances with Owen. He did seem to feel better later in the afternoon, but with the weekend coming....
So yet another reason I needed those blood results, Jake had to be at the docs at 3:30, which was when Tyler gets off the bus, and if I was at the hospital and Mom had to take Jake now I needed someone at home. So now I had Pam on stand-by for Tyler and was hanging at the phone. Arghhh - it was very frustrating!
But all that said, Owen is in a great mood so fingers crossed he really is on the mend. Jake ended up with nothing visible (probably just a cold), so as long as he doesn't pass this to Owen. Lots of hand washing and separation this weekend!!!
At least no one in my family eats spinach!!! One LESS thing to worry about.
Have a great night!
Wednesday, September 13, 2006 5:52 PM CDT
Another good day. Owen woke up slow and grumpy but once the day went on he started talking. Of course most of that was to antagonize his brother Jake. They spend most of the day fighting over nothing. Grandma has a splitting headache by the time I get here!!! Definately need something to do during idle times. He is complaining of his urine stinking - so not sure what this means, I will have to call on that.
I spoke with Miss Heath today - Owens teacher. She will be out on Monday after school. Mostly to meet Owen and do some getting to know you exercises and then they will start Math on another session. I can't wait - Owen needs this. I do think I need the table in his room for working - it is just too busy with Ty and Jake and also me trying to get dinner going. I can see it being very hectic downstairs to make it very productive.
We made a Halloween candy house tonight. Jake mostly ate the icing and candy - but it did eventually get done!
Have a good night!!
Tuesday, September 12, 2006 6:17 PM CDT
Owen did not pass counts today again! He dropped even more to 230 from 390. So obviously he is still fighting something. Maybe even the virus from Jake. He will have blood work done again friday morning and hopefully we can re-start chemo on friday afternoon. I am starting to get nervous with this long delay in chemo. He on the other hand was feeling great today so hopefully that is a good sign. He is still on the antibiotics and albuterol treatments so they can continue to work on any infections in his body.
I spoke with the principal at AJ Smith today and his home tutoring will start next week. 2 hours a day monday- thursday, plus any homework sent home. I think it will do him good to start working with the tutors VS having to work with Me!!! He does so much better and is willing to put more effort in with anyone else but me. Tutoring will take place after school hours, so I will probably set up a table and chairs in his room so he will be removed from the caous of home life while he is working.
Other than that nothing really to report.
Have a good night!
Monday, September 11, 2006 7:12 PM CDT
Another good day. Owen woke up very stiff and sore today. Hmmm could it be that he used muscles that have not been used in a loooong time to play golf? Especially his arms were sore, pretty good indication I think. Zarina (our NP) wanted to wait until tomorrow morning to check Owen's counts. The chemo doesn't start until 3pm anyway so having his counts done in the morning will give him that extra day to recover more. He will go to Auburn Memorial after Jake gets dropped at school and have his blood draw. So we should know by later morning whether we are off to the hospital or not. Zarina did order another 7 days of antibiotics so even if he doesn't go he can continue on these to help heal him.
Well today was the BIG day for Jake. He was very excited when he woke up to go. However as Grandma and him made the walk up to the YMCA, his paced slowed to a crawl and he didn't want to go. By the time they made it to the room he was glued to Grandmas leg. Finally Grandma got him pried loose and he began to play with play-doh. As Grandma saw her room to excape she looked back to Jakes wide eyes, terror setting in. She continued on and heard no cries behind her. At 11:30 she returned to find a totally different Jake. He liked school and he wants to go back again! He has a friend Logan too. When I asked him on the phone how school was he exclaimed "Good - I stayed all day!" LOL
Grandma Lea and Papa Fred came out for a visit tonight to see the boys. It was rough house time from the start! They just love to wrestle.
Well fingers crossed we are a go tomorrow!!!!
Have a good night!
Sunday, September 10, 2006 6:53 PM CDT
Another good day! Aunt Shelley, Uncle Pete, PJ and Grandma Bonnie stopped by after brunch for a visit. This got Owen moving - dressed and some good play time. Thanks for the visit!!! ( plus gave me an excuse to break in my outdoor cleanup!)
Later Owen and I went golfing. Yes golfing! Owen was bored and wanting to do something. I suggested miniature golf and he thought real golf. I said are you sure you are up to it? Yep. So off to Indian Head. I told Robby that we would probably only play 3 or 4 holes. So I think to prove me wrong we played 5!!! Owen did alright, for basically his first time. He would hit the ball 15-20 yards most hits. He had some duffs (don't we all) but we had a nice relaxing time and I was so glad we did this. I tend to try and focus on Ty and Jake when I am home and know we are going into the hospital because I am disappearing from them. Or we all do something. So Mom and Owen time are not very often - except in the hospital but that doesn't give us too many options for doing something different. So I think this was very special for both of us. We had alot of laughs. I let Owen drive the cart. Which was fine until coming down 6 (a very steep hill) Owen gunned it and I think he kind of panicked, although he said the cart went out of contorl. I had to catch my breath and grab the wheel! We survived and then headed in for the night.
We are home - had quick tubs and are watching the Shaggy Dog before we turn in for the night. Tomorrow is Jakes FIRST day of school. Fingers crossed all goes well. I told Tyler at dinner that Jake was going to school tomorrow and he said "NOOOOO - Ty Ty school" Yes you too buddy!
Owen still has a cough, but it has turned into more of a tickle cough. He keeps doing little coughs like he just has a tickle in his throat that won't go away. I hope this means we are nearing the end of this infection and we can re-start our battle against Leukemia. All this infection going on we can't forget about that monster lurking in the background. We don't want to give it too big of a window to strike. Owen has now been delayed 3 weeks from starting his chemo back up! Tomorrow we will do blood counts so hopefully it shows counts are up.
Have a great night!
Saturday, September 9, 2006 7:58 PM CDT
All is quiet here. Owen went to his friend Sean's house to play for a while today and it seemed to be a definate up lifting thing! He came home beaming and in a great mood. This is about the limit of what he can do but at least he has this and it does brighten his day! Thanks
Sean!
I took Jake to the doctors today. They do NOT think it is chicken pox - big relief! However it is probably something viral (isn't everything!), and unfortunately he is probably past the time where isolating him would do any good. It is in our house and Owen has been exposed already. So hopefully nothing comes of this and who knows
maybe that is why Owen's counts dropped. I still believe it is due to what ever is still going on in his lungs.
So needless to say today was a clean the house day! After that Tyler, Jake and I were out to play. We played on the swings and then I drew a road in the driveway and they raced their cars. They each had a house drawn, a beach to visit and then I pulled their play house close to the pretend road and brought out the McDonald play stuff. This thrilled them to have a drive through! They took turns working and waiting as we came through to order our french fries! Then we came in and each sat down with their leap pad's and did lots of 'reading'. They really had a good productive play day today.
Owen is home and we are off to early bed and watch a movie. Hopefully tomorrow will be another 'quiet' day.
Have a good night!!!
Friday, September 8, 2006 8:36 PM CDT
Well to make a long day short - we are home Owens ANC was only 390. Anthing under 500 is considered immune suppressed and dangerously low. He has to be at a minimum of 750 to start chemo. We will take new blood counts on monday to see if we can start on tuesday.
His pulmonary function testing was low today. He had to do all sorts of blowing tests on the computer. He has to try and blow a kite in the air, blow out candles on a cake and he was also the Big Bad Wolf and had to blow down the little pigs houses. He was able to do the straw and stick house but only got part of the brick house. The doctor said he still has alot of crackle in his lungs. He looked at the xray that was done earlier this week. He said that it was not one area that was affected. That it was sort of a dispersed infection throughout his lungs. This can mean a couple of things. That the infection is breaking up and kind of flowing through his lungs or something more complicated. In order to determine which they would need to culture mucus coughed up by Owen or put him to sleep and do a lung wash. Basically this is a scrapping with a scope of his lungs. After talking with Dr. Dubowy they decided they do not want to do the lung wash yet. That Owen seems to be feeling relatively well so that tends to mean it is not something more serious. So Owen was given an albuterol treatment there and then some chest PT to try and loosen some mucus up and get him to cough it out. Mostly Owen coughed out saliva but there was a little bit of mucus, whether it is enough to get a good culture on is questionable but they will try. He does want to repeat the pulmonary function testing again in the future when Owens lungs are not bogged down with infection to get a baseline of where his normal function is to determine if there is any damage to his lungs from all the chemo and radiation he has had. Dr. Dubowy will let him know when this should be repeated.
So off to 7H. We put some Emla (numbing) cream on his port and at 2:30 they did the blood draw. The doc's thought he sounded and looked better than he did on tuesday and if his counts were okay they would start the chemo. Needless to say the results took FOREVER. It was 5:45 before we learned Owen was too low to start. At that point the fire alarms were going off at the hospital and a whole fleet of fire trucks came pulling in. So we watched out the window in our trapped room, as we couldn't get discharged as this was going on. They hooked up the hoses but then never actually had to use them. A bunch of firemen were in the hospital and then one by one they left, folded up the hoses and it was over. So it was alittle exciting but just delayed us once again from leaving.
Finally out the door, Owen wanted to go to Applebee's for dinner, but so sorry Owen, it is Friday night - restaurants are packed and you have no immune system! He was so bummed and withdrew into himself. I feel sooo bad for him. This is going to be along 24 weeks (probably alot longer with these delays continuing to happen). I told him we could do curb-side service but he wanted to go in. As we were getting close to Auburn I thought of the Drive-Ins, he can go to these movies! So we called Nic our sitter and she looked it up. The Invincables and Pirates of the Caribean. Nope, Owen didn't want to see these. But hey at least we have thought of something fun he CAN do!!! This seemed to perk him up. I told him I didn't want him to get so sad over not being able to do things but we would have to pick and choose carefully and even do some fun things at low attendance time. We'll take it a day at a time, but #1 was looking out for his health and not doing anything to risk it.
Tomorrow morning Daddy and him are going to go fishing - so this is good for him! I will probably be taking Jake to the doctors. He has some red bumps on his arms, stomach and back. HOPEFULLY NOT CHICKENPOX!!! That would be really scary with Owen. They have all had the shot for it, but they can still get mild versions of it. I have no idea where Jake could have picked this up, he doesn't start school till monday! Never a dull moment...
Well till tomorrow... have a good night!
Thursday, September 7, 2006 7:03 PM CDT
A good day for everyone I think. Tyler was off to his first day of school today just beaming ear to ear. He was really excited and yelling to grandma when the bus pulled in. School is so good for him, it is a nice scheduled, regular routine which is important to Tyler and with our lives doesn't happen too much around here! When I got home from work and asked him about school - he was jumping up and down - so excited by his first day. His bus was late to school - got stuck behind a broken down bus blocking the road but that did nothing to the excitement of his first day. Tyler started at a new school this year. He is now in the Port Byron Elementary school. He is still in the same boces program and the same teachers - just the location was changed. I feel this is good though, gives him a little bit of change in his routine to get use to, and will help prep him for the change of his program next year, yet still alot the same to give him his comfort zone.
I even had a better day at work. My boss came up in the morning to see how I was doing. He said he could tell yesterday I was there physically only but my mind was a million miles away. He wanted to tell me he appreciated me coming in and doing whatever I can when I am out BUT to make sure I did whatever I needed to do. How wonderful is that. I just can't tell you how great Nucor has been both this time and with Owen's initial diagnosis. They have stood by my side 100 percent and that is one less stress point for me!!! THANKYOU!
Owen went to Pam's house while Jake and Grandma went and got their haircut. Owen did LOTS of math work while at Pams!!! Now go figure - no tears - no fuss - happy to be working with Pam. Maybe I need to hire Pam to work with him on homework - or she needs to tell me the secret! Owen is feeling good, still has a cough, but I think it is sounding alot better. I am very anxious to hear the results of his pulmonary function testing tomorrow to find out if there is any damage to them. So if all goes well with these tests and if his counts have not dropped due to this congestion then we will start chemo tomorrow around 3.
I am anxious to start the chemo ONLY if he is sounding strong enough. We are now 3 weeks behind his schedule so I know it is important to start that back up. But again only if his body is ready to handle it as this is a very strong chemo.
I will let you all know where things stand as soon as I can tomorrow. But until then... have a good night!
Wednesday, September 6, 2006 8:21 PM CDT
The first day of school... came and went with no Owen... just kind of makes you sad that he is missing yet another part of his youth. I still think we have made the best decision, ICU is still too vivid in my mind to risk any kind of infections. Owen is actually coughing worse today and his chest was hurting him. I did talk to Zarina and between the albuterol treatments and the Chest therapy alot is probably being broken up and thus causing the coughing. She did give me her pager number so IF I am ever nervous and need to reach her quickly I can - so that makes me breathe a little easier. I am very nervous over everything now. But better safe than sorry.
He did call me crying today with how much pain he was in. I was a wreck. It was also at the time he was having to do math... so I was trying to get across to him HOW important it is to let me know when he is really hurting. He told me he was a 5 on the pain scale. He took a tylenol w/ codeine and went outside with grandma to get some fresh air and watch the little two. He started laughing and relaxing and feeling better. He did then admit to grandma - he was stressing over the math. He thought I started out with too hard of a review sheet. So grandma got him calmed down selected an easier review sheet and he was good to go and did math, cursive writing and some reading comprehension.
I did talk with both his teacher Miss Heath and the principal at AJ Smith, Karen Burcroff to find out where and what has to be done for starting tutoring. Karen needs to check into the districts regulations on what needs to be done, if a doctors consent is need for keeping Owen out 6 months. Previously we didn't need this but Owen was intending on going whenever he felt well enough. This time we are certain he will miss school until this intensification phase is complete. I told her for some reason we changed our minds and saw Owen as stronger we could cross that bridge then but my initial feeling is we will not take the chance. He will be spending too much of these next weeks at a low immune system and winter is coming with all sorts of infections and virus'.
Today was hard for me returning to work after 2 1/2 weeks off. Alot of people stopped by to see how I was holding up or to check on Owen and everytime tears welled up in my eyes. I use to always say that he was doing great and a few little bumps in the road, but now all I can envision is those nights in ICU - especially the first night - waiting to see how the night went. My fear rises up before I can even talk. I am just not as confident and secure as I always have been and that scares me. I appreciate everyone for all their well wishes and hugs they had for me, trust me they all do help. I will regroup and find myslef again - it will just take time. I feel like I did when we first found out Owen had leukemia or when he relapsed. It takes my system a while to digest and figure out what I need to do, but as I know all to well we have to move forward and take each day as they come and not keep looking back.
Tonight was Jakes preschool open house, so I was happy that I was home to take him instead of being at the hospital. He is attending the YMCA this year VS the gavras center. He sooo wanted to go back to Maureens class but we thought he was ready to move up to the Y and fingers crossed they will make progress with his swimming! We will have to visit the Gavras though- I promised him!!! He was VERY timid going in and clutching to me. He was known by the teachers as they all had Owen. He found a dinosaur puzzle and that helped to break him in. We then built a road out of interlocking blocks and with, and several other activities. His teacher Mrs. DeGroff tried to talk with him but he was glued to the back of my legs and I couldn't move him. It took him a while to warm up at the Gavras and I am sure he will be fine after a couple days at the Y. It was quite packed and busy tonight as it was all classes together. He told me on the way home that he did like it- it was fun, but I had to stay with him next time too..... oh no....
Thankyou Pam (and Samantha) for staying with Tyler and Owen while I ran in for this!!! It made it easy and Owen was happy to have his friend Sam and his Big buddy Pam here! They were laughing and trying to figure out Owen's profile sheet that he has to fill out for his teacher - his favorite things, what he did this summer...etc. Pam is also going to watch Owen tomorrow while Grandma Pat and Jake get their haircuts - so thankyou again! Pam told Owen he could bring some work to do with her.... awwww ... Owen wasn't counting on that! Yep every chance we get we will get you working Owen!
I am off to bed I feel quite drained after today and am hoping I will crash.... I usually am tired and then lay there for a few hours unable to sleep.
Have a good night!
Tuesday, September 5, 2006 3:57 PM CDT
Owen's chemo has been cancelled. I can't say I am sad, I am actually relieved.
They didn't like the crackle they were hearing in his lungs still, along with the fact that he has been running warm constantly now. A chest x-ray was ordered.
His blood counts came back and he needed red blood. So they drew more blood from him for a type and cross. Then off to xray. The xray came back and actually did not look bad at all.
The doctor and Zarina were listening to him again and trying to decide. His ANC level was 740 and usually they want a level of 750. So they were debating whether to start. Zarina
looked at me and asked if I had an opinion. I said I really
didn't want to start. Chris and I have been saying all weekend how we didn't think Owen looked good and that we thought he needed to get stronger for this hard dose of chemo.
So she talked with Dr. Dubowy and they have agreed to push it off until friday.
Owen will get albuterol treatments 4xday and I have to give him chest PT, which basically means after his albuterol I have to pound his back and sides with an open cuffed hand to loosen anything up in there. I told him people would be lining up for miles to get the chance to 'beat' on him!
I have to say I am relieved not to start - he is still coughing and even now his temp is 100.2 - at 100.4 he is considered a fever. Knowing this and they are releasing us - IF he runs a fever higher than 101.5 - we have to call. We are still here and probably won't get out around 7pm, this is how long the blood takes (about 4 hours ) So yes it was a wasted day - but I feel much better and don't care - I am glad we are not starting
On friday Owen has a 9:30am pulmonary appointment - which I think works out great. They should be able to get a good reading on his lung functions and know where he stands. If all is well we will go to 7H after and start the chemo around 3pm. So we will be in most of the weekend - getting out late sunday morning.
So a few more days of rest - yeah!!!
Have a good night!
Sunday, September 3, 2006 4:01 PM CDT
Another quiet day - yeah! Quiet is good. I went into work this morning just to get through my mail that has piled up the last 2 weeks with me out and I will be out this week too.
Other than that we have just been playing with lincoln logs, puzzles and reading. Owen went to his friend Dan's for a couple hours to play. I think this helps just letting him some play time. Thanks Dan for being there and being a good friend to Owen! He is still very quiet and hard to get to talk. I will definately be having Colleen work with him on some emotional exercises this week while we are inpatient to try and get him to open up.
Tyler continues to have diahrea. I am so glad all his tests were done on friday and hopefully by early next week we can determine why. He has had 3 already today! He is being retested for celiac disease - which is a diatary disorder where he would not be able to eat anything with flour. For Tyler this is pretty much his whole diet. We pray this is not the case but would certainly explain the diahrea. Down Syndrome children are very prone to this. He was tested for this a couple of years ago and he was fine but it can develop later on and the test should be repeated every couple of years. I just hope we find out some answers and that it is NOT dangerous to Owen!
We go in tuesday morning for the Ara-C chemo - this one seems to hit Owen the hardest so please pray his little body handles it okay. I am still very nervous of hitting his system already. I have to put my trust in the doctors that he is ready. We should get out sometime on Thursday - the chemo is four doses every 12 hours and then one shot of Aspariginese 6 hours after completion of the chemo. I believe he will also have to have the shot of Neulasta following this treatment. The neulasta is a shot given at home to help boost his counts back up. After this chemo - he usually receives this as this is the big chemo that will knock his counts down to nothing and his system will need that additional help to recover.
On Friday Owen goes in to have a bunch of pulmonary function testing down on his lungs to see what sort of shape they are in after all he has been through.
Have a great night!
Saturday, September 2, 2006 8:57 PM CDT
All is well here. It was a quiet day, cleaning, doing some puzzles and reading. Owen was in a quiet but good mood.
Tonight Papa Fred and Grandma Lea brought out a delicious dinner - Steak, crab legs, corn and salad. Papa W. and Grandma Lee brought some huge stuffed portabella mushrooms and stuffed pears with blue cheese. We ate and ate and ate some more. After the crab legs - 15 lbs! we weren't sure we could eat any more but we managed a little bit. We ate like kings and had a nice relaxing night! Thankyou Thankyou Thankyou! I basically did nothing but enjoy the night.
Origianlly Papa W. and Grandma Lee wanted to go out for dinner but I am not comfortable leaving Owen not Ty and Jake. I am gone so much lately and with things so wishy washy with Owen and my other boys missing me I told Chris I just want to stay home. I am not into going anywhere. So tonight was perfect! I can't thank you all enough - it was fun, relaxing and not having to cook is always a plus!
Owen was quiet at the beginning of the night but warmed up and was laughing and smiling by the end. His smile just brightens my day so much.
THANKYOU AGAIN FOR AN ENJOYABLE NIGHT!
Have a great night everyone.
Friday, September 1, 2006 6:42 PM CDT
A good day all around! No more fevers - yeah! The nurse came this morning at 7:30 and took the needle out of his port. Owen was still running warm 99.5 but had not spiked since last night.
I took the boys to the doctors - all is well there, but Dr. Bright wanted to take the pro-active road with everything going on with Owen. She wanted Tyler to have blood work, sinus x-ray and a stool analysis. So we stopped at the hospital and took care of the x-ray and blood work right away.
Owen got a package in the mail today from Aunt Alice and Uncle Chet in Maine. Lots of goodies. A journal to write down his activities / thoughts each day or when he felt like it. Some playing cards and Uno cards, stickers, markers, Christmas ornaments ready for him to color, and a wooden model car to put together. Wow! Thankyou!!! Owen loves mail and of course presents, but these will all come in handy and some nice activities to keep him busy and off the video games too!
My cousin Lisa and her daughter Katrina ( one of Owens greatest loves) stopped by to visit. Owen immediately perked right up and was grinning ear to ear. Katrina and him snuggled into the couch and we spent the next hours talking and Owen seemed very chatty and content. We ended up watching part of the King Kong movie - Jake needed to show them the dinosaurs in it! So thankyou so much guys - it was a great afternoon and nice to see Owen smile and not spend the day talking and worrying about Owen. So thankyou tahnkyou again - come back any time!
Tyler ended up having a bowel movement so I headed back to the hospital with the sample and ran into Wegmans for some things. Owen called - I needed to call Uncle Steve about squirrel hunting. I said when tomorrow morning? NO - right now! I asked if he thought he would be up to walking in the woods. He said Uncle Steve told him he would drive right into the woods and he would only have to walk about 10-15 feet. So OK - and off he went. It felt so good to see him smile today and then be so excited about being able to do something. He got home around 7:30 from hunting. No squirrels but lots of mosquitos! He had to walk farther than he 'expected' but did okay - he only fell once and was alright. But I could see the excitement in his eyes and the glow in his face. So needed and so nice to see! Thankyou Uncle Steve!!! Owen said no more walking tonight - he did enough for me and the doctors today!
We just had some visitors from Owens friends Sara and Sam. They came bearing home cooked brownies - made by them!!! And yes they sampled so they know they are good. And a Toby Keith concert shirt from Sam's mom Pam! Owen was speechless, but wearing that big grin! He did have a mischievous grin when they told him he had to share with his brothers ( the brownies ). Thankyou so much!!!!
We are settling down now to watch a movie. How uplifting a day can be - I think we all needed today! THANKYOU EVERYONE FOR TODAY!
Thursday, August 31, 2006 8:33 PM CDT
It was a good/bad day. I will just go through the day as it happened. I had to go to a safety meeting at work at 10:30. We have to attend 1 safety meeting a month and here it is last day and oops I never went yet. So I went in and Mom came out with the boys. Owen was grumpy all morning. I got back home at noon.
I had a talk with Owen about his attitude that it wasn't helping and read him a quote that was on another caringbridge site - about how our attitude is 90 percent of how our life will work. He seemed to listen and did perk up and start talking. Of course he wanted a friend over and I am just not comfortable with how he is looking or feeling to even allow that yet.
Tyler, Jake and I played outside and I was puttering with cleaning out the garage and burning boxes. A car pulled in and a lady got out and wanted to paint our scenery across the road of the fields and farms. Ok by me. This thrilled Jake and Ty - they wanted their easel too. So I got out their paint easel and got them set up outside of course. The poor lady came to paint and they kept yelling for her to come look at their art. She was really sweet and kept coming to look. Not sure how far she ever got on her own project with my little artists interrupting her.
Then it was time for Owens IV. About 10 minutes in he started coughing and coughing and wouldn't stop. So I turned off the IV and we waited, the coughing did go away. Great - his last day on the antibiotic and he has a reaction! I started the IV back up on a much slower drip and this did the trick. So now I am running each bag about an hour. Thank goodness there is no 2am tonight!
I kept puttering putting some of our outdoor chairs away in the basement and Ty and Jake continued to play. Owen was up and about surfing on the computer and in a good mood.
Then at 6:30 he spiked a fever! 101.0 - he begged sobbing not to call the doc - he didn't want to go to the hospital. OH I know honey but we have to call. Dr. Kennedy was on call. She said since he was still on the antibiotic it was okay. He was running warm in the hospital all week and here at home too - hovering around a fever. So she thinks it is just some of the mucus breaking up in his lungs causing it and nothing to do with an infection. Owen felt fine - so different than our nightmare last week. She wanted me to give him tylenol and watch him. If the fever continues or got higher I needed to call back. If he still was having fevers by morning I needed to call and they would want to see him. So about 20 minutes later I took his temp and it had gone up 101.2! Chris is out of town for the night. So I called mom to put her on alert, in case I needed to drop the boys to her. She decided to come out, I think she sensed the rising panic in me. By the time she had arrived the tylenol had kicked in and his fever was going down. He is now at 99.4 Thankyou Mom for rushing out to my side!
So much for my first night of real sleep with no IV - I probably will be sleeping with one eye open and a hand on the thermometer all night. Owen says he feels fine and that makes me feel alot better. He is acting fine so I pray that is all it is. I am definately loosing my 'strength' in all of this. I am feeling scared and the tears well up in my eyes several times a day or whenever I talk with someone about Owen. I need to re-group as this is not going to help, Owen is loosing his rock solid attitude that he has always had and maybe that is what is crashing me too. My 'rock' - Owen - is faltering. We need to keep the faith and just get through this rough time, things will turn around we just need to get there and take it slow.
Tomorrow morning the home nurse will be out to de-access the needle from him. She will train me on this as well in case I ever have to give him antibiotics at home again. I think I can handle that - thank goodness they never allow parents to actually access the sight - putting the needle into the port! That may be pushing my skills too much. Owen thinks I should just be a nurse - then we could stay home from the hospital more! He says I would go through med school fast because I already know most of it! I just need to learn needles. Who knows maybe I'll take up a new profession!
Ty and Jake have their annual Well checkups tomorrow morning with the doctor and Grandma Pat will watch Owen - all with no incidents we hope.
I wanted to take time out to thank my friend Anna who made us a WONDERFUL stuffed porkchop dinner this week! She brought the porkchops, salad, corn and strawberries for dessert. Her daughter Erica and Kevin (erica's boyfriend) ate with us. Anna cleared the table loaded the dishwasher and did any remaining dishes. How sweet was that! THANKYOU THANKYOU THANKYOU!
It was delicious and VERY much appreciated.
If I don't say it enough I love all of you in each and every way you are supporting our family.
Have a good night... I pray to have one as well..
Wednesday, August 30, 2006 9:22 PM
All is quiet here, thank god. Owen is still getting warm several times a day but it is always hovering between 99.9 and 100.1 Usually once I get him drinking more he settles down. He needs to keep pushing those fluids. I am starting to feel the exhaustion. Whether it is from finally letting myself relax and feel it or if the middle of the night IV did it - not sure. 2:30am came too fast though. I heard the alarm and ignored it - dreaming it was the alarm for Chris to go to work. But then came the nudge and Chris saying "Ang? Do you have to get up for Owen's medicine?" Oh yeah - that's my alarm. So up I went got his first bag started. I caught up on the other caringbridge sites I read as I haven't really been following them this last week. Hung the second bag and read the book I am reading - "the Memory Keepers Daughter" - I am hooked on this it is really good. Finally the IV was done and got everything cleaned up and rolled into bed again at 4am.
Owen woke me at 7 - he needed help to get downstairs. I helped him down and returned to bed and slept until 8:30 when the alarm went off again to start his morning IV. It was a quiet day. We did some painting and coloring and then some puzzles. Played outside a bit and thats about all. Owen took a morning nap and mostly layed around. I told him tomorrow he needs to be up and about more - even if he doesn't want to come outside we can do some projects at the table.
I did go to my last night of golf tonight. Not the golf but the final dinner party. We had a steak dinner and Margaritta's and some great prizes. I got 4 margaritta glasses and some margaritta mix - guess I need to have a party! It was short and sweet - I was only there 1 1/2 hours - but that was perfect, I needed to get home for the night IV and was ready to get that done and hopefully fall asleep fast.
Tonight is the last of the 2:30am IV - I thought it went through thursday but when I counted the IV bags it will end with the 8:30 dose tomorrow night. Yeah for that! I just hope once he is off these antibiotics what ever was there before does not come back. Especially with the way he hovers on the brink of a fever. I am nervous of the unknown and not sure what to expect anymore. This last episode has certainly shaken me more than I care to admit. But as I was told 'Breathe, Breathe, Breathe!' I am trying to do that and take a day at a time here.
Have a good night and as always thanks for being there....
A
Tuesday, August 29, 2006 2:52 PM CDT
Oh we are home and it feels soooo good. Owen came out of his room yelling "I'm free - you can't catch me" and tried to run - now remember he is barely walking - little slow steps. He immediately fell. He was ok - just mostly scared. We left the hospital at 10:45 and had to stop for prescriptions and Peter's pizza and wings! We arrived home at 1:00.
Owen felt warm when we got here and his temp was 100.3!!! 100.4 is the magic call number. I could feel my energy drain and the look on Owen's face was devastation. We decided to wait a bit - maybe the ride home and time being up as I made the stops were too much for him. I took it about a half hour later and it was 99.5 - oh thankyou!!!
The nurse arrived with his IV pole and meds at 2:30 and we set up and hooked up his first dose of home meds. He has to have 2 different bags run - both the same med - it just doesn't come in the dosage he needs. Each bags runs about a half hour. He will need it at 8am, 2pm, 8pm and then 2am - that one is going to really stink!
I was suppose to be on vacation this week - of course it was suppose to be all fun - the fair and Niagara Falls, but I decided to stay home anyway. I need some definate home time and I am finally letting myself relax and am exhausted. It will feel good to be home. Plus with the meds every 6 hours it would have been alot of back and forth and juggling to go to work - especially after having to be up for 1 1/2 hours in the middle of the night.
Owen continues to be fever free. He is in a much better mood since being home! Just wish it was for more than a week. He will miss the first week of school due to starting his chemo back up and then the second week he will have dropped his counts and have a low immune system. So after the horror we just went through I don't think I will be risking sending him. I have to touch base with the school on what we need to do. I am not sure what but the next 24 weeks will be hard chemo and low counts so who knows how much he will attend and he definately will need some tutoring at home. 4th grade is a whole new ball game! Things are still up in the air right now as my husband and I discuss this. I am just so nervous after his system crashed so hard and NO ANSWER to why!
But for now we are just happy to be home! Thankyou for all your prayers for Owen and good wishes for our family we couldn't do this without you!
Have a good night!
Monday, August 28, 2006 11:53 AM CDT
We have 3 Toby Keith tickets for sales for tomorrow. I don't have them here with me but i believe they were row F under the roof, they were $47.00 each I think. Call me here 464-3692 or my mom at our house 252-1259 if you are interested.
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Looks like our release date is going to be tomorrow. They would like to perform another Echo on Owen to see how his heart is functioning now. They didn't do it earlier down in ICU due to him being on the heart meds. and steroids. These can all change the true results. Pending no issues he will be released tomorrow.
The home care person Sylvia will be up in a little while to train me on the IV at home. It is a little different than what I have done previously as this is an actual bag (2 of them) hanging from an IV pole. Previously I had a syringe that slowily got pushed into his hickman from the pump. They will also go over de-accessing him or I can have the home nurse come to the house on friday to take the needle out of his port.
Owen is up and down with his mood again today. He is either very chatty and sounds like Owen or he is very down and in the dumps. It is awful when he is so sad. No one seems to be able to break his barrier when it is up and it is very stressful. He barely talks, he just has his pout lip out, grunts and points or shrugs 'I don't know'. I am soooo hoping that going home will be the lifter upper. I have someone coming up later - the minister here - just to chat with him. If this doesn't seem to work and he remains down then when we come back next week for chemo he will see a therapist. I don't want him giving up on his fight.
This was a big week for him and I think he is angry about that. He missed his friend Thomas' party on Saturday. Tomorrow we were going to the Fair and the Toby Keith concert, and then wednesday leaving for Niagara falls for a couple days and to see his cousins from Vancouver. So a whole lot of fun that got washed away. I was suppose to be on vacation all week until next wednesday and I think we were all looking forward to the time off and fun. We will re-schedule and have fun somewhere later on.
I will update later if I get any news on the echo.
Sunday, August 27, 2006 3:53 PM CDT
So far today has been Owen's best day. He slept from 6:30 last night until 11pm and then was back asleep by midnight until 8am!!!! So I guess he needed that!
I had a much needed break and talked with my friend Lori for over 3 hours I think!!! Thanks for the chat, it was nice to just hang and talk!
Dr. Cherrick is on this weekend and she said Owen needed to be OUT of bed today and moving around as much as he could. They are looking to discharge us early this week - IF Owen is up and about and looking ready to go home. He will stay on IV Antibiotics through thursday night and then chemo will start Tuesday morning! Arghhhh - it seems so fast. She said his counts are back, and high enough to start now, so they are giving him time to build up more strength. So we are hoping to go home monday or tuesday to have a break.
Owen and I did some laps this morning and then sat in the Day Room where I read a mystery book to him. After about an hour he was ready to return to our room. Grandma Pat arrived shortly after. Then Erica Churney and her boyfriend Kevin stopped up. Owen seemed to perk right up for them. We went down to the playroom and started a game of Monopoly, but got moved to the dayroom due to it closing. Owen lasted another good hour or more playing. He always had a big grin when he was able to collect money.
Thanks for the visit!!!
Grandma Bonnie arrived during the game. We headed back to the room and Grandma had a gift for Owen - a small handheld video game with 75 games! That also brought a smile out. Thankyou Grandma! Owen said he likes to get the 'surprises', he is off steroids now so he doesn't need just food anymore! Although the way he eats I think the steroids are still in full affect. Daddy then showed up with a new GameCube game, Batman Begins. Thanks Daddy. More smiles.
So all in all it has been a good day. Owen is smiling, laughing and moving about alot more. Little baby steps but I think we are on our way back to seeing Owen again.
Have a good night!
Saturday, August 26, 2006 4:32 PM CDT
Today is the 3year Anniversary from when Owen was first diagnosed and the 5 year anniversary since my father in law died unexpectedly. How ironic that both of these heart wrenching days are the same. We have asked George to watch over Owen and protect him.
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Owen has had a pretty good day. He still is mostly quiet and doesn't talk much. He just wants to get home and I can't blame him. We all do but we need to know that he is up to going home. They did cut back his antibiotics and he is only on one now, the pentanamine for the PCP version of pneumonia. However with that they want him out of bed more and sitting up to allow movement in his lungs.
Papa W., Grandma Lee, and Grandma Pat all came up this morning. They had to wait 45 minutes in line to get into the hospital!!! There was only 1 guard working checking people in. Then unfortunately they saw a very quiet Owen. I think the only time Owen smirked was when Papa teased him about driving an hour, waiting in line an hour just to see Owen frown! Owen did get out of bed while they were here and we walked to the playroom to checkout his mailbox (they give a gift everyday to the kids here on the floor in their own mailbox). He also picked out some movies for later and then we made the treck back to the room. He is walking much better today. Once in the room I had him sit in the chair for awhile instead of bed. He got a very b loody nose while sitting there. It was just gushing out. His platelettes have gone up to 64 so he is not in need of a transfusion I pinched his nose for several minutes to get it to stop. He was very upset at the time it began as I told him that I was going to the zoo for a couple of hours while Daddy visited, to give Ty and Jake some more time.
Mrs. Vasquez (one of his multi-age teachers) and Daddy came up to visit next. Owen was ready to get back in bed then so we helped him up and into bed. Mrs. Vasquez brought some yummy Molasses cookies and a math War card game for Owen and a novel about a down syndrome child for me to read. Thankyou!!! How nice is that, Mrs. Vasquez has been one of Owens teachers for 4 years and we are sad to see all of them go... Owen is moving up to AJ, sure wish we could bring you along!!!! I am sure his next teachers are wonderful too, but we have definately had a nice relationship with the multiage group. Grandma Pat and I headed out with Jake and Tyler to the zoo for a few hours. Chris said that Owen actually perked up with Mrs. Vasquez and played the card game and was much better! See I knew you could do it Laura, you have the touch & and Owen can't remain grumpy with you!
My cousin Chris and son Ben came up later loaded up with Batman stuff for Owen. He has a batman blaster - it shoots a plunger type object, a batman action figure and some batman boxers and shirt! Thankyou! Ben used his own birthday money to cheer Owen up, how special is that! Chrissy also brought me some chinese dinner! Yum, cant' wait to eat that. Thankyou!!! Owen stayed pretty cheery and Ben and him played some video games.
A BIG basket of snacks arrived from Aunt Susie!!! So much for not munching so much!! Owen dove right into the cow-tales that were in there. They are our favorites! Thankyou Aunt Susie!!!
We had a nice day at the zoo, didn't get rained on. Ty was either good or very bad. Thank goodness mom came - I was going to try it alone with them. Jake likes to go slow and hang at the exhibits and Tyler likes to charge through and not wait. After we got to the penguin exhibit Tyler settled down and started to want to walk slower and not me hurrying off after him to the next exhibit. Sometimes I think he does it for attention and once he settles and realizes I AM sticking around he settles down and isn't in competition for my attention. Who knows.
We went to the gift shop and they each picked a rubber monkey and picked out a snake rbber for Owen.
The doctor says we might get out early this week, he will be sent home on IV antibiotic, which means they will leave his port site accessed with a needle and I will hook up the IV as I did with the hickman. He will need to stay on the antibiotic through friday most likely, and then after labor day we will be admitted for chemo if his counts are ready. Seems so scary, this next chemo is the one that hits Owen the hardest (Ara-C), so to hit him hard right after this incident is nerve racking. I have been asked why they will do this chemo and why so soon. But it is actually almost 2 weeks away and unfortunately leumkemia will not wait, you have to move forward as soon as possible for the highest chance of beating it.
I can't tell everyone how much the gifts, visits, messages, phone calls etc. mean. We are glad you are all helping us through our nightmare and we need all the support we can get. Thankyou for the bottom of our hearts!
Friday, August 25, 2006 8:03 PM CDT
Sorry for the late update - all is fine. I had gone home for the day to catch up with Ty and Jake so they remember they have a mom! We had fun, although there was alot of running involved. I didn't get home till 11, then at 1:30 we headed to Camilus for Ty's Doc appointment. They put him on an antibiotic for a sinus infection and are not quite sure on the diareahea side. Especially it is not consistant. Ty has it one day then goes 2 without and then it is back. So if this keeps happening even after being on the antibiotic they may culture him - especially since Owen's bacteria has never surfaced.
A WONDERFUL co-worker brought us dinner tonight! Some goolash, antipasto salad, bread and cupcakes for dessert! THANKYOU THANKYOU MARYANN!!! It was delicious and very much appreciated. I brought a bunch back up to the hospital with me too! She also got Owen a superman notepad, pencils and a silly fun pen with wiggly eyes. THAT even brought a smile from Owen he has been quite grumpy. Again we can't thankyou enough. (If you read this Maryann - i still won't let you watch my kids LOL):-)
Owen had another grumpy/ sad day. Mom saidd he perked up when Aunt Shelly, Uncle Pete and PJ came for a visit. He played some games with PJ, but tired quickly. Within a half hour or so he was ready to lay back down. Thanks for the pick-me-up PJ!!!
The docs are going to do some more testing on the fungus in his mouth. Yes it is still there after 2 weeks of fluconazol and now several days of 4 different types of antibiotics. Who knows - this could be the source!!! Owens legs are very swollen from the knees up but this is a result of all the fluid that was pushed into him monday night and will go away. He was also doing quite a bit of coughing this morning but that was a result of the Pentanamine (anti pneumonia med) that was going into him then. His counts are basically staying the same. He had a little bloody nose yesterday and again today. His platelettes are at 45 so they are low but not low enough for transfusion yet (20).
I arrived back at 6:30 to find him still quite grumpy. I did get him up and moving though. We headed down to the shower room. He is SO much stronger today. I helped him out of bed and then he walked the whole way to the shower with just a supporting hold from me. I did have to have the nurse help me both get him in and out of the tub. He was quite nervous in the tub so it was very short. He just felt really unstable. But hey a quick tub is still a tub in my book.
He is watching Batman now and I think we are about ready to call it a night. He said he was sad and grumpy today because he missed me. I told him I miss him too, but he had Grandma and then Daddy here today. I said you know you have 2 little brothers at home who also miss Mommy and sometimes I need to go be with them too. I told him I would never leave him if he were sick, but if he is doing okay - they need a hug and kiss from me too!
Tomorrow we are going to have a visit from my cousin Chris and her son Ben. I actually got a smile when I told Owen they would stop by.
So until tomorrow ... have a good night!
Thursday, August 24, 2006 9:45 AM
8:45 PM UPdate:
All is quiet. Owen has been quiet and sad today. He did have us bring him via wheelchair to the playroom where we got some arts and crafts. He didn't last long though and was ready to go back to our room. he tried to play some video games but this didn't last long either.
He is kind of lost. Glad to be out of ICU but really not feeling up to much of anything. It will take a few days I'm sure to keep building his strength up. He was picking his nails and pulled a hang nail off and yes started to bleed. I got very upset and told him he can NOT do this. That will open the door for infection and he is in too weak of a condition to have this happen. He needed to be very careful - we did NOT want to end up back in ICU!!! He started to cry and said he didn't want to die.... damn ... maybe I said it too hard - but I am scared to death of any issues he IS too weak to handle it. He seemed to settle down and was sad that his life was so miserable. So I had to remind him that yes he is having bad days, he has had alot of crummy days with leukemia, BUT he has ALOT of good days. I said all we have to do is look through our pictures of ALL the fun things we do, look at his house of all the fun things, think of his friends, family and on and on - he has many GOOD things. I am sorry he has bad things too, but he has alot more good than bad in his life.
Hopefully tomorrow will be a happier day. I will be leaving to go home later morning. I need to see my other boys. Tyler has been having a runny nose on /off and diahreaha so he will make a trip to the docs tomorrow. He had to go on hold unfortunately. But I am looking forward to seeing and spending some time with my other boys. Mom is going to come up and spend the day with Owen and I will return later tomorrow night.
I will wait till docs make rounds so I can find out where things go from here. I know we have to wait a few weeks to get back on track - Owen needs to get his strength back. We need to build him UP before we can knock him DOWN. How sad is that.....
Have a good night.
**** We are on 7H!!! I will update later. Phone is 464-3692 and her room is 7612 *****
Owen had a good day yesterday. He stayed out of bed and in the recliner chair for 5 hours! He is weak and had to be helped to stand and move but he looked great sitting up. He was talking more and was ready to eat. They moved his diet up from clear liquids to soft food so he had some tomato soup. He even had a bowel movement so that was a promising event too.
HIs 'wife' Brooke came to visit and his 'girlfriend' Barb too. Good thing not at the same time! He wasn't real chatty but they got little smiles and he was sure happy they had stopped in. Sue - the child life specialist - stopped by with some poker chips and Owen even played some Texas Hold 'em with her for a bit - he is up 45 cents in chips! He has quite the poker face.
About 3:00 he was ready to lay back down. He never did fall asleep though! So he was awake all day - much better than the 98 percent of sleep the day before. He was ready for more food and had some mac -n- cheese, and ice cream for desert. So far his body was tolerating it all. Later on he even had a bowl of Lucky Charms cereal!! Yes the steroids are still working and he is eating as much as he can possible handle!
They were unable to wean him from the Dopamine heart drip as his blood pressure was borderline normal so they would not be able to reduce it anymore for a while. He continues to stay awake and way even moving himself around in the bed to reposition himself instead of the nurses or me having to do it. So all great signs.
At 9:00pm they were able to reduce his blood pressure medicine. This would be the last reducing that they could do the next step would be to turn it all the way off. His Oxygen was at a bare minimum - but they wanted to leave it on until he was asleep and see if he needed it. He was restless at night and they ended up giving him a benedryl to help him relax and sleep. So at 1am I headed to bed. It was 8am when the doc came and got me from the sleeping lounge!!! I couldn't believe it!! I walked in this morning and EVERYTHING was off but the antibiotics!!! Oh happy dance he is on his own!
The cause???? No one knows yet and at this point it is not looking good for determing what it was. This is a reality sometimes that the source is not found, with him being Neutropenic it would not take much for a bacteria to do alot of damage to him - one that would not affect a normal child. So that is why when he is < 500 we don't go anywhere. Of course we didn't know he was low this time, and he might not have been and what ever bacteria he came in contact with might have crashed his counts. It is anyones guess. The antibiotics are working and clearing what he had so that is the main thing.
We will be going back up to 7H today now that Owen no longer requires a heart drip. From there we will find out more on how long he needs to be on an antibiotic, where is counts are now and what our roadmap will be from here. So I will be able to update later from our room on 7H. It will be nice to sleep in the same room as Owen and have a phone too!!! You feel quite isolated and cut off from everything in ICU - I have to 'schedule' out trips to use the phone, update the site, take a shower... so that will be nice to have our little home on 7H back.
I will type later - thankyou for all your prayers and words of hope - we appreciate them more than you know!!!!
Wednesday, August 23, 2006 10:44 AM CDT
Owen had a sleepy quiet day yesterday. They tried to wean him from one of his heart medicine (norepinephine) around 11am. Within a half hour his heart rate was dropping and they had to turn it back on. He actually laughed at TV a couple of times and definately kept his hand tight on the remote control so Daddy couldn't get it! But other than that he slept. They said it had nothing to do with his meds, but just his body had been through so much that he just needed rest.
The doc came in for quite a while and discussed things with us. I won't pretend to remember all that he said but will repeat what I know! The source of the infection has still not been found. Nothing had grown in the blood cultures - but remember it really only had been 24 hours at this point and the cultures can take 48 or more hours to grow something. Although it feels like we have been here a week already!!!!! Another area of suspicion is the lungs and a possibly a form of pneumonia call PCP. This is the pneumonia they treat him for once a month when he gets the breathing treatment for prevention. Today they will start giving him a once a day treatment for this to cover that area. They do not believe he has any heart damage!!!!! Between listening to him and the EKG done they have decided his heart is ok and does not need further Echo or ultrasound. The damage he has endured on his heart from the chemo - the tests done previously that showed him as a 'low' normal - is more for lng term. Owen will never be able to put alot of stress on his heart. ie. lifting weights , but normal day to day he is fine. So that was a huge relief. He still has the thrush in his mouth and this too could be the source of the infection. Bottom line is they still do not know and the scary part is may not end up identifying it as what ever the source is, it is now being treated as he is getting 4 different antibiotics to cover all areas.
Around 4pm they decreased the Norepinephrine to half dose and he tolerated that. So again at 8:30 they turned it completely off and he was able to tolerate that!!!! They also decreased his Oxygen level to 40 then 30 and now this morning it is at 10 and he is tolerating it. they tried to turn it off but he is not ready for that yet. They did replace the face mask with just the nose tube so he is much more comfortable and looks a lot less scary with that. It is hard to see him with all the tubes and monitors all over him.
This morning Owen got a sponge bath and actualy helped with moving himself around and helping wash. He has not been able to move at all before. He ate an italian ice and was sooooo happy to have that. He is still dying to have cereal but for today it is clear liquids, but it is wonderful that he wants to eat, that is a very good sign. We then got him out of bed! He is now sitting in a recliner chair but just being able to sit in a chair feels good. He needed the foot rest put up due to the IV in his foot. By keeping his foot dangling made the blood go to his foot and started throbbing.
He has to do 10 breathing exercises an hour. The blowing the little disk up the tube - I think everyone has had to do this at some point or another. But the great news is he has actually stayed awake quite a bit this morning and is talking a 'little' bit.
The plan from here is to contine to reduce the other heart medicien Dopamine. It is running at half the rate it was last night. Also to wean him completely from the oxygen. Once these two things are accomplished - should be today they will just monitor him for a while. If his system tolerates it - he should be moved to 7H tomorrow. I am in no hurry to get there. I would rather know all is well and when we get moved up to &h it is becasue he is truly readdy - and not have to do that emergency transport to PICU again - that was way to scary. They plan to do another Xray today of his chest to see if anything has shown up there. He is also going to get another couple days of steroids. Yesterday should have been his last, but due to the shock 'quitting' steroids can do to the system - they want to wean him off of them. So he will get smaller and smaller doses of this over the next couple days until they can remove him from them.
So things are looking brighter. Long ways from having Owen back but there is light showing in the tunnel now!
Thankyou for all your support and prayers.
We continue to have the support and help with Tyler and Jake and appreciate it all - these two kind of get left in the dust in these times and I am so grateful for everyone who jumps in to help here. The boys are wonderful in that they are very 'portable' and happy to go anywhere so that is a blessing. I do worry about them and how much affect the disappearing Mommy has on them as well. Once Owen is more stable and on 7H I will get home to have some time with them.
Thanks for checking on us!!!!
Tuesday, August 22, 2006 9:51 AM
Where do I start?
Owen is in Pediatric ICU at University. He has some sort of Bacterial infection - it has not been identified yet. He is stable now and looks 100 percent better than yesterday. He just finished eating some ice chips. He has been moved into an isolation room due to being neutropenic- his ANC is only 280. He is happy now as this room has a TV! He is actually awake and semi-alert today and is talking.
What got us here? Yesterday morning Owen woke up in hysterics crying in pain that he hurt all over. That he never felt like this before and he needed to go to the hospital. I got him calmed down and he told me his chest, back, stomach everything was hurting. I called the doc, he thought it was due to the Vincristine that he just finished the fourth round of. I told him that Owen gets joint pain from this but this morning was different he was just sobbing in pain! He wanted me to give him a pain medicine and let him rest awhile and see how he felt. Well Owen fell sound asleep. At 10:30 he got up but just wanted a benedryl for his tummy being upset, and went right back to sleep. At noon I said we needed to get him up and get him in for his bloodwork. He complained of not feeling good and that his chest hurt at the hospital while we waited for his blood work. I put another call into the doc and left a message that he just wasn't right, he was aching and chest hurt and something was wrong. He still had no fever but he just wasn't right. I had not heard back from the doc/nurse yet when at 2:30 he spiked a fever - 103.2!!!!! I put a STAT call into the doc office and they wanted up to come right over. Owen was very sleepy and just out of it. He was still talking and walking so we went right up to 7H. Here they drew blood cultures and got him started on some fluids. They ordered an xray for the cough he had, and his Oxygen stat was only 85. So they put him on Oxygen. He was doing okay, his blood pressure was real low only 74/29 so they were watching it.
Then all hell broke loose. His pressure started dropping - his heart rate was very high 150 and his oxygen had to be turned way up. Next thing I knew there were about 10 people in the room all checking him, doing something. They were pushing fluids into his body quickly to help his heart rate. The fluids weren't helping though. His blood pressure would begin to come up and then drop right back down. They needed to get him it ICU to treat him better. At this point I am a basket case. I called mom and managed to breath out the words 'get a sitter'. That was all she needed.
We headed to ICU and I was not allowed in while they got him set up and stablized. I was totally loosing it in the waiting room. I had managed to call dad, bonnie and ron (My inlaws). I was unable to find Chris. He wasn't answereing his cell and I didn't have Murphys cell or home number with me. Ron called around and Marc Murphys wife was able to track Chris down. THANKYOU THANKYOU EVERYONE!!!
They came out to get me and it was just a flurry of activity . They started Owen on dopamine a heart medicine and were taking his blood pressure every 5 minutes. They were also pushing the fluids into his IV but at a slower rate as they didn't want to over saturate him. Poor thing he had his port accessed and an IV in his foot and one in his hand to handle all the meds going in.
Chris, Mom, Dad and Leanne, Bonnie, Shelly, Kim, Nic all all started arriving one by one. Thankgod I needed someone. Owen's oxygen stat started to fall again. We tried tipping his neck back to get the oxygen in better. He was very lethargic now and when pressing his toes it took over 5 seconds for the color to come back - it should only take a second. His feet were freezing. They started to get a ventilator ready to insert as he was failing. Oh if I could only explain the terror ripping through me. Somehow he started to breath ok again and the stats were coming up. They were going to hold off for now. His stats kind of stayed around 92, but after sometime of having his head tilted back his neck really started to hurt. He was going up the pain scale 8, 10, 11 ( wait Owie their is now 11!) They didn't want to give him pain meds as they needed him to breathe normal and the pain meds might make him slow his breathing. We did adjust his neck again, and his stats actually went up to 95 now... i think he was working too hard with the pain.
And so our night went, but Owen finally remained more stable starting around 11, but the numbers were still low but remaining at an ok level.... At 1 the nurse suggested we get some sleep as Owen would NEED us tomorrow as well. Chris headed home, I went to the waiting room to sleep (there is no bedside sleeping in ICU) and mom remained with Owen. Kim and Nic went to moms house to pick up Ty and Jake who Aunt Judy and my cousin Pam were wonderful for watching. Again thankyou everyone for jumping in and helping wehn we sooo need you all!!!!
I managed to fall asleep and at 2:30 had the nurse and mom looking me in the face to wake me up. I nearly jumped out of my skin!! But all was ok - he was stable still. They just neede to give him some blood his hemoglobin was only 10 and thought this might help his heart not work as hard. They needed to know if he needed any pre-meds for blood. Ok Breathe breathe he is ok. I dozed back off and woke at 5. Mom went home at this point. Owen's heart rate, blood pressure and oxygen level were all normal now!!!!
The docs made their rounds at 9:30 and were VERY happy with the turn around last night, they were expecting a much harder battle. That's my superhero Owen, always amazing. They will start to wean him from the two heart meds today and if he tolerates it he can move out of ICU back to 7H. This probably won't happen until late today but most probable sometime tomorrow.
So back to the present. As I said he is awake today and talking. He says he has no pain right now. He does hope they will let him eat something later! He is thinking about strawberry icecream. Oh how my heart leaps with joy to see him looking at me and talking. He was so out of it last night. It is just a miracle!!!!!! The cultures will take upto 48 hours to show and bacteria. They know his heart is at a reduced function due to the chemos he has gotten so any bacteria infection could ultimately make his heart work harder. So what does this mean for the future??? Not sure but I have questions once my head gets cleared and I am able to start thinking again.
I will try and update later. I have to come up to 7H to use the computer. Please pray for Owen he still has some hills to climb.
Saturday, August 19, 2006 7:22 PM CDT
Our roller coaster is going back up. Owen has had some good days here. Friday started out the same. Mostly just grunts and being miserable. He went to religion but slept through a lot of it. He came home and slept on and off most of the day and was grumpy most of the time. Baby Donovan Site
Thursday, August 17, 2006 8:44 PM CDT Owen is such a roller coaster of emotions! Wednesday he had a great day. I stopped by religion to give him his steroid pill - I had to get another 7 days filled, as the original presciption was only for 21 days. He was smiling and happy. He had gotten up in front of his class that day to talk all about himself and his illness. He seemed very proud of that and wanted the kids to know why he was 'different'. After religion he went to the Walawenders with a couple other kids and had a fun day of playing. Tuesday, August 15, 2006 8:17 PM CDT Owens day started out rough. He wouldn't even talk - he was just grunting at me. Then the grunts got louder but he still wouldn't talk. I KNEW exactly what he wanted - breakfast- but I refused to give in to his attitude. FINALLY the words came "Mommy can I please have eggs and toast" Yes Owen you can - thankyou for asking nicely!
Sunday, August 13, 2006 7:13 AM CDT The family golf/ reunion went over great and fun for all. The day started with a four person Capt-n-crew at Indian Head. Now there are no raging pros in the family but there sure is alot of fun happening on the course. The jamming girls - complete with dance tunes even managed to get an eagle on #6! Now they were just 'a little excited'!
Friday, August 11, 2006 7:12 PM CDT Owen had a crummy day. He was just really hurting today. Early this afternoon Mom called me at work because Owen had not moved off the couch all day and was now in extreme tears with the pain. I talked to him and finally got through sobs that his legs, back and head hurt the most, the site of his operation just hurt a little. Mom checked the site and it was not red so chances were it was ok. I was thinking it was probably the Vincristine chemo because that causes the joing pain, and this was his third week of it so it might really start effecting him. Mom had given him a Tylenol w/ codeine about 30 minutes prior to calling me.
Thursday, August 10, 2006 7:32 PM CDT Owen had a quiet day today. He is very sore from the surgery and kind of walks very stiff so not to move his left side. He is taking his pain medicine (tylenol w/ codeine) every 6 hours pretty much. He is still eating lots though so it isn't effecting that! But otherwise he is in pretty good spirits, except when the pain starts up. He is still having very restless nights, our NP Zarina told us it was due to the steroids. They will let him sleep but for a couple hours at a time, which is about exactly what he does. Hopefully this will level out soon too. I think it just takes his body time to adjust to the drug and he is going through phases with it. At least the mood swings are very minimal now, I think we were all losing it over them!!!
Wednesday, August 9, 2006 10:00 AM CDT Surgery went well. It was a long haul for Owen without eating. He wouldn't really talk to anyone he was too sad and hungry. We got there at 12:30 and he headed into surgery around 2:15. The surgery took about an hour. The surgeon said it went well. He said Owen's tissue was very soft but he didn't think that was any issue - it is probably due to the steroids he is on. I went back to recovery around 4 and Owen was half awake. The nurse from clinic came down and ran his chemo which only took around 15 minutes. His port worked like a charm! They got Owen some Tylenol with codeine for the pain and wanted us to wait another 30-40 minutes to let that take effect before we left. Owen kept moaning like he was in pain and the nurse and I kept asking him what was wrong... finally he talked! He had to go to the bathroom. And that he did - what a camel - after all that IV fluid going in he must have gone for 10 minutes before he was relieved!!! What a look of relief after! At 5:30 we were on our way and Owen was finally coming alive and talking. First stop - McDonalds for a 10 pack of chicken nuggets! We stopped at Walmart on our way home to fill his tylenol/codeine prescription and also the EMLA cream for next week to numb his new site for access. I let him get a new Xbox came for being such a trooper today. He has a bandage on the site that has to remain until Saturday and then it can come off and he can have a shower - sponge baths until then. The steri strips over the incisions will fall off in the next week or two on his own. He can't swim for 2 weeks - so that is ok, he'll be right in shape to go to Canada with his cousins and swimming by then! We are off to bed - we are all exhausted for the day. After Owen had 2 more meals here at home - catching up from the day. LOL
Monday, August 7, 2006 9:10 PM CDT We had a little bit of a scare yesterday. We packed everyone up to go out on the boat. Owen was whining it was too hot to go on the boat and he didn't want to go. (He wanted to sit in the house and play toon town on the computer) Nope we are having family day and all you kids are going and you are going to like it!!! LOL
Saturday, August 5, 2006 9:03 PM CDT We survived the pennefeather - barely - but we golfed very bad. We were 8 over and lost for the first time in quite a few years. But as we said - we had fun - and we looked GOOD! We went to the bar Friends after the tournament and rode the bull! We just had to - the night wouldn't have been complete without it.
Friday, August 4, 2006 6:06 AM CDT All is going well. Owen is adjusting a 'little' better to the steroids and his bad moods are decreasing but still exist. He went with his friend Sean to Syracuse on wednesday to hang at Sean's grandmothers house and pool. He had a great time and maybe just what he needed to perk up his awful moods. He didn't get home until 10pm!!! I teased him when he came in - 'Who do you think you are staying out past curfew till 10 when you are 9 years old!' He was giggling and in a great mood, great to see!!!
Wednesday, August 2, 2006 5:52 AM CDT Owen had a good day at clinic. We arrived at 12:45, and got checked in and weighed. Owen has only gained 1 pound so far. They but the Emla cream on Owens hand to let that work for numming his hands for the poke for his chemo inserts. They do both hands in case they are unable to get the access on one the other will already be numb as it takes a good 40 minutes or so for the cream to work. Owen went in for his checkup and was a little grumpy. Zarina got mostly grunts at first from him. His hair is definately falling out and it is from the Vincristine chemo he is receiving now. He also has thrush in his mouth. It is a white bacteria inside his cheeks and on his tongue, similar to what some babies get. This also is caused from the Vincristine. So Owen is now on Fluconizal an antibiotic for that. Zarina wants Owen to gain some weight. I told her we are all anxious for him to starting eating from the steroids and get off the emotional rollercoaster he is on!!! His next phase of the treatment is very intense and he needs some extra weight to allow for this phase. He will start with Ara-C a very high dose nasty chemo (inpatient) , 2 weeks off, then spinal tap/ bone marrow w/ chemo, Methotrexate chemo (inpatient), then finally Etophous & cyclophospamide these 6 weeks will be repeated 4 times for a total of 24 weeks. Due to how Owen has responded to chemo so far the chances are we will have many delays within these 24 weeks. But it will be hard on him and he may shut down on eating, thus the need to beef him up now.
Tuesday, August 1, 2006 5:37 AM CDT Jakes birthday was a huge success! He didn't stop beaming from ear to ear all day. He drove me crazy from the minute his feet hit the floor at 7:30. He wanted his cake, he wanted to open 'just one' present pleeaase', where was everyone - why weren't they here yet. Finally the Jurassic park jumping house arrived at noon - yeah!!! He was thrilled and jumped from then until the party began at 2. He was in and out of it all day - I don't know where he gets his energy from! Tyler was his buddy all day. He switched between the jumping house and swimming. Jake had his buddy Connor here and his cousins. He was a trip and a half at present time. The expressions of joy were wonderful. He got dinosaurs, dinosaurs and more dinosaurs!!!! It was a dream come true for him. He also got a dinosaur village - which he went crazy over. He had a King Kong and dinosaur cake, with ice cream volcanos. Just a great day for him all the way around.
Saturday, July 29, 2006 5:55 AM CDT All is going well. Owens joint pain is pretty much gone - unless he needs to do something (ie. practice his cursive). His mood swings are horrible from the steroids. He is either happy or crying or just down right miserable! So far the food cravings haven't been too bad. He was craving double cheeseburgers from McDonalds thursday. At first I said no - that we could just cook hamburgs at home... wrong thing to say to Steroid Boy! He was so upset you couldn't even understand what he was saying... so Chris packed him and Ty up and ran to McDonalds while I took Champ to the Vet. Jake was having a special sleepover at Papa Freds and Grandma Leas for his birthday. Champ made out ok. She believes the 'wart' on his head is actually a bug bite of some sort. He is on benedryl and I have to clean it 3 times a time with peroxide. She will check it again on Wednesday. She would like to x-ray his front leg if he continues to limp alot - he chases bugs all day long!!! And then his he is sore. He could be putting too much stress on that joint with his constant jumping and landing on it. She said she could do it the same time she neuters him... hint.. hint.. I still have not convinced Chris that this needs to be done. He feels we may breed him at some point, because his friend has a female boxer... but we still have no papers from the original people we got him from & I have never worried about it as breeding is not anything I care about. So we'll see...
Wednesday, July 26, 2006 8:50 PM CDT Ahhhh - Steroids - its a 'wonderful' thing. Owen has been whining and crying ALL DAY!!! It is amazing how fast they start having effect. He has already doubled his eating and quadrupled the mood swings! The home page picture is skinny Owen, I will post pictures of the before and after at the end of this 21 days. How many more do we have to go... oh yeah 20, its going to be a looooon 3 weeks!
Tuesday, July 25, 2006 8:38 PM CDT All went well today. They put Numming cream on his hand for the needle poke and did Owen's check up. Owen had quite the giggles during his checkup. Although they ended quickly when it was time to go into the treatment room for the needle insert. We got out one of the I Spy books and got to work looking for things to take his mind off the poke. His veins weren't cooperating on poking out so Melissa did a little "drum-roll" on his hand and boom out they came. So we all got a chuckle on how she had to beat the patient to work on him. This got Owen laughing too. The Vincristine was pushed in over about a minute and the Daunorubicin was pushed in over about 15 minutes. Owen worked hard on the I Spy the whole time. They gave him "The I Spy Award" sheet because he was the best one they have ever seem do it - he was whipping through the pages.
Monday, July 24, 2006 7:22 PM CDT Quick Update - I keep forgetting to post this: Owen's Bone Marrow results are clean! This is wonderful - I still fear everytime that either the ugly AML will appear of some blasts from his testicles will appear - but he is clean clean clean!!!!
Saturday, July 22, 2006 1:14 PM CDT Not much to report, all is quiet, which is a good thing! Owen went to Mom's yesterday to spend the night. The rented some movies and had a quiet night. Tyler, Jake and I went to syracuse to our cousins birthday party. The boys had fun - Tyler went swimming alot, but Jake stayed away - too many kids for him. He found the dinosaur supply in the play room and had a ball. It was nice to sit and relax and visit with my family. We got home around 9:00 and the boys played outside for a bit before bed.
Thursday, July 20, 2006 9:24 PM CDT All is fine here at home. Owen's chest is healing very nicely. He is on a very strong antibiotic - thats a story in itself. The pharmacy wouldn't fill the prescription since he was under 18, so we had to page the resident who filled it and finally tracked her down - she called the pharmacy and made them understand WHY he needed it. Then they didn't have the ointment he needed for his chest so I had to wait and pick that up today. Owen was already BORED today with not being able to do anything. This could be some long days until we reach monday and find out his status! Tomorrow we have a birthday party for our cousin Brett - but mean mommy is not letting Owen go. He is going to spend a special night with Grandma Pat and I will take the other two. I did tell him I will let him stop in at his baseball picnic on Saturday for a bit - but no playing on the playground.
Wednesday, July 19, 2006 11:20 AM CDT
Tuesday, July 18, 2006 1:37 PM CDT Well we discussed it over and over again with the doctors, nurses, other kids who had the port etc. We decided that it was the best move to take out his hickman line.
Monday, July 17, 2006 9:18 AM CDT 7:00 PM update
Friday, July 14, 2006 10:16 AM CDT Friday 11:30 - Off to the hospital - Owen needs a blood transfusion.
Tuesday, July 11, 2006 7:55 PM CDT Things are good here. Yesterday we went to hoopes park to feed the ducks with lots of old bread in hand but the ducks were not very hungry! We tried for a while and then gave up and just went to the Herman Ave playground for a bit. At home Jake, Tyler and I flew a kite - it was a great night for it. The kite was going really high but then the wind would pause and it would come diving towards the ground much to Ty and Jakes delight - then whoosh right back up.
Sunday, July 9, 2006 8:23 PM CDT Owen went fishing with Daddy and Papa W. around 8am yesterday morning. He lasted until 11 - and then it was just gettting too hot. So he went to shore and relaxed with Grandma Lee.
Friday, July 7, 2006 9:16 PM CDT Well it has been a few days but all is well. We have had some much needed quiet days. Owens chest continues to heal. I think we made a wise choice in keeping the bandage off. It is drying up and looking like it is healing. He had a nice soak last night. He was panicing galore on getting in the tub for cleaning but once he got in there I worked on getting the old tape marks scrubbed off and then used a squirt bottle to repeatedly soak his sores. He finally relaxed and said it felt really good and we got it pretty clean. I continue to put the silvadene cream on it and I think it is going to start healing pretty quickly now.
Wednesday, July 5, 2006 7:47 PM CDT All things are good. We went to the parade yesterday. The kids loved it - except the loud sirens - Tyler ran up to the garage and hid and came back down when all was quiet again. Owen gave all his collected candy to some of the younger kids - what a sweetie!
Tuesday, July 4, 2006 8:28 AM CDT We had a beautiful day! I had to work today, but Chris didn't so he ran around and got the boat all registered and set to go and took it for a test run so we could be sure it was sea-worthy for the fireworks tonight. I left work at 4 and came home and packed up the boys with warm clothes for the boat later.
Sunday, July 2, 2006 9:04 PM CDT Where do I start the day? It STARTED out normal. We were getting ready for Tylers big party, I was making salads, snacks, cleaning the house... all is good. Chris put together Tylers new Escalade car and then mowing the lawn. About noon - Owen yells to me "Mom!!! come look at my chest" Now his skin has been irrated due to changing his bandage so much because he is swimming. He wears a Tegaderm bandage which is a very sticky clear bandage over his hickman. It is designed to stay on a week at a time and allows him to shower and not have to change his bandage. But with swimming they were having me change it daily. The last time he went swimming earlier this week - his skin was getting red and really burned when I cleaned it. So we thought... well this is good we are going in the hospital and he will have several days off from swimming and changing the bandage. Well it was getting redder under the new bandage. I talked to the NP and we thought that Owen should switch to the coverderm bandage which is cloth and will come off much easier after swimming and won't irritate him as much. Well back to the scream - I look at the area under the bandage (it is clear) and he has blisters galore under it. So I have Owen get in the shower to try and loosen the bandage up some. After his shower while pulling off the bandage - most of the skin and blisters peeled with it! OUCH!!! The blisters were oozing like crazy. I called the doctor. He asked what his counts were and I didn't know - we didn't get them before we left on friday. He looked up in the computer and nope there were none done that day - which is normal they are just checking for the methotrexate levels. He has me take Owens temp and it is 100.5 so he figures we better come in and have his counts checked and let him look at the skin. So off we go at 1:00 for the hospital.
Saturday, July 1, 2006 8:01 PM CDT Happy Birthday Tyler!!! Ty hit the big 7 today. He was so proud and just grinned ear to ear when you sang Happy Birthday to him. Tomorrow is the big family party for him. Today would have been a beautiful day to have had the party but who knew we would be home! But the cake is here and he is beside himself wanting to dig into it!
Friday, June 30, 2006 5:14 PM 6:30pm - we are going home!!! Owen slipped by with a .19 yeah!!! Of course one thing I forgot about is they did lower his dosage on the methotrexate due to the number of times his chemo has been delayed. So they may have been the kicker in us getting out a little bit earlier. Well I can't chat I have to pack and run!
Thursday, June 29, 2006 7:09 PM CDT So far so good very uneventful.
Wednesday, June 28, 2006 2:36 PM CDT Owen passed his counts yeah!!!!
Tuesday, June 27, 2006 6:22 PM CDT Thomas came over last night to spend the night so Owen had a fun night. They even went swimming for quite awhile last night and then again today. They were actually asleep at a decent hour and were still sleeping when I left this morning. We had told Owen he was free to have a friend but no over doing it we want to get back on schedule!!!
Monday, June 26, 2006 5:35 PM CDT Oh where to begin in just another day at the Wawrzaszek house! Yesterday started out normal. I was up first and puttered and cleaned the house - the rest of the household gradually stirred and then the normal stuff. Chris and I were golfing with Dad and Leanne in a golf tournament, Sam arrived at noon to babysit and we were off. So far so good.... Golf didn't even start out bad - we were par and birdies. I think we were 1 under after 9 which isn't great for Capt -n- Crew but wasn't bad we were happy. Then the second 9 - way too many bogies happening.
Saturday, June 24, 2006 8:19 PM CDT Well the sleep over at camp was a bust. Owen arrived home around 11:30 - he said his belly was hurting. So he took a benedryl and snuggled down for the night at home. I think part of it was nerves - sleeping at a friends is one thing - sleeping outside in a tent for the first time is a new experience.
Thursday, June 22, 2006 5:30 PM A big double ARGHHHHHHH today!
Tuesday, June 20, 2006 7:54 PM CDT Owen seems to be doing fine. It is hard to believe his counts are low. He was suppose to have a game tonight but he is house bound until his counts come up - no reason to risk getting any infections. So hopefully Thursday will see us back on schedule!
Monday, June 19, 2006 3:33 PM CDT Happy Be-lated fathers day to all the wonderful Dads and Grandpas out there!!!
Saturday, June 17, 2006 7:51 AM Its been a few days but all is well. Owen is almost finished with school - his last day will be Monday as we will go inpatient for his last round of Methotrexate (well at least for a while) starts. Owen had his picnic lunch on Wednesday and I joined him - he paid for me to come with his own money!!! How sweet was that? We had lunch and then the kids played outside for a while before heading back home or back to class. Owen left with Samantha to go play at her house. The condition was he had to bring home homework in order to leave early & I wouldn't be home (sanity golf night) so he had to do it on his own without me there to nag him. All went well though - no problem at all!
Wednesday, June 14, 2006 5:13 AM CDT It was a good day - but a long day. It started out with me doing a blood draw for Owen and dropping it at the lab. Then off to work. At 9:00 Mom called... the hospital had called and Owens hemoglobin was low, he needed a red blood transfusion. They wanted us there as soon as we could get there. So Mom headed off to school to pick Owen up. So he had barely rolled off the bus and she was there to grab him. She dropped him off to me and we headed out. We arrived at the hospital at 10:30. An old friend was there Tracy McLoud. His daughter Ashley was diagnosed with cancer back when she was around Owen's age. She just finished graduating from College!!! She still has to come for yearly checkups - I didn't realize they followed you for life. But I guess once you have had cancer you are at a higher risk to develop other cancers later on so they will always check you. It was great seeing him and wonderful news on how well Ashley has done.
Monday, June 12, 2006 9:16 PM All is well - we have finally warmed up and have dried out from the wet weekend excursion! Sunday Owen and I went to a benefit for Tony Suslik. Tony was able to attend the benefit for a while - all good!!!! Owen loves to go to benefits - he still wishes he could have gone to one of his... but one day he will have a BIG party to celebrate his health! Owen was a big winner. He won both a Bass Pro gift package with a fishing pole and a 'rainy day' gift package with movies. He was thrilled.
Saturday, June 10, 2006 11:08 AM CDT The Relay for Life was a HUGE success. The goal was to raise $50,000 and as of this morning the total was $78,000!!!! It is too bad it was such a bummer of a night and day. How did the mighter campers Owen and me make out??? Just fine - stayed very dry in our sleeping bags - of course we were sleeping in them in the middle of our living room! It was just way to cold and damp to stay the night, I didn't even want to do it in the van. I don't need Owen to get sick at this point. We did stay until 10:00. Owen spent most of his time in a tent with some of the other kids so he was nice and dry and said he was actually very warm.
Thursday, June 8, 2006 8:19 PM CDT Owen had a good day and went to school. Tonight was a busy night getting packed and ready for the big camping night tomorrow! Boy camping is alot of work!!!! It is just me and Owen and between the snacks, sleeping bags, tents, chairs, flashlight, games... oh my it will take me the whole night to get settled in! Owen is very excited about it - he even wants to do the drag-queen relay at 2:30. Will we be awake????? I hope it is not a wash out with the weather that will really be a downer. We are bringing a tent but then are also going to have a blow up mattress for the back of the van - just in case it does get to damp and miserable we can sleep in comfort! The only thing with that is that we will be in the parking lot and not down with all the activities.
Wednesday, June 7, 2006 8:24 PM CDT Today started out rough. Owen was up at 5:30 throwing up. He threw up twice then went back to bed. He was back in the bathroom at 7:00, and then back to bed and right back asleep. Grandma Pat woke him up at 8:30 to take Jake to school, and then to her house. She said he just laid around and said his tummy didn't feel too good. But by the time they had to go get Jake at 11:15 he was feeling fine. Mom thought he probably could have gone to school at that point - but didn't want to push him. Turns out she should have! He was fine the rest of the day and normal Owen and full of it.
Tuesday, June 6, 2006 8:35 PM CDT Today went well. We were on the road at 7am - to Cato to my doctor for a B12 shot and a blood draw. Then off to Syracuse. We had time before they got us started to play a game of Lego's - it is a game were you have to build some sort of car,plane, boat etc. by landing on spaces and getting to take X number of pieces - first one to build wins! Owen loves this game and usually we don't have time to finish it.
Monday, June 5, 2006 10:01 PM Hi all! Quick update as I am off to change Owens bandage and it is late.
Sunday, June 4, 2006 8:33 AM Things are going well. Owen is a little hoarse and still coughing. The NP sais she is going to have a pulmonary tests done - just because he is coughing. He lungs don't sound bad - but not clear. She thinks it could even be some damage - even after all this time - from the BM transplant! He always seems to get a little worse after having had chemo.
Friday, June 2, 2006 7:29 AM CDT We are home! We were released around 1:00. Owens level was at .09 So beats me on this up and down thing! But that is why they keep him until his level is correct to make sure the chemo is really flushed out. Owen had to then get a breathing treatment. He sits in this big oxygen tent and has a tube he breathes on containing Pentanimine (sp?) this helps to prevent pneumonia. Previously he took Bactrim 3 days a week 2 Xday in pill. But since he has been delayed twice in starting chemo due to low counts and the Bactrim can cause this - they are switching him to this 1 x month treatment instead. He will get this on one of his office visits. Owens says it tastes awful and he would rather take the bactrim! He has one more dose of the 'rescue drug' to take today at 4 to keep the chemo level down and then has to take a chemo pill MP6 tonight and the next 2 nights. Next week he gets 2 different chemos at the office and then the following week is free!!!!
Thursday, June 1, 2006 3:35 PM CDT Owen was the talk of the floor yesterday. They couldn't get over what a great mood he was in. He had nicknames for everyone. They played American Idol, were racing etc. I am still hearing stories of what happened while I was gone. Well at 7:00 Owen came in just to rest a bit - and was sound asleep at 7:30. He slept until 11, then was up for an hour and fell back asleep until 8 this morning.
Wednesday, May 31, 2006 4:02 PM CDT What a whirlwind of a day. Owen has been just an entertainer all day!!! He woke up in a great mood and after his shower has been non-stop. He has been playing games with the Child Life Volunteers on the floor and then the rest of the day he has just been playing big brother and entertainer to Mira a 2 year old little girl here. She absolutely is thrilled to have Owen. She tends to not be very happy when she is here - she is afraid of the docs and all the procedures but is getting better. But today has been great.
Tuesday, May 30, 2006 5:24 PM CDT We have settled into our 'townhouse' for the week. We are in room 7611 and the phone number is 464-3689. I have also posted it at the bottom of the web page. Things are going great. Owen was just full of it this morning!!! He was bouncing off the walls. He settled right in to jamming some Toby Keith in the playroom before I even went to get our things from the car. When I returned he was already setting up the game of life to play with a student nurse. Then him and our roommate Andrew played Jaws on PS2. Mary Ellen the tutor showed up and they both scooted off with her.
Monday, May 29, 2006 8:16 AM What an awesome day we had yesterday. Owen started out the day by going hunting with Uncle Steve. I woke him up at 6:45 to protests - "One more minute...just one more minute" The knock came at the door Uncle Steve was here - boom he was up and ready no more being tired! They were home by 10. Owen said their spot kind of got ruined. I asked why and he said "Well.. I was getting cold so Uncle Steve went to the truck to get me another coat...and then I heard these noises.. I thought it was a coyote.. so I started screaming and ran to Uncle Steve" Yeah that might scare off any turkeys hanging about. Steve was laughing.. yeah he booked alright left his gun and all. The mighty hunter still has some learning to do I think.
Saturday, May 27, 2006 8:08 PM CDT The IV last night went a little bit sour. Owen started really itching near the end. I grabbed him a benedryl but I think it was too late. So there was only about 5 minutes left so I just turned it off. I went to flush the line which I usually do from the end of the IV tube that is attached to the pump. So that pushed the Vancomycin that was in the tube into him - he started screaming that it was burning and he went into an itching frenzy! Finally the burning and itching went away - thankfully! So today BEFORE we started the Vanco I gave him a benedryl and he didn't have any itching. When it finished I just flushed his lines like normal - no flushing the remaining Vanco in the line into him and all went well!!!
Friday, May 26, 2006 6:22 PM We are home again! Owen had to have new blood draws taken off of both of his lines, and a regular peripheral blood draw (in his vein) to determine if it is his line that is infected or in his body. He was a little spooked to get his vein poked but did it like a champ. I just read a book to him to take his mind off of it. He was quite tense and the nurse told him to take a big breath to relax and boom out came the blood. Then they set us up in the TV room to get Vancomycin antibiotic through IV. Since Owen is sensitive to this he has to get it over 2 hours VS the normal 1 hour. So we settled in and watch The Parent Trap with Lindsey Loham. It was a really cute movie - same old thing like the original but cute anyways. We finished the antibiotic just before the end so hung out to watch the end. Then the nurses came in and sang Happy Birthday to Owen and gave him a disposable camera and the new Bop IT extreme 2 game!!! Thankyou!!!
Thursday, May 25, 2006 10:38 AM CDT Quick update (friday morning). Owen did well through the night. His temp went up and down, but never went higher than 100.5 So he certainly is fighting something but hopefully the antibiotic is enough to get him through this.
Tuesday, May 23, 2006 5:56 PM CDT Owen learned the meaning of a low immune system today. He thought being too low to go to school meant he couldn't do homework because he was 'tired'. Of course he wanted to play video games! Grandma had to fight with him - through tears and how tired he was to get anything out of him and it was very little. He said he could explain to Mom when I got home why he couldn't do homework. Well MOM didn't buy it. Being low on counts only meant I didn't want to risk him picking up a virus at school - since here we are the end of May FREEZING!!! BUT if he was up to playing games he was up to homework, AND if he couldn't do homework there was no sense in getting the new Jaws game being released tomorrow since he would be too tired to play it. HMMMM - did I strike a sensitive area... I think so as he was able to do homework. I also set aside what he has to complete BEFORE they get the game tomorrow.
Monday, May 22, 2006 6:35 PM CDT The blood draw went smoothly after a rough start. The nurse brought with her the supplies from the home care company to supervise my first blood draw. Well there was alot of supplies missing - no empty syringes for the actual blood draw, no sharp container for the needle that inserts the blood into the blood tubes, no labels for the tubes. So thankfully she had these supplies in her car. If she had not come to supervise I would have had to go to the hospital to have had it done! So after that things went well. Owen of course slept through the whole process at 6:30am.
Sunday, May 21, 2006 9:20 AM CDT Its been a busy busy weekend thus no time for updates. But a good busy! Friday was Owen's late night at school. The kids all stayed after school and played games, had pizza and snacks and hung out until movie time. They took a bus to the Movie Plex theatre to watch 'Over The Hedge'. Owen said it was a great movie. He then rode home with a friend as he was now joining in to a birthday party that he was invited to that also was at the movies, but he had wanted to do his class party. They went off to Reesee's for icecream. Owen arrived home at 9:30 to take his bactrim and pick up his sleeping bag to spend the night. He was very happy and having a great time. Someone had told him Batman didn't exist - but he KNOWS he does as he came to the hospital to see him!
Thursday, May 18, 2006 10:30 PM YEAH - Owen's bone marrow test is negative! No traces of any leukemia. I know there has not been any traces at all even when he first relapsed - but this is the test to determine that the leukemia is not spreading - and therefore the ability to conclude that he is staying in remission and the cancer in his testicle is not still growing. Very good news to hear!!!!
Wednesday, May 17, 2006 8:44 PM CDT Owen was still stiff and sore today, but much better. He went to school today only for a Cancer presentation being put on for the students by University Hospital. It was a really nice presentation. Nan the school representative at University Hospital had a PowerPoint presentation to go through what cancer is, the different types, how you get cancer, what we don't know about getting cancer, treatments for cancer and so on. I think the kids really enjoyed it. They were very willing participants and eagerly answered questions. Owen showed them all his hickman line and talked about his medications and being in the hospital. Of course Nan spoke of how when Owen's counts get low he has to miss school so he doesn't get sick, because he could end up in the hospital for a fever and he doesn't want that right?... Hmmm Owen shakes his head - No he likes the hospital, he has fun there. Well I guess he has the right attitude, it certainly helps me when we have to go. He cries sometimes about going, but for the most part he doesn't mind it.
Tuesday, May 16, 2006 7:01 PM CDT Today went pretty well. We arrived at 9:00 and while we were waiting to be seen by the doctor Owen went and had pictures taken by a group there to support Paige's Butterfly run. She was a patient at University Hospital who lost here battle with Leukemia several years ago. This is the 10th annual fundraiser. Please view http://www.upstate.edu/events/butterfly06.php for more information. But the people there were taking pictures of the current childeren fighting cancer and their stories to be posted at the fundraiser. Owen was quite the ham with his picture taking! His check up went well and then we were back to the waitng room until the call came to go to the 3rd floor. Owen was find until then. He becomes nerved out as he doesn't like to have these procedures - they hurt and he doesn't feel great afterwards. Pretty soon he was asleep and I was off to wait.
Monday, May 15, 2006 6:11 PM CDT Well mothers day was nice - after a rough start. I got up and made a breakfast: scrambled eggs, homefries and toast. So much for that, Chris wasn't hungry, Tyler wouldn't eat, Owen wanted over easy eggs and now I had used up all the eggs to make a big batch of scrambled. So needless to say Jake and I had a nice mothers day breakfast!
Sunday, May 14, 2006 7:15 AM CDT Happy Mothers Day to all the mom's in the world! Mothers who never cease to amaze with their strength, caring, love and magic words to make everything better.
Saturday, May 13, 2006 8:34 AM CDT All is well. Owen went to school Friday and had a good day! Chris and I went to a friends house for a cookout and then to the Polish Falcons to meet some friends for a bit. Our big Anniversary night out! Yeah we are boring we were home by 11:30 - getting too old. All the young kids were just arriving when we were leaving. Ahhh to remember the day when you STARTED your night out at 11 instead of heading home!
Thursday, May 11, 2006 7:47 PM CDT Sanity night was a success!! I feel rejuvinated and fresh.
Wednesday, May 10, 2006 1:10 PM CDT Wanted to give a quick update as I am having 'sanity' night tonight. AKA - golf night!
Tuesday, May 9, 2006 8:42 PM CDT WBC 2.9 (4.5-13)
Monday, May 8, 2006 8:15 PM CDT Owen seems to be feeling better today. He has most of his voice back, but is still a little hoarse, but is still coughing quite a bit. He has had this cough for a while - but the docs says his lungs sound clear. Either way I feel better that we are going to the docs for a check-up tomorrow. He also will get 2 different types of chemo tomorrow. Cyclophosphamide IV 30 minutes, and Etophous by IV for 1 hour. Etophous is the 'new' chemo he will get to replace the Etoposide he recieved last time that he had the allergic reaction too. So hopefully he will tolerate this one. It is really the same type of chemo - just packaged in a different type of solution. Generally it is the solution the chemo is mixed with that causes the reaction. So hopefully... needless to say I am taking him. I want to be there in case he does have any issues ( and so does Grandma Pat LOL)!
Sunday, May 7, 2006 8:17 PM CDT Owen definately has some sort of virus. He has like NO voice. He says his throat only hurts sometimes, but he doesn't feel too good. He stayed in bed all day until dinner, and then perked up for an hour or so to play but then had to go back and lay down. I did my normal shopping today. Chris was mowing the lawn and the little two were playing outside, and Owen inside. I was halfway through Walmart when my phone rings - its Owen sobbing. He doesn't feel good, his tummy really hurts. I tell him he needs to get daddy. He says he has been trying to yell but he can't hear him on the mower. I told him to go downstairs and out on the deck and daddy will see him. A couple minutes later my phone rings back - Owen is hysterical, he says he can't get out of bed, his legs hurt and his tummy is hurting bad. I tell him to hang on I'll do something. I am in a spin - what do I do - run out of the store, to the car, probably get in an accident of get a speeding ticket racing home???? I try to call Chris friend around the corner - no one home - I call our friends Ken and Sue - Ken answers, he's at the lake but NO problem he will get Chris. So there's Chris mowing the lawn and Sue comes driving into the driveway beeping her horn like crazy - Chris was confused! So into the house - Owen was sobbing. Chris got him calmed down, he wasn't running a fever and I think he got really scared more than anything. But his tummy was really hurting - he said it wasn't the hurt like when he is nausea - so Chris got him some Miralax - stool softener. Soon enough Owen was able to go to the bathroom and was feeling alot better! Thank God that seems to be all it was!!!!! THANKYOU THANKYOU Ken and Sue for being there and acting so quickly! I felt so helpless on what to do.
Saturday, May 6, 2006 8:08 PM CDT Well the sun finally came out at what 12:45??? Our garage sales ended at 1:00. It was sooooo cold and wet we were freezing! It didn't go too bad though I think we made a good dent in what we started with. I am checking with the Jonathan Cancer Fund to see if they are interested in the remainder for their Garage Sales. I can't remember the date of theirs so I am hoping we are not too late.
Friday, May 5, 2006 10:17 AM We are going home!! Should be out of here fairly soon. I'll update later.\
Thursday, May 4, 2006 1:16 PM CDT It's 9:30pm the level check is back - its .31!!! It went up! I guess thats why after the 3rd draw they space the draws out 12 hours because the level checks can bounce around. So no two ways about it - we are here. Guess it is for the best if the chemo isn't out of his system then he needs to be here, so we are settling down now for bed ( well I am - night owl will probably be up awhile!)
Wednesday, May 3, 2006 8:35 AM All is well Owen had a good day / night. He played games most of the day with the nurses in training and the child life specialists that come to the floor to play. I scooted out later tonight to get him some UV shirts at Old Navy that my mom had seen. He will need to be very careful with the sun this summer. These are swim shirts will also block the sun but he will still wear sunscreen. Then off to the grocery store. Owen had a craving for tomato's and cuc's with sweet and sour salad dressing. So I ran in and grabbed him some. True to his word he ate them up! He was so bad about eating today due to his stomach being off - it is such a hard balance. His stomach is off from the chemo, so he doesn't want to eat, but his stomach needs to eat to help settle his stomach.
Tuesday, May 2, 2006 2:12 PM CDT We are in - settled in - got our liquid saline prep - and the chemo started at 1:30. So 24 hours of Methotrexate and then tomorrow he will get his 'rescue' drug 6 hours after completion and he will continue getting it until he reaches a level of .2 - they are hoping this will help and eliminate the mouth sours he got last time.
Monday, May 1, 2006 8:22 PM CDT It's a go! We will be leaving for the hospital right after Tyler gets on the bus - so a little after 8.
Sunday, April 30, 2006 8:03 PM CDT All around good day. I took Jake and Tyler to the mall for new sneaker shopping. Only problem they both wanted the same sneakers!!! Two peas in a pod I guess. Then home and a little summer preparation - I brought up all the summer outdoor chairs. Love doing this - it finally feels like outdoor time is coming when you see this.
Saturday, April 29, 2006 7:01 PM Poor Owen the spelling bee was a bust. He was all excited and ready to go - we were practicing before and he was doing awesome... then into the gym. As his turn approached Grandma Pat looked at me and said 'I'm so nervous!' Me too!!! His word was 'Deaf', Owen got up to the microphone and says "death, d-e-a-t-h, death" Oh no - he is out!!! The guy next to be tells me I need to go down and appeal as he clearly did not hear the word correctly. That I have the right to appeal and they should have stopped him anyways once they heard him repeat the word - that is suppose to be the whole reasoning behind it. So down I go - and in between kids I plead our case. The judges review - and they all say they heard Owen say the word 'deaf' and then spell the wrong word! Arghhhhh - oh well what can you do. I just felt so bad for Owen - he looked so sad sitting with us after, and he was struggling not to cry. He was ready to go - so as soon as there was a break in the rounds we scooted out. So Papa Fred, Grandma Lea, Owen, Jake and I went to Peters Pizzeria for lunch to celebrate his bravery in doing the bee and to let him know we were proud of him no matter what. There's always next year - too bad this one had to end on him not hearing the word! We explained how he ALWAYS needs to listen to the sentence because even if he 'thinks' he hears the word right - the sentence may clarify it of show him he did hear it wrong. He can always ask for a new sentence or a definition of the word to.
Thursday, April 27, 2006 5:21 PM Lets see where did my nightmare leave off? Oh yeah Tyler was sick. Turns out one of my dogs is sick too. He wouldn't eat last night and was very lathargic (sp?). His nose was hot and you just knew he was sick.
Wednesday, April 26, 2006 6:18 PM CDT Oh when will it end!!! Tyler is sick. He went to the nurses office today as they thought his breathing was labored. He fell sound asleep on the bus ride home, and then mom had to change 3 diapers from 3 until I got home at 5! By the time I got home he was running a fever of 102, and it quickly went up to 103.3! He was trembling and just wanted to be held. He then threw up 3 times. The poor thing. Needless to say I am keeping Owen FAR away. He is up in his room and I told him to stay there or our bedroom if he can, and not downstairs. Don't want to punish him - but he certainly doesn't need this. Tyler finally fell asleep so I am taking the chance to update as it may be a long night. When he is awake he cries if I get up to go anyplace. Just needs mommy.
Tuesday, April 25, 2006 7:43 PM CDT All quiet here. Owen slept until 9:30 and then took another nap this after noon for 2 hours. So might be it is all catching up to him finally and running low on energy. He looks great still and when he was awake he was feeling great.
Monday, April 24, 2006 11:25 AM CDT Well it is 1:30 and we are being released. Owens blood results just came back and his ANC is too low for chemo. He is only 26, and you have to have an ANC of 750 for this type of chemo. So looks like the virus did affect him after all. We will try again in a week - as it will take at least that long for his counts to come up to that level. We will have his blood drawn on monday in auburn, and then the hospital will let us know monday afternoon if we should come in tuesday. It is amazing that his counts are so low - he looks great. But being this low he will be unable to attend school either - he should be at at least 500 for being out and about. So send the homework home - he's got nothing but time!!!!
Sunday, April 23, 2006 8:10 PM CDT Today started out slow and Owen not feeling well. He came down the stairs crying that he didn't feel good. He ached all over. He couldn't really pinpoint anything more than he didn't feel good - and ached. He had no temperature. I got him a blanket and pillow and got him on the couch where he continued to just cry and wanting me to cuddle. He pretty much felt just crummy all morning. Then around noon he started feeling better and then boom - he was feeling great and playing and happy! I can't figure it out! We had a good 'last day' at home. Aunt Shelly and PJ stopped by in the afternoon for a while, so that was definatley a pickme up for Owen! Then Owen and Chris went outside for a little target practice - but not for long a storm rolled in. The first boom of thunder sent Jake racing for the house!
Saturday, April 22, 2006 3:55 PM CDT Things are fine...Owen is feeling good. He sounds hoarse but he says he feels fine. His temp is remaining steady around 99.5 so I think the doc hit it right - just viral. I did call the hospital thing morning and all his cultures are indeed negative. So we are sooo happy to me home.
Friday, April 21, 2006 9:00 PM Just wanted to give you a quick update - things are going fine! I still feel like I am in dream land that we were released and are home. I think we stunned everyone (the staff) that we were leaving - so that was a little scary that they couldn't believe the doc was letting us go so quick. Owen was even running a temp when we left! He felt warm as we were finishing up de-accessing him from the IV pole so Brooke took his temp - yep 38.5 (101.3). So I thought everything would come to a halt and I would be retrieving our things from the car. But she called Dr. Dubowy and he said - nope send him home - it is viral, he will run a fever on and off, but as long as he feels well, acts fine and looks good - send him! So off we went. I even got on a conference call on the way home and Owen was singing away in the seat next to me. Diane at work started laughing (yes here I am on a work call with background mucic via Owen). She said I am sorry but I can here Owen and he sounds FINE! I said yes he is acting just great LOL!
Thursday, April 20, 2006 4:32 PM CDT All right lets start the day over from scratch....
Thursday, April 20, 2006 8:20 AM Owen woke up this morning throwing up, coughing and a fever of 102.4 The office opens at 8:00 so the on-call line asked me to wait until then to call. His temp is 104 right now - I am waiting for the doctor office to call back the nurse was going to check with Dr. Dubowy for what he wanted us to do.
Wednesday, April 19, 2006 7:59 PM CDT Owen made it through the night without a fever. YEAH!!! Off to school he went, but late morning he went to the nurse because his throat was hurting. He had no fever (99.4) but his throat was really red. Grandma Pat picked him up and he went to the doctors to be safe. The quick strep test came back negative which is 98 ccurate, but it will get sent out to make sure. He is coughing a little but the doctor said the cough sounded ok and his chest sounds clear. So hopefully it is all nothing - or the usual - something 'viral' is the answer for the unexplained. He does have a few bruises on his legs and they are quite large, but he did fall a few times on Easter playing basketball. So along with leukemia bruises do take longer to heal, and seem to look worse. I am going to call the Onogology doctor tomorrow because there is Chicken Pox at school. It is in kindergarten, which is at the opposite end of the school, but better safe than sorry for Owen and all the other kids he will be in contact with when we go inpatient on Monday.
Tuesday, April 18, 2006 9:47 PM Another good day at school. Owen had fun and even called to stay later. He wanted to go to specials. It was music and they were practicing on the recorder (plastic flute). He loves this, and so we have to say anytime he is ready to stay late we would love for him to stay. The more school time the better. It actually works out ok, Tyler gets off the bus at 3 so mom can be there by 3:20 or so. They really don't get out of school till then, we just feel bad getting Ty right off the bus and back into the car. But it works okay. Owen did ask for tummy medicine in the morning and later in the afternoon. He seems to be feeling fine, he says his tummy is just off and he doesn't want to get sick. He was hiding on Nurse Jane today when he went in to get his medicine and gave her a scare! I told her SHE should take the tummy medicine now! But thats Owen - always a character! He was fine coming home and played outside at Grandma Pats house, but then got too HOT! Now I have to share a story about Jake. He IS the child giving me my gray hairs (not Owen believe it or not), as well as Grandma Pat. Grandma started out to pick up Owen. They were well on their way when Jake decided he wanted crackers. Jake becomes quite Obsessive when he wants something. Grandma tried to explain how he could have them when they got home, but that was not good enough. Jake became miserable and yelling how he 'needed' crackers. It was a LONG 20 minute drive to school. So tonight in the tub Jake tells me that Grandma Pat is MEAN to him. I was confused... what? Grandma isn't mean she loves you. "No mommy - I wanted crackers and grandma told me NO, thats mean to me" HMMMMM - ok round 2 of trying to explain WHY Grandma couldn't give Jake crackers - not sure I did any better than Grandma did!!! He is a trip.
Monday, April 17, 2006 7:09 PM CDT Day one of school went fine. Owen did go to the nurse around 10 to get a benadryl for his stomach. I think it was more nerves than anything, and so did Nurse Jane. She said he was all smiles and looked fine. But I okayed him to have it. He was back at the nurses at 2:15 and was there when Grandma Pat came to pick him up. He told me his tummy was off again. We talked about how he can't use the tummy thing to get out of class or to take a break... if he needs a breather that is fine but he doesn't have to take the medicine everytime. He has hardly been taking any tummy medicine at all lately... and usually it is right after a big meal or before bed. Hopefully this will calm down as he settles into a normal schedule.
Sunday, April 16, 2006 8:31 PM Happy Easter Everyone!
Saturday, April 15, 2006 7:07 PM CDT Owen had another great day. We started out at 10:30am to head to Rochester. First stop Bugaboo Creek. Owen ordered the kids 1/2 rack of ribs and it was truly a 1/2 a rack! It was enough for any adult! He really enjoyed them as his face was caked in sauce! After lunch we headed to the Auditorium. Aunt Susie gave us awesome directions from Bugaboo - we made it there quickly. Thankyou Aunt Susie. Any time I use the Mapquest directions we ALWAYS get lost!
Friday, April 14, 2006 7:01 PM CDT Another good day. He took Aunt Anna out for ice cream after church last night. Then back to watch a movie. Owen arrived home late morning from Aunt Annas. He did some writing homework and then Aunt Anna picked him back up to go back to church. He has been having just a great time doing all the special functions at church this week with Aunt Anna. He got feeling a little hot and nausea during the sermon - I guess it lasted 2 hours! So he took a break and went outside to get some air, and then felt alot better. He caused a little panic in Aunt Anna - she could see it in his face that he was starting to not feel well. He was sitting with a friend as Anna was up in front and he had to stay in the pew. He went to the bathroom and then outside but when they returned they gave her the OK sign so she was able to breathe again. He went back to Aunt Annas and then back to church to help decorate for Easter. I picked him up at church and back to home. Thankyou so much Aunt Anna for some very special days with Owen!!!
Thursday, April 13, 2006 8:39 PM CDT A quiet and uneventful day - gotta love them!
Wednesday, April 12, 2006 5:51 PM Nice and easy day today. Grandma Pat took Owen for his blood transfusion and it went very smoothly. They had to call me to get a verbal consent for giving blood but then that was it. The hardest part was rolling Owen out of bed at 7 am!
Tuesday, April 11, 2006 7:05 PM CDT Owen had a great time at Aunt Annas. They went to church and then back to her house. They played LIFE which seems to be a favorite game now. That is what he plays at the hospital all the time. He is very observant though. In Aunt Annas game college only cost $40,000, but at the hospital it cost $100,000. Yes Owen that is a fact of 'LIFE' the prices keep on going up!!! They they watched Narnia. Aunt Anna gave Owen more of the Japan treats like what he got from Megan. (Megan is Aunt Annas daughter). She will be heading to Japan to visit her so she will grab more then. Thankyou Aunt Anna for a great night and a favorite snack! What will we do later, can't just run to the store for these?! Erica rolled Owen out of bed this morning and home by 10, thanks for the lift!
Monday, April 10, 2006 9:05 PM Today was SUPPOSE to be a nice uneventful easy day for Grandma Pat to take Owen to his doc appointment. Such seems to be our life it was not. It started out that Grandma didn't have authority to take Owen - the whole Hippa law thing. So I had to fax over a signed letter that I gave her permission to act on my behalf. She would bring home the real document for me to fill out to give her authority in the future. So a little while later Zarina our Nurse Practitioner called... Owen had a reaction to the Etoposide chemo. Thankfully the nurse tending Owen was quick to spot it. He was starting to cough alot - same as he did with the platelettes. They listened to his respiratory and sure enough his lungs were starting to struggle and close up. So they stopped the chemo, gave him benadryl, solumedrol and an albuterol (breathing) treatment. Poor Grandma! Although she said neither Owen nor Grandma realized anything was wrong until everyone was running around and in and out checking Owen! So next time he is suppose to get Etoposide he will get etopophos instead. It is really the same chemo just a different mixture, they believe the reaction was caused by the fluid the chemo is mixed in. He will also get pre-medicated with the benedryl, solumedrol and cimetidine just to be sure. The second chemo Cytoxan went in uneventful. We are on a different route and he will be getting chemos he never did the first time around - so I WILL take him when he is being introduced to something new from now on!!!
Sunday, April 9, 2006 6:41 PM CDT We had a very good family day today. Started out just a tad mixed up. Tyler and I were up first at 8:00. I got Ty fed and I got in the shower. Jake awoke at 8:45, and at 9:00 I started trying to pry Owen and Chris out of bed. We were going to the Easter Egg Hunt at Cayuga Elementary school at 10:00. Out of the house at 9:35 so running a little late to make it... Daddy made good time and we arrived at 9:50 - but wait the school yard was EMPTY!!! Owen started saying it was at AJ school that is where it always is... so off in the other direction .. now we have little chance of making it. Arrive at 9:58... but WHAT this school is empty! I must have messed up - it must have been yesterday. Owen is bummed out and sad. I remind him we are still going to the mall to see the Easter Bunny later so it will still be a fun day. We arrive back home and I check the flyer... ahhh there's the problem it starts at 2!!! So back out the door at 1:30 and yeah we make it in time!
Saturday, April 8, 2006 6:53 PM CDT Things are all going well. Owen hasn't had any big issues. His legs were real sore last night, not sure why the chemo affects him this way. One of the types he gets does cause joint pain but I didn't think this last one did. I helped him up the stairs last night they were that sore.
Friday, April 7, 2006 4:28 PM Just a quick update as I won't be home till late tonight - Nucor Town Hall Meeting.
Thursday, April 6, 2006 6:45 PM We finally broke loose at 12:30! After all the paperwork was done and scripts filled they called Wegmans to verify if they would have his 6MP pills - it is an oral chemo he has to have 2 more days. They did not. So down to the pharmacy at the hospital. No good - the script was not 'stamped' by the doctor and they won't fill it. Back up to the floor and the resident stamps it. Back down. Now have to wait 30 minutes for it to be filled. Owen went off for Tutoring since we had to wait anyways - figured may as well get it in!
Wednesday, April 5, 2006 7:24 AM Good news! Owens Meth level is .25 so unless something really really weird happens he will be released early morning! We are soooo close to the .2 level - i tried to get a release tonight but no go.... He did however just throw up about 10 minutes ago. He has been complaining of an upset stomach, but he also has not wanted to eat all day because of it. Other than that he has been fine all day and playing board games with Jonathan the older boy in the same room as us. He says he feels alot better now - and will try to eat in a little bit. It is PROP night which is a parent support group. So they bring cookies and canolis (sp?) and hang out and play games. One of Owens nurses that usually works the night shift - Detria is here - just as a visitor - so he is off to play games with her. So hopefully things go well and we will be home bright and early!
Tuesday, April 4, 2006 4:29 PM Well needless to say I DID update earlier but I guess I I didn't save when I was done so alas I am retyping ...
Monday, April 3, 2006 6:20 PM Owen officially started his BIG bag of 24 hour chemo at 5:10pm. He had to be hydrated enough to start and now they will keep a close monitor on all urine samples to make sure he is getting enough fluids to prevent the chemo from becoming too toxic too his system. Oh let the 'fun' begin. We are rooming with a little 2 year old Brian. He is a little sweetheart. Owen has become the 'big' brother. Wow like he doesn't get enough of that at home. Amazing how much patience he has here with Brian! He has been entertaining and playing with him as his mom is not here and aunt left a while ago. They took their dinners out to the family room to eat together. Now they are jamming to Toby Keith - and I mean JAMMING, the whole floor is shaking. I have to keep telling Owen to turn it down but 'somehow' the volume keeps going up. They are busy doing lots of puzzles too. So looks like it should be a good night. If anything changes I'll keep you informed - but as they say this time around is a 'boring' inpatient. To me boring is very good!!!! I like boring.
Sunday, April 2, 2006 7:57 PM CDT Well today started out all messed up. I made a doc appt for Jake at 10:45. He has had diahreha for several days now, and last night was just totally liquid. I know can we have any more illnesses in this house! We have a huge black cloud over our home. So it was 9:00, I showered, took my time and we were out of the house at 9:45 plenty of time to get to Camilus. I walk in and Jakes is the only folder in the IN slot. Ahh Mrs Wawrzaszek - do you know your appointment was at 10:45? I am like Yeah... Well they informed me its now 11:45. I was soooo confused... how did I lose an hour I know it was 9:45 when I left. "Did you set your clocks ahead?" Oh yeah that thing - nope. They kind of had figured that out because as often as I am there they all know me and I do not have a history of being late. So darn now I am an hour behind all day! Needless to say it is another viral thing that has to run its course. As long as he is not getting dehydrated and is acting fine we just have to wait it out. But it IS communicable. Great - hopefully Owen will not be affected, and is not a carrier for going up to the hospital tomorrow.
Saturday, April 1, 2006 6:20 PM Owen had an absolutely awesome time with Sean! He was so bubbly and chatty. It was so great seeing him enjoying life so much. They spent the night playing X-Box, then they dressed up as batman and terrorized Jake and Tyler who loved it the whole time! Not sure what time they fell asleep - they camped out in the living room. I went to bed at 10:30 and they were still talking galore. Ahhh to be with a friend again. Owen has to miss out on so much of being a kid, it is so unfair, but it is just great to see him appreciate the smallest thing he can get to restore normalcy. Sean stayed today until 3:00 so it was a full day of fun again.
Friday, March 31, 2006 5:49 PM CST Owen had a good day. I did call the doctor because he kept coughing last night and was complaining that his throat was just constantly irritating him. He was also quite stiff last night and even asked for help to get up the stairs - it hurt to climb up them. He woke up this morning still coughing alot, and stiff. They were not concerned, the stiffness was probably just muscle soreness from finally being alot more mobile after a few weeks of being basically confined to a bed. The cough was probably the remainder of his flu working its way out of his system. If he became worse or we were still concerned they wanted us to call this weekend - otherwise they would be seeing him on Monday anyways for the start of his chemo. He hasn't coughed really the rest of the day and is moving pretty good now.
Thursday, March 30, 2006 5:47 PM CST *** I have added a link above that details Owens whole treatment plan for the next 2 years. Unless something drastic comes back in the FISH detail analysis of his testicle biopsy it looks like he will follow the 2 year ALL protocol for testicular relapse. So I have put his weekly appointments on the spreadsheet. If any dates change I will update it accordingly, but this will give everyone a view of what he has done and where he is going. I have posted it on a 'free' site so when clicking on it the link it requires you to wait about 30 seconds before giving you the option to download it. When you click on Download you will be prompted to open it OR save it to your own computer. *****
Wednesday, March 29, 2006 6:38 PM CST Home with all the caous I remember... kids fighting...kids not eating... kids dancing... kids playing... I am loving it!! Things started a little rough today. We have been moving Owens IV time a little bit back each time I give it because he got it so later at the hospital tuesday morning than we would want to be giving it at home. So since it is suppose to be 12 hours apart, I keep doing it about 11 1/2 hours apart which they said was okay. So by this morning I was at 7am which put me home while Tyler and Jake had to get up for school. So at 8 when it was done I had to disappear to take care of it and they all needed Mommy to help them finish getting ready. Grandma Pat was trying but they were all yelling "NO - I need Mommy". Can't blame them I had basically disappeared for 2 weeks except for a few hours here and there with them so of course they wanted me. Tonight I did his night time at 6:30 so tomorrow morning I can move it to 6am and will be out of here normal time at 7:15. So I basically get them up, say goodbye and go and things will be more normal. As far as the IV - piece of cake! I already do the flushing of lines, so it is really just flushing his line, adding the connection to the IV machine - turning it on - then when it is done, re-flushing his line and he is good to go!
Tuesday, March 28, 2006 89:03 PM Ahhh - to be home - ALL of us! It was absolutely wonderful to arrive and stay. We had a beautiful day playing outside. We even broke down and let Owen ride the 4-wheeler. We told him he had to go slooooow, because he can't afford to get hurt, he is just starting to get platelettes. So he promised and true to his word he barely moved - I mean Tyler walks faster than what he rode. So we let him go 'a little ' faster. We practiced hitting some balls and just hung out on the swing set.
Monday, March 27, 2006 7:00 PM Another great day. Jake and Grandma Pat came up for a visit again. Jake and Owen played dinosaurs for a few hours. Owen was loving having his brother here - until Jake started getting getting tired, and grumpy and not wanting to share anymore. So it was time to go - and what a nightmare that was!!! Jake threw the temper tantrum of the century. I had to carry him out of here screaming that he was not leaving that he wanted to stay at the hospital, to put him down... on and on. I had a hard time getting him down and into Grandmas car, where he proceeded to scream and cry until past Elbridge!! He did wake up from his nap later and all on his own tell Grandma he was a naughty boy at the hospital and he was sorry. Then she had him call me and he told me the same. Definately need to end this immediately. Hopefully going home and a little more normalcy around the house will help. I am amazed though not one person questioned me carrying this screaming child out of the hospital! I got plenty of looks - trust me - but no one seemed concerned whether he was mine or not - they probably just wanted him out!
Sunday, March 26, 2006 7:30 PM Owen had an awesome day! NO fevers since 6 last night so over 24 hours. Maybe they finally did find the big source of infection and we are kicking it to the curb!
Saturday, March 25, 2006 8:30 PM Owen finally woke up around 1:00 for good. He was spiking a fever 39.3 (102.8). He got his tylenol and Zofran in and then we were off to the shower. The shower definately perked him up. So much he almost got another squirt gun dosing from Barb. He was sitting in the chair listening to the 'Beer for his horses' CD, so he had earphones in both ears. Barb came in to do vitals, she asked him if anything was hurting. "What?" Is anything hurting. "What?" IS ANYTHING HURTING. "I can't hear you with these" and points to his ear phones. Barb gave him the look and we were cracking up. SO finally he removed the plugs so he could talk... she had to tell him she was about to let him have it.... he was very pleased with himself!
Friday, March 24, 2006 8:54 PM I have returned after a nice day at home with the boys. Tylers chest check was clear so no more Neubulizer!! We played outside most of the afternoon so that was very refreshing after being in for so many days.
Thursday, March 23, 2006 8:30 PM Owen is holding steady at 37.9 (100.2), just below the fever mark at 38. Oh I hope he holds, these fevers are driving me insane. The doctor FINALLY came by - he just stuck his head in the room to talk - didn't even examine Owen! He said the X-Ray showed that the suspicious spots he had before are gone and it is clear. The cultures they have taken the last couple of days are still showing negative which means it is still probably the flu. I said to run 103 and higher for 12 hours - thats the flu??? With nothing (tylenol) bringing it down? And after going 2 days without a fever?? He said definately and hopefully was the last attempts of the flu to grab ahold. I raised my concerns that Owen has minimal WBC and how dangerous the fever is and if there was anything to do. I know from another web site that the Dad is giving their daughter Granuloytes (his white blood cells) to help her fight infections until her immune system kicks in. He said they use to do that alot, but now it is only used in extreme cases. If it were a bacterial infection in Owen depending on the severity of it this might be something they would consider but otherwise no. It has its side effects too with reactions and chills or fever and then it is hard to determine what the fever is from. So for now it is a sit and wait and hope and pray. We are back to having to go 48 hours with no fever AND Owen getting some white blood cells, so Saturday release is probably not a reality. I just want Owen to get better so if it is longer here then so be it, I want to make sure when we walk out those doors we are not doing a big U-turn.
Wednesday, March 22, 2006 8:00 PM Owen has continued to have fevers all day. It hasn't really seemed to affect him - he has been in a great mood and has been playing Clue and Monolpoly with myself and one of the Child Life Specialists. I feel bad for everyone else coming in - they have to wear face masks, gloves and gowns whenever they are in here, just because they can come in contact with the other kids on the floor. The poor tutor and child life person sat in here all dressed for well over an hour each all garbed up!
Tuesday, March 21, 2006 8:00 PM I left at 11:00, and Owens day did not get much better. He had a scare early on when getting into bed he kneeled on his tube line and pulled the tubes in his chest a little. This scared him more than anything. The nurse came in and checked it and it appeared ok. She flushed both lines to make sure they were working okay.
Monday, March 20, 2006 9:04 PM Well we got some unhappy news today. The GI test they took from Owen's nose Saturday came back positive for FLU!!! So he is now in Isolation, and has to be in the hospital a minimum of 5 more days to finish the antibiotics. Mom called me late this afternoon, they had been playing in the playroom when the nurse came to get them and send them back to the room.
Sunday, March 19, 2006 6:11 PM Owen had a very good day (except eating). We played Monopoly with Brooke this morning. Then Owen and I played CLUE until about 1:30. He was ready at that point to do a little lay down, his stomach was bothering him. So we went back to the room and watched Matilda. Grandma Pat came up and we went back to the playroom to play some more CLUE. Owen is loving this game! They were closing the playroom at 4:30 so we had to move the game back to Owen's room. Grandma left and then Owen started to watch Batman Begins. He has the Batman Begins mask here so he got all dressed up and Brooke took Batman for a stroll on the floor to cheer up everyone. We are now back in our room again. One of the nurses is bringing Owen in a Kid Cuisine - fried chicken when she comes at 7. Thankyou Thankyou - I didn't want to run to a store, but if Owen was going to eat I would have!!! So hopefully he will eat that!!! He says he will. At least he has been drinking today. But NO fevers at all today YEAH YEAH YEAH that is a good sign. Night time is coming though so knock on wood the fevers won't show up.
Saturday, March 18, 2006 6:00 PM I arrived back here at 3:45. Jake was off at a birthday party with Grandma Pat. Tyler ran my errands with me and of course a stop at McDonalds for French Fries and Nuggets. Chris and I timed it perfect and arrived home same time. He was exhausted - he didn't sleep well. He says he didn't know if he was getting sick or just wiped out, he was having chills. Lets hope he is not getting sick now!!!
Friday, March 17, 2006 8:30 PM Just spoke to Owen he is in real good spirits. He did however spike another fever - 39.0 = 102.2 Oh I wish these fevers would end and the antibiotics take care of this infection!!!! He did eat a 1/2 grilled cheese so that is good. He has asked me to bring him Mac -n- cheese tomorrow. He says cheese doesn't taste weird so maybe he can eat more cheese things. Just have to watch the cheese don't want to bring on other issues!!! Lily ( from Owens Make-a-wish) and her husband Dave (?) stopped by, Grandma Bonnie came up to visit and then Papa Fred and Grandma Lea too so Owie had lots of visitors today. Chris said he was Full-of-it when they were there, so that is great to hear. Thankyou for the cheer - me - up committee!!! As for me - I am off to what I hope will be a very good nights sleep!
Thursday, March 16, 2006 6:09 PM EST Owen started having a pretty good day. He was teasing the nurses and playing Xbox. I left at 11:00 to come home. At 11:30 Owen went down to the school room here with the hospital tutor Mary Ellen and had some school time - yeah!!! He did well and seemed to enjoy going. He had a shower and his bandage was changed. Then he started feeling crappy. His tummy was bothering him and he got a headache.
Wednesday, March 15, 2006 8:30 PM Well all good things come to an end... Owen spiked a fever at 7:00. He was complaining that his tummy was starting to hurt when he was in the playroom, so we went back to our room. He got some Zofran for his stomach. Then he said he was cold and I got him an extra blanket. He wasn't warm so I though OK maybe from being up and about and then coming back to the room - it felt cold to me too. Half hour later I checked him again and he was HOT. I got the thermometer and sure enough 39.2 (102.6).
Tuesday, March 14, 2006 10:42 PM CST It is 10:45 and Owen is being admitted. They had to take blood through his vein to culture. Poor thing it took 3 pokes to get it. They also need to draw it from his hickman line to test for infection in the line too. Anytime he runs a fever the line must be tested as well as a regular blood draw. They have been unable to get it from his hickman yet, these dare lines have been so much trouble with gettng blood out. Everything goes in fine - its just getting the blood out. They are trying to run some IV solution through the lines for a while and see if that works, it was one of the tricks that worked previously. He isn't feeling good, his tummy is really upset and he is just shivering. So now it is just the wait and see if anything grows from the cultures which can take up to 24 hours to start growing. I will let you know as soon as we find anything. Lets just pray it is just a viral infection and no bacterial growths in him.
Monday, March 13, 2006 6:52 PM CST Owen didn't have a very good day. His tummy was really hurting. He said it just 'hurt' not really nausea. He called me around 2:00 just sobbing with how much he hurt. He said his arms by his elbows were throbbing too. I asked him if he took any tylenol and he said he didn't want the codeine. I told him regular tylenol would also take the pain away. He just continued to cry, he said he just needed me.... talk about ripping your heart out. I continued to talk with him and told him Daddy was there for anything he needed.. "Mom - he's trying but its just not the same..." Poor Daddy he is doing his best but a mom is a mom.
Sunday, March 12, 2006 3:21 PM CST This is Owen in his new Engineers cap. Looks like the real thing - just needs some overalls!
Saturday, March 11, 2006 7:06 PM CST Owen had an awesome night and so did SU!!!! Can't ask for anymore than that! So here's to another great night for the both of them. Friday, March 10, 2006 7:33 PM CST Room #7612 Phone # 464-3691
Thursday, March 9, 2006 6:48 PM CST Owen has had a good couple of days. He went to school for a little bit yesterday to take his ELA math test, and then again today for about 4 hours. He has thrown up a few times the last couple of days but after a snooze he is feeling fine.
Wednesday, March 8, 2006 8:03 PM CST I want to dedicate tonight's journal in memory of Kelly (Green) Lipiska. Kelly lost her courageous battle with Leukemia on Frday March 3rd and was laid to rest today March 8th. It was a very emotional, yet beautiful day. Kelly will be sadly missed by all her family and friends, but the memories of Kelly can never be taken away and will live within everyone. One of Kelly's friends did the eulogy today and did an a spectacular job. She touched everyone, with laughters of Kelly along with the sadness of mourning for her. I don't think there was a dry eye in the church anywhere. Kelly was a very special person who touched alot of lives and that was very evident today. Please take a moment and say a prayer for Kelly's family and the tough road ahead they will have to transition to a life without Kelly. She has left behind two beautiful children whom she will live within, along with one child she will now be reunited with. We are all thinking of you all, make sure you reach out for help, support is a wonderful healing aid!
Tuesday, March 7, 2006 7:01 PM CST Owen ended up not getting the transfusion today. He was holding steady so they wanted to wait until he was inpatient this friday as they figure he will probably slowly keep going down so to wait until he was real low and really needed it. Plus since he was in the hospital it would be easier to monitor him. So he basically had a checkup. Zarina the NP said that she has all the emails from Dr. Horan and the other doctors and from here they are suggesting possible a conference with us and the other doctors (Rochester and Dr.Horan) and throw everything on the table and maybe with all of us together talking we can come to a consensus. So we will see how this pans out. But it appears most doctors are leaning towards the 2 year protocol. Owen COULD have returned to school - they were on their way home at 11:30, but of course Daddy was in charge and Owen didn't make it. Tomorrow he WILL be in school unless he is REALLY sick. Grandma Pat is in charge! Jake hasn't been feeling well so he went to the doctors today and he has strep so we have to be on the watch for this spreading through out the house again! When will this all end!
Monday, March 6, 2006 7:11 PM CST Just a quick update to this morning. Chris called me around 9 and said the back of Owen's hands were all swollen, you couldn't even see his knuckles. His ankles were swollen. When he took his shirt and pants off there were marks from the elastics due to him swelling up. His penis was also really itchy. I called the doctor and they felt we did not have to be alarmed. The swelling was probably due to all the IV fluids he received over the weekend. Since he was feeling okay other than an upset stomach they thought we should just watch him. The itching was probably due to his skin healing from the radiation. He needs to go in tomorrow though at 10:15 for a blood transfusion. His Hemoglobin is down to 9 (11.5-15.5 is normal). So this is his first transfusion which for being in treatment for over a month is pretty good. His hands have already gone down alot since this morning but are still puffy. He is feeling pretty good right now. He is just about to get in the shower so I can change his bandage over his hickman line. Other than that it was a pretty quiet day - Chris said he stayed in bed all day though, which he can not let him do - that is how he starts spiraling down.
Saturday, March 4, 2006 7:40 PM CST Another good day all the way around. Owen is not feeling any side effects yet from the chemo and we have 3 rounds down - one more to go at 4:30am. Then he will get the 2 Aspariginase shots before he is released to go home tomorrow. So we are on schedule to be out of here at a decent hour I hope. Actually Grandma Pat will be coming up a little before 11, and I will be walking up to the dome for the final SU game. I hope we have a respectible finish to the year!!!
Friday, March 3, 2006 7:00 PM CST Just a quick update. Owen LOVES his room mates! We are in a 3 person room so he has 2. They are all giggling and laughing and planning how to make the nurses fall when they come in the room in the middle of the night and disturb their sleep. They are playing Playstation together. Owen says he is having a great time and won't want to leave now!!!
Thursday, March 2, 2006 7:59 PM CST Anther great day!!! Owen made it pretty much the whole day at school! He arrived at 9:30 and stayed until 2:30 with NO visits to the nurses office for a rest! Wow - great!!!! He said he had a good day and felt great! Oh how wonderful is that... too bad we have to break for treatment now. But hopefully a smooth weekend and back on Monday! Papa Fred picked Owen up and they went to McDonalds to play and then the dollar store. Thankyou Papa for letting Owen have a special day.
Wednesday, March 1, 2006 7:17 PM CST Another good day... and yes another big YEAH... it was another day at school!
Tuesday, February 28, 2006 4:51 PM CST YEAH YEAH YEAH Owen went to school! He got up this morning and was crying, he was hurting. So Grandma got him to get up and come downstairs and eat. Then she gave him some pain medicine.
Monday, February 27, 2006 4:33 PM CST Owen has not had a good day. He has gotten sick, and his stomach is very upset. He has been holding steady at 99.9 temperature all day. So pray he is able to hold away the fever that seems to be trying to brew.
Sunday, February 26, 2006 5:47 PM CST Owen is making progress. He is in and out of bed on his own now but still quite sore and moving slow. He was in a better mood today and had his sense of humor back most of the day. His stomach is bothering him a little today though, he feels like he is going to throw up, but so far he has not. So hopefully tomorrow he will be even better. We will wait till the morning and see how he feels for school... I am keeping my fingers crossed!
Saturday, February 25, 2006 5:12 PM CST Not much change here. Owen was hurting all last night and he continues to be sore today. It is more from the Bone Marrow Aspiration than the spinal tap. The spinal he is usually just a little bit sore it is more headaches with that. He has not had any headaches yet. But he has either been in his room - curtains drawn or our bedroom with the curtains drawn. He has not got out of bed all day. He has been running a little warm - 99.8 most of the day. As long as he stays there and no warmer 100.4 is the magic number we have to call the doc. I told him he is not allowed to go warmer and that was an ORDER. I did manage to get a smile for that.
Friday, February 24, 2006 7:09 PM CST Beep..Beep..Beep.. its the alarm its 2:30am. "Owen? Do you want to eat?" "YES!" and gets right out of bed. He picks spagetti and sauce and yes it was already cooked! After he eats he comes back to bed and lets me know that this will help but he will probably still be hungry in the morning... oh yes Owen I know! Alarm goes off again at 5:30 - time to get up for work. Chris and Owen came and picked me up at 10:00. Owen was sobbing he was so hungry. Chris said he had been crying all morning. He cried until we got to Elbridge and then fell asleep. We arrived at University at 10:30 and went up to the
Thursday, February 23, 2006 6:44 PM CST I called Grandma Pat last night to tell her to take the day off. Since Owen didn't have any radiation today Chris said he would stay with the boys and she could have some time off. Since I am missing so much work I have not been taking flex time (my every other monday off), so she doesn't get that extra day either. But instead of a day off she decided she would come get Owen and they could have a special day. Owen thought the Zoo, then Grandma said what about Strong Museum? The eyes lit up - he loves Strong Museum (especially Wegmans, he would stay there all day).
Wednesday, February 22, 2006 5:35 PM CST Radiation is done!!! Yeah! Owen needs to return in one month for a checkup. The radiation department gave Owen a $20 gift certificate to Toys R Us because they loved him. He was an excellent patient! Thankyou so much - right up Owens alley!
Monday, February 20, 2006 6:34 PM CST Owen had another good day. I got a call from him on his way home from radiation, and as soon as I answered he was 'Hi Mommy!', great mood. Usually when he calls its with his sick voice not feeling well. So it was great to hear him so peppy. He has 2 more days of radiation left. His regular chemo appointment friday is at 11:45. Chris said they are going to do a bone marrow aspiration as well. I am going to call tomorrow to comfirm and hope for an earlier time. Since he has to have anesthesia before either the spinal or BM he can't eat. So that will be a long morning if he can't eat. I will have to get him up at 4am to get his meal into him! Of Course he may get up that time anyway to eat his middle of the night meal!
Sunday, February 19, 2006 6:40 PM CST We had a nice dinner at Balloons last night. Myself, Chris, my brother Steve, Dad and Leanne. Dad picked up the tab so even better! It was for Steves (feb) and my (mar) birthdays. Thankyou Dad and Leanne!!! Always like a nice dinner.
Saturday, February 18, 2006 4:32 PM CST Owen had an AWESOME day!
Friday, February 17, 2006 5:29 PM CST Everyone still here - or did you blow away in the storm!? Tyler's school closed early due to power outage. Mom ran and got him at 10:15 and brought him to the Gavras Center. He had a ball being at his old school and joining in all the singing and activities with Jake. Maureen and Elaine were thrilled to see Ty again. We lost one garbage can, all the lids to the other two cans, and Chris' snowmobile trailer flipped over into the wooden fence on our property edge. Not as bad as I thought it could have been. The wind here is usually double what ever it is someplace else so I was surprised out house didn't get taken!
Thursday, February 16, 2006 7:48 PM CST Owen and I headed off to Syracuse at 8:00. His legs were cramping by the time we got there, and he was crying. I got him in and down to radiation. He looked so sad and in pain getting up on the table. Once we were done there we headed up to 5C for his doc appt. and chemo. They put him in a room quickly so he could lay down. He fell asleep almost instantly. Again they had trouble accessing his tube line to draw blood. Pushing saline in works great, it is drawing the blood out that seems to stick. Dr. Souid had them hook up an IV to run saline thru his line for awhile. The thought was there were no issues while he was inpatient drawing blood from the lines so possibly they just need to have solution run through for awhile. After an hour of solution it worked great!
Thursday, February 16, 2006 6:30 AM CST Just wanted to do a quick update to say Owen had another good night. I took a needed R&R and went to the SU game so I didn't get a chance to update. I know - WHY did I go to the game? SU is just not doing well but it was a fun night anyways. Owen had radiation at 9 and then doc appt and chemo at 9:30. I update later - about today! Tuesday, February 14, 2006 6:57 PM CST Ahhh what a difference a day makes!
Monday, February 13, 2006 9:16PM CST Owen had a so-so day. His stomach bothered him on and off. He didn't get up until 10, and then Chris and him were off to Syracuse for radiation.
Sunday, February 12, 2006 5:59 PM CST Owen had a very good day today and full of gifts and visits. First Papa W. and Grandma Lea with a yummy cheesecake! Thankyou thankyou! Owen loves cheesecake.
Saturday, February 11, 2006 8:46 AM CST Well Owen made it home and it is sooo nice. Had a little bit of a scare around 6:00, he didn't feel good and started getting warm. He went up to 100.2, stayed there and then went back down. Whew! Although I have to say I am still so confused about all of this. I don't understand how with no counts he shouldn't be in the hospital. The first time around he had to have a WBC (white blood count) at a certain level and the total ANC at a certain level. Chris thinks it is because he has a clean bone marrow and blood going into this. But he has no restrictions on eating fresh fruit or anything. I definately have questions for the his doctor when we see him this week.
Saturday, February 11, 2006 11:45 AM CST
Friday, February 10, 2006 12:04 AM CST Things are going well. Owen had a good night. He woke up around 4am with a stomach ache and they gave him the zofran thru his Hickman. We both slept well - thanks to Papa bringing us some nice warm blankets from home! It is cold in the rooms, and the breeze comes right through the windows.
Thursday, February 9, 2006 10:03 AM CST 8:15 PM
Thursday, February 9, 2006 10:03 AM CST Wow what a long night. Wednesday, February 8, 2006 5:05 PM CST 10:00PM
Tuesday, February 7, 2006 6:33 PM CST Owen said he wasn't feel well last night. He cried that his belly hurt. He took his Zofran and that helped. Then when we were up in bed he said his legs were cramping. I told him it was probably from laying down most of the day. He seemed to get comfortable and I fell sound asleep. He woke me up later crying that his legs hurt really bad. I got him some tylenol with codeine. After a little bit it seemed to help. I again crashed. Chris said he came up and Owen was 'Zoning out'. He told Chris that it was hard to see - his eyes were only partially open. Chris told him he was just half asleep. Then Owen went on to tell him what an awesome breakfast they had that day and was chit chatting away. A little drugged up I would say!
Monday, February 6, 2006 12:37 AM CST It must be us... we have the worst luck. The diagnostic center in Auburn is closed for 2 weeks for renovations. It WOULD have been fine to go there, but Owen will be done by the time they re-open. So off to Syracuse everyday!
Sunday, February 5, 2006 12:47 AM CST Another awesome start to our day! Owen 'ran' down the stairs this morning. I said 'Wow is that Owen?' He said 'Yep - can I have a raisin bagel with butter and cream cheese?' Thats my boy - eating from the get go!
Saturday, February 4, 2006 11:45 AM CST 9:06 PM
Friday, February 3, 2006 6:11 PM CST Another loooong day. We left the house at 8:00. He started with raisin toast at home this morning and then we stopped at McDonalds for an egg McMuffing, Sausage McMuffing, hash browns and orange juice. He ate one of the muffins on the way over and then fell sound asleep Owen got checked in pretty quick for weight, height, blood pressure etc. He has gained a whoppin 8 lbs in the last week!
Thursday, February 2, 2006 1:18 PM CST 6:15PM
Wednesday, February 1, 2006 5:07 AM CST 5:40PM
Tuesday, January 31, 2006 5:44 AM CST 5:48 PM
Monday, January 30, 2006 2:37 PM CST Owen does not feel any better today. He was up at 5:30 with the dry heaves. He ended up getting a bloody nose for all his heaves. He went back to bed and slept until 10:00. I stayed home as I was nervous of this continuing into day two and wanted to talk to the doctor. When he woke up I took his temperature (99.4) and called the doctor. They put me to the nurses call line where I had to leave my information for a call back since it was not an emergency. She did call back and said that she would get the okay from the doctor for an anti-nausea medicine. She said if he wasn't running a fever and his discomfort was tolerable then to leave him where he was. If either his pain became worse or he started a fever they would need to know. The nausea, numbness in his hands and feet, pain in his jaw and legs are all side effects. Last time he did not really experience alot of discomfort from the chemo until the radiation started. I hope this is not a sign of things to come... poor thing.
Sunday, January 29, 2006 1:29 PM CST Sunday January 29, 2006 7:10 PM
Saturday, January 28, 2006 2:30 PM CST Things went smoothly today. Owen was very nervous about getting his shots. He does not like shots and these Asparaginase (chemo) shots can be painful. That is why they give us the numbing cream to put on first. We were out of the house at 10 and there by 11. Owen was so excited because his beloved nurse Brooke was there. They got married when Owen was there a couple of years ago. However she was not working she was there due to problems with her baby. I do not have the answers as they are running tests but I spent some time with her talking. My heart goes out to her, it is a terrifying thing when you find out something may be wrong. She was feeling bad she couldn't be there for us, and didn't feel like being with Owen. What a sweetheart, worried about Owen seeing her upset and not being with him. We love you Brooke and are praying for you and you beautiful little boy. I hope everything works out. Friday, January 27, 2006 7:32 PM CST Wow what a long day. It started with me bringing Jake to school who was quite clingy and did not want me to go. I think after a week home with Mom made him a little withdrawn plus maybe a sense that things weren't quite right at home this week. Finally got out the door and off to Walmart to get Owen some tube shirts. He wears the sports bras (yes girl shirts but don't tell him), to keep his tubes tucked in nicely so we don't have to worry about them getting pulled. Arrived home at 10:15. We loaded up and off to the hospital.
Thursday, January 26, 2006 6:55 PM CST Owen returned to school today! He tried to conceal it last night but he was excited. Things went very well at school. The kids very happy to see him and Owen was willing to talk about his Leukemia. The teachers thought it made a big difference for the kids to see Owen. He got a headache shortly after lunch and went to Nurse Janes. He fell asleep and she let him sleep for 1 1/2 hours. So of course he 'forgot' his math homework because he missed math... we'll catch up Owen. They are learning to write letters. Owen wrote a letter to Mrs. Smith to ask for no homework on Monday. Always thinking he is!
Wednesday, January 25, 2006 6:34 PM CST Well we are home, with a whole lot to think about. As we well know things change daily. Things right now are pretty much the same as we were told before, as far as starting with the chemo treatment as outpatient. The difference now is they ARE recommending to repeat the transplant as the end of the 90 day protocol. The reason for transplant is due to the mixed lineage. They can not guarentee 100 percent that no cells are floating around his body, and that if there are any in his body some could be the mixed lineage. If it were to get into his bone marrow they can not be sure it would not start producing the mixed lineage. They do not have enough historical data due to the rarity of his leukemia to know if a mixed relapse would occur. The problem is he had such a rare leukemia and now such a rare relapse there is no expert on this.
Tuesday, January 24, 2006 1:22 PM CST Well a 100 ton weight has been lifted!!! We are doing a happy dance here! Although this is NOT the road we wanted to be traveling, if we have to go down it again this is the best scenario!
Monday, January 23, 2006 2:35 PM CST Finally some news! I couldn't take it anymore.. I tried calling the docs office back at 4:10, only to get the recording that the office was closed! I then called the answering service who told me that the office closes but then this is the time the doctors call patients back so to wait awhile. Tick Tick Tick now 6:00. I called back the answering service and they had the on-call doctor call me.
Thursday, January 19, 2006 8:15 PM CST Friday January 20,2006 8:30 PM
Wednesday, November 30, 2005 12:52 AM CST
Thursday, November 24, 2005 8:09 AM CST Happy Thanksgiving to you all!!
Wednesday, November 2, 2005 5:27 AM CST November 4, 2005
Thursday, October 20, 2005 5:46 AM CDT Well everything is going great here! Owen has been complaining everyday when he gets home from school that he isn't feeling well. He lays down for 1/2 hour and then feels fine. I think we have traced it to playing Game Boy in the car. So we want him to stop and see if that makes a difference. WOW - you would think I just stripped his world away - no more Game Boy!!!! He is willing to try though. Halloween is fast approaching and the excitement is building. We are planning on going to the ZooBoo this weekend, and another halloween party on Sunday, then a halloween skating party on tuesday! I'm exhausted already thinking about it. I will definately get some pics of the wonderful costumes. No One will know who Owen is this year, he finally changed characters after 5 years - thats right, no batman this year!
Saturday, September 24, 2005 8:41 AM CDT Owen had his doctor appt. on Monday the 19th. The doctor is thrilled with how well he is doing. The chance of any Graft VS Host Disease ( Jake and Owen bone marrow fighting) is basically none now. He never really had any - I guess him and Jake were very compatible. Too bad in real life they didn't fight! Brothers will be brothers I guess. They are running several blood tests and as soon as I know the results from that I will let you know. Some of the results should be back but no phone call can only mean good news! Owen does not have to go back to Rochester for a year now! Wow what a different place we are in now. August 26th was 2 years since Owen was diagnosed. We are coming up on his 2nd birthday for his transplant (NOv. 4th) We will be going to Syracuse in December or January. I have to make the appt., so for the most part it will by Syracuse docs every 6-8 months.
Tuesday, August 16, 2005 9:17 PM CDT Quick update August 30,2005 - Yesterday we had a doc appt. at Strong, Mom and I took all 3 boys so we could spend the afternoon at the zoo. Well we got a surprise when we got there that they had switched our appt to Sept 12th as the doc was out of state. They just left out the one detail of telling me!!! She said the doc had this planned for 6 months - I said yeah but we booked our appt last December - 8months ago! Oh well, we still had a great day at Bugaboo Creek for lunch (Owen's favorite) and then the zoo. I had to switch his appt to the 19th though as I have to go to Seattle the week of the 12th. So I will update you then!
Tuesday, July 26, 2005 5:36 AM CDT Hello all!!!
Sunday, April 10, 2005 7:58 AM CDT We are going through the sick house right now. Owen, Tyler and Jake all have strep! Owen started last sunday having a cough and sore throat. This cancelled his plans for going swimming at the rec center with a few friends which he was EXTREMELY mad about. However by Sunday night he was running a fever, and admitted I was right about him being sick. So he stayed home from school on monday. Tyler got sent home from school on monday for throwing up. He was fine the rest of the day, so I sent him back to school on tuesday. Owen stayed home again Tuesday, but he started throwing up. He continued through out the day until 1am poor thing. Jake also joined the 'party' at this point and started throwing up. Poor guys, they were so sad. Wednesday came and everyone was like brand new. Running, playing, happy as can be. So no doc, and thursday Owen went to school. Well he barely made it to school, he got off the bus heaving! So off I went and picked him up and straight to the docs. As soon as they saw his throat they knew it was strep. The doc asked him if his throat hurt and he said no, I told her that except for Sunday he had not complained of his throat. Then Owen said "Well it only hurts when I throw up or swallow..." Hmm well that pretty much covers all day! He has Holy Communion prep on Saturday from 1-4:30, which the doc said he would be on the med 48 hours and he would be feeling great by then so no problem. I decided since Tyler and Jake had shown signs of illnes this week and have been around Owen to have them tested too. And yes they were both positive!
Thursday, March 3, 2005 6:04 AM CST Nothing but glowing reports from our Doctor visit on Monday. It was a long day though. Owen's appointment was at 9:00 so we were on the road at 7:30. Spoke with the doctor for a long time just over concerns we have had. I brought up Owens bloody noses, the aches he has in his legs, stomach cramps, headaches, itchy skin, stessing easily about little things, trouble sleeping and nightmares. The doc did a thorough physical exam of him and did not see any signs of the leukemia. I told him we are not sure how much of his 'not feeling well' are real and how much are just because he doesn't want to do something. Most of his symptons occur before bed, or before school. We try to make Owen understand that he has to be really honest with us when he is not feeling well, it is the only way we can really be on the lookout for symptons of him getting sick again. He swears he is really not feeling well when he tells us and it is NOT because he doesn't want to go to school or bed... He told me he is afraid of his leukemia coming back and that he would die. Ouch - if that doesn't rip your heart out.
Thursday, February 3, 2005 5:15 AM CST Hello again,
Monday, January 10, 2005 7:38 PM CST Hello Everyone - hope you all had a great holiday season. We sure did, but it is nice to have things return to normal again. Well almost normal... we need a HUGE addition put on for all the new stuff. So much for everyone cutting down.
Tuesday, December 14, 2004 5:53 AM CST The holidays are approaching fast and believe it or not I am ready!!! Just a little more wrapping and I am all set. These flex days (every other monday off) are wonderful, and the stores are empty on mondays. Now my husband on the other hand... he'll be out there christmas eve!!
Wednesday, November 3, 2004 9:36 PM CST We had an awesome doctor visit on Monday!!
Friday, October 29, 2004 8:44 PM CDT Wow, we are home and what a fantastic adventure! How do I even start?
Wednesday, September 29, 2004 9:51 PM CDT Wow I certainly haven't written in a long time. Things have been going great and that is a good thing. We have been enjoying life and keeping very busy. Owen and Ty are doing great in school. Owen is very happy to be back to a normal life and having fun in school. The big second grade now, and that means homework! He has been very good about it though. Right after dinner everynight we sit down to do it. Sometimes he will do it while I am making dinner and just call me if he needs me but it is sooo easy he tells me. We'll see smarty, it will get harder!
Tuesday, August 31, 2004 7:41 PM CDT Owen is cleared for school! Not that we didn't think he would be, but you never know... He had a doc appt monday for a back to school checkup. Grandma Pat took him and boy was she mad!!! She ended up driving in that horrible downpour. She said her hands were gripped so tight on the wheel, Owen totally unaware to it all in the back seat. She said she was never so happy to see that parking garage. I feel bad especially as we all looked out the window at work going 'Wow' and I didn't even think that she would be driving right then.
Wednesday, August 25, 2004 5:29 AM CDT Hello all! Just thought I would give you a quick update to say everything is going well. Things have been busy here, or at least Owen's schedule is very busy! He had a 'minor' incident, but nothing with the leukemia. At a family party he went for a ride on a four wheeler and got a muffler burn on his ankle. It was quick bad and very soar! He says he is 'Daddy Jr' - lets all hope not! It put a damper on the rest of the day though as he couldn't go swimming anymore, which is where the kids spent most of the day and night. He was leaving on Monday for Darien Lake for 3 days and we were concerned about that since he wouldn't be able to go on the water rides or swimming. But luckily we still had his tube bandages. There is a clear plastic bandage that went over the top of his tubes that allowed him to take showers or swim, so we wrapped his leg in one of those and he was good to go. He says it worked great! He had a wonderful time, he loved the rollercoasters and water slides. He kept teasing Sharon, his friends mom, saying he was ready to go on Superman. Sharon didn't fall for it though she kept calling him on it and saying okay lets go... then he would laugh and say nooo I'm just kidding! Sharon said they had huge headaches by the time the came home because Shaun and Owen NEVER stop talking. They are exactly alike. Between the talking and the 'dilly-dally' way they are about everything.
Thursday, August 5, 2004 8:59 PM CDT The results are in.... and just perfect!!! I was beginning to sweat it out with them not calling. Then when I called the nurse and I kept playing phone tag and she didn't ever leave a message other than to call back. Today we finally connected and she said the doc would call me right back... I had a panic moment .. but he called right back and said it was just great. He said we won't have to repeat the test unless Owen had any kinds of trouble.. so even better news! We were suppose to repeat it ever 60-90 days but I guess that has changed for the better, or Rochester feels different.
Tuesday, July 27, 2004 12:31 AM CDT Hi everyone! Just wanted to quickly give you the thumbs up on Owen's bone marrow test. We don't have the official results yet they take a few days but the docs look at the slide shows everything is okay. His blood counts are also all in the normal ranges. So yeah!!! I don't know why, I have been so nervous about this. I think because he is so tired lately that I was terrified it was the "beginning" of a relapse even though nothing was coming back in the blood. Last year we figured his being tired was because of the constant 'go go go' of summer and I didn't want to make that same mistake again. I will update you when we have the official results!
Monday, July 12, 2004 8:55 PM CDT New Pics!
Friday, July 9, 2004 5:12 PM CDT Nothing but busy summer times going on at our house.
Saturday, June 26, 2004 8:59 PM CDT Owen finished up first grade with excellent report cards. He is right on target, missing 75% of the school year had no effect on his learning. He will be entering 2nd grade next year, no problem. He fell right back into school, his friends and everything. It was a wonderful feeling reading his report cards and hearing just how great things went. As he was going to school his last day I told him to sit in a corner and not play at the playground. As many of you remember he fell off the monkey bars last year with 15 minutes to go before getting on the bus, and broke his arm. Later we found out his arm probably broke because his bones were weak from the leukemia starting. Owen smiled as I told him to sit quietly this year and said "Yep, first I break my arm today and then I get Leukemia" HMMMMM - no that is not what we are planning for this summer!!!!
Friday, June 18, 2004 8:52 PM CDT We decided to take Owen to the docs because he has just been so tired lately. He is either bursting at the seems with energy or just exhausted. I just was feeling uneasy about it and called for a checkup. They took blood and everything checked out fine. So I guess just the changing weather, we are actually having some hot days for a change, and the busy summer schedule setting in are taking effect on him. Tyler has been dozing off almost everyday too, and Jake is taking extra long naps. But we didn't want to ignore ANY signs of trouble. But thankfully he is doing well.
Tuesday, June 8, 2004 10:11 AM CDT Just a quick hello to share some new photos with you. Owen was crown bear for the Union Springs Prom saturday night and he had a blast! He was a little shy at first because all the pretty girls were bigger than him and he just wasn't getting the right "feeling" for dancing. Thats a surprise since the majority of his "girlfriends" are older women! But then Tess arrived in time for the crowning. He was beaming! After he was all worried she had left but we found her dancing. Owen immediately went over, took her hands and didn't let go the rest of the night! He was quite the romantic, twirling her and just grinning ear to ear. He didn't want the night to end, but when the DJ unplugged the speakers and packed up we had to go.
Thursday, June 3, 2004 7:26 PM CDT New Pics, from Owens family birthday party. And one of Tyler at the Pathfinder village in Edmeston from this past weekend.
Monday, May 17, 2004 7:21 AM CDT We had an awesome birthday party!!! The indoor water park is really cool. Lots of swimming and things to play with. There is one big slide but yyou had to be 4'6" or be able to swim the length of the swim meet lap pool. I thought that was a little far, as Owen is a swimmer but that was a little bit too much for him right now. But rules are rules. It didn't really matter they had a great time. They get an hour in the swim area, then an hour in the party room. So I thought it was great and so did the kids. Although they wanted more swim time. Alot of them were late getting there because there was a prom or something going on in downtown and major traffic delays to get there. Owen already wants his party there next year too. Believe it or not Owen only got one present that he already has. I didn't think there was anything left to get him, and low and behold he got a ton of things he thought were awesome!!
Tuesday, May 11, 2004 8:54 PM CDT Well finally Sunshine!!! That certainly lifts the spirits, although ours are definately run high anyways. Owen is feeling great and looking great. He has gained 5 pounds since his last Rochester visit, up to 51 pounds now. He has gotten quite the appetite now and is always snacking, and eating his meals. They did a detail blood analysis of him to check his immune system. The results for that will not be back for a week or two though. They were thrilled with the way he looks and all his stats. He doesn't have to go back to there until November 4th, his one year "other" birthday. That is the day he was re-born with the transplant. We need to have another bone marrow test the end of this month, so I need to call Syracuse and get that scheduled.
Tuesday, April 27, 2004 5:34 AM CDT Thankyou for the wonderful poem on our guest page!!!! I don't know who sent it but it is wonderful!
Monday, April 12, 2004 7:18 PM CDT Happy Belated Easter to you all!!! We had a wonderful Easter weekend. Owen was a galavanter as usual. He spent the night at Grandma Pats on Thursday night. Then Friday after work we went to visit the Easter Bunny finally. Tyler loved him, Jake was cautious. He thought he was funny... just not too close! Owen just jumped right in with what he "needed". Then I took Owen to Papa Freds and Grandma Leas to spend Friday night. They took him to an Easter egg Hunt on Saturday morning. Owen learned that Easter Egg Hunts are not a time for Dilly Dallys! He only got 4 eggs. He thought the kids were crazy!!! He hung out with Papa and Grandma until 7:00 that night. He had to come home though because it was Easter eve!
Sunday, April 4, 2004 8:49 PM CDT As they say... no news is good news. Things have been quiet and it feels good. Owen has a little bit of a cold right now, as well as Ty and Jake so hopefully it won't turn into anything more.
Tuesday, March 30, 2004 6:48 PM CST Owen survived the weekend without incident which is surprising considering the rest of the house has been sick. It started with Tyler on Tuesday, Mom on Wednesday, Steve on Thursday, Me on Friday, and Chris on Saturday. So far Jake and Owen have escaped. It only lasts 24 hours but it is a NASTY 24 hour bug!!!
Thursday, March 25, 2004 5:06 PM CST Owen is feeling pretty much back to normal and it is wonderful!! He had diahrea most of yesterday, but today he was fine. All of his swelling is completely gone and he is looking great. He actually even weighed in at 49lbs today at the doc, which is up from the 46 he was. Hopefully some of this is real weight not still fluid retention. He ate out of control yesterday and is continuing that today. He needs to put on some weight. That is one thing about when he was so puffed up, we couldn't see his skinny bones poking out!
Tuesday, March 23, 2004 12:30 AM CST We are coming home! They were able to put a name tothe virus that was growing in his culture. Don't ask me what it was, I am having them write it down so I will have it to tell the doc in rochester on thursday. But it was definately a virus/ bacteria that grows from an infection in the line, they know of no other way to pick it up, unless Owen was drinking fish tank water and he says he wasn't. Monday, March 22, 2004 7:29 AM They have definately determined it is a virus. They do not believe it is the rota virus I had talked about. But they will know for sure once his stool specimin comes back this morning. His blood culture has grown these 'Gram negative rods' which signifies he does have a virus growing. They don't know which one though. I asked what this meant and how serious. She said she believed the worse was over, they had his BP in control and knew what anitibiotic to treat it with so now it was just a matter of getting a few days of it in him. But she said Owen had white blood cells and was pretty stable going into this so that was good, she said imagine if it knocked him this hard what it could do to a child when they were low from chemo! That is why they like to get the tubes out as soon as they don't really need them. They can't be 100 ure it was the tubes, but it was time to come out, we were looking at April for removal anyways.
Sunday, March 21, 2004 8:15 AM CST I wish I could be writing to say what a great weekend we had.... unfortunately we came over to the ER at 1 am friday and are still here.
Thursday, March 18, 2004 8:16 PM CST More Pics!
Friday, March 12, 2004 7:13 PM CST Friday March 12,2004 - More school pics. Things are going well, Owen is loving going to school. He got a HUGE welcome back on Thursday his first day back on the morning bus. He seems to be holding up well, and we are already going to increase him to noon next week. He has monday off for a doc appt. I will be going to Chicago on Monday - Wednesday for vacation, oops I mean work, so I may not get to update the site after his doc appt. My flight is at 3:00.
Wednesday, March 10, 2004 8:32 PM CST Pics from his day at school! I will put more out there over the next couple of days, I am limited to 3 at a time.
Monday, March 8, 2004 7:22 PM CST Another great doc checkup. They can still see the mono cells in his bloodwork, but the fact that he is no longer running a fever shows it is getting better. He is also not take a nap any more. He does get hyper or very restless still sometimes which can be from the mono and being over tired, but all in all he is handling it just fine. The doc let Owen look at his cells under the microscope too today. That was really cool, of course they all looked the same to us! They did his blood draw with a needle again! Owen handled it very well though, he said he has learned as long as he is not paying attention it is not that bad. We did find out though they couldn't have taken it through his tubes. The receptionist just assumed since we went to the lab last week that we need to do that every week. But from now on they will do the blood draws from the tubes. We are going back next Monday, they still want to keep a tight watch on his cells until the mono has gone. Monday, March 1, 2004 8:00 PM CST It was a good visit to the docs today. First off we had to head down to the lab for blood work. Yep, they had to take it with a needle! I didn't let Owen know that until they started to tie the elastic around his arm. His eyes got HUGE!! No numbing cream this time! He told him it was okay this guy was really good at it and didn't need the numbing cream. I read to Owen while he did it, and it was a piece of cake! Owen said it only hurt a little bit more than with the numbing cream. Of course he milked it the rest of the day... he was up for an academy award, to bad he missed the Oscars the night before. He couldn't do any writing today, his arm... so we did lots of reading instead!
Thursday, February 26, 2004 9:00 PM CST Today was a pretty good day... no bone marrow test. So for Owen it was a great day! They decided since they found out Owen had mono, the bone marrow would not show them anything. It would still give them high results, and they would be unreliable as far as knowing anything with the leukemia. But so far all tests show no leukemia cells and seem to point to his fevers and blood inconsistencies are due to that. The doctor did call and say there was a particularly high number in his blood counts today that he wants to watch. I don't know what exactly it was, he talked to Chris. He just said it normally shows higher in bone marrow transplants from an unrelated or different sex donor. So he doesn't believe it was anything to be concerned with. He will have syracuse retest it on Monday. Wednesday, February 25, 2004 11:17 AM CST Well no fever yesterday means we are going home today! The EBV test, mono, came back positive so at least they have a reason for our fevers now. The immature cells are still up, but his blood looks good. We are still headed to Rochester tomorrow for another bone marrow and check up. Then back here on monday for another checkup. Hopefully things will continue to look good. Tuesday, February 24, 2004 12:40 AM CST Well no news is good news right? We still know nothing. The quick CMV test came back negative so that is good, but it still leaves us wondering what is going on. He spiked a temp last night at 7:00, 38.8 = 101.8 This has been the highest he ever seems to get, or at least the highest till we catch it and give him tylenol. The doc is going to keep us in the hospital. He just feels this is the best place until they detect where this fever keeps coming from. We will leave from here thursday morning and go straight to Rochester for the bone marrow aspiration. We may know more from some of the other tests later today. I will keep you posted if we learn anything
Monday, February 23, 2004 11:09 AM CST Hello everyone, I am not liking having to update our site once aday again! It was nice to just share the news that he was doing great! But I guess we knew we would hit some bumps along the way, but I think we are just never really prepared to hit them! Sunday, February 22, 2004 10:56 AM CST We have had a little bit of good news. The immature cells or blasts they are seeing do NOT look the same as the immature cells he developed when he was diagnosed with Leukemia. This gives them hope that it is not a relapse. They will be doing another bone marrow sample tomorrow and that will tell them for sure whether it is or not. Saturday, February 21, 2004 11:07 AM CST Well I would like to say the fevers ended up being nothing but unfortunately our day on friday went from bad to worse. We got a call from the doc on friday saying his more detailed bone marrow tests showed a higher percentage of immature cells than they like to see. It is normal to have immature cells because they develop into your regular cells. However if the number is high something is going on. They don't know if it is leukemia related or it possibly could be because of the fevers. They wanted to repeat the bone marrow in Rochester on Thursday. Needless to say I was a total wreck and left work. Owen had not run a fever since thursday afternoon so we were hoping it was over. However at 2:00 it started going up. By 3:00 it was 101.8 I called the doc and he told us to come over to the ER so they could get some cultures.
Monday, February 16, 2004 6:48 PM CST Thursday:
Monday, February 9, 2004 1:33 PM CST We had our first visit to Syracuse today!!! Everyone was excited to see Owen again. He even wanted to go up to 7H to visit, which is where we "lived" for a month back in August and September. The doc was all smiles and couldn't believe we are off the cyclosporine already and just looking great. We will be going back probably next monday for another bone marrow aspiration. This is where they will test a piece of his marrow to see what is going on in there. Friday, February 6, 2004 5:17 AM CST Owen continues to do great. He has had no problems after being removed from the cyclosporine. So we did not have to go to the docs this week. We will start by going back to Syracuse on Monday.
Tuesday, February 3, 2004 5:59 AM CST Yeah no more cyclosporine!!! Owen is so excited. He only has to take his pudding medicine now everyday so that is a piece of cake. The pudding has his magnesium in it. That should only be a couple more weeks. Then Sat. and Sun. he has bactrim for pneumonia prevention. That med will be around for about a year. So as long as we see no signs of Graft vs Host we have no doc appt this week! Wow it has been along road, and still a long one to go, but it seems to be alot less bumpy now. Owen has quite a bit of hair on his body. This is caused from the cyclosporine. Daddy had to shave his side burns on friday because he got gum in one of them. Poor O. He didn't seem to mind, but he wouldn't let him trim the hair on his ears. Let he be Daddy! Thursday, January 29, 2004 7:24 PM CST It was a good day at the docs. The doc is just thrilled with the way Owen looks. He says it is highly unlikely he will develop the acute Graft vs Host disease at this point. We will be off the cyclosporine medicine after this weekend and he may get a mild reaction but he even doubts that. After that will be a time when he could develop the chronic Graft vs Host disease. We will have to be on the look out for that for a couple of months. He will continue to take his magnesium for a couple more weeks to get his kidneys back up to regular level which was lowered due to the cyclosporine. His immune system will slowly come back once he is off the cyclosporine. Although his white blood count is normal it is the composition of it that is not normal. That will take about 6 months or more to come back. The one medicine he will have to take for 2 days a week for about a year will help him prevent getting pneumonia, which is something he can not fight against yet. If Owen continues to look this good by next tuesday we will not need to go back to the docs next thursday. We will not have to go back to rochester until the end of February. We go to Syracuse on the 9th and this will become our normal doc visits with periodic ones to rochester.
Sunday, January 25, 2004 3:47 PM CST New Pics!
Thursday, January 22, 2004 9:20 PM CST Another GREAT doc visit. Owen is feeling very good. Yesterday he was on an eating craze which is great because he looks so skinny to us. He eats like a bird some days and you can't stop him others. He is remaining steady at 46.5 lbs so as long as he doesn't lose any weight I'll take that for now. The doc says his counts are still looking good. No signs of the Graft VS Host yet. We take his cyclosporine down to .25ml both morning and night this monday. Hold at that for a week and we are DONE! Owen is so excited only 10 more days of the yucky stuff. After he gets off this his immune system will start to come back. He has white blood cells which will fight infections, but not really an immune system for fighting things like a virus or flu.... The cyclosporine is an immune suppressant so that Jake could make his way into him with out Owen's system wanting to kick him out. His immune system will take about 6 months or longer to totally come back that is why he still will not be able to go to school. However we don't have to wait until it is fully back to go either. Once the winter has calmed down and most of the viral illnesses have passed he will be able to go. We will rely on the school to let us know if there is a lot of kids sick so we can keep Owen home and away from it. Monday, January 19, 2004 7:00 AM CST Owen had a good weekend, and Jake is back to 90mph! We just have to hope Owen and Tyler don't end up with it. So far so good.
Thursday, January 15, 2004 8:45 PM CST We are all done with chemo!!!!! Today was a great day. It wasn't too bad driving up until I got off the thruway. 390 was a mess and we were only going 20-30 miles an hour with lots of stops. There was a couple of accidents. So needless to say we were late, but so was everyone else that day too. So we went right in when we got there. Owen was very happy and chatty with the doctor. He was so shocked because Owen is usually still half asleep. He has been getting to bed at a regular bed time though now so being awake at 10:00 isn' so bad. He still fell right asleep with just a little med. He woke up very fast today. He even asked the doctor if we could take some of that medicine home with him so he could fall asleep easier at night time! I am all for that, to bad they can't really do it.
Tuesday, January 13, 2004 6:17 PM CST Owen is still feeling good, and poor Jake is just really under the weather. He has had a fever and aches for four days now. We took him to the doctor but it looks like it is viral. All other tests came back negative and he doesn't appear to have any other symptons. He'll just have to ride this one out, and hopefully Owen will not get it next! It seems to weird to have Jake so quiet and just wanting to cuddle, usually you can't get him to stop. Sunday, January 11, 2004 7:48 PM CST Owen had a good weekend. Jake is sick and running a fever of 102 on Saturday and 101 today. Yesterday he was running around once the Motrin kicked in, but today he just wanted to be held all day. Hopefully Owen gave HIM his cold, and this is something Jake will pass on to Owen. I am doing my best to keep Owen away from Jake but unfortunately with them in the same house the germs are probably everywhere.
Thursday, January 8, 2004 8:39 PM CST Owen had a good doctor visit. Nothing big to report. His last blood draw (last thursday) showed his white blood count is down to 2.8 (normal is 4.5). The doc said this is probably due to his cold last week. They took his blood today and hopefully that will show his counts coming back up again.
Tuesday, January 6, 2004 7:53 PM CST Owen continues to feel well. He realized last night that I forgot to take him to the doc yesterday! When I told him we only had to go once a week now he was excited. You don't think they pay too much attention to what is going on just go when they are told to go ... but I guess he really did know our schedule! He is going to see Peter Pan tomorrow with Papa Fred, well as long as he takes cyclosporine tonight without a fight! Of course he was horrified when I asked him if he had enough money to go. Sunday, January 4, 2004 9:36 PM CST New Pics!
Friday, January 2, 2004 8:44 PM CST We had another good day at the docs. Owen was a little tired when we first got there. I rolled him out of bed at 8:00 to head off. We went to the play room because they weren't quite ready for him yet. That of course he woke up for! Chemo went well. Only one more to go! After he was alot groggier than usual but he woke up quickly from the local drug he is given so I think he was still feeling the effects of that.
Thursday, January 1, 2004 7:46 PM CST Happy New Year everyone!!! We are definately looking forward to a brand new year and for a GOOD year.
Monday, December 29, 2003 8:20 PM CST Theres new pics....finally. You can see Owens hair is really starting to come in!
Saturday, December 27, 2003 10:29 PM CST Well its been a few days since I have updated you. I am still trying to find the floor of my house from all the presents Santa and the Grandparents bought (okay I bought some too!) Christmas was very nice, exhausting and a little over whelming for Tyler and Jake. Tyler would just walk away from all the presents - he was done. Go play or watch some TV then come back when he was ready. Jake just ran, and ran, and ran from room to room trying to figure out what all this stuff was. Now Owen is a pro by now, he couldn't rip through everything fast enough and look for the next thing! He got a ton of superhero stuff. New Justice League figures, new Batman clothes, Spiderman bop bag and chair and alarm clock, the "real" Bat signal light, and a bunch of Yu-Gi-Oh stuff... and the rest is a blur...you get the picture he wasn't lacking. Wednesday, December 24, 2003 3:41 PM CST Owen made it through the night without his fever returning. He was still running above normal (99-99.3) but no fever. We went to the docs and first he apologized for the mass confusion monday morning. He said he his putting new procedures in place to prevent that from ever happening again. He gave me his home phone in case I ever need him and can't get ahold of anyone. So that made me feel alot better. He checked Owen over and said he heard a little crackle in his lungs, but it wasn't constant. He said he wasn't concerned with it, his xrays looked good and he thought it might be part of this viral infection. He said this would be the last antibiotic Owen would need because everything was pointing to it being viral and an antibiotic will do nothing for that. We need to just keep an eye on Owen, but this infection could continue for another 24-36 hours. Tuesday, December 23, 2003 9:21 PM CST Well last night was a nightmare. When I put Owen to bed at 10:30 he felt a little warm to me. I took his temp and it was 99. He was a little achy so I was nervous something was happening. I kept checking his temp and at 11:30 we hit the magic number 100.5 to call the doc. I decided to wait a little bit to see if it went down because over the last hour it had gone up and down before it hit the 100.5 Well at midnight it was creeping up to the 101 and wasn't going back down at all. I called the on call number and they said they would page the doc. Well 40 minutes went by and no call. I called back and she said she would re-page the doc. Another 40 minutes went by and no call. Owen was now bouncing between 101.4 and 101.7 I called back and she said she didn't know why no one was calling back so she was going to pass me over to the onocology on call line and they could help me. When I talked to this lady she was confused when I asked for the Bone Marrow Transplant on call. She told me this page service was for hematology and onocology, which was for cancer patients. I said we ARE cancer patients but we also had a BMT and needed the physician on call for that. She didn't know who to call for me so she said she would have the nurse call me. Needless to say another 30 minutes went by and no call. It is now 2 am. I called back the original on call office and told her my son was now running a very high temp and I needed to talk to a doc NOW. I was on the verge of hysteria. She tried to call the doc at home and said she got that is was an invalid number. I said can't you call a different doctor and listed off all of the docs Owen sees. She told me she didn't know what to do for me if the doc on call wasn't calling me back. I was a basket case. I told her to put me through to the 8th floor - the bone marrow transplant unit. She did and I spoke with one of Owen's nurses. She realized I was a mess at this point and told me she would get someone for us and to relax. Thank you for the 8th floor!!! A doc called me finally but he was from adult onocology so he didn't know Owen. But he told me we needed to be seen right away. He said we could go to our local emergency room, he would call and tell them what blood draws and cultures he needed. I said our emergency room wouldn't have a clue about cancer. He said he just wanted to get the initial blood draws. I asked if they would even know about his hickman (the tubes that are inplanted in him) to access his blood. He said he didn't know. I told him I was not going to subject Owen to needle blood draws. He said if I preferred to come to Rochester. So that is what I did. Sorry if anyone works at Auburn Hospital but I was not comfortable putting Owen in the hands of people who really don't know or deal with cancer patients. So at 3 am we headed off to Rochester. They were waiting for us at the ER and took us right in. They did several blood draws for cultures and counts. Took a chest xray and checked him over. At 6am he was able to get Tylenol for the fever. It was now at 102.3 Owen thankfully slept through most of it, except the xray. He seemed really scared about the xray this time. I think it was because he was half asleep and had so many people all over him. I laid down about 6:30 in his room on the xtra bed and I think I passed right out. Next thing the doc was waking me up at 8:30. So far all cultures were negative, his counts still looked good, so the fever was probably viral. I hate that word viral, which basically means they don't see a source. The cultures will continue to grow until chrismas day. They gave him an IV anitbiotic and we have to go back tomorrow to get another dose of it. The doc apoligized for the mess I had last night for getting a doctor. She said the oncall line had the wrong doctor listed. That doc was out of town. I still think some sort of back up should be in place so another doc can be paged. We see the head of onocology tomorrow for a check up and the IV and I will be sure to tell him how frustrated I was. We were released at 10:00 and headed home. Monday, December 22, 2003 10:23 PM CST The doctor visit went well today. Owen didn't get sick on the way there or home! After we were there a little bit he started getting a headache and laid down saying he didn't feel well. I went and got him some food and after he ate he felt fine, so I think that was a hunger headache. They reduced his cyclosporine level, which is the med that prevents him and Jakes bone marrow from fighting. They will continue to reduce this over the next several weeks if he has no reactions. Owen can't wait because that means getting rid of a few medicines when that one is done. I told him one of his meds that he only takes twice a day 2 days a week (Sat & Sun) he will have to take for a year. His eyes lit up and he was all happy because this year was almost over!! I had to burst his bubble and told him no meaning a years time so until next christmas. We will just have to watch Owen because he has gotten sick the last 2 nights after taking his cyclosporine. Tonight he did fine, he got his reduced dosage though so maybe he was just getting too much. The blood work they took today should show if his level was getting to high.
Sunday, December 21, 2003 9:30 PM CST Well the big visit with Santa was a success! Although Owen was very quiet. He always gets so timid with Santa. Yes that's right I am talking about Owen and believe it or not he does get shy sometimes. He seemed very happy that Santa had received his letter and knew what he wanted, although he had to help Santa with saying "Yu-Gi-Oh". Friday, December 19, 2003 8:32 PM CST Owen is still a little sore today. Some is real, some is exaggerated - his manhood his coming out with the whine on pain. But other than that he is feeling good, much better tonight than he was this morning and afternoon.
Thursday, December 18, 2003 9:10 PM CST Well all in all things went pretty smooth today. Owen did wake up just before we got to the hospital and said he didn't feel well. We made it to the docs office, where he immediately laid down on the bench in the waiting room. They got him in and back to a reclining chair pretty quick and he started feeling a little better. So he never did get sick, but it does seem more and more that it is motion sickness. They said we could try giving him zofran before coming, but I am not so sure I want to give him any more meds. I will have to think about that.
Wednesday, December 17, 2003 8:02 PM CST Well another good day. Although Owen has been sleeping alot. Yesterday he look a nap from 6-8 at night and I didn't think much of it. But he did that again tonight. He was really fighting eating dinner because it was not what he wanted. So I told him to go sit on the couch until he was ready to at least "try" it before he decided he didn't like it. He went and laid down and was out like instantly. He is still asleep now so he has had another 2 hour nap. Tuesday, December 16, 2003 8:29 PM CST Owen continues to feel well. I talked to the docs office today to make sure we did not have to make up the monday visit we missed due to the weather. It got quite confusing but in the end we do not have to go and we are going on Thursday for the chemo and bone marrow test. They will draw blood then also. She said we might look at possibly changing his monday visits to a home nurse to take his blood so we do not have to go to rochester then. That would be nice but I am still not convinced she understood we are just recently out and it is also a checkup by the doc. We'll see. Monday, December 15, 2003 9:18 PM CST Well Owen has been feeling good all weekend. We were suppose to go to the docs today. We were suppose to be there at 9:00 this morning, but after the storm yesterday I was not going to drive to Rochester. I figured we would have had to drive for 3 hours to get there! And if Owen is getting motion sickness a longer drive was not going to be fun. They did not reschedule him for a different day. I thought that was weird and told the receptionist that they are suppose to see him twice a week and our next appt is on Friday. She said that she would check with the doc and call me back if they needed us to come another time. I didn't hear back but I think I will call the my nurse coordinator tomorrow because that just seems weird to me, expecially with the way Owen has been getting sick. Our next appt was moved to Friday instead of Thursday because they decided to do the bone marrow test also and the slot they had for the treatment room wasn't long enough to do both the chemo and the bone marrow. Saturday, December 13, 2003 10:24 PM CST I just wanted to check in real quick and let everyone know that Owen had a good day today. He wasn't sick at all. He did however get playstation and tv taken away from him for fighting his medicine so bad this morning. It was mostly the cyclosporine. But then Mr. Jorgenson showed up for math lessions and Owen was able to take it! Math lessions and play time went well - Mr. Jorgenson is a great playmate! But he still had lost his privleges until later in the day when Daddy allowed him to have tv again. Friday, December 12, 2003 9:10 PM CST Well another trip to the docs and another long day at the hospital. It did not go smoothly. We were almost there when Owen woke up in the back screaming that his head hurt really bad. I told him we were just a couple minutes away. He just kept screaming and crying. There was a wheelchair in the garage so I put him in that and rushed him in. He layed down on a bench in the waiting room while I got us checked in. He seemed better once he was laying down. Then they called us in, he said his head hurt again while he was walking. He layed down in the chair while they got him hooked up to his antibiotic. He just layed and rested, then he wanted something to eat. So I went and got him some food but he said he was too tired to eat, and just dozed. His med was only about 1/2 hour long so after the nurse got him unhooked he sat up and said he didn't feel good and got sick. Once he was done he said he felt better and wanted to eat. Once he ate a little we got ready to leave. He went and found Colleen the child life therapist ( the fun lady who has all the cool games) and said good bye to her. He seemed fine. Thursday, December 11, 2003 7:43 PM CST Owen had his doctor appt today. It started out well. He was goofing around with the doctor and feeling fine. He thought Owen looked great in person and on paper. He wanted to take more blood to see if he needed a transfusion today, so we were going to have to wait around for an hour for the results to see if he would need it. We went down to the outpatient area to get the blood drawn and hang out. While the nurse was flushing his tube line and drawing blood Owen's leg started shaking and twitching, then his hand did. He started to moan and say he didn't feel so good. The nurse stopped and they got a blood pressure right away - it was normal. As she started to continue the flush he started thowing up. He threw up several times and then laid back and rested for a little bit. Then he felt fine. They continued to take blood pressures every 15 minutes. The doctor was called and he wanted them to take more blood for cultures to see if he has some sort of bacteria or infection. The doctor says he does not believe it is nerves because his blood pressure would have been up too, and his shaking was not a nervous shake but and uncontrolled siezure type shake. He believes there may be some sort of infection around his hickman tube line and while they were accessing it, it was disturbed and caused him to not feel well. They gave him an antibiotic through his tubes, and they kept us there till later afternoon to watch him. We have to go back tomorrow to get another dose of the antibiotic, and hopefully they will have some info on whether he has an infection. If he does they will put him on a week to ten day IV antibiotic so we will have to get an IV here at home and get trained on it. Hopefully NOT!! He slept the whole way home, and has felt fine since. So seems like something is going on, I just hope they figure it out soon. Tuesday, December 9, 2003 7:39 PM CST Owen actually went to bed early for him after sleeping all day. He was sound asleep by 11:15 and slept until 11:00 this morning! He woke up his normal self. No problems all day. He ate, drank and played quite a bit. So what ever was bothering him yesterday went away - a big relief. The doc called to check on him, and said his blood tests all came back normal. He said they are going to do his bone marrow next Thursday when he gets his next dose of chemo. That will be day 44 post transplant. He still doubts they will know anything as far as any sign of leukemia coming back, it would be too early, but they just want to take a peek and see what is going on, make sure it is Jakes marrow producing his blood. This Thursday he will probably need a blood transfusion. His hemocrit is at 21 and they give a transfusion when it goes to 20. The red blood cells which makes up the hemocrit are the last of the counts to get rebuilt as his counts come up. They will check him before they do it but chances are pretty good he will need it. So it will be another long day at the hospital. A transfusion takes 4 hours. But at least this time we will be prepared and hopefully it will be a nice relaxing day. Monday, December 8, 2003 8:53 PM CST New Pics!
Sunday, December 7, 2003 8:27 PM CST Well our first weekend at home went very well. Things are very busy here and our house is a little upside down as we try and get our bearings and remember what it is like to live at home. I forgot how much laundry five people generate!! Friday, December 5, 2003 4:13 PM CST It sure is great being home. We had a good night. Owen is a little stuffy but feels fine otherwise we will have to keep an eye on that. Thursday, December 4, 2003 11:25 AM CST New Pics out there from our private Holiday Party. :-)
Wednesday, December 3, 2003 5:54 PM CST Oh the power of Playstation..... Owen took his medicine last night and this morning no problem. When I need him to take a break to eat, or do his school work, take a bath, they are all done with no problem. Of course I now have the power of taking playstation away, now that he really feels like home!! Tuesday, December 2, 2003 3:06 PM CST New Pics Monday, December 1, 2003 7:46 PM CST More Thanksgiving day pics.
Sunday, November 30, 2003 2:36 PM CST I just wanted to do a quick update for you. We survived the night fine. No more fevers and Owen was feeling well. I took him back to the hospital this morning to have more blood drawn to re-check him today. His white blood count was down to 3.9 from the 4.7 it was yesterday and the lympocyte count was down from the 72 last night to 46. So that all seems to point to the skipped doses of cyclosporine caused the graft VS host disease to flair up, cause his fever and the really big increase in his counts. We did not take the cyclosporine this morning, they are still trying to find that happy medium between too much which is toxic but enough to suppress the Graft VS Host. He did have it last night and will again tonight. They will re-check him again tomorrow.
Saturday, November 29, 2003 9:12 PM CST Well we had a little bit of a heart thumper today. Owen ran a fever and we spent 3 1/2 hours at the Emergency room. Before I say anymore I want to say he is feeling good and we are at the RMD house, he is in the tub as we speak. Friday, November 28, 2003 10:22 AM CST Hope everyone had a great Thanksgiving! We sure did. It started out to a slow start. I had to roll Owen out of bed at 7:00 because we had to go to the hospital at 7:30 for IV fluids. I carried Owen to the car, to the hospital room, plopped him in the chair where they hooked him up and watched him continue to sleep. We left at 9:30 and he was just starting to wake up as I carried him back out to the car. Back at the Ronald McDonald house Papa Fred, Grandma Lea, Sam and Nicole showed up for a visit. Owen played for a little bit and then became quiet, and layed down not feeling well. Jake, Tyler and Grandma Pat showed up and this helped perk him for a bit but he just wanted to lay down. Grandma Bonnie came with snacks and we thought maybe he was just hungry but he ate a few crackers and that didn't do anything. Friday, November 28, 2003 10:22 AM CST Hope everyone had a great Thanksgiving! We sure did. It started out to a slow start. I had to roll Owen out of bed at 7:00 because we had to go to the hospital at 7:30 for IV fluids. I carried Owen to the car, to the hospital room, plopped him in the chair where they hooked him up and watched him continue to sleep. We left at 9:30 and he was just starting to wake up as I carried him back out to the car. Back at the Ronald McDonald house Papa Fred, Grandma Lea, Sam and Nicole showed up for a visit. Owen played for a little bit and then became quiet, and layed down not feeling well. Jake, Tyler and Grandma Pat showed up and this helped perk him for a bit but he just wanted to lay down. Grandma Bonnie came with snacks and we thought maybe he was just hungry but he ate a few crackers and that didn't do anything. Wednesday, November 26, 2003 6:34 PM CST Yeah we made it!!! We are officially at the Ronald McDonald house and settled in. We left the hospital at 3:30. A little later than we thought but Owen had to get some IV fluids, his drinking was not very good the day before and they don't want him getting dehydrated. He needs to flush all those meds with lots of liquids. So we have to go back tomorrow at 7:30 more more IV fluids, and then Friday we will get some more, and our blood work and a check up. Hopefully we will have him back up to speed on fluids by then. Otherwise they will look at getting us an IV pump for here to run for 8 hours overnight. We would all rather just push the fluids and not have to deal with the IV. Tuesday, November 25, 2003 3:47 PM CST We got the best news! Owens total blood count, his ANC, is 559 which is over the 500 mark, and we will get discharged tomorrow! They will recheck his blood in the morning, and if everything checks out and there are no problems we should be out by noon. We went over the long list of "what to look for" as far as problems, concerns, when to call the doc, how to take care of Owen, his meds...etc. There is a lot to know and do but we are feeling confident about leaving (as well as nervous). This is why we are only being discharged to the Ronald McDonald house. The docs like you real close at the start of your dismissal to keep an eye on Owen to make sure he stays well. We will be kept at the Ronald McDonald house 1-2 weeks. Once they feel his counts are up even more, and looking really good we will be released to go home home.
Monday, November 24, 2003 8:02 PM CST New pics!
Sunday, November 23, 2003 4:58 PM CST Owen woke up today with a very deep barky cough. He has had a cough and been stuffy for a few days but it is usually more in the morning or late at night but nothing really bad. They took a chest xray which came back fine. They also took a sample from his nose to check for a virus, we will have to wait to here the results on that. But by late morning he was hardly coughing or sniffling at all, it does get real dry in here at night because we turn the heat up. It gets cool in here but then in the night somewhere it gets warmer and then because the heat is up it gets stuffy. I should have Owen turn the heat down at 2:00 before he goes to sleep! Sounds like they are going to discontinue his IV fluids at night, he is getting enough in during the day that they don't need to suplement him anymore, but he has to keep going and increase a little bit. Saturday, November 22, 2003 4:38 PM CST New Pictures!
Friday, November 21, 2003 11:00 AM CST Just a quick update before I leave for home. Owens counts are coming up great! His white blood count is .7 (1.1 is the low end of normal) and his ANC has come up to 161 and 500 is our magic number. So his blood is doing what it is suppose to do, now we just need Owen to do his part in eating and drinking. He is not eating enough for them to feel comfortable in discharging him. The nurse says we are looking at "days" in dismissal but not until he is eating more. So we now have the push to eat. We will be making sure Owen eats at least 3 meals a day plus some snacks and all game cube, game boy, tv, whatever is off until he eats. Mommy and Daddy are ready to go and so is everyone else so we have to put on the "heat" so we can leave. So everyone help us out and tell Owen how much he needs to eat so we can come home and see everyone again!!! Thursday, November 20, 2003 5:25 PM CST New Pics from today.
Wednesday, November 19, 2003 9:45 PM CST Today was off to a rocky start. Owen was doing alot of coughing and ending up getting sick. It was mostly flem, even though his lungs sounded clear. He didn't feel good and didn't want to eat. Finally around 2 he ate some icecream. He still kept saying he didn't feel good. We told him it was probably because he wasn't eating alot and was weak. He took a shower and then had some chocalate milk. He still wasn't feeling great and just wanted to lay around. Then he got sick again at 4:30. He started feeling warm and had a little temp, 37.5 which is 99.5 about a half out later it was up to 38.1 = 100.7 Tuesday, November 18, 2003 8:56 PM CST A couple more self-timer pics by Owen are out there. Monday, November 17, 2003 8:08 PM CST More new pictures are out there. Owen took all of these with the self timer on the camera. He has become quite the "Peter Parker".
Sunday, November 16, 2003 4:58 PM CST New Photos!
Saturday, November 15, 2003 5:55 PM CST Sorry this is so delayed. I actually took a much needed break with one of my other sons - Tyler. He came up for the day and night and we had a great time. He was very protective of me at first, no one at the Ronald McDonald house could talk to me, he would scream and point for them to leave. We spent alot of time snuggling, and playing. Later in the afternoon he got bored with the house, so I took him to Wegmans to grab some stuff, and he loved all the Christmas lights and animations up. So then we went to Toys R Us for 2 1/2 hours to play! I did spend some money on xmas pj's. But they had a bounce house set up which he spent 40 minutes in, we played with the train set, hide-n-seek in the clothes - until he found it to be funny to take off running - I don't need to lose him in Rochester. But if you are every looking for a good place to entertain the kids, this worked very well! :-) We had a good night and a nice time playing at the house today. Daddy took him home around noon. He was very sad to go, Chris said he looked real sad when he got him back to Grandma's. You forget how hard it is on the other kids, their lives have been turned upside down too. Thursday, November 13, 2003 8:05 PM CST Another great day. No eating but we'll tackle that detail later as his sores get better. The doctor said he feels foolish coming in each day because he has nothing to say, Owen is doing great. He doesn't want to jinx us but this is just unheard of how well he is doing so fast. We really don't mind him not having any issues though!!!! Hopefully just a couple more days for the mouth sores. Possibly by the beginning of next week his white blood count could start, but we may not see it in the numbers because they will be immediately fighting the sores. Wednesday, November 12, 2003 7:49 PM CST There are pictures from Owen's Day on the web at http://freepages.genealogy.rootsweb.com/~springport/pictures62/owensdayweb
Tuesday, November 11, 2003 8:53 PM CST No fevers still today!!! Which the doctor says is just amazing! Unfortunately the mouth sores are getting worse. You can actually see them under his tongue now. We tried giving him morphine today to get him to eat but that didn't work everything bothered his tongue. So then we gave him a numbing medicine that I brushed onto his tongue. That allowed him to get the food in his mouth but it hurt when he swallowed. So unfortunately he didn't eat anything today. He is getting most of his calorie intake through the feeding tube but we would like him to eat something. He just got really upset whenever we approached him on eating, so we are backing off for now.
Monday, November 10, 2003 8:59 PM CST We thought we might be in for a bad day today. Owen woke up happy but within no time was complaining of his stomach hurting, and throat. His legs started cramping, and he just dozed on and off. He woke up around 3:00 and was really upset and saying he hurt. We gave him some morphine and this mostly just made him spacey and content to lay there and he was no longer in pain. He refused to eat anything.
Sunday, November 9, 2003 6:32 PM CST Owens throat sores are getting worse. He keeps a cup of ice chips close by to eat. Although for the kid who never eats candy... he has gone on a candy surge the last couple of days. Today he ate reeses pieces and m&m's. He says these don't hurt his throat because he doesn't have to swallow them. I haven't quite figured that one out yet.
Saturday, November 8, 2003 6:15 PM CST Photos now are out there from today!
Friday, November 7, 2003 9:05 PM CST Today was a good day for Owen. He had some stomach aches in the morning, but then he has been feeling good all day. He was in the shower this morning when the doctor came in and he was singing up a storm! The doc thought it is fantastic that he is feeling so well, especially his blood counts are falling fast and he should start feeling tired. Thursday, November 6, 2003 9:04 PM CST Owen had another great day today. He beat the Harry Potter game cube game so he is thrilled.
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Then as we were eating dinner - he was very chatty and happy. Hmmm this is good. Then as we were finishing up he asked if he could call Dan - his buddy who has been asking all week for him to play - and go over. It was now close to 7 so I said I would call. I gave Ken a call and sure enough they were happy to have Owen over. So I packed him up, he thought he would try to spend the night too. I brought him over and hung out for awhile with the little two. Owen was in a good mood and having fun - mostly just doing game boys but he was smiling! Chris stopped by and we stayed until 10:30. Then I headed home and Owen said he was sure he wanted to stay.
We kept waiting for him to arrive in the middle of the night, but he didn't get home until late morning. Still smiling! He has remained in a good mood for the most part today. He said he was a good boy at Dan's and didn't even get up to eat in the night - he WANTED to but just rolled over and made himself go back to sleep. I told it is OKAY to eat in the night and Sue or Kenny would have helped him, but he didn't want to bug.
He has a little bit of constipation going on. Twice today he yelled while on the toilet of the burning and how it hurt. I gave him the miralax to help, but it might take a couple of days to soften him up. Our NP Zarina told me he could get constipated with his meds and the Tylenol w/ codeine but so far we hadn't seen it. He took a tub tonight with some Aveeno soaking salts that works on diaper rash, and then I put some A&D on him, he is getting a little red there.
So yeah for the up swing - heres to hoping it lasts!!!
Another family who I follow on Caring Bridge just relapsed AGAIN. This is the 4th time! He is only 20 months old, he has basically spent his whole life in a hospital or close by.
The are in North Carolina, but are from Indiana. The mother of Baby Donovan has not been home to Indy since the beginning! This is the same child I spoke of awhile back and he had a testicular relapse. The doctors there just recommended removing the testicle. I had contacted her then about Owen and how our doctors said removal alone would not cure. It was over 90 percent chance of relapse without treatment. The doctors there disagreed. Now I have no idea if this relapse is due to the cancer that was in his testicle or not. It just sucks that here they are going through another relapse. He is just the sweetest thing and it breaks my heart to know how hard he and his family are fighting and are just not catching a break. It scares the hell out of me as well for looking to our future. I know I can't think like that but next Saturday the 26th will be our 3 year anniversary of Owens diagnosis. He has been in this battle for so long himself. I know we had a couple of those years with low doc schedules and such, but it has been THREE years of my little boys life - living in doctors offices and hospitals. So why do I do this to myself and read other websites, knowing that the odds are I will have some families dealing with relapse or worse? I can't explain it - it is so helpful to me to read their stories and know the ups and downs of their lives, and to see our life is 'normal' for a cancer life. No one wants to be here but we all are and we are support for one another.
I just got an email from a family I meant through Caring Bridge. Her son has the same mix of leukemia that Owen had, and just celebrated his 1 year post transplant anniversary. Glenda and I email once in awhile. But there she was lending me support for the steroid roller coaster. Would Owen like to IM with John? Email with him? Play XBox live with him. (Xbox live is actually playing xbox over the internet with another person who has Xbox as well). We may not know one another personally but families on caring bridge become friends and support virtually. I can't tell you how that support truly helps!
Thankyou Glenda (and John) and I will be writing back as Owen would love to chat w/ John. We haven't done the Xbox live yet - but maybe soon we will look into getting this going.
Tomorrow Owen and I will attend a benefit for Debbie Siracusa. I use to work with Debbie for oh... 6 or 7 years at Siracusa's Restaurant. Five years ago Debbie was diagnosed with Multiple Chemical Sensitivity, a chronic illness due to a weakened immune system and exposure to chemical substances ub the environment. Her body is overwhelmed with toxins, causing a malfunctioning of her digestive system. She is unable to detox due to the overload of poisons in the blood, lymph, liver and kidneys - in turn causing her immune system to shut down. Debbie is currently undergoing a personalized detoxification program at the Hippocrates Health Institute in West Palm Beach, Florida, which began July 31. So I will be going to lend the support to her and her family ( my x-bosses). I am hoping the whole ol' Siracusa team will make an appearance - it will be great to see everyone we were such a close group back then.
Thanks for checking in and have a great night!
Then came today. He was grumpy and sad from the git-go. He went to religion, but mom said he came home just a grumpy and remained that way all day. I came home and he just seemed to sob uncontrolably. He has been picking his nails non stop and crying that he was going to get an infection and he couldn't stop!!! He told me he didn't want to go to religion anymore because Aunt Anna wouldn't be there tomorrow, and it was just too hard for him. He said he wasn't having any fun because the kids didn't talk to him and treated him different. I was trying to calm him and get to the bottom of it. He was practically hysterical. I asked him 'how' the kids were treating him, and was he talking with them and participating - or hanging in the background. He kept saying no. I said Aunt Anna would call if you were having problems. He finally fell asleep. I called Anna to ask her if she had been noticing anything. She told me Owen is fine. He probably is worried because she won't be there. He is participating in class. He does put his head down alot and sometimes even dozes off or is just resting. She said she lets him do what he needs to do and doesn't push. But she said that is probably why he feels the kids are ignoring him, but they are involved and he is resting alot, even when in the church for meditation he will lay down. She said today he did seem very sad and even had a tear running down his face at one point. She asked him what was wrong and he just shrugged he didn't know why he was crying. Now Anna understands what I mean by his wide range of emotions! Oh only a few more days of steroids!!!
He does take alot of naps and dozes off at home alot and it is from the steroids I think. They don't let him get a 'solid' sleep, from what our NP said. Therefore he sleeps many times for short periods. I know he was up alot last night. He wanted oatmeal at 2:30 am. I was so tired I couldn't even open my eyes, I told him to just get something out of the fridge instead - so unfortunately that kept him awake as when he gets a craving he obsesses. He did go get a lunchable to eat but I think his brain thought of the oatmeal all night.
He slept until 8pm, his friend Dan came over with Kenny but Owen didn't want to get out of bed. So he was just in a slump today. I told him that tomorrow he should call Kenny after religion and go over. Dan has been calling all week to have Owen come play. He said he is too tired after religion. He even took a nap/ lay down at Walawenders that day. I told him that was fine, come home take a little nap to pick himself up and go have some fun. So we'll see.
I just feel so bad for him. I don't know what to do for him. Hopefully all this will go away when the steroids end. He is heading into the toughest part of his treatment and I don't want him going into it depressed, that will definately make it a long 24 weeks, or should I say longer.
Say a prayer for Owen to have some better days - he could use a pick-me-up! Have a good night....
Things didn't improve he continued to not talk and just shrug his shoulder when I asked him what was wrong. We headed to Syracuse for his appointment. After arriving to 5C - Collen the Child LIfe Specialist - tried to get Owen to get interested in something but nothing, no talking or anything. We headed in to get weighed and checked in. Owen has gained 7 pounds in a week! We went into the room to wait for Zarina to have his checkup. I finally got out of him that he was really nervous about getting his port accessed. I told him we had the Emla (numbing) cream on it so he should be fine. But he remembered the little girl on 7H telling him it still hurt a little when the needle went in. I told him at most he might feel a tiny poke but nothing like when he gets a blood draw or IV placed. Zarina came in and told him the same. He is starting to cough and I believe it is from the anesthesia he received last week. He always seems to develop this after now. Zarina said his chest was clear but he should have Albuterol treatments 2xDay for a while. Everything else is fine.
So back to the play room - with Owen feeling alot better about the port access. Colleen came back with a book about it - so we read it together with her. Then it was time to head to the treatment room. I got out the Spider Man I Spy book - these books always seem to take Owens mind off of it. So as he was searching for the items - the needle went in. I looked at Owen and said "You're done - the needle is in" His eyes got wide and a HUGE smile spread across his face. He felt soooo much better now - he didn't even feel it. The nurse did a blood draw and the Vincristine chemo push, flushed him clean, and pulled the needle out! Wow we are done!!!! Owen was all smiles and chatting up a storm now. Everyone commented on the 'new' Owen coming out of the room from the sad one that walked in!
Owen goes inpatiant next Tuesday to start the beginning of the Intensification phase. In other words we are headed into the tough part of his treatment! This will be week 27 of 104 - wow still a long way to go! This phase is a 6 week cycle -repeated 4 times so it doesn't end until 1/30/07. It consists of Wk1=Ara-c (3 days inpatient),Wk2=doc appt w/transfusions, Wk3=doc appt w/transfusions, Wk4=Spinal Tap w/chemo insert & bone marrow aspiration, Wk5=Methotrexate inpatient 4 days, Wk6= Etophous and Cyclophosphamide.
We have to do blood counts on monday to make sure he is okay to start. We should expect his counts to drop about 7-8 days after this chemo. Unfortunately this is when we are planning on going to Niagara Falls to meet our cousins from Vancouver. Zarina said she wouldn't cancel our plans to go - but understand IF he were to get a fever while we are there that we need to get to a hospital. So I will need to find the nearest hospital - both on the Canadian and American side. She said that since he has the port now - not the hickman he has a better chance of not getting infected, but to use caution. We will be carrying clorox wipes and purell everywhere we go!!!
Tonight was our cousin Mackenzies birthday party at Champions for Life. Owen was starting to not feel great - but he didn't want to miss it. He was already feeling stiff from the chemo today. We headed to the party but after only being there 10 minutes he knew he couldn't do it. I ran him to Grandma Pats and headed back. The kids were in the eating / present room first so I was back in plenty of time to watch the fun in the gymnastics room. Tyler and Jake had a blast. The kids get to do all sorts of activities - dancing, trampoline, blow up slide .. .etc. They were very good about staying in line and following directions. I only had to chase them back a couple of times. The last time Ty took off to do his own thing I made him go in the hall and sit in a chair to watch. This seemed to do it- he behaved after that! Jake talked about it a mile a minute the whole way to Grandma's. My cousin Chrissy gave Jake an Aladar (dinosaur) vest that used to be her son's favorite. He was so thrilled!!! He kept taking it off to look at the picture and couldn't wait to show Grandma. Thankyou Chrissy - he will take very good care of it!!!!! Part of the goody bag were McDonald gift certificates - Ty knew all to well what that meant - yeah French fries! LOL
Owen still wasn't feeling too hot when we got to Grandma Pats. He had dozed off and on most of the time. He was really stiff and sore. We packed up and came home (after getting French Fries!), got some Tylenol w/ codeine in Owen and he is resting quietly now. So hopefully he will have a quiet night. He has religion this week and next - but he will miss next week with going inpatient. He loves it and Aunt Anna teaches it. It's too bad - at the time we signed up for these two weeks he had nothing going on with his treatment. But a few delays backed up the schedule and now he will miss alot of it.
Have a great night!@
After golf it was home to finish making some dips and pack up the kids. We headed out to Uncle Dick and Aunt Judy's. Now Jake was all excited that there would be a jumping house at the party. I tried to tell him that there was not going to be - but there 'always' is a jumping house at parties! Well I should have known not to doubt him - there was indeed a jumping house! I don't think Jake left it all day - except when he needed a drink. Tyler enjoyed it as well, expecially there was a BIG ball inside and he would run and jump up on top on to flip over and roll away. The giggles of delight were heard everywhere. Owen started out the day by eating of course. He thought he would just hang in the food area all day! He was in a good mood but then got an upset stomach from eating 'the meatballs'. WHAT?! I made those - don't say that! He took a benadryl and laid down on the couch for a while. His friend Dan and cousin Jordon would go hang with him and play Gameboy , so he always had company. He spent most of the day inside but was quite content and happy to just be there.
We got a few volley ball games going - whew its been a while since I have done that - but it was alot of fun and laughs. Trust me we are not headed to the volleyball hall of fame. LOL We headed out around 7 to alot of protests from the jumping maniac Jake and Owen who wanted to stay and spend the night at Jordons. We didn't feel Owen should - he has been sore and felling up and down the last several days and didn't want him to go. He was very upset and said he felt fine - "Why can't we let him be a normal boy" OHHHHHH Owen I live for the day when you can be that normal little boy again. You have been robbed of so many things in the last three years. So with a big pout lip and tears we loaded Owen with the promise of 'another day' for Jordons.
We got home - Tyler and Jake lit some sparklers - and had a blast - then in to PJ's and some rest time. I think all three boys were crashed by 8:30!!! So much for Owen feeling fine and wanting to go. He wants to do so much, but his body needs rest. Even though it was a low key day - it was lots of interaction and obviously it tired him out.
I think today will be a quiet day - a trip to the store for some more items on Owen's craving list and maybe some back to school supply shopping - but that will be a highlight!!!
Have a great day!
I called the doctor just to be sure. The nurse called back and she said it probably was a combination of the surgery and Vincristine. She said alot of times after surgery it takes a couple of days and then it will feel like a truck ran over you!!! All your muscles will hurt. So she said to keep an eye on him and if he continued to be in alot of pain to call back - or call the oncall doctor over the weekend. We could also supplement the Tylenol w/ codeine with regular Tylenol. By the time I called back home the medicine had kicked in and Owen was feeling better already. I told him for the next day or so we would just give him the pain medicine every 4 hours and not wait for the pain to set in. This seems to be working so far, he has been much happier and not in pain now.
Tomorrow is our family golf tournament and reunion. Owen is worried he won't be up to going. I told him that is fine. That is the whole reason the party is not at our house this year. Since our life is so unstable and who knew if Owen would be feeling good or if we would be in the hospital etc. the decision was made to move the party. Now I am so glad we did that. It certainly wouldn't have been fun if Owen was hurting tomorrow and there were a ton of people running around here. So whatever he is up to doing tomorrow. I told him he could even try to go and if he didn't feel like staying we could leave. I think he is more worried that he really isn't up to the running and playing that all the kids will be doing and will feel left out. But like I say - we'll take it one moment at a time - whatever he is up to.
Have a good night & thanks for checking in on us.
Tyler had a baseball game tonight. He had fun and loves to bat the most!!! Doesn't everyone. He still hits the ball and then runs the bases backwards. I tried standing on first so he would run towards me, and the coach at home plate tried to direct him that was - but he got mad and sat right down - so from now on we'll let him do what he wants - fun is the name of the game.
Now for some news I have been keeping hush till I knew for sure. Our little Bo ( the younger boxer) has a wonderful home!!! One of the guys Chris works with called me a little over a week ago. They had a friend who had a boxer and they fell in love with the breed so he wanted to know where we got ours, how much, what kind of dogs they were etc. Well as we talked I told him we were looking for a home for one of ours, that 3 dogs was just too much and they needed more attention and were not getting enough, especially Bo, he is such a people person and needed more interaction. Mostly Tyler and myself were the ones who gave him attention. So Bo left over a week ago for a trial run. Well it is official - they want him. He sleeps in their room with them and their other dog. Their son and Bo are inseparable. He seems to be loving his new home. I feel so good about it. I miss him but know it is the best for him and for us. The three dogs together were just getting into way too much trouble. And the fighting between the males had started up again. So things are calmer here at home and I think Nikki and Champ are enjoying the calmer life. Bo had soooo much energy and no one to spend it with. Now he has a family that spends alot of time with him and he is allowed anywhere he wants to go and is not chewing up anything! I knew thats all he needed was more loving and attention. The family is in the country with the invisible fence so he is able to run alot still. So big sigh of relief!!!!
I guess thats it - have a great night!!!!
Have a great night!
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Today is surgery day and so far it is not going well. Poor Owen he is so hungry. He has been sobbing since he got up at 9 that he is starving. Being on steroids and not being able to eat is not a good combination. I feel so bad for him and there is nothing I can do. He last ate at 1:30am last night, but unfortunately he eats every 2 hours now - that middle of the night meal is doing nothing for him now. I can see he eating immediately after surgery which will drive the nurse NUTS - since you aren't suppose to - but hey we did it last time he was on steroids and surgery and was fine. I will update later on how the surgery goes.
Anyways we got out on the lake and met up with Michelle and Chris McLoughlin and Tom Lipiska and his kids Miranda and Thomas. We went to Indian cove to relax and let the kids swim. Owen was still grumpy and mad that we made him go. After a couple hours Owen told me he wanted to go back to Papa W's he didn't want to stay anymore. I told him - no we wouldn't be out much longer and he needed to 'try' and have fun - go in the water with the other kids - play - do something!!! Just then blood came gushing out of his nose!!!! Both Chris and I jumped into action - pulling him onto our boat - he had been sitting on the McLoughlins - and getting him a towel with ice. Chris started pulling the bouys in and unattaching us. I assummed it meant Owen was low on platelettes as that will happen - but was taking no chances. Tom - who lost his wife Kelly to leukemia in March agreed that was probably it. So we went on our way. Luckily we were right around the corner from Papa's house and were quickly unloaded and ready to go home. Owen's nose had stopped by then and he seemed to be okay. We go thim home where he relaxed but was very anxious all night. He couldn't sleep and was even taking a shower at 4 am still trying to settle down. He kept only dozing off for little bits.
He went for blood work today and I anxiously awaited the results. By 2 I had not heard from the hospital so I left the nurses a message to call me with the reulsts and told them about the bloody nose. At 4 I got a call back and all his counts are fine. His White blood count is real hight but that is to be expected on the steroids. They are assuming the bloody nose was due to humidity and just to keep and eye on it. If no more issues they will see us on Wednesday for surgery.
Owen took a little nap today and was grumpy most of the day. He was 'craving' things and we didn't have any of it to eat!!! So after work I took champ to the vet - his lump looks to be clearing up but another might be coming!!! We are going to watch it for a week and see how it goes. Not sure who is more high maintenance the dog or Owen!!!! After I packed the kids up to go to walmart for a Steroid food craving shopping spree. Chris was home - but our dryer is on the fritz and he was hoping to fix it so we don't have to buy anther - it is 11 years old but I want a few more years squeezed out (I thought they lasted 20 years?! - shouldn't they?)
So all the kids and me were off. Owen got $60.00 in craving food - boy I hope it last at least a couple days!!!! Mostly junk food - he is on a 'sweet' craving right now. Just don't want Tyler finding all the 'good' stuff, I try not to let him have it.
Owen is really filling out now, you can see it in his face, and he is getting a budda belly - no picture posting though until the end for the big comparison!!!
Have a good night!
Owen had Thomas come spend the night - but he wasn't able to arrive until late as he had a baseball game. Then they wer up early at 7 and Thomas left shortly after - he had a stomach ache and didn't feel good. So Owen was sad as he didn't have enough play time.
We headed out to Tylers game at 9am. They played 2 innings before they were 'done'. But it was cute. They all get to bat and play the field and do what-ever they want so they have fun. The three boys and I went to breakfast at Kosca's. After we headed home and Owen wanted to know if he could have his cousin Jordan over to play. Jordan arrived at 2 and then at 3:30 we headed to the Throop Fire Department. They were having family fun day there. They had a jumping house, water slide, dunking booth, face painting, balloon man and lots to eat. We stayed there for a little while, but Owen started feeling down because it hurt his legs to do the jumping house, or water slide so he felt he couldn't do alot. The ballon man had a huge line and after waiting 1/2 hour he was tired from standing so long. So we headed back home where Jordan and him played.
Owen's steroids have kicked in full swing now I think. Let me share his menu today.
7:30 - 3 waffles
10:30 - 2 eggs,2 toast,homefries, and sausage
12:00 - 5 chicken wings
1:00 - ham sandwich
2:00 - 1/2 egg sandwich
4:00 - hotdog and corn on the cob
5:30 - chicken nuggets
He finally is full!!! He doesn't want dinner, but I would bet he will eat before bed!!!
Other than that all is quiet. Today Chris and I golf ( on separate teams) in the Pennefeather tournament. This is one of my favorite times. Our girl team is a little nuts and are always a source of entertainment over the years - this is like our 15th year. We usually do something crazy or have a theme to out team. This year we are Cow-girls! I will post pictures later. And no this is not the whole tournament - just us girls do this!! We are also the jello-shooter team - carrying a big supply - so everyone is looking for us! It is a lot of fun and I am looking forward to it!
Have a great day!!
The hand access went well - first poke and the 2 chemos were pushed in over 20 minutes. Then Owen had to wait for the respitory therapists as he needed his monthly pentanamine breather. He has this in place of the 3 days of bactrim he was taking - to help prevent pneumonia. This was started around 3:30 and we were on the road by 4.
There was no reason to go back to work so Owen and I skipped over to Toys R Us in baldwinsville. He still had not used his card from the radiation department and I had to return a present that Jake got. Owen had some cash too so he bought a Tekno robotic dog. I traded the duplicate dinosaur Jake got in for .... yep another dinosaur! We got up to the cash register and the gift card was empty!!! Poor Owen - so I gave him the money - not his fault the card was a dud. Although I will warn everyone they should ALWAYS check gift cards after they money is put on them. This has happened before to me at Lowes, so it never hurts to double check the money really does get stamped on.
We came home to hang in the pool and relax - sure was a hot one and today looks to be the same. Tyler will go to camp today - the pool is fixed. Mom will double check when she picks up Jake from camp - if not she will bring him home before it gets too hot - well whats the temp now 85 at 7am!!!!
Have a great day and try and stay cool!
Owen on the other hand did not have a good day. The steroids are starting to do a number on him. He is just down in the dumps. He couldn't jump in the jumping house as it hurt his legs. He didn't want to swim - he said his body was too weak to swim. I tried to get him to just go in the shallow end but no go. He just moped around the house during the party. Some of the kids went inside and started playing XBox with him and that perked him up for a bit. Then when the presents, and cake, pinata time came he was bumming again because everyone left. There was no making him happy.
He continued to spiral down on Monday. He was happy for a little bit in the morning as there were 'Jake' stories. Mom took Jake to Dinosaur camp, Tyler started back to Freedom camp too. Jake was all happy when he got to the YMCA, but when Mom went to leave he ripped his name tag off and said "I'm not staying here!" LOL Thankfully Connor is taking camp too and got him interested in some dinosaur books and mom snuck out. He ended up doing fine and even put his 'eye' in the water at swim time. Owen went for blood work and got the giggles when she was doing it thinking about Jake ripping off his name tag. Then that was it, he was sad and moody all day. I was in a golf tournament for Auburn Education Foundation - I was on the sponsored Nucor team. Owen called a few times crying that he wanted me and didn't know what was wrong. When I got home he just moped but wouldn't talk to me. I tried to figure out what to do for him - but there was nothing to do. I was outside putting Jakes new soccer net together and heard him sobbing. I came in and he told me I broke his heart. I asked him how, and he said he was ready to talk and I wasn't around I was outside with 'the other ones'. Ohhh Owie I wish I could make you feel better and stop your roller coaster of emotions! He finally decided he wanted a cheeseburger - and gave up trying to get me to go to McD's, I made him one which he devoured, then he asked for another. I made that and then he says "Mommy - I love you - your cheeseburgers are much better than McDonalds - because you make them" He totally flipped over and was in a great mood!!!! Argggh - I will never figure out what triggers these swings.
Today he has Vincristine and Dauncyrubin chemo. These are the two pushes of chemo that should take a total of a 1/2 hour, and a checkup. His blood counts came back good yesterday. He doesn't need any transfusions.
I have decided NOT to go to Dallas for work. I drove myself crazy all weekend thinking about it - and everyone else too I am sure. But in the end I just don't see how I can be away while he is having surgery. Yes it is quick - about an hour - and the chances of something happening are very slim. BUT - what if???? He has had so many reactions to things this time around and I would never be able to live with myself if he were to have issues and I am stuck in Dallas - not like I can whip home quickly. I will be better at calming him - expecially being on the steroids and not being able to eat. Nothing beats a mom being there.
Tyler is staying home from Camp today. They are doing repairs on the pool and with record heat temps I don't want to send him. They did send a note home that they were bringing them to Emerson Park due to the heat, but why trnasport to Casey Park, To Emerson Park, back to Casey, then home. He will be spending alot of time on a hot bus, and I think he will just be happier, hanging in the pool here.
I guess thats it for now - have a great day!
We went to Seabreeze yesterday and had an awesome time. Owen, Tyler, Chris and I went. Chris originally was working and Nikki was coming but he got rained out and wanted to go. We drove up in the pouring rain and were wondering just what type of day we would have. It was barely a drizzle when we got there though - but not very warm so we decided to start with the dry rides. Chris couldn't get over Tyler - he is a ride machine there. He LOVES all of them (that he can go on due to being a shorty). He is a daredevil. Owen and I started right in on the Jack Rabbit - the big wooden rollercoaster - no sense in warming up I guess! After an hour or so the sun was out and hot so we headed to the water slides. We had a blast. Chris and Owen teamed up and Tyler and I did. Ty is still to little to go on the tubes by himself - I think he would fall right through! We headed to the Grove to eat, nucor provides that from 1-5 hamburgs, hotdogs, etc. so it works out great! We teamed up with the Deckers there. Sean, Owen and Tom took off after eating - we weren't done yet - to ride the Sno-bobs another roller coaster. I looked at Sharon and said - 'how sad our babies are growing up - we are letting them go off on their own....' We joined back up and then the Deckers were headed for the water rides. We then saw the Walawenders and spent most of the rest of the day with them. Tyler fell walking and did a pretty nasty scrape on his knee and elbow, but that wasn't stopping him - no way!! Pam ended up going off with Tyler to all his rides while Owen and Sam LIVED on the Whirlybird roller coaster. They finally got hot and wanted more water rides. So I went back with them for a bit. It was now 7:00 so I got changed and went looking for Pam. I found them - Tyler was just a beaming machine. We found Owen again and said it was time to go and left the walawenders at the wave pool. Played a few games and were on the road at 8. I think we will all be tired & a little sore from the rollercoasters today!!!
Owen got a postcard from his teacher Mrs. Vasquez who is in California visiting her son. She went to SeaWorld and Disney. She told Owen she had to close her eyes on space mountain - which absolutely thrilled Owen!!!
Tomorrows Jakes big birthday party - he is sooooo excited!
Monday Owen needs to have blood work done - more to make sure he doesn't need a transfusion. The chemo he had last week shouldn't drop his counts. His hair seems to be falling out again! We are noticing little bits. It could be just that he has fuzz - like a baby chicken and that part is coming out for the real hair. I hope so - I am getting use to seeing him with hair again!
They have scheduled his port surgery. August 9th. I am suppose to be in Dallas, Texas for work!!! I tried to switch it but they have nothing again until the end of August and he needs it by the 22nd when he goes inpatient again. Sooooo - I am torn!!! Do I cancel? I know this is a quick surgery and nothing to it - but I have always been there for all the big stuff. I am not sure how Owen will react. Chris can go and Grandma Pat can too. ARGGGGH - I have to make a decision quick and hope that if I decide to cancel they will let me cancel through the airlines for the medical reason.
Have a great day!!!
Today was Jake's birthday - I posted pics from his celebration tonight. He was soooo excited today. Of course he is still looking for ALL his presents. He is suppose to get lots and lots of presents... where are they? I tried to explain he will get more at his party Sunday but not sure this is sinking in.
Thats all for tonight - have a great night!
They did decide to give him the Daunorubicin. Our NP Zarina talked to two of the doctors and they both agreed that since he was still in normal range they needed to complete this phase and give him this chemo. I am going with their expertise on this. Of course now I think of the questions - Will they test his heart again after? What if his heart is no longer normal after this phase? I will have to email Zarina and throw these at her.
We went down to radiation after and saw Dr. Hahn for a quick checkup. Everything is fine and they will no longer need to see Owen - the Onocologists will be able to identify and issues that may come up from this point on. So one doctor down!
Owen came back to work with me - we arrived a little after 3. It started pouring out and I wanted him to run out and check my windows on the van. He told me he couldn't cause he didn't feel well. Of course we all started laughing as that would be typical Owen - throwing that out to get out of any physical work. Then a few minutes later he looked at me and I swear he looked green - he said really mommy we have to go I don't feel good. So out the door we went. I still had to get his steroid prescription filled - so I got that done quickly and we headed home. He laid on the couch and took a benydryl. Then the leg pain set in. The Vincristine always gives him leg aches. He was walking stiff and hurting a little. I can't remember how long the leg aches last after getting this - so I'll have to research my journal... see this journal helps me in many ways! Hopefully he will be feeling better by Friday for Seabreeze. It is Nucor's family day - they have one of the Groves sent up with food, plus food tickets for the concession stands. Can't beat that deal!
Tonight Jake and I made a Dinosaur cake. I have a dinosaur pan and we worked hard at baking and then decorating the cake. The sweat was pouring off me. No wonder I don't bake! That is alot of work doing all the detail decorating!!! It doesn't look to bad though - definately not like the picture - but you can tell its a dinosaur! Tomorrow is Jakes birthday the big 4, and Sunday is his party, but I made the cake for his real birthday.
Have a good night - I'll let you know how Owen continues to feel.
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Owen went for blood counts this morning. He was very nervous about going - he wanted to go to Syracuse because they know how to do the needle pokes... he was near tears when we got in there. The girl was wonderful and very chatty - she got Owen first poke and you could see the relief pore over Owen.
We got the call later and Owens counts are good - he will be getting chemo tomorrow. He gets two - Vincristine is just a quick push into his IV, and then he is also suppose to get Daunorubicin - which is by IV about 15 minutes. However this chemo can do damage to the heart and he had an echo when we were in the hospital last time to see how strong his heart is. His echo was read as normal but the left ventricular shortening fraction (which is the number looked at) was 30, normal is 28-40 in January before induction Owen's was 35 Our NP Zarina will discuss it with Dr. Dubowy - we may need to reduce or even hold the Daunorubicin for this phase. He also starts 21 days of STEROIDS!!!! Look out grocery bill and mood swings - are we ready for this?
Owen went swimming today at Grandma Pats neighbors. No worry on tubes, just fun fun fun! He is loving it! Not sure when we will get the port. Will discuss it tomorrow, Owen says he wants it soon - after Seabreeze on Friday - he doesn't want to keep getting poked for blood draws and his chemo the next several weeks.
Other than that things are good, Owen had his buddy Thomas spend the night Saturday. It has been awhile since they have been together and they were so funny - to hear them chatting away and catching up with all their stories on what they have been doing. I couldn't help but be a little sad - they are starting to sound so grown up.
Have a good night!
Tylers baseball game was cancelled - so far the last two saturdays have rained and they haven't played yet!! Owen's baseball picnic was today, we were going to go for a little bit, not long since Owen still has a week immune system and it would be alot of people. However since it is raining we decided not to go at all. Everyone would be crowded until the shelter - thus more close contact... Poor Owen it has not been a very active baseball year for him!
Owen will need a blood draw on monday ( yes a needle poke), then a checkup and chemo maybe if his counts are back on tuesday. Then wednesday he has a checkup with the radiation department. I am hoping one or the other can move the appointment so we only have to go to syracuse 1 day.
Thursday our dog Champ has an appointment - yes again - he has a wart growing on the top of his head! This is common for boxers but we need to have it looked at to make sure that is all it is. He is also limping again. He chases bugs ALL the time and is constantly leaping up. I think he is putting a strain on his joints. I know someone who had a boxer and they had to do reconstructive surgery on his joints due to this! So lets hope that is not the case! I don't know how to prevent him from doing it. We no longer let him chase the 4-wheeler - but bug chasing how do you stop that??!!
I have posted some more pics from our trip too.
Enjoy and have a great day!!
So now when all this started I never got to tell you about Marine Land! We arrived at Marine Land at 11:30. Perfect timing as Tyler was getting mad in the car and Jake asked one time too many when we were going to get there! Once Ty saw the rides he was off and running! We made our way around stopping at rides, Ty and Owen did most of them, Jake only did a couple he is definately not a daredevil when it comes to rides. It is quite a hike around the park and inbetween things to do. We thought that was kind of nice as it gave a break and wasn't such a rat race. After the child/ family rides we stopped for a drink and of course French Fries for Tyler! Next were the Killer Whales. They really don't do much of a show. Or we missed it - one or the other. We saw them having the whales splash people and then you are allowed to pet and feed the whales (for a price of course - we did not). We kind of hung back - there was one whale that was in a bad mood and wouldn't participate in the show so he was in a back area and jumping and throwing a ball around so we were happy to watch him. More rides, and then the Beluga Whales. This was the same as the killer whales, mostly a pet and feed the whales exibit. The kids were happy just watching them. The bears were really neet - we have to remember to bring some apples for them when we go back. We are bringing fish food for the 'carp' and food for the bears. Owen was upset we weren't buying food for all the animals but you would go broke doing that. I told him we would bring our own when we go back the end of August with our family from Vancouver. More rides and then we made the mistake of going into the deer petting zoo - it stunk of urine and feces! It was soooo hot and the deer didn't want to be petted and it just was awful - so Glo we are skipping this next time!!!! Everyone was getting pretty tired by then - it was a very hot day - in the 90's and getting grumpy. The next dolphin/seal/walrus show didn't start until 5:15 and it was 4:00. We didn't think they would make hanging out for another hour so we decided to pack it in and head to the hotel. We figured we could either come back in the morning or hit it next time.
We kind of got a little lost on the way back to the hotel but eventually made it. We quickly changed into swim suits and hit the pool. That really hit the spot and gave us all the pick-me- up that we needed. We got dressed and walked down the strip - we were staying right in Clifton Hills - the tourist trap area. Never again! There is a million and one things to do and they all want 10-15 per person to do them!! We kind of skipped out on doing any - not sure how - and made our way into Rainforest Cafe for dinner. Owen has been before but never Tyler and Jake. They were so excited and loved the animals. That is until the first thunderstorm ( the fake ones inside the restaurant)... Ty's eyes got huge ... he made it through but definately didn't like it. All was well again, our dinner came and we were eating when the next storm hit... TYler threw down his fork and started running! I was so shocked it took me a minute to react, luckily a man at the next table jumped up and followed Tyler and was watching for me. Soon I caught up and the storm was ending! Tyler calmed down and we took some pictures with the animals and imitated their noises and were having fun ... when boom here comes another storm. Tyler paused for a minute and then was fine - we were by the Elephants. I think he finally realized that they were fake.
After dinner we headed down to the falls. The nice thing was everything was within walking distance of our hotel. Jake really liked the falls. We walked from the American down to the Canadian. The american falls have really changed from what I remember. Due to the crashing of the falls there is a lot of rocks cut out and it is just a lot prettier - not so plan. We stayed until the lights came on. I have never seen the lights at night before they were beautiful. We headed back to the hotel - it was now after 10 and we were ready for bed, it had been a long day.
Next morning I was up at 6:45 and as I was walking to the bathroom I hear - Hi mommy. Oh no it's Jake. Why are you up!!! "Look its not night any more - I don't have to sleep" Yes the sun was up and he could see that since the drapes don't 100 lose over the shears, don't understand that concept! So I showered and Jake and I went for a walk. There was a dinosaur miniature golf course next to our hotel, so when we walked by the gate was open to it, so whether we should have or not... we did... we went in. Jake was in his glory running from one dinosaur to another. I had to take a picture at everyone! I was so glad we did it this way, we saw the golf course when we got there but didn't really want to play - but knew we would never get out of Canada without taking Jake through those gates.... So then we continued on our walk and went through a park. We could hear the falls on the other side of the trees. Jake wanted to go back to the falls but I didn't want to tire him out first thing, so we headed back. It was now 8:30 and everyone was waking up. We headed to breakfast and then walked around a bit. They had a Marvel Superhero arcade and shop, so we explored that, and of course Owen and I did go on the Spiderman ride. Just to give you and idea - it was $27.72 for the TWO of us to ride!!! Now thats why you don't want to hang on Clifton Hills! It was really just a ride through all of spidermans villians and you shoot at them with your lazer gun. Owen loved it and thats what counts! After this we could tell everyone was already getting tired from the long night and hot days so we decided to head home.
We drove around so we could drive by the falls one more time. Owen wanted to see the barge that sunk just before the falls and we couldn't see it at night. He is already talking about how we have to walk down to that part in the day on our next trip.
It took about 45 minutes to get through customs on the way home - Yuck! But then we were on our way. We arrived home at 3:00 and headed for the pool. I then had to start packing for Owen to go to camp... and thats where my journal started the other day... as we had to cancel camp and run off to the hospital!
So we had a good time and boys really liked it. It will be nice to go back and visit with our family. We are going to stay closer to Marine Land and away from the rat race which will be great. We want to hit Marne Land and then just hang out and visit, do the falls in the morning and head home.
Have a good night!
Owen has been discharged!!!! I came home from the hospital this morning to repack. It took me 1 1/2 hours with 690 ramp closed and traffic issues!!! So I got home at 10:00 and called Owen to let him know Grandma had just left to come up and it might take awhile.... he says "I'm coming home!" The doc was right there and he says his counts are coming up WBC was 1.2, platelettes were up and hemoglobin were up. ANC is still low BUT strong enough to let him go - he is safer at home that at the hospital.
7H has been pretty empty but starting later yesterday alot of kids (some from other floors that had no room) were coming in. Owen ended up rooming with someone who had 105 fever and vomitting. He was from another floor and they had not identified what was wrong yet! I was quite nervous about that with Owen being so suceptible to things. They were going to try and move rooms around so Owen could be with someone a little healthier.... but then the doc sent us home. Owen is on "home-arrest" though. Need to wait for his counts to come up. He has to go back on monday for a blood count ( and yes it will have to be periphyl (in arm) as he has no access port now. And NO I will NOT be doing that! Tuesday he will go in for a checkup & if counts are good he could get his chemo.
So yeah yeah yeah he is on his way!!!!! I am not taking my sanity night (golf) tonight. I just want to sit home and see my boys!
Owen woke up at 5:30 with his hickman site throbbing, they gave him tylenol and told us no more to eat or drink until the hickman was removed. AT 9:30 the doctors came by and it looked like the site was more infected, and the hole had opened up more - indicating the infection was getting worse. So the doctor asked our decision and we told him we wanted it removed. I think he was happy we chose the route of not trying to fight an uphill battle and possibly lose! There was no guarantee we could get rid of the infection with the hickman in.
So at 11:30 we got Owen in the tub to get a good soaking and clean up before the surgery. At noon we were in the treatment room. They give him a memory loss / sedation drug. He isn't 100 sleep but he doesn't really feel the pain or remember it. The hickman was given a quick tug and out it came. Owen gave a little gasp as they did it. They then put the IV in his hand to continue giving him IV while we are here at the hospital. He squinted his eyes when that poke came. Then he kind of dozed. When he woke up 10 minutes later he looked at the basically empty room now VS when there was 10 people in there for the procedures. He asked "Did they take my tubies?" Yes they are gone. "But I wanted the IV in while I was sleeping" Its in too! "OH - wow I don't even remember them doing it!" He dozed back off and kind of asked the same questions a few more times while the med was wearing off. It look about 45 minutes for him to really be awake and able to come back to our room.
He is all smiles now - the big worry part is over. He can't wait to run and jump in the pool and not worry about tubes, bandage changes. He wants to go tubing. He is just ready to experience his new freedom.
His ANC count came up some today. From 55 to 140. So not bad. He is still considered very immune suppressed while under 500 - but I will take the doubling of his ANC in a day! Now that the tubes are out the antibiotics should really be able to work on the infection. His platelettes increased from 23 to 25, and hemoglobin increased from 9.6 to 9.7. His White blood count decreased to .7 from .9 but seeing how everything else went up is a good sign his body is recovering.
Not sure how long we will be here - they are thinking 3-5 days for his ANC to be strong enough to go home. Once it is we can go home on oral antibiotics.
I am looking at other camps to send Owen too - but doesn't look like the one located here has any more this year for his age group. Our NP told us about Camp Sunshine up in Maine that is a family retreat, so might think about this, however we have a couple of sfamily mini-vacations planned so we may just do those and he can go to Camp Good Days next year.
I will let you know if anything else changes but things are looking good for right now.
The infection is a Gram Negative Rod B - and can be a nasty one. Owen has only an ANC of 55 (under 500 is considered dangerous) so basically he is at no immune system. We are discussing pulling the Hickman. It will reduce his healing time due to the line no longer being there. As long as it is there the line gives the bacteria the power to hold on and continue to grow. Even if the antibiotics get rid of it ( probably 10 days minimum ) there could still be some hanging around in his body. If the hickman is pulled, we would need to let the body heal and probably in a couple weeks insert the new port. He can't receive chemo until his counts are up which have a long way to go, and also his platelettes need to go up as well. So we are probably looking at a week or so anyways. If his counts were to return before they want to do the surgery for the port they could administer the ones he has scheduled via a regular IV. They are two quick chemos for the next 4 doses he receives.
Nan came in tonight to talk with Owen about switching and showed him her port. It is just a disc under the skin and makes life so much easier as it is hidden and no maintenance unless it needs to be accessed. Owen wants the port in one sense because of the freedom it will give him - but is very nervous of the pulling of the hickman and surgery for the new port. Dr. Dubowy is letting us discuss it tonight. He will look at Owens site tomorrow - if it is any worse - there is no decision - he is pulling it. Otherwise we can decide.
There are many advantages to switching to the port. I asked about being able to insert a new hickman 'IF' (knock on wood) the need were to arrive to need a double access line, and the answer is yes. So I am leaning to the port. Chris and I will discuss more tonight.
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We had a good time at Marine Land and Niagara Falls. I will update on our trip and put up picutres later.
For now I want to let you all know we have been admitted to the hospital. Owen started a fever last night. I was low grade 100.8 and he was feeling fine so I decided to watch him - he just might be over tired from the weekend. I had him take a shower and changed his bandage. When I took his bandage off his hickman site was very red and a little swollen - right where it enters the body. His temp was now 101.2 so I called the doctor. We were told to come right over and would be admitted. We arrived around 9:30 by the time I packed and got Owen's bandage re-dressed. They took blood cultures and actually his fever was gone! I said good - we can go home then - sorry charley - we were here for the night. After they looked at his hickman and agreed something was going on there. They put a new dressing on it and an antibiotic cream directly on the sight.
This morning Owen remains fever free - but his hickman now has discharge coming from it. They took a sample to culture it and he already is on antibiotics. Hopefully they will find out what bacteria has gotten in and be able to treat it, otherwise his line will have to come out and a new device put in.
Owen was suppose to leave for Camp Good Days today - the camp for kids with Cancer. The doc hopes to be able to identify the bacteris - get him on some treatment and still get him to camp for a few days but is doubtful - will depend on where his ANC level (immune) is now with this infection going on. Owen was especially looking forward to their field trip to Watkins Glen to ride in the racecars!!!! So fingers crossed he will still get to enjoy some of this. The doctors and nurses here try very hard to get the kids to camp because it is very important for them to have this kid of fun and to be with other kids who know exactly what they are each dealing with.
So we will see - I will keep you posted on what happens here.....
LONG day. We arrived at 1:00, and the blood didn't get started until 4!!!! They nurse said it is because they have to Type and Cross him each time before he can get blood... so that doesn't take long - why 3 hours to actually get the blood up once the sample is taken????? Oh well, so we ended up on 7H to finish and left at 7:30 night. So a quick stop at the store for some last minutes stuff, home to pack and now bed to hopefully enjoy the weekend!
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We had an awesome day Wednesday. Yes even in all the down pouring rain! We did not go to the zoo though. It was a rain or shine event - but the rain was a bit too much for me and the boys. Tyler is at Freedom Camp (and loving it I can say), so it was just Owen and Jake. We headed to Build-A-Bear in the morning. It started out great from the beginning. There was a honk your horn contest on Radio Disney and Owen called to do it. Now he must try a million times to get on the Radio Disney things... well it paid off he was in. So I had to honk my horn to a Disney song of Owens choice and the DJ had to guess it. So we did "Jesse McCartney- Beautiful Soul". Well the DJ guessed Jesse McCartney but the wrong song. Yeah we won... so guess what he wins... a Batman Gotham City transformer set!!! Now if that wasn't right up his alley. He should get it in 6-8 weeks.
We arrived at Carousel and Owen was smart enough to suggest parking underground! Then off to Build a Bear, the boys just loved this. It is really cute and the people working there are great. Even Jake had no problem chatting away right off the bat with them. First you pick out you animal, then you go to the fluff machine and fill him with lots of love, friendship, kindness, etc. Then you get 2 hearts to put inside. They had to warm the hearts and then jump to get the hearts beating, Jake got giggling so hard doing this. Then over to the tub to give them a 'bath' - really just sir blowing on them while they brush the fur to get rid of any loose fuzz. Now its time to pick out the clothes. Owen had no problem - a Superman suit, and a Batman Suit! What a surprise! Jake didn't want any clothes for his Monkey, we finally convinced him to get some PJ's for him. (On the way home he wanted to go back and get a Batman suit! - another day Jake). So now naming and registration time. Owen named his dog - "Superdog", and Jake named his monkey - "Curious George Monkey Bonker" Don't ask me!!!!
We headed down to JC Penneys after - Owen needed some new shorts - he is growing fast... Then we headed to lunch. Jake carried his big Build-a-Bear box the whole time - mostly dragged it but he did it the whole way through the mall - great job!!! I mean the box is as big as him!!! We went to UNO's for lunch and then for a ride on the carousel. Time to go... as I said - good thing we parked inside it was POURING AGAIN.
We were back home at 3:00 and yes Golf was cancelled! Tyler came home from camp and we just hung out and did some marching and animal acting to some funny tapes. Owen went over to Samanthas house at 7 for a bit and I took Jake and Ty to Reesee's for ice cream. Tom (the owner) gave Owen a pint of Creamsicle icecream - Owens favorite!!! Thankyou Tom!!
Around 10:00 last night Owen spiked a fever. It was bobbing up and down between 102.1 and 101.7 - I watched it for a half hour as Chris wasn't home yet so I was panicing on what to do. I finally called the doc - but all was well. Owen has good counts, it was probably from having the spinal tap on tuesday and I was okay to give him Tylenol. If he was still running a fever this morning I needed to call and bring him in - but thankfully today was a new day and he is feeling fine. He is down the road right now at his friend Micaela's for a party and bonfire. Tomorrow will be a rest up day to get ready for Marine Land on Saturday. So I probably won't update until we return.
Have a great weekend - we hope too!!!!
Today Owen had his spinal tap and bone marrow aspiration. We were delayed quite a bit because when they looked at his blood slide our NP didn't like the looks of it - it appeared watery - meaning his platelettes were low. So she needed to wait for a blood count to come back. Sure enough they dropped from 34 yesterday from the blood draw I did to 14 today. Surgery can't be done with platelettes under 20. So now we needed to wait for platelettes to come up from the blood bank. Once they arrived they started them and we were off to surgery.
Owen was nervous today - he said the worse thing about the spinal and bone marrow procedure is ALL the people that come into the room before hand and have to check him out, it makes him nervous. Of course we need all these people to do their jobs and make sure he is good shape for surgery (like the anestesiologists (sp??)) The child life specialist came down with us to chat with Owen before hand to make it easier. She was really nice, and is filling in for Colleen who is out on maternity leave & yeah here name is colleen too! Nice and easy. She got Owen talking about camp next week and he is getting very excited. She was telling him all about the night campfires and singing songs and of course Owen has to ask " They don't sing Dork campfire songs do they?" Come on!!! You have to have silly campfire songs! He was laughing and feeling much better. He was VERY hungry at this point since he hadn't eaten since 10pm last night, and it was now 1:00. They had given him to big packages of Oreo cookies to eat when he woke up. So off he goes....
I went into recovery and the Oreo cookies were laying right in eye view so he would see them first thing! However Owen wasn't in the mood when he woke up. He has to lay flat for 1/2 hour after a spinal tap, so we let him sleep. Then it was time to wake him up. As the nurse was de-accessing his hickman line we noticed his whole stomach was covered in huge welts of hives!!! It continued down his legs and on his arms and was now going up the back of his neck. One of the onocologists was down on the floor for a procedure and came over. She ordered more benedryl for Owen ( he already hets pre-medicated with benedryl for reactions to platelettes). His lips were starting to quiver now and she feared he was also starting to run a fever. Luckily that was NOT the case, he was just cold from being out from under the heated blanket - trust me it was cold in there!!!! So now we needed to wait and make sure the hives started to go away to ensure it was a reaction to the platelettes and nothing else. After another 1/2 hour the hives were going away so we were ok to leave. Next time he needs them he will also get another medication (steroids) to prevent the reaction. We won't know the results of the bone marrow for 4-5 days.
I have to take another blood count on Friday to make sure his platelette count stays up and that his hemoglobin doesn't drop more - it is at 8.4 and they transfuse at 8. If it is okay, I may do another on Sunday just to be sure he is good for heading to camp on Monday. But we are going to Marine Land this weekend and we would need to go to the hospital for blood testing on the weekend, so our NP will check if they are capable of doing the blood draw at camp.
The bad news is chemo will be delayed next week due to camp. Zarina (our NP) says the treatment he is getting next week is not a big deal to delay and she would much rather see him go to camp that is very important for these kids to have that. The chmeos he would get are Vincristine and Dauncyrubin (sp?) and are quick out patient chemos. Before he can get the Dauncyrubin he has to have an echo of his heart as this chemo can damage the heart and they have to verify his heart is strong enough to take it first. So if they don't get us in the remainder of this week for that he will have in on Monday the 24th and his chemo on the 24th. The good thing is his steroids are also delayed one week, they start back up with the 2 chemos. So the camp people don't have to have Owen on his steroid hunger attacks!!!! We are saving up though for 21 days of eating - wonder how much he will gain this time???
Tyler, Jake and I went swimming tonight and it felt great!!! The water was 82 and perfect for me.
Tomorrow if Owen is up to it we are going to the Zoo with the PROP group (Parents reaching out program - for kids for cancer and their families). Hopefully the storms will come tonight and NOT tomorrow during our trip!
Well I guess that was a little long winded tonight. Have a good night?
Tyler, Jake ,Grandma Pat and I had a good time at the Throop Park. The had a jumping house and free icecream, face painting, games, and free-id cards for the kids from the sheriff department! The Sheriffs also did a demonstration with one of their canine officiers. The boys had fun, although it took me quite a while to convince Jake this was NOT his birthday party. He has been asking for months for a Godzilla jumping house at his birthday party. So of course Tylers birthday is past and he knows his is next. He was upset when we first pulled in and he saw a mickey mouse jumping house. " NO No mommy I said Godzilla house, and where is my cake do you have my cake. " Then later he asked where all his presents were - " Yeah presents, I want lots of presents where are they" Needless to say it was an all day event to convince him, but I think he finally got it when we left and he didn't have cake and didn't have presents!
I finally downloaded the pictures from Tylers party and from other events since then... but I will start with pictures from there. As you can see Tyler was quite pleased with the new car!
Tylers baseball practice was so cute. Saturday was just a registration and a "let the kids hit the ball" day. Tyler was all into it at first out in the outfield and one of the adult supporters was teasing with him. Finally I had him come in to bat. He hit the ball and immediately ran to third base! He was so proud and happy when he got there. But that is the beauty of this league there are no rules, no outs and no set time on innings. Its whatever the kids can handle. When the next kid hit, Tyler ran back to home. Then he didn't want to play in the outfield anymore. He did go back out but just sat and wouldn't wear his glove or throw any balls int. He hit one more time and this time he ran all the way around the bases with one of the coaches chasing him - and yes he ran to 3rd, 2nd, 1st - then home. Maybe we will get him turned around by end of season. They play 6 games. His first game will be Saturday, but we are doing an overnight vacation to Marine Land this coming weekend so he will miss that.
Last night Owen and I went to Superman. FINALLY!!! He was in the hospital when it came out so he has been desperate to get there. It was a good a movie, and I think Owen got really nervous for a bit, when it wasn't looking so good for Superman.
Today was a get the house in order, groceries and just relaxing. Owen did go to his friends Seans for a few hours in the late afternoon. Jake, Ty and I walked down to see the goats down the road. And yes the fence around the goats is definately electric!!!! I wasn't sure, and told the boys not to touch it. But we were standing on the other side of the ditch next to the fence and it is a slope. Jake started to loose his balance and I was holding onto him, so his instinct was to grab the fence to catch himself. OWWWWWWW - yikes that sends a jolt through you! He kind of looked surprised and didn't miss a beat, he wanted to pet the goats more.
We walked back home and did some running in the sprinkler and now I have to finish washing Owen up, he has been soaking in the tub to clean his chest. It is really looking good, and starting to really ITCH bad which is a good healing sign. He may even be in good enough shape to go swimming when he goes to camp next week!
Tuesday he has a spinal tap w/ chemo and a bone marrow aspiration test. Tomorrow I will do a blood draw just to make sure he isn't in need of any blood supplies, if so they will do them as well on Tuesday.
Have a good night!
Tonight Owen went to his baseball game to watch. He is not up to playing - he is way to nervous of his chest. Plus he is not wearing his tube shirt that holds his tubes close to his chest due to letting it get air to it. So he only has a piece of tape around the tubes and they are then pinned to his shirt but they still flop around alot.
Chris, Tyler, Jake and me went for a boat ride. We just cruised around for a bit. The boat was running rough. The electric choke is sticking so Chris got it temporarily fixed but he will have to work on it some more. Ahhhh the pleasures of owning a boat! Jake ended up falling asleep for a half hour. Tyler and I fed some ducks that were close to shore where we were floating so he thought that was pretty cool. He ended up sitting in the bow on the way back to Papa W's and thought that was the best. The wind was whipping through his hair and he was just grinning ear to ear. He loves carnival rides and I think he thinks this is just like one big ride. But then Daddy turned the boat sharp to turn towards Papa's and he fell off the seat and whacked his head pretty good. Poor thing. He cried for a minute, but then Chris said - you want more boat and he was up and off to his seat and ready. He is a tough guy alright!
We stayed at Papa W's for a while and caught fire flys, and then headed home and picked up Owen. He was tired and ready for bed. He helped 'coach' at the game tonight so he thought that was neat.
Tomorrow I think he is going to going fishing with Chris and Papa W. He was going to go to his friend Dan's baseball game but I think he is tired of just watching baseball. We'll see what the morning brings.
Tyler, Jake, me and Grandma Pat are planning on going to the Throop park for a little party. They are having Moonwalks and a bunch of fun activities there for the kids tomorrow. Then tomorrow evening at 5 I have to meet some friends at the little leaque diamond. Tyler is signing up for baseball! There is a Champion leaque for kids with special needs so we are going to see how Tyler will like that. He has a great arm on him and he loves to hit the ball, we'll see how well he puts it all together!
Have a great night!
We packed up and headed out on the boat after that. Just a nice leisure stroll around the lake. It was a nice family day and we all enjoyed it. Owen drove the boat most of the time and thought that was the best.
Today we headed out at 9 to the hospital for his chemo treatment. This is the one he has to get pre-medicated for due to the reactions so it takes about 5 hours to get everything in him. He slept most of it. Between the meds that make him sleepy and just the business of the last couple of days he needed it. I took off his bandage there for the NP and doctor to see. We all agreed that it needed air and not to keep the bandage on it. Each time I pull that bandage off it will pull up any healing that has started. There is no infection so the air will be good for it. Once the skin dries up and heals a little bit - we can put the Silvadene cream on it that is usually used for burns. 'Luckily' we have lots of that unopened from when my husband decided to burn his face off a couple of years ago! Owen says it hurts right now - I think it is the pulling of the skin as it dries. He is very sad today and quiet but he says he is just sad about his chest and just wants it to get better he doesn't like it hurting. So hopefully it will start feeling better faster now.
I had golf night tonight and did alright - but I think we were all dragging - it has just been a long weekend and it is time for a rest. Owen called me a couple of times crying because his chest hurt. Chris was almost home though so I didn't leave - I didn't want to leave him with the sitter if he was going to be so upset.
He called me again though as I was almost home - he just needed me - so now I am here and he is okay and I looked at his chest and it looks alot better already - not so raw.
Have a good night!!!!
Owens chest is looking better already - very sore and the skin isn't healing yet but it has stopped oozing - so the healing has begun! He gets very nervous when we are doing the soak and rightfully so. I get nervous every time I go to pull the bandage off - I am afraid it will stick and hurt even more. It does stick a little in the more open spots but less and less with every change.
So out the door we go to the Carters camp for burgers and hotdogs. After dinner we packed up to take the family maiden voyage on the boat before heading down for the fireworks. The boys loved it!!! Tyler just grinned ear to ear and mouth wide open in excitement. Jake had the frozen cry and squeals of delight coming out. Every time Chris slowed down to just cruise and to check out the lake houses Jake would yell "Go fast Daddy"! He doesn't understand you can't just go fast all the time or you r gas will be done in no time - boating is for cruising too. Owen and Dan sat up in the bow and loved riding the big waves and bumps - they got wet a few times to their delight.
Then we headed down to the foot of the lake to anchor for the fireworks. Ken and Sue met us their on their Boat and the Daly's and Botendaris - so we had a four boat party barge tied together. Lots of fun! After much anticipation the fireworks started. Jake was absolutely thrilled - they were soooo cool. Tyler was not so thrilled. He didn't like the loud bursts. He loves the quiet ones but got very upset on the load booms. They weren't that loud but his ears may be more sensitive. He freaked out last year at one of the double day games with the fireworks until we went in the house ( we were at a house next door to the game) and then he was fine watching them. So I said we need to get the headphones to muffle out the sounds, because he loves the lights!
Back to Carters Camp. I ran home and got a bunch of sparkles we had from last year - so the kids were thrilled. Almost set a few chairs on fire but thats a different story..... Ken had a HUGE bonfire going. It was hard to roast marshmellows - you couldn't get close enough! We didn't stay long - it was late and didn't want to do too much more - I could see it in Owens face he was ready to go. WOW its midnight already. So home we go - I have to do another bandage change before bed. I think we were all asleep in two minutes.
Today we are going to 'Aunt' Annas to watch the parade and have a cookout. Megan - her daughter is home from her senior year in Japan - it will be great to see Meg again and thank her in person for all the wonderful candies and Oragamis she sent thinkin of Owen! Welcome home Megan! Then I think we are ready to just rest....
Owen got a beautiful postcard from Vancouver, BC today from Auntie Connie and Uncle Bruce - oh how we miss going out this year!! But he got a batman sweat band and a few Canada tattoos for Canada day (which was July 1st) but we will wear them today for our July 4th celebration. Thankyou!!!!!
Happy 4th of July everyone!
Meanwhile the party starts at 2:00. I didn't want to cancel, Tyler had been pacing all morning looking at his cake and presents. Plus he had seen his new car on the porch and was being very good about it - he understood it was for later. What a sweetie! So much for the surprise though.
So we get to the hospital and they take Owens blood and draw cultures just to be sure. His low temp is gone by now which is good. So the doc takes a look at his skin along with several nurses... I think we turned all their stomachs... it looks very nasty!!! Owen has counts though which is great. So they teach me how to do these soaks in a special solution. Then a large stick free gauze is put over the top and tape applied to his good skin. I have to do this 4 times a day, and within a few days it should start clearing up.
I call home to tell Chris we are going to be headed home shortly - just need a prescription from the doc for the soaking anitbiotic. Then comes the next news... As people were arriving everyone was outside. Tyler got in his new car - which is on the front porch which is four feet off the ground. Mom and Grandma Bonnie and Aunt Shelley were talking out in the front and saw him but didn't really think anything until.... Tyler stepped on the gas pedal and Vroom off the porch he goes... jumps the steps and a bush but a wheel catches the steps and turns the car over and Tyler came tumbling out! THANKFULLY he was fine but had quite the scrap on his face by his eye. He didn't even cry.. his lip came out and he was more shocked than anything. Everyone from out back had come running out front from the screams... They checked Ty out really well and determined nothing was hurt. Chris asked Tyler if he wanted to ride in the car and a big Yes came out!!! So off he went on the grass this time and safely.
Owen and I arrived home at 4 and all was well. Food was almost ready ... everyone pitched in and cooked the food and had things ready. Thankyou everyone for pitching in and helping out save the day!!! I had promised Tyler french fries earlier as I had to run into the store and totally didn't think about it after the whole turn of events with Owen, he was so upset when I got home. Aunt Missy saved the day and ran in to get them for him... Thankyou Missy you are the best! He was soooo happy when she returned. He was out in back on his car when she returned, I held up the bag and he jumped out of the car and ran as fast as little Tyler runs all the way across the yard. He was so cute! We ate and Tyler opened presents and of course cake and ice cream. The day ended up fine and everyone was happy. I will post pictures as soon as I get the cord to download from the camera - it didn't come with it. I am definately ready for bed now, what an exciting day.
Owen had a very yucky day. His stomach has been off all day. He slept till 10 and then was back asleep by 11 and then dozed on and off all day. He finally ate something around 4, and at 6 he came downstairs and said he felt a better, and wanted to get out and do some fishing, so we went over to 'Uncle' Billys camp were he attempted to do some fishing off the dock but within an hour he wanted to go - he wasn't feeling so hot again. So he is back up in bed and is running a low fever 101, so the watch is on and hopefully it won't go any higher.
So Tyler and Jake are in the tubby - they are barely recognizable as children. Hopefully they come out sparkling.
I am hopeful that we will have an uneventful night and Owen just needed to rest more and he just got the itch to get up and going a little too early after having had the chemo and not feeling well.
Have a good night!
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Owen has had an upset stomach most of the day. He hasn't felt like eating or playing or anything. The good news is his level was .28 at 11:30 (he has to get to .2) the next draw is at 5:30. It will take an hour or more for the results to come back. I told Brooke not to get my hopes up - every time we get sooo close to the going home level and then it goes up!!! So I am not getting excited ( ok maybe a little but - i am not packing or anything.)
I will keep you posted - but otherwise a lazy day. The nurses can't believe the difference between yesterday and today. Last night Owen was working at the nurses station, answering the phone and keeping track of where everyone was. He fired two people though, he was having fun till Mom forced him to bed at 9:45, I think he was asleep in 15 inutes though for all his protests of not being tired.
The poor little guy next to us (1 year) had a rough night. He was up on and off most of the night crying, then this morning his mom could not get him to settle at all - even climbing in the crib didn't work! He ended up having kidney failure and is in ICU right now. Poor thing... please say a paryer for little Miles.
I had a dentist appt. this morning. It actually worked out perfect - it was suppose to be next wednesday and I called to cancel it because I am taking a vacation day that day to go to the zoo and they asked if I could come in on thursday morning. I started to say no - we are in the hospital - but wait.... my peridontis is two blocks from the hospital!! So in I went this morning. I then ran to Carousel mall to get our new camera ( yes the other one was officially thrown out - however the two guys who cleaned up the camp felt so bad they did it they gave me $$$ for the camera. How nice was that!
So I got the camera, got Tyler a b-day gift from Owen & Jake and got the game 'Zathura' to play with Owen. We have been looking for the game - named after the movie and haven't been able to find it, it was at the Discovery STore - I love that store! By then Owen called me and he wasn't feeling good - so I headed back to the hospital. I think it was more being a little lonely - I was only gone a couple hours and he was sleeping when I left.
So by the time I got back and we got the game set up - the child life volunteers were on the floor - so Owen didn't need mom anymore he had people to play with!!! We did play a couple games of Zathura and it was fun.
A bunch of us ordered out Chinese tonight. And after a delicious dinner I am relaxing a bit in the room - Owen's beloved Brooke is on tonight so he is in his glory being her shadow. He is at the nurses desk now "booking appts" for everyone. He is quite the 'helper' for them I am sure.
I can't ask for anything more - he does well coming up here and gets along great with all the nurses and all the families. It makes for an easy time here.
I did see tonight hanging in the Nurses breakroom an annoucement of a girl Brittany that earned her 'angel wings' on June 13th. Brittany went for a Bone Marrow Transplant in April. She was here many times when we were and I have talked with her mom alot about the bone marrow and answered questions for her. Brittany was just a great girl and always had a smile on - I think she was around 16. My heart goes out to her family.
Brooke felt bad that I saw that - but I was okay. I want to know about the other families I meet. I know the risk is there that something could happen but you become connected to these families. I follow several via caringbridge that I have met in Syracuse and many that I have never met all over the country, but we feed off of one another, we have a bond that only families going through a life of Cancer can know about. So to have that part of the support arm - you have to know the risks for your emotional being as well.
Well I am out to rescue the nurses!
Have a good night!
So we headed over around 12:30 and he is getting pre-fluids now to prep him for the chemo. Chemo should start around 5:00 I think.
We are in room 7608 and phone# is 464-3686 - I have also updated it below.
We had another pet issue! Spidey - Owens lizard escaped somehow!!! Not sure how that happened the lid was on his cage and all appeared well. I just happened to notice last night when feeding him that I did not see him and hadn't for awhile. I started lifting his plants and he was nowhere. So I don't know how long he has been missing for!!! I don't always look for him when spraying his cage or feeding him. Today he was sitting on top of Owen's playstation. But Owen is afraid to touch him and you know Grandma Pat isn't touching him!!!! Owen finally got the courage to hold down his tail and then him and Grandma scooped him into a cup and back in his cage. Boy I wish I could have been there to see that!!!!
So all is well again and quiet!
Have a good night!
Today was uneventful BUT had the potential for another nightmare. Mom came in this morning and said "What do your dogs have out in the yard - a turtle?" What!? So out I go and sure enough Bo and Champ have quite the large turtle trapped in the yard. The turtle was quite brave though and was making his way to the edge of the yard. Each time a dog would paw his shell he would disappear for a moment and then come back out and start moving. Great now I will be going to the vet for turtle bites!! They wouldn't come with me so I went to get the leash to pull them into the house and out of harms way. But the turtle had moved to out of range of the invisible fence at that point and the dogs could only sit and watch. Bo finally gave up but Champ laid there watching long after the turtle disappeared into the hedgerow.
I will take Owens blood in the morning and HOPEFULLY he is ready to get back on schedule. I did hear from his NP and what she found out about Owen's protocol and the way the Methotrexate has been affecting him. This week is the last of this phase of treatment he won't get methotrexate again until the fall. This is what she noted and will be discussing with the doctor:
Course #1 of chemo was given 4/3
Course #2 was given 5/2 (delayed by 1 week for low counts)
Etoposide dose during course 2 was 2/3 of recommended dose because of
availability of etopophos.
Course #3 was due 5/22 Owen's counts had recovered by 5/27, chemo was given 5/31 because of the holiday weekend (delay would have been 5 days-but etopophos not given at full dose). Bactrim was stopped at this point.
Course #4 was due 6/19 - delayed due to neutropenia (greater than 1 week at this point).
The protocol says to decrease the methotrexate dose by 25 or low counts > 1 week, I also would think that we decrease the 6MP and the etoposide/cyclophosphamide given on week two of the cycle by 25 BR>
So we'll discuss this further with her and the doctor when we go in. Please pray we get back on scheule tomorrow!!!!
Have a great night!!!!!
We were almost to the green on 18 ( we still had to go through to #3 as we started on #4), when my cell goes off. It is Nicole (she came out to relieve Sam). Bo (one of the dogs) had a fishing lure stuck in his mouth!!! You know can anything go worse? So I told her we had 3 holes to go and would be home - to keep Bo in his Crate until we got there.
Then I had to get cute and try and drive the cart to grab Chris after teeing off and pushed on the gas from the passenger side and tried to turn the wheel quick to get around the fence...oops I didn't turn it quite right... and boom into the fence! Needless to say the fence was bent over - but luckily no damage to the cart. The owner said he wasn't concerned about the fence. Yep - Chris had to mention that is why he doesn't let me drive - I drive for the first time - and I get in an accident!
Well just as we were loading the car my cell phone rings again. Nic is getting nervous - Bo is shaking his head alot and breathing hard - he is scared. So we finish packing and home we go. Me, Leanne and Dad all held Bo - while Chris got the lure cut. It was a three prong lure, but luckily only one had gotten in him. Right through his tongue!!! It wasn't through the bottom of the tongue so Chris couldn't grab it to pull it through. You can't pull a lure out as it would have shredded his tongue it has to continue through the other side. Well even this was a big relief to Bo. He was licking and happier than anything. He even ate dinner so we figured he was ok to wait until morning to call the vet instead of an emergency call.
So 11:00 today I brought Bo in. They had to put him to sleep and push the piece left in out of the tongue. He has antibiotics to take for the next 5 days but she said the tongue usually recovers fast. No eating for him tonight though. Bo was very happy to leave. Now did he learn a lessen???? Probably not. I have put the tackle box high up on a shelf. There is about a 1 inch hole on the front of the tackle box and he somehow was able to get that lure out and into him.
So life continues to just be one exciting event after another! Can't wait to see what tomorrow brings!
Have a great night - hope you had a good laugh - if nothing else we must be a very entertaining family!
Friday Chris was out of work early and Owen and him went fishing for several hours. Owen has become quite the caster and fisherman. Sorry but he didn't catch the one he is posing with - Daddy did - but he caught alot of perch. They ate dinner over Papa W.'s when they came in. Jake and I played for a few hours while Tyler was snoozing. I rode my bike and he chased on the big wheel. I was Green Goblin and he was Spiderman -- yeah I think I have another superhero in the making. Then we turned the bubble machine on and chased bubbles forever it seemed. Tyler finally woke up and then we all raced our bikes in the driveway. After dinner - Ty, Jake, me and Champ (one of the dogs) headed to Pete's Treats for icecream. It was a wonderful night with the boys. Owen and Chris arrived home around 9:30.
Chris worked this morning for a few hours and then him and Owen were back out the door to Papa's fishing. Later I went up to Papa W's & Grandma Lee's because Chris wanted me to check out a boat for sale. It was our Old landlord on the lake's. He was home from Florida and was going to sell. He still owns the property (his house and the apt. we rented) but has lived in Florida for several years. So the boat has been dormant. We cut off the shrink wrap and it was dirty and a little mildew but otherwise great. It is a 1990 but low hours on it & a GREAT price. Chris cleaned it for several hours when we got home and it looks super. Now usually I would be saying NO CHRIS WE HAVE SO MANY OTHER THINGS WE NEED TO DO AROUND THE HOUSE. But I was feeling weak and agreed.
I think mostly my weak point comes from watching "A Lion in the House" I don't know how many of you caught the documentary - it followed several families over a six year period with kids with cancer. My mom and Chris both yelled at me for watching it. But I HAD too. It was so great to watch "our life" through other families. I hear them speak the things that go through my mind and live in the joy and terror of what are kids do and go through. All kids affected by cancer are ALL truly amazing!!! Their lives are turned upside down and they as well as the families some how learn to roll with and live life to what they can. It was horrible for me in the fact that alot of the families that they followed over the six years ended in tradgedy and that was the part that ripped through me. No matter how great today seems you DON'T KNOW what tomorrow will bring. So back to the boat.... yeah we need new windows in front, yeah both our sliding doors need to be replaced, yeah alot of screens need to be repaired, yeah I would like some landscaping done, yeah I have wanted a 'real' bedroom set for 13 years... on and on... but TODAY my kids are with me and they are young and they don't care about those things... they want me, they want family time, they want to be kids.... so yeah we got a boat. And we will live for TODAY!!!!!!!!
Thanks for checking in and have a great night!!!!
First I TOTALLY BRAIN FRIED AND FORGOT TYLER'S GRADUATION CEREMONY FROM 1ST GRADE!!! I am so upset with myself! It hit me when I got home and asked him how his last day was and he finished the big 1st grade.... oh nooooo when was your ceremony? I ran in the house and looked at the calendar... oh man!!!! Oh I feel so bad - I hope he didn't realize I wasn't there! He gave me a big high five for finishing. I just feel sooo bad.
Then Owen's counts are too low to start chemo. They have actually dropped down to 200 - so they are going down not up. They are having us wait until next wednesday to test again. I did email our NP just to raise my concerns with his counts taking longer to rebound each time. She said they are not worried about it - his body has been through alot with the transplant and all and may take a little longer to bounce back. She will run it by the doctor but doesn't think anything in his protocol will change. He is usually only delayed a week each time he has been delayed and they don't consider that a big delay.
We will still play the cautious side. Although she said we don't have to restrict him in anyway - what ever he feels like doing - but we will limit public exposure and places where germs are. With low counts he can catch something very fast and then fever will come and then a trip to the hospital due to having the low counts. He is going up to the lake tonight to spend the night at the Carters camp - Chris and I felt this would be okay to go fishing and stuff. But no walking in the lake and he needs to keep disinfecting his hands. Should be okay right???
Well let the summer vacation begin.... we need to plan out some time off and some weekends to do things. The kids all have different camps they are going to.
Tyler is in Freedom Day Camp July 10-July 21 and then July 31 - Aug. 11 from 8-3
Jacob is going to Dinosaur camp July 31 - Aug. 4
Owen is going to Camp Good Days (camp for kids with cancer) July 17-21 - this is overnight camp!!!
I have a few days here and there pencilled in for things to do - but would like to fit in a whole week or so of some fun time with the boys. Course I have to fit it in around their busy schedules!!!!
Have a good night and stay cool - we are headed to the pool!
I
**** See above - I have included information regarding a TV show the next two nights on PBS ****
Yesterday Owen said he got a little choked up saying goodbye to his teachers. He has had the same four teachers for 4 years!!! He is in a multi-age group which means he stays in the same classroom and each year they switch their primary teachers for their individual grade level things but do alot together as a group for K-3. It is a wonderful program and the kids really get a chance to bond with one another as well as develop great relationships with their teachers. The older kids re-enforce their skills when working with the younger kids and the younger love to learn from older kids. It is a win-win situation all the way around.
I want to dedicate today's page to the Cayuga Elementary School and Staff. They have supported Owen and our family in so many ways over the last four years. They have gone above and beyond what most schools would do. I can't tell you enough how the teachers would look out for Owen through school work, tutoring, being a friend and person for Owen to rely on. The school nurse was always there to inform us of illnesses. She KNEW Owen so well to know when his symptoms were real and when Owen just needed a break. The parents of the kids were also wonderful in letting the school or us know of any illnesses their child may have been infected with. The teachers visited Owen everywhere we went - in Rochester Hospital, The Ronald McDonald house, in Syracuse Hospital and at our home. They were there every step of the way. When I hear other parents talk of the hardships and fighting they have to do with their schools to work with them on keeping up I am just amazed as this has NEVER been a problem. Cayuga had the Cancer teacher from University come in TWICE to talk to the kids so they could understand what Owen was going through. Owen and I even did our own question/ answer session when Owen returned to school after his transplant. So no wonder Owen was teary eyed! I am too - I don't want to leave these wonderful people. If AJ Elementary is half as wonderful as Cayuga I am still in a wonderful place and I have no reason to believe they will be anything but the great school Cayuga was and be right there with us again. The school nurse at AJ is already following Owens site and learning about Owen - hope she is as good a detective on Owen as Nurse Jane was! Owen knows how to pull some wool over your eyes! We don't know who will be Owen's teacher next year but the schools will work together to pick the best fit for Owen and I have 100onfidence in their decision.
Well then there's the news for Mr. J - Owen says one good thing is he will still see lots of Mr. J because he'll be coming over to play X-box with him! So practice up Mr. J!!!
THANK YOU THANK YOU THANK YOU - Cayuga Elementary School, Mr. Jorgenson, Mrs. Vasquez, Mrs. Smith, Mrs. DeGraw, Mrs Holms, Miss Murphy, Mrs. Scozzari, Miss Schillawski, Nurse Jane, Mrs. Zerrillo, and oh that is only the icing on the cake of all the wonderful people there who have had a hand in taking care of Owen at school. You have touched our lives and Owens in a way we can never repay you for. Thankyou so much. Now I need to go get a kleenex....
Have a great night!!!!
We had a great fathers day. Owen and Chris went fishing for several hours in the morning, while I mowed the lawn for Chris - course it took me awhile to figure out the lawn mower ha ha. I finally had to call him - the switch I was fulling for a choke to start it was actually the switch to engage the blades! whoops
We then just relaxed at the pool all day - what a day to relax!!! Grandma Bonnie came over at 1 and then Dad and Leanne came over at 5:00 for a cookout. I think we were all exhausted from the sun and outdoors all day. I LOVE it though!!!!!
Owen's counts are too low to start chemo!!! His ANC is 346 and he needs to be 750. Below 500 is considered suppressed immune and we need to be on careful watch for fever. I found this out at 1:00 so I decided to leave him at his last day of school - he wasn't planning on going the rest of the week due to going to the hospital -s o now he will just stay home to rest up a dn hopefully be ready on thursday. He had alot of Neutrophils which is good and way be an indication that his counts are indeed on their way up.
I took the morning off to go to Tylers' field days at school. They run all sorts of relay races. It was alot of fun and Tyler really likes it. Of course he is a stinker while he was standing in line - because I was there. We had a lot of fun and evern 'cheated' just a little on the tug a war. Myself and Mrs. Checcini were ust giving a little direction to the kids (holy cow were those 1st graders pulling on the other end tough!) Well the teached on the other side caught us - so he jumped in our his kids side - so it kept going on and on as more adults jumped into help --- until the final straw two monster football players I think jumped in on the other side and we all went flying!!!!
Thursday was Daddy's birthday so we had a special dinner and of course cake!!! I bought a card from the boys that is so totally a male thing... it was a birthday card about poop. Yeah it described all the different varieties of it and the different names. The boys (all four of them) sat here reading the card and were hysterical. I think it has become the favorite book in the house! A boy down the road came down to play he is staying at his grandma's and Owne and him were playing. They got into a dodgeball game and Owen got hit in the chest. He was sobbing - I think it scared him more than anything but he has his tubes and the plastic pieces on it probably pushed into his chest hurting. He was fine, but I think it scared the other boy too - his mom came back after he went home to see how Owen was because Brandon was upset. All is fine - just a little scare and reminder that Owen may not beable to play as hard as he wants to.
Friday was Owen's field days at school. All afternoon they get to play at outside at various stations. There is jumping balloons, races, bean bag tosses and lots more. Owen came home from school a wee bit tired! He went right in to lay down and relax as he had a birthday party that night. Tyler has pool day on Friday - but for some reason he didn't want anything to do with going in the pool!!! My little fish boy - who I can't keep out of the pool. The only thing I can think of is that they were only in the wading pool and he was probably mad and wanted to be in the big end.
Friday night Jake and Tyler went with Nicole to see Kim Tortorici and Grandma Lea play baseball while I took Owen to his party. Nic said they were great and SAT and watched the game cheering Grandma on!!!
Owen's party was at Reesee's so they played golf and ate. He had alot of fun. Him and Thomas were the token boys with all the girls - but they didn't seem to care a bit. After the party we picked Tyler and Jacob up and headed up to the Carters camp on the lake. We had a bon fire - marshmellow and Owen and Dan fished off the dock till dark. Then the four boys ran and ran around the camp up and down playing the hunters with King Kong (this was Jake) and the Dinosaurs ( and thats Tyler) They had a blast! At 10:00 Tyler was getting tired and ready to go. I think Jake would have stayed all night. I think we are going back tonight for a cookout so he'll have plenty of more action.
Owen has a game this morning at 9 and then nothing but enjoying the day and probably lots of swimming.
Health wise he seems to be doing well. He has had a lot of bruising come out the last couple of days. It probably means his platelettes are dropping and we need his platelettes to be at 70 to start chemo. He was 45 last tuesday and the hope was they were on their way up not down, but the bruising might mean they are dropping. I hope we are not delayed again. His immune system numbers were great so I don't think that will be the show stopper this time - just the darn platelettes!!
Have a great day and thanks for checking!!!
Well at 1:00 they came and said the blood still had not arrived and was going to be a while longer... did we want to go get some lunch and come back? Owen didn't want to go.. so I went and made some phone calls and grabbed a salad. Finally at 2:45 the blood arrived and started!!! A little after 5 they moved us up to 7H the inpatient floor as the clinic was closing. So we went up to finish the last 1/2 hour. Owen had no issues with the blood. He started at one point to teeter around a fever 37.9 (38 is the magic number for fever). But luckily he stayed away.
At 5:45 we were on our way home. Stopped to grab some chinese for a quick dinner for Owen as the other boys had eaten. We arrived home at 6:40, time to change clothes, Owen to eat and we were out the door on the way to the circus. The circus was great the kids really enjoyed it. Tyler got very freaked out every time they did an act high in the air. Not sure why - if he was afraid they would fall or what. But everytime he would hold his hand up like 'Stop' and start whining and crying NO No No. But other than that - he was waving to the clowns and dogs, LOVED the elephants. Jake was thrilled with the whole thing - eyes wide open!! One of Owens favorite super hero's was in alot of acts - yep Spiderman was there. He even got my stomach turning with some of the stunts. At intermission we went down to have our picture taken with the yellow snake you see on the home page. Yes this was very very real!!! I was just going to let the kids be in the picture - the guy was like 'come on Mom you can do this' So in I went. I told him just don't wrap that 'thing' around me. He laughed and agreed he wouldn't put the 'thing' on me. The snake was actually warm and not slimy! The boys thought it was the coolest thing.
So it was late night. The circus didn't end until 9:30! Yikes - hope the kids aren't asleep in class today!
Owen has his class picnic today so I will be skipping out of work to go to that for a few hours. Hopefully the rain will stay away. Then tonight is 'sanity' golf night so probably no update.
Have a great day!
Later we went to the movies to see CARS. It was cute. Tyler got bored about 1/2 hour in. He was all excited at first because he has seen the advertisements, but it must not have been exciting for him. So I had to call Chris to come pick him up - there was no way he was going to sit through the movie. He just kept saying bye-bye and trying to get out. So instead of fighting the losing battle I gave in and sent him home.
Owen was able to play in his first baseball game tonight! It has always been too damp or cold for him to play in any of the other games - or we had just gotten out of the hospital. So for his first game he did alright. He got a double hit - well they over threw first so he got to go to second - but to Owen thats a double! Then on the next hit he ran all the way home! He was very excited and glad he was finally able to play!!!
He went to school today after fighting going this morning - said he didn't feel well. But I think it was more that he bought a Batman Lego set with some of his birthday money and has been working very hard at getting it put together. So he made it to school and did fine - no nurse visits or anything! He has only 5 more days of school. 4 this week and then monday next week and then counts allowing he will be in the hospital the last 3 days of school. He is bumming as "those are the best days of school!"
Have a great night!!!
John Tanouse who had his Bone Marrow Transplant on the same anniversary day as Owen just last year was the guest speaker to open it up. I was crying by the end of his speech. The memories of it all, the fact that we once again are here going through it... very very emotional. Owen then marched around on the Survivors lap as we all clapped and cheered everyone on. Then we ate some dinner and hung out at the Nucor Tent. We kept having to put up more tarps to keep the wind out and try and stay warm. At 9:00 we went over for the luminary ceremony which was also an emotional ceremony. We walked around looking for all the candles lit for Owen. It was still raining at this point and windy so the candles could not be lit, I was really looking forward to seeing this as I hear it is amazing. Dispite the weather it was a really great turnout. Ad Owen and I were looking at the bags he found one that said "In Memory Of.... " He looked at me and said "Mom... this is in memory of, that means they died - you can die from Cancer???" His eyes were all wide. I guess I always thought he kind of knew that, but it is nothing we have ever really talked about. He then said "I don't want to die!" Oh honey - that is why we are doing all that we do, that the doctors work so hard and how important it is that you take all your medicines and do what you do. Leukemia is one of the cancers that is VERY curable, so I don't want you to worry about this okay??? He seemed to be okay with that and we continued on and he has not mentioned it again! After this ceremony Owen and I said good-night and headed home.
So since we weren't camping there Owen wanted to still camp so we set up in the livingroom. Ahhhh - so much better! We were up early and back out the door at 6:30am, we picked up breakfast pizzas and a big jug of coffee and headed down to see how the campers made out. They said it was a very cold, wet and long night with minimal sleep. They were very happy to get some hot food and coffee in. I began to do laps again. At 9:00 they did the final ceremony and then we all did the final lap and headed home. It was still raining this morning so we were again wet and cold by the time we left.
Now for my very sad news - I don't know if I have any pictures!!!! I brought my camera back this morning - it was in the coffee supply bag. While we were out walking and the camp was picked up the bag was either A. Thrown out, or B. Put in with someone elses stuff Sooooo - I have calls out and am hoping that option B is the correct choice. So I will keep you all posted!
Owen raised $2555.00 (there is $$$ turned in yesterday that is not showing on the web). He finished #2 in individual fundraisers. We owe that to you our support team! We can't thank you enough for all you do. As John Tanouse said - with this money research can be done - and things like the bone marrow transplant are discovered and cure rates continue to increase. He also stated that the 3 things that keep all people affected by cancer going are: Faith, Family and Friends and I couldn't agree more!!!! Support is the most precious thing a family with cancer can have - with out it you can spiral down faster than anything - so THANKYOU ALL OF YOU - for keeping us going in a positive mode - WE LOVE YOU ALL!!!!
I have another thing I want to throw at all of you... I think we are going to get rid of one of the boxers. This is very sad... but three dogs is just too much and with the amount of time we are gone it isn't fair to the dogs either. The two boxers (both male) are starting to fight. It is more the 1 year old that keeps trying to show he is the leader and goes after the little one. I have heard this - that two male dogs does not always work out due to this. A co-worker who is a boxer LOVER and lost his boxer two years ago tried to take Bo last night. He has a 6 year old dog at home though so it depended on whether they would get along. He picked him up at 11:30 - but he called me as we were headed home last night - and Owen and I went and picked Bo up. The two dogs got along great all day - but when it came time to go in the house their dog wanted nothing to do with sharing his home with Bo. They were very sad as they fell in love with Bo immediately!!!!! I was sad too as they are very much a dog-loving family and would have been a great home - which makes me feel alot better. Soooo if anyone knows of someone looking for a dog please let me know. I don't really want to put an ad in the paper - I want to KNOW the family that Bo goes to so I am comfortable with it. We decided on Bo as he is the little one and Champ has already had a shuffling of homes. Bo is not shy and loves everyone - where Champ is very timid of people. Bo would transition much easier. He loved yesterday - felt like he was 'King for a Day' they spoiled him rotten and watching the family with Bo made me so sad they couldn't keep him as Bo was thrilled running from one to another the whole time we were there last night kissing everyone. Bo will be one on July 7th. He is house broken and crate trained. He does still chew things though - I think mostly he does it when he becomes bored. So it will definately go away as it does with all dogs.
The event kicks off at 6:00 for the Survivors lap. Then from 9-10 are the ceremonies and the luminary candle walk. Everyone is welcome to come down and hang out with us, even walk some laps if you want! We welcome all of our support team!!!! The event ends at 10am the next morning so come down and see how we weathered the night! I think it will definately be a nap day.
So I probably will not be updating at all tomorrow but will take lots of pictures and share it all with you on Saturday!
Thankyou again for all your support and have a good night.
Golf was good tonight. I called before I left to go out and it was just a fine mist of a rain and was almost past. It sounded like the girls were all coming. We are a REAL fair - weather golf league, we don't golf in any crappy weather! So off I went - called my partner and we both showed up. Turns out me and Mary were the only ones there!!! I guess the other girls called back shortly after I had called and changed their minds and weren't coming. So Mary and I had a nice round of golf - started out really bad ( you know that double digit score - ouch!) But ended up well. It really never rained. There were a few holes when it started to mist, but it was warm and really wasn't like rain at all. So we enjoyed ourselves and I am glad we had not cancelled!
I stopped at Wegmans on the way home to pick up some 'camping' snacks. I got all the fixin's for Smores - gotta have that! I have the agenda for the Relay for Life and there will be stuff going on all the time. Looks like a fun night!!! There is a dodgeball tournament from 12:30am - 2:30am - oh my - we will have to take a nap to participate in that! At 2:30 is a Drag-Queen relay. Now you know I have to see how many men are participating in that!!!! But there is music and activities the whole time. Owen and I are getting very excited!
The donations are still rolling in - what can I say - you are all just AWESOME!!!!!! Thankyou so much.
First we had a checkup and all looks well. His lungs even sound clear! We are still going to do some pulmonary testing probably some time in the next couple of months. Then off to the TV room to settle in - start of all the pre-medications and then the chemo started around 11. Owen was sound asleep by then. All the pre-meds (mostly the benadryl) knocks him right out. His blood pressure rate was dropping during the chemo - not fast or a tremendous amount but enough for a flag to be sent up - the nurse contacted our Nurse Practitioner and she came in - we were just going to keep going and watch him - taking vitals often to watch. After the chemo finished his blood pressure came right back up. Then the second chemo went through - Owen was back awake now and feeling good. We finished up around 2 and were back on the road.
We stopped at work for a little bit, and were home a little after 4:30. Owen and Tyler went swimming tonight. Tyler was very upset at first - thought the water was too cold (71), but Chris pulled him in and got him use to it and he was off - my little fish! I had to change Owens bandage again tonight. Anytime he goes swimming his bandage has to be changed to prevent infection. The chlorine from the pool has to be cleaned off his body and hickman area. So this could be a very busy summer with bandage changes!
Owen is back off to school tomorrow and hopefully until the end of the year, which for him - his last day will be the 19th, as he has to go back in-patient the last three days of school. Next week I just have to do a blood draw on tuesday to make sure his counts stay good and he doesn't need any transfusions. Then I will do another one on the 19th to make sure the chemo is a go on the 20th.
Have a great night! Tomorrow is 'sanity' night for me (golf).
He had a good day today and went to school. They had their field trip to Cook Forest. It was a big nature walk. Owen said it was hard work and he was very tired when they got back, but he made it through the day and without a trip to the nurse's office! Yeah! He does get tired much quicker than before - not that he was ever the big high endurance boy - but definately can see a difference in how much he does now.
They had moving up day today - and got to go to AJ School. Owen will be switching schools next year and hitting the big 4th grade!!!
Tonight I made a big chalk road and town on the driveway and the boys loved cruising all over. They all had their own houses along the way with driveways to get off the main route. They had a lot of fun. After dinner we went for a quick icecream ride. I had told them we would go for ice cream and then oh how time flies! It was 8:30 by the time we finished dinner! So we ran off to Green Shutters for a quick cone. Owen's friend Thomas was playing ball across the street - Owen spotted the uniforms, so we ran over just for the ending of the game.
Tomorrow is a long clinic day. The day will start with me being at the docs at 7:30 - I have to have blood tests to see if my B12 deficiancy has evened out. I found out in January that I was extremely low. I went for shots for a while and am now just on B12 vitamins - so we'll see how I am doing. I am still very tired alot, but I can't say that is all from that - I at least don't look as washed out as I did before.
Then we need to be at University at 9am. They will have to pre-med Owen to prevent him from having a reaction to the chemo. So due to this it makes the 1 hour infusion into a 4 hour infusion! Thats better than him having a reaction any day!
I'll check in tomorrow and let you know how we make out!
Owen has crossed the $2000.00 mark on the Relay for Life fundraiser! Wow - I would never have thought he would have raised this much. Nucor is donating $2500.00 and he has almost matched it! THANKYOU ALL - YOUR SUPPORT IS SUPER!
Owen had a quiet day and then last night his friend Sean came over around 7 for a couple of hours. Sean brought one of those dance mats - you have to keep up with the beat and do the leg movements shown on the screen. Oh my what fun!! And what great exercise!!! The kids were going crazy. I think next time we will need to set it up downstairs - it sounded like they were coming thorugh the ceiling! But what a great way to get the 'video crazed' kids MOVING!
Chris steamed cleaned all of our rugs - so hopefully all those evil germs still hiding in our house are gone! Tyler seems to be feeling back to normal again. He is eating and drinking and looks good. YEAH!!!
Tomorrow Owen has a field trip at school to Cook's Forest - a nice walk in the woods. Hopoefully the weather co-operates and he is feeling up to it. I think he will - just wondering how he will do with the walk in the 'rough' terrain.
Above is a picture taken at the hospital for Paiges Butterfly run. The caption says:
Owen, 9 of Auburn was diagnosed with both acute myclogenous leukemia (AML), and acute lymphoblastic leukemia (ALL) in August 2003. A bone marrow transplant was successful, but 27 months later, the ALLhas returned. Owen has two years of chemotherapy ahead of him, which will include intensive in-patient treatments every three weeks. The day this picture was taken, Owen was scheduled for a spinal tap, bone marrow aspiration, and four shots. An amazing kid, Owen casually described the following day: He'd have a backache and head ache from the spinal tap but he grinned, "that means I can lie on the couch all day watching TV and drinking as much soda as I want."
Yeah that sounds just like Owen!!!!
Have a great day! And again THANKYOU EVERYONE on the donations for Relay for Life!!!
The boys were thrilled to see me! Tyler is doing better but really not eating still, although he is drinking good. So hopefully we are all on the mend again????
Owen had lots of supplies sent home. Due to it being swim weather now - he has to have his bandage changed every night if he has been swimming at all.
Now I am ready to go enjoy some outdoor time with my boys!
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We are still here. His levels jumped UP again last night. They were taking a blood sample at 10pm. He was at .25 at the 4pm draw and has to get to .2 It takes like an hour to come back to we wouldn't have been able to leave until like 11:30 - but sleep in you own bed? Yeah I think we would leave. The results came at 11:30 - He was .51!!!!! WHAT??? How does that happen. I mean last time he increased a 'bit' after being low but this was huge! The Doctor was called because that was quite a jump backwards. Owen is already being double hydrated with fluids and the 'rescue drug' is given every six hours - so she wants to just see what he is at in the 4am drawing.
Up this morning and out to the nurses station. ...And his level is... .21! Arghhh has to be .2 The nurse said they are going to ask Dr. Cherrick what to do - but I inagine that after last night jump up she will wait until we actually hit the magic number. Not so bad it is 8:30 and the draw will be at 10 so should know the results by 11:30 or so.
I'll let you know how our day progresses.....
BTW - Owen has now raised $1715.00 for the Relay for Life and is the #2 Fundraiser - you people are AWESOME - THANKYOU!
He picked right back up where he left off though. The morning started with squirt gun fights. Well that is until the nurses had to end the fight between him and Barb the CT - they were getting the floor soaked!!! Owen went off to school at 11:00, and then back down at 1:30. She has a website game she has been working with Owen on and he loves it. Some are I spy organization - get you thinking sites and others are fact site.
Owen returned and had his tub and is now playing with Dominic on PS2 in Dominics room. As soon as I finish I am going to get him and we are all going to play SkipBo.
Tyler does not feel good poor thing. He is going up and down today with a fever. He took his antibiotic fine - but when he started spiking he refused to take the motrin. I thought I would have to drive home to give it to him - but mom said he fell asleep and he is down to 100 VS over 102 when she called. Chris should be home semi-early tonight and Tyler won't fight him - so hopefully his fever can be brought down to nothing.
Well have a good night!! Thankyou all of you donating to the Relay for Life Event!!! That is wonderful!
I left around 1:00, Tyler was sick at school. I was hoping he was on the mend - he seemed good after this weekend and I thought he got over it on his own this time no antibiotics! But yesterday school said he was very lethargic all day. He came home and went right to the computer to play, went for icecream with the sitter and Chris said he acted fine all day. So off to school he went today. The school called and he was really out of it today and wouldn't eat or drink. He has been really bad about eating lately but that never means anything as Tyler can be very on /off with his eating anyways, but has been drinking like crazy. So after from 8-1 he had not drank anything and not gone to the bathroom there was concern. I met mom at the docs as I was nervous - maybe something really was going on. The doc sais his lungs are clear but he had a very large nasal blockage which would cause him not to eat and eventually quit drinking. His head was very cool, but he thought he felt a little warm on his back so took his temperature - 103.4!!! That took us all by surprise! The doctor said you would never guess it looking at him - and if his back hadn't felt warm he wouldn't have even taken it. Wow I can't believe he was that hot - poor thing. So Tyler is on an antibiotic. I ended up taking the boys home - they were both crying at the car that I was leaving. So I said I would spend the time to take them home - Mom could get the medicine and I would meet her at the house.
We started out and Jake kept saying he didn't like the squirrel - I had no clue what he was talking about! Finally tears streaming down his face and in hysterics he said the squirrel was on him! I looked in the mirror and a flap from the seat was touching the back of him - must have felt like a furry squirrel!! So I pulled over and got his seat fixed - much better! Tyler asked for a drink so I then stopped to get him a drink. Then as we pulled through Auburn he asked for french fries so I went to McD's and he ate about 1/2 and a few sips of drink.
We arrived home and he became very sad and upset that I was leaving. Oh how the heart can tear!!!! I had to head back though.... I arrived back at 4:30. I had called to tell them I hadn't deserted Owen and was on my way back - they told me Owen wasn't here - only his twin brother! I got back and Owen was riding down the hall in a wheelchair pushing his IV pole with Mira chasing in a car. So great to see!!!!
So I guess everything works out, and Ty can start to feel better soon.
Have a good night!
P.S. For those of you who tried to donate to Owen on the Relay for Life site - his name had disappeared for some reason but is back now.
Owen finally was loosing steam and wanted to rest and watch a movie. He was hungry for some pizza and wings. So I had no problem leaving and walking up the hill to the pizza place. It is gorgeous out and I love it!!! You will never hear me complain about the heat.
I even went swimming yesterday! OK not swimming - but I jumped in ONCE! It was only 69 degrees. However I was shoveling landscaping rocks and was quite hot. See I told you I don't mind the heat - whenevery one else is looking for shade I find an excuse to be in the sun! Owen went fishing with Chris - they were jigging - so he said that was alot more fun than just sitting there. He of course came home and went swimming right away. Still mostly just jumping in and out but he did do some swimming. Hopefully be this weekend the water will be great.
I posted a paragraph above concerning Owen and My participation in the Relay for Life program coming up. If interested in sponsoring our team please read the above paragraph and click on the link to be taken to the website. Thankyou!!!!
Looks like a quiet night - just some board games and fun!
Thanks for check on us!
I ran to Lowes to get flowers and soil and left the boys home... not sure how I escaped without any but it was nice taking my time to look over what I wanted to get. Back home and Tyler and Owen were both sleeping. Good! Tyler seems to be feeling better. I decided not to take him to the docs.. he is still stuffy but his fever is gone and he is acting fine.. I'll see how he acts this morning. So out Jake and I went to plant flowers. Jake is a great helper, he will work on anything. He was thrilled to shovel the dirt into the pots and then put the flowers in. Tyler came out near the end and he also helped.
I filled up the little pool for Tyler and Jake, but Tyler put his foot in before I had added any hot water and totally freaked out. Then even after I got the temperature warm he would have nothing to do with it. Jake was in from the start - "Its just a little cold.. wanna come in momma?" Brrrrr - it was freezing no way. Owen came out and decided he would go in. So he changed into his suit and shirt. He is going to wear these IV smim shirts this summer - he has to be very careful in the sun, he will be much more prone to burn and skin cancer being on chemo. He only lasted a few minutes and said he was bored... could he go in the big pool? I said it is freezing Owen... well he went down and checked the temp... 63 degrees. He says thats not bad he's going to go in!!!! Sure enough.. as always Owen has to be the first in the pool and he was again this year. He jumped in about 5 times and he was done... he didn't want to swim it was too cold for that but not bad just to jump in. He tried to convince me to jump in... he just wanted to see what I thought of the temperature. I told him I could tell him what I thought of the temperature sitting in my chair on the deck... it was a no-way your mother is getting in there temp!!!
Owen then got this fish out that he had bought for the pool with some of his birthday money. It was really cool. The fish swims around the pool and you have a fishing pole to try and catch the fish. If the fish feels the line or touches a wall etc. he starts to swim faster to get away. The boys played with that for a long time. Its really hard to catch the fish. There are 'training' guides to help guide the line into his mouth but after the first time catching him when we threw him back in they fell out and nobody wanted to dive in and get them!!!
We headed over the the neighbors after that. They were having a memorial day party. The boys had a blast playing with the other kids there. Jakes feet were black when we left from running around the yard and in and out of the sand box. They were said to go but we didn't want to over do it. It was starting to get chilly and that meant it was time to get inside.
It was a beautiful day!!!!! I thought today would be more of the same but it seems to be ready to storm any minute. Hopefully it will clear off so we can have another outdoor day.
Tommorrow we go back to the hospital for Methotrexate so we'll be in tuesday - thursday or friday. I'll update from there.
Happy Memorial Day to you all.
I took Owen to his baseball game this morning just for the team and individual pictures. It was still cold out and drizzling rain. Even though his counts are coming up we had already decided this weekend was a no-go on the game just to be sure - and then with the weather that sealed it. So pictures and we were on our way. Good Luck Cubs!!!
I can't believe how cold it was! What happened to it turning nice today????? Tyler is not feeling well AGAIN. He came home wednesday from school and we kept him home thursday but that was more for labored breathing - he is back on the neubulizer and his nose is running. Today he was burning up with fever by 1:00. The docs office closed at noon so will have to wait another day and decide if he should go back. The Motrin knocked him out pretty quick and he slept for a few hours. Once he woke up we went outside and played 'Tennis' - We have these HUGE tennis rackets and a plastic blow up ball. Jake and Ty had a blast hitting the ball.
After dinner Chris saw some deer in field across the road so the boys were all checking them out. Jake came to get me to show me. Chris and Owen came in and so Jake, Ty and I were watching. Then Jake leans over the porch and SPITS! He looks at me and says "Did you see that Mom" with a big smile. UMMMM - yeah Jake I did... did you just spit? "Yeah cool isn't it?" So I wander back in the house and look at Chris and ask him if he taught Jake to spit. He smiles and says "Yeah - he's a boy its time to learn that" OH MY GOSH - I have 4 little children here. My 3 year old is now spitting!!! I go back out on the porch and Jake continues to show me with pride how well he spits. He then tells me - ONLY outside NOT in the house. Well thank goodness Chris at least mentioned that part to him!!!!
We then went back out to play with this rocket that Owen got for his birthday. You pump it up with air and then it goes really high in the sky - 2 planes attached then breakaway and coast down to the ground. Sounds cool right? Well the planes broke on the first landing!!! The rocket works great though and goes really high with out the planes attached so it works out. After a while Owen was ready to try out Tennis with Daddy. Tyler, Jake and I kept doing the rockets. Tyler absolutely loves them and 'runs' after the rocket when it lands to reset it for another blast off. He was so cute and seems to be feeling better. We'll see....
I am letting Owen go hunting in the morning with Uncle Steve. It is suppose to be nicer tomorrow morning so as long as it isn't bad out I will let him go.
So we are wrapping up our quiet / busy day and looking forward to the warmer weather tomorrow. Have a great night everyone!!!
We were free to leave - as long as Owen does not spike a high fever they said he was okay to go home. I will continue to administer the antibiotic by IV at home until Tuesday when we will go inpatient again for his chemo. I don't have to pre-test his blood this time because he jumped from 300 yesterday to 900 today after only two antibiotic pills!!! They certainly jumped to work on what ever is infecting him. The thought is that if his counts jumped this much in one day then by tuesday he should be great. He has to be at 750 to start so he is already there - so as long as he doesn't get sick over the weekend there should be no issue. But they would like a few days of antibiotics in him before giving him the chemo.
If it ends up being his line infected then chances are they will remove the line and then do surgery to put a different port in. Since he is going the standard protocol for ALL he doesn't really need the double lumen port, the other type just slips under his skin and they have to access it with a needle as needed for treatment. But he would have less restrictions. He wouldn't have the lines hanging out of him to have to worry about, I wouldn't have to do flushes and he would be free to swim in a pool or a lake. With the hickman only chlorinated water is acceptable. So that would be easier.... day at a time.
Owen was feeling GREAT today though. They were laughing at him and saying he certainly didn't look sick or act sick anymore!!! It was great. Back home and still going to be a low key weekend - don't need him to over do it and end up missing chemo again.
Owen came home to another birthday present from Aunt Susie - $$$ the perfect gift! Of course Mom the spoil sport will only give him some of it.... Thankyou Aunt Susie - sorry you weren't feeling good to make the party we missed you!
So we are ready for the beautiful weather to begin!!!! Have a great night!
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10:00 AM
Here we go again….. doctor office just called and the culture they took yesterday is positive for infection. SO now they have to take a regular blood draw off his arm and again from his line to verify if it is his Port that is infected or inside him. IF it is his port they will have to remove it as this will be the second time it became infected. Nurse wasn’t sure if they would do the tests and release us again since he is feeling pretty good or keep us…..
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We are HOME!!!! I still feel like I am dreaming. We headed over Owen's fever was low 100.6 but 100.4 is the magic call in number. Due to his low ANC (300) they needed to see us. So we arrived - they checked him in and his fever was actually down 99.9, they took cultures and then Dr. Souid came in to see us. Owen was still crackling pretty good in his lungs. I told him that the pediatrician put Owen on the neubulizer on monday. He was MAD!!! He couldn't believe we were sent to a pediatrician for his cough... so I had to back him up and tell him it was Owen's regular 9 year checkup and she heard the crackle and prescribed the neubulizer. She had asked if I knew if it would interfere with any of his meds which I knew it wouldn't, and didn't think any more about it. He said still NEVER NEVER NEVER just put him on that for a crackle in the lungs. These kids (leukemia) can develop pnuemonia very quickly and they need to evaluate them right away. So lesson learned. Owen has been coughin for weeks but always has been clear so I didn't really think about it. So anyways we went off to X-Ray, Dr. Souid said it would depend on the X-Ray on our next step, but it didn't look good for his x-rays being clear. SURPRISE! They WERE clear. So he prescribed an antibiotic, and to continue the neubulizer. If he spiked high fevers or his cough became worse over the weekend we were to call. Otherwise to come in on Tuesday for a chest check. If that was clear then they would check his blood count to see if they could begin his inpatient chemo that day. If he is still crackling then they will repeat his x-ray.
Tyler seems to be going down more. He is VERY grumpy and his nose is going like crazy. So even though we are home it will be a 'quiet - nurse everyone back to health' weekend!!!
So yeah so good to be home!!!!
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The blood draw went smooth except for the fact that I got blood all over my white pants!!!!! I was carrying the stuff back downstairs and still had some blood in the syringe and out it came all over me! The good news is I started soaking the pants and it has come out!!!
Then I got the call that his counts are too low. He has dropped down to 300 from the 512 he was at. So that was good/bad. Looked like we would be able to have the nice long holdiay weekend to enjoy - but alas My mom called and Owen is running a fever now. So we will be leaving to head in.... I'll let you know as soon as I know anything.
Other than that - Owen had a good day. He is doing breathing treatments 4 X day as he was wheezing a little bit at the doc visit yesterday. He still has the same cough he has had for a while but before his lungs always sounded clear. So for now until we go inpatient he will do the breathers and then we will let the nurses / docs at University decide if he should continue.
So now that we are not going inpatient I will get to have my 'sanity' night tomorrow and go golfing. We are playing a 4 person tournament tomorrow with a banquet afterwards. I was bumming that I would miss our first dinner night.
I guess thats it for now - thanks for checking in!!!
But alas the results came in and he is too low. He is at an ANC level of 512 and he must be at 750. He unfortunately is at a level to close to the dreaded 500 immune-suppressed level for me to feel comfortable sending him to school either. So he is in limbo. No school, no hospital. I will take his blood again Thursday morning and they will let me know early morning if the level is good and then we will go right over to start on Thursday so hopefully he can get out for some of this nice long weekend - that is suppose to be absolutely gorgeous!!!! If he were still to low - I imagine we will try again beginning of next week. His hemocrit is at 7.5, usually they transfuse at 8.0 but since he should be going in later this week they are going to hold off unless I see him really dragging and think he needs it sooner. He is still pale and has pale lips but seems to be perky enough. He did get tired at school today and took a little nap in the afternoon.
Yesterday's family party was fun. Owen got alot more cool stuff. An underwater cruiser for the swimming pool, a new pellet gun (Uncle Steve of course!), an air rocket, more Japenese Candy (yummy) and a Disney Book signed by Japenese Disney characters (both english and Japenese writings!) and lots of money!!! He had too much money for my blood so much to his horror I only gave him $30 - the rest goes to his stock funds. Believe Owen you will appreciate it later. Plus he has so many gift cards I think it will be hard enough to control him not to buy a bunch of stuff he doesn't need. Money burns a hole in Owens pocket big time. Although I was amazed to find he had almost 80 in his piggy bank - he has been saving for the new Jaws game coming out Wednesday and I have very suprised to see he actually had it!!!!! He never ceases to surprise me.
Thankyou everyone (friends and family) for a wonderful birthday weekend for Owen!!!!!!!!
So back on delay - never like to get delayed - but it happens - so as our whole life is - you deal with it!!!!
Have a great night!!!
Jake, Tyler and I had our own special movie night. We went to the Gavras Center to watch Dora and The wiggles. They had a blast dancing and marching to the movies. There was popcorn to eat and we brought our own drinks. AFter the movies we went to Denny's for icecream. So the boys were very happy to have their own special night!!!
T
Saturday morning Owen was suppose to play baseball at 11:00. We made an educated decision that it was way too cold, windy and wet for Owen to be out there. He will be a fair-weather player this year (kind of how his mother plays golf)!! So he stayed at Dans for a while and came home at 1:00. Ready for his big kid birthday party.
We had a houseful (16) but it actually went very well. The kids started to play 'spin the bottle' as they were arriving- hmmm lets see where this goes. Whew the dares were nothing more than "you have to kiss the dog", "bang you head on the floor 5 times" - big relief. So once we had everyone there we started a 'Steal the gift' game. Each kid would end up with a gift in the end but it goes like this - I have a poker deck of cards - each kid was assigned a card. When their card is pulled they can: Pick a gift from the goody box, Steal a gift from someone else - or trade their gift with someone else (or the gift box) so that you only have one gift. They had a lot of fun and the giggles and excitement built as the stealing of the wanted prizes went around. We had pizza and wings - half the kids went out to play and half stayed in to play more games. Owen is getting so big and smart - he was staying in - he didn't want to get sick out there in the cold! So we played the traditional briday shower game - The objects on the tray and you have to remember as many as you can after I put the tray away, the 'Happy Birthday Owen' word game - find as many words as you can within these letters. Then all the kids came back in at that point for cake and icecream and presents. After that most went back outside and some stayed in to play with the new gifts. Around 4:50 Owen did put on his coat to go out and be out there to say goodbye as the parents picked up the kids.
He had 2 friends stay the night (Dan and Thomas). We played Skip-bo and Uno Attack and then I rolled off to bed at 11:00. The boys were up until 3:30!!! We all slept in until 9:45 this morning!!!! Wow I can't believe it! When I heard the stirring downstairs I was like - oh its too early and rolled over and looked at the clock - holy cow!!!
Today is the family party - so another big day - but a little quieter! So it has been an awesome weekend for Owen - and hopefully not over doing it! Birthdays are just hard not to over-do it on they are so exciting for a 9 year old ( me - I can do with out mine now!)
Have a great day!!!!
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Oh where do I start today at??? Everything is fine just a wild and crazy night. First I got an email from Owens teacher that Owen 'volunteered' for me to make treats for their Friday night late night this week. She figured she would give me a heads up (she knows Owen well) in case he hadn't shared this with me. All the level 4's (third grade in the multi-age group) get to stay after school and then they all go to the movies at night. Kind of their last hurrah before moving up to the middle school. Owen is very excited. So anyways back to the treats. I thought Owen wanted me to bring treats on Monday for his actual birthday. So I asked Owen about it and he wanted to bring them on Friday - blueberry muffins - because Mrs Vasquez wouldn't be there monday and he wanted to celebrate with her - how sweet! So I asked him when he was going to let me know about this - he just smiled and said "oops". No biggie I got the muffin mix today on my may home from work. Yes MIX - I am a box baker or an already made at the store kind of person!
So I get home and realize we had not gotten Dan a present yet for his birthday and he is going over to Dan's after the movies (pending he is still feeling good it will be a long day). So Owen, Tyler and I pack up and go to walmart. First we have to stop by Uncle Steve's he got a laptop and needed some help with his wireless card. So we make a pit stop then head to walmart.
We are checking out a gift for Dan and Tyler was pushing around a lawnmover and Jake riding on a little trike. Well Tyler decided it was time to take off with his mower, and Jake giggling went after him. I was yelling for them to come back - and they split up!! So I went after Jake who then jumped off his trike and started running - laughing - this was a game. I finally catch him as he darted up and down aisles - he is a quick little guy. I put him in the cart and strapped him in - I told him I was VERY angry - he should never run from Mommy. Now WHERE is Tyler???? He is no where in site. I rush quickly pushing one of those huge carts with the seats behind the cart so that Jake and Tyler could sit there - and of course you know that neither was since they took off.... People thought I was a maniac. Finally I gave up and made a beeline for the front desk. I ran frantically past a co-worker who stopped to talk to me and I breathlessly said - can't talk missing a kid - need to do a code Adam! So up to the front. I tell them I am missing my 6 year old. So they ask me if they announce his name over the speaker would he know to come up front. HMMMM, no - he has Down Syndrome and he probably would not even pay attention to the annoucement. So they send out a code Adam and all associates start looking for him Pretty soon the call comes - he is in crafts - when they first approached him - he started running - so they had to catch him and then up to the front they came. There he was still pushing the lawnmower and all smiles!!! "Hi Mommy" So same thing I had to tell him how upset I was with him and he was naughtly that he can't run away from Mommy.
So all in all we make it home it is almost 9 now!!!! Wow! Owen sits down to do his homework, the little two are off to bed. Then oh my gosh we have to make muffins! So we quickly whip up our muffins - see baking from a box works well! Owen started making them while I was getting the little ones ready for bed. He did his best just a little mixed up. He poured the crumb topping into the bowl, added the egg, added 1 1/4 cups of oil (not 1/4). So we had to start over, no biggie I was very proud of him for reading the directions and trying. I had to explain how to read the measuring cup because he was confused - he had filled it to the 1/4 level so I showed him how he had to look where the it was on the cup - he was totally right it only said 1/4 but because it was above the 1 it really meant it was 1 1/4. So okay he understood - could he try again and I just watch he wanted to do it all. Sure thing - so I supervised and he did awesome. So hope you all enjoy Owen's muffins tomorrow!!!!
Then off to a quick shower because it was bandage changing night as well. Now off to bed - yeah!!!!
Tomorrow Jake, Tyler and I will be going to movie night as well. Jake's school is having a movie night with Dora and the Wiggles so we will go to that while Owen is off having his fun night. Should be a fun night.
Have a good night - I think I will pass out from exhaustion in about 2 seconds or be up all night replaying Walmart in my head!!!
Owen is planning on returning to school tomorrow, he is still a little sore tonight but it is a tolerable soreness and by tomorrow there should be very little if any pain.
I spoke with the home care supply company today. They are sending me out the supplies to do the blood draw on monday morning to test for Owen being able to start on tuesday. I will call them monday morning to have them on the phone with me as I do the draw as I have never done this before. I didn't think I needed someone here or a pre-training day. I figure I have seen it done enough times and already take care of his lines with flushes so it is just a matter of drawing the blood out now. Piece of Cake right!!! This will just make it easier. Owen can go to school on time, I don't have to supervise the nurse at Auburn to make sure she does it properly and cleanes his lines properly afterwards.
Have a great night!
It wasn't long - at 11:30 they called me in. He was still sound asleep and still had to lie flat anyways for another 15 minutes due to the spinal tap anyways. He also received 4 regular immunization shots today that he was due for. He started waking up around noon and was very sore. He was crying - his legs really hurt - that is where the 4 shots went. So the RN and I had him stretch his legs to kind of move the muscles in his legs hoping that would help him out. NO he started crying more - because he moved and his back then hurt. This continued for another 20 minutes or so when the RN said it was up to us if we wanted to stay until he felt better or go home. Owen immediately said he just wanted to go home and lay down. So he was put in a wheelchair and escorted to the front where I picked him up in the car. He cried on and off the whole way home. I felt so bad - he has never really complained this much after getting these done. Well last time he was on steroids so the hunger pains took over the procedure pain then!
We were home before 2 and Owen was sound asleep by 2:30! I have been having to help him to the bathroom, as his back bothers him when he walks. He slept a good couple hours but is still very grumpy and sore. I feel bad for him but I finally had to stop his grumpiness and being miserable to everyone else. He was grunting and whining at me all day. So once he asked we for something to eat and I said I was cooking dinner. He started to whine that he couldn't wait for dinner and wanted something NOW! So I bit my tongue and asked what. He asked for toast with jelly. Easy enough - I made it brought it to him and set it on the coffee table. He immediately was shreaking and crying that he couldn't reach it. I stopped looked at him and said - Owen I'm sorry you are hurting but I am a person too and if you need something you need to ask me. He just started crying harder. I bit my lip - tuned and said I would be back to help him when he asked me nicely. AHHH I know he is hurting and I hate seeing him hurt but in the same breathe I can't let him loose all sense of how to behave!!! Right??? He had a lot done today and I don't know how much it hurts, and I am sure it does but that is not an excuse to lash at me or his brothers. Sure enough he called me back and asked nicely for me to pass his toast to him and apoligized.
He has been a little bit better the last hour, actually laughing a bit and we are talking about things so hopefully things are settling. He has laid down all day which is good. He usually gets spinal headaches after the spinal taps, but so far none. I have been giving him Mt. Dew all day - caffeine and laying down are the best preventions.
Got the results of his bloodwork:
ANC is 850 ( we need it to hold steady, he needs 750 to start chemo next week)
Hemoglobin is 7.7 - they usually transfuse at 8 but he looks good and his bone marrow showed lots of new growth coming. (yes the inital look at the Bone Marrow looks good, more detailed results will take 3-5 days)
Platelettes = 88
WBC - 1.7
I will be doing the blood draw on monday morning to take to the lab to test and make sure we are a go for next week. Hopefully Owen holds and we don't get off schedule. Hoping the new growth will help keep his counts where they should be.
Have a great night!
Owen made me a beautiful DVD of himself reading a story about mom's (they made them at school). I had a decorated can with a flower with Ty's picture on it and a bunch of lilacs. Just beautiful from my boys!!!
Then we played outside for awhile. Jake, Tyler and I then did some running to Dickmans- Grandma Lea's and Grandma Pats. Then to Wegmans for some a few things. Owen was in a tizzy when I returned because I hadn't asked him to go. It was mothers day and I had left him behind! So I said we can go do something special now me and you. Chris was going up to his Dad's and stepmom's so he took the little ones. Owen and I went to Arnold Palmers. We played some minature golf, then a few video games, and then we hit a big bucket of balls. We tried our hardest to hit the car out in the field but never quite did - was either short or long. It is HARD to use one of their boxes with the tee's - it is alot higher than I am use to. Next time - we'll think to bring our own clubs! Owen was hitting pretty good. He was hitting them better when I didn't make him stand correctly. He kind of had the Happy Gilmore thing going. While we were hitting the balls - we heard this noise of guns popping. We looked around and sure enough there is a paint ball arena there! I never knew. So we went over to check out the scoop on this. Kids should be ten - sorry Owen - HOWEVER if an adult is with them and signs the waiver they can go. Owen looked at me all smiles and bright eyed -"please". I think this is a job for "Uncle Steve"!!!!! I did tell him if all else failed perhaps I would take him sometime. I would want to have a 'quiet time' so he doesn't get hurt. Although the speed of the paint can be changed - I don't want him to get hurt so will have to debate this out.
Pick up Pizza for dinner and mothers day is complete!
Today was a good day. Owen did go to the nurses office at the end of the day - he had a headache but other than that he had a good day. I brought him to school. I had Tyler's CSE meeting to go over our goals and progress for Tyler. He will continue to stay in the Boces special Ed program. The program is however moving to Port Byron school district ( but - YEAH - the same teachers and aides will go), it is just a re-location. Tyler has made alot of progress with this Boces program, and I am thrilled with it.
Grandma Bonnie came out for dinner tonight. Now we are all ready to fall asleep!
Tomorrow will be a long day - but mostly just a sit around day. Owen has to go to 5C for his doctor checkup and blood counts. His spinal tap and Bone marrow are scheduled for 11:00. Although the actual procedure does not take long the prep, then recovery room are the boring sit around times. Probably will not know anything tomorrow. The Bone marrow test takes 3-5 days. They will do quick looks at bone his spinal fluid and bone marrow, but it is the detailed tests that will tell us the most - and hopefully it will be that the Leukemia is staying far far away!
Many people say to me that they don't know how I do it. I am a mom - and any mother just does things with out asking why or thinking about how. There is not question about how to do things - whether its remote control or just an instinct that keeps you going. Our children our the most important thing in life and an inner desire just takes over to give them what they need.
Although myself and the many other mothers of the world who have to find an even bigger strength to help our children who are sick it is just something we do. None of us asked or want to have to be going through this with our families but the love of our children and strength that THEY give back to us makes it all happen.
I received a beautiful Geranium plant yesterday from my wonderful friend Lori in Florida for mothers day. Thankyou Lori!!!!! Lori is celebrating her very FIRST mothers day this year. I a very big moment in all mothers lives. Happy mothers day Lori - enjoy it all! And yes Dave you must let Lori do whatever SHE wants today. LOL
So happy mothers day to you all!!!!!
Owen continues to feel fine. He didn't have any luck Turkey hunting. They saw some hens but no Tom's. Too bad, but he had fun anyways. We had Papa W. and Grandma Lee over for dinner last night. We had a delicious dinner and lots of fun.
Owen's birthday is next monday so the plans are in the works for his kid party and family party next weekend. Hopefully he will continue to feel great this week and be able to celebrate before returning to inpatient the week after.
Enjoy your day - and all you Dad's out there give the mom's a break and let them enjoy the day!!!
Owen is Turkey hunting with Uncle Steve this morning. See if the mighty hunter gets anything. Problem is Owen usually can't stay quiet long enough for a turkey to come near!
Hopefully a quiet day!
Our pool repair was a success! Looks great. Wow I am getting scared - two for two.
Owen went to school today! Yeah, of course it was only a half a day of school today, but he was there and had a good time. They had saved him his butterfly so that he could let it go. It even gave him a 'kiss' on the forward as it flew off and 'bonked' him.
Tonight we went to Jakes school for Music night. Owen, Tyler and Jake all went. They made tamborines out of paper plates folded over and filled with corn. Then off to the cafeteria to sing songs and play their instruments with a couple of music men. I think Owen enjoyed it the most! Especially the dancing song - you had to get faster and faster. Tyler had his hand up everytime to volunteer when they were singing Ol McDonald. He was so proud when they called on him to pick an animal. He picked a Pig. And Jake grinned ear to ear the whole time. It was a really fun night.
Back home and we are wrapping up and getting our PJ's on. Owen has to have his bandage changed and tubes flushed tonight. Then off to bed and a whole day of school tomorrow. He is feeling good and looking good.
Today is mine and Chris' 10 year Anniversary! Wow I can't believe it! Here's to another 10 - yeah I'm a glutton for punishment. LOL Just kidding honey when you read this - I love you!
Owen got sick during the night. He woke up at 2am and made a dash for the bathroom. He took a shower afterwards as it was all over him - poor thing. He felt better afterwards. We let him sleep this morning to see how he felt when he woke up. He was coughing alot. That little tickle cough - but mom said he just kept coughing and coughing. I was going to call the doc, but then our NP Zarina called us. I told her about it - just wanted to make sure he couldn't have a allergic reaction a day late. The cough was like identical to what he has when he is having a reaction. But she but our concerns to rest there. He seems much better this afternoon.
Hemoglobin 10.3 (11.5-15.5)
Platelet 239 (150-400)
ANC 1650 ( below 500 is immune depressed)
Good day... long day. We arrived at the hospital at 9 am and left at 2pm. Owen got weighed in and then had our checkup with our NP Zarina. All seems fine. He does have hives all over his legs which I was told when we were inpatient it was from the Methotrexate chemo he received. I was glad to see another caringbridge child has this same reaction! Makes you feel better to know you are not alone... They took his blood to check his counts before they could start the chemo. Owen has gotten way to smart - we were in the TV lounge area where they do the outpatient chemo and he wanted to go to the playroom. I told him no - he had to stay in this room as they would need to watch him. "Mom - they just took my blood, they have to wait for the counts to come back and I have to get the fluids in me first so it will be awhile, I'll come back when its time" The nurse looks at me and shrugs - he's right thats exactly it - he is free to go...
Once his counts came back and were good, they started all the premeds (he has to have 3) to help prevent a reaction to the chemo. Since he had the reaction to the Etoposide there was a 50/50 chance that he would have a reaction to the Etophous, so they pre-med him just in case. Finally a little after 11 the chemo was hung. NO REACTION - YEAH!!! They have to run a few flushes, then up went the 2nd chemo - finished at 1 and then another 1 hour flush.
Owen looked good and had lots of color when we arrived, but he seemed to pale as the day went on. His Hemoglobin was good though - they transfuse at 8 so he should be good. We just need to keep an eye on him. If he seems to get paler or very tired all the time before our appt. next tuesday they want to re-check his counts. They don't think the chemo could have dropped him that quickly in the 5 hours we were there.
Next Tuesday will be another long day. We have to be there at 9 for check up and blood counts. Then a spinal tap at 11 with 3 chemo injections on the spine, and a bone marrow aspiration.
Owen went back to work with me for 1 1/2 hours. I put him to work using the electronic hole punch, for our new systems user manual documentation. I think I need to bring him in to do the whole thing - he loves it! We then headed to the fish store to get crickets for his lizard and a new shark as ours had died. I went up to get the cricket cage and found Spidey (the lizard ) had died! He hasn't been acting well the last several days. He didn't even mind when I picked him up, he wouldn't run and he was like half green half brown. I had to go break the news to Owen. He started sobbing! We gave Spidey a funeral and buried him out around the pool where I am (someday) putting our old dogs - I have a 'beloved pet' stone I bought to put over the top. Then came the questions... why couldn't we take spidey to the doctor, why didn't we give him medicine, I am sick - will I die? Oh GULP that was the one I knew was coming but didn't want to hear. I tried to explain that spidey was too small of a creature for doctors to fix. When they got sick there just wasn't anything to do. But bigger animals and people are able to go to the doctors for help. Just like Champ (dog) getting sick and the vet gave up medicine and he is fine now. I think it went okay. When Daddy got home - Owen told him & asked if he could get a new spidey. So off they went and all is well again. So that is good he is focused on the new life and not the death!!!!!
Well do i dare breathe the words that Owen should return to school tomorrow?! He was feeling really good today and his counts are great for returning... so we are going to try it. Owen is anxious to go as his catepillar has evolved into a beautiful butterfly. He missed the whole process - last he saw him it was a catepillar but at least he will see the end result.
Have a great night!
Then hopefully we can think about getting him back to school. We'll have to play things a day at a time. Hopefully things have calmed down with illnesses around and Owen won't be exposed to things, but as long as he is not feeling 100 don't want to run him down, and bring on anything.
Cannon Pools gave us the name of a pool repair contractor they use. He called today and will be out on Wednesday. He has done this sort of repair before. We have to drain the pool another 3 or 4 inches. He will then heat up the liner to stretch it enough to pull it back up and into the clip. He says he will also put something ( forgot the name he used 'bead' stuff) to make sure this doesn't happen again. He said it is just a fine line in heating it up enough to stretch the liner without ripping it with the weight of the water. Cannon Pools says he is good though so I am willing to go with their recommendation. I bet our guy never did that knowing this would happen. We had a real 'nice' relationship by the time he finished our pool. I am a very laid back person but this man found the ugly side of me!! It was a total nightmare, I had to call the BBB, I called channel 9 new 'Your Stories' who also contacted him to interview him. We were not the only people this guy put the screws to with installation. Another customer I found in my searches - he took over 2 years to get their pool in and they had paid him 100 p front! Surprise Surprise his phone was disconnected when I tried to call it today. And just for the record his name was Mike Mueller from Central Square - so watch out and NEVER hire him!!!!!
Ok I feel better :-)
Have a great night and here's hoping for a quiet day tomorrow!
Our bad luck continues - we opened the pool today. What do we see - the liner had pulled out from the top snap. I think it just needs to be re-attached it doesn't seem to be ripped - but how do you do that? Will the pool have to be drained? Then the big question - will the guy who put in our pool do it???? I haven't had to talk to A-hole (my nickname for the jerk who took 16 months to put our pool in) in a few years. Considering our nightmare to get our pool in I don't have alot of faith in him coming back out. I will call him tomorrow and a 'real' pool place. Hopefully this is not a big deal!!!
Tyler is on an antibiotic now. The docs wanted to dry and dry him up - as he has a hard time shaking these colds once he gets them. So thank goodness for that.
Heres to hoping Owen doesn't get any worse & NO FEVERS!! Have a good night!
Owen started out rough. He stumbled out of bed wanting to go with me at 6:30 to set up. He immediately got sick. I tried to get him to stay home and Daddy could bring him later. He wanted to go though - he would lay down at grandmas and if he didn't feel better would go home. He immediately crashed in the car, and then went right in Grandma's house and crashed until 9:30. He came out and lasted all of 15 minutes. It was so damp. No one was interested in buying lemonade or soda - should have had hot chocolate and coffee! So we would watch his table of stuff to sell and he went back in and played games on the computer and watched TV. Later he bought a game at the sale and then him and Sam played that. So yeah - he spent his earnings as fast as he made them.
We cleaned up and headed home. We had a craft day here at home. Lots of painting and well yeah lots of messes but it was fun!!!! Owen was getting very quiet. He looked tired and his voice is as hoarse as can be. I think he is getting Tylers cold - yes Ty is sick - although this is the cold the Croup turned into but I imagine it will hang on Tyler for a while his cold always do. I hope Owens doesn't turn into anything more. He says he feels fine, but sounds bad. He did take a short nap on the couch, but then him and Jake had a boxing contest. Owen had his fighting gear on from Karate and Jake some spiderman boxing gloves. They were too funny. I had to be the annoucer and ding the bell. Jake would fall and I would start counting - he would shake his head and get up slow - then boom was up. they were very convincing fighters. I had to always fix Jakes boo-boos at the end of the rounds so he could fight more.
Now everyone is settle down and ready to doze off. So am I - it was a long day. I couldn't sleep very well last night. For some reason my first night home from the hospital is always a restless night. I think it is becoming use to the quiet again instead of the dinging of IV's and people moving about all night.
Have a great night!
We had an eventful ride home. Owen started feeling sick coming home. Sometimes he does riding in the car for a long time and I didn't have his motion sickness bracelets with us. We were almost home and he got sick! He threw up several times. (good thing I haven't had my disaster of a car detailed yet) I finally found a bag in the car and gave that to him. He got in the house and laid down - definately not feeling good.
Jake was thrilled to have mommy home and Ty arrived home shortly on the bus and was waving like crazy when he saw it was me coming out the door to get him. How heart warming to have them so excited to see me and such big hugs!
Owen continued to lay on the couch. He was feeling better but not great. He had perked up and was talking again. I think between the ride, the chemo and he was reading in the car all ganged up on him. Tyler, Jake and I were outside playing and Owen came out around 5 and said he was feeling fine again and could he go over to Seans for his birthday party. Owen is really good about knowing what he is up to with feeling ill - it was him who told me around 3 that he didn't want to go to the party. So I took him over and said I would be back to get him around 8:30. Sharon called around 7:30 and said Owen had kind of slowed down. He said he was feeling fine but he was mostly sitting and watching the kids play. Owen does get tired faster - expecially since they were doing alot of outdoor running play. So I said I would come and get him shortly. I showed up at 8:00, and Owen burst into tears. He didn't want to go - he was having fun and they were going to have a bonfire and play poker and he wanted to stay!!! I knew it was time though - he looked tired, and his voice was hoarse. There are plenty more days to have fun coming - and we don't want to over due it. He came home very sad, but he does admit he is tired. I knew he would try his best to keep up with everyone so this was best.
Besides tomorrow is the big Kearney Ave Garage Sale and Owen wants to make lots of money selling his stuff and drinks so he needs to rest up to open his business tomorrow!
Have a great night and thankyou thankyou for all your constant support for our family.
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His last level was .23 ARGHHHH - we need .2 to go home. After the 3rd draw - they frequency of the draw goes to 12-24 hours, so technically they wouldn't draw again until 1:30am HOWEVER they did just take another check at 8pm. They checked with the doctor and he okayed it. It will be awhile for the result but we may possibly be driving home tonight to sleep in our own beds! I just got back from a little walk up to CVS. Owen was craving popcorn. I checked with one of the nurses to make sure I was 'safe' walking up to the hill while it was starting to get dark, and he said no problem. I remember back when Ty was in once at crouse in the summer I walked over to market street at 7pm and all the weirdos were out - the hospital staff couldn't believe I went over there - they said you shouldn't go there after 6! Course that was summer so school was out and was several years ago so things have changed I guess. I am back safely with no issues and Owen is enjoying his popcorn.
Keep your fingers crossed we will be home tonight(may be late - but home).
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Things are going great. Owen woke up around 9:30 and relaxed to wake up a bit and then was off to school. He has been hanging in the Day room the rest of the time playing an "I Spy" computer came. He has everyone hooked on it, they all walk by and try to find something. Although the whole floor was stuck finding the knife on this one screen. One of the student nurses and him finally found it and I think the whole floor came running to see where!
His levels so far were 1.4 yesterday, .66 at 6am and then they just look another level at 1:30. If this level is not below the .2 I believe we have to stay until tomorrow as the next draw time is tomorrow am i think but will find out all the details when these results come back.
"Jake" the working dog (german sheppared / sheltie mix) came for a visit on the floor. He is just as laid back as a dog can come. He just plopped down on the floor and didn't move again until it was time to go. He did lift his head occasionally. Wow big difference for us - we are use to our 'wild child' Bo who NEVER lays still!
I will catch up later when I find out all the information!
It was PROP night - a parental support group night so Canoli's and cookies and lots of game playing. Owen had fun and made some new friends. We met another family who has been here 3 weeks - they are getting prepped for a bone marrow transplant so I had lots of info for them. They were amazed with watching Owen all day how comfortable he was just whizzing around and talking with anyone on the floor. I said he has been here for too many years now and knows everyone and if he doesn't know you - he will because he figures he will be seeing alot of you for the next couple of years! He's a social bug.
Have a good night!!!
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It was a nice and quiet night - always like those. Owen had a good time playing with the nurses most of the day yesterday. He took a break to eat but then a medical student came down to see if he wanted to play - so sure - carried his dinner with him and they wer off again. He did start getting a belly ache so came back in a little while to lay down for a bit. We watched our Disney Planning DVD - we are hoping to have a family vacation next fall to disney with our family and my sister-in-laws. So starting to check things out. About 8:00 in walked his 'wife' Brooke! Yeah - she crawled right in bed with him to watch the Disney DVD. Hmmm his stomach is felling much better now!
Owen and I then went down to the day room to play trouble. He kicked my butt twice! I went and got the stuff to make my bed up and Owen hung out at the nurses station with Brooke. After i was all set - I had him come down to bed so Brooke could work. He fell asleep in like 5 minutes! I couldn't believe it. It was a little after 10, but he is usually such a night owl in the hospital and with Brooke working the night shift he usually always stays up so they can hang out. I am glad though don't want him getting burnt out.
I see Mary Ellen on the floor today - so looks like a school day for Owen - YEAH!!! He is still sleeping now. It is a very disruptive sleep when on this chemo because he is getting so much pumped in that he has to go to the bathroom about every 1- 1 1/2 hours!
I'll update later!
Owen is feeling great and has been off and playing games with the nurses in training who are on the floor today. I have barely seen him since we got in our room at 10! Oh well I like it when he is enjoying himself!
Our room number is 7612 - phone# 464-3690
Glad I went to the hospital this morning. They brought us up to 2nd Memorial to have a nurse draw his line. She had saline to do the initial flush and draw the waste - but didn't bring a second saline to flush after the blood draw and no heparin to lock it after the saline flush and no new red cap for the end of his line. So I was there with supplies in tow. She wondered why I didn't just do the blood draw myself since I knew everything to tell her. I guess I don't know why.. never have had to do this on our previous leukemia road we were always in the hospital, and so far this trip we haven't run into this, all his visits are for more than a blood draw so far. Haven't had to just check counts to see if he was strong enough. So I guess I will need to ask about just doing the blood draw myself and just dropping it off at the lab.
Zarina our NP called this afternoon because they still had not heard from Auburn. Mom told her we were there at 9am so they shouldn't have called - and I had explained that they needed the results ASAP so University could plan for Owens chemo if his counts were good. So Zarina called and they gave her the results... so yep they had them just didn't send them on. So they called us with the thumbs up. I am glad - I don't like to get delayed. I guess this is why they say the protocol is 2-3 years due to delays!
Tyler has a very loose tooth - I hope I don't miss it coming out!!! This will be his second one. We never found the first one, it fell out in his sleep and we never found it - probably swallowed it! Tyler seems to be feeling good but I think his croup has turned into a cold now, which is what the doc said would probably happen. His nose is running, but he is happy as a lark.
We headed out for ice cream tonight. Tyler would go for ice cream everynight if I let him. I think we went 4-5 times a week last year but with the price of gas we may need to cut back! LOL So off to Pete's Treats. Lisa was working tonight so we got to visit for a while. Then Jake 'fell' off one of the parking cement blocks and got a boo-boo on his knee. He wanted to cry but we worked him through it - but he was 'sad' that he fell. He fell sound asleep on the way home and I just plopped him into bed.
I just finished packing so we are ready to role early. We will probably be in until Friday some time. Owen HAS to stay this time until he reaches the .2 level no matter how fast he drops (remember last time we could have left at the .4 level because he met all the criteria with how fast his levels decreased) - but since he did get the mouth sores later, they want to hand on to him a little bit longer. So Owen needs to do lots and lots of GOOD mouth swishes no matter how sore his mouth gets.
Off to bed - I will update once we are settled into our room tomorrow. Have a great night!
Owen went over to his friend Seans late this afternoon. He was on cloud nine that I let him go. It was a gorgeous day and they were going to be outside playing. Oh if only the weather will stay I will have so much less to worry about with germs. Jake and Tyler went 4-wheeling with Daddy for awhile, and then lots of just play play play outside. LOVING it!!! They were dirt and sand from head to toe by the time we finally came in and into the tubby.
Champ is back to normal - chasing butterflies in the lawn, racing around - never would know he was VERY sick a few days ago.
So Owen will go to the Auburn Hospital for a blood draw tomorrow at 9:00. I will meet Mom there after she drops Jake at preschool. The lab said a nurse would know how to draw off his hickman line but I want to be there to 'supervise' just in case!! So by later afternoon we should know if we will be able to start chemo on Tuesday morning. I hope we are back on schedule. Again he is acting and looking great but that didn't mean anything last time. Keep your fingers crossed!!!!!
Have a great night!
Mrs. Smith came over for reading and vocabulary today. He was looking tired by the end. We kind of rested for a bit after - but then everyone was getting wound up - I think they all were over tired so I loaded them up to go for ice cream - we were going to go later tonight but this way we could come home, stay home and get to bet early since they were not showing any signs of having quiet time now. Off to Pete's Treat... now we are home and hopefully my plan of early bed time will work!!!!
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Well things are slowly turning around here. Tyler is feeling MUCH better. His temp has finally disappeared and his nose looks good, he still has a cough but even that has improved. Champ - our dog - is feeling alot better. He still is pretty mopey but he is greeting me now with wags of the tag and is getting up and around more. He even asked to go back outside this morning after I brought him back in after potty's. He is timid of the puppy coming near him - as Bo likes to jump alot. But Bo must sense something isn't right as he is being quite gentle. Champ is eating again. So I think we are on the mend.
Owen thankfully has not gotten anything yet! I did let him 'escape' thursday night. At 8:00 he came begging out of his room that he needed to get OUT! He was going crazy and it wasn't fair that he was stuck in his room when Tyler was sick! So we called Papa Fred and he was able to go there. Papa didn't have to work the next day but had to run to Syracuse at 11 so he would bring Owen home then. So off he went happy as a lark. He convinced Papa to let him ride to Syracuse with him the next day so he didn't get home until the afternoon. So unfortunately he missed his phone call from his class - oh so sorry! Call again - he will love it!!!!
Jake feels left out - he keeps running and grabbing a bucket and saying he has to throw up! Lovely! I keep saying your fine and he keeps telling me he is sick too. What a trip he is.
We are going to go to the spelling bee today. It is at 11:15 at Weedsport. I will have Purell in hand and kind of check it out as we go. He is very excited, he is an awesome speller and I just want him to do the best he can!
I'll let you know later how we make out.
So this morning when Tyler got up mom called me and I made a doctor appointment. He seemed to be feeling better, but was still running a fever (101) and had a 'barky' cough. So off we go to the docs. He has Croup. I knew the barky cough was a sign off that but was wondering about the high fever and throwing up yesterday. Turns out they too are from croup. So there is nothing to do for him but rest, fluids and humidity. He is sleeping now and thats also a good thing. Like I said he at least is feeling alot better - we even played outside for awhile today.
So home with Tyler and off with Champ. He is running a fever of 103.9! No other real signs of anything so the vet had me take him for a walk to get a urine and stool sample if possible. Now for any of you who have never had to collect urine from a dog - you are blessed! LOL
We wandered around and soon enough he went - but as soon as I stuck the cup under him he freaked - jumped away and got all over me - oh what fun. The next time he went I was a little more subtle and was able to collect. No stool though. Back in and run some analysis. His white blood count was really high - so the doc thinks one of three possibilities - 1. Prostrate infection 2. kidney infection 3. bladder infection So he is on 2 antibiotics and I have to watch him the next 24 hours, and let them know in the morning if he is acting any better or they will perform more tests - probably a blood draw. I have to take his temp again later tonight to see if he has gone down any. And yes there is only ONE way to take a dogs temperature - fun fun fun!
So if anyone wants to come visit me I will be checking into to a physiciatric hospital soon! There or the Betty Ford clinic!
Then there is Owen - YEAH all is well! He is acting fine and feeling great. Hopefully his counts are rebounding galore. Still can't believe they were so low - this is the best he has looked and acted in a long time! He is coughing some and hopefully this will be nothing. He had Mrs. Vazquez come today for tutoring. Seemed to go well, just needs to practice those math facts. PRACTICE PRACTICE PRACTICE. Only way to get better. He has definately improved on them but needs to pick up his speed in knowing them. He is trying to convince me he needs to go somewhere to not be in the house with Tyler - but I think separating them will work fine for now. HOPEFULLY! He thought he should spend the night at Papa Freds and then go to work with him at the golf course tomorrow - hmmmm sounds like he is just trying to find a way OUT of the house!
Thanks for checking in and be thinking of me tonight as I am taking my dogs temperature!
Owen is doing great and hoping it stays that way. Mrs. Smith came to tutor today and he was full of it. They did get some work done but I think he gave her a run for it! Mrs. Vazquez comes tomorrow. He was fighting doing his math homework because he thought it was too hard. It was a Sundae ice cream menu and word problems. ie. 4 boys ate the Giant Sundae which is 12.95 Owen was adding the 12.95 - 4 times. Which is a valid way - so I showed him how to do 12.95 X 4 Oh the light comes on and he is thrilled - now it is easy! Super! Just have to work through his getting frustrated and get him to LISTEN and then he is fine. I guess thats with everything not just math!!
Owen is suppose to be in the weedsport spelling bee this Saturday. At first he wasn't going to go - worried about his looks, worried that he won't do well .... now he wants to. But then I have my other worry - do I let him go??? There will be lots of people there - and then sharing a microphone that all the other kids are using and who knows where his counts are right now! I don't know I have to think about it.
Well hopefully the night won't be too bad and Ty starts feeling better - poor thing. Have a good night and thanks for always checking in!!!
I called the hospital today to make sure they could draw blood from his hickman line - he sure doesn't want to be poked if he doesn't have to. I figured I could show them what to do but I didn't know how accepted that would be. But now I don't have to worry about it. So next monday he can have his levels checked and hopefully we will be back on schedule for tuesday.
I have to tell you about Ty at dinner tonight he was so cute! We were all eating (us chicken - Ty fish - at least he is off the pancakes for dinner!) He cleared his plate and boom up went his hand. I said "What Ty". He said "more fishy". Ok I give him more. He finishes and boom up goes the hand. I looked at him for a minute - he just sat there arm in the air. Finally I said "What Ty", again he asks "more fishy". He did it one more time after that. I started laughing. I said "good arm raising Tyler". He just beamed and said thankyou. So I guess he is learning the ropes of school, and how he has to wait to be called on. It was great!
The mass clean out is on. I am cleaning out the basement - old toys, household, and nursery stuff. Having the big garage sale at Grandma T's house on the 6th. I have tried to have one here the last few years - but we are just too country I guess - don't get much business. So we are in the city this time - and what doesn't sell - does not come back!!!
Have a great night & we hope to keep them quiet here!
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All settled in and prep of IV fluids is almost done. Owen is in his glory - on of his playstation buddies came in 15 inutes after us. So him and Nick couldn't wait to get the games going. I do NOT even exist - except to fetch a drink or food! Can see some battles coming up for working on homework or breaking from the games! Oh well at least he enjoys his stays when he has a buddy to hang with.
Tyler's rash was almost gone this morning. So don't know what that was - maybe it was just indents from laying or sitting on something. Just weird it is taking so long to disappear - it is like it bruised him.
We are in room 7612 and phone is 464-3691
We played JAWS inside for a while after. Owen is Jaws and me, Tyler, Jake, and some big superhero stuffed dolls make up the crew looking for him. Tyler LOVES this. Course he loves it when Owen pulls him into the water to eat him. He holds out his hand to be screaming help (between giggles) and I have to reach in and pull him to safety.
So tomorrow we will head up around 8:30. They are already for us and have a room ready - pending no admissions tonight. But even so they can get him started in the day room. We know now they have several hours of prepping him with IV fluids before the chemo even starts.
Now I do have a question for everyone. I noticed these weird marks on Tyler when getting him ready for bed. He has a bunch of perfectly circular marks on his lower back. They are brown in color, with a little bit of texture to them when rubbing your hand over them. When I first saw them I thought he must have been laying on something and it left this indent into his skin. Well it is not disappearing. Chris still thinks it is nothing - but with the luck of our family I start panicing. I looked online but can not find any pics like it. I will wait till morning to see how it looks, otherwise I will be sending him to the docs. I did upload a picture of it, but it is hard to see but just in case anyone has ever seen this.
Thanks! Goodnight and I'll type to you all tomorrow once we are 'settled in'!
Chris and I are going to treat ourselves to a night out. We are going to dinner with my Dad, Leanne, her brother Ed and his wife Carol. It will feel good to get out.
Other than that things are good... well if you can count Owen hanging on me right now crying because he wants me to stay home... even a break away will make me feel torn - should I go or stay.... He will be fine as soon as we walk out the door, he'll have lots of fun with Kim babysitting.
So heres to another quiet night and then a quiet day tomorrow before returning to the hospital on Monday.
Goodnight and thanks for checking!!!
He had felt great all day at home. Jake, Tyler and him played outside with the match box and roads drawn all over the driveway for hours! He is getting a little warm right now (100.3), but he feels fine - so for now we are going with the docs advice - he looks and acts fine - he is fine, just working through this virus thing! It is a nervous feeling but oh how great it feels to be home - after thinking we would be there all weekend and his schedule getting delayed... on and on. Breathe a little and relax, everything is fine.... heres to a quiet night and nice weekend!
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We just got the shock of a lifetime - we are being released! Owen ran a fever until early this morning. He last got Tylenol around 2:30 - which was a story in itself. The orders were written for liquid - they were suppose to changed to tablet but when Detria brought in the tylenol it was the cherry liquid (not even grape which Owen will do if necessary ). So he tried it anyways - and nope - right back up. We were scrambling for a bin as we didn't have one - but thankfully the family next to us rushed their bin to us! So then Owen got the pills - Detria was going to make sure Owen's orders gets changed - he is sooo bad about liquid meds as I am sure all of you remember from before!!!
So anyways back to this morning. Doctor came in around 10:30 and said Owens fever broke - the flu wash was clear - the cultures were negative - so maybe stay one more day... okay that sounded good. Then he changed his mind - nope - Owen was doing fine - as sick as he was yesterday if he had an infection it should have grown quickly in the cultures. So he will send us home on a 24 hour antibioitc and I have to call late morning and verify that nothing did grow in the next 24 hours (as it can take up to 48 hours). So as long as Owen has no more issues this weekend we ARE still on schedule for Mondays chemo. His fever did not drop his counts so he is at a level ok to start. So home for a couple days - then back for our 3-4 day stay.
I am so confused on what to do. I hate to put Owen in a glass bubble, but everytime I let him live 'normal' we end up in the hospital. Hopefully with the nicer weather we can just spend more time outside and have friends over but limit his exposure to anywhere else. I am just getting a little nervous over all his reactions to meds this time and the infections/ illness he keeps running into. Whether any of it has to do with him doing and going places who knows!!! ANY THOUGHTS???
So we should be out of here shortly, have to get some prescriptions and then home. I will update later - and hopefully Owen will stay on the healthy path here - and we won't be rushing back!
Everything STARTED normal. I got up and ready for work and was on my way - all of about 5 minutes on my way. My cell phone rings - its Mom, Owen was upstairs throwing up and running a fever 102.4. So turn around and head home. Well on the way back I have to go through the accident on 34 and 34b - a tractor trailer and an SUV, trust me the SUV lost! Not sure what happened, looked like the driver was still in the SUV and they were talking to them so not sure if they were trapped or not. Trooper was just arriving and the sirens were going off. Meanwhile back home Mom is wondering WHAT could be taking me so long as I could not have been that far... then hears the sirens! She starts panicing that something happened to me. No I am fine.
Owen is now 102.7, I call the on-call answering service, but they say the office opens at 8 so just to wait till then and call. So at 8 his fever is now 104!!! They are going to talk to the doctor and call me back. The phone call comes to pack a bag and come in - he is probably neutropenic - meaning his counts have bottomed out. So off we go. They rush us right in - get his vitals - then off to the treatment room to get cultures from both of his hickman lines AND a peripheral (needle in the arm) blood draw. Owen was very nervous over this since last time they did quite a number on him trying to get a needle inserted, but it went smoothly. They got him hooked to IV and tylenol in him. His heart rate was REAL high at this point it is 150 (normal is 90 with a high of 110). His fever was still high at 104. They got us settled down in the lounge chair area and we throw a movie in. They started him on two different antibiotics. One was Vancomycin which we have to run slower (1 1/2 hours) vs. the normal 1 hour due to him have reactions. Well with about 25 minutes left he started itching all over and sure enough was breaking out in hives. They slowed it down again - so he will now need it over 2 hours the next time, and gave him benadryl. Owen temp had finally gone down to 101. Not for long though - at 2:30 he was back up to 102.5 they gave him more tylenol and then we were able to head up to 7H for admittance, our room was ready. Owen fell fast asleep, and I went to the car for our baggage. So by 3:30 we were all settled in.
It appears it will be some infection, due to his counts being ok. His WBC was 1.6 which is below normal (4.5) but he is not neutropenic so he does have an immune system, and his hemoglobin (8.3) and platelette (102) level are ok, they will transfuse blood tonight just because it is going down anyways(transfusions done at 8) -so the thought of it just being low counts is gone... He is coughing pretty good today and he is sounding 'harsh' in his lower lungs today. They are going to also do another influenza culture - just to make sure it is not the flu returning. Oh please - I hope not - not that I 'wish' for it to be anything but it was so scary last time! It can take 24-48 hours to detect anything.
With that said Monday's chemo will be delayed. They can not start him on this type of chemo with fever and/or low counts. Even though his counts are ok right now, the fever will bring them down quickly.
Owen woke up around 5:30 and is watching TV resting. He doesn't feel great... but he is talking! He again is burning up with fever 102.9
Not sure what tonight will bring...hopefully Owen will do allright. Good night and say a prayer for us - looks like we are on a rough ride once again!!
9:00 - on our way to the hospital. They said to bring a bag - he is probably neutropenic ( his counts have bottomed out). I will update later.
Owen is feeling fine, and has been playing and having fun all night. He is more 'sensitive' and is crying at the drop of a hat over things tonight. This can be a sign of him not feeling well or over tired. I hope it is the later!!!
Have a nice night!!
Around 7 tonight he started to not feel well. His temp was bobbing up and down ( 99.9 - 100.4 )! Now 100.4 is the magic number to call on. I decided to hold off and get Owen in the shower and maybe cool him down and he might feel better. So far so good, he is perkier and is now running a temp of 99.4 so I am holding my breath that this was nothing and there will be no middle of the night run to the hospital!
So give us all a prayer that we will stay nice and cozy in our beds! I'll let you know if all stays calm.
Goodnight!!!
He liked riding the bus again and seeing his friends. He even got to have 'specials' today because on certain days they are early in the day. He did take a big nap when he got home - big first day of school wiped him out! Other than that nothing much to report and I like to say that!
Thanks for checking - type to you later!
Lets see where to start. Owen got up at 2am to let me know the Easter Bunny had not been here yet. Then he woke me at 3am to tell me Daddy was asleep on the couch so THAT was why the Easter Bunny had not come yet. So I had to go down and wake Daddy up to come to bed. Then at 4am he woke me up - he STILL had not come! Owen- have you slept at all yet!!! He said he kept dozing off but couldn't sleep. So I went and layed with him for a bit. No good - he woke me at 5am - STILL no Easter Bunny! I said he isn't going to come until he knows you are asleep. So I gave Owen a benadryl to calm his stomach and help him sleep. Ahh finally he falls asleep. I get up at 6:30 and YEAH the Easter Bunny has finally come :-)
Of course Owen now sleeps till 9:30. So I am ready for bed now!
It was a great morning though. The boys were thrilled with the Easter Egg trail from their rooms to their Baskets of treats, and then a note from the Bunny telling them to keep looking as there was another BIG surprise. Owen couldn't believe he didn't give them a better clue as to where! But he walked around looking - and sure enough by the washer and dryer was a Basketball stand and ball! Wow how cool! So that kept Daddy busy for awhile - especially when one of the big rubber washers was missing! He mangaged to 'make' a substiture from a bungy cord and the hoop was up and ready to go!
All of the Grandparents stopped by for a visit and some more treats and money to burn holes in their pockets. Just a quiet dinner with our family and Grandma Pat. Then back outside for some more basketball playing and then dessert, tubbies and now bed - Yeah!
Now tomorrow back to normal for everyone! Yes everyone. Owen will be going to school and he is even planning on riding the bus there, but Grandma Pat will pick him up to come home - the bus ride home is an hour and 20 minutes so we don't want him on that long. He has to leave early in order for Grandma to be home in time for Tyler but thats okay he only misses 'specials'. Although that is the BEST part of the day for Owen!
Hope everyone had a nice holiday! Thankyou for checking in on us & I'll let you know how 'normalcy' treats us tomorrow.
We arrived just after one and the show started at two. It was a packed house. Our seats were great - row 2 of the balcony so we could see everything going on! The show was really awesome. Owen loved it! He is already looking forward to going to another - Beauty and the Beast is in October so maybe...
The costumes were out of this world, and the dancing and singing too. Scar (the bad lion) was the best! He truly seemed evil! It was a long show 3hours but not a minute was wasted.
So now we are home for a quiet night and in hopes of the Easter Bunny coming!
Have a good night and have a very Happy Easter!!!!
We had dinner and are now settling down to watch 'The Cat in the Hat' - one of Tylers favorites! Tyler is starting to get a runny nose and all stuffed up. Great just in time to return to school. Hopefully he will get over this quickly.
Owen does not have any doctor appointments next week - a whole week off, and then back to inpatient on the 24th. So looks like a full week of school and normalcy. Yeah!
Tomorrow Owen, Grandma Pat, and I are off to Bugaboo Creek for lunch (Owens favorite Rochester restaurant), and then to see the play Lion King. This will be Owens first broadway play, but I think he will like this one I have heard nothing but great things about it.
Good night and thanks for thinking of us!
We had a fun night. We went to Holy Thursday at Sacred Heart. Owen, Tyler and Jake all went up to have their foot washed! They were soooo adorable. Owen and Tyler hopped right up in the chairs and ready to go. Jake needed me to go with him and then I had to sit on the altar while they did his and hold his hand. But he loved it just the same. Tyler signed Thankyou to Father when he was done - it was just so cute.
I got alot of compliments after church on how precious it was to see the three of them up there and how WELL behaved my kids were. I on the other hand was cringing all sermon wondering if people were staring at me. They were pretty good ( now I am referring to Jake and Ty as Owen is old enough to know how to behave). But Jake was asking a million questions and then singing his ABC's. Tyler was flirting with all the people around us and asking 'Whats that' to everything in the church. Then he kept asking to go night night. But I have to say they were good.
Owen went with Aunt Anna after to go church hopping and then to spend the night. So he is thrilled another special night with Aunt Anna! Tyler, Jake and I went out for ice cream at Koscas for being good. They were so pleased with themselves when I told them we were getting a treat for being good boys.
Well off to bed - have a great night!
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Just wanted to update that Baby Donovans biopsy showed it was either a form of mono or leukemia, but most likely leukemia. So they are glad they removed the testicle and don't have to worry. I am very confused and I even emailed Melissa to voice my concerns and with questions. We were told that removal of the testicle and no further treatment was a VERY HIGH risk of relapse, that the testicle had to be removed or radiated and FURTHER treatment WAS NECESSARY. It sounds like the doctors in NC are not planning any further treatment. So hopefully she will pose some questions there and let me know.
I am off to a golf meeting. I am hoping to have a 'sanity' night once a week or at least as much as I can! I need it!
Other than that just life as normal as can be!
I do want to ask you all to say a prayer for another family I follow. He is a 16 month old child who was diagnosed with ALL at the age of 6 weeks! He was able to get in remission for 7 months but then relapsed and a cord transplant was done. Now at 16 months they are fearing a testicle relapse! He is having a biopsy done tomorrow. This poor family has spent the majority of his life in a hospital. He is the sweetest thing! Please check his site at http://www2.caringbridge.org/in/babydonovan/
It is so sad that any of our children have to fight so hard to be kids. So please give your kids a HUGE hug and appreciate everything you have with them.
Have a good night and I'll check in tomorrow!
True to his word Owen is doing his swishes very well again. He doesn't want to have to stay longer in the hospital next time.
Owen did manage to practice some spelling words today. We are still hoping to participate in the Weedsport Spelling Bee. It is April 29th, so the weekend following his next in-patient stay with the Methotrexate. Hopefully he will feel as good after it then as he did this time. He has not been great about his studying though, although he is an awesome speller that he should do well anyways.
Other than that a quiet day. Jake and Ty - my outdoor boys played outside most of the day. Owen lasted a little bit before seeking refuge of the house because it was 'too hot'!
Tommorrow he is off for his blood transfusion. He will have to be up EARLY - Grandma and him will be out the door at 7am! YIKES.
He also has alot of mouth sores developing. He has not been doing his mouth swishes with Peridex very well though. He says with his stomach upset it makes him throw up - which it has. But the bottom line is he HAS to do them. He is usually very good about it and swishes for 10-15 seconds, but lately he barely puts it in his mouth and spits it out. So now we see the results of that. Because of the Methotrexate doing this Zarina said they may keep us LONGER after receiving this. This was the last chemo he received inpatient - remember how excited I was to learn we could have left EARLIER when reaching the .4 mark instead of staying until he reached .2, well they may keep him longer because of it causing the mouth sores to watch him! Hopefully not - if Owen will get better again about the swishes. She said even if he has to dilute the swish a little so it is not as strong but gets in his 4-5 swishes a day. She will confer with Dr. Dubowy to figure out what to do, but they may even just start with more IV fluids and/ or the leukovorin (rescue drug) next time.
His counts are going down:
WBC - 1.4 (normal 4.5- 13.0)
ANC - 650 (below 500 he needs to be cautious)
Hemoglobin - 7.9 (below 8 requires transfusion)
He will be getting blood on wednesday morning. Due to his reaction today they did not want to transfuse blood. His color is ok and energy level is good so they decdied to wait. He has to go early at 8:15 (transfusion takes about 3 hours). Grandma Pat says she will take him - he hasn't had any reactions to blood yet!
He was actually THRILLED to have had the reaction today! He is finally allergic to something! I said thats not anything you want... oh but to him it is. EVERYONE is allergic to something but him so now he has something too! "And in 10 more minutes my lungs could have closed and I could have died! Good thing I was at the hospital" Somehow this excitement he had was not as exciting for all of us!!! But again my superhero looks at things so positively & as an adventure!!!
He is off to Aunt Annas to spend the night. He was feeling fine, and they had planned to have a special night so we decided to let him go. They were going to church and then just to hang out at Aunt Annas. Owen was so excited - just the two of them. Anna use to be Owens daycare from birth till 5. Owen absolutely adores her. We use to tease Anna and cause her Hitler because she ran a tight ship, but as she always said - the kids behaved AND loved her to pieces!
So I am sure Owen will have a great night and it will be wonderful not to have him crawling into bed with us tonight and making me sleep on the edge of the bed! Of course I might forget how to sleep in a bed with room to move!!!
Have a great night!
All three kids are in different age brackets. So Chris took Jake over to his area, I stayed with Tyler and Owen went to his area. The Easter bunny arrives via the new fire engine and then let the fun begin.... all of about 1 minute of it!!! It goes really fast. Chris said Jake stood in awe watching the kids go crazy and finally Chris got him in the swing of it. He was able to grab 3 eggs. Tyler who LOVES the hunt was just a little too slow. Everytime he approached an Egg, someone swooped in and grabbed it. I finally grabbed him and ran to the back of his area and plopped him down. He was able to grab 2 eggs. I look over and Owen is wandering lost. I run over and he says he was only able to grab 1 egg and that is because it fell out of someones basket. Now Owen has never been the fastest of kids ( he has at least 4 pianos behind him) but then the stiffness in his legs didn't help. We talked about that before we even decided to go to the hunt but he wanted to try. One of Jakes eggs had a 'prize' ticket in it so Owen went over to claim the prize while Ty and Jake played on the playground.
The off to the mall. The Easter Bunny was on break when we arrived so we had to hang out and wait. Finally he arrives and Ty immediately climbs in his lap, he loves his bunny! Jake has Owen sit next to the bunny and then he sits on Owens lap. Although Jake got brave after the picture and gives the bunny a HUG!!!
Off to Bass Pro to see the fishies! Then we boat shopped. You know kind of like window shopping. We climbed in and out of all the boats and wondered how nice it would be to have one. Actually more like Daddy and the rest did. The boys had a blast climbing in and out of the pontoon boats. Jake wanted to make them go... now that would be a good trick. I am content to say "Yeah maybe one day.... " When EVERYONE is able to pack and fend for themselves! Walking out into our backyard in the summer works for me!
Home again and a little playing outside. Then a BBQ on the grill and now some 'quiet' time.
Tomorrow Owen has to get 2 chemos by IV and a blood count to check his counts. Grandma Pat is going to take him as it is a relatively nothing day, so I can show my face at work a little bit! Owen only had one belly ache today around noon. So seems like things are definately clearing his system! ( well till tomorrow....)
Have a good night and I'll check in tomorrow.
This morning he woke up with an upset stomach, so he took Zofran and stayed in bed for awhile till he was feeling better. I was off for a major store run... Lowes.. Walmart.. BJ's ... Bank... our house was pretty bare. He wanted to come but I didn't think with the way his legs hurt last night all that running around would be good for him (or me!). So he stayed home and Jake and I went on the marathon. Jake did great! No tantrums - came close at walmart when there was a dinosaur some kid had dumped in the checkout line, but he played with him till we were checked out then the lady asked for him back and he gave it to her without a word. I told him how PROUD I was of him. The Easter Bunny was at walmart but Jake only waved - he is still not to crazy about visiting with any of the holiday mascots! He said he would wait till Owie helped him.
I boiled 2 1/2 dozen eggs when we got home and had an egg painting day. Not too bad 2 dozen did get painted and only 6 broken. Tomorrow we are planning on going to the Easter egg hunt at Cayuga Elementary school and then going to see the Easter Bunny.
Later Owen and I went to the mall - I was in the mood to shop. However I just didn't find anything that grabbed me - not even any shoes!!! I hate it when that happens... so back home empty handed.
Should be a quiet night and a busy tomorrow! Have a good night & thanks for checking!!!!
Owen WENT to school today and stayed the WHOLE day!!! He had an awesome day. Grandma Pat was suppose to pick him up at 2:30, but Owen CALLED her and asked to stay until 3:30!!!
On the way home he was just beaming over his day, however they were almost home and he felt sick... then he threw up. Mostly dry heaves as he has not eaten at all. I just spoke to him and his tummy is upset, but he promises to eat in a little bit. He wants Mac & Cheese so Grandma is making it and hopefully he will eat.
Have a good night- if anything changes I'll let you know!!!
Arrived home at 1:30, got all unpacked, thru the stack of mail. Had to get in touch with our homecare supply company, insurance company - ahhh done - its 3:30. NOW life can return to 'normal'. So far it is so totally normal. Jake, Ty and I played outside. Owen's tummy is still upset so he is just lounging. - yep normal. Then back inside and let the fighting begin! I don't know why outside Ty and Jake play so well, but inside they fight over the same toy! Trust me there is plenty of toys to choose from! All is quiet again, Jake crashed and Ty and I are playing a V-Tech game. Dinner is almost done and then tubs and yes sleep in my own bed again!
I did find out we COULD HAVE been released last night!!!! The morning nurse explained how the analysis of the Methodroxate in his system works - there is actually 2 different levels that have to be met depending on which criteria you fall into.
They take measurements at hour 36, 42, and 48 after the start of the chemo.
If at 36 level is below 3 AND
42 level is below 1 AND
48 level is below .4 you can be released at hour 48 which Owen met all of these.
If he had failed any of the above criteria THEN he would have to stay until his level was .2 with checks being done every 12 hours.
Well we have to repeat this same routine 3 more times (every 3 weeks) so now I know and will be watching to get that early 48 hour release!!!!
Owen goes back on Monday for 2 different types of chemo IV's. Etopiside - 1 hour, and Cyclophospa for 1/2 hour, plus a blood count and check up. Then the following week just a check up. So the next 2 weeks are looking pretty calm not much to do, until Week of 24th when we repeat the same Methodrexate chemo he just had. Here to hoping we actually STAY home this 2 week break!!!
I am hoping to send Owen to school for a little bit tomorrow. His counts are good so he can. Just will depend on how well he does the rest of the night. So far no throwing up, but he has not eaten as he is afraid he will since his stomach is still off. Tomorrow should be a relatively 'fun' day as it is the last day before break and would be good for him to see everyone. So we'll see....
Have a great night and thankyou for always checking in!!!
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Thursday, April 6, 2006 9:45 AM
We are leaving! As soon as the docs finish rounds and the residents do the paper work we will be on the road. I am packing the car now!
Owen got sick 3 times last night, but it is just from the chemo since no fever is present. Poor thing - he was so good about it, just said he didn't like it, and wanted it to stop. We will just keep giving him anti-nausea meds to help.
I'll update later from home.
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9:24am
Ok so let me take you back a bit to yesterday. Everything is fine by the way. I call in our order to Outback Steakhouse. I ordered Owen a Jr. Sirloin which they said would be plenty big enough for an 8 year old. Off I go to pick it up. Chris was just going to take his home with him to eat as he needed to get home to relieve mom. So I get back to the hospital and take his out of the bag and peak at Owens. Well it is the tiniest of steaks. I know he is gonna freak. I bring everything up - Owen opens his and starts crying... there was hardly any there and he was 'starving'! Daddy offered to share his steak with him, so Owen was thrilled, so I walked back to the truck with Chris to get half of his. Chris arrives at moms to pick up the boys and leaves his truck door open while he runs in. He returns to find the neighbors dog Hershey has found his dinner in the truck and eaten it- the guilty is running back home as chris is yelling - just a tad mad!! Poor Daddy shares his whole dinner with O and the dog! So off to home he goes and makes a ham sandwich.
Last night Owen, Taisey McCarthy and Jonathan were playing the game of Life in the family room. At 11:30 us moms called it quit and went to bed. At 2am - Owens nurse/wife Brooke made Owen and the rest go to bed. She had him brush his teeth and then woke me up because he was didn't want to go to sleep - he wasn't even tired. He laid down and I bet he was asleep in 5 minutes! Course the whole room will sleep until noon today I bet!
Doc was in, said his first Methodroxate check was not too bad, it is 1.9 and he has to get to .2 in order to be released. So Owen needs to push those fluids today and pee, pee, pee! I am thinking of running home today - see my other little guys a bit. Chris has to work tomorrow so we will have to figure out a morning schedule for them.
Meg also sent us some Orgami birds from Japan. Once we got to the bottom of the candy in the box - we found more! These are birds made of folder paper and each one has a get well wish on it. In Japan they give these birds to people who are sick to help them recover. Her and her friends sent over a 100 of them!!! We have them hanging on Owens IV pole to look down on him and give him strength!
Thankyou Meg (and all of your friends too) they are awesome! We have gotten a lot of compliments on them - everyone wants to check them out!
Things have gone smoothly so far. Owen did get sick last night but we are thinking it was more due to eating too much junk. He was eating chips and then popcorn while playing monopoly with the the nurses Ben and Brooke (his wife). Around 10 he started not feeling well, Zofran didn't seem to help so at 11 they also gave him Benedryl, but no good he still go sick. He immediately fell asleep after that and slept until 10:30 this morning! Almost 12 hours. He has been feeling fine so far today and actually JUST finished his chemo. So now he has nothing until hour 42 (around 2 tomorrow ) when the 'rescue drug' will be given to save his good cells and force the chemo to only attack bad cells.
Grandma Pat came up this morning and brought Owen NARNIA! Thankyou Grandma Pat. I told her this is working out to my benefit being in the hospital on the New Release days! She has brought the last three as gifts for Owen - Chicken Little, King Kong and Narnia! Daddy is here now and we are going to have a 'family dinner' from Outback tonight. We promised Owen he could order out one night.
Owen got a present from JAPAN today!!! Megan Churney is over in Japan as an exchange student for the whole year. She sent Owen a box of Japanese candy. It is delicious. We will probably all end up with stomach aches today! One of the candies taste JUST like grapes. Owen doesn't understand why Japan makes the good candy. He is usually not a big candy person but he sure likes all of these! Thankyou so much Meg!!!!
It is official - we are going the 2 year protocol. The detailed Fish test of his testicle biopsy is in and the translocation from his original leukemia DID show, however it was so minute that the lab would not even put it on an official report. The fact that the specimin was 2 months old could have also attributed to this. So for now we will forge ahead with the 2 year protocol but for safety - a bone marrow aspiration will be added to his protocol everytime a spinal tap is done, to monitor regularly for a relapse of the AML and should it show we can look to go to transplant. We have also switched our doctor to Dr. Dubowy and NP Zarina. We feel really good about this change and are relieved to have someone who we feel with pay closer attention to his diagnosis and progress.
I will check in if anything changes but looks like a quiet night.... I like quiet!
Good night and thanks for looking in!
Monday, April 3, 2006 1:03 PM
Owen is all checked in at the "Hospital de Royale". We arrived at 10:00 and our room was ready! Got all settled and blood drawn, and IV fluids flowing. As of now (1:00) his chemo has not started. They have to fill up his system first with lots of fluids before starting due to the potential liver damage it can cause. Once he is able to start it will run for 24 hours. Then at hour 42 they will give him the "rescue drug" Leucoverin to help him recover. He will receive this every 6 hours. I have updated the page with our room number and phone.
I was teasing Owen on the way here that he would arrive 'just in time' to work with Mary Ellen the tutor on some homework! She was on the floor - first person we saw - but has not made it down yet - but she promises too!!! Owen is wearing his new camoflauge T-shirt Grandma Pat bought him. "Shhhhh - I am hiding from my Homework!" Boy if that doesn't sound like Owen. He loved it!
Ethan Moore (2 years old) was here - he is the son of Jim (Bummer) and Thersea Moore and they just learned last week that he had leukemia. Bummer and Tom Moore are brothers and last year Toms son - Jonathan was diagnosed! Wow how much can a family do! They are in good spirits and adjusting. As we said - people are always wondering "how you do it" but then it hits home and you 'just-do', it becomes just a part of your life. Please keep the Moores in your prayers as well.
When we arrived home Aunt Shelly, Uncle Pete and PJ were here. So we spent a few hours hanging out. Owen and PJ had a blast as usual together. Then Papa W., Grandma Lee, and Great Grandma Mary stopped by. We were out playing baseball and riding the 4-wheeler. I then brought up a bunch of the outdoor toys from the basement and we had an awesome day playing together - our last day of 'freedom'. Owen even got in some target shooting.
I called the hospital tonight to try and figure out what time Owen should go in tomorrow. The last few times we didn't have to go up till late, so I could have gone into work for awhile. I miss so much that I feel guilty. But alas tomorrow he needs to be there between 9:30 and 10:00.
So heres to a quiet and uneventful week and hopefully and a quick return home!
Goodnight & set your clocks ahead if you haven't already! LOL
I got most of our closets switched around - just Owens to go... where does all these clothes come from! I have a whole stack of bags for donation to boot! I hope the weather stays nice or we will be quite cold, I didn't leave out to many warm clothes! Little anxious I think!
Mrs. Smith came to work with Owen on reading and vocabulary. He worked really well and enjoyed having her here. We have a good base to go up to the hospital with and keep busy too! Mrs. Smith brought some letters from the kids again and I want to share a poem that Kevin sent to Owen. It is by Nicole Richie but is just awesome that friend would write this to Owen!
When you are sad
I will dry your tears
When you are scared
I wll ease your fears
When you are worried
I will give you hope
If you want to give up
I'll help you cope
When you're lost
and can't see the light
I'll be your beacon
shining so bright
This is my oath
that I pledge to the end
Why you may ask
Because you're my friend
Just Beautiful!!! Thankyou so much.
Well Papa Fred and Grandma Lea are here to watch the basketball game. I'm ready for a fun and relaxing night!
Have a great night!
We watched the Multi-Age Joke DVD last night. It was really great - all the kids in Owen's class each took a turn telling a joke. Owen loved it! I think it meant alot getting to see each of his friends. They even had a blooper section - how funny! Thankyou so much for making his day!!!! His school and teachers are an awesome support system. They are always thinking of things to do to keep Owen in the loop. We appreciate EVERY bit of it!! Thankyou.
Owen asked to have his friend Sean over to spend the night. "I haven't been able to play with my friends or do anything in such a long time - PLEASE..." How can I refuse that! So Sean should be here anytime now, and I can see the excitement building in Owen, he just can't wait. It will be nice to let him just be him and have fun. Especially with several more days in the hospital looming...
As always thanks for checking in!
Well so much for my plan of getting Owen started early at 6 so I could be out by 7:15. I got Owen all ready and then came downstairs and was getting ready for work. I stop and listen... DING DING DING... what is that? I run upstairs. There is Owen and Chris dead to the world sleeping and his IV is beeping like crazy. OOPS I forgot to unclamp him so no medicine could go in. So a little bit of a late start.
Owen had a pretty good day. His legs have been hurting since last night. He is just a little stiff when walking. He has also been coughing a bit... oh I hope nothing is coming back. He needs his counts up - ANC (total immune system) has to be over 750 and his platelettes at 75. So any illness could knock him down and delay Monday.
Mrs. Vasquez came today for tutoring in Math. She said Owen did well - we have been trying to work those multiplication tables!!! She brought a CD from the kids in his MultiAge class of 'Multi-Jokes'. Can't wait to listen to these after dinner! Thankyou - can always use a cheer me up CD! The Carters stopped by with a DVD 'Yours, Mine and Ours' - this movie makes my house look quiet! Thankyou! And then a nice card from Grandma T with $$$, this should help fund his savings for a new game he wants. Thankyou Grandma!
Other than that a quiet day and restful day for Owen. As always thankyou for checking in on us!
Owen had a good day. Spent alot of it playing outside. Took a little nap. Then went to Papa W's and skipped stones in the lake and then back home to 'mean mommy' and homework!
Owen got a wonderful gift from my friend Maureen and her family. They sure know Owen - it was right up his alley. He got a Batman fleece blanket, a batman and joker car, a Batman Begins book, snickers candy bars and a very nice drawing from Jamie. Thankyou thankyou thankyou - he loved it!
We are settling down to a nice family movie night, but I think we will all be asleep before it is over. We are watching King Kong and its 3 hours! Jake is already looking sleepy eyed and Ty is all curled up.
It really did feel good to have a 'normal' day, go to work, come home to cook dinner and have no where to go!
Have a good night and we hope to enjoy the next several days of freedom. We will definately make the best of it!
Per Owens request we had a cook out tonight - yeah you guessed it STEAK. Obviously Owen is not allowed to make any requests for a while! Two nights in a row!
We are settling down and happy to be home and ready to hit out own beds!
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Tuesday, March 28, 2006 9:03 AM
Wahooo!! Owen is doing amazing on his blood counts!
WBC 3.3 (4.5-13) up from 1.4
Hemoglobin 9.8 (11.5-15.5) up from 9.7
Platelet 20 (150-400) up from 15
So he has gone up all on his own in all three areas. So he no longer needs to get the platelettes today. It means his bone marrow is recovering and he is producting all on his own! He is getting his antibiotic now, then he needs to shower and get his bandage changed, I have to do one more 'training' session on the IV and we should be on our way! I better get a move on packing up - that could take awhile!
Alas though our 'time-off' is not as long as I thought. Owen has to return on Monday ( I had originally thought it would be on April 7th). He will have high dose Methotrexate. This will run over 24 hours, but he can be in the hospital anywhere from 3-5 days depending on how fast the methotrexate leaves his body. He should feel reletively well throughout it, but because it is high dose, they have to keep a close watch on him and his liver levels as this chemo can be very damaging to the liver. He will be receiving Leucoverin which is considered the 'rescue med' to help him recover every 6 hours after receiving the chemo.
Owen then decided he was hungry and did NOT want his chicken Kid cuisine which is all he has eaten for days... so what did he want? Steak of course. So I had to order it from a restaurant and go pick it up. He ate half the meal and is going to eat the rest right after his homework.
Then he is free for the night to play!
Have a great night and I will touch base befoe we leave tomorrow - yeah!!!
Monday, March 27, 2006 9:38 AM
It is official - pending any problems of course - we are going home tomorrow!!! Doc was in and they are going to switch his anti-fungal to oral today, stop one of his antibiotics, and get the request in to train me on the IV at home. I will have to administer one antibiotic at home. He will need the IV until next tuesday - he will receive the antibiotic every 12 hours. He has to come back Friday at 9:00 for a blood count, blood culture and checkup. His blood and platelettes are not quite low enough for transfusion today, so they will wait one more day and give him these tomorrow morning.
His WBC has jumped to 1.4 YEAH!!!! (normal is 4.5-13.0) Definately making progress. His ANC is just over 500 - this is number that calculates his whole immune system. Anything under 500 is considered dangerous, and is where they have to be watched closely for getting sick and fevers. So Owen has officially made it over the hill!
Wow I feel great - it was a long road this time from that 'little fever' he had. I'll check in later - but looking forward to a good day!
Chris brought Tyler and Jake up with the docs okay. I played with them in the playroom and then they raced the coupe cars up and down the hall way. They were having a blast. I had to keep reminding Jake to be quieter he would get all excited with his playing and using his outdoor voice! They sat in the family room for a while and ate lunch - Grandma Bonnie brought up KFC - yum! Then they had chocolate ice cream for desert. Jake found some dinosaurs in the playroom so he was in his glory. Tyler painted alot of pics and they just went from activity to another. Finally they were ready to see Owen. I told them once we went in the room playing was all done. They wouldn't be able to play amongst the other kids after being exposed to Owen. Although he is probably fine by now, since he will be going home shortly and the room could still be infected they don't take chances. So in they went and played with Owen a few more hours. Owen loved having his brothers here. He was out of bed all day and in the best of moods. It was just awesome to see. Grandma Bonnie brought some HIP HOP Frogz up - they are singing frogs - these ones sang rap and country. They were a riot, the kids (and nurses) loved them. Thankyou Grandma. She also brought Owen the Harry Potter Scene It Game. We were going to play it tonight but Owen pointed out it is on a DVD and we do not have a remote for the DVD player to select answers and questions, so that will have to wait till we are home. But sounds like fun Thankyou Grandma! Jake was alittle upset to leave. He wanted to stay with mommy and wanted to take home his new dinosaur treasures he found.
Owen I settled in and did some reading /math homework. Then Owen played some 'Whos Wants to be a Mathionaire' Multiplication Game on line that Mrs Vasquez gave us a link to: http://www.mathsisfun.com/games/mathionaire-multiplication-quiz.html
It was alot of fun. Owen wishes they would really give him the million dollars - so do I!!!
So sounds like a good night so far, and fingers crossed tomorrow or SOON we will be homebound. Thanks as always for checking in on us!
Sunday, March 26, 2006 12:30 PM
Wow today is getting better and better! Doctor was just here. He is impressed with Owens increase in WBC and he also has neutrophils and monolytes again which is great news. Shows his system is definately recovering. IF he continues to feel well today and his counts improve again tomorrow it is a POSSIBILITY that Owen will go home tomorrow. If not tomorrow then probably the next day. He will need blood/platelettes tomorrow so they will re-charge him before we leave. I will get trained on the IV, as he will get sent home on at least one antibiotic by IV and then the anti-fungal med orally. Wow I am in a daze this was not what I was expecting - but very exciting. Just hope it is not being rushed. I will feel better if he has no fevers! But so far so good today!
Sunday, March 26, 2006 9:30 AM
Doing the happy dance here!!! Owens white blood count is .6 - so that is tripled from thursday (doubled from yesterday). Now I know it is still very low but that is the most significant change he's had in 2 weeks!!! The nurse was laughing at me I was so excited when she told me.
Owen had a good night, he had spiked the fever just before I returned 38.4 (101.2) but didn't get the tylenol until 7 and then that was it for the night. He was in a great mood all night. He is still sleeping now, and actually I slept until 9:30!
I'll update later - but I couldn't wait to share the news!
Grandma Pat came up to sit with Owen I ran home for a couple hours to hang with Chris and the boys. It has been a while since we have all been together at home, with Chris feeling good. So that was a nice day. It was short because I had a late start with Owen sleeping late and I needed to head back early with the Billy Joel concert tonight I didn't want to get stuck. I think I timed it just right. I flew right in until I got under the Adams St. bridge then I was stuck for about 15 minutes. But by the time I got in and settled I looked out and the line was all the way down 690 to get off that exit!!!
Owen and Grandma had a good day. He spent most of it out of bed. They played Monopoly and then built some things with Magnetix sticks. Owen started getting a chill and sure enough he had spiked 38.4 (101.2), so he laid down and they watched Tower of Terror.
The doctor came in today - different doctor yeah!!! He actually came in examined Owen and talked with me! This is actually the doc I believe we are leaning to switch to. Anyways - he does NOT believe Owen has an infection in the tube line again. He said that would be VERY rare as he had the infection and then has been on straight antibiotics through the line and all the cultures have been negative since the one on the 14th, until the one on the 22nd and now they are negative again. If Owen had gone home and then came back it would be possible for the line to have become infected again but not with having been here with antibiotics running through it. Also because he went a couple days with no fever and now is spiking with very high fevers that points to a fungal infection inside him. So he is starting him on an anti-fungal medicine today. Plus his WBC did go up from .2 to .3 today. Not much but the fact that it did go up is promising that his body is starting to handle it and is still able to produce counts. I asked if there were a way to determine if it definately was a fungal infection. He said they could to a CTC scan however due to him being Neutropenic (low counts) this could leave lesions on his skin that would not heal. Since they were going to treat him anyway they would wait on the scan until he had higher counts or if this new medicine does not help. I voiced my concerns over his low counts and all the high fevers he is having and how much danger he was in. He said I did not have to worry, that he was on plenty of meds and under supervision and they were not concerned. So I guess I am feeling better ? not really sure. But if felt good to have someone talk to me. So we continue to hang and wait.....
Hopefully things will remain stable or get BETTER. But through it all Owen is handling it the best of any of us. Minus his couple of breakdowns he really has been great. (He does grumble when mean Mommy makes him do things he doesn't want to - but hey that is nothing new!)
Saturday, March 25, 2006 8:59 AM
Well I no sooner signed off last night and Owen spiked high. 39.4 (103)! Once again Tylenol was not bringing it down. I put cold clothes on his head and eventually 1 1/2 hours it broke - or decreased to 38.1 (100.6) and remained there all night. Needless to say he did not get that shower. He will need one today he was so sweaty. He just climbed over to my bed because his is soaked.
He was up until 4am last night though. I woke up at 4 to find him watching TV! I made him turn it off, he said he had fallen asleep but woke up with his legs cramping so he turned on the TV.
Detria our nurse last night showed Owen a bunch of leg exercises. Without being able to leave the room it is hard to get that exercise in. I made him to room laps the other day - it is hard with him IV pole and the room is small. But yesterday he didn't get out of bed except to go to the bathroom. So that was great when Detria worked with him. He grimiced that it hurt but he kept going for her. Hopefully he will do the same today for me.
So he is still sleeping now - but I will let you know how our day progresses.
Owen continued to run fevers all day most of them were low but he did spike to 39.3 (102.8) at one point. He dealt with it fine for the most part. He worked with the tutor for over an hour on Math-Safari. It is a video game that makes you practice math facts. So right up Owens alley with the video game but right up mine for practicing multiplication!!! She left him both the Math-Safari and Geo-Safari to use all weekend.
Owen received a big packet of letters from Tylers 1st Grade class - Mrs Cecchini's. How wonderful and thoughtful Thankyou so much. Owen read them all as soon as I brought them in. He really enjoyed them, I had to help him read some of the hand writing. Then he commented how he never wrote that messy - I said what do you mean you still do! "MOM!!" Ok you are improving. :-)
Owen had a little melt down last night. He was watching TV and a country song was playing - he started crying. I couldn't figure out what was wrong. Then he told me it made him miss Pam and Samantha. They always play country songs on the way home from school in the car. So today Pam called Owen to find out what songs he likes and she ran me over a portable CD player with a couple of CD's. Owens favorite is Beer for my Horses! Thankyou Pam you are the best always helping us out!!!!
Well we are off to the showers - I know a little late but he wanted to wait for Mom. So we got to get things rolling!
Have a good night and hopefully we will too.
Friday, March 24, 2006 8:54 AM
It was a much quieter night last night but alas not without fever. He started around 10:00 with 38.1 (100.6) and remained steady at that through the night and at 9:00 this morning he has risen to 38.6 (101.6). His cough is back and driving him crazy again but they will give him something for that - they don't want him hurting himself with a bad cough.
Doctor came this morning and his culture from the 22nd has grown positive. They do not know what yet it has to grow more, however if it is the same strand of Strep as last time because the culture it grew in was the red lumen line of the hickman - then the hickman has to be removed. The nurse is taking another culture right now because they want to have a second culture to prove it is indeed the bacteria. It is strange that he went several days with negative cultures and then another positive again - so they just want to be sure before they remove the hickman line.
I am going to head out - Mom and Chris are here, so i can repack - we'll be here a while longer. I am going to try and reschedule Tylers appt and get that in too. So I will update later - but hopefully it will be a quiet day.
It was quite the scene here this morning, everyone came rushing up. Grandma Bonnie, Grandma Pat (Uncle Steve babysat for Jake how cool), Daddy (finally feeling better), and then Papa W and Grandma Lee came after a doc appt - although they were blind sided since they don't have the internet and didn't realize what had happened last night. Owen had an okay day, and is actually feeling really good now.
Jake and Tyler are spending the night at Cousin Nicoles house. She will get them up and back home in time for school. They had a blast with her and are loving being at her house with little Duncan (the puppy whose pic i had on the front page a while back). Course I am not so sure on how happy Duncan is that they moved in. But I am glad they had a great day. We blew off Tylers chest check though today in the panic so I need to reschedule to make sure his lungs have cleared with the breathing treatments.
Good night - I should be asleep as soon as my head hits the pillow.....
1:00 PM
New room and phone number. Just moved to a smaller 2 bed room - but still by ourselves.
Fever has finally broken. He has gotten both platelettes and blood and is holding a steady 37.1 (98.8) temp. They came and did an X-Ray but we don't know the results yet. Have not seen the doctor yet. He was on the floor earlier when they were doing the X-Ray and now he is gone and has not even been in!!!! I am not happy. I have a child who runs over 103 for 12 hours and you don't even stop in to check him!!! The nurse said he will be back later - if not I need to see one of the docs I have have major questions and need answers!
Thursday, March 23,2006 6:35 AM
It has been a long and frustrating night. Owen has run a fever NON STOP. He ran mostly around 38.7 (101.6), but twice spiked up to 39.8 (103.6)!!!! His heart rate really increased and his blood pressure dropped. They flushed some extra fluids rapidly through him to get the heart rate back down, and his blood pressure has returned to normal. Although a close watch is being done on his vitals to make sure he doesn't do this again. His platelets have dropped to 8 and his hemaglobin to 17 so he definately needs plateletes today and will probably need regular blood soon too. The fevers will just chew up his blood supplies quickly. As for WHAT is going on - no one seems to know. I am officially freaking out and very scared. He has no immune system basically - his WBC was .3 so that is probably gone now too. To run this fever for so long and at such low counts is not good. The nurse just came in to take his temp and it is back up to 39.8!!!! He can get tylenol at 7.
I'll let you know as soon as I can - please pray for Owen that these fevers end and we can find out what is going on.
The resident came in to check Owen over during his last fever spike at 6:30. She said if he continued tonight with fevers they would probably order the xray tonight rather than wait till tomorrow. His lungs sound really clear though, but since he did have the coupld of suspicious spots that they weren't worried about on his first xray - they may want to re-look at them now since he is starting up on fevers again. Oh I wish I knew what is going on with him!!!! They still 'feel' it is the flu causing the fevers, but it is just weird they went away for 2 days and have now returned.
Owen did have a little break down earlier in the day that I want to share. The mind of an 8 year old:
Owen is crying and is tired of being here and just wants to go home - so I try to reason with him.
Me - "I know honey - but right now here is the best place until you are healthy. Home will always be there as soon as you are ready to go."
Owen - "How do you know it will always be there? Something could happen like a fire!"
Me - "Well home is where your family is so we would always have a home somewhere" Now I thought that was a pretty good answer right???
Owen - "I Don't want to move!!! I like where we live, all my friends are there."
OHHHH I give up! Needless to say this was a very short burst and he was back to his happy self. His most exciting news of the day:
HE BEAT THE BATMAN BEGINS GAME!!!!!! HE IS JUST SOOO HAPPY OVER THIS.
Have a good night and pray for these fevers to end, and Owen to be healthy again! Thankyou for your never-ending support!
Wednesday, March 22, 2006 12:00 PM
Oh we seem to be going backwards!!! Owens fevers are back. He spiked another one last night 38.3 (101) and then again this morning 38.6 (101.4). It may be just the Flu causing the fevers again, OR possibly his hickman line not clearing of the bacteria OR something brand new. The cultures they took yesterday can start to show something after 24 hours so this afternoon, but could take up to 48 hours.
He woke up with a tummy ache this morning which seems to be standard these days and took Zofran. But other than that and the annoying cough he is in good spirits. The doctor may give him a cough suppressant for the cough, he said unfortunately the cough could stay for a few weeks! His white count went up to .3 not much but that is up.
Unfortunately with the fevers again he could be using up the WBC as fast as they are producing.
He did work with the tutor Mary Ellen for over an hours this morning. Working on Perimeters and Areas. They worked on some math facts and some vocabulary. He worked really hard, and was in a great mood with her. Lets see if that lasts when Mom kicks in for the afternoon Reading session!
He took a nap this morning and is now getting his hickman dressing changed.
I'll update later but hopefully there will be no 'excitement' today.
They he spiked a fever!!! Yes the dreaded fever!! It was only 38.1 (100.6) but that was taking it under his arm. They couldn't do it by mouth because he is coughing too much. So it was probably higher. Mom said his cheeks were flaming red. He had some Tylenol - had some cultures taken to check for any new infections. He didn't feel much like playing any games or reading so Grandma had bought Chicken Little (Thankyou!!!) and they settled down to watch that. Shortly after Owen took a nap.
I spent a few hours at work and then home with the boys for a couple hours. I brought Jake back to the hospital with me so that was a little sad for Tyler to see me leave with Jake, but I promised him he would go bye-bye with Mommy next time. He has a doc appt. thursday so either before or after I will bring him up to say hi to Owen and have a little fun with him. Jake is spending the night at Grandmas so Chris has it a little easier with not feeling well.
Owen was eating when I returned. Mom said it was the best he had been all day. Jake was thrilled with the hospital and all the cool stuff. He immediately latched on to some cookies hanging around, a few toys Owen had received and was just snooping into everything!!!
Owen and I did some reading, vocabulary, math and math facts. I got a good 1 1/2 hours out of him!!! Now I know you know there must be a secret.... you got me. I promised to help him on his PS2 Batman Begins where he was stuck if he worked real hard on a bunch of stuff. But hey it works he did alot and together we figured out batman - so every body is happy. He has been fine since I have been back - except ALOT of coughing. Hopefully getting everything loosened up and out of his system!! Pray these fevers go away for good and not something new brewing!!!
Have a good night and thanks for checking!!!
Tuesday, March 21, 2006 10:00 AM
Owen had a good night - actually ate again at 10:00! I slept very nicely in the bed!!!!
Owen is very stuffy this morning and coughing alot. He isn't feeling that great right now. He was dry-heaving and the nurse gave him Zofran. He is going through tissues like crazy. How ever NO fevers so that is good. Seems like it is settling down now to cold symptoms and hopefully the fevers are gone. Doc says he sounds nice and clear and if the fevers stay away he will be released to go home on Saturday. Oh so far away... but here is the best for him with his low immune system and knowing he has the flu running around inside him.
Grandma Pat is here to give me a break again - I am going to run into work to go through the mail / bills and touch base and then I will stop home for a visit, with the other boys. Chris is still not feeling well - I believe he probably has the Flu too or something similar but to get him to go to the clinic would be a miracle!!!! He will just weather it out. I'll update later today...
The good news is Owen seems to be feeling alot better. No fevers again today, and he has eaten twice and is drinking quite abit! So he is probably half way through the whole bacteria infection and Flu and on the upside to it. He has his own stethoscope, thermometer and blood pressure cuff due to being infectious. And since they can not use them on anyother kid I guess he gets to keep them!!! The real things! He is so excited.
I feel bad though that we have been running around the floor - hopefully NOT infecting anyone else, except maybe Daddy!
The other GREAT news is since we are in isolation I get to sleep in the other hospital bed instead of the parent cot. So should be as good a nights sleep as possibly can.
Mr. Jorgenson and Mrs. Vasquez came up for a visit. Thankyou!!!! I guess Owen was his normal - full of it - self. Grandma Bonnie came up too and her and Owen had a Monopoly match. Owen then did some homework, and now he is on to Play Station. So it has been another good day. His days seem better now, and now he has been moved to isolation!!!
Monday, March 20, 2006 11:14 AM
Owen had a good night. He ate his Chicken drumstick Kid cuisine - gobbled it more like it, so that was good. He slept good and came close but did NOT spike a fever. Jen said it was 37.9 at 6am - 38 (100.4) is considered fever. So Owen officially made it one day with no fever! Doc says if the fevers stay away then the WBC may start to return. I said so that means we are staying on 'holiday' a few more days? He looked at me and asked if we had been planning on going somewhere - aww No - joke i meant here. Yes we will be in the hospital for a bit longer. As long as Owen is on the way to recovery that is what counts.
Owen got plateletes this morning and had a reaction to them. He started coughing alot, and at first we didn't think anything of it, just that his cough was worse this morning after such a great day with little coughing yesterday. But then it was constant, and then what looked like mosquito bit appeared on his forehead. Doctor was there and said it was hives he was having a reaction. The nurse went and got some benedryl. The plateletes were almost done so they let them complete. Poor Owen he was struggling - and just didn't like it. Slowly the cough started getting better, they went to get another drug to help speed even more with the reaction. He will now need to get medicated before any blood products since he had a reaction. This did happen last time around but so far he had been fine this time.
Grandma Pat came up this morning to relieve me. Chris is definately sick so he is off limits. I thought I had dialed the wrong number this morning when I called home. Once Owen had stabalized I headed for home. I surprised Jake and picked him up from pre-school. I will spend the day with him, and then with Tyler for a little bit when he gets home from school and then head back up. I will update later on.
Sunday, March 19, 2006 10:35 AM
Owen finally ate last night! He had a Mac & Cheese Kid Cuisine. He ate all of the corn and 1/2 the mac & cheese. Then he drank 2 whole glasses of water. YEAH!!!!
So far today - nothing, I am working on it though. He actually only got up at 9:30 so he is slow to start eating in the morning. However he has had some Zofran already and I am getting him out of bed and moving. He did not get out of bed yesterday at all except for his X-Ray and then later for his shower. He can not do this especially with pneumonia just waiting to sink its teeth in!!!
WBC remained the same at .2, his platelets dropped to 23 so he will get a transfusion either later today or tomorrow for sure. His hemoglobin actually went up so hopefully that is a sign of things starting to go on their own????
Chris DID throw up last night so he probably has some sort of bug, he says he is hurting all over this morning. Hopefully he is able to rest and get back to himself soon!!!!
Owen's X-Ray came back ok. He had a couple of 'suspicious' spots for pneumonia but they are not worried about it. He is on antibiotics so as long as he doesn't get any worse with his cough. His nose has started dripping today too. It is clear though, but they did do a culture on that too while I was here. Owen took his hour long shower when I got here and was quite chatty and in a great mood. Then his tummy started getting upset again. I went and asked for Zofran but it had not been 8 hours since his last so his nurse had to check if she could get it approved. He could have benedryl but that makes him sleep so he didn't want that. Well 5 minutes later he was throwing up. He changed his mind and wanted the benedryl. We finished washing up (good thing he was still showering - he didn't have to get cleaned up!) and headed back to the room. Owen got his bandage changed. The nurse put a smaller patch on it this time to help his skin heal under where the patch usually is. When in the hospital the patch has to be changed every other day, so that can start to really tear up the skin. Now he started a temp 38.9 = 102. Poor thing- I just feel so bad for him it just keeps going and going. The nurse is going to look and see if any of his other cultures taken after a fever have shown any other bacteria growths or is still showing the existing one. No one has reported anything on the cultures since the first one taken tuesday night. Just like Owen said - he is now sound asleep.
Here are his last counts, with normal in parenthesis:
WBC (white) - .2 (4.5-13)
RBC 3.8 (4.0-5.2)
Hemaglobin 11.1 (11.5-15.5)
Platelet 34 (150-400)
His WBC did go up .1 so hopefully they will keep going up and these antibiotics will start beating back his temp so he will be able to come home soon. As much as I want him home - I want him safe, and if this is the best place then here it is.
I'll update later if anything changes!
Saturday, March 18, 2006 12:38 PM
Quick update - Owen had to go for chest xrays this morning due to a crackle in his lungs. Don't know the results yet. He still is not eating well and the doctors are STRESSING how he has to eat!!! He did try this morning and then threw up, which is why he doesn't want to eat.
Uncle Steve had just shown up for a visit when I was talking to him this morning.
I have some errands to run and then will probably be on my way back up so I will update then when I have a better feel for what is going on.
Talk to you tomorrow - thanks for checking!!!!
Friday, March 17, 2006 7:10 PM
Owen had a pretty good day. He threw up after drinking 1/2 a pediasure. We are just trying to get something into him. The doctor is concerned that he is not eating (and so are we!)
Grandma Pat came up and the three of us played a game of Monopoly Jr, and then headed over to the St. Patrick Party. There were games, button making, face painting and snacks. Owen enjoyed being up and about and getting to have some fun. I have put some pictures on from it. Of course he made a Batman Signal Magnet and got both the Superman emblem and a spider on his face! We stayed for about 30 minutes and he started not feeling great. He was on the verge of a fever when he got back to bed (37.9 = 100.2).
He laid down and then Barb came to get his vitals and he was having attitude. Barb warned him several times that she was not going to listen to his grunts but he kept it up... so as you'll see in the pictures she let him have it! That seemed to do it though, he was laughing and in a much better mood. The nurse came in and started his blood. Hopefully this will boost him up a little.
I left at 3:20 to head home. Stopped at the store, work and then home. Chris headed up to relive Grandma and HOPEFULLY spend the night. The nurses laughed when I said I wouldn't be back...
I talked to him right before I got home and he was in a good mood. He was working on another pediasure, but thought he might take a nap because he was getting sleepy. I'll check in a little later and update if anything has changed.
Friday, March 17, 2006 11:48 AM
Hi, sorry so late, waiting to get all my information before I updated. I did come back up last night. Owen needed Mom, he was very whiny. He was complaining of bad stomach aches, and then he spiked a fever (101.8). Other than that it was a quiet night. I fell asleep thru the SU game and had to find out this morning that SU made history by losing in the first round of the NCAA for 2 consecutive years!!!
Owen DOES have an infection in the red line of his hickman. It does not mean right now that he has to have it removed. They will continue to treat him with antibiotics. IF this same infection were to come back in this line they would at that point have to remove the line and conclude that they were unable to treat it. So for now the hickman stays. The infection in the line is Streptococci - which is the bacteria that they are indeed on the watch for after the ARA-C chemo treatment he received. For some unknown reason they seem to go hand-in-hand. Owen will have to remain in the hospital at least for the weekend. Right now he has no white blood count so they will not release him with a known bug in his line. Once his counts do return their is the possibility of us being released to home. However I have to be trained on administering IV antibiotics. The bacteria he has needs to be treated by IV. I am fine with that and would rather have him home than having to remain in the hospital for 10 days just for antibiotics. They would train me here, then send a homecare nurse to the house when we get home to re-train and then I will be ready to go (I hope!) Good thing I have lots of nurses in the family to give a yell too, I can also have the homecare nurse come back. They can't say for sure they will do this, it all depends on when his counts come back, on whether it makes sense to go through it.
Owen will be getting blood today. He is blending right in with the sheets on his bed! He returned about a half hour ago from another tutoring session at the hospital. They worked on multiplication facts today. They had to end a bout 5 minutes early as he was getting an upset stomach. It actually worked out because the doc was ready to examine him. The biggest thing - OWEN needs to EAT!!! He has a pediasure right now and he HAS to drink this before he is allowed to go to the St. Patricks party. Although I am not sure how this is working - he says his tummy is too upset to go to the party.... Owen you need something in your belly!!!!!!
I'll give you an update later!
Back at home - I arrived basically re-packed for later and out the door we went for Tylers appointment. He is on an antibiotic for his sinus, and has to start breathing treatments for a crackle in his lungs. He use to be on them alot when he was younter but has not needed one for 3 years now. So I dug out the Neubulizer from the basement and he will need 3 treatments a day until further notice. He has to go back next Thursday to re-check his lungs. So after the docs, getting the prescriptions - stopping to get crickets for Owens lizard we arrived home at 5:00. Wow what a day off eh?
Then to top that off as I was dumping the crickets into their cage I spilled them so I was scrambling to get them all rounded up but I bet there are still a 1/2 dozen running loose. Great! Should provide some great music tonight!
I am not sure if I will return to the hospital tonight or in the morning. Owen wants me to come back, but Chris is going to work on him and see if he will let me have a night at home with the boys. I am ready for a real nights sleep!!!!
I'll let you know if anything changes!
I am not
Thursday, March 16, 2006 10:09 AM EST
The doctor came in at 10:30 last night and informed me that Owen did have an infection growing in one of the blood cultures taken from the hickman line. It does not mean the line is infected just the sample from the line has grown something. Please pray that it does not mean that!!! To remove Owens hickman now would not be good as a new one really can't be put in with his white count so low. As of this morning it still has not been identified what it is, but it can take upto 48 hours to fully develop.
Owen spiked another fever at 5 am, so they took some more cultures at that time - and the hickman worked beautifully! Hopefully by running the TPA to remove blockage and now running IV thru the line constantly - no blockage will re-occur. The poor nurse was just dreading have to take the blood again as it was the same nurse who tried and tried for hours tuesday night. So she was soooo happy when it just flowed right out.
Chris is on his way up and I will go home to repack - I only keep a 2 day supply ready. I'll come back up later tonight. I have to take Tyler to the doctor at 2:15 he has a deep cough and nose is gushing.
Thankyou for checking in with us and I'll keep you posted as things develop.
He feels okay now that he has the Zofran, the temp wasn't bothering him. The doc came in to examine him and still believes it probably is viral since nothing has grown yet, but there is still a few hours left to wait.
The doctor asked how Owen was doing in school with missing so much the last couple of months. I told him he was doing well, that we were going to need some tutoring to catch up here for these last few weeks but otherwise he was doing great. He asked Owen if he was good at math and Owen said yeah.... So what is 1 plus 1 ? Of course Owen answers 2. The doctor tells Owen he can PROVE the answer is 1. Owen does not believe him.... so.... On a farm there is one hay stack to the left of the barn and one hay stack on the right. The farmer pushes the hay stacks together - how may hay stacks do you have? Hmmmm got you.... Don't worry Mrs. Vasquez I won't let the doctor teach Owen too many math facts!
Wednesday, March 15, 2006 4:30 PM
We still have not seen the doctor. He did half the rounds this morning and then went to clinic for the rest of the day. We should see him some time shortly. However Zarina the Nurse we have been working with alot came in to check on us. She told us generally after receiving ARA-C (which is the chemo he got over the weekend) a fever is taken serioulsy. ARA-C can cause bacterial infections and Owen will probably have to say for 48 hours fever free AND see a rise in his white counts AND have his cultures grow back negative. So in other words we are probably staying a few more days. She agrees that it is more than likely his cold that caused his fever but along with the chills that he had last night they have to be certain before they would want to send him home. But on the other hand he is only 45 minutes away.... so in other words we have to wait and see the doctor... but it doesn't look good.
Owen has been good all day. His legs were cramping earlier - which can be from the Neulasta shot he received on Monday to boost his counts. But he has walked some laps on the floor, did some math homework, and is now playing battle ship with one of the Child-Life specialists. Earlier today there was a story teller who came room to room telling stories. She was really good and had Owen laughing and participating in the stories. One was the Three Little Pigs, but she sang it and Owen had parts he had to say and do and it was a little bit different and funny. Later tonight it sounds like a magician is coming for the kids, so at least he can have a little fun while we are here.
I'll let you know if anything changes or if the doc stops by.
Wednesday, March 15, 2006 11:00 AM
No news yet. Owen's fever broke around 11:30 last night. He seemed to be feeling okay. They were finally able to access his hickman around 1 am after putting TPA in his line to dissolve any blockage. They did this before and it worked then too. So I don't know if by where it is this time it just keeps clotting for some reason, but the blood came right out after that no issues at all.
Owen didn't wake up until 10:30. He is hovering around 100, and says his tummy doesn't feel good. He is coughing quite a bit today and sounds all stuffy. I am thinking it is this cold that caused him to spike a fever. His White blood count is only .3 so VERY low and getting a viral cold could cause him to spike up. But since he is low they have to bring us in and take cultures to make sure it is viral infection and not a bacterial one. The doctors have not made their rounds yet so I don't have their input yet. Looking at his blood tests though looks like he doesn't need a transfusion yet. His Hemocrit is 11 and they transfuse at 8, his plateles are 30 and they transfuse at 20. Which means if we do get released we will be back in a day or 2 to recheck his counts.
I'll keep you posted!
Oh and just to let you know he does still have his wits about him - "See Mom I told you I wasn't feeling good and it was a good thing I didn't go to school" Yes you are right O, I wouldn't have to ever doubt him if he didn't play the sick game!
Tuesday, March 14, 2006 5:42 PM CST
Another down day. Owen was up early at 6:00 and came down to the couch. He fell back asleep and slept until 11:00. He said he didn't feel good, his tummy was nausea and he was achy all over. When he stood up he was dizzy. I was thinking he was pulling the wool over Daddy's eyes because at 4:00 he was playing video games. I had to 'yell' at Daddy that Video Games are OFF limits if Owen does not go to school. No fun-stuff for sick boys. Chris went up to tell Owen he had to get off the games - that he just got yelled at by Mommy - Owen smirked at that... but he said he was getting off anyways because he was getting dizzy again.
When I got home after some errands - I went up to see Owen and he felt warm. Took his temp and it was 100.8 - OH NO!!! I waited 10 minutes and it was 101.0 Owen started crying that he didn't want to go the the hospital. I made him get out from under the covers of the bed and retook it again and it went back down to 100.8 So now I had him get out of bed and come downstairs, maybe a little bit of moving around will help.
Temp is now.... 101.4... calling the doctor
We are on the way to the Pediatric ER at University.
Aunt Shelley came out tonight to give the Big shot. We did get the one shot so that is so much nicer. We were quite the picture though the three of us reading and rechecking this $2500 shot. See it comes pre-dispensed in a 6mg needle, but Owen only needed 4mg. Now there is no lines on the medicine, so we were told to just waste 2mg and inject 4. Wow nothing like throwing money down the drain. So we analyzed and re-analyzed where we thought the 4 mg would be to and Chris finally did the duty of squirting out the waste. Owen was set with him nummy cream on his arm, but was quite nervous. I think Aunt Shelly was a little nervous too... injecting patients is one thing, your own nephew is a little different. Well finally it was over and everyone got to sigh, till the next time... I believe he will get this 2 more times in the coming months. Thankyou Aunt Shelly we sooo appreciate you doing this for us!!!!
He received a bunch of cards from his cub scouts yesterday. Thankyou so much - card from his friends are always a picker-upper. Thankyou Pam for bringing them by - you are a god-send with always bringing us homework or cards or just to say hello!
Owen is the bathroom right now so hopefully this may help with his tummy problems... can only hope! He will need to go back Wednesday for a blood count and probably a transfusion. But hopefully tomorrow will be school!
Now I am getting alot of questions about going to school because I keep saying his counts are low. I was very confused about all this at first too but I think I understand it now so I will try and explain it to all of you. This time when he drops to low counts it is NOT the same as after the transplant. His counts will return relatively fast so being low is not life threatening. Although he is more vulnerable to picking up colds or other common illnesses while in school, they are still just that a common illness. He would have to go to the hospital should he run a fever to determine that it IS indeed a fever caused by a normal illness and not a bacterial infection, which can be a pain and draining if he were constantly spiking fevers. But the fevers caused from bacterial infections are the ones the doctors are concerned about. These fevers would occur whether or not he is in or out of school. These infections are growing within him and not caused by exposure to others. His counts will teeter around the low side on and off for the next several months, so we just have to work with the school on IF there is a huge breakout of something or the majority of the school is sick then it may be worth staying home. Similarly he is not going to have to refrain from doing and fun activities, just again we need common sense - McDonalds (germ land) would definately not be a good idea! So make sense???
My wonderful and always uplifting friend Lori from Florida called yesterday. We talked for over 2 hours!!! Yes I did have to hide in the basement from my kids so I could have girl time. Thankyou for that Lori, I need to just chat about my stress, my problems, my fun, and just plain ol' girl stuff so thankyou thankyou for giving that to me!!!
Owen is out of the bathroom and feels 'a little' better. He is going to the shower now so I can change his hickman bandage. He did pause before going upstairs to check out America's Funniest Home Videos and let out quite a few big laughs so that looks promising!
Good night and as always thankyou for checking in....
We are home!!!
Started out a little shaky. Owen didn't feel well from the start of this morning. He slept late - till 9:00 which in the hospital is late considering all the people moving about. His stomach was real upset and he was on the verge of a fever 37.9 (100.2), 38.0 (100.4) is the magic number.
He got his nummy cream on his leg for his shot at 10:00. His blood count came back with him real low on plateles (8), transfusions are done at 20. So we got his shot at 10, which he took like a champ once again! Then they started his plateles, which took a little over an hour. He remained steady at 37.9 but they were concerned he would go higher. The doctor said it could be from the chemo all weekend or from the shot, but decided they would draw blood for cultures and send us home. We were to call if his temperature got worse. He had a really bad headache so they gave him tylenol for that and his low fever.
So we were on our way home at 2:15! Once Owen hit the fresh air he seemed to perk right up.
He has to go back on Wednesday for another blood draw and check his counts but he will probably need more blood by then. Tomorrow he has to get a shot to help boost his counts. The issue is they are noy sure which to give him. Last time we did Neulasta ($2500.00)which is a one time shot, the norm is Neupigen (sp?) ($500.00 ea) which is a daily shot for 7-10 days. When the nurse manager was checking on it on friday for our insurance - they were already closed. She called wegmans to check on coverage because Neulasta is not usually covered... they came back with Neulasta being covered except a 250 co-pay and Neupigen not being covered!!! I can't figure out insurance companies! So she was apoligizes for the big co-pay which to me sounded GREAT since last time our insurance would cover none of it! So anyways she is going to call insurance tomorrow to double verify everything. So we have to wait till then to know which one to give. If it is the one shot, Chris' sister (she is a nurse) will come out and give it to him - I don't trust myself! But if is is the 10 day shots - I will need to learn how to do it, I can't have Shelly running out everyday! He could have gotten the needle put into his leg with a casing over the top taped down so then I would just have to attach the med and 'push' it in... but Owen freaked over that, he would rather get poked everyday!
So we are home and thats what matters and so far things are going well. Except for blood checks and doctor checkups I believe Owen has a 2-3 week break before going in for more treatments but I will get the details on his couse this week.
So until tomorrow..... Oh and by the way... Go SU! Can you believe it! I didn't end up meeting Dad at the half they couldn't find anywhere to watch the game near by that wasn't packed to the hilt, so I just stayed and acted like a crazy person and didn't breath for the whole second half!!!!
Owen did great with his blood transfusion. It finished around midnight. It gave him a little bit of energy though, so I fell asleep and let him stay up to watch TV. He did crash before the end of his movie though. He has to have more blood again tonight - should be any time now. It did not bring him up as much as they were hoping.
They had large model trains set up in the play room here today. Owen got to 'drive' the trains through the controls. He thought this was awesome. One was remote control and had buttons for whistle, steam, forward, back etc. He was just bursting at the seems he loved doing this! There was only him and one other child in there so he got to take control quite a bit, and he even got a conductors cap!
I went home around 10:30 and Chris headed up. We had a great day at home, staying outside for the majority of it. It was gorgeous. Ty and Jake played on the Ark play set and in the sand (mud) box. Then they were riding thier cars in the driveway. I got alot done while they were playing. I scooped dog treasures in the yard - what fun, and then took down our Christmans lights! Yeah a little behind I would say! Whoops! At least I wasn't still turning them on still. After that we went for a walk in the field behind out house. I left with 2 little boys and returned with 2 mud balls! Tyler was freaking at first of all the mud on his shoes, but then Jake showed him how much FUN it was to JUMP in the bid mud piles and just cover yourself in mud!!!! Tyler was laughing in no time. Once we returned home they continued to play in the puddles around our driveway - stirring them up with sticks. Needless to say they were immediately thrown into the tub when we entered the house!!!! Tyler seems to be feeling fine... he has a runny nose (again), I might have Chris take him to the docs tomorrow anyways since Owen will be low on counts returning and just to be certain he doesn't have strep since he isn't going to complain of a sore throat.
Chris arrived home around 6 and I left to return for the night. Owen had an uneventful day... and was napping since 3:30 when Chris left at 5:00. Papa Fred, Grandma Lea, Nic, Kim and Sam were all here when I arrived visiting. I had to brind Owen some KFC because the hospital didn't ASK him what he wanted for dinner and they brought him something disgusting so all he had was bread!!!! But anyways they were headed up to Market street to watch the game. Since we had to cancel going to the Big East this year watching the championship on campus is the next best thing! I may sneak up for the second half if Owen stays good and doesn't mind.
Well the other game just ended and SU is on so I have to go.... GO SU!
I did post new pics of our day at home today.
It has been a long day so far. I called at 8:00 to see what time we needed to come in. Again they would not have a bed ready until later but for us to be there by 1:00 to get checked in, physical, blood draw etc.
So I took Jake off to school, got some needed things at the store and returned home. Owen did not get up until 10:00!! Of course for him and Jake were awake at 4am - 5:30 am with stomach aches. BOTH wanted mom to lay with them so I bounced back and forth between the two - it was loads of fun! We headed out a little before noon. Owen was in such luck his 'wife' Brooke is his nurse today! They were having some issues with other people on the floor having reactions to blood so it was a little bit before we started. Around 2 Owen got a blood draw and physical exam. His counts game back low -
WBC is 1.0
HGB is 6.0
PLT is 39
ANC 330
To give some context to these numbers, I'll try to give a quick explanation of them
- WBC is white cells: they make the inmuno system of a person, and a normal kid is 6.0-12.0
- ANC is neutrophiles: they are a subset of white cells and are the ones who fight infections and viruses. Normal amount is 4000-6000 and anything below 500 is a extremely risky.
- HGB is red cells: they carry oxigen in the blood. Normal is 11-14, below 8 requires a transfusion
- PLT is platelets: they cause coagulation of blood in case of wounds or any damage. Normal is 200-400 below 20 requires transfussion
Brooke was going to check if he would even beable to get his chemo with his counts so low. The doctor said due to the protocol he is on he is still suppose to get it regardless. Although this may mean he gets fevers and/or bacterial infections which may cause us to stay longer or have to return after discharge.
Bradley (one of Owen's roommates from last time) is here again. He was only in for the day. He needed blood and had just been here since this morning and they will be leaving around 7:00. But none the less him and Owen are teamed up and buddy/buddy again.
We did talk to another one of the doctors here about Owen's future... She is in agreement with following the 2year protocol for ALL testicular relapse. Her reasoning is that usually ALL respongs better to a longer, slower process of chemo VS the fast intense chemo treatment preceeding a transplant. Therefore she is theorizes that the transplant did cure the AML, but was just too quick for the ALL and therefore we should got this route. IF the AML were to show at any point in the 2 year we should go to transplant, and it is not like we have to find a donor, we have one readily available ANYTIME! The only issue comes IF Owen were to relapse. He would have to achieve remission for a 3rd time and then go to transplant. But this really is the same even if we go to transplant and he relapses after that we would still have to achieve remission for the 3rd time before any other treatment could be resummed. But one of the things I did like is it will NOT be our decision. The doctors will continue to ponder and discuss it and come to a consensus. They can not expect us to make this decision, because god forbid 'something' horrible happens we would not be able to live with ourselves wondering if it were because of the choice we made. I said 'GOOD' that has been MY fear. I don't want to be the one responsible for deciding the best treatment. Gosh if the doctors are debating it out - who am I???? I have only been a part-time Nurse/doctor for about 2 years now!!!
Well it is 7:10 and we are just going to our room. His first 3 hour drip of chemo is over and he should start his blood transfusion around 8, that will go until 11:00. Tomorrow or Sunday he will probably need a platelete transfusion.
Well I have to watch the game - GO SU!!! I don't know, not starting out good - I told you I shouldn't have watched it.........
P.S. - Tyler came home sick from school today..... oh I hope it is not Jakes Strep!!!! When will all these germs just go away!!!!
Last night Grandma Bonnie came over for dinner. Poor Owen had to 'wait' for dinner, Grandma almost got to witness him wither away before her very eyes! We had a nice time, and good dinner. Tonight Aunt Shelley, Uncle Pete and PJ came with Pizza for dinner. So Owen got to show off his XBox and the two of them were glued to the games. It was great seeing them play and Owen was just in the best of moods! Thankyou for dinner and a nice relaxing night!
Tomorrow I will call in the morning to see what time we should head up to the hospital. Owen has another inpatient weekend Friday - Sunday. If he isn't going to be starting until late afternoon again I hope to get him to school again for a while. Hopefully this weekend will be another quiet weekend at the hospital!
Sooooo how about those Orangemen!!! Can you believe it! I would have never put them past day one the way they have played lately. Fingers crossed they continue, but no matter what they are playing in the finals on Saturday - either for the championship or consolation game. I am debating on watching it or not. I have had to listen to it on the radio in bits and pieces, or what on-line updates for the last two games so I am scared to 'watch' and jinx them! Go SU!
I'll check in tomorrow and let you know how things are going at the hospital....
Take a moment to look at your life and appreciate your family and friends. Live life to its fullest and make sure you tell the people in your life how much they mean to you and give them that extra hug.
Today was Kelly's wake. My stomach was in knots about going but I knew I had to go. And I know it is the wrong way to think but I can't help but equate Owen and Kelly together and this made the unthinkable a reality. It was very sad. I did do better than I thought I would, I was crying and my heart is breaking for her husband and parents. There were pictures up of her life and with her kids, god you just have to appreciate life and hug everyone in your life and cherish every moment. Don't take anyone for granted it is all just to precious. When I got home, Chris left to go. He said he even broke down and started crying. He didn't know what to say, I don't think anyone does, but to know you care and reach out is all you can do. We will go to her funeral tomorrow as well and just try to be there for her family.
Take Care and remember to give your family an extra big hug and tell them you love them.
He got a very nice Get Well card from Great Grandma Fajnor in Canada. It had $50.00 Canadian in it!!! Thankyou Great Grandma! Well I had to burst his bubble and remind him that was only worth $1.00 American ( sorry guys you know I love to bust on you!) He said "yeah I know... but I can save it until we go to Canada".. Damn he's getting too smart I thought he would trade!
Have a good night and I will update tomorrow - thanks for checking on us!!!
Monday, March 6, 2006 6:11 AM CST
Hello - sorry for no update yesterday, things got a little hectic with Owen being discharged, the SU game and getting home and unpacking.
Owen started to not feel good Saturday night around 10pm. His stomach was upset and he thought he was going to throw up. They gave him 2 Zofrans for his stomach and he crashed almost immediately. He woke up Sunday morning still feeling lousy. He didn't want to eat or drink anything. I got him up and moving and in the shower. The shower helped a little bit to refresh him but his stomach was still off. So he took 2 more Zofrans. At 9:30 the nurse came to put the 'nummy' cream on his leg for his upcoming shot. At 10:30 we headed off to the treatment room to get his shot. He was so brave and just gritted down with his teeth and did great!!! The shots are very painful - right in the leg muscle, the nummy cream doesn't take all the pain away. Louisa told him a story of when she was little and had to have one of her toes cleaned and shots given for an infection. She said while they were working on her one foot she kicked them with her other foot! Well there was a smile!
Grandma Pat was there when we returned to our room. We tried as best we could to cheer him up but he was just down today. He was a little warm -37.5 (99.5), so we told him he had to 'hold steady' if he wanted to go home. 38 (100.4) is the magic number. He said he would try. I left at 11 to load up the car and walk up to the dome. It was an amazing crowd and support for Gerry McNamara. Unfortunately it didn't end well.... next year right?
Grandma and Owen got discharged at 1:50. They had to call me at the dome (yes it was very hard to hear!) to get permission to discharge since neither parent was at the hospital. The papers weren't ready when I left so I couldn't sign them so I had to give 'verbal' consent when it was time.
I headed to Grandma Pat after the game to get Owen. He was still pretty down and out. Mom said he had just layed all day and wasn't feeling great. We were going to go back to Papa Freds for Pizza but he just wanted to go home. So off we went. Jake and Tyler were at home with our sitter Courtney. Jake like Courtney - she plays with him! Courtney is home from College so Jake hasn't seen here too much for sitting, but she said it went well and he seemed to remember her.
It is amazing the stuff you bring to the hospital for 3 days! So off to unpacking and getting dinner ready. Owen went up to lay down in our room. He finally asked for something to eat - yeah!
I went up at 6:30 and Owen was actually very chatty and said he was feeling a lot better. Great! I went over to get his cup to get him more water and touched his head! Wow he was running a fever! It was 101.2! I immediately ran for the phone. The NP had told us that if fever came after the chemo this weekend it was VERY important to get to the hospital! Owen started crying he didn't want to go back. As I was waiting for the doctor to call back I was throwing stuff together in our suitcase ready to head back up. Chris called (he had gone to dads after the game) to say he was on his way home - I was in a panic! I can't talk - Owens running a fever - waiting for doctor to call - Click! Nothing like leaving him in a panic. The doc called and said it was OK to just give him Tylenol as long as he wasn't having any other issues. It was due to the shot he got before leaving the hospital. That will cause fevers. It is about mid-week that we need to be worried about the infection fevers the chemo will cause. WHEW - big sigh of relief.
So we'll let Owen sleep and see how he feels when he gets up.
Tomorrow and Wednesday he is taking the math ELA test so it would be nice to get into school for that last minute brush up for the test.
I'll update later to let you know how today goes.....
I went home today to have a special day with Tyler and Jake. Owen was busy surfing the net with his roommate Bradley so I wasn't missed. When I got home - Chris headed up. The boys should be good and tired for Chris. We had a dance-a-thon, including the limbo. We did lots of painting, and practicing our cutting with scissors - quite the mess though! We played action figures, and even made it outside to play for a good hour! They LOVE playiing outside - the cold doesn't bother them at all! I headed back up at 6:30 when Chris got home and I could hear the laughter coming from the room all the way down the hall! It sounds so good... I am glad Owen has been able to connect with someone here this time.
Now onto some very sad news... our friend Kelly (Green) Lipiska passed away last night. Kelly has been battlling AML leukemia since this summer. She has had a hard time, not due to the leukemia but due to her body tolerating the chemo, blood transfusion etc. She had very bad reactions and they had to be careful with everything. Kelly was at Roswell in Buffalo and was going to have a transplant on March 3rd. Her heart had again suffered and dropped to 50percent so they had to stop plans of transplant until she got stronger. Then a bad infection that she beat once while in Syracuse re-surfaced and she was unable to fight it anyone. PLEASE hold the Lipiska family in your prayers. I can not imagine the pain they are going through right now. Our thoughts are with Tom, and their 2 beautiful young children Thomas and Miranda, as well as Roberta and Marty Green who have lost their daughter. I don't even know what to say right now... it is devasting and heart breaking.... I am so sorry for all their pain. Please know that I am thinking of you all and give you all the strenght I can!!!!!
Friday, March 3, 2006 4:25 PM CST
Slow start on our first day. I called t 8am and they did not have a room for Owen. There was suppost to be a couple of discharges after the doctors rounds in the mrning and they would call us between 9 and 10 to let us know when to come up. At 10:45 we received the all to come up and go to the day room, which is just the big area the families can hand out in and watch tv, eat play games whatever. We arrrived at 12:15 and plopped all our luggage and supplies in the corner and Owen started playing XBox. At 2:15 our nurse came over to introduce herself, she did not realize we had arrived. Now I realize we did not 'sign in' when we arrived but it was KNOWN that we were there. But I will make sure I do it officially next time. We went to the treatment room to get Owen's blood drawn and checkup. NO issues with the hickman line today! Must be it just neded a few times to get all the issues out.
Our room was ready at 4:15, so in we went and unpacked. The chemo was not hung until 4:45! So we hurried up and waited today. Another thing I learned for next week. We did not need to sit here all day, nothing was even done until almost 5! We are in room 7612 and the phone number is 464-3690. It will also be posted at the bottom of the web page.
So nothing really to report - we are just getting started. Owen is in good spirits. He was sad this morning and getting himself worked up. He did not want to come. He gets really nervous about everything - going back to school, going to the hospital, going out to eat - will people look at him. Definatey not the innocent little 6 six old that went through this lst time. But now that we are here is is fine. He has two other boys in his room and it looks like they are Video junkies too. One also brought his own PS2 and games just like Owen. They have PS2, nintendo, XBox etc here for the kids but Owen likes to play his own games, and you can't load your own in the devices - you only have the games that are here - the devices are locked up with only holes to reach your hands in for changing games etc. You know there are people out there who steal anything not locked down and ruins it for others!!!
Owen had eye drops, the chemo may cause infections in his eyes, and has had Zofran so now it is just a 3 hour drip.
Till tomorrow there is nothing else tonight - hoping for a quiet night!
The Dora show was awesome and we really enjoyed that. Tyler and Jake were totally into the show and yelling and participating the whole time. Good job guys! As for Grandma and I - it was the trip from Hell (except for the show we enjoyed that too). We left at 1:20 and arrived back home at 8:30!!! We drove the whole way to Elmira in a blizzard. The majority of the trip was driven at 30-35 mph. A couple of spots we were able to top out at 45, but not too many! Then have I ever said how much I HATE internet directions! The directions had us go down Triphammer road by the ithaca mall to route 13 instead of staying on 34, so that road was even worse. Then after getting off of 13 and on to 17 it sent us in the wrong direction - we ended up in Big Flat Bush or something like that. We stopped at a gas station and we had to basically back track to Elmira. So we arrived at the show at 4, by the time we got in we missed the first 10 minutes of the show. Then the 'great' seats I purchased. We don't like to sit on the floor as it can be hard to see... so I bought the tickets on the side, but low. Well we got to our section and the usher told us they closed it due to not being able to see the stage well - it was too close and most of the action took place farther back on stage and you couldn't see. He had us move over one section and up. Well this was no better... if they were not singing up in the front of the stage you couldn't see. We could see a bunch of empty seats farther over so I asked the usher if we could move and he said we could - anywhere no one was sitting. So we moved basically to the farthest end of the ice rink but straight view of the stage. Another family there said they had the same section as us before so how nice is that you pay the extra money for the 'good' seats and get robbed! We could see the show great now just farther away, but really enjoyed it!!!
Now end of show... back to the parking garage... 45 minutes late we made it out of the garage. Then the long (but much shorter) drive home. Now that we knew how to get home and the weather was nice and plows had been out the ride home was actually only a little over an hour. I told Tyler and Jake I will remind them forever how I spent 7 hours to take them to a concert!!!! Their smiles made it all worth it.
Tomorrow I will call the hospital in the morning. They said just to call to make sure Owen's room is ready but the goal is to have us in and set up by 9:00 to get the chemo started. They will give him chemo starting every 12 hours (so 9am, 9pm, 9am, 9pm) with each infusion taking 3 hours total. Hopefully it will be a smooth weekend. I am 'hoping' to make it to the last SU game on Sunday. It starts at noon and we will probably not be released by then, so Grandma Pat will come stay with Owen while I walk up to the game.
Owen received some books in the mail today from his cousins in Oregon (Lisa, Tilly, Brock, McKinna, and Keeley) Thankyou Thankyou - these will help pass the time this weekend. Looks like some good mystery stories.
Thanks for checking and I'll let you know how we are making out tomorrow...
He started out not feeling well, his stomach was off this morning. He took a Zofran and went back to sleep. When he woke up later he got up and was off to school! He got there just before lunch... pretty good timing eh? After lunch he went to science, then math and then he was ready to come home. I will take it though. Any is better than none and hopefully he will work his way back up to full days. We have a lot of hurdles and treatments to get through so we will take the good with the bad.
He did find out though his 100 on his math was really 14/15 so not quite... but I am still thrilled with that. This was on the ELA sample test. He will take the 'real' test next week.
Tomorrow he is 'planning' on going to school in the morning to get some reading class in. Papa Fred will be taking care of Owen later in the afternoon as I am having a special day with Tyler and Jake. I had bought tickets to Dora the Explorer back the beginning of January. I thought they would have to miss it, or to try and find someone else to take them (it is in Elmira). But luckily it falls before Owen goes inpatient, and I am able to go. My boss was wonderful in letting me take 'more' time off. I am so lucky to have this support. I want to still be there for them as much as I can, because it is not just Owen who has Cancer - the whole family is affected.
I just heard screaming from up in my bedroom. I went up and it was Tyler yelling because Owen was torturing him... yes things are settling down and becoming more normal! Wow how wonderful that was to see! Owen was just beaming and laughing, 'he wasn't doing anything!' with the smile of a very guilty child!!!!
Till tomorrow... and to more good days!
We had been talking before I left for work and I told her I MADE Owen get out of bed last night and come downstairs. I think part of his not feeling good and hurting all over can be because of laying in bed for 4 days. He cried and cried once I got him downstairs saying he hurt all over. He finally settled down and was even joking around. Nicole came over to visit and brought 'Dunkin' - her Lapso Opso (sp?). Poor Dunkin the kids abuse him when he comes. They just can't figure out what he is compared to the horses they have for dogs. Owen was happy and loving playing with Dunkin. He even ate dinner at the table. So he was downstairs about 2 hours.
Back to today - YEAH YEAH YEAH - did I say that yet? After his pain medicine he headed off to Grandmas house. He started feeling better and she told him she thought he should go to school for awhile. He said it would be too noisy for him to go at lunch time. He also said it 'freaked' him out a little the way the kids hover around him. He knows they are happy to see him, but it is 'freaky'. I called the school to let Nurse Jane know he was on his way, and she would relay the message and let the teachers know Owen needed space. So they agreed after lunch she would bring him, and her and Jake would hang out to make sure he was okay and he could just stay for an hour or so. Well it went great! He was there for Math and got 100 on his math assessment test they took! He is just beaming over that - he is the ONLY one who got a 100! After Math was specials so he decided that was too much and was ready to leave. He called me when they got home and was all bubbly and has decided he CAN do school. He did immediately fall asleep after that.. so I think I little bit at a time is good, slowly wean him back in. But he went! Yeah! Jake was in his glory hanging out and playing with a bag full of dinosaurs Mr. Jorgenson found for him! How excited was he. Mom said he was just a huge chatter box.
So tomorrow the plan is to let him sleep, Mom will take Jake to school, then come home get Owen ready and bring him to school. So heres to another day at school! Lets hope he keeps this up. He will be so much happier, and feeling alot better if he has an outlet. I don't doubt that he was really hurting the first few days, but then I think he gets in a rut... so we have to keep him from falling down the hole!
Thanks for checking in - and for the record just one more YEAH!!!!
I received an email back from Dr. Horan. After consulting with a couple of doctors he seems to be in agreement with Dr. Souid in Syracuse that we should hold off doing the transplant. The reasoning is that MAYBE only the ALL survived the transplant and since the relapse was testicular (no detecctable marrow involvement) that it may be curable with relapsed ALL chemotherapy. When ALL relapses in the marrow it is more difficult to cure with standard chemotherapy so their recommendations to go with the chemo is based on it being testicular not in the bone marrow. If the AML should reappear then transplant would be the path to take. If we go the chemotherapy route and Owen suffers another relapse, a transplant could be an option, but each time acute leukemias relapse they are harder to get under control. If the leukemia relapses and another remission can't be achieved, transplant would probably not work either. Owen would be at higher risk for transplant related complications if the transplant is performed when his disease is in a 3rd rather than a 2nd remission.
So all that said - I AM SO CONFUSED AND SCARED TO MAKE THIS DECISION!!!!!!!
I guess we keep plugging along and see how things progress and pray when the time comes the decision seems to come logically.
No wonder I have been having headaches - I think they are called TENSION HEADACHES!
Till tomorrow....
Other than that it was a quiet day. I spent most of the day laying with him, trying to get this headache out of my system!!!!
Till tomorrow... thanks for checking in!
Last night he woke me up at 12:30 - he needed some Tylenol and water. Then at 1:30 because he was feeling a little better and needed to eat! Now he wakes me up by YELLING from his room, as he needs help getting in and out of bed due to being sore. I think I am really only partially sleeping the whole night listening for that yell :-)
But my every charming little boy told me when I brought him his food "If there was a parenting test you would get an A " How sweet is he! Course I know he is part Politician so you never know what he's up to with his compliments! LOL
My headache returned again this morning, not quite as bad, but bad enough, and I am still having some cold symptoms. My whole goal is to get rested and over this by Friday. I will not be able to go into the hospital with Owen if I am still having cold symptoms, I would be a risk for the kids on the floor who have weak immune symptoms. That would be horrible (for me and Owen).
We received a very nice letter and card today from Nancy (Jim) Robinson. She was one of the big organizers in our benefit and is just wonderful. Thankyou for reaching out to us, everybodies support is something we will always appreciate!
Now speaking of benefits - I have been approached by a few people on whether we need one. The answer is NO! The teachers/ school and all of our 'Super' friends did such an AWESOME job last time that we have ALOT left in the Owen Fund and we should be fine this time. Thankyou so much for thinking of us (again) but we are fine.
We ate Lily's pasta for dinner tonight. It worked great with my headache all day I did not even want to think about cooking. It was absolutely delicious! Thankyou again. Owen said it was really-really good. He is eating in my bed so I hope he is careful. He handed me his EMPTY bowl and kind of whimpered I'm all done. I looked at the bowl and said well I guess so unless you were going to lick it. Again a little smile! Mommy you know what I mean...
So not a bad day just a quiet day and alot of resting. Hopefully he will start to perk up a little more tomorrow.
As always thanks for checking on us!
pediatric surgery floor. They told us we had to go to registration first and then to 5C for his checkup first. He was not scheduled for surgery until 1:30! Are you Kidding! I have a starving child here! Yes 5C first they have to do a blood checkup and physical to make sure he is okay for having the two procedures (Bone Marrow Aspiration, Spinal Tap, and then chemo in the spine).
Lily one of the women from Owens 'Make A Wish' team who made his disney trip a reality came up to visit. She made us a huge pasta dinner! Thankyou Thankyou Thankyou - that was so sweet and very much appreciated! Lily, Owen and I played a fishing game and then Cooties game before he had to go in for his appointment. It was wonderful seeing Lily and she promised to visit again. It was a great pick me up for Owen! Lily is also pregnant and due the end of May so we are hoping for Owens Bday - the 22nd!
They had trouble again accessing Owens line for blood. The nurse finally got Owen to relax and boom out flowed the blood! Yeah! Our doctor was not in so we were seeing a Nurse Practician ( i think she is actually more than that). She examined Owen and discussed the plan from where we go from here. I told her about the doctors having conflicting views on which way to go from here. She said it was too bad we could not talk to Dr. Horan - our original BM doctor. I said - already did! And told her he recommended the BMT, but would discuss it with other doctors. She said she would go with Dr. Horan he was the smartest doctor she knew! So that makes me feel so much better. I have already said how much we miss and liked him.
Our treatment schedule has changed a little - they are swapping Block 3 and Block 2 due to Owen having a testicular relapse. So next Friday and Saturday (Mar 3&4) he will go inpatient. Owen will receive Cytarabine (ARAC), he will get 4 doses all together, every 12 hours he will get some infused over 3 hours. This will again be repeated the following week - March 10 & 11. We can expect Owen's counts to drop, nausea, vomiting, and fevers. He also can get conjuncivitus in the eyes and will be taking drops to help prevent this. On Sunday morning he will receive L-asparaginase (LASP) and watched for an hour, and then released. He will also get Nuprigen following the second weekend which will help to boost his counts back up. This is that VERY expensive shot ($2500), he got 3 times his first round with leukemia after chemo, and was not covered because it was too new. However this time the majority should be covered by insurance since it is now FDA approved.
So back to the waiting room to wait to go downstairs for the procedures. Owen is crying again and begging for just 1 cracker. I felt sooooo bad for him. We did get in a little bit ahead of schedule (1:00). Everything went well, except we have no results, the Nurse (who did these procedures as well) does not preview any slides so we will have to wait until mid next week for the results. As soon as Owen was awake, Chris and I went back. He had to wait another 1/2 hour before he
could move due to the spinal tap. As soon as he saw us he asked for a hotdog with mustard and ketchup to hold him over and then he wanted to go to Friendly's for lunch. The nurse watching him said she did not recommend something as heavy as a
hotdog following Anesthesia as he could get sick. I told Owen maybe she was right and he should have a slush or something. He immediately broke into tears that he was hungry and didn't want a slush. I looked at Chris and said go get him that hotdog. He returned and Owen's eyes lit up the drool was practically flowing from his mouth. The nurse pulled the curtain
around us in the recovery section which is a big open area. She didn't want anyone to know he was eating a hotdog. She said she didn't care if we broke the rules as long as we understood he would probably get sick. We had to slow Owen down so he
didn't inhale the hotdog too fast, then he ate a bag of Dorito's. AHHHHH - much better. The nurse was cracking up - she never saw anything like it. Owen was fine and we left, no problems. We did stop at Friendly's on the way home where he
proceeded to eat 5 chicken fingers and some fries! Finally he was full and wanted to go home and lay down. I don't think we were in the car 5 minutes and he was out.
He is laying down upstairs now, his back is bothering him, so he just wants to lay flat. He will probably get his headaches back - both from the spinal tap and that is also a withdrawl symptom from the steroids.
So I guess all in all it was a good day. Hopefully he will feel a little better tomorrow and FINGERS CROSSED will return to school for Monday - Thursday. Even if he makes it part of the day I think it is important mentally and education wise to get
there.
Till tomorrow - thanks for checking in!
So unfortunately that messed up his tutoring today - SORRY Mrs. Vasquez!!! Mom was out early to grab Owen, she thought they could get some breakfast first. So off they went. They had a BIG breakfast and then they were off. Well things didn't work out so well... the museum was SOOO croweded due to the schools being off. There were lines to do everything. Even once he got in Wegmans they basically rush you thru and out so the next person can get in. They kind of wondered lost since it was so crowded and not easy to get to anything. Finally they decided they had enough and headed out. Originally they were going to go to Bugaboo Creek for lunch - Owens favorite restaurant in Rochester, but since it was only a couple of hours past their big breakfast they decided it wasn't worth it. Owen was starting to get a stomach ache, so Grandma gave him some Zofran and they headed towards home. By the time they hit the outlet mall he was feeling better so they stopped at KB toys. I had given Owen $20 for the day for food, the museum etc. but since Grandma treated he had money to burn!!! So he bought a couple of new spidermans and I got $2 back! HMMMM - guess it is okay. He bought a new stuffed spiderman and he needed one anyways for when we go for the BMT, only new, clean stuffed toys are allowed due to his immune system. We'll have to hide it though to protect it until then!
Dr. Horan (the original doc in rochester) got all my info today and jumped right on getting in out to other docs. The one doctor he is really looking to hear from is out of the office for a week but he will let me know as soon as he does. We have time so that doesn't matter. But how great is that, by 8:30 this morning we had emailed back and forth several times! Thankyou Thankyou for taking an interest in this Dr. Horan!
Owen was craving stuffing tonight and of course we had none left from dinner last night. He was sobbing.... so into the car I went and ran to the foot of the lake and luckily they had some. Brought it home, and when I brought him his bowl of stuffing his eyes lit up and a big smile. 'Thankyou Mommy - you are the best Mommy ever!' Now doesn't that make it all worth it.
So I am setting the alarm for 2:30, Owen said he definately wants to eat before his cut off time. So I'll get up and make sure he gets his food in. It will still be a long morning though!
We will get initial results of the Bone Marrow test tomorrow but the more detailed results will not be for a few days. Please pray that all remains clean!!
Till tomorrow.....
I did call the doctors office today to try and change his Friday appt. but I don't think I will have any luck. So Owen will need to eat his last meal like 8 hours before his 11:45 appt. So that would be 3:45am - have to set my alarm that night & make sure he gets his food or we will have a very grumpy boy. Probably will anyways because he would have eaten 3 more meals in that 8 hour time at least! He finishes his steroids tomorrow, but it will take a few days to get out of his system. He can also experience withdrawl symptoms from stopping them also. Meaning he may become very emotional. Better practice on my patience!
Owen had his friend Thomas come over yesterday around 2 and he stayed until 8. They had alot of fun, and Owen was in his glory having 'fun' again. He was very tired after Thomas left and became very sad and crying because he couldn't think of what he wanted to do with me.... I finally convinced him we would lay down and watch spiderman. He wanted to do something 'Spiderman', but not a board game, not action figures, not dress up, not a puzzle, not coloring, not a video game... but he didn't know what!!! Once we layed down I think he was asleep in 10 minutes. He woke up at 5am, hungry and legs cramping. So I got him medicine and food ( he wanted spagetti - thankfully we had leftovers ). He ate first then took his medicine, then had some chicken nuggets. Then he crashed again. I was awake then, no point in going back to bed my alarm would go off soon.
I am on the mend. I stayed home yesterday. My sinus infection was now dropping into my checkbones as well and I just plain ol' hurt. I slept alot of the day. I 'borrowed' some of Owens Tylenol with Codeine to knock me out, once in the morning and once in the afternoon. Today I felt alot better! Feels mostly like a cold now, with a 'dull' headache.
I got in touch with Owens original Bone Marrow Transplant doctor in Rochester. He had transferred to Atlanta Georgia. I wanted to pass all the info onto him and get his input. He was wonderful and called me at home and we went thru the whole relapse, treatment options etc. He is inclined to think we should repeat the transplant. He believes the risk of a second transplant is not very high due to the length of time Owen was in remission. He also feels with the complication free time Owen experienced after transplant makes him a low risk for repeating. Also due to the mixed leukemia Owen had there can be no clear analysis to say it is not there. He asked me to send him all of the statistics on Owens original diagnosis to refresh his memory on the exact makeup of the percentage and types of the mixture. There are actually various types of cells composed within the mixture. He will then review this and circulate this with various experts he is in contact with and get their input. He doesn't know that we will get any definate answers but just more opinions from other sources due to no experts in Owens leukemia. However the more doctors we are in contact with the more information we can have at our fingers to help with our decision. How wonderful is he!!!!! We miss him alot, we were sad to see him go. He is patient and very calming in the way he talks with you. I have dug out all the information on the original diagnosis, yes I was organized and kept all this in one place so I didn't have to 'remember where I put that stuff'!!! So hopefully I will get some more input to our situation.
I seem to do nothing but research, research, research. But as long as this ultimately comes down to our decision I want to have as much information as I can.
Thanks for checking in!!!!!
I have a sinus infection - went to the docs today and got an antibiotic. Hopefully it works quick because I am in pain! I left work at 3:00, I had enough of trying to fight it and was just ready to lay down before Chris left for the SU game ( i was definately not up for going ) and I had all the boys. Mom called and volunteered to keep the little two for me. Thankyou, that will definately help for a quiet night! What would I do with out my Mom - always there for me!!!!
Owen and I are watching the SU game on TV. So I am not sure if my headache is worse because of the infection or from frustration! I told Owen that sometimes the team will meet kids with Cancer and maybe I could check on him getting to do this. He was all excited. I said now I know you go to a lot of games with me, but you mostly eat and watch the cheerleaders and the dancing girls. So tell me what are some of the players names? Ummm - Jimmy Johnson? Oh boy - we better brush up before we go....
So heres to a quiet night and hopefully a better day (for me) tomorrow. Owen is going to have a friend over tomorrow I think so he is all excited.
He is laying down now - says his back hurts a little. As he lays there he has coughed a few times... oh please don't let him get my bug!!!!
Talk to you then - as always thanks for checking in!
We have thawed out from the walk to the dome! At least we froze for a WIN! It was very nasty driving home. We didn't get home until almost 1:00am! It ended up being a long night... it was one of those sterioid nights. I had barely fallen asleep when Owen woke up starving. He wanted something 'warm' to eat. See I have gotten smart and make him sandwiches before bed so if he wakes up he can just go get a sandwich... but no.. he wanted pizza. So I warmed up the last piece of pizza for him. Back to sleep... 3:00.. Owen is still hungry.. he wants Chicken nuggets. So off to make chicken nuggets. I know you are all thinking I am crazy, but trust me talk to any parent with cancer child on steroids, 3am is NOT a time to reason with them! You just do it!!! 5am he crawls in bed with me, with a tummy ache, so I got him some Zofran and let him sleep with us. I was up at 7:30, now I have to ask myself why I feel so exhausted... i don't know if I ever really sleep! LOL
Owen woke up at 9:00, he still had a tummy ache, he was quite upset it hurt really bad. He tried to go to the bathroom but it hurt too bad. So I made him some more of the constipation medicine drink. He then ate breakfast and felt a little better. After resting about an hour, he was feeling great. He did some math homework and then played some Xbox with Daddy and Papa W. Good news Mr. J - you are ALOT better than Papa - he stinks!
Owen, Jake and I then headed out to Wegmans for 'a few' groceries. I got real groceries last weekend. Well trust me - don't bring a kid on steroids to the grocery store. $200.00 later we left, and that is no meat, and only some laundry detergent and paper products. Hopefully this supply will last a little while....
Owen played a little more Xbox when we got home. You can tell he is feeling much better these days the video games are starting to come into focus again. He just did some more math and is now in the tub soaking. I got some of those soaking salts for babies with diaper rash. Hopefully this will help his sore butt a bit. He said it feels like knives when he tries to go to the bathroom. OUCH! After that he has one more math sheet to go and he is free to have a friend come over after his doc appointment tomorrow.
He pointed out to me today though that yesterday he actually was working on math when he was playing XBox. I asked how he thought that. Well.. I had to figure out how much I was beating Mr. J by! Okay I guess that counts!
So we are 2 for 2 on pretty good days. Hopefully it stays this way and his treatment from last week doesn't catch up and knock him down again, it is so wonderful seeing him so up. This Friday he does have another spinal tap as well as his chemo though. But hopefully that is only a couple of days of headaches.
As for me I think I am off to the docs tomorrow. I bought some real sinus medicine today instead of cold medicine. It has helped a little.. but if I bend over it feels like my head is about to explode. To put on shoes is a major task! If I cough it feels like my jaw is going to rip out. So I think I definately have a sinus infection. I'll see how I feel tomorrow.
I have posted some new pics... check out the round face! He won't let me take pictures of his budda belly.
He started out a little constipated. He has medicine he mixes with juice to help, but he was in pain today. His butt is getting a little infected and I have been applying diaper rash. Finally he decided he would eat AGAIN, and that seemed to do the trick. He didn't go to the bathroom, but his tummy felt better.
Then one of his most favorite playmates in the whole wide world came to play.... Mr. Jorgenson - one of his multi-age teachers. See Mr. Jorgenson is really just a kid in a grown up body. They played X-box all day. Owen taught him how to play Call of Duty. Its a war game... not one of my favorite games for him to play... but they had a great time. Owen said Mr. J started out slow, but he eventually caught on.. good job Mr J! Daddy came home from the store and they played 3 player for a few hours. I was upstairs laying down, with the little two palying in my room. I am still having awful sinus headaches. But I could here the yells, and laughter going on the whole time.
When Mr. J left, Owen came up to get me. He wanted to go to his cousin Sam's sweet 16 birthday party. So off me and him went. I think he got quite the eduacation from the girls there. They were 'pole' dancing in the basement. Owen was all smiles. I left after 1 1/2 hours, Owen stayed and then came home with Kim, she was babysitting while Chris and I go to the SU game. We are going to dinner first, then going to FREEZE our butts off walking to the dome!
Here to many more great days!
Chris said it was pretty nasty driving to Syracuse. They were being blown all over the road. Other than that it was a good trip. Owen got a headache coming home and went and layed down for awhile when he got home. It didn't seem to help so then he ATE, and that was the magic trick. He hadn't eaten his 10th meal of the day yet! You will not believe how round his face is! And talk about budda bellies! Other than that he has felt good all day. Keep your fingers crossed we can have some good days here.
I got the results back from the blood work yesterday. Owen is back to normal!!! I was like 'WHAT? those numbers are normal - he had bottomed out last week!' The nurse said sometimes the chemo can knock them down quick but they can bounce back. Plus the fact that Owen had been fighting a sinus infection and cough could have attributed to the fast drop. So he is healthy enough to go to school just in time for a week off!!!!
As far as the opinion of Dr. Souid, I am thinking and re-thinking and writing down my thoughts and questions. Then I want to go over them with our doctor at Syracuse, our Rochester Doctor and Dr. Souid. I want to make sure we are getting all the facts and thoughts together. To me.. I thought the bone marrow WAS a success, and that there was some dormant cells in the testicle that the BMT did not take care of. From what Dr. Souid said - he doesn't feel that is the case. So I guess that is first and foremost. I need to have more of a feeling about this relapse. There is plenty of time to get our thoughts together and weigh our options though.
I am feeling like I am getting sick... I have had a sinus headache all day, and having been coughing for a few. I hope not.. but at least I feel better that Owen has counts now!
Have a good night and I will check in tomorrow!
While we were waiting for the solution to do its magic, they gave Owen his Aspariginese Chemo shots in his legs. Dr. Souid examined Owen. He said the pain in Owens legs in from the Vincristine Chemo he gets weekly. It can cause leg and or jaw pain. He also through a curve ball to me... HIS opinion is that we should NOT do the transplant! He feels the fact that Owen has only relapsed with the ALL leukemia that the normal 2 year protocol would be the way to go. He feels the transplant did the job in getting rid of the AML leukemia but failed with handling the ALL. Therefore we should try the standard chemo route with that. I asked about the leukemia 'hiding' in his testicle and the fact that his marrow was clean means the transplant did indeed work, it was just these cells that hid in an area not affected by the transplant. He said no if the leukemia was in his testicle it WAS through out his body. They may not have gotten deep enough into his marrow to get to where it was but it had to be there if it was in his testicle. he will be going to an Onocologist conference and will be bringing up Owens situation for other doctors to give there input too and will let me know. He said he would be willing to talk with Dr. Mullen in Rochester to voice his opinion and discuss what we should do. Ultimately the decision is ours and there is no right or wrong answer. UGHHHH! Just when I thought we were comfortable with going with the transplant I get this! We still have several months to ponder and go over with the doctors so who knows!
A child psychologist came in to talk with us. She went through our history and what we have been through and where we are today. We discussed our emotions, our anger, our fear.... We talked about Owens depression and his feeling he did something wrong and God was punishing him. It felt good talking and she was great with Owen. I am going to make another appointment with her for Owen to talk with her alone next week. I think an 'outside' person giving Owen some direction and help might also help him sort through some of the feelings he is having this time.
Owen was in a great mood when we left. He spent the rest of the afternoon at Grandma Pats. He got a little grumpy when we got home because I was leaving to go to Tylers Gym show at school. He wanted me to stay home and that it wasn't fair that he couldn't go. Needless to say I went, he has to understand that he has to share me and it is important for me to be with Tyler too.
Tylers Gym show was soooooo cute! First he ran several different types of relays. He ran, galloped, side slides, skipped (forward and backwards), did the bear crawl and crab walk. He did his best and knew exactly what to do. He waited very patiently to be 'tagged' to start his turn. He is AWESOME at the bear crawl, he scooted right along. Skipping he does his best and we were just roaring with laughter. He lifts his legs up real high and kind of does a little hoop. It was adorable! At the end the whole first grade did 'Mousercise' He was right into it, following as best as he could and watching the others to know exactly what he was doing. What a great night. He was very proud. Grandma Lea, Nic, Kim and Sam all came to watch too.
I have to call tomorrow to get Owens blood counts and hopefully see his counts are coming back up....
So till tomorrow have a great night!
Owen started the day out with radiation. He slept the whole way there and back, he was complaining of a headache and backache. Once he got home and ate lunch he seemed to be feeling better. I called home to see if he felt well enough to go to school. He said he didn't know. I asked if he wanted to go.. he didn't know. I think he was nervous. Mom said he hadn't been complaining of not feeling good but was just quiet. So I talked him into going... I told him if he got there and didn't feel well they could turn right around and come home.
So off they went. Mom said he was quiet at first but the closer they got to school she could see the excitement and he started talking. School was a huge hit! The kids were all super with watching their contact with him. He wore his mask to keep germs away and just had a great time! What a difference on the way home. Mom said he didn't stop talking and was laughing and telling stories - just like the ol' Owen!!! I talked to him when he got home and he was just bubbling over! Oh it was soooo great to hear the happiness in his voice!
I did get an email from the Rochester doctor as I had some questions on his suppressed immune system. He said he is not as immune suppressed as he is after Transplant. This chemo will knock him down but his counts will be coming back a little bit each day. We do need to be cautious and not let him have contact with people who are sick or have infectious diseases. He can still have fresh fruit and vegetables they just have to be washed really well. So that made me feel a little better about letting him out to school. I think something like this when he is low on counts is just what he needs. So we will have to schedule some more visits to the school... it was just the ticket he needed.
He is still in a great mood! He got all sorts of great stuff from everyone. A great BIG bag of goodies from his teachers... liquid goo, doodle drawing board, bubbles, felt coloring, candy... cool stuff! He got $$$ and candy from Papa Fred, Grandma Lea, and Grandma Pat. Sean Decker stopped by with a 3D - felt model motorcycle kit. Wow thankyou everyone - you are just great and a true uplifter for Owen!!!!
My hubby surprised me with a wonderful Valentines dinner. Steak, shrimp and Lobster! Now that is the way to my heart.. forget the jewelry.. I want Lobster! I got a little nervous though... Jake liked it. That is not a good thing to have your kids like lobster...but after his third bite he decided it was 'disgusting' so the rest was mine.. whew!
Thankyou everyone for all your uplifting words in the guestbook.. we will have our bad days but to see the smile on Owen's face today was priceless!
Owen has been going through alot of depressed times the last few days. I told you about his crying the other day, and he had another one last night and was real mopey today. When I thought we were going to settle down and watch a movie after I updated the site last night, Owen had disappeared. We heard him in his room crying. Chris went up and listened outside his door. He was praying to God - asking him why he was punishing him and what he did wrong. He didn't want to be sick he just wanted to be a little boy! I brought Owen down and he was just sobbing that he wanted to be with his friends and go to school and be normal. Oh how my heart is breaking!!!! I told him that God has really big plans for him - just like Simon Birch (if you have not seen this movie it is a must see!). He said but I already passed the test once - why do I have to do it again!? Oh Owen you are sooo right! You shouldn't have to. I told him he made it look so easy the first time that God needed to test him again because his plans were very BIG for him and needed to make sure Owen was as much of a Super Hero as he thought. This seemed to satisfy him a little bit. But you can just see it in his actions and face.
Chris said he was very quiet all day and just mopey. He is just plan ol' depressed and I don't blame him one bit. I told him MAYBE - and its a BIG MAYBE. If he is feeling okay when he gets home from radiation tomorrow - that possibly he could go to school for a little bit of the valentine party. He would have to wear his mask while at school. This perked him up a little and he agreed that he would wear the mask he didn't care.
We actually did quite a bit of homework tonight. I did the writing but Owen worked along and enjoyed the story for this week. It is about kids starting businesses. One kid created greeting cards and made $3000 in a year. He donated 10 percent to charity. Owen said he would donate 50 percent to charity because he would still have alot of money and that would be the right thing to do!! Awesome - although Owen doesn't part with his money too easily unless it is for buying things. But it is the thought that counts!!!!
Hopefully tomorrow will be a brighter day! Thanks for checking in with us we appreciate everyones support!
Later Aunt Shelley came with doughnuts and hershey kisses! Thankyou again! Owen has not been on much of a sweet kick lately but I am sure the rest of us will polish it all off - so my jeans may not be so thankful!
Then Grandma Bonnie rolled in with a slushy maker, an iZ music guy, 2 new movies and t-shirts from Texas! iZ is really cool, he makes up his own words to music when you connect him to a radio, or just sings songs with out it. We of course had to try the slushy maker... one tip though... alcohol does not freeze... so make the non-alcoholic slushy and spruce them up later ( if you want... ). Thankyou Thankyou!
We had a big ham dinner and Grandma Bonnie stayed. It was a nice family day for all Owen felt good most of the day. A few belly aches here and there and he would go lay down. He took one nap.
Owen also got mail yesterday from Uncle John and Aunt Claudia in B.C. Canada. They sent Owen Great Grandpa Faynors Czech medals! Wow, how special is that! Thankyou!
Now we are ready for some down time and put a movie and relax. Owen will be ready to get back to the grind this week. I think now that he KNOWS he has to stay home, he is already going stir crazy. He cried when I left for the store, because he wanted to go and couldn't. So he will be ready for some interaction this week Mrs Vasquez and Mrs Smith!
Have a good night and I will check in tomorrow!
He got quite sad today because it was suppose to be his special day with Aunt Anna - to go to church and then to the hockey game. He was crying and wanting to go. He started crying how he didn't WANT to have leukemia and why did all this bad stuff happen to him. It was really upsetting and we were both flowing with tears. He called Aunt Anna and they will reschedule a special day again when he is able to.
We read all his wonderful letters that his classmates sent him. Thankyou so much to all the Level 4's - this really cheered him up. We were laughing over many of them. I have one question - why were there so many volunteers to torture Owen's brothers while he is in the hospital??? Owen just laughed he thought that was great.
Owen perked right up and wanted to make muffins. He was orignally going to make them earlier this week to take with him to Aunt Annas.
Now he is watching an OLD godzilla. The one with all the monsters in it. And all the subtitles to boot. Guess he is getting his reading in!
Have a good night and I'll check in tomorrow!
1:30 PM
Owen is being discharged!!! The doctor just said we have to watch for the fevers or if he has any other issues. We need to keep him home and germ-free since his counts are low, Chris has not gotten the official sheet yet so I am not sure what they are. So all depends on how fast they get the paper work done - could be 10 minutes... could be a few hours... all depends on what is happening on the floor how fast they get to them. But soon..... I am nervous and excited all in one!
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Just a quick update to let you know we don't know anything yet. Owen had a good night - no fevers. He woke up at 2:00am with a stomach ache and got Zofran. I talked to him at 8:00 and he had another stomach ache. They gave him some benedryl. I just talked to Chris at 11:00 and the doctors have not been by yet so we don't know if he is coming home or not. It is so hard to sit here. I have been cleaning cleaning cleaning. Chris doesn't want me to head back up yet, it would make no sense if they are going to be sending him home. So it is just the waiting game and that is soooo hard!
The boys were happy to see me and we had a good night. Mom had dinner waiting when I got home - Thankyou Thankyou, one less thing to do. I slept pretty good until 1:30am then I was up my mind a whirling till a little after 3:00, then Jake was up at 7:00.
I'll let you know as soon as I hear!
Owen had his spinal tap at 8:45 this morning as well as chemo being applied directly into the spinal fluid. His spinal fluid still looks clean, but will be sent off for more testing. He will also receive the vincristine and aspariginese shots. He has the numbing cream on right now for the shots.
The doctor is removing him off of the antibiotics thru his IV. The cultures all grew back negative so it appears his fever was just due to his counts dropping to 0. If he does NOT run any fever today or tonight they will release us to go home tomorrow. Even though his counts are 0, they feel he is just as safe as home as he is in the hospital - probably more so since it is only his family he is in contact with. His counts probably will not come back now for 2-3 weeks so we have to just keep him at home and anytime he does run a fever he has to be brought to the hospital to check his cultures again and put him on an antibiotic for a few days. So life foe now will basically be bouncing back and forth from home to the hospital. So much for having a semi-normal life for the first several months!
He looks good. He has a headache right now from the spinal tap and is laying down - with a big glass of Mountain Dew!
Daddy shaved his hair today - I had to fight back the tears. He woke up with hair all over his bed and in his mouth. He looks good though - he has that perfect round head so he looks cute. Put that with his round steroid face and he is a perfect sphere! Chris forgot the camera so will have to wait to show you the new look until we get home!
I went to radiation with him today and yesterday. I was all teary eyed both times. He just looks so tiny and frail under that huge machine! A little boy should just not have to do this! He is all covered up and lays down with his legs frog style. The machine comes right up close to have a direct shot on his testicles. It takes about 10 minutes to get him lined up, and then we leave and watch on the monitor. The actual time is like 1 minute 10 seconds. They are doing both testicles on the recommendation of rochester.
If all stays well today I am planning on going home later this afternoon and Chris will stay. Jake has been asking when I will come home and I don't want to disappear on them either. I talked to Owen about it and he is okay - as long as I spend 'more' time with him than the other 2 - I can go home. I am telling you always the negotiator. So once I find out tomorrow if he is coming home I may just be staying home. I will give the house a good de-germinization. Tyler does have a runny nose again so we will need to keep them apart and wash everything Ty comes in contact with.
If anything chanes I will let you know, thankyou all for being there!!!!
Nothing has really changed much. They did NOT perform any of Owens chemo today. They are waiting until tomorrow to do all three (the spinal tap, vincristine in his hickman, and the aspariginese shots in his legs). Have not heard any news on the cultures yet, and may not until we go to the doctors for the spinal tap at 8:45 tomorrow. As for me I am totally wiped out and exhausted. Between not much sleep last night a long day just the stress of being here and starting the 'hospital' journey wa soon than I thought we would. Take care & I will update tomorrow as soon as I can.
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10:03 AM
Wow what a long night.
At 10:00 we were admitted and put into a room. At 11:00 the dressing on Owens Hickman was changed to make sure there was no infection there. It did look clear even though the biopatch had appeared a little yellow.
Around midnight he was given his prednisone medicine since he had missed his dose at home for the evening. It was Owen who remembered he had not had it!! Good Job O! Around 1:00 the Resident doctor came in to check Owen over and find out more information from us. She told me then that Owens ANC which is basically his immune system had dropped to 0! That is why he had to be admitted. The White Blood Count was low but not low enough to admit him but having become Neutrophenic they had to admit him. I was so shocked that he bottomed out! Even though he has only had a few treatments of chemo, it will affect some kids differently. The doctor had originally thought with Owen going into this healthy that his counts would not drop until probably March. The concern was there due to his cough and a little crackle in his lungs that he also could have walking pneumonia.
At 3:00am we were back up for more culture draws and they also did a periphyl (directly from the vein) to compare to the blood draws from his hickman line. Then off to X-ray to get a chest xray. Owen was burning up with fever again at this point 103! He was given tylenol and by the time we returned to the floor it was kicking in and he was feeling better. He was also given an antibiotic through the hickman line.
Finally to sleep for real! I was up at 7:30, and called home, Chris was already on his way.
The doctor for the floor just left. It is still to early for the blood cultures to have any results. He said he did not think Owen would have the spinal tap today due to being at 0. However he would still receive the 2 types of chemo (Vincristine and Aspariginese shots), and he would go down for radiation. He is waiting for Owens doctor to respond to this.
Owen starts a new medicine today (and would of at home also) It is called Bactrim.
I will let you know as we find things out. But as long as Owen is ANC = 0 he will not be allowed to leave. He is basically in isolation.
While taking a shower last night Owen noticed his hair IS starting to fall out already! I am so sad - I am not ready for this! He on the other hand is happy and wants Daddy to cut his hair. I think we will wait a little longer as it is not coming out in clumps yet.
Till later - thankyou & keep thinking / praying for us!
At 10:00 we were admitted and put into a room. At 11:00 the dressing on Owens Hickman was changed to make sure there was no infection there. It did look clear even though the biopatch had appeared a little yellow.
Around midnight he was given his prednisone medicine since he had missed his dose at home for the evening. It was Owen who remembered he had not had it!! Good Job O! Around 1:00 the Resident doctor came in to check Owen over and find out more information from us. She told me then that Owens ANC which is basically his immune system had dropped to 0! That is why he had to be admitted. The White Blood Count was low but not low enough to admit him but having become Neutrophenic they had to admit him. I was so shocked that he bottomed out! Even though he has only had a few treatments of chemo, it will affect some kids differently. The doctor had originally thought with Owen going into this healthy that his counts would not drop until probably March. The concern was there due to his cough and a little crackle in his lungs that he also could have walking pneumonia.
At 3:00am we were back up for more culture draws and they also did a periphyl (directly from the vein) to compare to the blood draws from his hickman line. Then off to X-ray to get a chest xray. Owen was burning up with fever again at this point 103! He was given tylenol and by the time we returned to the floor it was kicking in and he was feeling better. He was also given an antibiotic through the hickman line.
Finally to sleep for real! I was up at 7:30, and called home, Chris was already on his way.
The doctor for the floor just left. It is still to early for the blood cultures to have any results. He said he did not think Owen would have the spinal tap today due to being at 0. However he would still receive the 2 types of chemo (Vincristine and Aspariginese shots), and he would go down for radiation. He is waiting for Owens doctor to respond to this.
Owen starts a new medicine today (and would of at home also) It is called Bactrim.
I will let you know as we find things out. But as long as Owen is ANC = 0 he will not be allowed to leave. He is basically in isolation.
Till later - thankyou & keep thinking / praying for us!
We are being admitted.
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8:55 PM
Nurse just brought me the blood counts. His White blood count DID drop from 6.9 (normal) on Friday to 1.9!!! Normal is 4.5-13.0 He has paged Dr. Souid so we will wait to hear from him.
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It is 8:45 at night. Owen and I are at University. They took a blood culture and will let that grow over night to see if he has any sort of infection. The particularly get concerned with the hickman lines as they can grow bacteria very easily. Right now we are waiting for a blood count to come back. The doctor just wants to make sure his counts did not take a drastic fall from last Friday. If they come back ok we will be on our way home. Otherswise they will admit us. I don't think his counts will fall that fast, as they were excellent before.
The doctor did give me an antibiotic prescription for Owen's cough. He has basically had it since he had the 2 instances of strep. Then he had 2 days of anestesia, which can prolong a cough. Combined though with the headaches he thought it may be a sinus infection.
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6:05 PM
Owen has 102.4 fever - I am taking him to the hospital - will try and update later.
This morning Owen got up okay and seemed happy. Him and Sean ( a friend who catches the bus here), were laughing and watching cartoons. After Sean left Owen went in to brush his teeth and started shaking all over and said he was freezing. Mom didn't think he was faking - but Owen is a very good Con artist. He didn't have a fever. He wrapped up in a blanket and seemed better.
Chris and Owen left for Syracuse for the radiation. Owen slept the whole way there. Chris said they got rightin. Once they got him set up on the table, Chris had to leave and watch on a monitor. Owen held perfectly still and the actual treatment only lasted about 2 minutes. All set and off for home. Owen told Chris his stomach was upset again and cried that he couldn't go to school. So Chris brought him home. He slept most of the way home again, ate lunch and took another nap. It is so hard to say if Owen is fighting going to school or really having symptoms. I told him he will be allowed to have whatever he needs at school and if he doesn't feel well he can go see Nurse Jane and lay down. I told him he would only be a school a few hours each day and he needed to try.
So tomorrow is another day and he will hopefully go to school in the morning. His appointment is in the afternoon, so Chris will pick him up at lunch time. Grandma Pat will be better at reading Owen to tell if he is trying to get out of school or really not feeling well.
Owen and I did quite a bit of homework tonight. He didn't do any last night because he got so upset with his stomach. He was fighting it at first and saying he didn't feel well, but once he saw I wasn't stopping he pushed on and finally snapped out of it and worked hard. I wish I knew what was going on in his head. Is he really not feeling well? Is he afraid? Is he nervous of school making him 'more' sick? I don't know and he can't seem to tell me what is going on.
Till tomorrow - have a great night and thanks for checking in!
Today they just made the template for where they will be performing the radiation. This way each day they can quickly get him in and apply the template for placement of it. He will go tomorrow at 10:00, and then we will need to determine his schedule for the rest of the week. I am waiting to hear from the Onocologist office as to what time his chemo and spinal tap are on Thursday so that we can schedule around that.
So that being said I am hoping to do some what of a schedule with school. Either Owen can go in the morning to school and get out to go to radiation. Or go to radiation first and then come to school. I am meeting with the teachers and principal on Wednesday morning to iron out what is needed as far as tutuoring. I called home and Owen is sleeping right now.
I think that is why I am thinking a 1/2 day of school (morning / afternoon) while he is in radiation is best. The drive over and back plus school would be a long day and I don't want to drain him.
If nothing changes today - I'll just check in tomorrow with you all!
Mrs. Smith his reading teacher came at 10:00 and Owen worked very hard and did great! She brought Chocalate Chip cookies - we are going to get spoiled. Especially my boys since homemade baked goods are few and far between here! Thankyou!
Owen took his shower after and we got his hickman bandage change done. He was coaching me the whole way. I guess I pulled the ol' bandage off a little too fast. He said I did it ok, but next time I needed to just take my time a little bit... Then I cleaned it, and then when I went to put the biopatch on (this is a little cloth type circle that goes right over the area that the tubes enter his body so the sticky tape bandaid does not pull the tube) he says - 'remember sunny side up'. There is a shiny side and this side faces up. Wow maybe he'll grow up to be a doc - he certainly knows way more medical things than someone his age should! Then we flushed his tube lines and he was good to go.
He just left to go over to a friends house. I decided to let him go since he has been feeling great for a couple of days now and is really itching for some friend time. I told him it wouldn't be long - an hour. He replied 'Or two at the most' Always got the answers - maybe he'll be a politician!
Tomorrow he starts radiation - and keep your fingers crossed that we can get it moved to Auburn!
We are having a few friends over for the Super Bowl! Miami is not in (not even close!) so I am just routing for my numbers!
Have a great day and thanks for checking in!
Overall it was a very good day. Owen did take a short nap for about 45 minutes but that was it! He kind of went up and down as far as energy. He would play (even sword fighting with Jake), then lay down and rest. He even played with his DS video game, first time he has played a video game in quite awhile. He had a few Steroid outbursts today. He wanted Chicken Nuggets with sweet and sour from McD's and I said no.... major tantrum. Once he calmed down he apologized and had chicken nuggets from the freezer. The other was due to not getting to watch a TV show. We made it through and he is back to Owen again. How many more days on steroids??? I think 20, way too many! He is laying down now and running a little fever 99.6, so we have to watch. He seems to do this though too, go up and down with fever, but never hits the magic 100.4 number that we have to call the doctor on.
So here's to hoping we are on the road to feeling normal again! Talk to you tomorrow!!!
11:45 AM
Last night Owen got sick again. So he has decided pickles and KFC are no-no for eating.
Today is starting out great! Owen got up around 9:00, all smiles. He ate a double helping of raisin bread and then Mrs. Vasquez came for Math. Owen worked for a while. They were working on equivalent fractions and the light came on! He didn't like me working with him on this so Mrs. Vasquez used her wonderful skills to bring it to his level- they used a chocalate bar! Now there is inspiration. Of couse Jake wanted in on that action and luckily she had some extra to share.
Owen has been playing and quite chatty so far. He just layed down now to rest a little. But so far this is the most active he has been. Lets keep our fingers crossed. I will let you know how our day progresses.....
We then got checked into a room to wait for the doctor. He was not on the floor and they were looking for him. Owen wasn't feeling well and fell sound asleep on the table. The nurses, decided to go ahead and access his hickman line for a blood test. They were unable to draw any blood! The hickman line flushed (saline going IN) fine, but nothing came out when they went the other way. The doc walked in and they continued to try and figure out a way to get the line working. Now they had him try several positions, arms up, arms down, on his side, sitting up ... on and on but nothing was working. The doctor asked Owen to stand on his head and spit jelly beans - Owen just grunted - he was not in the mood to joke he didn't feel good...
Finally at 10:15 they decided to put TPA in his line. This is a solution that will desolve any clots in the line. They were thinking if the line flushed but couldn't draw there might be a clot that was acting as a valve. When they tried to draw blood it would pull over top of the line sealing it. The TPA needed to sit for 45 minutes or so. First the doctor finished his exam. We told him about how sleepy and sickly feeling Owen has been. He didn't seem worried. The Aspariginese chemo he recieved last Saturday does affect some kids that way. Owen also had a blotty skin on his palms this morning but he said that is from the steroids, typically it is on the face but sometimes other parts of the body. He said if the chemo was affecting his body the blood test would show it. But as Owen's body got use to the treatments the upset stomach should subside. They gave Owen his chemo through his hickman line and 2 more Aspariginese shots in the leg again. Owen got very upset because he didn't have numbing cream on his leg but he handled it like a trooper. We went and sat in the TV room while the TPA worked. Owen ate his other muffin then....
By this time we had missed our 10:30 appointment with radiology but they had called down to give them a heads up that we would be late. When the nurse returned at 11:30 to try his lines - they worked! Yeah!!!! Otherwise he would have had to get his blood drawn the ol' way through a needle. They said the hickman would have eventually worked, sometimes it is positional and with extra weight from steroids can put a pinch on the line. But luckily we are back in business!
Off to radiology. We met with the doctors and they are going to do 2 1/2 weeks of low dose radiation. The total treatment time should be about 5 minutes. He should not really have any side effects from this, other than their is a high chance he will not father any children. There is always his other testicle, but some radiation will probably affect that area also as well as having had the full body radiation before. But as I said that is the least of my concerns! His first appointment is monday at 10:00. I am going to ask then if he can receive his radiation on Grant Ave. I found out that it is the same practice that does the treatments there. How nice that would be not to have to drive to Syracuse for 5 minutes!
Back up to onocology. His blood tests look great. No problems with the pancrease, or sugar levels which would be a sign that the aspariginese chemo was affecting him. So it looks like it is just his body not liking the chemo and hopefully will adjust so he can function a little more normally! However since he will be having treatment everyday he will probably be out of school due to that for a couple weeks, unless we can get them in Auburn. This weekend his teachers are coming to work with him, and catch him up.
So at 1:15 we were on the way home! Owen wanted to go to Friendlys for lunch - I know can you believe he wanted to eat AGAIN! However after a few minutes in the car he wasn't feeling well and cancelled that request. Our friend Pam got Owen the wrist bands to help with motion sickness in the car. (Thankyou Pam !!!) I forgot on the way home to put them on right away! After I put them on he seemed better and then fell sound asleep again.
I dropped Chris and Owen off at home and headed into work for a little bit and then to the store for all the steroid cravings! Owen is watching 'Big Daddy' now and resting. He did take some of his Zofran medicine because he threw up a little while ago, it was a real throw up, not the dry heaves. It didn't make him sleep this time, but he also had taken a nap for a few hours when I had first brought him home.
Tyler is acting a little better, but is not eating and drinking very little. I even brought home KFC for dinner - a BIG favorite. He took one bite and started crying and left the table. Poor thing he is probably starving and just can't eat!
Jake is Jake. We are working hard on the potty area with him and are probably tramatizing him. He refused to do #2 in the potty. So everytime he goes in his pants the 'Easter Bunny' is very unhappy and takes away a toy. He is very upset and wants to know when the Easter Bunny will bring back his stuff.... I hope when Easter comes he doesn't bop the bunny because he is mad at him!
So until tomorrow.... thanks for checking in!
The doctors did want to see Tyler, mostly because of being in the house with Owen and making sure nothing big was brewing. So off we went. It sounds like he has a respiratory infection started. She said he has a crackle in his lungs which could be pneumonia or bronchitis. So he is going on an antibiotic to try and stop this in its track and keep the household healthy! Hopefully we can get Owen back on track tomorrow too!
Owen got a special package in the mail. A hard drive for his new X-Box! This will let him play on-line or regular xbox games. Thankyou Aunt Susie!!! Daddy got it installed, but Owen has no desire to play, it makes him sick right now. NOW that is how we know he is really sick! Don't worry I am sure he will get plenty of use of it later...
1:18PM
Nothing new. Owen continues to feel off and on. He has more down time than up. Even today when Mom was going to her house with Jake because Chris was out of work early, she asked Owen if he wanted to go. He replied - 'No if I am going to feel awful there is no sense in going anywhere'
I feel bad for him. I am glad that we are going to the doctors tomorrow and maybe I can get some answers. He just shouldn't be feeling this crappy already! I do think some of it is his nerves. He has totally devoured his nails on his fingers and is always fidgetting. I think he is a little more nervous about this whole thing than he wants to let on.
Tyler stayed home again today. He was no longer running a fever but is just lythargic. He just sleeps and sleeps and sleeps. He doesn't eat or drink. I called the doc and will be watching him for dehydration. However he has no other real symptoms. The nurse will call me back if the doctor wants to see him, but otherwise we just have to keep an eye on him for any signs that he is dehydrated.
What is a normal day like?
I'll let you know if anything changes otherwise I'll update after our appointments tomorrow.
Owen continues to be on and off with the way he feels. He slept late and then slept most of the afternoon. Tyler is sick again, running a fever and not eating. Never a dull moment here!
5:07am
Owen was up at 5:15 'dry heaving' again. He says he feels worse. I got him to take the anti-nausea medicine, which was a fight since he took it last night at 10:00 and it was NOT eight hours. Well I guess he's working on his math! I convinced him the 1/2 hour early would be okay and he finally took it. I am hoping this will kick in. I will let him sleep in and hopefully when he wakes up he will be fine and can go into school a little late. He was absolutely fine yesterday after he woke up from the Zofran at noon.
He did get ALL his homework done that was sent home. I do worry about him missing so much school. Homework just will not be enough. I will be meeting with his teachers to set up some home tutoring sessions for the days he misses. The kids are also asking lots of questions about chemo and hair loss and maybe I can shed some more light on this for them too.
I'll check in later and let you know how the day goes...
Well Owen is so-so. He was sick again this morning, throwing up at 8:00am. After he took the Zofran for his stomach it knocked him out. He slept until noon. After that he was fine and his ol' self. So I guess I need to figure out how to give him the medicine at 4am so he can sleep for a few more hours and then be fine to go to school! It's too bad the medicine he takes makes him go to sleep. I will have to talk to the docs to see if there is something different he can take. His appointment has now been changed until Friday because radiology can't see him on thursday. We go for chemo at 9 and then go to radiology at 10:30 just for a consultation to go over what they will be doing. I am not sure when the radiation will start, I guess I will find that out Friday. So here's to a good night and hopefully a better start to tomorrow!
Tonights Steroid cravings were:
Green marshmellow jello (like at the summer picnics) - Wegmans had it on the salad bar!
Potato Salad
Waffles filled with Strawberries
STEAK!
New toothpaste - his kind taste yucky now.
5:44 am
The anti-nausea medicine 'Zofran' seemed to do the trick! Although it made him fall asleep at first he was awake by 5:00. I had him take a shower, the Lincare home nurse was coming at 6:00 to watch us go through the first dressing change for his chest bandage over the hickman and to flush out his hickman lines.
Owen was nervous about me doing it since I have not done it in so long. I made it through, a bit awkward, but my technique will return and I will whip right through it again. Owen thought I did a good job when I was done - Thanks Buddy!
Owen ate after the nurse left and he stayed up until 9:00, smiling and laughing and being Owen. It was great to see him back after 2 days of laying in bed! The nurse today at the hospital was surprised we had not been sent home with this medicine. I will need to brush up on out-patient meds. Owen was in the hospital from day 1 last time so any meds he needed to keep him comfortable were just given to him, guess I don't realize that there were alot of side-meds outside of chemo givien. He had to do mouth swishes last time to prevent mouth sores from the chemo, so I will ask about that thursday. Although the homecare nurse said scope would work and Owen loves Scope!
I will let you know how the day goes but heres hoping it is a much better day!
He did perk up a little bit when Grandma arrived with Jake from school at 11:30. She brought some KING KONG action figures! This kept him happy for about an hour. He even came down stairs, but his headache and stomach issues soon returned. He went back upstairs to rest.
I ran into Wegmans to get his medicine and got him to take that, he is now sleeping again, his temp is 99.6. So have to keep watching that.
He is scheduled for chemo Thursday. We have to be there at 9:00, his chemo is scheduled for 10:00, but they are also trying to get us in for the start of the radiation.
The people for homecare are coming at 5:30 tonight to deliver the supplies for taking care of the hickman. The dressing changes and flushing the lines with saline. The nurse the other day only did the dressing change. She did not flush the lines and I would like someone to go over that with us again too. Plus she was not sure on all the time lines for changing the dressing and flushing the lines as she was not a normal nurse on the floor.
Here we go again... everything is coming back.. all the worries, all the maintenance... I have to take a deep breath and relax. Daddy is on his way home. He had the choice of being first to leave on the job or staying and finishing and wouldn't get home until around 2am. So with Owen not feeling well for 2 days he opted to come home.. just in case. Hopefully nothing more pans out on this.
Owen woke up from his second nap of the day a little while ago. He was a little warm 100, have to call the doc at 100.4, but he has actually gone down now to 99.4. He was complaining of a headache again, so I convinced him to eat. He ate a cheeseburger and french fries, and then asked for waffles with butter and syrup! He now wants daddy to bring chips and dip home when he arrives from the SU game. Yeah! Now I know now the greatest of meals but what ever the Steroids ask for we try to accomodate, unless he ends up only craving junk. Let me tell you a little bit about steriods...
Last night Jake asked for strawberries.. so I gave him the last of them - 6 strawberries. There actually was another whole pack in the fridge but I didn't know it at the time. So Owen asked for some. I told him that was the end and Jake would share. So Jake gives Owen 1. As Owen slowly ate his, Jake quickly made dust on the others. When Owen asked for another there was only 1 left and so Jake wouldn't give it to him and quickly shoved it in his mouth. Oh my - this is the end of the world! Owen started crying and yelling how selfish Jake is. He is the one with cancer and Jake can only think of himself! Off he ran to his room and slammed the door crying. I went up to try and talk to him. Again he says how Jake should be nice since he has cancer. I said, well Jake is doing a great thing for you again by giving you his bone marrow... no good. "You're MAKING him do that, he doesn't know!" I tried many other routes no good. So Daddy came up and tried to talk to him... He told Chris that the strawberry was as big as his night light and Jake ate it!!! Well Chris had to laugh and that got Owen laughing so end of Steriod terror time!
Owen just came down and is feeling alot better now. We'll see how long it lasts.
Well good night and I'll write tomorrow! Thanks for looking in!
Sunday January 29,2006 1:29 PM
Owen is not feeling well today. He got up about 9:00 and said he didn't feel so hot. He said his stomach was upset. He layed on the couch for about 40 minutes and then he went back up to our bed. He crashed right out for an hour and a half. When he woke up he said his stomach was better but he had a headache. I got some food in him, but this didn't seem to help. He continued to lay in our bed for awhile and then came downstairs but only lasted a half hour. He says his stomach is upset again.
Tomorrow I have to call to set up our Chemo treatment on Thursday and I am going to see what type of medicine he can take for an upset stomach. When in the hospital they give you an anti-nausea med, but being at home I don't know what he could take. Poor Owen it breaks my heart to see him so down. He did have 2 days of chemo and his body is probably adjusting to it again and I know we will have good and bad days. At least he hasn't actually gotten sick or run a fever, he just doesn't 'feel right'.
I'll let you know if he changes any, but it looks like a quiet resting day.
Due to the crisis, we were delayed getting into the treatment room and didn't get in until about 12:30. He went through it like a trooper as usual. Then he had his bandage over his hickman changed and the site where it enters his body looks great. Once this was done a big smile came across his face and he commented how that wasn't so bad! We had to hang out another 1/2 hour to check vitals and then were on our way. Barb - one of the nurses aids was working too who Owen loves. She is always teasing him. When he got whiny 2 years ago she went and got him a baby bottle. Well that pulled him out of it and he was back to his joking self.
Owen had a headache on the way over and the sun bothered him, which is a side effect of the chemo he received. We put up the blinds in the back and let him recline in his seat. On the way home it was the same, and the chemo he received today can also cause headaches. He crashed the whole way home. He is up laying down right now. We just have to watch for temperature and a swelling in his legs where the shots went.
Hopefully all will be uneventful and he will be feeling better in no time. Speak of the devil here he comes and is all smiles. He says it is just the car that gives him headaches and he can't go in the car. I said we have to in order to get to the docs. He said no Mom I just can't ride in the car. So if any of you have a spare plane we could borrow to get back and forth to Syracuse let me know. Thanks for checking in, I'll update tomorrow on how he is feeling.
We arrived at 11:15, checked in and off to the Pediatric surgical unit. We were all checked in and waiting to go by noon. His surgery was not until 1:00. Right on time he was in and ready to go. The surgery took about an hour, then Dr. Sadowicz performed another spinal tap and also put some chemo directly in his spinal fluid. At 2:20 I was able to go back to recovery. He was still quite groggy. He didnt' talk but kept looking like he was in pain. I finally got it out of him that he was in pain and we were able to give him some pain medicine. Another 45 minutes passed and they still had not moved us to the regular recovery room where both Chris and I could be with him. I asked the nurse why we were still in the big room and she said his heart was having 'flutters'. I watched the monitor and sure enough his heart rate was nice and even and then it would drop real quick and then be normal again. She said it was normal sometimes after anestesia but wanted the anasthesioligist (sp?) to take a look at him. The anasthesioligist did come over and didn't think it was anything since he had no chest pain or trouble breathing but ordered some lab work for electrolytes just to be safe. The also came and took an xray to make sure the tube was inserted correctly.
I went out to tell Chris and let him go back to be with Owen for awhile. I called the 5C office ( the onocoligist regular office) because it was almost 4:00 now and they would be closing. They said the office closed at 4:30 but we would be able to go to the pediatric onocology floor (where we stay when we are inpatient) to get the required chemo. They finally released us at 4:15 to go up to 7H and said they would let us know if the lab results were okay for us to go home but we could at least get started on the chemo.
First Zofran ( an anti-nausea medicine before chemo), then two different types of chemo. We were done by 6:00, so home by 7:00, LONG DAY! I ran down to the cafeteria to get Owen a pizza to eat during his chemo - he had not been able to eat since 11:00 last night so the poor thing was starving!!!! It was really weird going back to 7H. We were in the main gathering room where the fridge, and snacks are. I can't explain the feeling but it was like the dreamland I was still partially in - that this is not real - finally burst. We are back in hospital land. We only knew a couple people, but it was like seeing family. Sandy gave me a huge hug and the tears were flowing. She had to do a double take, when she saw us walking in.
We have to go back tomorrow for another chemo drug. This one is a shot and it is put right into his leg muscle. We then have to hang around for an hour or so to monitor his vitals. They will also re-train us on the care of the hickman line he had put in. I think I remember it, but would rather go through all the steps again to make sure my cobwebs have not gotten too thick. I have numbing cream to put on Owen's legs because they may have to give him 2 shots, it depends on his weight. So at least they will not hurt. Owen is feeling pretty good. He is sore from the surgery but the pain is tolerable. He was getting a little sick feeling on the way home in the car but did not get sick. He was just ready to get home, as we all were.
His report card was here when we got home and he did AWESOME!
Spelling 100, Vocabulary 96, Lesson Assessments 93, Listening 100, Reading Comprehension 80.
Math he does well in but has to work on his facts, he has to 'think' to come up with the answer instead of having them memorized. (ie. 6 plus 8) He can reason out the problems but then has a hard time explaining his reasoning. I understand what he is trying to say (and so does his teacher), but with the ELA tests or others reading it they may not. I have tried to work with him on his reasoning but he gets angry saying he knows how to do it and he said it right. We will keep working on this.
He also got cards made by his class. They were beautiful! Thankyou so much! His fellow classmates, teachers and all the families of Cayuga Elementary are just awesome people! They are always thinking of us and I don't know what we would do without such an awesome support system.
While Owen was in surgery I went up to visit Kelly Lipishka who is in the hospital still fighting her battle with AML. I hope she doesn't mind me writing about her but I want to reach out to you all to send some prayers her way. She will be going for a Stem Cell transplant (similar to the bone marrow) in Buffalo sometime in March. She has a 6/6 match on blood from a donor which is great news. She is really down though. She has been in the hospital now for 30 days. Her counts are not rebounding from her last chemo treatment. She is not eating or drinking which doesn't help. It was upsetting to her to hear about Owen, but I knew she would find out one way or another and so it was better to hear it from me. I was very 'UP' talking about his relapse and saying we were doing fine with it, not what we wanted but that we would get through it all again. I told her several stories of Owen and his upbeat attitude towards it all. She was laughing with me. She said she wished she could do that but she was in a downward spiral. I told her she NEEDED to get his attitude. Attitude is 1/2 the battle and I believe that! I told her she had 2 little kids at home waiting to see her and she needed to get home to see them and have time with them before taking off to Buffalo. I hope I made a difference. I told here when we came next week for Owen's chemo I would check on her, but she BETTER NOT be there!
Well time to relax on the couch and watch 'The Wedding Crashers', we need a little humor!
I will talk to you all tomorrow!
I keep forgetting to tell everyone the great news! I am sure you all remember our headaches with getting Owen to take his medicine last time. We would spend 1-2 hours trying to get Owen to take his medicines. One had to be taken with red mountain dew, another with pudding, another with sherbet... on and on. Well Owen is swallowing a pill now!! He takes his
steroid pill with water and no arguments! So hopefully as the meds increase we can get them in pill form and he will keep it going. He can't believe how easy it is to swallow and it only has a little after taste. We told him it will get better as he gets better at swallowing them, there should be no after taste.
I spoke with Dr. Mullen today at Rochester Strong Memorial. He pretty much said the same the thing. He believes transplant is the way to go due to the 'unknown' in Owen's type of leukemia. Even though right now only the ALL has surfaced he says there is a risk that the AML has just not shown yet. Last time it was several days after the ALL was detected that the AML came out. So by going the transplant route you are sure to be treating both types of the leukemia VS the chemo alone route that would only take care of the ALL. We know from before that in Owen's case, the chemo did not touch the mixed lineage.
He says we could try the chemo alone treatment for 2 years, and IF he were to relapse to go the transplant route, but everytime you relapse and then go after the leukemia again you are opening the door for failure. So I am feeling better, and we are definately thinking Transplant is the route. But as he says lets wait and see how Owen reacts to the chemo
treatments, make sure his body deals with it as well as it did last time because you want to make sure you enter transplant mode in remission and with a strong body.
I asked about after transplant - would they be testing his testicle's to make sure no leukemia is returning or hiding there. He said no. Due to testicular relapse being rare and that fact that it can take a few years to even show, it does not make sense to continually biopsy the testical. The chance of catching it any sooner than by catching it the way Owen did with an enlarged testical are minimal and really do not add anything. Due to it being contained it would take a while to enter the blood stream so there is time to find it naturally, vs biopsy.
He does recommend have radiation to the testicle VS removal. Due to Owen being young and that by removing it you remove the ability of testosterone being produced you through another thing to watch into the pot. By radiation you are putting a direct form of killing the leukemia to the testicle and that is the standard and better way to go. So I think we are leaning this way also.
Tomorrow we have to be there at 11:30 and surgery is scheduled for 1:00. After surgery he will get his first chemo treatment. Should be a long but uneventful day. I will have to dust the cobwebs out of my head and remember how to take care of the hickman. I am sure they will retrain us. I still have a lot of supplies from last time left over but I would
imagine they will want us to start with fresh - not sure if these things expire. But even if they have they can use them for training parents on the fake lines they have.
Well until tomorrow... thankyou for checking in and thinking of us - you are all great!
We have 3-4 months depending on how Owen gets through this first round of treatments to decide whether we would want to perform the transplant again or continue with the standard ALL treatment. They are networking with cancer doctors around the world for their input also. I have to talk to Dr. Mullen, the Rochester Bone Marrow doctor to get his input, but he feels strongly on repeating the transplant. But he would like to talk to us about it also. Basically it comes down to our preference unless anything changes during the initial 3 months because we are as much the experts on this as they are! Now that is scary. I am not sure I am thrilled about being the one in charge of deciding what path to take with my son’s life!
The detailed Fish Test for a detailed analysis of the bone marrow was performed and it was all normal cells so that is great news! For the first three months Owen should feel pretty good with mild side effects, but will probably lose his hair again. He will be able to attend school and that will start tomorrow! He will miss Friday as he is having the surgery to put the Hickman tube line in. But then back on Monday. Yeah!!! I think it is very important to keep up with school as long he can. We have tomorrow to change our mind and put the port in under his skin, however I think we are going to leave it as a Hickman since we will probably go to transplant and that will be best for the transplant method. During the second or third month his counts may drop and then it will be a day by day decision on whether to send him. We will be counting on the school and families to help us with that once again!!! Although his immune system will not be as suppressed this time and catching a cold is not life-threatening this time, however if he develops a fever it will mean having to be hospitalized to be watched. So we have to weigh the pros and cons at that time.
As far his testicle goes that is another decision we have about a week to make. They can either put him through about 5 days of low dose radiation treatment directly to the testicle area, or they can remove it and not have any radiation. There is no real value to either way. In one aspect it he would not have to go through the radiation, but to remove it would be a personal thing as far as going through life with no testicle, although they can put a fake one in which would be a minor surgical procedure. At this point either way his testicle would no longer produce sperm, although it would produce testoserone. Although him being able to father children is the furthest from my mind… I just want him to have a childhood and grow up to enjoy life! I will also discuss this with the Rochester doctor for his input.
So for now he is on Steroids – which I think we are already seeing side effects. He was VERY hyper today. He is also already starting to eat a lot. The steroids can cause puffiness in his face and also various mood swings so look out! The reason they put him on steroids is to get a jump start on causing lymphoids to die. The streoids will signal to lymphocites in his system to shrival up and die. Friday when he gets his Hickman line in he will also get 2 different types of Chemo. Both are easy on the system and will take a total of about 15 minutes to push into his system.
From there we go to 1 x week of the quick chemo push (outpatient). In four weeks they will repeat the bone marrow test and admint him for the 5 days of chemo.
So I guess things are still looking good. The talk of repeating transplant is a little alarming, however Jake was such a GREAT match last time, and there should be no complications this time. The other thing is he should not require the high doses of chemo and there will be no radiation prior to going in for transplant. I will find out more about the prep work for transplant with Dr. Mullen.
So my mind is twirling with a million thoughts and I am sure I will think of a million more questions. I had 2 pages of them today to go through with the doctor. He didn’t mind though he said that is why it is better to let us have time to think and absorb before going to the consultation so we are prepared with questions. So I will let you all know what I find out from Dr. Mullen tomorrow.
My other two boys have been sick all week. The doctor put Tyler on an antibiotic Tuesday so I think he should return to school tomorrow. Jake is coughing alot but no other symptoms. But my goal is to get the two of them healthy again and quit passing this bug back and forth that has been around since the beginning of the year. I want to get our house germ-free to start this whole thing off.
As for me I am going to go back to work tomorrow, and then off Friday. I am hoping a little bit of normalcy with help me relax a little and think. So until tomorrow – Good night and Thankyou all for checking in and thinking of us – we need and love you all for it!
The doctor called this morning and the leukemia in the testicles is ONLY ALL not the mixed (ALL & AML) he had last time. They are still 'debating' the 3 percent of abnormal cells they saw but at this point he feels they are not anything.
So tomorrow we go in for our consultation with the doctor to review the whole protocol they have outlined for Owen and to answer my 'list' of questions. Wouldn't think I had any after going through this once, but we are on a different route and I have a whole new bunch of questions! So far this is the treatment plan:
Steroids - Prednisone - pill form 2Xday
Chemo - Vincristine - IV 1X a week, Owen will go to University hospital and receive this as an outpatient and then be released to come home!!!!
In 4 weeks he will go inpatient for 2-3 for Methodroxate Chemo. His stay will depend on how his body handles it and how fast his counts come back.
I believe this will be the schedule for 2 years. It will be a less intense chemo treatment than he received last time, so less toxic to his body.
He will be going in sometime this week to get an access port of some sort put in for all the treatments so he doesn't have to have IV's all the time. Last time we had a Hickman, which is actually a tube surgically put into his vein and then comes out his chest and has two tube lines. Either of these lines can be accessed for blood draws or IV. The other type is actually inserted under his skin is not really visible except for a bump in his skin. This can be used for IV access only, no blood draws, so those would still need to be done through his arm veins. We will discuss the pros/cons of each with the doctor tomorrow. I am also going to call my Cousin Glo, as her son had the port for his kidney cancer. So I want to hear it from a Parent the troubles or benefits she felt from having the port.
He and all of us should be able to maintain a semi-normal life with the exception of when he has to go for treatment and inpatient. Owen should be able to attend school and other functions if he is feeling well and there are no major illnesses around. His immune system will be suppressed but like last time where we had to keep him in a 'glass bubble'.
When I got off the phone with the doc I told Owen that we did not have to go to the hospital and his face DROPPED! He actually WANTED to go. They have good stuff there! Then he realized he could stay home and play Xbox. Well here comes Mom again with the bubble burster - ummm you will probably be able to return to school - we'll find out from the doc tomorrow. Again a look of shock! WHAT - how about my headaches? Alright calm down Owen, your headaches will cease, and life will resume as 'normal'.
I think he misses school, because he really wanted to go in and see everyone.... and I have homework here.... so must just be the hours he would be away from the wonderful Xbox!
Wow - can I tell you all how much better I feel. I could feel myself sinking and we had not even started yet. I think I was really trying to NOT to think the worst but not knowing and so many days of waiting made it so easy to start thinking it was the Worse.
So tonight I will actually sleep I think!!!! I will update tomorrow when we return to let you know all the details....
Thankyou all for checking in on us - I can't believe how fast and far the news has carried already. We love your messages so keep them coming!
He looked up our test results and we still have a lot to figure out. The leukemic cells in his testicle are ALL so that is great news, no AML and it is not mixed! There was 3 percent of abnormal cells in his bone marrow. Does not mean they are leukemia though. He says they are young cells, and look abnormal. So the possibility is there that they may be leukemia. He needs to check with Dr. Sadowicz tomorrow to determine if a 'Fish' test was ordered, which is a larger population of cells and more testing is performed. The test results from this take longer to return. If a Fish test was not ordered then they will repeat the Bone Marrow aspiration and retest it using this Fish test. This will give them a more detailed result of the abnormal cells, and also determine if they are leukemia if they are the Mixed or single type. If they are leukemia and are the mixed he feels Transplant is probably the way to go and Dr. Mullen in Rochester has been consulted. If they are only 1 type a more standard protocol for chemo will be used. If they are NOT leukemia, then they will go with a protocol of chemo that is more geared to testical cancer.
I told him I was very nervous with all the time that is already passing. Last time once Owen was diagnosed the leukemia grew rapidly. He assured me all this would be performed in the next day or TWO! I will be on the phone later morning to call Dr. Sadowicz. I need to get moving... I have been doing well through the weekend, because I thought it was nice to get my life 'organized', but thinking the answers would be here today. Now sitting around all day, and finally have to go calling for the answers I am starting to get really scared. I just want answers. After hanging up with the doc I just cried, and I think it is mostly frustration that is hitting me.
I know from reading other families on caringbridge that one family went through several fish tests trying to determine what the abnormal cells were. After 3 tests (which they had to wait several weeks between them) the cells turned out to be fine and he had NOT replapsed. But we already know Owen HAS leukemia, so why can't we START with a protocol and then determine... lots of questions... not alot of answers right now.
Owens headaches are indeed caused by the spinal tap. The doctor recommended letting him have lots of Caffeine drinks! Now there's a switch, encouraging soda! Owen isn't complaining though. Depending on how his headaches are tomorrow we will try to get to school again.
Tomorrow is another day.....
Monday January 23,2006 3:40 pm.
We are still sitting here... not knowing a thing. My nerves are about shot right now. I called the doc at 2:00. He was in with a patient but the nurse said she would have him call us. She did put me on hold to try and track him down at least. But here we are almost 2 hours later and nothing!!! Even a phone call to say they don't know yet or are still reviewing it... ANYTHING!
Owen was going to go to school this morning with me to say good-bye for a while to all his classmates. I thought it might be re-assuring to them to 'see' he is okay, before he disappears for awhile. But alas we did not make it. Owen started having headaches yesterday if he sat up too long. It is caused from the spinal-tap. After sitting up in the car from home to auburn his head was really hurting this morning so he went back home to lay down. So sorry we didn't make it in - but maybe we'll still be able to do it tomorrow if no one calls us..... but i am hoping i will not have to go another night in limbo.
Well little 'King-tut' is already enjoying the spoils of being sick again. He received a HUGE bundle of balloons from all the Multi-Age teachers (Mr. J, Mrs Vasquez, Mrs Smith, Mrs DeGraw and Mrs Holms). He loved it, he just 'loves' all his teachers, and won't let his brothers near them - because they are from his special teachers! Thankyou! Daddy spoiled him with an X-box 360 and Aunt Susie rolled in with lots of new games for it, thankyou Aunt Susie!
....
I'll fill you all in as soon as I can
We did NOT receive good news today. Owen has leukemic cells in the testicle. However the bone marrow aspiration and spinal tap did come back NEGATIVE! What this means is the leukemia does not appear to have spread to any other parts of his body. The biopsy, bone marrow, and spinal fluid will be sent out for detail analysis which will give us more detail as to what is happening. Due to it being Friday though - we have a very long weekend ahead of us to hear any news on Monday. The doctor believes since it only exists in the testicle that the cells there were left from the initial leukemia battle and were hiding and laying dormant these last 2 years. He said this does happen - it is rare - only 1 percent of males does it happen too. WHY does Owen have to be that 1 percent???? He has a very rare leukemia and now a very rare relapse? With that being said it is also 'good' news that is the case. It means the rest of his body has stayed healthy and it is not 'new' leukemia cells developing.
Where we go from here is very unclear right now. Depending on if the leukemia they found is definately isolated to the testicles, and depending on if it is One or two types of leukemia will show us the way. The onocologists in both Syracuse and Rochester will be reviewing the results as soon as they get them monday. This will determine if Owen will receive Chemo or Chemo/ Radiation, or need another transplant. If it is only one type of leukemia he feels they will probalby opt to try just chemo at first since that is less damage to the system. Although this is the treatment that is spread out over time and lasts 2 - 3 years. They may remove the testicle and give the area radiation, followed by chemo. Or just go right back to transplant. Since he did so well the first time around with that protocol. The doctor feels confident that no matter which route is taken that Owen did very well the first time with treatment that there should not be any issues this time and remission will be obtained again.
Wow how did we end up here again??? I totally broke down after the doctor initially told us before Owen went to the recovery room. I just sobbed and held Chris. I can't even explain the pain that ripped through my body. I somehow gathered myself back together so that I could go see Owen. He was in alot of pain from the incision in his groin and his testicle was hurting. He got some tylenol with codeine and he felt better once it kicked in. I left Owen in Grandma Pats care and that is when Chris and I went up to see the Onocologist doctor. (It was the pediatric surgeon that we initially saw). Dr. Sadowitz was the one who informed us of all the IF's that would have to be discussed amongst the onogologist team once some more detail facts were back.
I am doing much better now. I think I have calmed down enough to look back and see that IF Owen had to relapse this is a 'good' relapse. The fact that no new leukemic cells appear to be growing is a plus. Hopefully we can get rid of these last few villians inside him.
Owen is his normal SUPER hero self. I explained to him that we will be going back to the hospital next week - either Syracuse or Rochester and probably have to stay awhile. He shrugged and said OK. What?! Did you here me?!!! His biggest concern is getting the IV's he doesn't like them, but realizes he has to have them. I told him he will probably get his tubes put back in him and he said - Well its a good thing we already know how to take care of them. He is amazing. I am sure bottom line is he will be missing some 'school', hmmmm. I have already informed him that he will be doing work everyday. That 3rd grade is much harder and you need to stay on top of his work. He replied, I know, thats okay. Am I in a dream world. He is just making this so easy....
Ah - easy if that only were the case. So I am once again reaching out to you all, our HUGE support team. You were so wonderful to us last time. Calling, pitching in with the other kids, visiting, signing the journal, food, everything!!!! We will be in need of you all again, I have a feeling that this time around will drain on us alot faster, and will be so much harder. But then again we have our 'Rock' Owen leading the way in attitude!
Thankyou all - we love you and need you!
Thursday, January 19, 2006
Well my last update I said I could quit worrying - I spoke too soon. Our life has just been turned completely upside down again. Owen was diagnosed with Strep at the beginning of the year, not a big deal so was Tyler and Jake. Chris had just gotten over having some bug like the flu and then I got it. We took Owen for blood work and all was fine. I took Owen back to the docs this past Monday because he was coughing all over again and not feeling well. He still had strep. Tuesday night he was complaining that one of his testicles was larger than the other and was hurting. At first I couldn't find the other one so I thought it had reclined inside him and thats why the other seemed big. But he knew what he was talking about. He found the smaller one and showed me how one was larger than the other. So back to the docs. She was not sure what it was but definately thought it needed further investigation. Today we went to a pediatric surgeon who thought it seemed 'solid' and not fluid, and sent us for an ultra sound. This confirmed it was solid.
Then the words that cut to the core of my heart... it is high probability that it is the leukemia!!!! Tomorrow we are going in for a biopsy, bone marrow extraction and spinal tap. Although the doc said it could be another type of tumor or results from the chemo/ radiation he had previously he did not think so. This is why they would perform all the tests while he is asleep so if it is the leukemia they will have all the information they need for determining where the leukemia stand.
Things have been so great, and Owen has done extremely well, the words that relapse were getting smaller and smaller were just music to our ears. He is over 2 years from transplant with no complications.
How did this happen! Why did this happen!? He is soooo much smarter and wiser and understands so much more now. He saw the panic in my face and the tears streaming down my face. I tried to brush it off telling him it is a mothers job to worry. That I cry whenever they get a bump or start school - its just what mothers do. I could see the concern in his eyes and the worry in his voice. On got him on to other subjects and back to happy Owen on the way home. But I have to keep busy and walk away as my eyes well up in tears again. I have to hold on to the chance that it is NOT the leukemia, that would be the obvious conclusion given his history... but it is not... it is just another mass and removing the testicle will be the end...
Please keep us in your thoughts and prayers and I will let you all know as soon as I can. Wow how I thought the days of writing in this other than to tell you how wonderful things were over. Please please pray for Owen.... we need you all so much right now.
All is well... I can stop panicing that all of Owen's 'symptoms' mean anything other than normal kid stuff!
Monday we went to the docs in syracuse and went through a list of concerns:
Headaches, stomach aches, joint pains, small rash that has come out since last friday, wart on his thumb...
If anything he could just be getting run down from not sleeping well... which translates to he needs to get to sleep earlier. The doc asked him what time he goes to bed and owen said 8:30-9:00, and gets up at 7:15. Seems like it should be enough sleep... but as I said, that is what time you are suppose to go to bed, but by the time he gets done calling to me 100 times about rubbing his legs because they hurt, needing a drink, not being able to fall asleep and another 100 excuses he doesn't 'fall asleep' till alot later. So really going to work on getting more, I certainly don't want to open the door for infections or being run down. Other than that his blood looks great, and the doctor is thrilled with the way he looks. So unless I get nervous and want him seen sooner ( i can always call to get a blood count) Owen does not go back until late spring!
Owen and I went shopping at 'Toys R' Us afterwards so Owen could show me all the things he 'needs'. From his descriptions I was totally at a loss of what he was looking for. What ever happened to just plain ol' Lego's???
Well we are moving into full mode for Christmas! Went to visit Santa this past weekend. Jake couldn't stop talking about 'HO HO' and what he wanted to ask him. However he wouldn't go anywhere near him, or talk to him. He dove on the floor with a terrified grip on Grandma Pats Leg. We did get him to stand next to Owen for a picture. Owen did ask Santa for Jake his requests. Owen and Ty had no issues as usual and were right in Santas lap. I hope Santa takes it 'easy' this year our house has no room in it for anymore toys!
I probably will not have anything to update the rest of this year so I will wish you all a Merry Christmas and Happy New Year now. Be Safe and have fun!!!!
As I was sitting here this morning reading through the many Caring Bridge Family web pages I have now become ‘addicted’ to I wanted to sit back and remember all that we need to be thankful for. Many of the families are experiencing relapse or battles with Graft VS Host Disease. This is the disease after transplant when the new bone marrow is engrafting into the new body.
I read these web pages and remember and give my blessing and prayers to them. It was 2 years ago that we were just being released from the hospital and going to celebrate Thanksgiving outside of there at the Ronald McDonald house. How excited we were to have a somewhat ‘normal’ dinner, not a hospital holiday. Wow how far we have come, going to sit down at HOME for a second year in a row with our family close by and Owen being here with us. Many of the families I am reading on have experienced so much worse. Owen never really had any complications after transplant. A fever here or there, but no GVHD, no long term re-hospitalizations. So as I read how it can be so much worse and so much more going on – I am thankful that we are safe here at home.
Going through the radiation, chemo, transplant, infections…. Was a nightmare for all of us. The nights I remember crying going to sleep and praying to make it through it all. Looking at my precious 6 year old and asking ‘Why Owen???’ Are my fears over with?
No way… Owen was suppose to go back to Syracuse for a check up the end of December/ beginning of January. I know have him going back on this Monday the 28th. Why? Well as you all know I have been saying Owen is tired, and complaining of headaches. I DO attribute it to his playing TOO many video games. But then as I read the other families stories, and their sons/ daughters relapsing, I start to panic. Am I brushing ‘symptoms’ off? I am constantly checking his throat for swollen glands, I am constantly looking at him and asking if he feels okay as he looks pale. So now I start becoming paranoid again… what if…. So to calm ME back down I decided to make his appointment earlier. We just had a vey extensive blood test in September and chances are nothing…. But I will feel better going.
So back to being Thankful - I just want to say over and over again Thankyou to all the people who have there for us and guided us through to where we are. If I miss anyone I am sorry – I do not mean too…and I may not mention you all by name but I thank each and everyone of you!
Thankyou to the Doctors and nurses at both Syracuse University and Strong Memorial – you have been wonderful to us and took awesome care of Owen. Thankyou to my Mother who as always has been a blessing. She basically raised my two younger children (then 4 years and 15 months) while we spent months in the hospital. Thankyou to my Dad and Leanne who always lend a helping hand and support to us in everyway possible. Owen’s diagnosis hit my Dad very hard… I think that is what finally made him start to have gray hair in his 60’s! Thankyou to my mother-in-law who always seemed to show up with food-in-tow to give us a great meal at the hospital. Thankyou to my father-in-law and step-mother-in –law, pitching in and helping out. Thankyou to my cousins Chrissy, Missy, Nina, Lisa, Pam, who helped give mom a break with the children and let her spend time with Owen at the hospital. Thankyour to Erin and Tim – friends of mine form the Down Syndrome association who pitched in with picking up Tyler many, many times from school. Thankyou to all my aunts and uncles ( Judy/Dick, Chet/Alice, Chris, Allan/Andrea, Bernie, Paul/Brenda, for their visits and gifts galore to Owen. Thankyou to my employer, Nucor, who gave me all the time I needed to be with Owen. Thankyour to my husbands employer, Murphy Brothers who did the same. Thankyou to Owens teachers Mr. Jorgenson and Mrs Vasquez who came to visit Owen often, and keep him up to speed in school. Thankyou to ALL of Cayuga elementary school staff and parents who devoted their time and gave a benefit for Owen and included all his friends. ‘Owens-Day’. They even managed to get Owens favorite singer ‘Jay Mankita’ to come and perform- just awesome. Although Owen was unable to attend (he had to be admitted a couple days before it for his transplant) he would have absolutely loved it!!! I promise when 5 years is reached we will have another celebration for Owen that HE WILL be at, for all to celebrate again. Thankyou to all of Owen’s Superfriends who organized another Benefit for us, which on a huge winter storm day, still brought out a standing room only event! I especially want to thank Tim Cuddeback for that benefit, he took total charge and organized an awesome event. I want to thank Art Wenzel too who MC’d the event with his usual ‘flair’. Thankyou Peter’s Pizzeria for your donation of food and time. Thankyou to all my friends, friends of friends, friends of family, strangers for all your well wishes, cards, gifts – you all defianately kept us going. Support is an awesome thing, and having so much was that spark that kept us going. So many people say ‘You are so strong… I don’t know how you do it… I would never be able to’ Which I have since heard you are never suppose to say to a parent of a child with cancer hmmm. But I didn’t mind. I appreciated the compliment that it ‘appeared’ I was so strong. I was not strong, I was/ am doing what I have to do. Anyone put in the same circumstance would do the same. Your instincts kick in and you just do what ever is needed. Much in the same way as all of you ‘kicked-in’ your instincts to support and help us out in anyway.
So enjoy your thanksgiving and remember to be thankful for everything you have. Family and friends are truly a blessing, and being all together is something that can never be replaced. I will update on our Doc visit this Monday, but I wanted to take the time to Thank all the wonderful people out there that have supported us for 2 years now!
IF I HAVEN’T SAID IT OFTEN ENOUGH – I APOLIGIZE – I AM SOOOO THANKFUL TO HAVE ALL OF YOU!
YEAH!!!! Its Happy 2nd birthday to Owen! Can you believe 2 years ago we were sitting in the hospital starting our chance to be reborn. All is well and we celebrated with cheesecake tonight. (3 more years to go.....)
Hi All!
We had some awesome halloween adventures. Party after party ....
We went to ZooBoo, which is where they open the zoo at night and it is filled with friendly ghosts, goblins, witches and more. Owen found many Darth Vaders to battle with ( he is Obi-Wan). Ty and Jake found lots of cuddly costumes to hug and hang out with. Although Jake kept asking where all the animals were. He knew we were at the zoo and he wanted to see them.
Anther day we were off to Tyler's Freedom Camp Halloween party. This is a Camp in the summer for special need childeren. Siblings can go too, but you must have a special needs child to attend. Tyler ran into his counselers Anna's arms when we got there. They loved the crafts, pumpkin painting, musical chairs.... and of course lots of halloween cupcakes. I had to keep a close eye on Tyler, he kept sneaking off to get just one more. Owen is growing up... he was 'bored' at the party, after the older kids who were light saber fighting with him left. He did perk up for the musical chairs.
Next comes the cubscout party. Started with a scavenger hunt, Owen is a true man. If nothing jumped up and down and said 'here I am' he was at a lost. He couldn't find anything. You know just like the ketchup thats right behind the milk - its impossible to find! :-)
We did skip the skating party, I was just burned out... Owen did inquire about it several days later on when it was. I had to confess that we just can't do it all!
Then Grandma Lea took the 3 boys to the halloween party at the YMCA. They had a haunted house, jumping balloon, and lots of things to do. She said Ty saw the jumping balloon and his costume was off in 2 seconds and in he went.
Halloween night was its normal crazy night. We travel around to all the grandparents houses, which are all over the county. By the time we got to Papa Freds it was 8:00, so we were only able to hit a couple of houses with 'normal' trick or treating, as the porch lights started turning off. Owen was devastated that we didn't get to his teachers house who lives on the same road as Papa.
So we have come up with a new plan for next year. We do the grandparents the day before halloween, then halloween night can be all regular trick or treating. This seemed to settle him down. I felt bad for him, he was so excited running down the street to start the 'real' stuff, and boom out went the lights!
Owen participated in a 'Kicks for Cancer' Fundraiser. They had one minute to do as many kicks as they could for their sponsors. I made the mistake of banking on Owen's laziness when it comes to anything physical and sponsored him a dollar a kick. Well 87 kicks later, he finished just beaming! It is a great cause and all money stays right here for local families.
Other than that life is normal.... no news to report. No doc appts. for a couple of months so life is good!!!!
I wanted to let everyone know that the benefit for Jonathan Moore is on Nov. 12,2005 1-? at the UNC. Jonathan is a 6yr old boy who is also Autistic, and has been diagnosed with ALL (leukemia). He also has a website. www.caringbridge.org and then enter his name jonathanmoore (one word) for the site name. He needs all of you, sign on and leave him a note.
We went to the benefit of John Tanouse this past weekend. He has just relapsed with AML ( he is an adult) after 3 1/2 years! He now has to go for a bone marrow transplant and has found a donor. Talking with his wife at the benefit, she told me he goes into the hospital for the chemo/radiation prep on 10/28 and his transplant is on 11/04 I got CHILLS! Those are Owens dates!!!! So Owen was VERY happy. He will be 2 this november ( remember getting a BMT is like being re-born so you now have another birthday. John will be re-born that day, so he will be 0! Owen couldn't wait to talk to him and tell him he was going to be older than him. John laughed and said he would be calling Owen to find out everything he needs to do. Owen thought the benefit was the coolest. He was not able to attend either of his. I think he knew more people than me! Or at least he walked around and talked to more people - he made alot of friends. He was out dancing up a storm - break dancing no less!
I'll check in again soon! Thankyou everyone!
Owen is following in his Uncle Steves foot steps. The picture above is his 'first kill'. He was sooo excited when he came home and ran into the house to show me. I screamed when I saw the squirrel- which thrilled him.
Our household has doubled in size. We have 3 dogs now as well as 3 kids. I think I need more husbands to help with all the work! So we have Nikki (4) our Goldend retriever, Champ a 6 month old boxer, and 'lil' Bo a 3 month old boxer. Wow are we crazy. We were looking ot only get a second dog, and got the older boxer. However the people changed their mind about giving him up ( the owner is in Iraq). So we gave him back, and got the puppy. Well needless to say the old pups owner called again and said the dog was not happy being back in the city after having full run in the country and wanted us to have him. Welll as you can see we took him back! So one big happy family!
Jake has started preschool at the Gavras center. He just loves it! He can't get out of bed fast enough in the morning to go. He is still Mr. Shy so far, but is starting to open up. Tyler is doing really well at school too. He has a very packed schedule, but is handling it well so far. He has been falling asleep in Social Studies, but I think he gets bored as that is not a one-on-one environment for him. But this is his first year and the exposure is good. Owen is doing great at school and still loving recess and lunch! :-)
He is learning cursive writing this year and he is very excited about that. Although he had a little set-back with his writing. He fell off his four-wheeler on Tuesday. He was so busy waving to us - he didn't have a hold when he hit a bump. He fell off and bruised his hand and some other minor scrapes. But was okay. I think we have some more rules to learn for riding on the four-wheeler.
There is a bunch of benefits coming up and when I get the details I will share them with you. One in October is for John Tunoose (?spelling). He just recently relapsed after 3 1/2 years and is now in Boston for a bone marrow transplant. Another is Johnathan Moore - 6 year old autistic child with leukemia. Chris went to school with his Dad. His is Nov. 12th at the Knights of Columbus - not sure of the time yet. Wow it just seems like it never ends! Before I didn't really know anyone affected by cancer, and now everytime I turn around I hear of someone else I know! Keep them all in your prayers.
I will let you know on the blood tests!
We have returned from vacation and had an awesome time!!! The picture above is Owen and our five year old cousin Dejah. Both are the big heroes! Dejah’s father Bobby and I have each other a big high five on the boat watching our 2 survivors out on the tube. Wow what a moment seeing them both together and enjoying life again after what they have been through.
Mr. Shy Jake was not shy at all, you would think he had known everyone his whole life. He especially loved Grandma Faynor - or Grandma Finger as he called her. He had so much to show her and tell her!
We were just go go go for 9 days. I think we were all ready to go home (well except Owen he wanted to stay for a couple years). We arrived on July 28th, and had a bbq in the back yard at Uncle John’s and Aunt Claudia’s. They boys even made it until 10 (1am our time). But unfortunately their clocks were not turned for the morning and they were up by 7!
Our first day we were off to the indoor playplace by Grandma’s. It is a huge play area with all sorts of mats, tunnels, ball pits, ball shooting guns, and so much fun. The kids ran for a few hours inside this maze of mats. Tyler couldn’t even wait for us to pay, he was off and running!!! Back to Uncle John’s for the night. The vancouver bunch arrived Friday evening. It is so great to see everyone and so glad you all came in for us – we LOVE it!!!! A game of Dodge ball was in the making. Owen thought this was sooo cool, and can’t wait to have a game of it at the Kolczynski reunion.
Saturday we were off to the Beach. We went to a smaller lake (not the Okanogan) about 40 minutes away. The water was so clear and blue it was beautiful. We had a big family party and picnic. The day was spent on the boat tubing, water skiing, swimming, relaxing, and for Jake a day of sand and chasing ducks!! What a great day. We wrapped up again at Uncle Johns – they are the social house while we are there, it is the easiest place for us all to descend, they have the yard and room for the whole gang. We celebrated Uncle John’s and Dwaynes birthdays.
The next day we were off to Cousin Dwayne’s house. They live about 30 minutes away, up the mountain. They have an awesome back yard… made for kids! The kids all put on an AC/DC concert for us… what a riot. They had the guitars, drums and moves galore. Tyler got right into it. Dwayne even put sparklers out around them to put the finishing touches on it.
Monday was a lazy day, it is a holiday in Canada but for the vancouver bunch it was a day of travel. Well for Bobby it was a day of travel I believe his companions Bruce and Connie snored very loudly the whole way from what I hear. Dwayne, myself, Owen, and Chance (Dwaynes son) headed to the Go-Carts for a ride. The boys were not tall enough to drive the big Carts by themselves and they didn't want to go in the slooow little carts. So we went double. Had a little trouble at first getting used to the car and getting through some traffic but then I was off, caught up to Dwayne and chance and it was a neck to neck fight to the end. Each corner who-ever had the inner corner went ahead, and luckily we had the last inner corner and were the winners!!! My cousin Jia showed up Monday evening at Uncle John's which was a HUGE surprise as he wasn't suppose to make it. He is our expert mountain climber/ skier. I haven't seen him since Tyler was just a couple of months old at Grandpa's 80th birthday party celebration. He was only there for the night, but it was a great surprise.
Tuesday we thought it would be fun to take the scenic bus tour aboard the double decker bus, along the water. We ventured downtown, plenty early for the 1:30 bus. But it never came, we waited and waited and with 7 kids at a bus stop that is not an easy task. Finally the 2:30 bus came but it was not the double decker. We called and found out there had been an accident and all traffic was backed up so the double decker was not going to be coming… bummer. So we ventured into a near by museum. It had a few things to keep the kids interested, a dinosaur display, some indian houses, and things. All went well until the gift shop was found… time to go… we wandered down to another museum but the only thing there was a huge train display which was quite amazing. Back to Uncle John’s for dinner, and then Home to Grandma’s. We thought it would be nice to get the kids to bed early and play some Hearts there that night. Of course we had to make several phone calls to Uncle John before he came… could you bring cards… could you brind beer… could you bring……. I think he quit answering the phone. I ran them twice that night, even on a hold hand which still boggles Uncle John!
Next day we were off to the Okanagon lake and city park. Dwayne and Vicki were meeting us there after work for one last time on the boat. Poor Ty was so excited about going on the boat again, but fell asleep before Dwayne got there. Owen was in his glory back on the tube. Even Jake gave it a try. He only lasted a little while but was very happy on the boat watching everyone else. By the time we came back in for round three of pickups.. Tyler had woken up and was very excited to see us. So back out to give Tyler a turn. He just loves it.. grinning ear to ear. Back to Uncle John’s for dinner. We brought the kids home and Gloria and I walked back to hang out and play some cards. Well I think everyone else was burned out. We almost got Cressy to stay, but she has a one year old was ready to go. So Gloria and I hung out in the back yard catching up and swapping hospital stories. Next thing we knew it was 2:00!! Gloria then thought how we should have gone out on the town since it was just the two of us.. but too late. Nevermind it was cheaper and much nicer getting to just visit with one another. Thanks for a great night Glo!
Another quiet day. The kids were thrilled to just hang tight and play playstation. Later that afternoon we went to Mission Park just to get some outdoor time. Just Owen, Ty, Jake and Dejah went. We then went out for ice cream and back to Uncle John’s. Had a big ‘good-bye’ dinner and said our sad goodbye’s. We won’t be back for two years now. Hmmm maybe them Canadians should come here???
Off to sleep… the alarm is going off at 3:30, our flight is at 6am. We are hopeful the airports are a bit easier going home. Coming down customs, security, everything was a bit hectic with the kids and we had pounding headaches by the time we got there!!!!
It started out well. The kids were all awake and ate breakfast at the airport. Glo and Uncle John came with us to help with the kids and get us off on our way. Thankyou for the help! The first flight was uneventful. In vancouver while we waited, Tyler ate pancakes since he was the only one who didn’t eat in Kelowna. Then we had some play time. Much to my horror tyler had an accident – his pullup leaked a very messy mess (#2). I had to clean that up and get house keeping and tell them – oh so sorry!!!! Hurry up and change Tyler because guess what we are boarding. So much for uneventful. Then we arrived in Toronto. We had to take a shuttle to the US terminal. Well the airport assistant stopped us from getting on the shuttle as it was too full and told us to wait for the next… which when it pulled up we hopped on, he said nothing, and this shuttle was for the international flight not US. So we were way over on the other side of the airport. Not mind you we only have an hour. Luckily a nice airport employee, got us a personal shuttle back to the correct terminal so we didn’t have to take two (one to the main, and then to the US). It was a long hike from where the shuttle drops you to were you actually see anyone, we were getting nervous we were on the wrong path again. We then had to gather our bags and stand in the long line for customs. After that it was along hike down to gate R. We finally make it at 17:55, our flight is 18:05, thank goodness they were running behind so they hadn’t loaded yet. We bought the boys dinner… chips from the vending machine, and it was time to load. Finally all loaded and safe for the final leg. Mom looked at me and asked ‘Where is Pooh’ – Tyler’s beloved Winnie the Pooh! He must have put him down when we gave him the chips. There was nothing to do. The pilot said he would put an inquiry in (would he?). I did call lost and found but no Pooh bear ever showed up, I am sure he was tossed. So far it has been okay. Whenever he asks, I tell him he is on the plane and he puts his head down and pouts but nothing major.
So yes we are home!!!
We had our Kolczynski family golf tournament and reunion this past Saturday. Our biggest turn out yet – 52 golfers!!! The party after was at our house, and I think it was fun for all. The weather held out for us, a bit muggy but the kids didn’t mind, they were in and out of the pool all day. We even managed to get some bocce and volleyball in dispite how hot it was. A friend brougt fireworks ( and very good ones at that), so we ended the night with a bang so to speak!
On the health side:
Owen had several bloody noses in Canada all in one day. He also has a wasp bite that is not healing so I wanted to have him checked. I took him for a blood CBC, but haven't heard the results yet. He goes to Strong on the 29th but wanted to have this done ahead of time. Today we went to the Auburn Double Days game, it was the buddies night - Owen's baseball team gets to run on the field with the baseball players when they are introduced and for the national anthem. When he got back to his seat we went and got a slush. A couple of minutes later he told me he was cold, he lips were shaking! At first I thought it was from the slush, but he just kept getting colder, so we left. He had a fever when we got home (101) and within 40 minutes he was at 102.3! So he took so Tylenol, which did bring his fever down but he said he just ached all over. He is in basketball camp this week (which the kid who hates to run absolutely LOVES) but tomorrow he will be home, until I am sure he is better. At 11:00 last night he was still 100.3
I wanted to share with you one more thing. I had a woman contact me. A friend of hers son has the same rare leukemia mixture that Owen had. (AML and ALL) She found Owen on the web and had a lot of questions. I have been emailing her and watching John’s web site everyday. He was originally treated with chemo alone, but relapsed. He had a bone marrow transplant yesterday. So all of you were so great to us, I am hoping you have a prayer or two left in you to help them through this. The boy John, is in low spirits having already gone through months of treatments. I have include his website in the links below, so check his sight and leave him a prayer and some words of wisdom if you would.
Thankyou and as always we love you all for your support and continuing to think of us.
Yes it has been an extremely long time! Just wanted to check in and say all is well. We are enjoying summer and are just way too busy. Owen just finished his baseball season - they ended up winning four games which was great, and a couple of the games were very close. Owen is one of the 'top' guys on the team now, the ages are 5-8. However him and the other 8 year olds are not what you call baseball stars! Owen is the social butterfly and loves to go for the fun. He is going to stay in this league next year too since he doesn't turn 9 till the end of may he is eligible. He wanted to move up, but I talked him out of it, because he just would not play in the next league and that would make him discouraged.
He has taken the summer off from Karate - summer is just too busy. I don't know how we would have found time to go. It has been a very HOT summer and we are using the pool alot. What a huge difference this summer in Owen's swimming from last year. He is able to dive for the rings at the bottom of the deep end, and swim the length of the pool underwater. He would get so tired last year after just a short time and now he is in there for hours at a time. Looking back at pictures from last summer - he was skin and bones and now he is a healthy little boy again!
We went to seabreeze water park for a day - all three!! Theres a sanity trip for you! Actually they were very good. We went with a friend and her 2 kids, one is Owens age and the other is a 13 year old girl so she was wonderful in helping with the little ones and she just loves them.
We live at the ice cream store, although haven't gone much lately, haven't wanted to leave the pool! We are leaving Thursday to go to Kelowna, British Columbia to visit family. So it is going to be a HUGE celebration in that Dejah will be there too, who has just finished all of his treatments for the Wilms tumor!!! What a wonderful feeling to have them together again and for all of us to give each other that big hug for all that we have been through and seen our children go through. I will update you when we return so you can see 2 healthy little boys who carried the world on their shoulders!!!
I told her I didn't want to be the paranoid mother, but Owen got bloody noses the winter before being diagnosed, and he had them this year. He also had strep several times, and now this is the second time for that. I said we just had his blood tested the end of Feb. but things are just too familiar. She asked me if I wanted a blood test, I asked her if I was being too paranoid.. Again she said 'Do you WANT a blood test?' I said yes. She smiled and said that is all you need to say. She said she will order me a blood test as often as I want, I don't have to go to one of his leukemia doctors for that, she can order me a test as often as it makes me comfortable. So that is great!!!
Owen continued to feel awful and throw up all day thursday and friday, and pretty much slept all day. Friday night came, and he finally snapped out of it and wanted to eat! And he ate a lot! Saturday morning he was very hungry again. He ate breakfast and took it easy. I decided we would go to religion class. He got in the shower at noon, and got out throwing up!! So no class for Owen. I called and I will have to go get all the material and we will need to do the prep class at home. Owen seemed to feel fine the rest of the day, and was running and playing by later afternoon. As he started to eat dinner, he got sick again. But he came back and finished his dinner. So hopefully he is finally clearing up. Thankfully this only hit Owen this hard, the two little ones seem to have skated right through it!
We have received some terrible news regarding a friend of ours. I hope they don't mind me sharing it with all of you. You have been a HUGE support for us and I would love to have your prayers go out to her and her family.
Kelly-Green-Lipiska has been diagnosed with Adult Acute Myelogenous Leukemia (AML). She is the wife of Tom, and daughter of Marty and Roberta. She has two very young children. Many of you may remember June Lipiska, Toms sister who recently lost her battle with cancer. I would love you all to say a prayer for Kelly and her family. She is being admitted to University today to start treatment and will be there for a month. According to her docs, she can go into remission and will be on a maintenance program to keep her on remission, but there is no cure. She is on a list for Bone Marrow Transplant if it gets to that point. Owen had both the AML and ALL, and bone marrow was the best chance for him to be cured. However the battle to get there is a long hard road and the Lipiska's need all of our support.
The doctor told him he needed to be real honest with him, and he would be honest back, he was a doctor that believed in telling everyone everything. So he asked Owen if he 'ever picked his nose' Owen smiled and said yes. He asked if his bloody noses usually occurred after, even if it was awhile later, once he picked his nose. Again a smile and yes. So he feels between that and just the tendancy to get bloody noses when the air is so dry in the winter that there was nothing to worry about. He wants us to switch the soap we use 'Ivory', because that is the worst for causing dry itchy skin especially in the winter. And to start using a mild lotion on Owen. The aches in his bones could still be from the leukemia and all the treatments and will eventually go away, or they could just be growing pains. He said Owen and us have been through alot and there can be physicalogical issues. He doesn't see Owen has having a problem but if he has a lot of sleep issues we may just want to talk both Owen and us to the social person at syracuse next time we are there, as they have one on the doctor floor. We have met her before, but it seems like most of his issues have started in the last couple of months. We go back to Syracuse this month so we will do that. I had already explained to Owen about talking to someone about his fears and he said 'you mean a therapist'! Yes Owen a therapist. He was fine with this and wants to. So we will do that. The doctor also asked if Owen played alot of video / computer games. Well yes...he lives and breathes video games! So he wants us to cut way back on the amount of time Owen plays them and which ones he plays. He said that they have studies now that show kids do not 'turn off' the games when they go to sleep. Their brains keep working at solving the games or their dreams become a part of the scenario they were playing and thus not a restful sleep. Much the same in adults if they are worried about something, or thinking about their jobs, or an ebay auction that is going to end... it makes for a restless night. Makes a lot of sense. So to Owens horror he is losing alot of games he plays and alot less play time so we can see if this is part of his sleep issues. He wakes up nearly everynight with a nightmare and comes crying into our room. He asked Owen if he was worried about the Leukemia coming back. Owen said yes. He asked if he was afraid he would die if it did. Owen said yes. So he told him that he couldn't promise him that the leukemia would not come back, but he was not 16 months past his transplant and the chances are way down of it coming back. But if it were to come back him and the doctors in rochester and syracuse would do alot for him with medicines to stop the leukemia again just like they did before. So he wanted Owen to promise him that he would let the doctors worry about the leukemia. They would watch for it and fight it and Owen did not have to stress or worry about that. He asked Owen if he could trust the doctors to do that and for him to stop worrying about it. So Owen agreed he would try to do that.
After we talked to the doctor we had to go to the lab for our blood work as they were short on staff that day. So down to the lab which was packed. It was not 10:30. At 11:15 I asked the lab how much longer and they said at least 30 more minutes! Wow wish they had told his it was going to be so long we could have done something besides sitting in the waiting room! So we did go up to the 8th floor- the Bone Marrow Transplant floor for a visit. Gerry who is the nurse receptionist and screens everyone before they come in- did not even recognize us. Of course my hair is short now and Owen has hair! She said 'May I help you?' I said - well we are here for a visit, do you know this guy? She took a second look and her mouth dropped. Mike the social worker on the floor was there and he turned around with a big 'Owen!' None of the nurses that took care of Owen were there. Some familiar faces that were there and remembered us but none of Owens 'buddies'. They said they all remember Owen running around the nurses station playing hide and seek. They took Owens picture with a couple of the girls so they could hang it on their wall of pictures, for the other girls. So that was a good visit and wow brings back memories! Back to the lab. We finally got in at 12:00 and had several tubes of blood taken for a detail analysis of his blood.
Much to Owens delight, I said he didn't have to go back to school. By the time we got back it would have been 1:30 or later and so I didn't see much sense. So we called Aunt Susie who lives in rochester and she met us at Owen favorite restaurant 'Bugaboo Creek' where there are all sorts of wild (stuffed) animals, that talk and move. We had a great lunch and headed home. We got home at 3:30 to relieve Papa Fred who was watching the other two. They had been in their glory to wake up to Papa, so they had a free for all and lots of fun!
Doctor called me yesterday to tell me all the blood work was back and looked great, absolutely nothing to worry about! Just keep an eye out, and continue to write down any concerns. He doesn't want up to not be concerned about things, and brush them off. Better safe than sorry, and blood tests can be done anytime. I said I feel like we are all going to be hypocondriates and spaz over every little thing, not just with Owen but any of the kids. We see a bruise and our hearts stop. Which is all normal and hopefully someday we will settle down, and I think we have calmed down a lot but somethings just scare you more than others.
Other than that we have been having nothing but fun. Owen and I went skiing a couple weeks ago. Owen was glad to be back on the slopes! Hopefully we can get back over there before the snow goes. We were going to go last monday as they were off from school and I was off from work, but it was a freezing ice rain. So instead we packed up and went swimming at the Skaneateles community center. Jake and Owen had a blast, but the water was cold and Tyler would have nothing to do with it! We started swim lessons Saturday. Owen needs to drop back a level. He needs to repeat the one level he had passed when he was 6, they had moved him up, but he missed last year, and swimming in our pool isn't the same as he is mostly jumping in and playing in the shallow end. So he was fine with that because he was exhausted after his lesson.
Chris and I are off to New York City next week with Dad and Leanne to watch the Big East Tournament. Go SU!
Just wanted to touch base and let you know we had a little scare. We went to an elderly home on Saturday to play bingo for a church community service. Owen had fun and us adults had a few laughs. But I looked over and Owen had a bloody nose starting. I got him cleaned up but my heart just drops to see that... memories... he started with alot of bloody noses the winter before they found he had leukemia. It was like 90 degrees in the home though so I thought okay, its dry and humid that could be why.
The next day we went to the Strong Museum in Rochester. It is a big museum for kids where they get to pretned play. Owens favorites are Wegmans. He gets to go shopping and then ring up his groceries on a 'real' cash register and scanner. Then he was the baker and made all sorts of cakes and breads. His next favorite is to be the weather man. You actually get to see yourself broadcast on Tv with the weather map and all. It was a fun fun day. On the way home he got another bloody nose! We got it stopped and then a little bit later on the ride it started again! Okay now I am beginning to panic. I called the doc the next day and we got him in for blood work. Everything is FINE! They say some kids are more sensitive to the humidity and heat from being indoors in the winter and Owen must be one. This is the same thing I was told the previous winter when he got them alot. I am still nervous over this because I don't remember him getting any last winter when he came home from the Hospital.
He got another bloody nose in school yesterday. So if it continues I will get him in to the doc and have them do some further testing. I told them I don't want to be the paranoid mother but history repeating does a number on my nerves! We do go to the docs on the 28th in Rochester and they will be doing a detailed analysis on his blood again.
So it seems everything is fine. I am swabbing Owens nose with vaseline to help keep it moist and see if this helps.
Our other 'exciting' news is we now have a pet lizard! Thanks to Uncle Steve, he took Owen to the sportsman show and this is what they returned with. Owen said Uncle Steve asked him if I would mind and of course Owen said 'No'. Just like Uncle Steve - ask a 7 year old if he can have a pet! Well he's not too bad, we have to feed him live crickets, so that means taking care of both the food and the pet! He will only grow to 8 inches so that is a relief. His name is 'Spidey', what a surprise. Jake absolutely loves the 'baby dinosaur'. He even let it go once when Owen forgot to close his door. I walked in and Jake was holding his aquarium and said 'Momma, where did baby dinosaur go?' Hmmmm great question! We did find him in Owens closet, and he was very happy to go home... who knows what Jake tormented him with before he had escaped to the closet! Oh the fun never ends!!!
I'll keep you posted!
As you can see everyone got rollerskates. Owens are 'free-wheelin' so he has some learning to do but he is very excited. Tyler loves roller skating, and it was new to Jake but he seemed to take right to it. Yes their wheels are locked, especially Jake, because he'll be running in no time. :-)
Owen got an interactive spiderman game from Santa, he wears these wires and then he is spiderman on the TV, so whatever moves he does, spiderman does. At least it is a video game that makes him move! He also got a Real Meal oven, so he is cooking his own snacks! He got the new batmobile with an interactive TV computer in it, so he can interact with games preloaded or interact with the cartoon on Saturdays. Tylers favorite was a singing Christmas tree. His old one broke from carrying it around so much and playing it year round... so he is in his glory. Jake got lots of dinosaur stuff, and he is a miny Godzilla as he tromps through the house. Ty and Jake got a big wooden train set. They LOVE this, but we may have to put it up for a while. I have glued it several times, but when the dinosaurs tromp through the bridges, even the strongest of glue has crumbled. Needless to say the grandparents rolled in after that and.... well it would take the rest of the week to detail all the goods!
We have been busy having fun. We went to the indoor waterpark. Owen passed the swim test so he was able to go in the big pool too and use the diving board. Ty just stayed in the water park with me. We didn't take Jake this time, poor Jake, but since Ty was so good I will venture out and take Jake next time too.
We went to lights on the lake - a big light show of christmas lights. They extended it a week, with all proceeds going to Tsumami. Jake was thrilled. He kept singing Frosty for us between squeals of delight.
We went to see Disney on Ice on Saturday. It was a great show, Tyler grinned from ear to ear from beginning to end. Jake was up and dancing . Owen was more impressed with the souveniers.... sorry Owen we are here for the show.
Owen started getting a sore throat over the weekend.. on and off... but Sunday night he was really complaining. Of course school was the next day so we have to feel him out... but when he got dressed for bed I noticed some small pin prickly bumps on his chest. He made sure he told me to tell Grandma in the morning that he wasn't feeling well.. because she might not believe him! I said if you didn't call Wolf so much she would! Well morning came and a very sickly looking Owen appeared. No school.. off to the doc. He has strep. So he is off tomorrow too. He is feeling a little better right now, but he has taken 3 naps today. So doesn't look like anything to be concerned with.
Well we are not even having winter yet. The weather all over the country is weird, floods in CA, snow galore in Nevada, and nothing here! We want to go skiing!! Of course they make snow, but I like the real stuff, its not so icey. It is suppose to be in the 50's by thursday.
Owen doesn't go back to the doc until Februay 28th in Rochester.
So other than getting ready for Christmas things have been quiet. Lots of Christmas party though so it is very exhausting.
Owen had a checkup yesterday and everything is fine. They took blood, but we won't know for a few days on that, and then only if there is something to say, so hopefully no news! Seeing that we had the detail blood work a month ago I am not realy concerned that something will show. Owen has been fighting some sort of viral infection for about 6 weeks now. He seems to always have something. He has gone from diahrea, to a cough, to breaking out in hives, and then round and round we go. The pediatrician did finally put him on a 20 day antibiotic just to try and get rid of whats in him but they do believe it is viral. He only has a few days left of that. Yesterday the doc said he did hear a wheezing in his lungs and gave him albuterol inhaler. If this doesn't get rid of it he wants to get some xrays just to make sure he doesn't have bronkitis or pneumonia brewing. Owen is all thrilled with the inhaler and can't wait to do it everyday!! Plus oh my I must tell you this! He takes his antibiotic all by himself.... yes you heard me right! Wow have we come a long way to an hour of fighting to take medicine!
There was a family therapist at the doc yesterday and she was just talking with me on everything we went through and how we are feeling. She asked how it felt to come back to the docs now. I told her I actually LIKE to come to the docs every few months. It is my 'comfort' visit to let the docs check him over and make sure they don't see any signs of anything. You get secure sitting home and not having the million doc visit and meds and it is nice to get that sign off from the doc that 'yes everything is okay'.
So now we are just going to sit back and enjoy the holidays, a far cry from where we were a year ago. One year ago today we had only been home a couple days. It is the anniversary of the HUGE snowstorm on Owen's benefit that so many of you braved to give us your support. Here we are a year later, and appreciating everything everyone did for us and for where we are now.
Happy Holidays to you all - I will check in after the new year with you all!!!!
Owen no longer has to take ANY medicine. Major plus for Owen! He also can start getting re-immunized for all his baby shots. They will be contacting our peds doctor to give them a schedule for what he should get and in what order. He did get the flu shot on monday - he was not too happy about that - but I sure was.
He will be hitting the one year mark tomorrow (11/4) for his bone marrow transplant! His 1st birthday as a new kid. He is all set to have a big party and presents! Well I think we will have a celebration but not to that extreme. So his chances of relapse drop dramitically now. There is still a chance but the first year is crucial. Did I say how happy we are right now!!!!! He does keep getting a rash on his chest that comes and goes, along with dry itchy eyes. This can still be a sign of the Graft VS Host disease where his and Jakes blood are fighting. But as long as it continues to be mild it is not a concern and is actually good. They took blood from Owen and will do another detail blood analysis to determine the ratio of his blood to Jakes. Last time in May it was 5wen and 95ake. So we have to hope it stays at that or Jake has even taken over totally.
The syracuse doc doesn't think we need to continue doing bone marrow testing unless any problems come up, which I was very nervous about. I just want to stay on top of it in case of a relapse. But the rochester doc thinks that is fine. He is going to see us ever 4 months and will do the detailed blood analysis which he says will actually tell them the same thing, with alot less invasion on Owens part. This will still keep us up on relapse, if we see Owens blood ncreasing they will do more testing. We won't get the results back for a couple of weeks.
Halloween was alot of fun. We did the usual trick or treating at the grandparents, but this year Owen asked me why we didn't go to other houses like all the other kids...
Okay its time to start I guess. So after Dad's house we went to Mr. Jorgenson's (Owen teacher) and then parked the car and walked to houses there. They live on a busy (and good) street. We did about 8 houses and Tyler was done. But that was fine, it was a wet night and they were getting soaked walking through the grass. Tyler wouldn't even go to houses at first, he held back and let Owen get his candy, but after a couple he got in the groove and went right up. Jake on the other hand had no fear! He was right up there and saying trick or treat and even roaring for the people - he was a dinosaur. Tyler was Barney - 3rd year in a row, and hmmmm can you guess Owen? Yeah he was batman!!! So lots of fun and too much candy but a great night.
I'll give you an update on the test as soon as I know!
T
Owens excitement started sky high early Saturday morning when a stretch limo pulled into our driveway to pick us up! His eyes grew big and he looked at me and asked if THAT was what we are riding in. Sure enough we jumped in - Owen didn't stop smiling the whole way to the airport. He thought we should definately get rid of the van and get one of those.
We met Lily and Deb at the airport ( our Make-a-Wish girls ) and Owen was just full of himself. He talked up a storm (surprise) and told them all the things we would do. They drew pictures and our wait to board the plane went flying by. Soon we were on our way…..
Wow beautiful WARM Florida… we were greated at the airport by another Make a Wish person who helped us get on our way. Off to the Give Kids the World Villa’s. We arrived a little after 8 and a party was going on.. It was Mayor Claytons birthday party. Mayor Clayton is a bunny who runs the GKTW complex. So after signing in and getting a brief overview, out formal one was the next morning, we headed out to the party. Owen jumped right up with everyone and started dancing away. We had cake and even goody bags to go.
Our next day started off busy as can be and we didn’t stop until check out on Friday! First we had to check out some of the comlex…We went to Amberville Station, it is full of toys, remote control trains, and a FREE video arcade room. Right up Owens alley. We had a hard time pulling him out of there. Then we played a game of Dinosaur minature golf, lots of cool things and water spraying dinosaurs around every corner!
Next we headed to Seaworld. We got to see the Shamu show, and feed, touch the dolphins, and even feed Sharks! Yes they were little, or you would not have seen me anywhere near them! We went on the Atlantis ride, a BIG water log ride and that was awesome. We decided to head back a little early to get some dinner before heading to the Magic Kingdom Halloween party.
The Halloween party was from 7-midnight!!! They had a bunch of trick or treat stations set up around the park, a few rides were open, and of course the Halloween parade. We did manage to get out around 11, we could see Owen starting to get tired (he’ll never admit that) and so were we. Owen crashed on the way home!
Next day we were up bright and early, to Amberville for a few games, breakfast and then off to Animal Kingdom. We had a great day there, we just love that park with all its animals and cool buildings. We even got grandma Pat to go on the river ride. (Owen had to cry) But Grandma was glad she did, it was a lot of fun and not to scary. We headed out to Downtown Disney next for some dinner at Rain forest Café (Owens favorite). I have to admit I love it there too. We played in lego land for awhile too. Then home exhausted, ready for bed.
Wow we are up early again!!! How does he do it! If we were home we would have to drag him out of bed!!!! We decided today we would slow down a bit, yeah right. We went on an air boat ride through the swamps. We saw lots of turtles, and birds but only one alligator. We barely saw him, another boat had spotted him and flagged us, put as we started to pull up he scooted off in the water. We tried to get Owen to put his fingers in the water, maybe they would think it was chicken and appear, but he wanted nothing to do with that. He thought Grandma should do it because she was the ‘real chicken’ since she doesn’t do rides! We stopped at Pirates Cove on the way back to the villa for a game of minature golf. The minature golf courses are really neat down there, but I guess if you don’t have snow 6 months of the year you can do that! Back to the villa and down to the pool. We went to the bigger pool ( there are 2 on the complex) and there was a water spray park next to the pool too. So we played in the pool and ran through the water park for a couple of hours, so like I said this was our relaxing day!
We packed up and headed to MGM in the late afternoon. We watched the Indiana Jones show, so now Owen is totally infatuated with Indiana Jones, the stunts were really good though. We had to do the Tower of Terror that is a given. Chris wouldn’t go, he is still scared from when we went 8 years ago!!! Owen’s face was frozen the whole ride. His eyes were as wide as can be and he was clenched tight to his seat. I was so busy laughing ( I know not nice) that I didn’t have time to be scared. Owen still says he wasn’t scared, he just didn’t like it when you passed the window and could see out and how high you were. I have the picture of proof though! We made it out of there in time to see the Fantasia show. What an awesome show!!! The lights the fireworks, lasers, floats…. I video taped the whole things it was just great. After the show we headed for dinner, and then home to bed.
Surprise up early again. I mean he is up at 7-7:30 every morning and we aren’t getting home till 10:30- 11:00! Today is the big day, going to Universal and seeing Spiderman. We had to go on the spiderman ride right away. Well we had to go on it TWICE, right in a row! It was a cool ride, especially when we were web-swinging through the city! Owen thought Grandma could do it, yeah right she has vertigo! Next we had to get our face painted like spiderman. We went on a couple more rides then it was time to wait for Spiderman. The whole gang was coming, Spiderman, Captain America, Wolverine, Storm, Rogue, and the Laser guy (we don’t know his name). They were great, and welcomed Owen and were just super friendly. Spiderman thought Owen was his backup – he looked so real! We talked for a bit and then they were off to fight crime. Owen did ask Spiderman to go on his ride with him, but he had to decline, he said if he was riding, who would be the real spiderman to save the city?? Good point. Next we were off to some water rides. We were smart and wore ponchos on the ripsaw water ride (log ride) we saw people getting off soaked. But then we weren’t so smart and went on the big tube water rapids ride and didn’t think we would get too wet, since we didn’t at animal kingdom… wrong, there wasn’t a dry spot to be found! We had to stop back and get the spiderman face repainted before we could continue on, and one more ride on Spiderman! The rest of the day was a blur of rides. Daddy’s stomach isn’t what it use to be, he was very scared on the majority of the rides. Not me and Owen!!! We are the ride maniacs!!! Although Jaws made Owen a little nervous. The park closed at 7 and they basically had to kick us out. We headed out to dinner and then late home again.
Hmmm…. What time do you think Owen got up? Yep… We went over to Amberville again for some more games, then to the Castle of Miracles. Owen got to sign a star that then gets mounted up on the castle ceiling so there is a momento from every child who comes! We went for a ride on the carousel out side the castle, and then breakfast and on the road again. Today is Epcot. We did a lot of rides, and even Grandma could do a lot of these… they are scenic sloooow rides but very interesting. We decided we wanted to take a tour of the Countries on the back side of Epcot – much to Owens horror – all that extra walking and no kid things! So we gave in and made a compromise, he got a stroller and could ride, we got to go around the world. Not bad. It was very interesting and the buildings, food and entertainment was well worth it. It would have been nice to linger longer but we knew they would meet a lot of protest, since it was his trip, and there was so much to do yet. We finished up with the fast rides, Test Track ( a racing car ride) and Mission Space ( a simulator of taking off in a shuttle), I even lost me stomach a little on lift off. We had to finish up because it was pushing 7 and Owen wanted to hit Magic Kingdom again for Space Mountain and Splash Mountain because they weren’t open at the Halloween party. Guess what, they are at opposite ends of the Park!!!! Most of the parks were not very crowded, but Magic Kingdom was a zoo, so the race through the park was not easy, but we succeeded and hit both rides and were on our way out to eat by 8:30.
Even though our days were long we accomplished a lot each day. Owen was treated like royalty everywhere. He wears a special badge that shows he is from Give Kids The World, and the parks give you all sorts of perks. We were brought to the front of the ride lines, got free pictures, free food to feed the animals, free face painting, …. Everytime we turned around they were doing something and saying it is for Owen. How fantastic!!! The village had surprises and gifts for Owen everyday waiting at home when we arrived. Lots of activities go on everyday for the kids although we missed them, due to our late night outings, but they leave a news letter to tell you of all the activities going on through out the day. We could have stayed at the village everyday and not run out of things to do!
We were up early again, but we needed to be today, because Barney and friends were coming to the village today and we just had to get pictures for Tyler and Jake. Speaking of Tyler and Jake… we had our moments when we felt bad they weren’t there… but they would have never dealt well with those long days. The to call home….. well they were at there own Disney Land. Papa Fred and Grandma Lea were letting them live it up. Leannes nieces were over quite a bit and that was just a free for all!!! I asked Leanne if they had even been told the work NO once. She said ‘Yeah I have told them a few times, but then they just cry “Papa” and run to him, and they get what they want’ My work is cut our for me now!
Are you tired yet? Well we are ready for R&R in Tampa!!! We were actually in Indian Rocks cove which is just past St. Petersburg. We stayed with my girlfriend Lori and her husband Dave. They knew we were ready to chill. We hung out on the dock and fished. Every afternoon we would head to the Ocean and watch the sunset and swim. Aunt Lori had a treasure hunt for Owen. He got a couple of clues everyday, and on the last night at the beach it led him to a buried treasure!!! We tried to ‘boogie board’ but it is a lot harder than it looks. I got the bright idea to jump on the board on my knees instead of standing. Well I missed the board and my knee scrapped through all the shells in the sand!!! Ouch… why do I still think I am a 16 year old jock? We bought a cast net and would catch our own minnows for bait, it was getting expensive buying the shrimp, which the fish seem to be able to pick clean. The fish are very smart down there! Some young boys on the beach were catching HUGE fish. I only seemed to catch minnows. They even caught sting rays! Owen and I followed them down the beach one night to watch them catch all the fish. Chris and Dave went to the Tampa Bucs football game and even got to see them win! Lori, and I hung low and went for a canoe ride around the inlet they are on. Owen was having down time and watching TV, wow first time all of vacation!
Well all vacations have to come to an end….. back to home and the rain! We were driven home again in the limo. Owen beaming the whole way… he still thinks we should get one. Tyler and Jake were beside themselves to see us. I was very happy to get my little guys back too!
I can’t say enough about what a wonderful trip it was and I can not thank the Make A Wish foundation, Give Kids the World Village and the parks for all they do for the kids. Owen was a very healthy kid compared to the majority of kids there and was able to do just about any thing. But each and every child there had a permanent grin on their face and you knew this was a dream come true. We actually met another little boy who also had a bone marrow transplant. He had it 3 ½ years ago and was still having the Graft VS Host disease reactions. He had the splotchy hair, the blood pin marks on his face and was very weak. They were amazed with Owen, but I guess they were unable to find the perfect match as we had. You just never stop realizing how lucky we are, and have been, and how much we have to be thankful for.
Thankyou Thankyou Thankyou everyone for making Owens dream come true!!! He IS in the process of writing thankyou notes to the many people who made this all possible. He realizes what he gift he was given.
I will keep updating with pictures of our vacation… and of couse Halloween is just around the corner…
We do go to the Rochester doc on Monday. I am going to find out about Owen getting re-immuninzed for all his baby shots, and for his itchy eyes he seems to keep having. I also want to ask about the little boy we met, because along with being thankful for how well Owen is doing, it also but some fear back in my bones! The what ifs….. I also need to find out about whether we need to continue the bone marrow testing. I hope they say yes, I would feel much more comfortable doing that for another year. I know I have been long winded ….. but I hope you enjoyed it!
Tyler is doing just super. He had a rough couple of days after he was in school for a few weeks. He just would not get on the bus. He was screaming and clinging and just plain hysterical. There was no way we could put him on like that. So we brought him a couple of days, and then he kind of grew back out of what ever triggered him to not want to go. He is doing a lot of sounds and counting and really seems to like it. We practice counting poker chips and have a counting ruler card and he is just very eager to do it, so that is great!
Jake is enjoying being an only child. He goes to library school on tuesday mornings with grandma, and then just lots of one on one and fun times otherwise.
We went to Old Forge last weekend. It was a good/bad time. Owen had gotten sick at school that day. His throat was really bothering him. So we had to make a pit stop at the pediatricians to have him checked out and get the okay to go still. The nurse saw some white spots in his throat, but strep was negative. She thought his ear looked like it was getting infected so she gave him an antibiotic and told us to have fun. Well the nerves start going as I ask 'Should we go, or what if....' Well we decided to go, Utica hospital would only be an hour away, so no more than what syracuse would be if we were home. We got up there at 6:00 and had a good time settling in and having dinner. (My mother-in-law, sister-in-law and nephew were there also). But later that night Owen and Jake were running fevers. Hmmmm why did we come! Next morning everyone is great. We fed the ducks that came right up to our deck. They were taking the food right out of our hands! Then off to the beach and playground. The kids had a blast playing in the sand and building sand castles. We headed home that afternoon for a little quiet time. Then we headed off to the Inn right down the road for some munchie dinner since we had a late lunch and the kids played video games and danced to the music playing. 8:00 hit and so did the fevers! We headed home. Owen started just sobbing with how bad his throat hurt. It was a long night! Finally got everyone settled down and got some sleep. Jake was up at 6am and just miserable. Needless to say the whole house woke up. I packed up and hit the road. We made a stop at the docs on the way back and the kids had the 'Hand, mouth, foot disease' She said it is VERY painful in the mouth and they probably wouldn't eat for a few day. Fevers would start to go away but home rest for a few days.
Owen went back to school today and was very glad to go back - it is so boring at home. Jake seems to be back to normal too. Their mouths are still a little sensitive to some foods (tomatoes) but are pretty much back to normal.
Sunday is the Buddy Walk for Down Syndrome Awareness. We will be off to that and very excited to have Owen with us this year!
Then in 2 weeks we are off to Florida!!! I say that like I am excited but that is only if these hurricanes will stop coming!!! Hopefully they are finishing up and will let us have the very anticipated vacation.
I probably won't be writing until we are back from Florida and will fill you in on all the fun stuff we do!
Take care and thankyou all for continuing to think of us!
But anyway his blood looks great. He has some discoloration of the skin on his face but the doc isn't concerned. Just to make sure we keep that sunscreen on in full force. We don't need to go back now for another month, and then November we go to Rochester.
Grandma Pat, Owen, Jake and myself went to the State Fair today. Tyler stayed home and had a papa Fred day. He doesn't do well at those sorts of things. It is over stimulating and he gets very miserable and set in what HE wants to do and there is no deviating. We started out in the animal barns. Jake loved the cows. He had a little temper when we left that barn until he saw we were moving right on to the chickens and roosters! He crowed with several of them and thought this was a pretty cool thing.
Of course we had to do the midway. Usually we only buy a book of tickets from Wegmans and when they are gone they are gone, because they charge too much for the rides. Most rides take 4 tickets. But we had free ride all day tickets from Fucillo's, so that went extra ride time. We did make it out with just one lap around, Grandma, Jake and I were tired of it. Owen would have stayed all day. Now that is a surprise.
Jake crashed as we were leaving the midway and looking for a place for lunch. I looked back and he was sleeping sitting up in the wagon! I laid him down, and he stayed sleeping but as soon as we stopped for lunch and was grumpy! So I took him for a little stroll and he crashed right back out. Then we got to rest a bit for lunch.
After lunch we headed to the sheep and pig barns. Jake woke back up and loved the baby pigs. He kept rubbing them saying 'baby'. But after that things started to get ugly. We headed to the buildings and the kids were not impressed. Owen use to love to go through the buildings but not today, and Jake definately wasn't into it. So we headed back to the bus and called it a day.
Tomorrow is Tylers Kindergarten orientation at Jordan Elbridge. Grandma Pat is going to go to, since she will need to know where to go etc. if she has to pick Tyler up for anything. I am getting excited about him starting Kindergarten. I was real nervous, and kind of down with him not going to Cayuga. But now I am just excited he is going. I think this will be really good for him. I don't know how well he will deal with the full day but he will adjust.
So one more week till the real start date for Ty and Owen. I am not even a stay at home mom, but I AM READY for them to go back. Owen is soooo bored if he has 5 minutes without somewhere to go or someone over. Tyler needs his structure, it just isn't the same at home. And finally Jake needs some one on one time. I think he is lagging a bit in his speech for being 2, so some one on one time will benefit him too. I am sure I am not the only parent welcoming school back :-)
Talk to you all soon!
We got the 'new and improved' water slide in the mail the other day so the kids have been busy on that. Ty and Jake only like sliding on it when it is dry, but I don't imagine it will be long before they venture down with the water. I told Owen it is starting to look like an amusement park here with all the stuff they have. He just grinned from ear to ear.
He had one of his best friends Thomas' birthday party this past weekend and spent the night. They had fire works and all there, how exciting. Come to think of it Owen has been home to many days! Yesterday he went to Angela's house to play all day. I think if he is home for more than 2 hours he starts complaining how bored he is and needs to go somewhere or have a friend over. His friend Dan came over the other day and they set up a car wash. They washed all the outdoor toys and my car! That was a great idea!!!
Well school is approaching fast so we are starting to dust off all the cobwebs. Owen has to do 4 school things aday. Whether it is reading, writing, phonics, spelling, math or some otherthing. He is kind of upset because on his mad minutes (doing as many math problems in 5 minutes as you can) he hasn't done well. He is suppose to get 90 or more. He is averaging around 75. I told him that is why we are starting now, so he can get back in the grove and be ready for school. His reading is still great, but he has been reading all summer, and he likes to read everything in site. Then there is writing.... hmm I think it is a little better, depends on how much he pays attention to what he is doing. He is distracted quite easily, probably because he doesn't want to miss a thing, and then he is skipping words or writing letters backwards.
Owen wants to start taking karate, so I am going to call on that. It will be good for him, keep him occupied and it also teaches discipline. As long as he doesn't use it on us or his brothers!
Well enjoy the rest of summer and I will keep you posted on any news!
Owen has developed a rash on his stomach and back. I took him to the pediatrician to check it out. She didn't feel it was anything but being that Owen is who he is we need to keep an eye on it. The only thing different we could think of is I used a different sunscreen on him. I did call Rochester just in case because I thought of the Graft VS Host disease that is still possible. The first 100 days after transplant he could have a reaction with rejecting the new bone marrow (acute graft vs host), then from 3months to a year he can still get a different version of it, that is called Chronic Graft vs Host. He has no other symptons of it though except we have found a gray hair! This can also cause premature graying. However rochester didn't think we needed to do anything yet since he wasn't showing anyother symptons ( fevers, vomitting, stomach or liver pain, dry eyes, itchy rash) Owens rash doesn't itch, it looks more like bug bites but he has lots of them! They wondered if he could have been exposed to chicken pox, which remember he can get now, he is no longer vaccinated against this. But the pediatrician didn't thin it looked like that. He doesn't have any in his groin area or under his arms. So for now we watch and wait.... Our doc in Rochester is leaving for Atlanta, Ga so we will be sorry to see him go. We won't even get a chance to say good bye as we don't go back there till November and he leaves this month. As I said though we had him when we needed him and we ARE NOT going to need him anymore right! The other docs there are great too so I have no worries there, but we will definately miss Dr. John. Owen had even made up a song for him while we were at the hospital.
I took Tyler to the docs on Tuesday for his Celiac Disease testing. He has come back negative! Yeah... all this great news... I don't know how to handle it! If Tyler had it, he would not have been able to have any flour/gluton foods. So to Tyler thats everything ( pancakes, oatmeal, spagetti, FRENCH FRIES...) I did get Tyler a large order of McDonalds Frenchfries to eat on the way just in case it was the last. He had to be re-tested in 6 months, and if that comes back negative he will be tested yearly. He has to be monitored because of the down syndrome and the high risk of developing it.
Myself, Owen, Tyler, Owens friend Thomas, and cousin Nicole all went to Seabreeze, a water / ride park last Friday for family day for my job. What a great time. It was Tylers first time going. It started out rough with Tyler screaming everytime we got to the bottom of the water slide, or the end of a ride, until the light came on that we were indeed staying and he could keep on going on things. I thought it was going to be a very short day, but we ended up staying until 8:30 that night. Even Thomas went on the roller coasters, he never goes on the rides. Tyler went on everything he was big enough to go on and loved it, except the springer which you sit in and it raises you up several feet then drops you real fast. He was all happy when we got on and then after the first drop he kept signing and saying "Done, Done, Done" poor thing, but I couldn't help but laugh. Everytime we walked by the ride I would ask him if he wanted to go on and he would say no. Then Mr. ride himself Owen, couldn't say no to any ride. He loves them all. He would have stayed till the park closed!
Saturday is our family golf tournament / reunion so another fun filled day. It seems like we are going everyday! Owen is going to Darien Lake for 3 days in August with a friend. We had wanted to go to Old Forge for a day and Marine Land, and of course the State Fair but summer is running out fast. Well what is "suppose" to be summer. I am still wondering when our summer weather is going to get here!
So heres to alot of great news for us and we are soooo happy, it feels like the big break we have been needing. Now if I could just control my husband.....
Well I would like to say things have continued to stay quiet... but I guess it has been to long. Before I make anyone nervous.. Owen is fine. He is being Owen, having fun with friends, playing baseball, he is in religion class for 2 weeks and just enjoying life. Yes, Mrs Vasquez he is doing LOTS of reading AND writing which we know he definately needs. He has homework everynight and is doing other reading as well. We went to Syracuse yesterday to meet with the Make-A-Wish people. (See photo on this page) They have granted Owen his wish to go to Universal! He was so excited, they told him all about it... well not everything, we have to have surprises when we get down there. They did tell me (not Owen) that he will be meeting Spiderman, how cool is that! We will have our own townhouse place and be going to Universal, and they have a "Halloween is not so scary" nights going on at Disney where they close the park down and just the Make-A-Wish families will be there. We will definately be enjoying this! They were a big hit with presents galore, all right up his alley-- Hulk backback, Hulk puzzle, Spiderman cards, Spiderman sprinkler, Batman gloves, hmmm do they know Owen you think? We stayed for a couple hours and Owen would have stayed longer, he was having fun playing with Deb and Lilly. Thank you Thank you for everything Deb and Lilly you are so good to us, and Thankyou to the whole Make-A-Wish corporation!
Oh did you want to know what the excitement was? Well it was my youngest child... Chris!!! We had our chicken BBQ this past weekend. We have a big chicken pit in the backyard, similar to what the fireman use. (Before I go further alcohol was not even involved but he is polish!) Well Chris got the fire going and wasn't happy with how it was going. So he poured gas on the fire...nothing still fired up.. so he reached in his pocket pulled out his lighter and reached in. My brother Steve said when he realized what he was doing he said - Dude I don't think I would do that... Whoof up in flames Chris went. He beat the fire off him. He said he was fine, but wanted to jump in the shower right away. I was in the kitchen and knew nothing. When he came in I smelt the burning hair, I turned around but his back was to me already and he very calmly told me as he walked upstairs that he did something stupid and got burned and needed to jump in the shower. I didn't think much of it he was so calm and went on my way puttering. Well 30 minutes later he wasn't down yet so I went up and said are you okay? He shut off the shower and pulled it open. I thought I would freak. His face was all red, his neck was already blistered and his arm was swelling, all the hair was gone from his arm. He said he needed to stay in the shower longer because he was still burning up.
When he finally came down we were all trying to convince him to go to the hospital, but I think we already knew his answer. He wasn't going, he felt he wasn't that bad and they wouldn't do anything anyways. I called the pharmacy and they said he needed to really keep it iced and then later could apply an antibiotic cream to it. He hung out all day but was very good about keeping ice on it. He took alot of abuse all day though... he took it in stride though. Sunday he woke up and was ready to go to the doc. He was sore. The doc said he did a great job getting the dead skin off in the shower and keeping ice on it. They gave him a prescription cream to put on. He has to go back tomorrow. His biggest worry is infection. They classified it as 2nd degree. He had alot of oozing today on his face and losing alot of fluid out of the sores. I have a hard time looking at him because it turns my stomach! Jake is afraid of him. He looks at him like he knows the voice but that is NOT his Daddy. He won't go near him! Poor Daddy! We need to just lock him away in a box, he is a danger to himself!!!
The only good thing about all this is hopefully that will be the end of bad news here, he took care of that so everything can continue to go well!
Friday Owen and I went up to Rochester for the afternoon. Aunt Susie was having a memorial for a very special friend who passed away last December of cancer. Aunt Susie and Mona raise shelties and show them. Their was a dog show that day so it was perfect for all of their friends to be in town then. We missed the dog show, came in right as most people were packing up, but we went to the restaurant. It was a beautiful, all the pictures the memories people shared and seeing a lot of family we haven't seen in ages. Owen ditched me, and stayed with Aunt Shelly and Grandma Bonnie and of course PJ. They were spending the night there, so I drove home alone, but had a nice night with Ty and Jake.
We had a great July4th weekend. Just too busy. The kids loved the fireworks. We watched them at Uncle Don's house which is very close to the foot of the lake, and got to see a great show! Tyler was nervous at first when it was still daylight and other people on the lake were shooting them off, the noise bothered him, but at night - he was all smiles!!! After the fireworks we went up to a friends camp, yes this was at 10:30 at night with the kids. They were just returning from watching the fireworks on the boat, with their kids and friends. We cooked smore's on the fire and the kids all had a grand time playing. Finally at 12:30 Ty curled up in my lap and was out in 30 seconds so we packed up and headed home.
On July 4th - we watched the parade! The kids had front row spots at Aunt Anna's and gathered up all kinds of candy. Owen went down to the field days for awhile with Megan, it was just too much for the other 2 and too many people. Owen said it was bad enough, he only got 2 rides in an hour because of the lines. The boys were running out of steam so we headed home. Chris and Owen headed back out to Billy's camp for his party. They had a blast. Owen was fishing, tubing, swimming and loving it. Good thing those tubes came out or there would have been no swimming in the lake!! Ty, Jake and I spent a quiet day at home. We rested and watched a movie for awhile, they needed down time. Jake had dozed in the car so there was no way he was going for a nap!!! Then we went swimming and played cars.
Monday - whew we made it!!! This was a stay at home and catch up on home things we had been putting aside all weekend. We got the grass planted around the pool, the chicken BBQ pit re-done for the BBQ this weekend, and alot of just relaxing with the boys. We drew a whole city on the driveway with chalk. The boys loved driving on the roads.
No news to report otherwise. Couple weeks till we go for the bone marrow. I did have a little scare the other day. Owen was racing back to the car after his baseball game. The passenger side was on a hill, so when he went to pull the door open, he didn't have a good hold and slipped, down the hill he tumbled! He lay there screaming "my ankle, my ankle" My heart just dropped I felt like it was the broken arm and the start of it all over again. I picked him up and put him in the car, got his shoe and sock off. I kind of moved his foot around, and asked him if it hurt, he said yes but it was a pretty quiet yes, so I figured if it was broke he would have went through the roof when I touched it. So we headed for home and some ice. He asked as we were pulling out if we could stop and get pizza. I said what about your ankle? "Well, my hunger overtakes my pain." Thats my Owen! We did stop and get pizza of course.
Hope everyone is having a great summer!!
He went strawberry picking with Papa Fred and Aunt Anna after school. I believe he ate more than he picked, but luckily Papa picked a bucket full for us!
Today we went to Owens cousin's 4th birthday party. PJ and him ran and played all day with barely a break. I can't tell you how wonderful it was seeing him laughing and running and just being Owen. We got looking at some old pictures they just got developed, some were from Halloween, decorating cookies. There was Owen with no hair and you heart just dropped. Then you looked up and saw he run by having the time of his life and you thanked God for having him there.
Recently a little boy named MATTIE STEPANEK passed away from a rare form of Muscular Dystrophy. Our prayers go out to his family as they have been through a very tough life with all of their children having been affected by this very same disease. Owen was sitting in the living room when Good morning America was going over his life. Mom said he looked at her with the biggest eyes, and asked if he was as sick as Mattie. Mom said she just crumbled, but was able to tell him no, he was very very sick, in a wheelchair and always on oxygen etc. and that he always knew he was going to die. Owen seemed to accept this and went on his way. You wonder how much he does think about his sickness and how sick he is and if he worries about it. He usually doesn't say much about it except in passing as in "when I was sick" so hopefully he isn't scared emotionally by it.
Happy July 4th to everyone, and happy Canada day too ( which is July 1st for all you americans that have no clue what I am talking about) We don't know what are plans are yet, but Owen can't wait to see the fireworks this year. We missed them last year as we left on the 3rd to go to Canada. This will be Jakes first time of seeing them so it should be interesting....
Happy holidays, be safe and have fun!
They have scheduled the bone marrow for July 26th. Since we just did a blood exam they decided to push it off a little bit farther.
Owen has one more week of school. He has 2 full days on monday and tuesday then 3 half days. Tyler has 3 more days. Then grandma will have her hands full!
We went swimming last night, well I say we, I mean the 3 boys, Daddy and one of Daddy's friends. The water was still too cold for me (75) I like it at least 80! The nights are still quite chilly so it just doesn't seem to be able to get up to there yet. But the boys had fun, I didn't think we would get Ty out. Jake just liked running around and throwing the ball in and then yelling for someone to get it back out for him.
Tonight we finally got to go see Harry Potter III. What a great movie. I am lucky to be the movie person, for Owen. Even if he goes with someone else, he is always willing to go see it again for me! We were going to go to the driveins to see it and then changed out minds. Good thing since it started pouring at 9:00 when the drive in would have started.
Tomorrow Owen has a baseball game and then 2 birthday parties. We will really miss the first one, just make a quick appearance at the end because it is the same time as his baseball game. I guess I can see why he might be getting so tired.... We may have to cut back, and choose some of his things to do, so he doesn't get burned out. He has totally normal counts but we still don't want him to get run down, that opens the door for him to get sick and even though his immune system is back to normal too we don't want to let his body have the chance to contact anything that will run him down.
Happy Fathers day to all you Dads out there, and remember to give your kids lots of hugs and kisses because they are very very precious!!!
He didn't want to take his tux off. he thought we should buy it so he could wear it all the time! Maybe when you aren't growing quite so fast....
Strong memorial called with Owens detailed blood work. It all looked fabulous!! His CBC (complete blood count) are all well in the normal range. His immune system are all in normal range also. He will still have to immunized for his baby shots again but he is looking great. I will talk to the Syracuse doc more about that at the end of the month. They are waiting until the end of June to do his bone marrow when he is out of school so not to disrupt these last few weeks since he is not having any problems.
He has been tired the last couple of days so we will keep an eye on that. Of course it could have to do with his busy schedule! We went to see Shrek2 with Tyler and Grandma Pat. That was soooo good, even for us big kids! He had his first baseball game Saturday. He had a couple of hits and RBI's. We bought him baseball spikes and are working on his running on his toes not flat footed and he actually is looking a little better. Monday he went with Grandma Pat to Strong Museum. He was the weather man, (hope he is bringing us some good weather), a cashier, an announcer, a baker and so much more. He had a blast.
Chris, me, Tyler and Jake were off to Edmeston, near Cooperstown with 2 other families to visit Pathfinder Village. It is a down syndrome community. It was beautiful! It was different than we thought. We had thought it was a community that the Down syndrome residents ran the bakery, restaurant,...etc. But it is really a group home with school and everything. They prepare the residents with life skills, schooling and a home life to prepare them to hopefully go out on their own one day. Alot of the adults do go into town everyday for their jobs and then come home later in the afternoon. There is about six people living in each house. The place was just immaculate! However I don't see us ever putting Tyler there. We thought it would be neat to see, but I can ever see putting Tyler so far away, I would rather he be close to home but hopefully able to live on his own. Who knows what the future will bring any of us!!!
We are busy getting ready for our Garage sale next weekend. Whew it is a lot of work!!!! And I am just cleaning out the basement of all the baby stuff, toys, and more. Owen is busy cleaning out his "old" stuff that we don't want to save for the other boys. He has high hopes for all his money he is going to make. We'll see, but I can tell I already have to control his prices!
This weekend is the Union Springs prom and Owen is Crown Bear! So we have to be there at 11:30pm. Hopefully I can get Owen to take a nap on Saturday so he is ready to go for his big night. I will be sure to take lots of pics!
Well insane or not, we brought Owen and four of his friends back for the sleepover. Believe it or not it went very smooth. They got a little out of control when they got out the boxing bop-it gloves, which were immediately put away and brought everyone down to a calm level again. They they were super. The played great. Then we wound down around 11:15 to play a game of Harry Potter, it is a game like trivial pursuit but it is all Harry Potter questions. This brought us to midnight and Bed! They all slept downstairs on the floor. I put in Haunted mansion, and within a half hour we lost two, the other three needed a midnight snack and then they were sound asleep too. They got up around 8:30 the next morning and were immediately dressed and outside to play. They came back in an hour later to eat breakfast and then..... they wanted to go swimming! I told them the pool was only like 70, which in pool water that is cold! It wasn't even hot outside maybe 65, but kids are kids, so in they went. They had a blast but even they admitted it was very cold and only lasted about 15 minutes. Tyler tried to go in, but as soon as he got past his knees, he pushed off the stairs and in he went, he came up with his face in horror! He couldn't get out fast enough.
Owen went hunting with Uncle Steve Sunday morning. This time he carried his gun. He told me it was HEAVY and hard work. But if you want to hunt that is part of the job right? They only saw a hen, which Owen told me you can't shoot in the spring because they are having babies. They think they have it figured out where to go next weekend. We'll see.
No word on the blood tests yet, so I'll keep you posted.
Speaking of birthdays, his other birthday is coming up too. May 22nd. He is having a kid party this Friday at the indoor water park/pool in Skaneateles. I have never been there but it sounds nice. He is soooo excited. We tried to go there last year but tried too late. Then he is having four friends spend the night, whew this should be interesting!!!
Owen has started baseball practice. He thinks he is sooo much faster this year with his batman sneakers, although we think he still has a few piano's dragging behind him. He was racing Jake in the yard tonight, and it won't be long before Jake can beat him!!! They are so different. Owen is laid back and no rush, and Jake is 90mph all day long.
Owen has been Turkey hunting with Uncle Steve on the weekends. He absolutely loves it!! Up at 4:30 am. He jumps right out of bed and is ready to roll too. They haven't caught anything yet but he is still thrilled to go. He said Uncle Steve calls him "Turkey replellent", might have something to do with Owen can't stop talking long enough for any turkeys to get close. Doesn't matter, Owen loves it and Uncle Steve loves taking him. Although he put his back out carrying all there stuff - both guns, chairs, the turkey blind.... I said why don't you have Owen carry his stuff. Well Owen told him it was too hard, and poor Uncle Steve was taken right in. Got to learn not to let Owen pull one over on you Steve, but you have to give Owen credit too!!!
I have been checking schools for Tyler. He starts kindergarten in the fall!! I can't believe it. We have a few options on what to do. I looked at both the Union Springs system, and another smaller classroom in Jordan Elbridge. We have to go to a meeting on May 19th. It is a group of people from the school, his current pre-school, and other committee members to discuss his options and what is best for Tyler. We have had these meetings to decide on his therapies and what things he needs since birth since he is special needs. It is a great thing and it is always nice to hear other peoples inputs on Tyler as we don't see everything, especially with him in school.
Chris had another accident. He was opening up the pool, and when he opened the chlorinator he was blasted with some heavy fumes. Apparently there was a little bit of chlorine left in it, with a little water and this makes a very heavy fume. He was having trouble breathing and was having bad chest pains. I called poison control. They told him to get lots of fresh air and liquids. If it didn't get any better he needed to be seen. He did lay down for quite a while before he started feeling better and it wasn't until this morning that he was back to normal. He said it really scared him, he had been ready to call 911!
I guess things had gotten too quiet around here and we needed to shake things up again!!!! Well I'll let you know as soon as I get Owen's blood results, until then lets enjoy this weather!!!!
We are playing ring-a-round the rosie with sickness here. Jake started with the ear infection and croup. Then last Saturday I took Owen in, he had a very sore throat and had no voice. He ended up having strep. He started to get better but then his voice took a real dive and he started to cough alot. I took him for a chest xray to make sure it had not gone down into his chest. But thankfully that was clear. By this past weekend Tyler was gushing at the nose. So now he is on an antibiotic.
Owen woke up yesterday with his throat really hurting again. Back to the docs. But the strep test came back negative, his glands are real swollen and his throat is red. The doc thinks he probably got a viral infection on top of the strep and that is why he is still so sore and his voice isn't better. Nothing to do at this point. Hopefully only a few more days. He had just gotten back to school when I got a call from the school that a child there had Fifth disease. It is a bacteria that ends up turning into a rash all over the body. Unfortunately the child is most contagious the week before the rash develops and you don't realize they were sick. The problem is it can be dangerous for children with blood disorders or leukemia. It is compromising to the bone marrow. So I called mom who had just walked out from the school, and back in she went to pull Owen out. The doc said he probably wouldn't worry so much because Owens counts are so good, but the fact he is fighting his own infection right now he wants him to stay home for a few days.
Poor Owen, he cried all the way home, he doesn't want to be sick anymore! This is "TV off week" also so no plopping infront of the playstation while he is home. I told him it is a good time to get some reading done, or to go through all his toys to get ready for our garage sale. He is really excited about selling some of his toys for $$$. I have to calm him down though he is all set to charge these high prices so he can get lots of money. Sometimes he is saying he will charge more than what it cost!!! I told him no one will buy it for those prices.
This Saturday is opening Turkey hunting, so he has been practicing with Uncle Steve and can't wait to go. He went last year and had no problem getting up at the 4am!! Hopefully they will have better luck this year. Uncle Steve is hoping his voice is still hoarse because Owen doesn't do to well at being quiet!
So things are pretty quiet with some mild issues but we can live with those! No doc appt until next Thursday when they will do a detail blood analysis.
Have a great week!!!
He was up at 7am ready to follow the egg trial to the goodies. We had a very nice morning with visits from Grandpa Fred, Grandma Lea, Papa W, Grandma Lee, and Great Grandma Mary. I then took a break from cooking this year. We went to Grandma Bonnies for dinner. Aunt Susie, Aunt Shelly, Uncle Pete, Pj, and Grandma Pat were all there. So I only had to chase Jake aroung all day, so that was like chasing 12 kids!!! But all in all we had a great day. By 8 o'clock the kids were ready to drop, actually Tyler had crashed by 5:30.
Today we went to the docs. Everything is looking great. I asked about Owens teeth. He has not lost any baby teeth in so long. Chemo and radiation can cause problems with the teeth. The doc said they just probably delayed his permanent teeth. They will come, and not to worry about it right now. I told him we are hoping to go to Florida and Universal mid-may. He said no problem with that, and he would give us a note "just in case" we have to go to an ER, so we would be brought right in. But to go enjoy a very needed vacation! Now we just need to get Daddy's butt in gear and get exercising more so he will be ready to go. That gives him 5 weeks to get up and going. I really want to go now, and not disrupt Owens school next year by taking him out, and summer in Florida is just too hot. Plus Chris will not have been back to work long so I know he will not want to take time off again. We are going to make a decision by the end of the week.
Well hears to a happy and healthy week off from school. Hopefully the weather will get a little nicer. It is suppose to be cold. We really want some outdoor time. We went out last Saturday and by the time we came in I couldn't tell if Jake was a boy or a mud ball. He still came in kicking and yelling to stay out longer! He is definately my outdoor boy!!! Yeah I finally got one!
Cousin Dejah is HOME so it was a great holiday weekend for all!!
Talk to you soon!
Owen went to school for a full day on Friday. He was so excited and had been bugging to do it. He did fine. Mr. Jorgenson asked him if he was getting tired and needed to go home but he wanted to stay. So I guess we are back to school for real now. As long as he is handling it we are going to let him stay. Of course Owen had a thought... he would stay all day until he got tired of it that he would take some time off. Hmmmm... No- you are back not on a personal preference schedule. Always have to give him credit though.
Owen had a good weekend. He had a bowling birthday party on Saturday, then off to the movies with his friend Josh - ScoobyDoo, and then he spent the night there too. Josh came back to play on Sunday for a while. Then Grandma showed up and took him to the movies to see Home on the Range. Quite the boring life huh!
Tomorrow we are headed to the Easter Bunny if everyone is feeling up to it. Jake is cutting all 4 eye teeth and is not in the best of moods. I took him to the doc today just in case I have been blaming his irratibleness on his teeth for several days and he really had something else brewing. But nothing so far, just a cold and teeth.
Cousin Dejah is having a rough time, so if everyone could throw some more prayers and wishes his way that would be great. His surgery was over 11 hours and he had to have more yesterday for fluid in his lungs.
As always we appreciate all of you and your continuous support and prayers!!!!
Sunday we got to play outside - Yeah!!! How nice was that! To see the sun and it was so warm, just what we needed to perk us all up. Owen went hunting with Uncle Steve in the morning. He was on cloud nine when he came home. He got to shoot his 22 and shot gun! As long as Uncle Steve is careful and takes him I can live with the hunter in him. We went to Papa Fred's and Grandma Lea's for Grandmas birthday. First the boys helped to make papa nice clean white deck a nice mixture of brown. Then some games of tag and hide -n- seek. Mr. Jorgenson stopped by to say hello and gave away Owens hiding spot. Thats okay though Owen can never stay quiet long enough for us to find him anyways!
Owen returned to school again on Monday. Let's try this one again! He already wants to stay later, so starting tomorrow we are increasing his time to 1:30. He is soooo excited that he will be staying for lunch, he loves school lunch!
After school we went to the Syracuse docs. We had to go for blood work first. They only needed a little bit so the lady asked Owen if he would rather have a finger prick or the needle in the arm. He said the needle in the arm, they don't hurt him at all anymore. What a brave boy!!!! He's got me beat. Everything looks great, so its back to trying to fatten Owen up, and work on his muscle strength.
We went for Easter pics today. These will double as Owen's school pics too since he never had them. I will post them as soon as I get them, I forgot the disk.
Our cousing Dejah in Canada was having his Kidney surgery today to remove the Wilm's Tumor. He was going in at 10:00 and the surgery was to last 5+ hours. We haven't heard any news yet (they are 3 hours behind us). So if everyone could say a prayer with us for Dejah and his family for success and a speedy recovery. He's a tough little guy but a little extra thought his way can't hurt. His website is posted below for anyone interested.
The doc visit today was great. The doc couldn't believe how great he looked. It has been a month since he has seen him. All the nurses were saying the same thing. He said it was a good thing to remove the tubes, they were about due to come out anyways. He felt bad that Owen had to get so sick, but the fact that it didn't wipe out his counts, and that they are rebounding back to normal so fast is a great sign. They didn't take blood today since we just had it done tuesday and will again in syracuse on monday. Owen told him it would be okay because he is not afraid of being poked anymore.
He said there is no reason for Owen not to return to school. The infection was totally related to the tubes. I showed him the name of the bacteria and he agreed that it was not anything that he could have caught from anyone else. So back to school on Monday!!! That is so awesome. We will start out until noon again, and see how soon we can increase it. Owen has taken a nap both wednesday and today. He wants to stay later, so I said we would play it by ear and see how he did at the beginning of the week.
Tyler is back to normal, seems to have just been a quick bug. Unfortunately my mom also seemed to get it. She went home sick yesterday, with a fever and throwing up, but is feeling better today. She had today off for some extra R&R, she needs it, Papa Fred came and took care of Ty and Jake (at McDonalds) while we ran to rochester.
Owen's next doc appt is monday in syracuse for a quick checkup. Then we are done as long as we run into no bumps until the 12th in syracuse and May 6th in rochester. He said they are not going to redo the bone marrow as they had orignially thought. The fact that he recovered nicely from the mono, and his counts look fine now means it wasn't the leukemia and they will wait to do it. He said on the sixth they will run some more extensive immune system tests on his blood to get a better idea on where exactly his system is. He said he will have to have ALL of his immunizations that he had as a baby again. Although some might have come over from Jake, not enough to protect him. We will not have to do this until he is about a year post transplant.
So heres to a quiet weekend we hope!!! Well except for -
GO SU!!!!!!!!!
So they have an oral antibiotic he can go home on. He is still pretty wiped out and is taking naps, having headaches etc. but he is quite perky compared to how he came in. he was out of bed and playing monopoly yesterday for a couple hours. he slept most of the afternoon and then was awake a couple more hours before going to sleep for the night.
They had to replace his IV at 1 am last night because his hand and arm were just so swollen from the IV fluids and they were just leaking out and wouldn't even go in anymore. His "wife" Brooke did it so that made it okay, he was very brave.
Tyler is sick at home, he has had diahrea and is very lethargic, but then he will perk up for a bit, and then go back to not feeling good. So now comes the trick of keeping them separate. But at least I know what Ty has is not related to what Owen has. Owens counts have come back up, his white blood cells are normal, his platelettes are still low, but are coming back. He still has several days to recooperate and get back on his feet.
His face is so swollen from all the fluids they gave him Saturday night. His eyes are barely open and he has no chin, cheeks or anything, he is just this mass of fluid. He is so good though. He started running a fever again, so we were getting tylenol for him, but he had to go to the bathroom. So he looked at himself in the mirror, and asked me if after he had tylenol would he be able to see better. If I had saw myself looking like that it would have freaked me out, but he just took it in stride.
He was awake on and off during the day, but for the most part was not feeling well. He did kind of perk up around 6:00 and play some playstation for a 1/2 hour, then he just watched his roommate play. Yes we are rooming with another PS2 junky. I said that to Owen and he said 'Mom, PS2 is not junk'. So Papa is going to bring some 2 player games up today and if Owen is up to it they can play together.
He did get out of bed around 8 and took a quick tub, he got cold real fast so we didn't want to linger. But after his tub he asked me if he could have some toast and butter. You bet bud! this is the first time he has eaten since we got here. After the toast he ate some fruit loops out of the box. But then a little bit later he threw it up. We don't know if it was the food, or he had also just finished his antibiotic through his IV and that can make some kids nausaus. He just finished another dose now this morning so we'll see how he handles it this time.
His face has gone down alot by this morning. He looks practically normal which is so nice to see. You would never of even known it was Owen yesterday. My mom walked in our room looked at him and turned around and left thinking she had the wrong room! The docs should be up this morning so if they have anything else to offer I will let you know.
Owen woke up crying friday night around 10:30 and was just trembling. He didn't have a fever though. I brought him to our room and put the electric blanket on him, but pretty soon he was throwing up. He continued to do this like every 20 minutes. After the initial throw up it was more dry heaves as he didn't have any thing left. When I took his temp again he was 102.9!! I called the doc and he had us come right over.
They decided right away to admit us, he thought it could possibly be this roto virus that is circulating because that causes high fevers and vomitting. After getting all is blood cultures done the tylenol went in and he started coming down in temp. He actually even had a popcicle and was talking a little bit. We got up to the room at 6 am and totally exhausted we both slept till 11:00.
Saturday he never really woke up. He was lethargic all day. His fever had returned and was 102. They gave him tylenol, and then started some more antibiotics. Well within an hour his fever was up to 104, the tylenol was not working. After talking with the doc we felt it might be his tubes that were infected. I had cleaned and flushed his tubes at 9:00 friday night and then he was sick an hour later and now after they were accessing them his fever shot even higher.
So since he doesn't really need them anymore, he is only getting blood draw once in a while we deceded to get rid of the tubes. It was bandage changing day so Owen was kind of glad and sad about it. They told him he could keep his tubes if he wanted so that made him happy. Well to take them out was nothing. They gave him a memory loss drug. he was totally awake and talking to us. After removing the cuple of stitches around the tube, they just gave them a good pull, and out them came. He hurt for a minute, but then had no idea that they had even done it. They put an IV in him to give him his meds while we are here and he didn't remember that either. It was really weird, he would be watching and talking with you then 5 inutes later say when are they taking my tubes out, did I already go to sleep...
We were moved to a private room, he may be contagious and for the fact he is needing alot of care right now. His fevers continued all day, and then he started with diahrea. His blood pressure started dropping so they started pumping a lot of fluid through his IV manually. It would bring his pressure back up, but in no time it had dropped back down and then had to repeat it. They have to constantly monitor him for his BP, and to make sure they are not over saturating his lungs at the same time. Finally around 2:30 am his pressure remained pretty constant and is still holding good now. He still has diahrea, and is really cramping. He just is so sad, and just lays there, he has absolutely no strength. Every once in a blue moon he will say something and it is like wow he talked! He is just so out of it, it is breaking my heart and scaring me.
The nurses are wonderful and are right there constanly helping him and monitoring him. He sometimes has 3 nurses all fondling over him and getting him the best care in the world, and I am so thankful for them, they are wonderful.
They still believe it is a virus but it is wiping his system out pretty good. His platelettes have gone from 188 down to 50. I will let you know as I find out anything, but keep him in your thoughts please. We need all of you!
Well I am back from Chicago, actually we were about an hour outside of Chicago, but it was very nice to get away and have a break even for work! But of course I missed my boys too and had to call home for updates.
Owen continues to do very well. His doc appt monday went great again. We got to look at the blood cells through the microscope again. He explained all the different looking cells to us, and it was amazing we actually could see differences once he started explaining them. Owen was asking all sorts of questions and what was that one that looked squished... and over there that one. I think both of us are going to become docs soon!
He wants Owen to start doing more exercising now, whether its moving games, dancing, jumping, up and down stairs what ever, he needs to start building his muscles back up. He looks soooo skinny and part of this is the weight loss which has really only been a few pounds but he has shot up a few inches. But some of it is because he has no muscle tone left because of the chemo. He has to brush his teeth 5-10 times a day to get his gums back in shape too because they are puffy from the chemo.
Tomorrow he has a dentist appt and he has to take an anitbiotic before we go. Four chewable pills an hour before so when the bacteria gets stirred up while cleaning his teeth it will help prevent him from getting any infections. That will be fun, four pills at 7 am. I can't wait!!
Our next appt is March 25th in Rochester, and then not until April 12th in Syracuse unless Rochester says any different. I'll find out thursday if they are planning to do another bone marrow any time soon. I am still anxious to have that done again, but I know as long as he has some mono cells still showing the marrow test will not be conclusive.
Thought I would update you all on hubby too. He is starting to get around a little bit. The doc is very happy with his progress so far. Chris can start putting 50 f his weight on his leg now. So they gave him a new way to walk on his crutches so allow him to do this. He has to do that for 2 weeks (down to 1 now) then he goes to one crutch and another way to walk to start building his leg strength up. So he is still pretty much house bound, but he does come out of the bedroom now and come downstairs a few times a day and eat dinner with us and stuff. Everyday he is feeling a little bit better but he does have days where it just aches most of the day.
What a GREAT day it was! Owen had been counting down the hours until this morning. He was up bright and early and just waiting at the door, "When can we leave?"
Well we arrived and hid in the office until they were ready for us, then we went over to the cafeteria to wait for the kids. They had a HUGE "Welcome Back Owen" sign, lots of balloons and everyone was wearing their Owen's Day shirts! They are so wonderful to us at school, Thankyou everyone, you are the best!
The kids filed in slowly and quietly at first, amazed at seeing Owen, then the chaos started. They surrounded Owen and were all talking and touching him and just so excited. They all started chanting "Owen, Owen". Oh how wonderful it felt to be there and seeing the kids just respond this way for him. They had cake and muffins, and just visited for a little bit.
Then Owen and I sat in front of everyone so they could ask us questions. I am so amazed at the questions they asked! How did we know he was sick, what did they do to him, how did they give him medicine, what surgeries did he have, did they hurt, what do his tubes look like, how do they work, when will they come out, is he all better now, what was it like with no hair, what was the hospital like, how do you feel now.... on and on. What excellent questions though! I answered most of them, but Owen piped in once in awhile to answer them.
Then back to class, and they actually were able to re-group and get to have reading class. I thought they would never get the kids to do anything today, but they all fell right back into place. Owen was yawning during this but he insisted he wasn't tired. I thought for sure he would crash this afternoon but he didn't. So we will continue to go from 9-11 for a week and then increase it to noon, and so on until he is able to do a full day. Hopefully within a few weeks to a month we will see that. It all depends on Owen.
Tomorrow is his first day on the bus. He is one of the last ones picked up, so it is a short ride for him. Then my mom will pick him up. I can't tell you how wonderful this felt today, for all of us. It seems like a dream, I felt like this day would never come. Even with his recent illness of mono, he has rebounded and we are finally able to have a little boy again! Wow!!!!
Now for the best news of all!!! Now mum is the word for all you parents who have kids in Owens multi-age class. We are released to go back to school!!! But he wants to surprise all his classmates so don't let them know he is coming. Owen says hecan't wait until next week he is just too excited. So we are going to start this Wednesday. I have ordered a cake, and Owen and I are going to make blueberry muffins tomorrow. Owen isn't a cake person so he wanted to have muffins too. Then we will be going to school on Wednesday. I am taking a 1/2 vacation day because I can't miss his first day of the first grade!!! He is just going to start part time at first and work his way up to a full day. The docs don't want him to get over tired and this will be a big change for him. He can take a timeout, or rest period at home but school is a little harder to have down time. So we will start with 1 1/2 and keep building on that. He was making up songs the whole way home about going to school. When the doc said he had to start small and work up Owen wanted to make sure he was there for lunch! Well I had to burst that bubble and let him know he wouldn't be there for lunch, so then he wanted to make sure he was there for specials (gym, art , music...). Although these are important I told him he needed to go back first for the class room stuff, reading, math, writing.. etc. So he didn't take it bad, he was flying too high that he is finally getting his life back!
I will let you know wednesday how the big day goes!
Back upstairs to see the doc. We brought back 2 slides for him to look at. Well everything is looking a little better. His platelettes are back to normal, and his white blood count is coming back down to normal, as well as his overall hemocrit. So it sure looks like it was the virus (mono) causing all the problems. We are going to go every week for a few weeks though to keep a good watch just in case... It can take a few weeks for the mono to clear. He said although Owen didn't get it as bad as some kids who are just so lethargic they can't even move most of the day. So he was doing a great job of battling it. Then once we are pretty stable again, they will schedule the bone marrow again. The doc said Owen gave everyone a pretty good scare. I think Owen was the only one not living on pins and needles there for a while! He hasn't had any fevers since thursday. Friday he got to 100, then Sat & Sun he was in the 99's so not enough for tylenol, and it stayed down, so looks like he is knocking this out on his own. Way to go O!
I asked about school, I said that before it was looking like mid March to start, but would this set us back? He said no, as long as Owen was feeling good, and the school gives the okay as far as the number of kids being sick, we are still on schedule to go back! So that is great news. Owen has been getting up real early lately, sometimes even by 6:00 he is strolling down the stairs, so he is getting back on the early times for school.
Owen is just starting to go up in his temp. Last night he started a temp around 8:00, and now at 9:00 tonight it is at 100. I am going to give him tylenol and off to bed. The doc said as long as the temp is the only sympton he has we can give him tylenol, but if he complains of anything else we need to bring him in for cultures. The mono will take a few more days to run its course. Then in a couple weeks we will repeat the bone marrow.
They did take some extra blood tests today and are sending us a kit to have Jakes blood taken so they can be compared and determine if the composition are the same and it is just Jake producing in Owen. So we are not out of the woods yet, but it seems like everyone is pretty certain the mono is causing all the trouble.
Keep thinking of us we need you all!!!!
Owen is sleeping right now, but as soon as he wakes up we should be ready to go!
I will update you on the bone marrow tomorrow, but everyone say a prayer for us and wish us good luck okay!
Owen is happy as can be. We have a little 6 year old girl in our room now so we played quite a bit with her last night, well until Brooke, Owen's most favorite nurse in the whole wide world came in. Then me and the little girl played and Owen remained a permenant attachment to Brooke.
I am probably not suppose to tell but.... Owen and Brooke got married last night! Gown and flowers and rings everything... except the photographer. Sure wish we had one of those for that moment.
I came home today to restock some clothes and see Tyler and Jake and Chris! Poor Chris he is just totally frustrated. Not only do we have to make sure Ty and Jake are okay, he needs help too, and he is not happy about that, or the fact that he can't be there. I tell him we are fine right now, no reason for him to be there, don't know what it is and Owen is feeling great! I sure am not ready for all of this agian. I am staying in good spirits, I am not going to freak out until we know anything.. okay I have broke down a couple of times, but am doing fine for the most part.
Type to you all again soon!
No real news yet. They will be getting a quick result test back later today on the CMV. The more detailed blood work is still being sent out. They have decided not to do the bone marrow today. They are going to wait and let Rochester repeat it on thursday.
They gave me a copy of his last 5 blook works. Last monday, then friday, saturday, sunday and today. His counts are not very stable. His white blood count went from 5.6 to 13 back down to 9.9. (4.5-13 normal). His platelettes are down from 107 to 79 (150 is normal) . And many other of the stats are doing the same thing. I asked the doc, and he just said to not worry, they are checking into several things and will let me know. The doc on the floor now is the doc we originally had when we were first admitted in august. He doesn't like to tell you much until it is for sure. Which is good and bad. But he doesn't like to go through a bunch of scenerios, or have you worry needlessly. But he did say we could probably go home tomorrow. At first it was today, but then he said we should wait for the test results they will get back today so wait until tomorrow.
Yesterday we only had one fever at 4:30. So that is getting better.
Owen had juggling lessons this morning with the child life specialist. They worked on some homework together and then had juggling lessons. Needless to say I spent more of the juggling time looking for the ball than watching Owen juggle! But as long as he is staying happy things are ok. He has made friends with a couple of little girls so that helps too.
He spiked a fever yesterday at 2:00 then again at 11:00. Today his eye lids are swollen. So the doctor says all of this seems to be pointing to either EPV (mono) or CMV positive, which is similar to mono. He is 110 days post transplant and this is a time when the CMV usually will appear. The blood work they took to check for both of these is unfortunately out housed so we will not know the answers until probably tuesday. They don't want to start any meds for either of these until they know because they are treated with different meds, and the one med for the CMV does nothing for the EPV and will actually bring his immune system down a little so they don't want to do that.
Even though Owens immune system is not normal he does have some and it may be enough to fight these on its own. He said his white blood count came down a little which shows he is fighting the infection and that in itself is a good sign because if it were a relapse they would start going up,
So we still don't know anything for sure but we are breathing a little easier. An infection is a whole lot better than a relapse!!!!! So it sounds like we will probably be here for a few more days.
Owen is in great spirits though. We are playing Disney monopoly now with another little girl. They took a break to make her mom buttons because it is her birthday, so I thought I would catch you all up.
The doc talked to Rochester and they decided they wanted us to stay until they got the cultures back. His liver is swollen and this could be because of a viral infection, possibly mono, or even the leukemia. We finally made it up to our room on 7H at 2am!!!! They told us we would be staying over night at 9:30, owen and I were both crashed on the ER bed when they were finally ready to move us.
No news yet this morning. The cultures are coming back negative so far. They are going to take some more blood and run some more tests specifically for several liver functions. They can not tell us anything yet, whether it is leukemia related or not. Hopefully they should have some news later today. We might stay the weekend and they will repeat the bone marrow here on monday.
Owen is in good spirits and having fun being back here. They have an XBOX now, so thats exciting! Mom is here and they are playing monopoly now. But so far he hasn't minded coming back. he had a couple moments in the ER last night where he started crying and wanting to go home but that was late and he was exhausted. he asked me "What the heck was going on with our family? First he gets sick, then Daddy breaks his leg, now he is getting sick again." I wish I knew Owen, I wish I could put our family back in one piece!!!!
So we need your support and prayers to get us back home again! Please be thinking of us, you are all so wonderful and it helps us to know we have everyone there for us. I will keep you updated as I can.
Owens fever continues to run on and off. It seems to get worse at night. Last night he got up to 101.8 and it took the tylenol 40 minutes to start bringing it down. He acts normal for the most part unless his fever is spiking then he gets grumpy and has been taking a nap everyday. I talked to the doc on wednesday and he told me to just keep giving him tylenol, but if he still had fevers on Friday to let them know and they would want to see him. He just woke up now (7:00) from a nap and does not have a fever so maybe it has finally broke.
Tuesday:
Just a quick update to yesterday. We were able to give Owen Tylenol for his fever since he had the bone marrow procedure and his counts were good. The fever was probably due to that. He seems better today, but tired. He is taking a long nap right now, so I think between yesterday and his busy weekend he was just worn out. So nothing to worry about he is just fine!
Monday:
Well Owen had a bone marrow test today and everything looks great!!! Whew!! Always happy to hear those beautiful words that he is staying clear. Owen was really nervouse about going because it does hurt. The doc took it out of his front hip this time and Owen said that was alot better. Whe they asked if there was anything Owen was allergic too, he said "Yes - bone marrow", that was a new one for the doc but he had to give Owen credit for that one! We go back to Rochester next thursday so the full results of the test will be done by then. We went up to 7H again to visit and this time there were lots of our friends!!! Owen was awful shy though.. he says the bone marrow procedure made him shy because he was alittle sore.... It was nice to see everyone and they were thrilled at how great he looked!
I think I made a mistake though after the bone marrow. We went to Kahunaville for lunch to celebrate the great news. Owen wanted to go somewhere special, somewhere cool like Bugaboo Creek in Rochester. So I thought of there. However it was a little bit of a walk thru the mall as i didn't park in the correct part of the parking garage. Then after leaving the resturant we turned the wrong way so we had an extra long walk leaving. But anyways by the time we got home Owen was feeling a little warm. He was 100.4 I was suppose to go to the SU game but was a little nervous about leaving. So I stayed home. His temp has gone up to 100.8 and is remaining steady. It is probably from over doing it after the procedure instead of resting. But better to be safe than sorry. If he doesn't start coming down I am going to call the doc just to see if I can give him some tylenol. He says he doesn't feel bad, just sometimes he feels a little woozy.
Chris made out well at the docs today. He got all his staples and stitches out. He almost fell though at the doc office, he lost his balance and thank god the nurse caught him. I don't know how she held him I would have dropped him - Great catch Eddy! So he was a little green by the time he got home. Dad took Chris today since I had Owen's appt. Thanks Dad! But he is feeling pretty good. He is not allowed to put weight on it yet but can start trying to do some knee bends.
Owen had a great and busy weekend. He spent Friday day with Papa Fred, and then Saturday and Sunday nights at his friend Thomas' house. He never even wanted to talk to me when I called. He would just say I love you mom, good bye. Just way to busy and having fun!!! We will have to do some more firend things this week if we can while they are off from school. He just thrives on being a kid again. Hopefully school is just around the corner....
Owen had a great weekend. He went bowling on Friday with Papa Fred, Sam, Nicole, and Kim. They had a great time although I didn't find out till later they used bumpers!
He spent the night at Papa Freds and Grandma Lea's. They he got to be picked up by Mr. Jorgenson to come home for school. They worked on centers, which is an activity they do at school which is a variety of skill activities. Owen was so happy because centers are fun and not like work! Later that afternoon his cousin Mathew came over to play. They played playstation all night, Mathew showed him how to get on the internet and get hints and cheat codes so Owen is in his glory. He was bursting at the seams when I came home with how far they were on some of his games. I said but that takes the challenge out of the games, it can't be any fun.... wrong... Mom it is so cool, look what I can do now.... Hmmmm will have to think on how to make him understand this one. Mathew ended up spending the night so they had lots of fun.
On Sunday his friend Dan came over for a little while. His Daddy had come to help me get a recliner chair upstairs for Chris...more on that later. Papa Fred and Grandma Lea brought dinner for us - Thankyou!! So while they watched Jake and Ty I brought Owen down to Juhl's Fuel because they had a fishing derby this weekend and dedicated it to Owen. My husband was going to take Owen for a while but that got cancelled ;-) Thankyou for the fishing derby, that was wonderful! They even gave Owen the trophy for the walleye division because no one won it. Owen just loves trophies!!
Now an update on my big boy! He came home Saturday. He is in ALOT of pain. His leg is really swollen and he can't move much. We brought a recliner up for him because he wants to sit up. But he hasn't been able to get out of the bed yet. Even with help he gets so far and then just can't do anymore. He wanted to go in our room when he got home because he figured he would be "safe" there from the little ones getting to him. We can just shut the door to the bedroom. Believe me this is best for ALL of us!!! They switched pain medicine for him today because the other didn't seem to be doing anything for him. He has to go to the doc next Monday. Hopefully he is feeling a little better by then. I don't know how we are going to get him down the stais yet. Two of his friends helped get him up. Mostly guided him he was able to brace his bad leg with the crutches and pull on the hand rail to pull himself up the stairs. Down might not be so nice.
I will keep you updated on my boys as the week goes by!
Since this is a great way to reach all of you I thought I would use this to let everyone know about my husband Chris. He was in a snowmobile accident Wednesday night. He broke his femur bone in three places. This is the bone between your knee and hip. It was broken so bad they needed to do surgery. So thursday morning they put a nail like rod through his knee and up through the thigh so reconect his bone. This rod will stay there for ever. He is in alot of pain right now. He was pretty much out of it yesterday and slept most of the day, waking for brief periods. He will have to stay in the hospital for a couple more days. They need to make sure he doesn't get an infection, and to see if there are any other areas that are hurt. The initial check in the ER showed he did isolate the injury to the one leg. The doc said this is amazing, with such a high energy impact that he was not hurt worse. Chris did say his other heel is starting to hurt if he puts any pressure on it, even just resting it on the bed. So they took more xrays of that and we will get the results this morning. The doc said it may take a couple days before he realizes something else hurts. He was in shock the night of the accident and his main pain was his leg so he may be blocking other areas that hurt. Now that his one leg is stablized he may realize he is hurt somewhere else. He will be recovering for 2-3months. It takes about 2 months before they know if the rod they inserted works. Sometimes they have to re-do the surgery to position the rod differently. The doc was very happy with the surgery, he said it went very smoothly and the bone came back together nicely so hopefully this will be the only surgery.
For those of you coming Saturday, we are still doing it. Chris will be in the hospital and so we are going to go ahead and still have our final meeting.
Well our family certainly never gets to have a dull moment! I am all for the quiet boring life - a life at home not hospitals!!
Owen went to his friend Thomas' house this weekend for a sleep over. This is his first time to stay at a friends house since August and boy was he excited! He didn't want to come home!!! He was there from Saturday morning until Sunday at 5:00! He was just beaming when he did come home. They played lots of action figures and gamecube. He said he just liked having a friend again. Now he wants to know if every weekend he can have friends over or go to a friends because that is the only time they don't have school. We'll see O - I don't know about EVERY one.
I'll let you know how this week goes, but it is off to a great start!
After the doc appt we headed to Owen's favorite restaurant in rochester... Bugaboo Creek. It has lots of moving animals, a talking buffalo and moose. And Timber - a huge talking tree, who claims to be Douglas Fir tree's son. We met his Aunt Susie there for a late lunch. So that was a fun treat for us, and a nice visit with Aunt Susie who we use to see alot of at the hospital because she lives in rochester, so we had a lot of catching up to do.
Back off to home, where I had to swap kids, and whisk Tyler off to his evaluation for kindergarten at his Fospa class. This was not good and very sad for me. They just have your child do some simple things, identifying shapes, repeating patterns... etc. Tyler can not do any of these things. It was very sad for me because Tyler has really come so far lately, increasing his vocab and things he is able to do, but even with all that he has accomplished he still is so far away from where he needs to be. We have alot of decisions to make about Tyler before kindergarten this fall. I have several options to explore before I make any decisions.
Owen is all geared up for this weekend. he is going to spend the night at his friend Thomas' house. He is so excited. He has not had a sleep over at a friends house in so long! I am so happy for him and just brings a smile to you face to see him shine over something so simple yet, so big for him!!!
I'll let you know how his big night goes on Sunday!!!!
Well we had a good weekend. I have created a school time for everyone. After breakfast all TV's, PS2, everything is off. We do music, arts and crafts and work on our math and writing. So far so good. Jake and Tyler like all the activities, and love sitting at the table with Owen and "working". Owen seemed to pay more attention because we were doing fun things at the table like crafts and coloring, and then doing his school work. Maybe he feels like he is the only one who has school and it felt more like a punishment or chore. But this seems to help a little bit. We will keep at this. It actually is easier on me too because usually Owen is working on his school stuff and I am running between him and the others and sometimes it gets a little confusing and chaotic. This way we are all together in one place and everyone is happy! :-)
We braved the cold today and went outside while Jake was sleeping. Poor Jake he missed the fun, he hasn't had a chance to play in the snow yet this year, but it has just been to cold! Owen and Tyler took turns riding on the snowmobile. Tyler just did a few laps around the yard but the grin could be seem a mile away! My helmet fit Owen so he was able to go for a ride out into the fields. He was so excited. After about an hour outside we figured it was time to come in. Tylers cheeks were soooo red. Owen wasn't ready yet. He had the helmet on so his head and face were warm. Chris took him for another ride. They came back after about 20 minutes and Owen was ready then. He came in the house ready for some Hot chocolate. he said his fingers are numb, so now he knows what numb means! Chris asked him why he didn't say he was cold. Typical answer.... I was having too much fun to care!
He has actually eaten better the last 3 days. He has been eating good meals, and lots of snacks. Sometimes his snacks are whole sandwiches! Hopefully we can gain a few pounds here and get some meat back on his bones. He actually weighs the same as he did in August but he has gotten taller so that weight has been stretched out and just doesn't look the same.
Well here is to a good week of eating, feeling good, and continuing to improve on our school skills!
We have our first appt. back in Syracuse on February 9th. The doc in Rochester will talk to the one in Syracuse to see if he wants to perform the next bone marrow aspiration there, otherwise he will schedule it for our last visit in Rochester on the 5th. We will still have to go to Rochester once a month or every other month for a while but we will primarily be in Syracuse after the 5th. Once our visit's in Syracuse go to once a month they will look at taking Owen's tubes out. Owen was a little worried about that because it means he will have to get poked for blood draws. However he will not have to have his bandage changed once a week which he also hates. That is still a couple months a way. They just don't like to leave the tubes in when they are not accessing that much because of risk for infection and blockage.
Owen's Day at Pizza Hut was a success. We don't know how well yet, but even while we were there for lunch there was a steady stream of people coming in and alot of them we knew so they were there for the promotion. Thankyou everyone for coming out and supporting us yet again!!! I think Owen thought it was going to be more than what it was because he got bored and was ready to go back to Aunt Annas and play. It was just lunch with your family, sorry Owen!
Owens attitude is good some days and he is very frustrated and breaking into tears others. I am sure he is bored to tears with being home. We can't wait to get him back in school, he just doesn't have the same enthusiasm that he had for his school work than when he was there. I think he looks at it as a chore now instead of part of his normal day at school. We will just have to get creative and find something to make it interesting and fun. Any ideas out there?
Tonight Tyler started Fospa which is a pre-K class with the parents for 1 1/2 hours every week. He really seemed to enjoy it. He went right in and sat with the kids in the middle of the room on the floor, the parents sat in chairs surrounding them. He knew alot of the songs, they sing them at preschool. He kept turning around and beaming at me. We then do activities for the next hour. He did pretty well with those. One of them was to trace their body and then color it in. He started out great and then kind of lost interest and was ready to start running up the halls. I told him he would go home night-night and that seemed to work, he sat down and scribbled until we were done. The other centers were games, and sorting things and he did so-so. He got bored with some and others he liked. He was tired by the end and laid on a bean bag chair under the table and told me night night. But that was okay it was time to go.
Owen went to Papa Freds and Grandma Lea's Friday to spend the night. A good night to stay in, it was miserable out! That didn't stop Mom from going out for a break with the girls, but it was a short night, the weather was just too nasty to be cruising around. Mr. Jorgensen picked Owen up from Papa's saturday morning to come home for some math. He worked very well today and got alot done. He started doing subtraction too on his math 'Mad Minutes'. Owen couldn't wait to show Mr. Jorgensen his 'surprise', the 100 he got on his addition. After Owen finished all his work he got to be the teacher and give Mr. Jorgensen a lesson on PS2. He trained him on Batman, I wonder how long it will be before Mr. Jorgensen asks for a PS2?
We went back to Papa Freds and Grandma Lea's saturday night to watch the SU game and Owen was spending the night again! He looked like the old Owen. After the game we were playing music and Owen was break dancing on the floor. Spinning and jumping around he wasn't too bad. I asked him where he learned to break dance and he said he saw it on Cocoon, when we watched that at the hospital!
Owen was very grumpy and would break into a cry in a second come sunday. Maybe he overdid it this weekend. He had to have a few timeouts. He was suppose to go to Aunt Annas to spend the night Sunday because his buddy Thomas was coming over Monday to spend the day there too since there is no school. However he fought his bandage change and was just not listening so the sleepover was cancelled. If he gets up this morning with no fighting on the meds he will be allowed to still go spend the day.
Today is 'Owens Day' at Pizza Hut. Pizza Hut is donating part of the proceeds from all Pizza's ordered today from people who mention Owen to the Owen Fund. We are all meeting there for lunch, we are going early at 11:00 so there won't be as many people. So hopefully Owen doesn't blow it, so he can have a day with Thomas and a fun lunch.
The bottom of one of Owen's feet is a little red so that may be that graft vs host disease. We just have to keep an eye on it. The doc says at this stage even if it does develop it won't be hard to control, and shouldn't get too serious. His white count did come back up after his cold. I told the doctor about Jake being so sick. He said he would want to know immediately if Owen started showing any signs because if it knocked Jake this hard, it could be very serious for Owen. Even with keeping the boys apart as well as we can the germs from Jake are on us, on the couch, everywhere. He said these viral germs can live for days on surfaces. Mom took Jake back to the docs today because he developed a rash on his stomach and forehead and is coughing now. Owens doc wanted them to get a viral throat culture and nose culture on Jake so they could have a heads up on what it was in case Owen developed it. Unfortunately they don't do those types of tests at the pediatrician office. Jakes doc thought it was probably the roseola virus which takes about a week to go away and we should see Jake getting better anytime now. He actually was better today as far as time he would leave our arms and play a little, and even did some giggling.
I asked the doc the BIG question today that I have been so nervous to ask.... What are the chances with Owens mixed leukemia that it will return. Is it a higher chance since it is a rare form? Well he couldn't really answer. He said there is such few cases of this type they really don't have a good percentage to base anything on. They have been consulting other docs around the world and that is how they all decided on the bone marrow transplant as the best way to treat this. However until they actually had 50-100 cases of mixed leukemia with a transplant it was not a question he could answer. He said however with regular leumkemia either the ALL or the AML type and a bone marrow transplant the chance of a relapse was small. Well it is around 15-20 which may sound like a lot to me or you but he said it really is not a lot. He said Owen has done so great with everything that they just hope that means he is a success, and he will not relapse. So I don't know if I feel any better or not.
The doc told me to go ahead and schedule an appt with Syracuse, to go in 3 weeks. We will continue to go to Rochester once a week until then. He will then do another bone marrow aspiration, and then we will only have to go to rochester every couple of months. He will be in contact with our doc at Syracuse to fill him in and get him ready for us to start going there. We will only have to go to Syracuse every other week. So things are certainly sounding good.
Owen got 100 on his Math Mad minutes yesterday! He has 5 minutes to do 100 math problems. The test he was doing was addition problems from 0-5. So we move up to the next level now. A score of 90 or above is what he needs. So today he did 0-10 level addition. He got 46 (but 2 wrong) so not great but it was the first one... tomorrow will be another day. He likes doing these and gets so excited when he gets close. He was bursting at the seams when he finished the whole page yesterday!
Owen has been getting quite a few punishments as we start to really push the structure back into our lives. He usually really protests and cries and yells about how unfair it is, then once he pushes us to the end and he gets some form of punishment, timeout, or an activity taken away he usually comes around and becomes this good boy again. He did not do a good job today with Mrs. Vasquez. He wasn't playing attention or doing his work. Well he has no playstation or TV tonight. Now he is this perfect little boy making drawings for his cousin Dejah and just as polite as can be. We will get back to normal, a few bumps in the road to get there but we are on our way back.
If anyone is interested my cousin did set up a caring bridge web site. It is www.caringbridge.org\canada\dejahmilne
He is doing well and just had his second dose of chemo.
We have our last dose of chemo this Thursday. Yeah!!!!!
Owen had some special visitors Saturday. Deb and Liz from the Make A Wish foundation came to talk to Owen about his "wish" and to see if they can grant it. Owen asked to meet Spiderman. When we were at University one of the little boys there was also a huge Superhero fan and he went to Universal Studios to meet Spiderman. He had his photo album of his trip and Owen thought it was sooo cool. They asked him what his second wish would be... he said to ride the rides. So I guess he didn't get they meant somewhere else. I tried asking and he said to meet the Hulk. He figures he has met Batman at Darien Lake a couple of times and at University Hospital so he needs to meet some of the other heroes. They were really nice and were going to check into what exactly was at Universal and see if the committee would approve the trip. Owen would not be able to go until later this winter or spring. So that was very exciting.
Owen went to his friend Dan's house to play later in the afternoon. He had a good time and didn't come home till late. Even on the way home he just wanted to know if he could go back tomorrow or go to someone else house, or have someone over. Guess he is getting very tired of us for playmates. However we just hung home on Sunday. Papa W. and Grandma came over in the late morning, but that was it.
We have to really start buckling down with Owen though. He has been pampered for quite a few months and it is coming back to nip us now. While we are trying to start having a little more normalcy in life, Owen is fighting having the old rules and responsibilities coming back. This is definately something we need to straighten out, not only for Owen but the other two need the structure back too.
Tomorrow we reduce Owen's cyclosporine a little bit more. We are down to .5 ml in the morning and night. We reduce it by .25 each monday so as you can see we are getting close. When I changed Owen's bandage today he had a few bumps under his bandage. I think they are just irratation from the tape of the bandage, but I will have to keep an eye on them as we don't want him to get an infection.
I asked the doc today about my cousins little boy. I just wanted to know IF in anyway there could be some link because it was so weird that we were there in July and now both boys have a form of cancer. However I got the answer I thought... Owen probably had the cancer before we even went. It just didn't show its signs until it was in full form. Even with Dejah he said he probably already had it, that the tumor can be growing for a long time before any signs are there. It is just a very freaky coincedance that this happened. So I guess no matter what you always come back to wanting to know WHY and HOW cancer starts, but there is no real answer. Dejah did come home from the hospital today but has to go back on Monday for more chemo. They are trying to shrink the tumor first, then they will remove it.
Owen used one of his "credit cards" he received to buy himself a steering wheel for playstation. It has gas & brake pedals too! He was so excited getting it. I told him he had to do 2 pages of homework before he could play and quick as a whip he told me... No, Mrs Vasquez left that for me and Grandma to work on together. Nice try right... I told him it was for ANY time not just grandma time. So he did do it, and he he was to the races. The scary thing is he thinks he can drive now.. its easy. So I watched him, he took out many pedestrians, other cars and a few buildings, not bad. Thank goodness we have 10 years before he'll be in the real car!
Mrs Vasquez came today for school. I guess I confused some when I said Owen was back to school - I meant home school! But he did well, and has some homework to work on till next time. I think he was ready to sit down and do some work, at least with his teacher!
Otherwise not much to report on our end. Which is good right! We reduced his cyclosporine level again on Monday so about 4-5 more weeks with no problems as we reduce it and we will be done with that one!!
Owen is glad that it is beginning to snow again. He was worried before because he didn't even get a chance to go play in it yet. I told him he didn't have to worry we would be seeing alot more. So I guess he can believe me now.
Owen had a good weekend and is feeling good. He was stuffy last night and look some more decongestant and today he seemed fine. Hopefully this will pass by. We are down to just one doc visit a week now so that gives us a little break. We go on Thursdays now. Owen wants to go see Peter Pan this week so as long as he keeps feeling good he will be able to go. It is back to school this week for both Tyler and Owen. It will be good to get back in the swing of things for everyone.
We had bad news strike our family again. My cousins who live in Vancouver, British Columbia just found out their little boy Dejah has kidney cancer. He will be four in February. We know exactly what they are going through right now and the pain and frustration they are feeling. We were just there in July and to find out first Owen and now Dejah are striken with cancer is just so unfair. How can this happen to two little boys in the same family?! He had a tumor on his kidney. They believe it is called the Wilm's tumor. First thought was they would just remove the kidney/tumor together and then start chemo, but they are now doing a biopsy on Sunday, making sure it is the Wilm's tumor and start chemo on Monday or Tuesday. Hopefully within 6 weeks the kidney/tumor will then be removed. I know all of your prayers have been so good for Owen and I am hoping you will share some of your prayers for Dejah. He is getting a tube put in like Owen's that will help for giving chemo and medications. Owen was very happy that he was getting "tubies" because needles are no fun.
Our family has been through so much and we were hoping 2004 would be a good year, but it has started with a bang. So please keep Owen and Dejah in your thoughts we all need you!
We are going to keep reducing his cyclosporine every monday. So far it has not brought on any of the Graft VS Host disease so that is good news. We have to start really pushing the fluids agian, I think we have become lazy on that and he is not getting in his 40 ounces aday. The doc said he could see it in his kidney, liver levels. They are not alarming but we need to get more fluids to keep the meds flushed in his system. I asked the doc about his temper he seems to have now. When he gets mad he gets MAD and can strike out against his brothers. He said none of the meds he is on would cause that, it is probably more of a frustration thing at wanting to be a 6 year old again. I told him we started letting him have friends over again and he said Abosolutely. We just have to screen everyone to make sure they have not been sick or been around anyone sick. His blood counts are great but the counts he has will protect him against infections. The other type of counts that have not come back yet are the compostion of his Neutrophils and lympocytes. These are the ones he needs to fight the flu or serious colds. These will still not return for quite some time and they are actually not even testing on the blood work for a detailed look at these yet because they don't expect them back this early. More towards day 100 post transplant or after they will check in more detail for these. He said Owen could start going to the movies and things like that, we just need to go at non-peak times so he is around less people. Owen was thrilled to hear this. He wanted to go today. I told him next week when the other kids go back to school the theaters will be less crowded and we could go.
He went to Papa Freds and Grandma Lea's after the docs. He called me later to say he wanted to stay the night. So I packed up his meds and brought them over there. He took 2 for me, so they will only have to give him one before bed. He seemed very happy to be out and having a new environment. He was quite energetic and wresting with Papa, so it was like the old Owen.
Owen has a little bit of a cold right now. He is stuffy, but so far no fevers. He did get a little warm last night, he went up to 99.5 but it came back down so thankfully no ER trip. He has been napping the last couple days so I think this cold has taken some of his energy from him. I am able to give him a decongestant. He is soooo excited about having yet another med!!
Tomorrow we have a doc appt. It is his third chemo appt. Only one more to go after that!!! So Owen can't eat after midnight tonight so it will be interesting to see if the ride in the car on an empty stomach effects him. I'll let you know how we make out. He has been complaining sometimes that his heart hurts. But it doesn't stay long, I will mention that to the doc to see if that is anything.
We had our doc visit today and he looks great. I think getting back on a normal sleep schedule has helped. He was up and had breakfast before we went. When they called his name he ran into the office. The receptionist just looked and went WOW! Quite the new kid from his normal sleepy, lethargic little boy that comes in. The doc was happy to see him sitting up and chatting away. He tried to tell the doc how his medicine scares him, especially the bactrim because it looks like so much. The doc said I am sure you go to McDonalds and get a soda some times and that is 12ounces and you don't think that is alot, so the medicine is just a tiny bit. Owen said no.. soda doesn't scare him. Good try Owen but you still got to take it! We were out of there in record time - 40 minutes. But Owen needed to stay longer and play in the game room for a little bit. The doc cut his cyclosporine dose again, so we are on our way of weining him off that. Another month and hopefully we will be done.
We stopped by McLouglins on the way home to look at their bunk beds they are getting rid of. Owen wants bunk beds. I ended up leaving him there to play with their girls. He really needs a break and was thrilled to be able to stay for a while. Tomorrow he might have a friend Lauren over for a while. We are going to start letting him have little play dates as long as they are healthy. He needs that. Hopefully soon we can branch out and go to some matinees once the kids are back in school so they won't be to crowded. He is ready to start having a little bit of a normal life.
He has been feeling good. He had a bad headache last night and crashed at 8:00. He slept through till 9:30 this morning. I was hoping this was the night to finally get him switched back around to his 8:30 bed time.... But we went to Lights on the Lake tonight. Grandma Pat, me, Tyler and Owen. Owen needed a break from the house. He has been getting very grumpy and acting out very angrily at his brothers or us. I think it is just frustration at not being able to do much. I was hoping with all the new christmas stuff he would be too busy but I think he is just still crazy. We called a couple different friends to come over today, but they have colds and so they couldn't come. Owen was pretty bummed. So I asked him if he wanted to go see the lights. He was very excited. Both he and Tyler really enjoyed them. They thought it was cool that they got to sit in the front seats on our laps as we drove through. Well we got home at 10:00, so much for regular bed time, although he did crash on the way home from Grandmas and went right to bed.
I do have some more pics, but as you can see I haven't put them on yet. I am ready for bed but tomorrow.... I hope!!!
Owen did get sick when we first got to the docs, and then again immediately after taking his cyclosporine at home. Otherwise he seems to be feeling better. He is still real quiet and resting alot. Hopefully he will perk up as things go along. His temp has come all the way down now.
Merry Christmas to all and to all a good night!!!!
Owens fever came back in the afternoon although we are allowed to give him Tylenol tonight since he already had cultures drawn and we are going in tomorrow. He is very achy and just wanting to lay all day. He really aches if he gets up and walks around. He did finally want to eat. He has had a hotdog, a little bit of mac&cheese and now he asked me for a grilled cheese. So I am hoping this is a good sign that he may be feeling better or that the fever has broke. He is still warm but it is staying right around 99.
I am exhausted. It has been a long day. I was able to slip away and get a few hours of shut eye today. I hope I have good news for you tomorrow, we want to have a great christmas. So I need all of you to think of us and pray that we remain home for christmas. Our appt is at 10:00 tomorrow so I will try and update and let you know how things are when we get home. Hopefully we will be home early afternoon.
We went up to the 8th floor the bone marrow unit to have a quick visit. Owen was quiet and kind of shy. He did tease Gerry a little bit about spiders, because she really doesn't like them. His first visit there he put plastic spiders from his trick or treating on her chair.
It was nice to visit and knowing we were leaving!
Owen had another special delivery today. Someone came to the house and delivered a HUGE box of presents for all the boys and some for Chris and I. He wouldn't tell me who he was or who the gifts were from except that Santa sent them. So that made all of the boys day, as they were buried in wrappings while they discovered all their goodies.
I actually got some christmas cards done today. But thats it, they get mailed tomorrow and that is all I am going to have time to do this year. Hopefully next year will be a more normal christmas time.
The battery on the camera is charged so I will try and get new pics out tomorrow, I want you to all see Owens new hair growing in. He is looking really good, and is looking very healthy with his new doo.
Tyler was just as happy as can be. He didn't let go of Santa's hand the whole time he was here and just smiled from ear to ear! Jake it still unsure of this strange looking man and keeps his distance. I am sorry to say though I charged the camcorder but did not check the camera and the battery was dead!!! So I did take pics on our regular camera but I'll have to wait to have them developed, when I finish the roll.
Owen went to Grandma Pats for a special night Saturday. She called me after he took his cyclosporine because he immediately got sick. She said he hadn't been upset, and had eaten a really good dinner. Unfortunately if he hasn't kept the medicine in him for at least 30 minutes he has to re-take it. He did take it again and he kept it down, he said he doesn't know why he threw up it just happened.
Tomorrow we have a doc appointment for a checkup and blood draw. I should find out if they have any other info from the bone marrow done on Thursday. So I will report back tomorrow!
I had 2 melt downs today myself. First I went to wegmans to meet some people from Community Computer. The employees there had put in donations and then they donate it to a charity every year. This year they chose Owen. So that got me crying as they presented that to me. They were really nice and one of the girls is a runner and wants to dedicate a marathon she runs in to Owen this year also. Have I said how amazed I am in everyone in this community!!! I am just speechless in how caring and wonderful everyone is.
Well I think by the time I got home Dad had several more gray hairs. Jake and Ty gave him a run for the money! I got a couple chuckles from Owen as I asked him about Papa and the other boys.
I got Owen into the shower later. He was concerned because he knew I was going to remove the bandage from the bone marrow when he got out. It came right off and the sight looks great. He was crying and told me he wanted to go home. I said you are home honey. He said no I mean my old home, my old life, I don't want to be sick, I don't like all this. Well my heart was ripped right out. I gave him a big hug and told him he was getting stronger everyday, and soon he would have his old life back. I told him he has done such a super job and he would be back to normal in no time. He just hugged me and sobbed. I finally got him calmed down. I had to take a break and take a few tears on that though. He has been such a trooper and this has got to be so hard on him. Everything he wants to do he is told he can't do right now. Or he will say can we do this when I get better? I can't wait till he gets the okay to be a kid again!!! He is fine again now, and says he is feeling alot better now. He thinks the bandage was hurting him mostly because he isn't as sore now. It was just a stretchy square ace bandage on there so I don't know how that hurt him, but what ever he says. He is playing Batman action figures now so he seems to be doing fine.
Tomorrow is the big visit from Santa - the real one!!! I am so excited. Owen doesn't know. I told him we needed to get out of our PJ's earlier tomorrow and try on our christmas outfit. I told him I heard a rumor someone special was coming to see him but I wasn't sure who. He immediately guessed Santa, but I told him I didn't know.
Can't wait to see his face, this should be a very nice surprise for him.
They did both chemo and the bone marrow aspiration today. I couldn't believe the size of the needle they use to go into the bone. It was a little smaller than one of those clear bic pens. Yes I was in the room the whole time. I am actually getting quite good at these sort of things. I use to feel faint at the thought of a needle and now I am watching needles inserted into Owen and am dealing very well. The anastesia they give him does not totally put him to sleep. He is asleep but still feels things, but part of the drug is a memory loss so he won't remember anything he did feel. So while they were inserting the needles he would move and try to pull away abit, but the nurse is leaning over him holding him. Everything took about 45 minutes.
He woke up very sore, and crying. Once he was a little more awake, he was brought back down to the outpatient area so lay in the recliner and wake up. He kept crying that he hurt. We got him some warm packs and tylenol. He kept telling me he wanted his "bone" back, it hurt too much. Once the tylenol kicked in, he felt a little better, and would kind of perk up but then go back to whimpering. He did finally ask to eat, and I went and got him hotdog and chips. He ate pretty well. I had to carry him out, well just to the waiting area where the wheelchair I had used from the parking garage on the way in was still there. He said he couldn't sit in his car seat it hurt too much to sit straight up. So I did allow him to lay in the back seat for the ride home. He slept the whole way home.
He keeps dozing on and off, but when he is awake he is grumpy and very sore. I told him Jake wasn't this sore and he had two bone marrows and a lot more was taken from him, so why wasn't he sore when he woke up. This only got him more upset because he didn't know, but I just didn't understand because he was hurt! So I quit trying to joke with him, he isn't in the mood today I guess. He is actually asking for the tylenol though so he must be sore.
The doc had called before we left and had great news!!! The bone marrow looks great!! Everything seems to be going well, his blood counts are excellent. The only thing still suppressing his immune system is his differential which is the percentages of each of the different types of blood cells within your blood. The doc will be doing a more refined test of the bone marrow, but everything he saw today was beautiful!!! So how about that for a great Christmas present!!!
I asked the dreaded question about the leukemia coming back. He is at greatest risk from about 2 months post transplant to the end of the first year. Then the second year is a little less risk, and the third year starts to be real low risk... but it is still generally the five year rule.
Owen has a faint five o'clock shadow on his head. He did have real blonde fuzz on his head but now it is darkening up and there is a lot more of it. His eyelashes and eyebrows are growing back too. He wanted to know what a five o'clock shadown was, so I said you know how Daddy's face looks if he hasn't shaved for a few days. He looked at me all confused and said "What!? Daddy doesn't even shave!" I started laughing I was like your right Daddy is a bad example (since he has a beard). So I told him I would show him what I mean next time papa was over and needed a shave.
We only have one appt next week due to the holiday. Then the following week we go twice. If all goes well they will be cutting our checkups down to once a week. On Monday we are going to cut down on his cyclosporine. The idea is to wean him off of it a little bit at a time. So hopefully by a month- a month and a half he will not need it anymore. This should also eleviate 2 other meds also that he has to take. He takes a high blood pressure medicine, and a magnesium medicine because the cyclosporine causes high blood pressure, and low magnesium. Owen will be thrilled. Of couse all this depends on whether he gets the Graft VS Host disease as they decrease his dose.
At least we go to the docs tomorrow so I can let them know. They will be taking blood tomorrow too so that is good. If any of his counts have gone down a little that could make him tired. We have to be there at 9:30 tomorrow so hopefully the weather isn't too bad overnight or in the morning. I am planning on leaving at 7:00 just in case. If it is not bad I can have an extra cup of coffee to wake me up! We definately have to go tomorrow though no cancelling due to weather. It is both chemo and the bone marrow extraction. I know they say it is too early for the leumkemia to be coming back, but I still will be relieved to hear that it is Jakes marrow that is producing the blood and Owen's is no longer producing.
Owen had math tonight, he did pretty well. He has to be re-directed to remember this is school time not play time, but with such a great playmate (Mr. Jorgenson)its hard not to play.
Today I went back to work and it actually felt good to go to work. Felt like I am getting my life back and maybe feel a little bit normal again. Not that much was done at work today. Mostly trying to get my barings and try and remember where I left off, and where things stand at work and how many new things I have missed. And of course just a lot of visiting. Owen woke up crying that he needed me but Grandma got him calmed down and talked to him about how it is time for me to return to work. She even got him to promise not to cry and make me feel guilty that I am working because that would make me sad. He kept his promise too! It was a little hectic coming home from work and getting into the swing of getting dinner, and baths and play time but it will all come back to me eventually and I'll remember how I did it all before.
Grandma Pat had her first experience of giving Owen his meds and it went rather smoothly she said, but she has the "power" of christmas presents so that always helps!!!
Now that I am re-entering the real world I need to get to bed earlier so I can get up and function again. I was getting up early anyways to get Ty ready for school and the bus, but now I need to get up earlier so I can get myself ready, no more jumping in the shower at noon! Talk to you tomorrow!!
Well what can I say about Owens benefit on Sunday?! Just WOW!!!! It was incredible. I can not believe the number of people that came out to weather that storm and show us their support. Everyone constantly amazes me. We saw a lot of people we have not seen for years, there was family, friends and friends of friends.... it was just non stop. I said I think Owen likes to put everyone to the test. It poured rain on the first benefit and that didn't matter to anyone, and Sunday it was a huge blizzard and they still came. I hope everyone had a great time and again thankyou, thankyou, thankyou!!! We know we have a long way to go and hopefully only small hills to get over but seeing everyone there is truly uplifting, we know we have so many people praying and thinking of Owen. With everyones love pouring out he has to just keep getting better and better.
Well tomorrow I am returning to work. I am easing my way back in. I will go a couple days a week for several hours. I am going to still get Tyler on the bus in the morning and then come in. He is getting better each day but he was really been affected by my absence. He is no longer screaming and crying when I leave, he has realized that I am actually coming back when I walk out the door. (and it is the same day!) But I don't want him waking up and I am not here. Hopefully I still remember how to do my job! I think I have a lot of cob webs up there. Or else I have shoved my knowledge of computers out the window because I am now a part time medical professional and have all that info!!!
Thankyou everyone for being there for us, I'll talk to you soon!
We started decorating our tree tonight after the "babies" went to bed. We still have alot to do. But Owen was much better with his medicine tonight, whether it was because of losing privledges today, his promise to Mr. Jorgenson or because our neighbor Sue was here I don't know but it was very easy.
I talked to the doc about possibly a motion sickness going on and she thought it could be a possibility but Owen also did get sick after just leaving the hospital yesterday so that was not very long in the car. We will continue to monitor him and see how he does the next couple days.
Well tomorrow is the benefit and we look forward to seeing everyone. We still have decided not to bring Owen but it will still be a great day!! See you all soon.
We started heading home and only got a few blocks from the hospital when he started screaming again that his head hurt. I pulled into a parking lot where he got sick again. I called the nurse who told us to come right back. So back we went. Owen went right in and laid down. The doc came in and checked him over, he said so far Owen blood cultures were negative for infection. So they gave Owen tylenol and wanted him to rest a bit and see if the tylenol helped. He fell right asleep. After about 40 minutes we woke him up, he said his head felt better but still hurt. The doc wanted him to eat to see if he could keep it down. I went and got him some granola bars which he ate fine. He got up and was watching the crane and construction crews out the window building the new garage. Then we started doing a puzzle in a magazine. The doc came back and couldn't believe Owen was feeling so well all of a sudden. He still thinks it could be some kind of bacteria that is making him sick. We have to call the doc tomorrow morning and let him know how he is doing after he has been up for a couple hours.
So off to home we started again. About half way home Owen started crying again saying his head hurt. There was a rest stop a few miles up the road so I told Owen to hang on. He ended up getting sick again before we got to the rest stop. He just kept saying he needed to lay down. So I pulled in and let him lay down in the back seat. I wrapped two seat belts around him. It wasn't the safest thing to do, but I didn't know what else to do, he said he couldn't sit it hurt too much but laying down it was better. So he layed the rest of the way home. Once we got home he layed on the couch for a little bit and then has been fine ever since. Now I am wondering about some sort of motion sickness is happening. He has only been sick on the days we are travelling back and forth to Rochester. Maybe his equalibrium is off and making him sick. I am going to ask the doc about this when I call tomorrow. It has to be something. If he goes all weekend and is fine but gets sick on Monday when we go back to the doc it has to be something with the car.
I think this kind of sealed it for us though. We have decided not to bring Owen to the benefit. If something is going on inside him he doesn't need to be around everyone. Plus with daily news on the whole flu thing is making us very nervous. It just isn't worth it though, Owen could pick something up so easy, even with no one touching him or talking with him. So I am sorry that he will not be able to make it. But we will have a "Owen is all better" party one day and you can all come see him then!
I will let you know how tomorrow goes. These last couple days have not been pleasant and I hope nothing serious is going on in side him. I know he will have bad days but this has just been 3 out of 5 days and that kind of makes me nervous. So keep on praying and thinking about us we still need you and will for a long time.
I will let you know how we make out tomorrow!
Owen started his tutoring again today. Mrs. Vasquez came out for reading and phonics. She said Owen seemed very happy to get back to the grind. He lasted a while and then he was done. He asked her if it was time for her to go!! So I guess that was the sign. It will be nice to get him back on some schedules, and I think he needs it too. We are going to start weening him off of his hospital bed schedule too. Hopefully if we start now he'll be ready by spring for school! :-)
Today was not a good day for Owen. I got him up for his doc appt and we headed out around 9:15. By the time we reached the Nice -n- Easy store in Montezuma he was awake but wasn't feeling good. He started to get sick. I pulled into the store and got him out where he kept getting sick. When he was done I ran in the store to get paper towels and some wipes to clean him up. As we continued down the road he got sick again. I pulled over and got him okay again, and gave him a paper bag that was in the car. He continued to get sick the rest of the way to Rochester. It was horrible. He was crying and upset in the back, and I was crying in the front. That trip to the docs seemed to last forever. There was a wheelchair in the parking garage so I carried him to that and wheeled him up to the docs office. He continued to get sick the whole way up. I got him in the bathroom and went and signed us in and told the receptionist we needed a room ASAP because he was sick and needed to lie down. I went and got him out of the bathroom and they put us right into a room. He fell right asleep. The doc came in and Owen was real lathargic and very grumpy. As the doc was examing him he got sick again. The doc was real concerned he was having a serious Graft VS Host reaction and wanted us to stay around for the afternoon to be monitored. Believe me I had no problem with that! He did not like the way Owen looked at all, I told him about the 2 times he got sick over the last two days but that he has been fine otherwise. Owen fell asleep after the doc left and I think they forgot about us, at 1:15 I went looking for a nurse and she was shocked to know we were sitting in an exam room, she had been waiting for us in the outpatient room for us. So down we went and she hooked Owen up to an IV for fluids. He woke up around 1:45 and was as perky as can be. He said he thought it was just being over tired that made him sick. So they did not give him the nausea medicine. Then at 3:00 he started feeling sick again. So they did give him benedryl which knocked him right back out. The doc came back and checked him again and was much happier with the way Owen looked and the fact that he never ran a fever or had anything else seem to develop. He was going to release us to go home with some anti-nausea medicine. They took Owen's blood late (another oops), because they didn't have any orders for it, but I told them the doc wanted them so then they took it. So he couldn't tell me anything about those tests, but would call me if anything showed when they got the result. So by the time we got out of there and picked up the prescription it was 5:30. We got home around 7:00. Owen slept most of the way home. He complained of his legs hurting when we got home and so Mom was massaging them as I got the other 2 off to bed. But he would be screaming in pain one minute and the next would start laughing at the movie that was on. So I don't know just home severe his cramps were because Owen can exaggerate things which makes it hard to know where he is really at. He finally mellowed out and layed on his stomach and watched a movie. He is now upstairs laying quietly. I am hoping I can get him to bed, but he has slept the whole day! So it was a long day and not a very good one. Sometimes we take for granted how well he has done, but days like this certainly bring it all back quick. I hope tomorrow is a better day and I will let you know.
Owen is still feeling well. He did get sick twice this weekend. Once Saturday night, it was out of the blue. He was feeling fine and joking around and having fun and boom. I don't know why he got sick and he said he felt fine and then it just happened. So of course he slept with us Saturday night! I teased him and said he got sick on purpose and that brought a laugh out but he denied it. Then Sunday he got sick again right after taking his cyclosporine medicine. He was really fighting me and getting really upset about taking it. So I think that is why he got sick, he has done that before where he gets so worked up that he ends up getting sick. The bad part is if he hasn't had the medicine in at least 30 minutes he has to take it again, so that was fun. We are off to the docs tomorrow so I will let them know. Tomorrow is just a check up and blood work. I am hoping they will release Owen to beable to eat fresh fruits and vegetables again. He loves his fruit so that is hard not to beable to give that to him, and especially since it is so good for him.
I have to find out about having a live christmas tree too, I think I read somewhere in one of the many things I have had to read, that he can not be around one because of the mold and bacteria that can be associated with them and the water.
We had a surprise visitor today. Santa!!! He came to the house with presents for the kids. Owen knew he was only one of Santa's helpers not the real one. (Nucors christmas party for the kids was today and one of the guys was wonderful and came out for my boys - everyones generosity justs keeps on going and going!!!) Tyler loved him, right away he was wide mouthed and waving to him. He tried dragging Santa along to come play, he wanted him to himself. It was so cute. Jake wasn't sure what to make of him and kind of drifted close... but not to close and checked him out. I will get those pics out tomorrow I hope, I am ready for bed!! It is 9:45 and Owen is actually laying down already so I need to take advantage of this and go to bed too!!!
Tomorrow will be Tylers first day of getting on the bus from home. He has taken the bus from Grandma Pats but never home as our lives were turned upside down before school started. So it is kind of like the first day of school all over again!
I will let you know how we make out at the docs tomorrow.
Owen was very excited to get home. He perked right up in the car when we past Reese's Dairy Bar, he knew where we were. The rest of the way I could see his face just lighting right up. He got out of the car and ran right into Papa Fred's arms who was in the garage. Then into the house where Jake, Ty, and Grandma Pat waited. Ty was busing scoping out behind Owen for me and Jake was clapping and dancing when he saw Owen. It was truly wonderful! It looked like it was a brand new beginning for Owen, he ran from the computer to his room and kept dragging out toy after toy that he hasn't played with in so long. Ty and Jake were thrilled too because we have kept Owen's room off limits to them, so it was a big deal to them to be in there too.
Today was a new experience for me. I am sooooo out of practice of taking care of three boys. I was jumping from this one to that one, I don't think I stopped all day. Ty and Jake are quietly coloring right now, but that won't last long, and Owen is playing playstation (surprise). He is playing the new game one of the nurses gave him.
Owen did get the okay from the doc to go to the benefit on the 14th. He will make a short appearance, the doc said 10-15 minutes up on stage to say hi to everyone and then out the door. So I know everyone will be thrilled to see him but I wanted to let everyone know we can't have everyone running up and talking with him. There will be a lot of people there and therefore a lot of germs. We will basically have Owen up on stage for a bit then I'll bring him back home. I don't know what time yet that we will bring him in, but I will try and give you an idea on that as it gets closer and we make plans.
I may not write everyday now that we are at home, I don't know if I will find the time!! But I will keep everyone posted on our lives as many times a week as I can. I will keep this web site going until we get the "He is Cancer Free" from the doc!!!!
WE ARE COMING HOME, WE ARE COMING HOME!!!!! I just wanted to tell you that and then I am packing!
They did not do the bone marrow today, just the chemo treatments. The doc said they discussed it and saw no benefit in doing the bone marrow this early. Owen was in remission when they did the bone marrow transplant, and because he is engrafting so well with Jake, no real side effects they don't think they would see anything at this time in the bone marrow so they didn't want to put him throught that.
We have to come back twice a week (mondays and thursdays) for the next month or two, then depending on how he keeps doing they will taper that off to once a week, and then in a few months we should get discharged back to Syracuse for checkups.
We are so excited. I have alot of packing to do as we have alot of stuff here. Owen is going to play playstation while I pack, NICE. No help there. Thats okay we are going to be home later this afternoon yeah yeah yeah!!!
Talk to all soon!
He is feeling good no problems. He will have to get up early tomorrow, out doc appt is 9:30, which is like a horrible hour for owen who sleeps till 11:00! I don't know if I will know anything by tomorrow after noon or not till Friday on the results of the bone marrow. Keep your fingers crossed it is all good!
Mr. Jorgenson came up today and him and Owen did Science. Owen wanted to learn about the earth rotating around the sun and why days are long and short. He learned some new magic tricks, so he is ready to try them out. They he taught Mr. Jorgenson how to beat Sly Cooper on PS2.
The holiday party is going on at the house here, lots of people, and food. Unfortunately Owen can not go because of the number of people here, it is packed. I told him we can come up later and see all the decorations once it has quieted down.
Friday morning Owen is going to paint water colors with the house resident manager. It gives him a chance to talk about his experience with someone else and discuss some emotions he may not say with people he is with everyday. They do an art piece, not necessarily of a picture just color blending etc. Then this piece is autioned off at their Red-Tye Gala. So I am thrilled they chose Owen. He is happy and loves to work with other people, I told her he is not shy in the least bit, but this would be good for him.
Take care, and I'll let you know about tomorrow as soon as I know!!
Good day to everyone. Owen was thrilled to wake up to snow! Of course that was at 11:15 he is lucky the sun had not melted it all by then!!! Actually it is very cold here and I am sure it is at home.
It has been pretty quiet today. We finally got Santa's letter done. We did some decorating on the letter for him too. Owen was going to change his list to a bunch of video games, but I explained to him on Santa doesn't like little boys and girls spending so much time on video games and doesn't really like to buy them so to keep with his original list. So that is what he did, he will work on the grandparents for the video games because they all love to watch him play. (or so he says).
He is feeling good, just a little itchy every once in a while and I am putting benadryl cream on him. So rash though so that is good. He is eating good and drinking really well. He wants to limit his visits to the doc and is doing well with that. He had a little bit of a bad moment last night before bed. I think he was getting tired but he just started crying and wanted to go home, and have his own bed and his own stuff! I got him calmed down and found out one of the reasons he was so upset was Jack Frost was on TV and we don't get that channel in our sitting room and there was people in the other downstairs one. He has been really confined just to our sitting area, I have not even let him go down to the other room downstairs because it is a full house here now and someone is always around.
Papa is bringing up his play station for him today so he will be able to play DVD's or his games for the next couple of days. His battery on his gameboy went and we don't have the charger with us, so that was another "dramatic" event! He called Papa Fred and turned on the charm and told papa how that would really make it feel like "home" here if he got it. He told me he was a very lucky boy to have such a nice Papa, and I was a very lucky girl to have him for a Dad. I won't tell him about the time when Dad ...oops never mind.
Owen says hi to everyone and he hopes to be home soon!!!
I have been trying to get up here to give an update, I guess I better do it in the afternoon from now on, everyone is using the computer after 6:00!!
Owen had a good day. We went to the docs this morning and everything was fine. They took another blood sample to check his cyclosporine level. He never called this afternoon to adjust it again so they must have reached the right level for now. We do not have to go back until Thursday now, when he will have his bone marrow sampled and his first treatment of chemo on his spinal fluids.
Owen was thrilled to here that, I have had to drag him out of bed each morning at 9:45 to head to the hospital. He has it rough getting up that "early". Tomorrow he says he is sleeping all day till the next day to catch up on his sleep. I thought maybe going to bed before midnight would help but that didn't interest him.
We are watching some christmas specials tonight. It was a quiet day. First day with no visitors in and out. The long holiday weekend is over. Papa Fred and Grandma Lea might come tomorrow if we don't get the storm. Owen can't wait for more snow, he wants to build a snowman. I told we can't till the doc says we can hang outside, and plus we have no boots or snowpants up here. I feel like the grinch sometimes, whenever he thinks of something to do, I have to say we can't. He takes it very well, with a "well not right now, but when I'm better right?" He breaks me heart with his great attitude, I don't know where we would be if he wasn't so good about it.
Well nothing much is going on, which the quieter the better as far as I am concerned. We are hoping if the test thursday looks good, we can come HOME HOME this weekend!! We are so anxious to get home and start to have a normal life again, or at least as close to normal as we can.
He had a good time at the hospital today because there was another kid (a teenager) getting an IV at the same time so they played the game cube against each other. Much better competion than me! Owen actually lost some matches. Everytime he lost he had to "change" the course or his player or something because he just couldn't believe he lost!!!
Owen is watching some science videos on dinosaurs, he figures this is his homework because he is learning all about dinosaurs and the earth, it is a real educational video.
Owen is eating great and even drinking alot. We need to keep getting around 40 oz in him a day. He still fights the medicines but we do eventually get them in. I have quite a few gray hairs now!!! I thought Tyler was high maintenance, but he is a piece of cake after having to give Owen his medicines!!!!
Mrs. Vasquez (his teacher) came for a visit today. Owen was quite full of himself and feeling very good. He was working on re-writing his Santa letter, hopefully to show her he is working on his writing but I left him while I updated this and when I got back she was here and he wasn't too far on his letter. Grandma pat had called while I was gone and he told her he was watching Rugrats - so much for writing. I need him to finish it and get it in the mail before he changes his Santa wishes - I hear Santa already has done his shopping and we wouldn't want it to change. He had a nice visit and was very silly, back to normal more like it.
Have a great day!
Today started fine, we went to the hospital to get our IV fluids and they were doing a blood draw to check his cyclosporine level. It had been high so he did not have to take that medicine last night or this morning until they got the blood work back and adjusted his dose. This is the medicine that keeps his and Jake blood from reacting to one another. He was fine and happy as can be there. We came back to the house where Jake and Grandma Pat were waiting for us ( they had spent last night). We ate lunch and then Papa Fred and Grandma Lea came. They played a spiderman board game and all seemed fine. Then Owen started getting warm. He was low - 99.2 but I started taking his temp every 1/2 hour. He got up to 100.4 and 100.5 is the temp we have to call the doc about. Then his temp went back down, but the next time I took it, it was back up to 100.6 I called the doc and was told to bring him straight to the ER. She called ahead so we were rushed right in. I left Dad and Leanne at the RMD house to watch for Chris because he was on his way up with Tyler who was going to stay the night. Well poor Ty did an about face and rode home with Papa and Grandma and Chris came over to the ER.
They took a bunch of blood, a nasal and throat swab to run cultures on. They then gave him an anitbiotic thru the IV and gave him Tylenol. He had to have an xray of his chest too. Everything came back negative for infection. So they are thinking that it may have been triggered by the 2 doses of cyclosporine they had him skip and the Graft VS Host flairing up because he had a pink tinge over his arms and back too. Or the blood test showed his white blood count was up to 4.7 which is normal!!! And by that coming all the way back can trigger a fever also. I asked if we should be concerned that his white blood count went from 2.7 to 4.7 in 2 days and she said no not necessarily, that is not unusual. So we have to go back tomorrow morning and have more blood drawn and re-tested. If he spikes another fever we can give him more tylenol, we just need to watch if the pinkness in his skin gets worse, chills, shakes, or other pains then we will go back tonight. So far he seems to be doing fine. We are definately staying in our isolation sitting room though. We were letting Owen go up in the kitchen if no one else was around, but this really scared up and we don't want him anywhere there may be some germs floating. Mom had also heard the people at the house talking to a guy who said he just got over the flu, and his girlfriend/ wife had it now. So she is confined to her room now, they should not even be staying here if they have a contagious disease, but since they are already in they are letting them stay. So that makes us nervous too!!
Today was just a little too much excitement for me! We have kind of been spoiled with how well Owen has done, but tonight sure brought it all back on how things can change, and how fragile he could be!
The Ronald Mcdonald house had a very good dinner put on by a local group. It was very good with all the trimmings just like home. But it wasn't home so even though it was nice, it just wasn't the same. We were able to eat in the downstairs room because Owen couldn't be around all the people upstairs so it was just our family but "theres no place like home". Owen ate quite a bit and then he started feeling much better so I think it was an eating issue earlier.
Chris took Tyler home with him and I kept Jake up with me and Owen. Jake is much easier to keep in our downstairs sitting room than Ty because Ty knows the house and wants to be everywhere but where you want him to be. After everyone Owen wanted a "snack" which consisted up ham,turkey, mashed potatoes and jello. Quite the snack. After he ate I put Jake down for a nap, took Owens dishes upstairs and came back to Owen sound asleep! So he took an hour nap, that 7:00 stuff just wiped him out. When he got up we played scrabble jr. which he really liked (guess he doesn't realize its like doing spelling in school!). Jake got up and Owen made him his side-kick Robin and they were off fighting criminals! Jake kept his cape on but the mask didn't stay long. So we had a great night and a lot of fun. Owen ate again at 9:00 at night, another full meal. He said this was the best food ever! I guess he really missed home cooked meals after eating hospital food for so long!
We are back at the hospital now for blood work and some more IV fluids. Hopefully we have gotten enough liquids in him that we won't have to keep coming back for the fluids. I told the doc if she let us know how much to get in Owen a day we would make sure he got that. He has been itching a lot more and is starting to irratate his skin. I am going to get a bendryl cream to help stop him from itching. Before we were just using lotion but the doc okayed the benadryl. Other than that Owen is feeling good and is quite happy to be at the house. His white blood count is up to 2.7!!! Over half way there! His platelettes are up and everything looks great!
I will be able to update the website from the RMD house but I can't upload pics because I have to use their computer, you can't dial out on their phone lines. So I uploaded some pics today but will not beable to change them for awhile. I will figure something out!
Have a great
The Ronald Mcdonald house had a very good dinner put on by a local group. It was very good with all the trimmings just like home. But it wasn't home so even though it was nice, it just wasn't the same. We were able to eat in the downstairs room because Owen couldn't be around all the people upstairs so it was just our family but "theres no place like home". Owen ate quite a bit and then he started feeling much better so I think it was an eating issue earlier.
Chris took Tyler home with him and I kept Jake up with me and Owen. Jake is much easier to keep in our downstairs sitting room than Ty because Ty knows the house and wants to be everywhere but where you want him to be. After everyone Owen wanted a "snack" which consisted up ham,turkey, mashed potatoes and jello. Quite the snack. After he ate I put Jake down for a nap, took Owens dishes upstairs and came back to Owen sound asleep! So he took an hour nap, that 7:00 stuff just wiped him out. When he got up we played scrabble jr. which he really liked (guess he doesn't realize its like doing spelling in school!). Jake got up and Owen made him his side-kick Robin and they were off fighting criminals! Jake kept his cape on but the mask didn't stay long. So we had a great night and a lot of fun. Owen ate again at 9:00 at night, another full meal. He said this was the best food ever! I guess he really missed home cooked meals after eating hospital food for so long!
We are back at the hospital now for blood work and some more IV fluids. Hopefully we have gotten enough liquids in him that we won't have to keep coming back for the fluids. I told the doc if she let us know how much to get in Owen a day we would make sure he got that. He has been itching a lot more and is starting to irratate his skin. I am going to get a bendryl cream to help stop him from itching. Before we were just using lotion but the doc okayed the benadryl. Other than that Owen is feeling good and is quite happy to be at the house. His white blood count is up to 2.7!!! Over half way there! His platelettes are up and everything looks great!
I will be able to update the website from the RMD house but I can't upload pics because I have to use their computer, you can't dial out on their phone lines. So I uploaded some pics today but will not beable to change them for awhile. I will figure something out!
Have a great
Owen has been itching a little since yesterday. He has a little bit of a pink tinge to his skin which may or may not be a rash developing. We will have to keep a close watch on it. This could be the start of that Graft VS Host disease that I have mentioned. A little of this disease is good, it is a reaction of Jake and Owens cells, but a little is good because it will cause the cells to search and destroy any bad cells in the body.
Owen got to take a tub here which he loved. He only had a shower at the hospital so he was looking forward to a bath. He is now dressed in his halloween costume - Batman of course and is defending our sitting room from any criminals. There is not too many families here right now which is good we don't want him around alot of people. The volunteers for the night have their 2 boys here with them so I am letting Owen play superheroes with them but he does have his hospital mask on which really ruins the costume and he is not very thrilled with me right now. But I would rather batman looks a little different than we end up sick!!!
Everyone have a great Thanksgiving and god bless you all!!!
We are very thankful this year and this is going to be a very special holiday.
We will have to come to outpatient twice a week for a while. Next thursday they will do a bone marrow aspiration to check Owen's bone marrow to determine how well Jake has engrafted in his marrow and to make sure Owens marrow is not producing. He will also get his first dose of chemo injection to his spinal fluid. He will need 4 of these, 1 every other week. This is to kill off any remaining leukemic cells that may be hiding. If there is any this is usually where they would be.
Owen has written his letter to Santa, he wanted to get this out in plenty of time because we will not be able to go to the mall and see Santa. I am making him re-write it though because he seemed to forget about spaces between the words and it is very hard to read. I want to make sure Santa can read it!! The mall is a BIG off limits to Owen because of the number of people that go thru there. He will definately have alot of limitations this year. Another is no skiing. He was very sad about that, he just discovered he liked it last year and couldn't wait. But any sport or activity where he could fall of bump his head is off limits this year.
So we are jumping up and down with excitment here and can't wait to go, even though they take great care of us here and Owen will definately miss his new friends, we are so glad to be being the next step on our way to home.
I have changed our address for the hospital to the Ronald McDonald house, and the phone number there. I do not know the number directly to our room yet. Talk to you tomorrow from our new home!
Owen woke up again with a very barky cough. It goes away after being up for a little bit but they are going to keep an eye on it. Two more medicines were switched today, one is a pill but can be crushed to go in pudding, the other is a liquid and goes down well with red mountain dew. So we are getting closer only one more medicine to switch. The doc says we will be able to get discharged to the Ronald McDonald house on Wednesday if everything goes well over the next two days. She said things can change over night in this type of illness but so far everything looks great. So we are hoping things stay great and we will have a Great Thanksgiving with alot to be Thankful for!!!
We played alot of tag and freeze tag today with the nurses. Owen was running around several times today. He is off the IV pole most of the time now so it provides lots of free time for running. The other patients wish they had just a tiny bit of his energy!! We have to take breaks when they come out to do laps so Owen doesn't knock them down as he's running wildly.
He was back to being constipated but he had 2 BM's today to hopefully we are back to normal and cleaned out again. We are off the stool medicine for now so that takes care of 2 medicines a day which is nice. Owen actually did very well with his medicine tonight. He has 4 he has to take twice a day. So for Owen that is about 2 hours worth of medicine!! The nurse brought in his night time meds at 8:30 and said we needed to get them all in by 10:00. She came back at 9:10 and we told her they were all in. She couldn't believe it.
We had some more good news today. This has to do with Tyler. We have been on edge lately because his last blood test that monitors his thyroid condition came back with some raised levels for a disease called Celiac. This is a disease that doesn't allow his body to process certain nutrients. If not controlled it can lead to intestinal cancer. It is controlled by diet. Wheats, oats, and barley have to be eliminated from the diet. For Tyler this would be a nightmare. He lives on pancakes, oatmeal, pasta, yogurt... everything made from these. Lets say I was ready for a nervous breakdown to have one more thing tossed into our lap. Well we re-tested him and only 1 of the 4 tests came back elevated and not as high the first test. So we will have to repeat the test in 3-6 months. He may still have it, it may be in its beginning stage but for right now he does not, and we do not have to do anything. Modifying his diet will not prevent him from getting it. If he is going to get it, he will regardless of what we do now. So the doc said instead of stressing him with a dramatic diet change just to watch him for any changes, especially diahrea, otherwise we will wait to re test him in the spring. So can everyone spare a few more prayers and thoughts for Tyler and just hope he does not end up with this, for all of Us!!!!
Well pill taking was not so great. He was already a wreck just thinking about it when the nurse brought it in. I finally got him to try, the pills are small and gel type but unfortunately there was 4, so he was already stressing. But as soon as he felt the pill in his throat he started choking and spit up what little bit of pudding he had just taken pill and all. So he will have to do the liquid which doesn't taste great. But thankfully for his first try Mr. Jorgenson was here (his teacher) so that is always an inspiration for Owen. He did it like a champ and his nurse had to jump up and down on one foot 20 times for Owen doing it! Wonder what we will have to do tonight, Mr. Jorgenson isn't here and our jumping nurse is gone for the night!
It was a day of magic here. Owen showed Mr. Jorgenson all his new card tricks and totally amazed him! Then Owen shared his secrets, he just couldn't help it. Mr. Jorgenson taught Owen a new one too that he'll have to try out on the nurses now.
Grandma Pat was here today too, she hung out with Owen while I went to the Ronald McDonald house to switch our rooms. We are now moving to the ground floor where we will have access to the private livingroom area. This is in preparation for Owen to come back to the house where he will need to be kept in isolation from everyone else in the house. I checked with the doc today about being out of here by Thanksgiving. She said probably not, they need to monitor him for a few days on the meds they switched to mouth. But possibly a day pass on Thanksgiving day to go to the house if we would be in the isolation room and could eat down there so he would not be around everyone else. The Ronald McDonald house said we would be allowed to eat down there (usually food is only allowed in the kitchen/dining area) if it is required by the doc to stay out of these areas. They do a big dinner that day so we wouldn't have to do anything. So heres hoping Owen gets to enjoy Thanksgiving.
His counts are still going up. His white blood count is 1.1 and his total ANC is 300 and his red blood count is 4.0 (normal). So we are getting there and he is looking good. The doc described him as "better than textbook" today. She said he has just done great and for him not to have had to go on anitbiotics for infection or fever is unheard of. I said well he did get a fever one day. She said he didn't have a fever he had a little "glitch", but since it didn't last they wouldn't even consider it a fever. So good for Owen, we just couldn't be happier, and in a way scared, because it is like "when" are the falls going to come down? But hopefully they never will!
Have a great night and I will write tomorrow!
Well I am back after a great night and day with Tyler and Jake. They really enjoyed being home and with mom. Tyler got to stay up late - 10:00, but he definately needed a nap today when I left him. We even dug out a few christmas decorations. We put our stockings up, our mechanical Santa Claus and of course the singing Douglas fir. He would be left out all year if it were up to Tyler, and he would be in the garbage if it were up to Chris!
Well nothing but good news back here at the hospital. Owens white blood count is 1.0 (almost there) and his ANC is 230 (1/2 way), his red blood count was normal. They are going to give him his last dose of cyclosporine by IV tonight, tomorrow it gets switched to pill form, that should be interesting. This is a medicine that helps control his immune so Jakes doesn't take over too fast, and to help control Owens so it doesn't reject. We were working on taking pills at University, but then never really needed it, I'll keep you posted on this task. But we will slowly switch all meds to pill or liquid form so we can get discharged. His eating is getting better, he had an egg Mcmuffin today, minus the muffin. We had rice krispies later, and now we are going to have some Spagetti O's, when I read his messages to him, Garret suggested them and they sounded good to him.
Owen had a very special visitor today. His Aunt Susie came up with a friend Bobette who has a nephew that plays on the University of Rochester football team. Well she had one of their games on the radio dedicated to Owen a week ago and now she brought up a football signed by all the team, plus UofR shirts and sweatshirts, and a bunch of great gifts. He got Magic Cards so look out Mr. Jorgenson he has been practicing!!! Might be a late night of practicing, not that every night isn't a late night!!
No fevers today!!! We are back to our normal perky self. We ate KFC again, and some blue gatorade. I haven't figured out how to return his teeth to normal color.
We did have to have a blood transfusion today because of his red blood count, which is okay and normal. His white blood count went up another .1 so we are up to .4 Our total blood count was up to 128 - we broke the 100 mark. Our goal is to get to 500, even though that is still low it is out of the "danger" zone for his immune system. So now that Owen is eating a little (still have to work on it) we may still get out of here by next week!!
Owen had a special visitor today. A boy named Christopher came to visit who had a bone marrow transplant 5 years ago. He brings presents for the kids and he brought a bunch of video's. He said that was something he thought the floor needed more of from when he was here.
I am actually going HOME tomorrow, I have not been there since we left for Rochester on Oct 28. It will feel great to sleep in my own bed and be in my own house. Tyler and Jake will come home with me for the night and some mom loving. So don't be alarmed if the journal doesn't get updated on Friday, it is because I am enjoying my boys and enjoying being home. I promise to update early on Saturday though. I will return to the hospital in the afternoon. Owen was sad at first but after we talked he was okay, he is usually pretty good about turning on the guilt factor so I am glad he did not. Papa Fred and Gramma Lea will be up Friday night so that will help, he won't even miss me! Plus I told him the next time I go home it will be with him. Yeah!
So we finally got a fever. They took a blood and urine culture and will see if any kind of infection is going on, but for now unless he spikes a higher temp they are not going to put him on any antibiotics, they just gave him tylenol. Owen fell asleep and slept until 8:15. He woke up feeling good and after a little bit of prodding he decided at 8:40 he wanted egg salad. Now the kitchen is closed! So I started looking thru some menus for a sub place still open with egg salad, I found one but had no idea where it was, so I started working on Owen to switch to something different so I would know where to go. I said how about mashed potaoes from KFC, now that sparked him, he thought he would try some chicken. Great!!! Off I go - just as I pull into KFC all the lights go out. I run in the door in a panic pleading for some chicken, everything was already put away. They must have thought I was a lunatic, after they all finished give me the look over they decided I could get some chicken and went and got me a bucket of chicken, they even threw in some mashed potatoes and bisquits. Back to the hospital, and guess what.... he ate!!!! Two pieces of chicken. So now he "knows" he can eat KFC and he wants it everyday, he says I'll have to go get more... If he'll eat it I'll go beg everynight!
His fever has not returned yet so that is another good thing, and the tylenol would have worn off by 9:30 and it is now 11:00. Needless to say we played no tag or anything today, hopefully tomorrow finds him back to normal! His white blood count remained the same .3, his platelettes went up 6 to 27, and his red blood cells (hemacrit) dropped to 25 so we may need a blood transfusion tomorrow. It is normal for his white blood cells to come back first and then his red.
Well with his 3 hour nap he will probably be up till 3am again, I am going to sleep so he'll have to watch tv. He'll try and keep me awake for awhile until he realizes it is useless. I can't believe he keeps me up this late!
Well another good day. It got off to a little rocky start because we are back to having to take our medicine since our feeding tube is out, but right now he only has one medicine to take. He immediately threw up after taking it. He gets so worked up over taking medicines. We switched this one to a pill and mixed it with chocalate pudding and that worked.
His counts went up a little bit, I put it below with the norms to put it into perspective to show you how far we have to go....
His white blood count is up to .3 (normal is 4.5-11)
His platelettes went up another 2 from 19 to 21. (normal is 150-340)
Hematocrit is 27 (normal is 42-50)
His total ANC is 60 (normal is 2200-4800) Below 500 means he is still very vulnerable to infections.
We don't have to get all the way back to normal to be released but we have to get to a "safe" count. However we were given our Discharge pamphlet today! What this means is we need to start preparing. There is alot of information we need to know what to watch for, when to call the docs, and all the precautions we need to take once released. He will be on a lot of restrictions, especially for the first 100 days post transplant, and then others for the first year. So we are learning about these and will go over all this with the nurses and doctors in the next several days, and then just wait for Owens counts to be at a stable level.
They still think he will get a fever over the next several days as his counts come back and his body starts learning to fight infections again. We are on the watch for any Graft Vs Host disease ( the rejection issue ). So depending on what happens will determine how many meds we go home on. For our sanity sake I hope its not alot!!! But we will do what we have to do.
Owen was excited when he was told he may possibly get a "day pass" soon and be able to leave the hospital for a little bit. Probably just to go to the Ronald McDonald house, he can't really go any where because we can't be around alot of people and in November there is not a whole lot to do. But that certainly brought a big smile to face!
Owen had icecream, egg salad, and gatorade today. Quite the menu! I brought him back an ice cream sundae when I ran out to get some subs and he didn't want it! I bet there is alot of kids out there who would love to be in Owens seat and able to eat ice cream all day and not be in trouble for it. He has to be hooked up to the IV tonight, (last night he was "free"), just to get some extra fluids in him while we work at getting his food and drink intake up.
Thankyou again everyone for your notes, we love reading them and they keep us going!!! Thankyou for everything we have a great support network out there and we appreciate every single one of you.
Well another great day! Owens counts stayed the same, but his platelettes which have been dropping by 10 or more a day since his platelette transfusion went UP 1, so another sign things are going on inside him! His feeding tube also got clogged with his constipation medicine, (yes we still have that nasty thing going on), the nurses tried and tried to unclog it with no luck. So we begged and pleaded with Owen to try and eat something because otherwise it meant putting a new tube in. First we tried a fruit smoothie, then tomato soup, then jello. They didn't hurt but they didn't taste good, which all the treatments he has received can change your taste buds and make things taste tinny. So then we tried chocalate ice cream and Success!! So we removed the feeding tube!! It hurt a little coming out, but boy were we happy when it was out. He was so excited, he said that was why he couldn't eat, because of the tube. We need to keep him eating and drinking though so they won't need to put a new one in. But I think now that he realizes it doesn't hurt it will be just the process of easing him back into eating. He did order mashed potatoes for dinner and he ate half.
Then after he ate the other great news happened! We had a BM!! He is no longer constipated. And boy was he proud, a true man!!!
So if things keep going the way they are- maybe, just maybe we could be Home for Thanksgiving or at the Ronald McDonald house!! Keep up all your prayers and thoughts they are working! We have a long road to go, many years of tests and monitoring and potential problems but I feel so good about this, Owen has just done amazing and has got everyone smiling!
We did some more homework again tonight - I told him Mrs Vasquez wouldn't let him leave the hospital until all the pages she had circled in his book were done. He of course he did not believe me, "Mrs Vasquez wants me to come home she wouldn't make me stay" But he did do his work anyways!
Well today was a celebration day!!!! Owen has a blood count!!! His white blood count is .2 (low but it is there!) and his total blood count (ANC) is 70 so he is on his way back - or Jake is on his way! Today is also the day that Owen picked for his counts to start coming so he wins. We all told him he was guessing way to early but I guess he knows what his body is doing. So this is just great. Usually counts will come in 14-21 days post transplant and the doc was guessing more towards the 21 for Owen. We are on day 12! So needless to say we did a lot of celebrating today. His counts could go down and up as they are rebuilding but as long as we know we are on the road to home!
We now have to be on the look out for Graft VS Host disease. This is where Jake might reject being in Owens body or Owen may reject Jake. Mostly we are on the lookout for rashes. A "little" of the GVHD is not bad it will actually help fight and stray leukemic cells in his body but we want it to be MILD, because it can be a serious reaction.
Owen actually had a pretty busy day. He played game cube (surprise), did some arts and crafts, and then we did some school work, then we played Clue Jr., off to play tag around the nurses station and then we played match boxes. He is now taking it easy and waiting for the Wizard of OZ to come on tonight.
Hopefully this will tire him out, he was still awake last night at 3:20AM! He woke me up for a tissue, I couldn't believe he was awake! I turned the TV off to his protests! He did take a nap yesterday from 5-9 so that did not help with getting him to bed.
Here to some even higher counts tomorrow!!!!!
Owen had a good day yesterday. His tummy felt "funny" off and on. He is still constipated, and they are working on that with meds. They just want to be careful because it is usually diahrea they have to watch for and they don't want to trigger that off while trying to soften him up. He had to return Hulk as we just rented it, but he got Wario World from his cousin to use and he likes that, so we can forget about talking to Owen for the next couple of weeks. I bought him a new 1st Grade multi subject work book, but he didn't look as happy about his present as he did the game cube game....
His tummy continues to bother him on and off today. He did throw up once, and they have given him something for his stomach. His mouth sores do seem to be getting better though. He says it doesn't bother him to swallow as much. The nurses said the sores could be moving down into his stomach and esophogus and that is why his stomach feels weird. The other possibility is his white blood count may be coming back. We won't see it in the numbers at first because they will be fighting the sores as fast as they are produced and therefore can't register in his blood count. I hope that is the case!!!
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The snow was just Awesome today according to Owen. It was coming down pretty good but it just covered the ground, you could still see grass. When Owen heard we got more at home he was very excited.
Uncle Steve and Papa Fred came today. Uncle Steve brought Owen a Turkey call, so Owen has been practicing for when he can get out and go Turkey hunting again. He has no problem getting up at 4am for turkey hunting but to get up by 7 for school or before 11 here FORGET IT. He had the nurses laughing as he went for his laps today and was doing his Turkey call, and also calling Mike, our social worker to come. Needless to say Mike had to give him a little chase for that one.
Well we are at Day 8 (Eight days post transplant) and Owen has not had a fever. Every Nurse and Doc that comes in here just can not get over that! I keep trying to tell them we decided to skip over that whole part!
The mouth sores are no worse but are no better. He did not eat anything today, so they have increased his food tube intake. They figure he pretty much won't eat now until he knows his throat and tongue feel better. He did have one dose of Morphine today and that was this morning - he was just crying that his tongue was burning. They have decided not to start the continual drip of morphine for right now. He tolerates the mouth sores pretty well, especially now that he has stopped eating so they don't want to put him on it. If he were going to try and start eating again they would then put him on it to help. You mention food to Owen now and he freaks out.
He had a platelette transfusion today and will probably need a blood one tomorrow. But despite that he was still wound up and ready to go. He was very silly during music lessons today, he made up a new version of Home on the Range. He didn't want me to share it with you yet though.
Well I hear no-one likes my sense of humor. So I have become a little more warped after staying in a 10 x 15 room for weeks. At least I told you right away it was a joke. :-)
I talked to the nurse for a while and we will probably see the mouth and throat sores still get worse over the next couple of days, and then they will start to turn around. They may possibly put him on a constant drip of morphine, this will kind of level the dose of morphine over the entire day and will not make him as spacey and this may help level his discomfort and he may eat. It kind of makes me nervous to put him on the constant morphine, I will have to talk it over with the doc. Although we didn't want the feeding tube either and thank goodness we did that.
Owen still has plenty of energy though. We did our game of tag tonight and then had our music therapy, and played on the computer for awhile. He is probably going to be getting a platelette transfusion tomorrow because those counts have gotten low, which is normal, but they like to keep you at a certain level until Jakes blood takes place and starts producing.
Well I did my good deed and went down to donate blood. They kicked me out though my hemocrit level was too low. Not a health concern, but not where it has to be to donate. They said I need some more iron in my diet. I tried, I will have to wait a couple months to try again.
Around 4:30 we made him get up and take a shower. After about 10 minutes in the shower he said he was feeling better. After another 30 (yes he takes long showers) he was done and a brand new kid! Papa Fred and Grandma Lea had arrived so we went for our "laps" around the nurses station. He got running and laughing. He was playing tag and hide-n-seek with Grandma. The nurses and us could not believe this was the same kid we watched all afternoon!
He ended up eating animal crackers. Again I don't understand why somethings hurt and others do not. The nurses told me you don't try and figure it out you just let him eat what taste and feels good for him.
He is still up and feeling good, eating ice chips right now. Tomorrow there is a blood drive and I am going to go. Yes me for those of you who know how bad I am about that. But Owen has needed his share of blood and will probably need more so I guess I need to give back to those who have helped us! I'll be in the recovery area for awhile I'm sure!!!! :-)
He takes morphine before he eats and that helps, but then he is quite the "happy" boy for a while after that. He continues to be very happy and is amazing everyone. He was playing tag with his nurse today. They just love having a kid on the floor, it brightens everything up, especially one so energetic.
We rented the Hulk game cube game so he has 5 days to beat it. Harry Potter is just so easy now you know.
His blood counts have bottomed out he is at zero. This means that he no longer is producing anything, so he has no immune system at all right now until Jakes marrow "engrafts" and starts producing. Which is still 1-2 weeks away. They keep expecting him everyday to be tired and a possible fever, but Owen keeps proving them wrong. He gets up between 10:30 and 12:00, then stays up until midnight. I on the other hand go to bed, I have to tell him to stop talking to me because I am going to sleep!
Keep up the messages he loves them!!
t
Owen has definately started developing the mouth and throat sores. He woke up this morning with a sore throat. He couldn't eat because it hurt to much. He was able to do ice chips. The nurse gave him some Morphine and this made him kind of spacey but he was able to eat. Unfortunately they say these will get alot worse before better.
Other than that he is in very high spirits. We galloped around the nurses station today because that got his "laps" done alot faster. We are just about to do some homework so his teachers don't think we are up here slacking off... :-)
In case anybody missed it there was an article in the Citizen today on our transplant day. It was not online so I have to wait until tomorrow to see it.
I just ordered more Owen pins as it seems everyone is looking for them, they will be going to Dads house so he'll be in charge of getting them out to you.
Owen loves the messages everyone is sending. He said "It's a good thing I got sick so I can get all these messages." Along with the fact that he is "famous" in the paper. I told him I would rather he wasn't sick and so does everyone else!!!
We were freed from the IV pole for about 1 1/2 hours this afternoon. So he headed up a band with some of the nurses and made them do the hokey pokey. He had a little bit different version (put your big butt in...) - he is his fathers son!
His tongue has gotten white which is a sign that the mouth sores are coming, but not to what severity they will be. The docs tell us fevers etc could also start setting in now, so we are on the lookout for anything.
He had a feeding tube inserted today. It is a small tube they insert thru his nose down to his stomach in order to feed him or give him medicine. They are anticipating that the mouth sores that are so common should come about this weekend and it makes it hard for him to eat and drink. This will allow him to get the nutrients he needs and the medicines he needs. He was a little freaked about it at first. He was really worried that is would be "dirty" going thru his nose and then down to his stomach. He was fine while they put it in but then he really cried and was upset saying it felt funny. It was hard seeing him like that, everyone was holding back on tears. As the day went on he got use to it, and really liked it when they gave him his medicine thru it. He was really nervous about eating when it came time for dinner, but once he realized he could eat he relaxed a little.
The idea is that by using the feeding tube his stomach and intestines will still be used if he should stop eating and drinking. They needed to do it now, before his throat did get infected. He is a trooper though, it is so hard seeing another tube coming out of him though.
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