History

Tuesday, November 22, 2011 5:42 AM CST

It was a long day waiting to leave, I kept trying to think it is nothing it is nothing, but i think no matter how much you say it... deep down you are already crying and thinking the worst.

They didn't take owen in for the MRI until 3:30. He had to be injected with the dye first and then the scan would last about 45 minutes. He did great as always, technician said he was a pro... not sure that should be a status any child should have being great at these tests!

Then off to see the doctor. I was NOT impressed when he came in. He came in and said, 'so we are just seeing you for a regular checkup right?' My face must have dropped, I said NOOOO- you ordered a MRI to take a closer look at a spot on his xray. He looked at his notes and said he didn't see that!!!! I told him he CALLED me personally to tell me we had to come in for a MRI. Oh now he remebered... yeah feel that warm fuzzy feeling I am having about right now!!!!

Then he looked at the MRI and said that it was a Bone Infarct or dead bone, usually caused by steriods or radiation. 'Had Owen ever been on steroids?' UMMMMMMMM - yes!! He had leukemia - TWICE. Oh yes, he remembered now, he was the AML/ALL kid right?

You would THINK he should review his notes and who he is seeing before he comes in the room!!! I understand he is extremely busy (and supposedly one of the best) but honestly i was fit to be tied right now!!!

He finally gained focus and went into detail on the pictures and explaining the spot seen and finally made us feel like we were worthy of his time....

I guess the bottom line is.... it is NOT cancer!!!! This Bone Infarct would not cause the pain Owen is having and he needs to continue PT. Hopefully to strengthen his muscle and turn his knee back in so he walks more normal and that will eleviate some pain.

We go back in 6 months unless his pain gets worse. Hopefully he will remember us then!

It was 5:30 when we left and i went east on the thruway... yeah a little out it I think! So we had to head to Cannostota to turn around... didn't dare do the illegal turnaround with so much traffic at that time LOL

We will say an extra big 'what we are thankful for' this Thanksgiving!!!!!!!

Thankyou everyone, and hope you all have a nice thanksgiving and be very thankful for your family!!!

Angie

Sunday, November 6, 2011 7:30 AM CST

Little late in posting but wanted to update on this awesome event!!!!

Friday November 4,2011 was Owens 8 year Re-Birthday!!! That means it has been 8 years since his bone marrow transplant from Jake!! We are so happy to reach this day, can't believe it was 8 years ago. I can still remember every heart wrenching detail of those days. Seems like it was only yesterday we were fearing for Owens life.

I still go back and re-read parts of his journal, I am so glad that i did the caring bridge. Although I could probably write it still today, those days will never be erased from my memory.

I look at Owen today - 14 - and becoming every bit of a teenager - attitude and all! LOL I am so happy to be going through these 'hard' years as he GROWS up. He is a great kid and I think what he went through is part of why he has the great outlook on life and is the strong character that he is.

On the down side... he has been having alot of left knee pain. I took him back to Dr. Damron to have him re-checked. Dr. Damron took base-line xrays of all his bones a year ago. He took new xrays of just his knee to see if anything was going on. He did not see any changes. He did recommend Physical Therapy to see if that would help.

A day later I got the call from Dr. Damron, after closer review they did find what looks like a cyst behind his knee. He is recommending an MRI to get a closer look. Of course this sends me into panic mode.... but I am breathing and staying positive. I have heard from several people who have had this and am going with it is just a cyst and nothing more! Unfortunately Dr. Damron is going to be out of the office and the MRI can not get done until 11/21. So just need to be patient......

Owen went to PT last week at Barry Moochlers. He made me feel very good about the cyst. He commented that if Dr. Damron did not see it initially it must be very small and is nothing to worry about and it is actually quite common. He did see quite the difference in Owens' strength in his legs. Owen walks with that turned out duck walk and this is most likely the reason for his pain. When turning Owens knee into a normal position he had no pain bending it. When leaving his leg in the outward 'comfortable' position for Owen he hurt when his leg was bent. They are going to work on strengthening his mucscles in his leg and hip to help bring his leg into a more normal position to eleviate the pain. He will now go 2xweek to get PT.

Other than that, life is good!

Thankyou everyone for continuing to support our family, our journey has been a long one and have years to go with seeing possible side effects, but will get through those too!!!!!

Friday, August 19, 2011 5:26 AM CDT

Celebration time!!! Owen had his first KNOT's appointment. KIDS NOT ON TREATMENT!!!! Love that!

We left our beloved Dr. Cherrick as his doctor and are now seeing Dr. Sima. Owen was very nervous about this because he didn't want to leave Dr. Cherrick... but it is still a good thing and Dr. Sima was a blast. Very upbeat and she kept everything in perspective and with humor to it all. so i think it will be a good fit for Owen.

Yesterday was alot of tests... need to see how much damage the radiation and chemo has done to his body. He had a EKG, ECHO, alot of blood work, and a Pulmonary Function test. Won't know the results for a few days on those. We met with Dr. Sima for a short visit, next one will be a couple hours after she has had time to go through his 3 HUGE folders of history!

She told us of the initial high risk things that Owen will be at risk for, mostly due to the radiation. Cateracts, diabetes, and of course being sterile. We were aware of these, but due to getting TBI (total body radiation) and direct radiation to the testicles he is more at risk. She stressed how exercise is critical for Owen to lower the risk of Diabetes. He does very little today in the way of exercise so she has challenged him with setting goals... ONE day a week he will walk, swim, do WII fit, Kinects... anything. Once he does this for a while he needs to reset his goals.

Owens left knee has been really bugging him and he does use this as the crutch to why he can't do anything, but she agreed that doing moderate activities will HELP that, and we also need to get back into Dr. Damron to recheck that knee. We saw him quite awhile ago and he has a base line of where Owens' bones are at so we will be able to see if there is something going on with the one knee he is always complaining about.

Once she goes through all of the toxins (chemo) that were poured into his body over the years she will know what things he is at risk at by the amounts of each type he got. His next appointment will be in 6 months.

Owen is approaching 8 years since his diagnosis!!! That was a big celebration yesterday! Next Friday 8/26 will be that day... wow it is hard to believe that 8 years ago our world was ripped apart and now 8 years later i have a healthy 14 year old who has so far displayed minimal affects from the years of treatment.

His knee and then the way his feet point out and turn in are his biggest affects so far. Unfortunately the 'after affects' can come for years so will be watching for the rest of his life. She told us we also need to do skin checks, always looking for new moles, bumps, discolorations - the sooner we find them the better. She suggested we take pictures of his skin every couple of months so we are not second guessing if something is 'new' or not. I thought that was a great idea!! I barely remember yesterday now little alone months in between!!!

I will update again with any news from the test results, but hoping there will be no update - because they all look GREAT.....

Enjoy the last few weeks of our very short summer season.... we will be!!!!

Sunday, May 29, 2011 8:05 AM CDT

Hello everyone!!!

Time for my 6 month update :-)

Owen has just celebrated his 3 years OFF TREATMENT!!!! May 11,2011, which was also our 15th anniversay for Chris and I! So a good day all around.

Owen also turned 14 on May 22, 2011. Wow - I can't believe I have a 14 year old! What a long way we have come from what will be 8 years on August 26!!!

Owen does complain still of his knee hurting him, but myslef, the pediatrician and his Genetics doctor all keep telling him he must exercise! He sems bent on the 'surgery' that has been talked about one day for his bones will be the cure all. But he does not realize that is not! His bones are not strong enough, and he needs to build up his strength. But to Owen's defense the doctors have always fixed him, but this one he needs to work at it first. With summer approaching - at least I hope it is - if the rain would stop! He will be swimming and more active. We have been going out and playing catch everyday and he is going to start going on my walks with me, even if he has to turn around and go back before me. But I told him even if one day they determine he does need the surgery he will need PT, so exercise now, will help determine if there truly is an issue or if he just needs to build his strength.

Owen participated in St. Baldricks again this year and shaved his head. He raised over $1000.00 on the spot for the event! Next year he wants to get him and a bunch of his friends on a team and they will all shave, so we will see.

Relay for Life is only 6 days away. Owen has raised over $3600 and the Nucor team will be over $8800 with matching funds for money raised! another great year! Owen will be leading some games at the event this year and also will be playing his bass at the event. Check Facebook for the schedule when I post it! (I will try to remember to come back here too and post it :-)

While our world has been going well and enjoying life another family is fighting for their lives. Please check the link below for Michael McBride who needs all of your prayers right now. Michael is the son of Brian McBride (who I went to school with) and Aimme. Aimee is a beautiful writer and puts everything in perspective. her words are so true on how important today is and loving your child everyday and paying attention to the things in life that truly matter. Please keep the McBride family in your hearts.

Happy summer everyone!
Angie

Monday, October 25, 2010 6:40 PM CDT

Wanted to get back with all of you on the update with Owen's bones.

He has gotten his shoe inserts to help correct the turning in of his feet at the ankles. He thinks it feels weird to walk this way a.k.a 'normal' But has done great with them and never got the callous on his feet as he got use to them. His back hurts a little and that is from changing his posture.

Today we went for the bone scan to take a closer look at his knees and hips. We left the house at 7:30 and returned home at 6:30 - yikes a long day!!!

Had to pickup his xrays from Septembers appt on way to hospital. After arriving at the hospital they injected owen with a low dose of radiation (they said it was equivalent to the amount of an xray) directly into his vein. We were then free to go for 2.5 hours. So we headed to Dougherty's Masquerade and owen got his scary mask/ cape for halloween and he is also going to be in his friends haunted house next saturday at their annual halloween party. After we grabbed a bite to eat on University hill and I did a little SU shirt shopping - can never have enough SU shirts and with basketball season around the corner.....

Back to the hospital. Owen had to lay still on a table while an xray machine did a scan from the top of his head to his feet. The machine was only an inch from his face at the start of his head!! It took about 20 minues to go from his head to his feet. They had us come back in for some more scans of just his arms and his head. Then we headed to Dr. Damron's office in east syracuse. Our appointment was at 1pm but we did not even get into a room until 3, then waited another 45 minutes for him to come in!!!

Owen has Osteochondromas - bone tumors - as a result of the Total Body Radiation he received in 2003. I was very nervous of the word 'tumor' let me tell you!!! But doctor said this is very normal for people who undergo radiation. Since his knee pain did eventually go away he is not concerned. The Osteochondromas is prevalent all the way through his body - knees, hips, shoulders, arms. He sent Owen for a few more X-ray's to get several up close shots of each of his joint areas. Bottom line there is nothing to do unless the tumors give Owen issues. If he experiences acute pain that last more than 2 weeks or any of his joints swell we need to get back into see him. He has a base line from these xrays to know if it is getting worse. But other than keeping an eye on it there is nothing to do....

The nurse at the hospital raved about Dr. Damron and that he was 'the best of the best' and we were lucky to be seeing him. My vote is still out, basically I was not happy waiting hours to be seen and then by time xrays and re-consult was done with him we had spent 4.5 hours there and saw him for about 10 minutes. I felt he was 'put out' that we wasted his time when Owen was not having any pain now. I told him we had waited several weeks before even bringing him to Dr. Bright on 9/7/10, then didn't get an appointment with him until today. Owens pain in his knee stopped mid-september but since appt. with him was already in the works we wanted to keep it and make sure nothing was going on we needed to be concerned with. He did this recording into his phone for a memo of our visit as we sat there, felt really weird listening to him basically talk about Owen's leukemia history, the abnormalties in his bones and no future appt. needed unless patient were to have Acute Pain for at least 2 weeks. I felt like I was being scolded for being there.

Might be over reacting as I was quite grumpy by this time in the day and our long wait, but Owen said he got the same feeling and didn't really care for him. Dr. Cherrick and Dr. Bright will both get copies of our visits so I will discuss more with them about it.

As far as Owen's bone density he said that was for Dr. Bright or part of our long term care with Dr. Cherrick and he didn't need to be involved in that.

I am happy Owen is no longer experiencing pain. Forget what he did but the day before his knee pain he had been at his friends and they had been in the woods playing for hours upon hours the day before. For Owen who is very low activity it could have triggered the stress. So for now we just hang out and hope he has no further pain/ swelling and these bone tumors just hang out and cause no issues!!!!

At least we had a few laughs with Owen getting the radioactive injection. He kept saying 'Don't make me angry.... you wouldn't like me angry' LOL He is such a good sport!!!

Thanks for checking in and Happy Halloween to you all!!!

Friday, September 10, 2010 6:48 PM CDT

Well it has been awhile again! This time though I do have some news that I hate.... we are entereing Phase II of Cancer - the after affects.

Owen has walked with his feet pointing out for several years now and it is due to his flat feet. It is getting worse and I noticed his ankles are turning in drastically. He has started complaining of his knee hurting. I talked to Dr. Cherrick at his last checkup in august and she told me to go to the pediatrician and she would get us into a specialist that deals with this.

So off to Dr. Bright. She got us an appointment with a podiatrist but also wanted to get some xrays of his knees and hips. The xrays showed damage to his tibia bone in the knee and also some hip separation. All of it most likely related to the heavy steroid intake during treatment.

Today we saw the podiatrist - still waiting on the appt with the orthopedic surgeons for the knee/hip. But basically his feet are a mess. He is going to need inserts to help him walk correctly and we go back tuesday to get the molds for his inserts. The worst part about the visit is that when he took the xrays of his feet he told me he had the bones of an 80 year old man!!! They are so thin, paper thin... years of steroids... damn!!!! He has osteoporosis and external tibial mall dolan torsion - whew say that 3 times fast! We reviewed the xrays and two of his bones in his foot that should actually overlap a bit are separating. So as he walks the ankle is creeping to the inside, but the outside or his foot by his toes stays flat so it is pulling the bones apart.

Surgery is an option later once he is 5 years in remission, but due to how frail his bones are it may never be an option.

He feels his knee/hip pain may be related to his feet, as they get worse the pain is going up. He could see just by looking at owens legs in the sitting position how the tibia bone is turning out, and thus the pain - it is not suppose to do that. He says it is important to get to the orthopedic surgeons as they may have other solutions.

Poor Owen - can he catch a break!!!!????

I have so many question - NOW that I have left. Glad we are going back tuesday for the molds so I can ask.
Should he be golfing, skiiing, amusement parks, gym - what activities should he be doing - at 80 years old how easy can he break a bone, what would happen would they ever heal if he did?

As I was talking to the doctor I was explaining so much and nodding my head and making the right comments back I guess because he paused and asked me - Are you a nurse? I laughed and said, not officially, but I guess basically! He laughed and agreed that we get quite the education as we go through the years in treatment!

Owen and I walked out to a flat tire - could the day get any worse! I called Dad and he got Owen off to school while I waited for road side assistance. I started to get the spare out and the jack when they pulled up, the guy laughed, was I going to change the tire? I said I was sure going to try! I can't just sit around, I had to much on my mind and needed to stay busy!!! Needless to say he couldn't even get the lug nuts off! So he pumped up my tire and followed me to the repair shop.

So I guess this is just a taste of things to come. I so remember hearing all those 'possible side effects' as we went down the road of cancer but the thought was WHO CARES!!! I want my child to live!!! So here we are, very HAPPY that Owen is 27 months in remission, but looks like the bumpy road will begin again as we look at what all those drugs did to his body!

He is off tonight to a school dance, and I am so happy he is enjoying his life, his friends and being a normal teenager, attitude and all! LOL

We WILL get thorough this too, One day at a time! I will keep you posted on things!

Tuesday, July 13, 2010 4:30 PM CDT

Well I guess it is about time right!!!!

But no news is good news and things at the Wawrzaszek house are going well! Owen is 26 months post-treatment and can't tell you how good that feels to say it!!! I was really nervous at the 22 month mark as that was how far we had come from his first remission. August 26 will mark 7 years of the AML being in Remission!!!!! Loving that! Working one day at a time to reach that same mark on the ALL remission!

Needless to say the tolls of Radiation are now coming into play. Owen needs help to reach puberty. We started shots today. He only needs them once a month and I had the nurses train me so we did not need to head to Syracuse each month for a shot. Owen is actually 'excited' to start these and you know, be like the other boys his age.... I thought it was a piece of cake LOL!!! Owen did well, just got a little light headed after, I think he worked himself up just a touch about the needle and me stabbing him! Guess I can't blame him - I remember the day where I would practically faint at the site of a needle. My mom had to go to every appt I needed a shot or especially blood work and hold my hand, regardless I always had to lay down after! Today, I have no issues with needles and have accessed Owen for blood work and now giving him shots! What a long way....

Owen may eventually need growth hormones as well. His 'bone-age' is 11 1/2 so he still has time to sprout on his own. Doctor feels he will not see his sprout until about 15. We will keep taking images of his bone growth about every 9 months to make sure his bones are not ready to infuse and thus his growth stop. Need to find that happy medium so we help him if needed but hopefully he will grow on his own.

Jake and Tyler are busy in Freedom Camp and Owen will attend Camp Good Days the first week of August. Other than that we have been enjoying life and living by the pool!!!

On a sad note my life had been touched with losses of some very special people.

My Grandma in Canada passed away on July 4th after a mild stroke. If was very unexpected and my mom was headed out to help transition her to a nursing home. Unfortunately either the Canadian health care - who I am very unhappy with!!!! or her non-desire to go to a nursing home decided differently. I lost my grandma who I love very much and wish I had been able to say goodbye. We had a very large family reunion last year in canada with all the grandchildren/ great grandchildren so I am so happy we had those weeks together. She will be back with my grandpa who she has always missed very much. LOVE YOU GRANDMA!!!!

Today I found out one of my Mom's Groups son's passed away after a very very tough battle. He fought like a champ but his immune system just could not fight the battle raging inside of him. Please keep the Witkin family in your prayers.

Thank you as always for following our story and being our suppost system!!!!
Angie

Wednesday, April 14, 2010 7:18 PM CDT

Well it certainly has been awhile and spring is coming fast! Loving this nicer weather, it feels so good to be outside again! Without coats that is!!

We had a good winter though, Owen took an interest in skiing again. He went before he was diagnosed and loved it and we just have not made it back with the years of being sick. So we went several times this year and he is in lessons. Needs to get some courage but he is liking it and I was loving being back on the slopes! Jake also went twice and Tyler once. Tyler liked it when I was with him, but wasn't too fond of doing lessons and I was exhausted with holding him down the hill!

Next week is spring break and Mom and I are taking the boys to NYC. Should be interesting :-) Definately hitting the Natural Museum of History and not sure what else yet. We are staying right in Times Square.

Owen shaved his head again this year at the St.Baldricks event. They passed the bucket at the event when he asked to shave his head there and raised over $400 on the spot! He is such an amazing kid and loves to be in the spot light and give back!

Owen's checkups are going great. He is 22 months OFF TREATMENT!! How great is that !!! This month he will get his bone growth checked again to see if he needs any help in growing due to the radiation. Last year his bone age was 10.5 so they don't start medicine until his bone age is nearing 12 years. He wants to start sprouting and reaching puberty sooooo bad!!!

Well it is that time of year again and Relay for Life has started up! Nucor will again match all funds so great time to double your money!!!! We appreciate anything that you can give, I know times are rough! We also have the Luminara Bags to use to Honor/Remember a loved one who has dealt with Cancer. These will be put around the track for the luminara ceremony and lit with glow sticks. If you have ever been to this ceremony you know just how touching it is! This year they are also asking to have a photo of the person the bag is for so that a Scrolling list of names and pictures of the people this event is for can be seen. Please let me know if you are interested!!!

Owen and his friends are going to run some games at the event for Relay in addition to things for the Nucor team. So nice again to see him volunteer to give back!

I need to call Applebee's - I think we are going to see if we can do either a Car Wash or Pancake Breakfast there as a fundraiser and will keep you posted on that!

The link to Owen's site is below, or you can also donate thru facebook on my profile or Owens.

Thankyou everyone!!!!

Thursday, February 25, 2010 7:07 PM CST

Well it certainly has been a long time since I touched base so here I am!!!

Things have been going well for the most part. Owen has had a rough winter of it. The flu twice, bronchitis and now he has some other sort of infection most likely sinus. He has missed a ton of school. Most of it legit due to the illnesses above. But there have been times he would cry he was sick and really ended up fine, he was just very tired. He gets me every time though. When I have had it with the just not wanting to get up and claiming he is sick and read him the riot act, he actually is sick!!! I can't win. I know all of these are normal sickness and it is winter, but it still doesn't stop me from wondering and my mind drifting of 'why' is he getting sick so much??? All his blood work is beautiful so that is all we can focus on and be VERY VERY happy about that!!! Owen goes back for a bone scan in April to re-check his bone growth and whether he needs help growing. Last year his bones were at 10.5 years, so they let him go. When his bones start nearing 12 years old they will have to start giving him hormones. Around 12 your bones start to fuse and would mean he would not beable to grown on his own.

The stomach bug went through our house and believe it or not Owen was the only one NOT to get it!!! I am still not sure if I had it or not because I was sick one night, and slept most of the next day, but once I got up I was fine. I think mine was we ate burger king the night before - yuck!!! I have not eaten any fast food for a few months, I am off the junk ride, and I think my body was retaliating.

We have been having fun despite all that this winter. We have gone skiing 3 times. Owen all 3, Jake twice, and even Tyler went once! They seem to like it, although Tyler only wants to ski with me helping him, he doesn't like the lessons or having to learn how to do it himself! I will keep working on him!! So this was the trial year, and looks like at least Owen and Jake will want to continue so we will look into buying for next year. I do hope they stay in it, I have forgotten how much I like going!!!

Chris, me, my Dad, Leanne, Chris's Dad and Lee are all headed to NYC March 10th for the Big East Tournament!!! SU is looking awesome this year and we are really looking forward to this! I am attending a benefit on Sunday for Lucas Mallory http://www.lucasmallory.com/index.html
and they have a Syracuse Basketball signed by all the players as an auction item.... I want it!!!! My husband is already lecturing me on not being with my bids!! :-)

For the Kids April Break, my mom and I are going to venture to NYC with the boys. We will hit the Natural Museum, staue of liberty, toys R us and who knows what else. We are there 3 days, so should be fun!!!

Thanks for checking in on us!!!

I am also on Face book so send me a friend request if you are on there!!!

Sunday, January 10, 2010 8:29 AM CST

Happy New year everyone!!!

Just wanted to check in. We had a wonderful christmas and new years. The kids were happy and got along for a few day... ha ha. New Years eve I spent with the kids at the movies and playing and then out with friends for the night.

Looking for an awesome 2010. Owen will reach 2 years off treatment in May. This brings some fears as well as after his transplant he went 22 months in remission, so as we near this milestone we pray we pass it and on to the 2 years mark!

He is doing well, he has gone through a period of back to the nurse daily at school and after the start of the new year the school and I are working on really minimzing his trips and forcing him to stay in class. So far so good.

I started a work out routine, and Owen is following in my footsteps. I am hoping this will help him feel better about him self, he is very conscious of the weight he has put on. He seems to be liking the Wii Fit, although the junk food munchies continue so I am minimizing how much is in the house. He tends to reach for the junk before the smart snacks. What kid doesn't!!!

SU season is in full swing and we are enjoying that!!

Owen doesn't go back to the doc until February. I have to take him for blood work to check his testosterone levels again to see if he is ready for 'help' or if we can let him go on his own still.

Thanks for checking in on us and hope you are all having a wonderful New Year!!!!

Tuesday, December 15, 2009 6:13 PM CST

check out the link below to our family Chrismas Pics this year.

Well Happy Holidays everyone!!! Can't believe it is almost upon us! Jake told me today that Christmas is only 9 days away.... I said Oh My, I am not ready! Are You? and his answer was... YEAH I AM READY!!!!

Things have been good here since our scare in November. Owen had his checkup today and got a clean bill, everything looks great! He has gone back down the road of coming home from school for every little ache or for a stuffy nose, anything he is at the nurse. He did so well for a long time of going with the flow. He has missed alot of school this last marking period and he says he is just 'nervous' again. Who can blame him!!! But on the other hand he needs to be in school when he is not really sick and stop pretending to be sick. I told him (not to scare him) that he will be 'at risk' the rest of his life. He will always have check ups, but he can not go missing school, missing college, missing work for every little sniffle or ache he feels. Dr. Cherrick also told him the same today. So hopefully he will get back on track.

His absences did cause his grades to drop this marking period. He went from a 92 average to a 88. He still made Honor Roll, but we know he can do better and should be able to get them back up if he stays in school.

We have been busy with all the christmas parties! Had my Cancer Mom's with a Heart at the beginning of the month. All the husbands came too, so they got to see first hand all of us crazy mom's and why we love our night out so much! They were definately entertained by us LOL

Chris had his party for work at Lasca's and the Nucor kids christmas party were all in the same weekend! Last weekend was my Dad's friends and family party, another night of fun and laughs! This weekend we have yet another at my cousins house.

Sunday the 19th Owen will be working at Carousel Mall in front of Best Buy selling Kazoo's and other things to fund raise for Camp Good Days - the camp for kids with cancer he attends every summer. So if you are at Carousel come see us!!! We will be there from 10-2.

After that back to Dad's for christmas with Leanne's family and dinner.

Wow no wonder everyone is so exhausted by the time christmas rolls around!!! I am all ready as far as the gifts bought, now I just need to find time to sneak down to the basement and wrap them! Owen has finally realized Santa no longer exists! He is 12 so I guess that is pretty good. I think he has 'known' for at least a year if not 2, but didn't want to give in to the doubt. He told me that he 'also' knows the Easter Bunny is fake... too funny. He asked if I was sad, and I said it is kinda sad because it means he is growing up, and that is something I haven't wanted to admit, just like he didn't want to admit Santa didn't exist.

Well I still have Ty and Jake, Tyler will probably believe forever!!! I hope so anyways :-)

I hope you all have a wonderful Christmas and happy 2010!!! Wow can you believe it! Seems like yesterday that we welcomed in 2000! Give your family and friends some extra hugs and let them know how much they mean to you!!!

Merry Christmas to all and to all a good year!!!

Saturday, November 7, 2009 4:13 PM CST

Well so much for not updating till next month... we had a horrible scare and a day I never want to go through again. Owen is fine but my stomach still is in knots with thoughts...

Last update Owen had a couple days of the chills, and then was feeling better. That night he woke with fever and threw up a few times. He was still running a fever in the morning and I called the pediatrician to see if I could get him in with Tyler who was getting his H1N1 shot that morning. Off we headed for an 11:15 appt, as we were driving over, Owen was dozing in the front seat and I noticed he had petici all over his face. They are small red dots and in our world of cancer means low plateletes! My stomach flipped, I woke him up and had him take off his coat and check his arms and legs, they were no where else that we could see. The rest of the drive I was so scared, the tears were welling up in my eyes and I had to keep brushing them away....

When the pediatrician saw the peticie she said it 'could' be caused by his throwing up. But he had only thrown up a few times, she wanted to get some blood work done. The rest of his symptoms didn't really indicate flu, but could be. Since he had the flu most likely in October it generally doesn't hit twice but can. Well the blood work came back and his White Blood Count WBC, was 32.2 -TRIPLE what it should be (5-10normal) and his plateletes were 60 low (150-400 normal). She called Dr. Cherrick our onocology doctor and she wanted to see Owen. Now my stomach was really flipping and I could hear nothing but 'relapse' in the works. I drove under the speed limit to Upstate hospital - which for me as a lead foot was not normal. I didn't want to get there, I didn't want to hear the words...

When we walked into 5C, they were expecting us and we were rushed in, everyone barely looked at us, I think afraid to look me in the eyes. Bad news travels fast and this just made me more scared of what was coming. They gave Owen the option of drawing blood first and then seeing if he needed an IV or just to do the IV and draw the blood from there. He opted for just the blood, he hates the IV and wished he still had a port! Dr. Cherrick took a look at a slide and thankfully saw nothing on the slide that looked suspicious!!! Thankgod, a little sunshine. They did the rapid flu test and that came back negative, it would take a few days to get the real results back. We were sent down for an chest xray, although Owen sounded clear, he generally hids pneumonia very well and only way to know was an xray. The xray came back with an area in the lower right lung looking like it could be pneumonia. With nothing definitive Dr. Cherrick wanted us to be admitted and to be watched until a source was found or saw medication reduced the WBC meaning it was an infection of some sort. She wanted to know if that was ok with me.... oh hect yeah we will stay, I want to be close to if that is what our cancer doctor is feeling is best!!!! So Owen had to get the IV after all...

So we were moved up to the new hospital floor which is absolutely gorgeous, although not the way we wanted the tour! Blood work came back with his WBC definatley showing triple, but plateletes were normal at 200, I guess the finger poke blood tests can give inaccuracy on the platele side so the petici on his face was from throwing up! Another ray to hold on to. That night Owen continued to run high fevers and threw up a few more times. He did end up wanting ice cream so I ran over to the Tim Hortons right on the floor we are on (how nice is that - and open 24 hours) and got him a dish of ice cream. He took a few bites and was done. Later he ate some toast but immediately threw it up. It was awful seeing him throwing up, but it was also a good indication that he was sick and not a relapse since we weren't pouring any chemo into his body to make him sick.

Owen had a restless night due to sleeping on and off all day, and also with the fevers. At 5am he complained his chest was really hurting him. The resident came up and listened, but thought he sounded same as before, nothing alarming. His oxygen level was good and he wasn't struggling to breath. He did end up giving him a small dose of morphine to relax Owen and let him get some sleep since he had barely slept all night. This worked, he relaxed and slept until 9.

We had blood work done around 10, and the most wonderful news came back. His WBC had dropped to 24.1 still more than double normal but the fact it dropped with medication meant it was an infection. Leukemia would not have responded. The relief just flowed. I can't tell you the fear and sickness that I had been feeling. Owen was a trooper and as much as I tried to hide the fear in my face and the tears that would just start and fall, he told me 'Its OK mom, don't cry, I am just sick thats all' What a sweetheart he is!!!! For so long I have tried to get him to relax and not panic everytime he is sick, and I think that he has finally done that, it is me that is having a hard time relaxing now.

I don't know why, but he seems to be getting sick more often now, and that makes me nervous. He is 18 months off treatment, and last time he relapsed he was 22 months off treatment. Maybe as that time frame approaches my anxiety is increasing. As one of my caring bridge families once said "We are always waiting for the other shoe to drop" I think that explains it very well!! Maybe it is everything with our cousin Dejah. Owen and him were diagnosed months apart, relapsed months apart, and now Dejah has relapsed again. I could go on and on and justify my fears, but the fact is I have them and I don't know that I will ever lose them.

We are home now and Owen is doing well, he is having low grade fevers but feeling so much better than yesterday when he could barely function he was so sick. I went to fill his prescription for both Tamiflu to treat possible flu, and Cefdinir for pneumonia. They are going to treat both to cover all bases! Well the pharmacy informed me that my insurance would not cover the Tamiflu, because Owen had it in October and they only cover it ever 180 days!!! How can a doctor feel it is right to prescribe it twice and an insurance agency think they know more and don't think he should have it????? I did purchase it full price of course because I think he needs it too if the doctor does!!!!

So hoping Owen continues to improve and our nightmares can be put to bed, and I am going to try my best to keep my fears from creeping up....

Thursday, November 5, 2009 6:05 PM CST

Well I meant to update yesterday, but was under the weather, feeling a little better today..

HAPPY 6TH RE-BIRTHDAY OWEN!!!!

It is hard to believe our journey began 6 years ago. Some days it feels like yesterday and others so long ago. I look back at pictures of Owen in Rochester and he looks so tiny. He was younger than Jake is now! At 6 years old he had the weight of the world on his shoulders. We were so very afraid to be starting down the road of Cancer, and starting it with the big guns of chemo to knock Owen down to nothing in preparation of receiving a bone marrow transplant from Jake who was then only 15 months old! Owen's own bone marrow was totally blown away so that he could be given Jakes, then we started the waiting game to see if Jakes marrow would engraft and start to produce good bone marrow and blood and save Owen's life. We were so blessed to have Owen go through the transplant with very little side effects and very home early december.

So here we are on Owen's 6th Re-birthday and his 12th actual birthday was in May. That will never happen again - his re-birth being 1/2 his actual birthday!!!! This affected our lives forever and has forever altered our future. We have come through it pretty well, alhough I cna not help but wonder sometimes how different things would have been had cancer never knocked on our door. I don't regret how much it has made me aware of cancer - it is not something you give much thought to unless you live it, so I don't regret that it opened my eyes and sparked me to become an active person in childhood cancer. I do wish no child ever had to go through this, not just my own child but any child. It is not fair for these young innocent children to have to worry about fighting for their lives or how sick they become with the treatment. I hope one day cancer will be a memory an no longer a threat.....

We have been on the roller coaster ride of sickness here. Owen had the swine flu, jake ran high fevers for a couple days but no flu. Then we managed to all be healthy and escaped for a few days to Florida!!! We stayed at my Dad and Leanne's place in Dunedin. It was beautiful weather and we enjoyed the beach, the pool, and lots of time with my friends Dave, Lori, Natasha and Jackson. Jake and Natasha became buddies quickly and were tied at the hip for the few days we were there. It was definatley hard to leave. Don't know why I though we would be happy with just a few days of sun... LOL

Halloween was upon us when we returned. I had a Wolverine (Tyler), Skeleton (Jake) and Sweeney Todd (Owen). For those of you who do not know Sweeney Todd - he took revenge on his hometown as the barber and killed all of those who hurt him and stole his family in the past. Very gruesome movie and broadway play! Jake and Tyler went trick or treating, but Owen went to a friends Halloween party instead, guess he is growing up!!!!

The Boys all got pink eye next. I think Tyler started it with his runny nose, but they all became infected and missed a couple days of school for that. They returned and I became sick! Just a bad cold, but wow it knocked me for a loop. One day of home and sleeping most of the day helped alot and I was back on my feet again today mobile, but still ready for an early night. Owen came home yesterday from school with the chills. He stayed home again today and by this afternoon was feelling better. This has been a bad year already for everyone and the schools are just going through so much, not looking forward to winter!! Or maybe that is what we need, the cold to get here and kill all these germs!!!

We hope we are all on the mend at least for a while!!! Owen doesn't go back to the doctors until December 15th. No more trips for the family scheduled until next year so should be a quiet end of the year.

If anyone is on facebook, request me as a friend! I am on there more than hear because it is mostly little blogs I write because things are good, as I said 6 years ago can seem so long ago, back when I needed this daily to get me through the day. Thankyou for continuing to check in on us!!!!! Without all of you I would never have made it through the day... your words/ actions/ support were incredible.

Talk to you next month!!!! (or remember facebook me )

Tuesday, October 20, 2009 6:12 PM CDT

Well hello everyone! It has been awhile, but all is well. Had a bit of a scare last week. Owen had 3 bloody noses in one day - I soooooo hate bloody noses, always make me so nervous. Tuesday he did not go to school because he was up alot in the night with his bloody noses and was just exhausted. Thursday he came home from school with a low grade fever 100.2 late that night he spiked 104!!! So Friday he was off to the doctor and he was diagnosed with the H1N1 flu!!! the doctor wasn't 100ure but said it most likely was from his symptoms and the flu wash is not fun (Owen remembers how horrible it was) and it is only 50ccurate with a negative result. He was put on the Tamiflu because it was caught within 48 hours. Owen was down and out and never left bed until Sunday. He was feeling better and by Sunday night seemed to be on the mend! I kept him home on monday, but he went back today. Tyler was also put on Tamiflu because he came home sick from school on Friday, but he has not had any fevers and has been fine, just a bad runny nose. He also went back to school today.

He has his checkup with Dr. Cherrick today and she confirmed that it was the H1N1 with his symptoms and the fact he turned around after about 24 hours once on the tamiflu. His counts look great so we are so very excited. He is 18 months off treatment!!! Wow it seems like just yesterday that he finished.

Jake started with fevers this morning, but I don't think he is the flu. Once he gets motrin in he is playing and happy. He took quite a few naps today but otherwise has not missed a beat in driving Owen crazy!!! LOL

Thursday we are headed to florida for the weekend. Dad and Leanne have a condo down there and we had a credit on the airlines so thought it was a good quick little break before winter hits here. Nothing much planned but relaxing at the pool or on the beach. We will get to see Lori, Dave, Natasha and Jackson while we are there so we are very happy to have some time with them!

So other than that we are just moving along. Boys are already for Halloween, and of course the christmas lists are starting already!

I will post picks after we return from Florida!!! Daddy is already there with my Dad. They went down today to get the place ready and have some 'alone' time before the kids descend. They are also staying 2 days after us, so they get the clean up task too! Sounds good to me!

Sunday, September 27, 2009 3:42 PM CDT

all is going well!

Today we went to the 11th annual Buddy Walk - Down Syndrome awareness walk. WE have been there since the start 11 year ago, Tyler was only 3 months old at the very first walk. He knows it is all about him there! He gets so excited as soon as we pull in and he sees the balloons and all the people. Unfortunately the weather did not co-operate this year! We walked in the on/off rain and then it just wasn't going to let up. We usually make a full day of it with games, raffles, eating and the band. However today we played a few games and then headed to dryer land at Friendly's to eat....

Kids are all settled into school and doing well. Owen has gotten into the swing of changing classes and getting around the school. He has only been to the nurse once!!! Now that is an accomplishment! He continues to feel well and settling into growing up, we are starting to see the teenage attitude coming out! Yikes not ready for that. He has only had one bloody nose since his last check up in August, but I still hate to see them!!! Summer I understand them more as it is dry, but this time of year I HATE to see any!

Tyler has only had one bad day at school where he just wouldn't listen and acted out on everything. He was stripped of his priveleges at home and this seemed to turn him around and he is back on the good streak!

Jake is settling in. He does have to be constantly reminded to stay on task but he seems to be wanting to learn more this year and is getting less frustrated with doing it.

I am off to SC tomorrow for work for 3 days. Can't wait to see the sunshine and temps in the 80's!!!

Owens next appointment is October 20th. We then leave for Floriday for a long weekend on the 22nd. My Dad and Chris will be going as well. We will be staying at my Dad and Leannes place outside of clearwater. We are planning on just enjoying the weather, the beach and my friend Lori and her family!

Please keep the prayers going for our cousing Dejah. He is going through treatment and the world of Cancer is just taking its toll on all of them this 3rd time around. Dejah needs all of our prayers and a miracle to stop the beast....

Happy Fall everyone... snow will be here soon... ugh!

Wednesday, September 9, 2009 5:59 PM CDT

ahhhh school starts again..

It was a little emotional watching Owen board the early bus for the first time as he embarks on the road to jr. high, yes 7th grade!!! Of course I had to watch from the window, as I was not allowed outside LOL!! 6 years ago Owen did not start 1st grade as he was in the hospital starting his fight against cancer. So to see him now walking down the driveway and feeling good and in remission is incredible. Will the fear every go away? No, it is with us forever, but we appreciate every milestone and will cherish every moment forever!

Tyler has had 2 great days at school so we hope he keeps up this trend this year! He was very excited to return!

Jake is loving being back with his buddies, and although we know he will have to work hard, he is excited about what he has learned and wants to learn now.

Our cousin Dejah is back in treatment (see link below), but surgery for the tumor is not an option. They will continue to explore chemo treatments or radiation as alternative options. Dejah is a trooper and dealing so well with all of this. While he could not start school this year he will get there!!! I know he will !!

Andrew, the son of one of my Mom's group is fighting hard as well. He is in need of a bone marrow transplant. They held a drive for him a few weeks ago and while I was not a match (but hopefully will be for someone if they need me one day) they do not have a donor!!! Andrew is too weak with pnuemonia right now and needs to get stronger before they can proceed.

So please keep these families in your prayers. They have a rough road ahead and every thought counts!

Owen doesn't return to Dr Cherrick until October. Hopefully I will update before then, but no promises, I am liking not having to rely on caringbridge to get me through the day, it use to be my sanity page to get my thoughts down. I always want to keep you in the loop so I will keep updating!!!

Thanks for following us!!

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Thursday, August 27, 2009 5:37 AM CDT

Yesterday was Owen's 6 year anniversary from when he was diagnosed. Hard to believe we have been in this Cancer War for 6 years!!! We are very blessed to be where we are after such a long hard road. Owen is feeling good, looking good and finally relaxing and wanting to be that normal 'pre-teen' that he is. He is so mature in some ways, yet in others there is still that little boy that missed so much and still enjoys being a kid.

He has decided it is time to re-do his room and get rid of his batman bedding! So sad.... but then in the next breath he is dressed in his spiderman costume and acting out the movie with his brothers! He does want to go with black/gray colors and bedding so it is still the colors of batman but just not so 'kiddie' in his room.

We got news back from Dr. Stred (endocrinologist) for his blood work. He does not need testosterone at this point. He will have blood work done again in December to check, then again in April with another bone scan to check his bone growth again. From the initial tests he appears to be 10 1/2 in bone age so his growth and puberty level is behind schedule. Need to keep watching though because want to make sure don't miss the window of opportunity to help him mature and grow when his bone age hits closer to 12 if he has not sprouted on his own.

Next appointment for 5C is in October and next with Dr. Stred will be in April unless blood tests results warrant and earlier appointment.

We got GREAT news on Dejah. The lymph node biopsy showed that cancer is NOT in his lymph nodes! That is HUGE. He has a long road still and decisions to be made... surgery to remove the tumor on his spine or a new chemotherapy treatment. They will be discussing the pros/cons of each of the next several days and making that decision. Dejah is a trooper and beign the 'rock' for his parents. These kids are just amazing and we can learn so much from them on hwo they handle everything!!! Dejah's link is at the bottom of Owen's page. Please keep his family in your prayers and help get them through this war once again....

Summer is coming to an end, bummer! Seems like it just started to get hot out, it was a very rainy summer. This morning I had to wear a jacket when walking Nikki our dog. Yikes its still August and I need a jacket in the morning!!?? Kids will be going back to school on September 8th. Owen is very excited to be going to the Middle School. They get choices for lunch, soda/water machines and just so much more freedome! We go for orientation next Tuesday to see the school, get a feel for where his classes are and even stock his locker. Good thing on that! He had so many supplies to get for each class there is no way he could have brought that all to school on day 1. We are nervous for Tyler, he will be 'along' at AJ this year, no more Owen in the school. He will still be on the bus with Jake but it was Owen he connected with and stayed with last year. I keep telling him no more Owen, and that he is on the bus everyday (last year he rode home with Owen and Samantha just about every day as Sam's parents picked them up), so that will be a big adjustment. The ride home is over an hour and that is when we saw alot of behavior problems, when he had to ride without Owen. So fingers crossed he does ok! My baby Jake is entering 2nd grade! He has been reading alot this summer so hoping he doesn't struggle as hard this year. We have been practicing addition as well over the summer, he still uses his fingers alot but hopefully repitition will start to make this more better.

We want to go to NYC for a weekend in September and then to Florida for a weekend in October. Dad and Leanne have a place in Florida now so it is just our flights down, and I have a credit from our flights to BC since they went down in price after booking them. I got to get busy and start booking - september is almost here! We want Jake to get to the Natural Museum of History for the dinosaurs before he out grows this - although he may never!!! LOL Owen loves NYC and has been wanting to go back. Not sure how Tyler will do there, he can be quite overwhelmed with busy situations so could be interesting!

Thankyou for checking on us!!!

Wednesday, August 12, 2009 5:31 AM CDT

Owen had a marathon of doctor appointments yesterday. First up was Dr. Shred to check his growth rate and also if he may need help reaching puberty. From his bone scans done back in May in preparation for this visit, he 'bone age' shows he is at 10 1/2 - 11. Which is good news, means he is still growing and has time to catch up from the delay the chemo and radiation caused. He will reach his time to 'sprout' later than most kids and will not have this until he is around 15. He does not need to go on growth hormones though so that is great! For puberty there is 2 parts. The first - increased appetite, hair growth, body smells (needing deodorant), and of course attitude, he is doing quite well at :-) Part 2 is male growth and producing testosterone, he may. We were to have detailed blood work later to help determine if he needs this. We found out that his 'balls won't drop' as Owen put it! (She was quite impressed with Owens medical knowledge and use of many medical terms the whole time and got quite a kick out of his honesty and openness) The level of testosterone he is producing will determine if he should have prosthesis implants to help him look normal. He could have these done around the age of 14, and then again later to be more realistic with his growth in his 20's. Owen and I talked about that on the way to his next appt. and as much as he cringed at the idea of them cutting him open and inserting them, he liked the idea of looking normal and night like a little boy. So we will think about this depending on how much testosterone he is producing. She did not recommend this if he is able to produce on his own. So all in all it was a good visit. Owen really liked her, she had a way to relax him and bring him out to talk. We go back in December, to review again, unless his blood work comes back that he needs testostrone immediately, then we would start monthly shots now. I did tell her steroids were cut from his protocal due to the AVN issues that started. She said this was a very low dose of steroids, not the high dosage of treatment but would check into this. She does want him to start a daily vitamin, and to cut down on salt! He loves his salt and she could tell by his hands that he does! He also needs to eat healthier. He eats well, but snacks on some very crappy junk which is as much my fault for having it in the house! With his appetite increasing and his growth back at the 11 year old level he is putting weight on faster than he is growing up so need to balance this.

Next off to Dr. Cherrick for onocology checkup. It was a quick in and out as he is having no issues, and blood work looks great!!!! Owen rushed up to 7H to visit while I got us checked out and set up for our next visit in October. We needed to be at appointment #3 in 20 minutes and it was 15 minutes away... I went down and got the car and pulled up front and waited and waited and waited... I finally called 7H nurses station and he had just left.. He came out smiling, he got to see a few of his favorite nurses Jen and Brian and just got talking. Plus I think he was delaying...

Next appointment was at pediatrician for his part 2 of the chicken pox shot. He needed to be re-vaccinated after all of the chemo treatments he received. So he has now been vacinated for this 3 times! His normal 1 year appt, after the Bone Marrow Transplant and now again after this treatment - I sure hope he can't get it after all this protection!!

So that is it on the medical front... now on to the world of Cancer and how much it really sucks. Our cousin Dejah in vancouver has been going through Cancer with Owen since 2003. He has Wilm's Tumor and was diagnosed shortly after Owen, He relapsed in 2007, and we have just found out he has relapsed again. They found a spot with a MRI on his spine. We just spend an amazing 2 weeks in Canada with Dejah and our hearts are breaking. I don't know alot about what the plan is yet as this is still very new for his family as well, the doctors and them will be discussing everything this week. I was very open with Owen (as I promised I would be) and told him when he saw me crying while talking on the phone to Grandma and my cousin Connie. Owen is taking this very hard. He is concerned very much for Dejah but is also nervouse for him. He says him and Dejah are 'connected' they have gone through this whole journey together and does this mean he will relapse too? I couldn't answer that... I don't know... yes those thoughts crossed my mind too... but all we can do is keep moving forward. Good blood work at the doc is good. Now we need to focus on Dejah and getting him through this again and not think about 'What Ifs'

So please everyone keep my family in your thoughts and prayers and help Dejah rally and beat this horrible disease AGAIN!!!!!

Thursday, July 23, 2009 6:57 PM CDT

We have returned safe and sound from our BC vacation and what an awesome time. It was lots of fun and adventure and great to see everyone again.

We started July 8th heading out to Couer D'alene Idaho where Auntie Kay lives. Cousins Bill and Jan were there and we celebrated his 60th birthday. In the morning we went for a ride on his spectacular boat and drooled over the places on the lake. Stopped by to feed the local duck Quack Quack before heading Off to Sandpoint, Idaho to stop for a quick visit with Mom's friend Ester. The Boys were having so much fun playing in the lake we lingered a little longer before heading off to Creston to visit Aunt Ann and Cousin Nancy. The boys hit golf balls off the mountain she lives on and thought that was quite cool.

Next morning we headed to New Denver, BC to stay with another friend of Mom's Lynn and Lucsius. The boys enjoyed kayaking and tubing. Then we went for a ride on the boat to stare at the beauty of this lake set between some huge glacier topped mountains and several glacier waterfalls. I wish my camera could do the justice for how beautiful it was!! We enjoyed some s'mores around the campfire that night.

Next day we were headed to Kelowna to see Grandma. We saw a few deer, a Turker and its babies and even a Black bear along the way!!! We rode the huge ferry over the Kooteney lake and then a smaller one to get over yet another lake. They caution you to slow down on the road down the mountain... if you don't the road ends and you are in the lake! Finally arrived in Kelowna and went to Uncle John and Aunt Claudia's to see the crew there. Cousins Glo, Dejah, Rayne, Connie, Ren, Vicki, Cressy, Mira and of course Grandma!!!! After Dinner Glo, Cressie, Connie, me and Tyler headed to Cousin Dwayne's 40th birthday party celebration. Tyler had a blast hanging late and jumping on the trampoline with the other kids there.

Went to the City beach the next day with all the kids and my Cousins to enjoy some relaxation. The kids built sand castles, jumped on the trampoline, rode the water bikes and just wore themselves out in fun. Back to Uncle John's for dinner again and an early night.

Next Day we went to Croc Talk www.croctalk.com A reptile rescue place. They will be featured on animal planet this fall. The boys enjoyed learning about the alligators and other wild life there. He even had an alligator that obeyed commands! Went back to Dwayne and Vickis that night for dinner and celebrated Uncle John's 65th birthday. The boys all took off up the mountain and after not returning for some time Dwayne went off to 'rescue' them. One by one he brought back the Wawrzaszek boys on the dirt bike as the rest ran behind. Poor Dejah stepped on the nasty cactus growing on the fields so we had to do some damage control but all was well.

Next day was another day at the beach and tubing on Cousin Dwayne and Vickis boat. Tyler loved it and constantly asked for more. I was safe as I mostly rode with Tyler, until Owen and I went and Dwayne made sure he finally dumped me!!! Although I kept my swim suit on most lost theirs when they dumped! Went back to grandma's backed a to-go bag and me and the boys headed back to Dwaynes to spend the night. All the kids slept upstairs and us adults got some fun around the camp fire. Steve flew in that night, and him and connie arrived around 11:30 to join the fun. Poor Steve was on his last legs having been up since 6am EST, and we went to bed at 3:30 (so 6:30 EST)!!!

Next day Dwayne, Steve, me my boys and Dwaynes (Chance and Ren) and Glo's son Dejah headed to ride the go-carts. We had the track to ourselves so it was alot of fun and competition to be had!!! A lttle bumping on the corners as we tried our best to pretend we could be nascar! We headed down to the Kelowna board walk around the lake for a walk, took a break to let the boys play in the water and cool down before heading back.

We grabbed Grandma and Owen, Mom, Steve and me headed to the cemetary to visit Grandpa Faynor. It has been 10 years since Grandpa passed away and it just doesn't seem possible. Steve left his NY yankee hat at the grave site which brought us all to tears. We love you Grandpa!!!!

Next day everyone packed up and headed to Connie and Bruce's place in Osoyoos for the family reunion. They are right up near the top of the mountain, what a great place! The rest of the crew started rolling in (everyone we had already seen in kelowna others) Sean, Andrea and Alykrea, Bob (glo's husband), Bruce (connies husband) and Jia, Angela and Ella. Auntie Kay came Saturday. I had not see Jia in 10 years and Sean in more than that! It was awesome to see them all again. Jia is the resident mountain climber and photographer. Check out his website at www.jiaproductions.com (click on portfolio and check out his various albums it is breathtaking)

We had several days of fun and playing games, memories and just being together. We were the campers who stuck out like a sore thumb, as we needed a full camper everyone else knows how to tent it!!! We took the kids across the street to see the ranch of goats, Llama's and horses. It was nothing but fun and relaxation.

Sunday arrived and it was time to say goodbye, hopefully we will be back in 2011 and we see everyone again. We headed back to Couer D'alene to Auntie Kays house. We ran into a little snag on the way... as we crossed the border in Washington and then headed up the hill to the highway we got a little carried away. Steve was leading in his car, and next thing I knew there was a cop in the road motioning us both over. I figured it was a routine inspection... well the hill up to the highway is still considered town and has a 25mph speed limit and we were going ummmm 51!! Thankfully they let us go with warnings and to be more careful of speed limits when traveling on our route!

We headed to Kellogg the next day to ride the longest Gondola up the mountain only to arrive and find it only ran on the weekend and it was monday! So we headed further down the road and went into an old silver mine. The boys thought this really cool! We took Auntie Kay out to dinner, fed Quack Quack again and headed back for an early night to travel the next day.

Tuesday was a long day. We had a 3 hour layover in las vegas.. sounds good but with 3 kids I couldn't gamble they weren't allowed anywhere near the machines so it was just a tease! We arrived back in Buffalo at 11pm, back to rain and cold after enjoying nothing but sunshine and temps in the 90's!!! Even in the 100's somedays (but no humidity). It was a long ride home, but we made it and settled in to bed.

It feels great to be home, but this was turly a great trip. We had a lot of fun and it was great to re-connect with everyone. I told them next reunion was in NY LOL!!

On the medical front all is well. Owen goes for his next check up August 11th and also will go see the growth specialist to see about starting on something to help him grow and reach puberty. I will let you know how we make out with that!

Next week Owen goes to Camp Good Days, the camp for kids with Cancer. This will be his 3rd year at this and he absolutely loves it and wishes it was longer than 1 week! Tyler and Jake go to day camp at Casey Park for Freedom Camp.

Hope NY gets summer soon!!!!!
Thanks for checking in on us!

Monday, July 6, 2009 5:35 AM CDT

Been a while so I thought I would touch base with you all!!! Remember you can get notified when I update by clicking on link above the slide show - it will send you an email when I update.

Things are going well. Summer is in full swing... well at least as far as the boys not being in school and busy schedules.. but certainly not the weather!!!

Owen has gotten out a few times golfing with papa Fred and is enjoying that! He has gone to the movies a couple of times with 'just' his friends. Yes I am dropping him off and picking him up later, how scary my Owen is growing up!

We really enjoyed this last long weekend. I took the boys to Chuck E Cheese on Friday. I had hoped to have a day at home by the pool and have some of their freinds over but alas the weather really is not co-operating for this! We went to Uncle Billy's to watch the fireworks Friday night from the lake side. I ran back home to get S'more stuff and amazingly there was the new bag of marshmellow, gram crackers but no chocolate?? So off to the convenience store to grab some candy bars. I got back to Billy's and said "Jake, I couldn't find the chocolate bars in the fridge??" And quick 'innocently' he replied " I know, I ate them" LOL

Saturday was the parade at Aunt Anna's. This parade is soooo much nicer than the memorial day parade. People stay out of the road and you can actually see the parade. Memorial day they all move right in front of you and pretty soon their is barely room on the road for the parade to come through!!! The boys loved it.

After we headed to Grad party for the family. 3 parties in one. Congratulations Garrett, Sammy and Chris!!! We headed home to change into jeans and sweatshirts to come back for the HUGE bonfire and fireworks. I think they had more fireworks than the Auburn show! Owen took over the DJ stand and had a blast picking the songs and gave us a Karoke of many - no words he just knew the whole songs and sang his little heart out!

Our vacation is coming up and we are so excited! We leave tuesday night for Buffalo, then fly out in the morning to Spokane WA. We will spend the night with Auntie Kay in coeur d'alene Idaho. Then from there not sure. We will either head to Creston British Columbia to visit Aunt Ann, and then Castlegar BC to visit mom's ol friend from school, or head right to Kelowna BC to see Grandma and the rest of the clan. The weekend of the 18th we will be in Osoyoo's BC for a big Faynor reunion, lots and lots of cousins and should be alot of fun. Steve is even coming out for it! He arrives on the 14th.

On the medical front things are good! Owen has his next check up 8/11/09. Still have not heard from the endocrinologist to take a look at getting Owen on hormones and growth meds to help him start growing and reach puberty! Hoping to co-ordinate with his 8/11 appointment. Speaking of puberty, my little Tyler just turned 10 and he IS reaching puberty! Oh my!!! Although we have noticed that he has noticed he is a boy.... yeah you know what I mean!

I will update when we get home from BC, can't wait to hit the heat and sunshine for 2 weeks!!! Weather is in the 90's and nothing but sun!

Thanks for checking up on us!

Wednesday, June 24, 2009 5:39 AM CDT

Owen had his graduation ceremony last night for 6th grade. he is 'moving up' to the middle/high school. Union Springs has a different layout, K-3, 4-6, 7-12. So this was a big deal, next ceremony is high school graduation!!!!!

I sit here thinking back to almost 6 years ago (8/26/03) when we heard those devastating words 'Your son has Leukemia', then within days 'Your son has a very rare mixed form of leukemia with a poor prognosis'..... how our world spiraled and we couldn't even think about tomorrow. Last night I watched with so much happiness running through me as he crossed that stage 6 years later and received his diploma! Owen also received awards for Honor Roll, Never being in enforced Study Hall (which means he is very organized??? not sure how he got that one LOL!!), and also for maintaining a 90 average for the last 3 years!!!! WOW!! For somone who missed most of 4th and 5th, this is amazing!! He already says he will be on High Honor next year now that he is in school all the time!

What an amazing son I have. He makes me so proud. He has really come through this and gotten his life back. You can see how happy he is to be one of the group again!

So now I will have a child in each school! Jake - elementary, Tyler at AJ and Owen at the High school!!!

Tyler earned the 'Most Flexible Award' in gym this year!!! He was very proud, and he is definately flexible, I think he never lost that 'baby' bending ability! Tyler is now 'suppose' to wear glasses! He was very proud to get them and shows everyone his new glasses, then they come off and go in their case... not sure they are helping much there! I can see this will be a battle to get him to keep them on! Tyler is excited for summer and swimming!!! We can not keep him out of the pool - he loves it!

Jake is doing well, we are watching him for ADD. He has a very hard time focussing in school. He has been put on Adderall, a six hour dose of medication that just gets him through the school day. It has made a difference at school so we will continue to use it there. I do not have to use it at home, it can be given as needed. Jake was close to being held back this year, but we buckled down and really began reading alot at home and working on math skills, this seemed to help and while he is still behind he is catching up. Summer will be a time to keep re-enfocing and making sure he does not regress.

We leave in 2 weeks for British Columbia to vist Grandma and the rest of the Faynor bunch for 2 weeks!!! We are very excited! I have not been since the summer of 2005! Even my brother Steve is going out for a week. We are going to have a Faynor family reunion the second weekend we are there so this should be alot of fun!

Hope everyone is enjoying the weather that has FINALLY arrived!!! I hope it is here to stay!

Sunday, June 7, 2009 8:36 AM CDT

50/50 Winner - Lydia Husak $452 total - $226 to Lydia - who donated it back to the team!!!

Wii Sports System Winner - Mary Starr

Congratulations

Relay for Life was a success!!! Team Nucor Raised 8,024!!!! Owen leading the pack with $3,327 - thankyou again for your awesome support! Owen received the All Star Award for raising more than $2,500.

We had a great time filled with all sorts of events. The event started with a balloon release for those who have been survivors starting with 25 years down to 1 year or less. What a beautiful thing to see so many ballons in the sky. Owen lead the survivor lap with Daniel Biljanowski. The Luminaria ceremony was very touching as always. Owen did a speech on survivors as the large Candles of hope were lit. Then each of the team captains read off their list of Luminaria bags In Honor and In memory of loved ones! It was very emotional and Owen came back to me crying and feeling sad for Andrew, John and Mira. I reminded him that it was very sad, but that we needed to be happy our lives had been touched by these wonderful kids! But the tears were coming down my face as well, the fact that we hae to read way to many 'In Memory Of' names means we have along way to go in beating Cancer.

At 11 the Whip Cream throw started up. It started out pretty good, most were missing and Owen was just getting a little bit on him, but then as the whip cream throwers wanted 'more' they snuck up closed and Owen was covered!!! He looked like a big sundae when he was done! I ran him home to shower as no amount of papertowels or whips were going to work! He decided that next year we needed a NEW game! LOL

We made it back in time for the Diva lap (Miss Relay - guys dressing up as women) Owen did not chicken out this year. There was about 10 guys and each had to go on stage and give their Diva Name - Owen was 'Olivia' and give a little dance! It was so funny! Owen did quite well walking in heels!!! Not sure if that is a good thing!!!

Owen and Mackenzie did the Newspaper dress. Missy and I had to make newspaper pants/ shirts as quick as we could on them and then they had to race to the finish line without it falling off. I think it was a tie! Mackenzie took off running with Missy running behind her as the tape was still coming out of the reel!

Around 3:00 they were starting to get tired... so by 3:30 we laid down to take a breather and slept till 5:30, then it was time to get up and start tearing down. At 6:15 was the closing ceremony. We were home by 7!

Owen slept another hour and then headed out the door with Uncle Steve to a hunting event. Ty, Jake and I headed to Jakes baseball game at 9am, they were very tired too as they had stayed till midnight at RFL.

In the afternoon we headed to Kelly Green Lipiska's memorial scholarship fundraiser. Kelly lost her battle with cancer 3 years ago. It is a great event and a chance to catch up with lots of people from Port Byron I don't get to see. Tyler was in a mode... I think tired and while he was distracted for a bit with botchie ball with the Espisito boys this wasn't his type of party, mostly adults. So we left after a couple hours to head home.

Owen was crashed on the couch after his busy day with Uncle Steve, and Tyler was ready to stay home, so Kim came over and Jake and I headed to our neighbors 30th surprise birthday party. We managed a couple hours before I knew I was on my last legs! We were home by 8 and I was in bed by 9! Slept till 8 this morning and feelign so much better after some much needed rest!

Today will be a quiet day I hope!!!!!

Thankyou again everyone for making Relay For Life a success. I will update with the total earnings for all teams for the event when they are released but it was a record for participants this year (450) so hopefully a record for fundraising too!!!!

Monday, June 1, 2009 5:20 AM CDT

Had a great weekend. It was Owen's birthday celebration weekend. Started on Friday with 4 of his friends spending the night. I questioned my sanity on having 4 twelve year old boys here for the night but they were great! They played outside most of the time, and it was after 10 when I finally made them come inside! We made s'mores late at night, always love making them!

I couldn't believe when they were all laid out in the livingroom with a movie in a little after 11. Should have known better! I told them they could stay up until 1. At 1:30 I told them it was time to settle down and go to sleep. At 2:30 the laughter woke me again and I came out to tell them it was time to sleep. The whispers started and I saw a couple had fallen asleep so was a good sign... at 3 the burst of laughter woke me again. Tyler was back awake. He LOVES when Owen has sleep overs and the boys are great with him and include him, he gets to sleep down with all the big guys too! So that was not good to have him awake after sleeping he was ready to play. So I had to bring him up to his room and then it finally stayed quiet..... till 7am they were all back up!!!

They played some video games first thing in the morning till after breakfast then were back outside. At 11 we headed out to the Combat zone for the 'real' party. Owen was having a paintball party with 14 kids. They had a blast. Everyone was very nervous as they went through the rules and how to use the equipment. There was only 4 of them who had done it before. They headed to the woods divided into their teams. About an hour later a few returned to 'camp' for drinks and full of stories just beaming on how much fun it was. They went back out for another hour and then they all returned thirsty, hungry and talking a mile a minute! Looks like it was a hit. Their excitement has me and my cousin Crissy thinking we need to organize a family paintball tournament!! Course then I look at the bruises and welts from some of the paintballs and I get a little nervous!! But hey they looked in one piece for the most part!

Owen and I are enbarking on a Wii Fitness Program! He has become very conscious of his weight. He keeps gaining weight but is not growing up. Hopefully he will get some help grwoing here soon from the docs. But his stats on the Wii says he is overweight. At the soap box derby he went into the bathroom to change his shirt as he couldn't do it in public, I am sure due to his rolls. Everytime we are joking around he is sure no matter what we say it is towards his weight, so definately on his mind! So we got it up and running last night and did some jogging and yoga exercises. Plan is to work out everyday a little at at time. I am sure if he starts growing his weight would not be an issue, just need him to sprout!

Big week coming up.... Relay for Life is Friday night to Saturday morning. Today is the last day for matching funds from Nucor. Saturday morning Jake has a 9am game, ughh that will be brutal after being awake all night! Then from 1-6 is the Kelly (Green) Lipiska memorial party at Yawger Brooks. Kelly lost her battle with leukemia in 2006 and established a scholarship fund at PB school in her memory. Sunday will be a day of REST!

Have a great week and pictures of our great night at RFL coming next week!

Sunday, May 24, 2009 8:35 PM CDT

Owen had a blast at the Soap Box Derby. On his first practice run, his brake cable pulled out and he hit another car, luckily no one was hurt!!! So Chris and another parent had to quickly get it fixed up and ready to roll by race start. It was double elimination, and each race was 2 heats. This was so they raced against each other on both sides of the course and their wheels were swapped on the cars as well. They try to make it as fair and even as possible. Owen lost both of the first heat but they were very close! The second heat he won the first by .07 seconds, but lost the second by .3 seconds so that made his lose the second heat as well. He took it really well, and said he learned a lot from the other kids and he is already talking about next year!! Daniel, who is the other child who is co-chairing the Relay For Life and is fighting a brain tumor, was also in the soap box derby. The picture above is of Daniel and Owen. Daniel went on to win the Super Stock race and will be headed to Ohio for the finals!!! Great Job Daniel!!!

I have added some other pictures from the soap box derby as well.

Jake, Tyler, and the neighbor Caleb went to Majorpalooza today which is a fundraiser for the Relay for Life. They had lots of bands, blow up slide, bouncy house, face painting and lots of other things. It was a great event and we will need to keep this on the list of things to do every year!!!!

Jake and I made our Relay for Life Cardboard cut out today. We painted the Orange Leukemia ribbon on a large piece of cardboard, and wrote "Cancer Sucks... Come Take it out on Me!" We will use this at the Relay for Life for people to throw whip cream pies at Owen. This is our middle of the night event to keep everyone going and awake!!! I can't believe it is almost here. A little over a week to go!!!

Next week is Owen's birthday party. He is going to have 4 of his friends spend the night saturday and then 14 of them will be heading to the Combat Zone for a paint ball party!

Tomorrow Jake and Owen are going hunting with Uncle Steve and Tyler and I will go see the parade. It will be nice to have a day with Tyler alone. Then the rest of the day we have no plans, sounds like it is going to be beautiful out again though!!

Wednesday, May 20, 2009 5:47 AM CDT

Owen had his monthly onocology checkup yesterday and he is looking good! He will now only need a checkup every 2 months!!!! It was a day of discovery and sadness though for Owen. We have been monitoring his growth due to having Total Body Radiation prior to his Bone Marrow transplant. He has seemed to plateau. So his weight is shooting up but his height is not keeping up. He is showing very little growth in that manner. He will need to have some help in this area. He had an xray of his growth plate in his hand to see what is going on. Need to strike at the right moment before his bones fuse and stop growing. We will be seeing a specialist on this in the next couple of months. The other area - testosterone is also an area he will need help in. Dr. Cherrick reminded me that he will not 'produce' anything and will need help to reach the changes in life.

She left the room to get something and Owen looked at me - "Mom? Does that mean I won't have any babies?" My heart broke, we have not had that discussion with Owen yet. I know I hold so much back because he IS still a kid and how much should he know about the affects this horrible disease will have on him for years to come in side effects? He was crying and very upset. I explained that he could adopt, sperm donors etc, and who knows with advances in medicine what changes will occur and 'maybe' there is something in side him and he could. He asked me if it is 100 percent for no kids, I said no, but very high, and especially since he had radiation directly to his testicles on his relapse that it is probably a very low possibility. Dr. Cherrick came back in then and realized he was crying.... I explained that he did not know about not being able to have children. She told Owen same things I did, that they may not be biological children but he could have them, there were many ways now.

Owen was quite quiet after this and very sad on the way home. He asked me 'why' we would put him through something that would take away being able to have babies. I told him we didn't have a choice, we needed to do the radiation in order for him to Live! He again caught me on how I need to be more honest with him and tell him everything!

I know I shelter him, but he is my 'baby' and sometimes I think there is just TMI (too much info) for him to handle. I hid when Andrew Sleeth passed away, only for Owen to discover on his own. I hid when Mira earned her angel wings, I did finally tell him when I thought we were going to the Ithaca St. Baldricks and knew he would find out. I was honest with him about John Walls who just recently lost his battle. Only because Owen found me crying at the computer and asked what was wrong. When I shook my head, he said 'Mom - you promised to be honest with me!!' So I told him. I guess I need to realize he is growing up and can handle more. But I will always try to shelter him, I don't want to think about all the 'possible' side effects of treatment, so why do I want this on his shoulders??? I need to find the happy medium so he doesn't continue to stumble onto these things.

We headed to school last night for Curriculum Fair and the art show, he was back to running and laughing with his friends. It was great to see him rebound and having fun again, but I know a piece of that innocence has once again been chipped away.....

Last reminder :-)

Relay for Life is June 5th. All donations need to be in by June 2nd to qualify for the Matching Funds of Nucor. Donations can be accepted through the end of the even (7am June 6th), but lets take advantage of Nucors offer to match all donations!!!

We are getting excited and making lists of things to bring. We are doing a 'fun' event. Throwing whip cream pies at Owen! He will have his face in a cut out featuring the Cancer ribbon, the slogan.... 'Cancer Sucks! Take it out on me!' Owen came up with that one! This will happen in the early morning hours to help keep teams going and awake! We havent' been given the time slot yet, but should be around 1:30am or so. So stop down and give Owen a whip cream face!!!

Monday, May 11, 2009 5:27 AM CDT

HAPPY 1ST OFF TREATEMENT ANNINVERSARY OWEN!!!!!!

Can't believe it has been 1 year of being off treatment! We feel so blessed and happy to make it to this big milestone. His doctor appointments after this month will now drop to every 2 months vs. every month. Again it comes with anxiety as we move farther between appointments, but I know it is a good thing! It is also Chris and my 13th Anniversary! What better present than that!

Owen and Jake went hunting again with Uncle Steve yesterday and while they did not get any Turkeys.... Owen shot a squirrel and a rabbit.. 2 for 2 he says! So we got to get the lovely tail from the squirrel to keep as a souvenior.. 'great'.

Only 25 days left to relay!!! It is so important to find a cure, I know they have made a lot of progress but as long as we are losing any child (or anyone) to cancer the battle has not been won! I will keep you posted but I am waiting to get the ok to set up a raffle booth at Walmart to sell the WII and 50/50 tickets, since it is a form of gambling, I have to get approval from the Police Chief and am waiting to hear back.

I posted this on facebook and wanted to share here as well, it is mind blowing:

Swine Flu 2009 = 1 confirmed U.S. death

Childhood Cancer 2008 = over 3,000 children dead in U.S.

Swine Flu Government Funding = $1.5 BILLION

Childhood Cancer Act Government Funding = $150 MILLION in funding spread over 5 years

Friday John Walls earned his angel wings after a 5 year battle with leukemia. I first came in contact with the Walls family (out in oregon) thru a friend of theirs who found Owen with the same mixed leukemia of AML and ALL, he had just relapsed and was completing a bone marrow transplant. John was amazing and had a zest for life, football and his friends and family. His town seems like a wonderful place and a real support for the family similar to the awesome people who live here! Please say a prayer for the Walls' family (link below) as they go through the many difficult days ahead and the emptiness of losing a very special son that will never go away.

Sunday, May 3, 2009 7:33 PM CDT

Today was Jakes first big hunting trip! I got Owen and Jake up at 4AM, and Uncle Steve was here to pick them up at 4:30 OMG!!! But unlike getting up for school, they got up very easily today! They saw lots of hens, they came within a few feet of them, but can't shoot them during spring Turkey season. They saw 2 Tom's but they were too far away to shoot. Jake loved it and can't wait until next weekend!!

When they arrived home, we were off to practice for the soap box derby. Owen got several runs in and is loving this. Next practice we get a weigh in and can add weights to the car, so all racers weigh the same.

Home again, Owen took a quick shower and we were off to St. Baldricks in Rochester. Grandma Bonnie and Aunt Susie met us there. Owen was a special guest and got to be on stage with Lynne during the opening ceremonies, and then did his own speech to talk about how important St. Baldricks is and why it is so important to STOMP out childhood cancer. He was inspired by what Tony did at the Syracuse event and decided HE would shave his head that day and asked everyone to donate to him shaving his head! First he got to shave Lynne's head. Lynne was one of his nurses at Strong Memorial hospital, she was one of Owen's favorites and he always had fun with her. Between monkeying around on the unit to learning turkey calls he enjoyed Lynne very much!!! After that Owen took the stage, needless to say the tears were falling down my face. It was very emotional seeing him go bald again, although this time was for a good cause instead of for chemo!! He kept looking at me saying "don't cry", but I did anyway!

The Sleeth family was there as well. Their son Andrew also was treated at Strong, however the beast of Cancer took their son from them. We will continue our battle against cancer in memory of so many of our friends we have met along this journey. We also met a new friend Charles Salina, whose wife works on the bone marrow transplant floor but we did not know her then as she just came back when we were there. Charles is a US Marshall and gave Owen a special US Marshall pin to wear. He told Owen he can call and get a tour of the federal building where they bring the 'bad guys' anytime!

After the event we went to Bugaboo for dinner. Thankyou Aunt Susie!!! This is Owen's favorite restaurant, and it is a great choice! Finally after along day we headed home. Ready to turn in already!!!!

Next up is our battle against cancer in the Relay For Life walk, Please join us in our continued fight against Cancer. It has forever changed our lives and we will do all we can to constantly pay back for all that was done for us and hope to prevent kids from going through this, and to stop any more children from losing their battle.

What a great weekend!!!! Have a great week!

Friday, May 1, 2009 6:25 PM CDT

Things are going well and Owen is back to normal and back in school!!!

Wanted to let everyone know there is only 35 days left until Relay for Life!! I am in need of walkers - especially those middle of the night times! :-)

I have tickets for the Wii or 50/50. Please visit the link above or below to donate or contact me for raffle tickets or to sign up to walk.

I need to know by May 11th for walking to guarantee I get all the T-shirts I will need.

Thankyou ahead of time for supporting us in this great event. Owen and I will be there all night, because 'Cancer never Sleeps'.

Saturday, April 25, 2009 6:16 AM CDT

Making progress to feeling better! Finally around 10am yesterday he was smiling and out of bed and feeling a little better. He stayed out of bed all day, even did a little bit of homework - yeah!!! Later when I got home he tried to go out and play some basketball but it hurt to throw the ball. We came in and played a little bit of cribbage! He is practicing to learn for when we go to BC, canada this summer, there will be some big cribbage games happening!

We spent the night on the deck jamming some tunes and me and the boys dancing up a storm. Oh how wonderful it felt to be outside!!! Today is going to be in th 80's - I am in heaven!!! Owen started to feel awful again, but no fever. I think it was more the nighttime thing that things get worse? He was asleep in no time, worn out from his first real day of being up and about.

This morning he is awake and coughing quite a bit, but hopefully coughing and moving around some of that junk in there. Looking forward to a good day and outdoor time today.

This weekend we are going to the benefit for Zach Saurini. He played ball with Jake last year. Zach has Oculo-Ectodermal Syndrome & Jaffe Campanacci Syndrome. These syndromes have caused Zach to have tumors on his long bones, length discrepancies on both arms & legs, along with the bones being very brittle. Zachary has undergone many surgeries to correct this. He is a sweetheart and loves his baseball but unfortunately this is disease is going to prevent him from playing anymore.

Other than that we hope for Owen to keep improving and this weather to stay for good this time! I am off to Utah next week to finish out the training Program for the users. Utah is beautiful in the mountains.

Have a good week!

Wednesday, April 22, 2009 6:48 PM CDT

Owen has pneumonia!

The xray forms did not come in the mail and I didn't want to wait any longer so I asked the doctor's office to fax them to the hospital. I asked for a chest xray as well because he was complaining of chest pain. Off to the hospital - they did the chest xray but said they didn't get the sinus xray order. I figured I could come back tomorrow to do that if I needed too it was easier than going back and forth again with the hospital and doctor's office, he hadn't been complaining of headaches anymore.

Well after the xray they told us we needed to sit tight while they called it into the doctors office as it didn't look 'good'. So doctor called me back and he had pneumonia and they were calling in a prescription. I need to get a copy of the xray up to 5C for Dr. Cherrick now too.

I was soooo happy to hear this, pretty weird right??? I was doing the 'happy dance' in the waiting room that we had a diagnosis and a reason for his fevers vs. viral or the black ugly thoughts of relapse that always find away into my thoughts when he stays sick for long periods!! I even got a chuckle out of Owen for my dance!

Don't know why, but Owen likes to 'hide' his pneumonia. This is not the first time his lungs sound good but an xray proves otherwise!

Hopefully the meds kick in quickly and he starts to feel better, he just feels awful right now. He is tired of feeling sick!

Thanks for all the well wishes here and on facebook!!!

Monday, April 20, 2009 7:34 PM CDT

Well Owen feeling better was short lived. He woke up at 1:00 am with a fever. I have had enough and called for a doctor appointment today. His shoulder started to really bother him today. He was SCREAMING in pain and just hysterical. Mom called me and we headed to the doctor a little early hoping to get in, but they were backed up so we got to sit and wait longer... oh well good thought.

I did get him calmed down on the drive over. I let him play his Green Day CD at a volume no one should listen to music at!!! He perked up and said he needed a distraction to keep his mind off of the pain. He also had tylenol in him and so that could have been kicking in by then.

Needless to say the doctor found nothing wrong with him other than the fever. He has had NO other symptoms and she didn't see anything to alarm her. I told her of the bad headaches yesterday and how he had one dizzy spell, but that could happen with a bad sinus or migraine headache. The shoulder pain could have been due to his fever spiking. We all know Owen can send him into a panic and he can over dramatize. So ok I am calming down and go back with the notion this is all viral, hate that word!!! I do fine for a few days of him being sick but when it lingers you can't help but let those awful thoughts start sneaking in. Owen asked why Jake got over his fevers in 1 day and he was on day 5. She told him that usually the second person to get it, will usually get it worse plus he is older, ok sounds like the logic I already told him. So we were sent on our way, if he is not better on Wednesday she wants me to call and she will order some xrays to check for sinus infection as he is quite congested.

Owen was quite chatty on the way home and feeling better. We stopped at Blockbuster so he could rent a movie to watch and then we headed home. He plopped on the couch to watch his movie and was laughing away, so I am feeling better. Then he said the pain in his shoulder was coming back. I gave him some ibuprofin, another 1/2 hour later he was in total panic mode again with the pain in his shoulder. I got him a heating pad, but I wasn't even allowed to touch his shoulder, and he was just sobbing. So out the window went my thoughts of over dramatizing, he was in pain and I could tell, the movie did not distract him at all. Another 20 minutes the ibroprofin had kicked in and he was fine again.... what the heck is going on!!???

He is starting to get a fever again now. Just no rhyme or reason to this! I guess we hang tight and see how the next day goes, and by wednesday it will be day 7 of fevers and I will ask for blood work as well as that xray she said!!!

Till then I will breathe and not let those ugly thoughts move their way in, he is just fighting a very nasty bug and it is taking its time clearing! Thats my story and I am sticking with it!

Friday, April 17, 2009 8:07 PM CDT

Owen is on the mend after having fevers since Thursday! Today he had a slight fever of 100.6, and a few headaches and feeling a little drawn out from so many days in bed, but otherwise ok. I even managed to talk him into coming outside to get some fresh air. We played a little basketball, although he tired easily, he was still trying and the air definately perked him up!

***************************************

Well I am back from Jackson, Mississippi. It was nice to have the warm days and nights! Although those southerners sure like their AC!!! Burrrrr

Owen has caught the bug... he started with 103 temps last night and continues today. Although he just went on an eating spree, cinnamin rolls, chicken noodle soup, and a bagel. Hopefully that is a good sign he is on the mend. When Jake was sick last weekend it was only for 24 hours so fingers crossed Owen is the same!!

Tyler's nose had stopped running but today it was nasty again so he may end up at the docs this weekend. I had hoped to have Chris take him while I was gone and get him over it, but he said his nose had stopped, should have known better, Tyler never gets over it without an antibiotic.

I took today off to have a fun day with the boys, but Owen getting sick put a wrench in that! Chris was home by noon so I took Tyler, Jake and his friend Caleb miniature golfing and ice cream. They had a blast and the belly laughs they had were priceless!!!

Hopefully Owen feels better and we can do something fun with him too!

Tomorrow is the final day of bowling and the banquet - yeah!!!! Bowling is such a long season.... Jake has a birthday party in the afternoon.

I purchased a Wii system and am going to have a raffle for it for Relay for Life along with a 50/50. Tickets for the Wii are 1-$2, 3-$5. 50/50 are 1-$2, 3-$5, or arm length for $10.

Please say a prayer for John Walls and his family (link below). He is having a heck of a time fighting this damn cancer. It has come back and the tumors are growing fast. They are not having any luck treating it. They have now had to start Hospice. I met the Walls family while on this road of Cancer and have followed John and have become friends with his mom, even though they live in Oregon. I hate Cancer!!!!! It just is not fair that no matter what you do it can come back again and again and again... when will it end??

Monday, April 13, 2009 5:09 AM CDT

Hope you all had a very nice Easter!!!

Things have been good. Owen spent the night Thursday at Aunt Anna's house. He altar served that night and then they went 'church hoping' for the night before settling at Aunt Anna's for the night. The next day they went to lunch and Owen had a great time catching back up with Anna. She was Owen't day care until he started school. He loves spending time with her and it has been way to long...

I was finally able to join my Mom's Night Out group thursday night, last time I was out was December. Oh how I missed it!! It was a night of laughs and just way too much fun. I met a mom who's son has just relapse after having a Bone Marrow Transplant a year ago. He also has the dual form of Leukemia. We had lots to talk about!!! They do not know yet if both leukemias have come back or just one like with Owen. Please keep Ryan Orts and his family in your prayers as they start down this road again. I think coming out with the group is just the medicine needed for a Mom in need, it allowed her to 'laugh' again and know there is a support team to lean on!

Saturday we were the sick house. Jake had 103 fever all day. He was fine once the motrin kicked in, but you knew when it was wearing off! He kept asking to have his friend Caleb over. I told him he could not since he had a fever. He asked if Caleb came over would Caleb get sick and then he would be better? No..you would both be sick. To this he responded - Oh - then we COULD play together because we are both sick!!! Good try but I don't think that is the goal.....

Tyler's nose has been getting bad again. I was hoping we were done with this for the year, but with the cold weather back his system has gone down again. He was not feeling well at all and was in bed by 6:30 and slept until 8am on Easter!!

Owen was the healthy one!!! He was sooooo pleased that he is now the one who is not sick!! Not that he wanted his brothers to be sick, but how great it was that he was not!!! So only Owen bowled and I for once got to sit and watch him bowl!! He was very happy to have me to himself.

He had a birthday party at the Y after bowling. They double booked the party room so a bunch of 12 year old boys got the toddler room to play in!! Yeah it was not pretty, they had a blast playing with all the kid stuff!!! LOL

Easter was great. Jake was up at 6, then 7 and couldn't wait any longer so he woke me up and followed his egg trail to his goody basket!!! Owen and Tyler were up aroung 8 to find their goodies. Easter Bunny sure is good to the boys! We went to springside for Brunch, LOVE their cheese souffle and seafood newburg! Easter Bunny was there so Tyler got his hugs in. Jake had no fever on Easter - so what ever it was, went away quickly. Tyler's nose was still bad, but better than saturday so I think the long sleep helped.

We went to Papa Freds and Grandma Lea's in the afternoon for desserts. In their Easter Baskets was Pop Rocks - remember them?? Well we gave them to Jake to eat and didn't tell them they would start going off like fireworks in his mouth! It was so funny to see his face, I think you could hear us laughing for miles!!!

So it as a very nice weekend!!!! The boys are off from school this week, and I am on my way to Jackson, Mississippi for work! I am taking friday off to have some time with them. This trip was just bad timing.... I have to go to Utah the end of the month too, then hopefully no more travel for a bit! At least it is in the 80's there though - I am ready to feel the heat!!!

Owen has his monthly checkup tomorrow. Chris will take him since I am out of town. I will let you know how he makes out. Tyler has to go for an xray this week, to check his spine. This is just to allow him to participate in Special Olympics. I am going to see if we can't start getting him involved in more of these events around the area.

Have a great week!!!!

Monday, April 13, 2009 5:09 AM CDT

Saturday, April 4, 2009 7:50 AM CDT

Good things are happening. Owen has had a couple of great honors for him!!!

1. Ask to be a Safety Officer at school. Him and 14 other students were 'sworn in' by the resource officer at school on Thursday to help monitor and keep kids safe at school. He was choosen due to showing leadership, maturity, reliability, following rules, punctuality (doesn't get that from his mother!), sound judgement, good attendance (yeah - haven't had that for years!), courtesy and respect for classmates!

2. Asked to drive the Nucor Stockcar in the Soap Box Derby on May 23rd!! He has his first practice run this Sunday!

3. Uncle Steve wants to DRIVE back from Canada (on the west coast) this summer and take him to all the national monuments (yellow stone park, Mount rushmore....etc) along the route. Steve and I did this with Mom and Dad when we were in our teens and it is a trip neither of us will never forget. What a great time he is going to have!!! I want to do it again!!

4. Owen will be a guest speaker at the St. Baldricks Event in Rochester on May 3rd. His nurse Lynne Stiefler organizes the event and asked Owen to be a part of it!!! He will also get to shave Lynne's head!!! He loved that part last year, and is excited to be asked again this year!

He is one lucky boy I think with all these great honors!!! But he deserves it, he is a really good kid and we couldn't be prouder. Just got his report card and he is on Honor Roll again - 3 marking periods in arow! Can't seem to get to High Honor but Honor roll is awesome!

Jake and Tyler had good report cards as well! Jake has been struggling and we saw alot of progress this last marking period with some extra hard work at home! Need to keep it up and catch him back up to his classmates. Tyler's behavior has been so much better and we are seeing that allow him to keep improving too!

This weekend is filled. We have bowling, then Owen has to altar serve. His friend Thomas is coming over to spend the night. Jake and Ty have a birthday party. Chris and I have a retirement party for my boss. That is all today!!!

Tomorrwo Owen has his first practice for the soap box derby. Tyler, Jake and I are going to the playhouse disney show in Syracuse. They will probably be the oldest kids there but Tyler is sooooo excited about it!

Then we need to rest!!! Hopefully the weather will not be as nasty as they say! When is spring coming????????

Next week is Mom's Night out, I can't wait, it has been too long since I have been able to have my fun night of laughs with the girls!!!

Have a great week!

Sunday, March 29, 2009 2:52 PM CDT

Things are going well.

We have had a busy weekend!!!

First Friday was an SU night, very sad ending though as we hang up our shoes for the season.... we had a good season so can't take anything away from them... with most players returning it will be another good season next year we hope!!

Saturday we enjoyed the awesome spring day and had a BBQ. We had Dad and Leanne, Ron and Lee, and Don and Joanne over to celebrate the March birthdays and enjoy the afternoon sitting outside!!! OH I am so ready for summer!!! The taste of it is so nice!!

Sunday we headed to my friend Lori's mom's house. Lori and Dave are up from Tampa with Natasha and their precious new baby Jackson for his baptism. He is 2 months old and cute as can be. Jackson is all about paying attention to what is going on when he is not sleeping. I got lots of snuggles in, although me and Owen had to fight it out a few times on who's turn it was!

Owen is feeling well. He is getting involved in inter-mural basketball - yeah some exercise! He has also been chosed at school to be on the Safety Patrol Program.
He will help remind students about safety, and be a part of bus or fire drills. He was chosen due to his sound judgment, courtesy, respect and desire to help others!!! Great Job Owen!!!

Getting ready to move into full swing for relay for life. We are looking to do a couple fundaisers and will probably start a 50/50 raffle for it. So look for news of upcoming events!!!

Have a great week!

Monday, March 23, 2009 5:04 AM CDT

Things continue to go well.

Yesterday I spent the day at Kitty Hoynes in Syracuse for the St. Baldricks fundraiser for childhood cancer. This even raises money for research and syracuse is the top 4th fundraiser in the WORLD!!! I can see why - there was so many people there shaving theirs heads to raise money, kids, women, men... the stage was always full with shavees!!! I spent the day with several of the moms from my Mom's Night Out Group. Stacy Martin - one of the mom's in my group, was brave enough to be a shavee - how awesome!!! Her and her husband sat side by side for the buzz cut, as their son Noah collected her hair as it fell to the floor, how cute was that!!

At 2pm we all took the stage with Dr. Cherrick to talk about what the event means to us and talk about our journeys. This event had very special meaning as we lost another one of our children Heather Oney on Friday to Cancer. So for all of our success stories of Cancer that were on stage, there were also families on stage that do not have that same story, and the Oney family has now joined that group. Until all Childhood Cancer stories are success, the battle has not been won!!! Terry's son Tony was on stage with us and is one of the success stories, he wanted to jump in on the festivities, and after having to be bald several times during his battle volunteered to shave his head again that day, so a bucket was passed through Kitty Hoynes to raise money for him to shave his head, it came back FULL - over $700, wow!!! What a great group of people to jump up and support this awesome teenager! When I had left at 3pm, the total was just over $230,000 and there was 3 more hours to go!! Last year Kitty Hoynes raised over $300,000, that is just amazing.

We will attend the St. Baldricks in Ithaca next weekend. Another Mom, Christine Brouwer who lost her precious little girl Mira, less than a year ago will take the stage for a second year and shave her head. Wayne Durling, Dad to Daniel (husband of Jacqui in our group) will also shave his head. Should be another great event!

Oh course with all the activity yesterday, I still was able to keep track of SU! LOL There were several TV's going and I got updates on my phone. They help off the speaches until the game was over and another victory for SU!! Sweet Sixteen here we come!!

Tuesday, March 17, 2009 8:05 PM CDT

Another Good Check up for Owen! His white count was a little high but he may be fighting a virus. He woke up last night at 3:30 and was throwing up. It was the worst smelling throw up I have ever dealt with!!! Yes even worse than chemo throw up! He finally settled back down around 4:30 and fell asleep. This morning he had diahrea. He was achy and weak this morning but that is normal after his night. But he is feeling fine now and was back to his normal cheerful self from late morning on. So who knows!!!

We did a big no-no though!! We made our usualy stop to 7H after our 5C trip to visit. A friend Brennan was inpatient so we visited with them for a while. After we left it hit me... what were we thinking going to 7H after being sick during the night!!!! How quickly we forgot the rules!!! Hopefully he spread no germs!!! Arghh sick over this!

Happy Birthday to Grandma Pat (my Mom) a St. Patty's day girl!!! We Love you!

Our Relay for Life Fundraiser is off to a great start! Check out the website below and join our team - we are looking for walkers or supporters. Tomorrow we have our first team captain meeting to really get things rolling.

This weekend Owen and I will attend the St. Baldricks Fundraiser at Kitty Hoynes in Syracuse, and watch some of my brave friends from Mom's night out, shave their heads for Cancer!

On a somber note... a friend and co-worker lost his battle with Cancer after a 2 1/2 year battle. Bob Lawler worked at Nucor for 30 years, we are very sad to have one more person have this beast beat them. Our sympathy goes out to his family. As Owen said in his speech - NO ONE should have to go through this, not a child, not an Adult... NO ONE!!!!

Sunday, March 1, 2009 7:09 PM CST

march 7,2009
Here is Owen doing his big speech!!! He did awesome and we are so proud of him. he read his speech, but also put down the paper to just chat and talk about how hard cancer is on all and how NO ONE should have to go through this!!!! I am trying to figure out how to get the video off to post. But there are many mini videos on the dvd, and they don't show separate when I look at it through windows explorer. I think I need some software but hopefully I will figure it out!!!

The photographer from the Citizen would like to follow Owen and Daniel (the other boy who is co-chairing the RFL) and see 'how' they are getting their lives back to normal. Owen is all for that!!! She wants to follow them to their activities, with friends over the house, at school, anywhere!

The link to the newspaper article is at the bottom, or just go to www.auburnpub.com and search for Owen.
*************************************

Today we had the Auburn Citizen Paper stop out to the house to interview Owen!!! They wanted to meet Owen and hear his story about what he has been through and about his speech he will be doing Wednesday night for the big Kick off meeting for Relay For Life.

Owen did great remembering his days of when he was first diagnosed through to the end of treatment. We laughed remembering how he thought it was awesome when he first found out he had leukemia and would be staying in the hospital for a several weeks. He was going to get to play video games as much as he wanted and just hang out !!! Wow - great!! Yeah he was definately our 'rock' and got us through those first months with his attitude during those tramatic months!

He admitted afterwards that he was terrified and so nervous of being interviewed, you certainily wouldn't have known it watching him!!! So look for it in the Auburn citizen Tuesday. (http://www.auburnpub.com/) I will post the link to the article once I have it.

If you can please stop out at the Relay For Life - Kick Off Event - Wednesday March 4th at the Knights of Columbus in Auburn on Market Street. Owen will be speaking and we are very excited and proud of this great opportunity for him! He is one amazing kid!!!

Tuesday, February 17, 2009 7:30 PM CST

Owen had his monthly checkup today and I am thrilled to say he is looking great and counts are awesome! He is 10 months off-treatment, I can't believe it! This has flown by and of course with things going well we are enjoying every minute!

We did discuss his back-aches that he has at school. The nurse had called me and Owen had gone to her for hot packs or ibuprofin everyday for 29 days straight. He goes every day at the same time, beginning of Social Studies. He has only complained of back aches at home a few times. Since being on vacation it has not come up at all. So this leads us to a couple conclusions... Owen is using it as an excuse to get out of Social for a little bit or maybe the hard chairs / slouching are causes discomfort at school. We will continue to watch, and Owen knows we are paying attention to this know to so if he is looking for a little out during the day this will end.

Relay for Life Site is up and running. I have posted a link above and below for Owens site. Nucor is again going to match all funds raised by the team. Last year that brought a grand total of over $13,000. I know that is a big number but we are hoping to at least keep that going or better yet beat it!!! You have all been awesome in the past in supporting Owen.

Please stop out and see Owen at the Kick Off meeting March 4th at 5:30pm at the Knights of Columbus. He will be making a speech on why he Relays and what it means to him to be a team captain.

The Relay this year is June 5th -6th from 6pm -7am. I am looking for walkers and am assigning 1 hour time slots, so if you are interested in joining the team let me know!!! We will again camp and hold the fort down during the wee hours!!

The kids are on break this week. We are going to Niagara Falls this thursday and friday to the indoor water park. We have never been but have heard good things, so we are looking forward to it!!!

Have a great week!

Sunday, February 8, 2009 7:27 AM CST

A star is born!!!

The play - Music Man Jr - was a success and Owen was so happy to make production this year! I have posted a slide show of pictures from it - enjoy!!! I notice many pictures Owen had his eye's closed, thats bad timing, he really didn't do it with his eyes closed!! It was a sellout both Friday and Saturday night and of course I went for both!!! The kids did an awesome job!!!

Jake was in his glory that his best buddy Thomas was there Saturday to sit with, and Tyler had Kim to sit with Saturday! They were both really good both nights.

Owen had the Cast party Saturday after the show to celebrate. Each of them received a Candy bar with all the cast members names on the back and Music Man Jr production logo on the front - thats a keeper!! Well we will slide the candy bar out for him to eat!! LOL

Owen says he will be 'sad' today... all the hard work for the last several months and now it is over...

Otherwise things are good here. I have to go to Charlotte monday-wednesday and then thursday is Mom's Night Out, which I hope to make as I wasn't able to go last month.

Grandma Pat got a new dog, a Pug! The boys love her. Course she is little, so she is a puppy to them. They are already fighting over who she will sleep with when they stay with her while I am in Charlotte!!!

Alas my SU team is struggling... and their season doesn't get any easier. They are in the meat of Big East competition, just hoping they find their niche and start turning things around!!!

Have a great week!!!

Tuesday, February 3, 2009 5:40 AM CST

I just wanted to post a quick update on Owen's Play as I have had many inquiries!

The Music Man Jr.
Where: Union Spring High School
When: February 6 & 7
Time: 7:30 PM
Cost: $5.00 per adult
$2.00 Students/Senior Citizens
$10.00 - max per family

Senior Citizens are welcome to attend the dress rehearsal on Thursday @ 9:45

They are in full swing right now, and practicing every night! Owen is so excited and walks around the house singing all his songs! He is so happy he is going to make the big night this year!!!

So come on out and enjoy the show!

Tuesday, January 27, 2009 5:24 AM CST

We are chugging along here and things are good for the most part. Owen had a fall at school yesterday. Not sure how it really happened, but he said he flipped forward in his chair and then he banged his nose. His eyes watered up and he felt very dizzy. He was sent to the nurse and had ice on his nose, and was kept to watch for a little bit. Once something happens to Owen though that is it, he is freaked out.. so he did end up coming home. He slept the afternoon away and he was fine. He said he was very scared though as he just felt really weird after he hit his head. So we are very happy this was just a minor injury!!!

Report cards are out. Owen is still on honor roll although he did drop in all of his classes but one. Mostly due to some homework bad scores, so I guess I need to make sure he is completing this alot more closely!!! Jake is making improvements in reading but he still needs alot of work in that area as well as his math, and just listening skills. We will continue to work with him at home and hopefully catch him up! Tyler made some great progress this marking period and I would say it has to do with his turn around in attitude and working hard vs. fighting being in school!

Owen's big play is fast approaching. It is next Friday/Saturday Feb. 6&7 at 7:30 at the high school. The 'Music Man' is the play this year and he is very excited!!! Last year he worked so hard, and then got sick right before the play and missed the big night! So he is very nervous as it approaches that something will happen, but I think he is in a good spot this year, no chemo, no worry of fevers, so fingers crossed he will get his big night!!!

The weather continues to be so cold.... how much longer till spring??? I want to take the boys picture in front of the snow bank across the road. Since we are out in the country in the middle of fields the wind just blows the snow across the road and they have to keep pushing it back. Well the snow is probably 10 foot tall across the road if not more!!! It is amazing to see these banks!

Otherwise life is good, the boys are still bowling, Owen is in the play and guitar. Jake has karate. I am looking at a friday night soccer night for Tyler for special needs that a friend told me about. I think he will like it, I just like my Fridays to come home and say 'ahhhh' the week is over time to relax! But we'll see!

Owen made his debut as Altar Boy this past Sunday. He was very nervous but did a great job! We stayed after as it was a zita dinner that night, so how perfect was that. I soooo need to take the boys more to church. Jake was restless but did pretty good. We were there 20 minutes early for Owen so it was a little longer than normal. At one point he asked me where Owen was and I told him up with Father. He said 'What?' How did he get home with Daddy??? Hmmmm, that would be Father, as in the priest. Whoops!!! Ok, so the plan is we need to go!!!!

That is one thing as our life settles down that I see we need work on in all areas. We need more structure and routine. We have been living day by day and just winging it, that we don't have the routines or plans. I think beginning to put this part of life back together will help in all areas. Even if we 'plan' to do something I think we still hold our breath on whether it happens or not, as the norm is, you can plan but things will change!! So now we are seeing it is not changing, and we can plan!!!

St. Baldricks is coming up fast. Several of the Mom's in my Mom's night out group will be shaving their heads again in honor and memory of their children. I will post more on their sites if you would like to donate. Owen and I hope to make the event in Syracsue this year, but ah yeah, I am not participating LOL.

Have a great week!!!

Tuesday, January 13, 2009 7:44 PM CST

Owen had his monthly checkup today and all went well. His counts are beautiful!!
WBC 9.5 normal (4.5-13)
RBC 4.26 normal (4.0-5.2)
Hemoglobin 13.7 normal (11.5-15.5)
Platelet 293 normal (150-400)

Dr. Cherrick re-confirmed the xrays were fine. They did show something might be going on with his AVN, but nothing with leukemia! Since he is not having pain from the AVN she is not concerned but the Xrays are not the test to give really a good feel for AVN and it may not even be anything going on with that. She had me bring the xrays to Dr. Palomino's office (the orthepedic doc), and if Dr. Palomino feels a MRI or better xrays are needed she will contact us.

So yeah, all is well. As Dr. Cherrick said... the pediatrician would not have sent any other child for those xrays to begin with, it is only because it is Owen, and they need to start treating him as a normal child too. I have mixed feelings on this. As much as I hate getting all nervous and freaked out if they feel more tests are needed, I am also very happy they are taking such precautions. When Owen relapsed last time it did not show in any blood work. It was only by Owen finding the lump that we knew. If we had waited for it to show in the blood work it may have given the leukemia a chance to really grow inside him, where it was caught before it spread. So it can go both ways... too careful and not careful enough!

The Relay For Life fundraising has begun!!! Right now there is a Daffodil sale going on - to help us all think Spring!!! The website is listed below or you can call me 252-1259, email me: awawrzaszek@hughes.net and let me know if you would like some. The flowers will be delivered to Nucor the week of March 18th and you can pick them up there or I can deliver.

Here are the items:
$10.00 - 10 fresh cut daffodils
$10.00 - potted Daffodil
$25.00 - Boyd Stuffed Bear with 10 fresh cut daffodils
$25.00 - Gift of Hope - sends daffodils to a cancer patient and part donation towards Cancer research.

50f the money raised here will count towards our Relay for Life team. I will be getting our site up soon, and we are going to look at doing some fundraising activities this year to increase our already awesome team total!!! I will keep you posted on this!!

Have a great week!

Thursday, January 8, 2009 5:27 AM CST

Happy 2009!!!! Happy xxth Birthday Dad!!!! If you know Dad you know this is the big one!!!! I know he is excited about this one :-)

Things are going well. We had a bit of a scare again. The pediatrician called me last week on Friday at 4pm, and let me know that the xrays Owen had on Dec. 26th had a bone lesion on his right underarm!!! His lungs had been clear which is what the xray had been for, but when she received the results she noticed they did see some abnormalties. She did not know with his AVN history if these abnormalties were related to that or not. Both Dr. Cherrick (for Cancer) and Dr. Palomino (Orthopedic for the AVN)were out until monday. They would probably want to see the xrays and I would need to pick them up by monday and bring them to them for review. So here I was crying at work and freaking out, 'what is a bone lesion!!!' Needless to say I spent some time on the internet over the weekend and it did nothing but make me feel worse! I finally sucked it up and told myself NOT to panic, it was OK!!! Sunday night was a horrible night of sleep. I got the boys on the bus and headed to get the xrays. Dr. Palomino was in surgery all day and I was waiting to hear from Dr. Cherrick on whether she needed to see Owen. I started in route anyway to the hospital because to top it all off I was suppose to be on a plane to Wisconsin at 1:30 that afternoon!!!!!! Dr. Cherricks office called and had seen the faxed report and they were not concerned and did not need Owen but did want the xrays. I was pulling in to the hospital at that time so that was good. As I tried to be optimistic I gave the nurse the xrays with tears welling up in my eyes and asked the dreaded question 'Do I need to be freaking out right now????' Missy gave me a big hug - gotta love her!! and told me NO, they did not see anything that concerned them. Dr. Cherrick would have Dr. Katz (sp?) and orthopedic look at them in Dr. Palomino's absense. She told me it was OK, and to get on my plane, Owen was fine. Especially if he was having no pain, or fevers. I was on my way back home when the phone rang and it was Missy. The Doc had reviewed the film again and it was his schelorisis or AVN bone stresses flairing up in his shoulder area but they did not see anything indicating Leukemia!!!!!! Oh I am sooooooo happy! It is so hard, you think you are living the 'normal' life but you are always walking the normal life on the edge of a cliff, and feel like you can fall at any moment. It really shows how fragile we really are in living this normal life because I will crumble in a second! I imagine we will hear more from Dr Palomino in regards to his AVN, but truly Owen has not been complaining of any pain in his legs or shoulders at all. He has not had any Vicodin since the end of August. If he is achy it is generally after a hunting excusion with Uncle Steve or some other activity and it is more in his back or upper legs, which I think is due to his very inactive life style doing something!!!! So for now we breath easier and are so grateful this has turned out ok.

I did get on that plane and made it to Wisconsin and back with only a little delay on the way home. I made record time with my normal travel disasters!!!! Wisconsin is basically the same as here as far as weather. The people from Alabama traveling as well didn't have my same outlook on the weather!!!LOL

Last night was another SU win!!! This is an awesome year so far and we are really enjoying it! Owen came with us, and after the spectacular play by Johnny Flynn to Jackson for the slam I jumped out, arms flying and knocked his Pizza from his hands. OOPs sorry O! He kept close watch on me the rest of the game as his bottomless stomach continued to eat everything the dome offers!

Tonight is Mom's Night Out, and I am hoping to make it!! Weather is looking a bit iffy for going to Syracuse tonight, but I will play it by ear. I love my Mom's Night Out with this awesome bunch of women!

Looks like a quiet weekend, we will have a little family get together for Papa Freds birthday and hopefully some more sledding!!! We went New Years Day and it was awesome, lots of snow. We have rain and ice, but today it is back to snow so hopefully the hill will be good by this weekend.

Have a great week!!!!!

Sunday, December 28, 2008 8:24 AM CST

We survived Christmas, the anticipation of it arriving was at an all time high for the few days leading up to it!!!

We had a several wonderful days before, spending them with the family which is really what this time is about- course the kids still want the presents!!!

We spent Sunday at Dad and Leannes with the Tortorici family. Which is the home photo here with all the Grandkids. Looks like 1st generation was girls and 2nd is boys!!!! We played the Yankee Christmas - where everyone brought a gift and we got to steal the presents from one another - that was a lot of laughs!!! The boys loved playing with Robert, they were all buddies in no time!

Christmas-eve was spent at Aunt Shelly's and Uncle Petes with Grandma Bonnie, Hank, Aunt Susie and of course PJ and Lexi! I told Lexi (2) how me and her would be shopping buddies because we both loved shoes!!! She had to show me her shoes many times!!! Shelly made a good-ol Polish feast which my husband loves!!!!! By the time we rolled out of there - we had some tired but excited boys on the ride home. Amazingly they all got ready for bed with the sparkle in their eye that Santa was soon coming.

Owen had the restless night. He woke several times, which means I woke several times so he could tell me how he couldn't sleep! At 6am he woke me to tell me he could hear Santa's sleigh bells and I had to come listen in the hall. I think all I heard was the fuzzy sleep in my head! Finally at 7 I gave up and Owen and I got up so he could browse the tree. Our tree looked quite pathetic this year, with all the 'little' gifts it was not over-flowing into the living room like normal, our boys are getting big :-( and the gifts are smaller.

At 8am I let Owen go up and wake up Tyler and Jake, who descended the stairs rubbing their eyes, but it took no time to wake up and get into full swing of the morning. There were many squeals of delight so I think Santa and Mom and Dad did a good job with the gifts!

The rest of the day was filled with Grandma Pat, Papa Fred, Grandma Lea, Papa W and Grandma Lee slowly fill up the house. We had a great afternoon filled with family and ended with dinner and everyone ready to relax and work off the excitement of the day.

We have spent the next few days opening all the new things, shopping with gift cards and just enjoying being home and together. Yesterday the boys and I went to see Bedtime Stories - which was really cute. Today will be a lazy day with some more time spent just enjoying the boys and then tomorrow is back to reality and work :-(

New Years is fast approaching and we hope to have a wonderful 2009. Owen will reach 1 year off treatment, Tyler will be 10 (OMG) and Jake will ... well probably be Jake - not sure what he will bring yet :-)

Wishing you all a great end to 2008 and Happy 2009!!!!!
Thankyou all for your continual support and well wishes for our family, we will never be able to tell you how much it has meant all these years - and it has been many - 5 years!!! Thankyou Thankyou Thankyou!!!

Love to you all - The Wawrzaszek Family!

Sunday, December 21, 2008 7:33 AM CST

We are winding down to Christmas so the excitement in the house is very high!!!

This week was filled with busy times. We had 2 SU games. Monday was a nail biter for sure and ended with a buzzer beater that silenced the dome! So we have our first loss, but I have to say Cleveland State definately played their hearts out and they were the winners for sure. Wednesday was another game and back to the win column for SU.

Friday we had a huge snowstorm here that dumped 10 inches or more of snow on us in a few short hours!!! Even Nucor closed down at noon and sent us all home! I think I drove through the worst of it though!! It took me about 40 minutes to take my 10 minute ride home! The snow did stop around 2 but then the winds picked up and continued to make for a nasty day!!!

Finally late afternoon the weather broke and since we are New Yorkers and snowy roads are nothing for us LOL, we headed to Dad and Leannes Christmas Party!!! It appears the storm from the day did not stop to many from coming! So the boys had a great time playing with the other kids, and ended up dancing the night away with all the nieces and their friends.

Saturday was bowling & the christmas party there. Then off to the mall for our Family Christmas photos. I have put the link above for all to see. I was a little late this year so I don't pick them up until the 2nd. Then off to see Santa Claus!!! The traditional one was not in the center of the mall and Tyler was very upset, but alas there was a note saying their was a Winter Wonderland inside of Bass Pro. So off we went and sure enough there was Santa, activities to play and even Reindeer. Tyler loved the Reindeer and didn't care that they were fake! He touched the nose and asked about Rudolph. I told him Rudolph wasn't here. He asked me - Fly? and pointed to the sky. On Ty-Ty Roof? Yep he will be coming soon!!! The boys played with the various target shooting activities and then it was time to head home.

Last night brought us to my cousins christmas party. Always alot of laughs and fun. This is what Christmas is truly about, all these get togethers and laughs and family.

Today we head back to my Dads for an early Christmas day with them and Leannes family. We opted to skip Adult presents this year and again are doing the Chinese Christmas game exchange where you all bring a gift and then one by one you get to either pick a gift or steal someone elses. Should be a lot of laughs and fun!!

The weather is suppose to be nasty again today and right now there is no snow but the wind is making it look like it is snowing hard!! Owen was not feeling well last night and is starting to cough again. I am hoping his pneuomia has not come back. He says his chest is burning. I am waiting for him to get up and see how he is feeling this morning on whether we need to head to the doc or not.

So now we wait and hear Jake tell me everyday how many days till Chrismas with the sparkle of excitement in his eyes. Tyler tells me Daily Ho Ho Coming, and Owen is just itching so see if his wishes come true!!!! Yes the excitement is high, but wouldn't trade it for anything, One day they will be all grown up and I will truly miss the craziness and magic a child brings to this day!!!

If I don't update again before I want to wish you all a Very Merry Christmas!!! We can't thankyou enough for all the years you have followed our story and the support you have given to us. Having our family together and healthy is the best Christmas Present I could ever ask for!!!

Sunday, December 14, 2008 6:54 AM CST

Things are good and busy!

Last Saturday we spent the day at the University Christmas Party. Tyler had to stay home, his nose was just horrible and I couldn't risk bringing him to a party with kids with cancer! He had started an antibiotic on friday but would need another day or so to kick in. Jake loved doing the arts and crafts and even tried the hula hoop contest. Owen mastered the bingo table and had all sorts of goodies for his wins. He spent alot of time playing Cards on a back table with Nick for pepermint candies!! It was great to see the 2 of them feeling good looking so healthy. Nick is just finishing his treatment so it is indeed a wonderful christmas!!!

Sunday we headed to Camp Good Days party in Rochester. The boys were a little bummed they didn't have the rock climbing this year. We enjoyed the day and as usual it brings tears to my eyes to hear some of the stories as the awards are given out or watching the DVD of the previous years many events.

Owen is going today to Carousel Mall to work at the Camp Good Days Kazoo Fest. He will be outside Best Buy between 12-2 so if you are at Carousel stop by and say hello! I will hopeflly finish the last couple things I need to get. Mostly wrapping paper and some odds and ends - you know underwear and socks - to try and fill up the christmas tree. After wrapping the gifts - it doesn't look like much. Course the kids gifts seem to get smaller and more expensive and have decided to spend special times together vs. presents with the adults so it definately decreased the number of gifts!!!

This week coming is more busy times. SU on both Monday and Wednesday (yeah we are still on a roll!!!) Then my Dad's Christmas Party for friends and family friday night. My cousins Xmas party on Saturday, and then back to my Dads on Sunday for a family christmas day and fun day of games with the immediate family.

Health wise all seems great! Owen still continues to get bloody noses which I hate!!! But I know it is dry in here. His room is defiantely not as dry and his nose bleeds have been during the day not night now. So will need to put some moisture in the air downstairs too. He seems to be more achy now so may be the cold weather is affecting him. But ibuprofin or alleve works just fine for the pain!!!

The snow is back! After SU yesterday I spent the day outside with Tyler. The other boys said is was too cold (and yes it was) but Tyler loves the 'snowy' and made the best of the outdoors! He is already asking this morning to go back in the 'snowy' but the wind is going so hard today that I think it would blow him away!!! I am wondering how the van will stay on the road to get to Syracuse!!!

Have a great week!!!

Thursday, December 4, 2008 5:29 AM CST

All is going well. Thanksgiving was wonderful! We remembered back that 5 years ago we were sitting at the Ronald McDonald house in Rochester after just being released from Strong from Owen's Bone Marrow Transplant. We were still in very new waters and had a long way to go. Well here we were enjoying dinner at home with Owen once again off treatment and had so much to be thankful for!

Christmas is in full swing now. I got 90 percent of my shopping done on Monday. Mostly need to get a few things for Owen. He is really hard. He either wants all video game stuff or things that are very expensive. He is still on the edge about Santa and I don't know what he is asking him for. He keeps throwing out questions about him, and really struggling with whether or not he believes. He is probably the only one his age that still does!

Last night was Owens Christmas concert. He was very nervous for some reason. You could see him on stage and he had the look... then he kept taking big breaths. He says he doesn't know why but he was! The concert was really nice, the kids did a great job and the songs were beautiful. Tyler was also very nervous the whole concert. He was rocking on my lap and making noises, and chewing on his hands. Once Owen finally came out, the 4th graders and band were first, he relaxed and enjoyed the concert. When we got home he lined up alot of his stuffed animals on 3 of the stairs and look the harry potter wand and conducted his own concert singing Jingle Bells! He was so proud. I think he misses doing the concerts. Once you hit 4th grade it is only kids who sign up for choir that do the concerts.

This weekend is filled with Christmas parties. Saturday is University Hospital's, Saturday nights is my husbands work, then Sunday is Camp Good Days in Rochester! Guess we will have our fill of celebration!

I received news that Nan Songer passed away. Nan was the education specialist at University. Many of the teachers may remember her as she came to the school with us twice to talk with the kids and parents about Cancer and what it meant so they would understand what Owen was going through. She was battling her own battle with Cancer as well. Owen and Nan use to have 'races' with whose hair would grow back the fastest. Nan was a wonderful person and Owen loved talking with her. She will be very missed by all..... Our hearts go out to her own family.

SU is in full swing and the gray hairs are coming out already on my head! We missed last nights game due to Owen's concert, but hey it was Cornell no problem right??? Well we learned they were down at the half, they did battle back but it was not a pretty night! I took all of the boys Monday night to colgate. I think they spent more time eating than anything else! Jake thought it was really cool when Paul Harris hung on the basket after dunking it!! They were very good though and it was fun. We left with over 10 minutes left, but we were up by 30 and it was a school night.

Have a great week and I will update after the parties!

Wednesday, November 26, 2008 5:50 AM CST

Owens monthly doctor appointment went well. His counts look great. WBC 8.9 (normal 4.5-13) Hemoglobin 12.3 (11.5-15.5) and Platelets 314 (150-400). Absolutely beautiful!!!! Dr. Cherrick thinks his bloody noses are from the dry heat in the house, and Tyler has actually had one. So we will try to put some moisture into his room to see if that helps. 3 of them were at night and 1 at school. Owen is officially 6 months off treatment!!! He no longer needs to take the Bactrim - anti pneumonia medicine on the weekends. So he is now officially Cancer-medicine free! He is taking the Augmentin again, we did fill the second prescription from when he had the pneumonia back the end of October. He was starting to feel crappy again and coughing alot. Dr. Cherrick agreed he did sound a little junky inside and thought if he was feeling better on it, to continue and hopefully get rid of this for good this time. He took one of his blood slides to view under the microscope at home. I 'messed' it up by putting it in an envelope and wiped alot of the surface oil off!!! Owen was very upset! At least we will be back on Dec. 30th and can get a new one and now I know we need to carry it home!!! His leg pain has been very good, he no longer takes vicodin, his PT at school has been discontinued and he is participating at full level in gym class again. He falls behind and is definately not as strong as the others, but he is participating 100gain! We have not been back to Dr. Palamino to get another look at the AVN since August. I need to make an appointment just to take a peak.

So how about SU!!! Yahoo, awesome game last night beating Kansas. Well not that I know other than the highlights on TV :-) I tried to stay awake, but with the game starting at 10:15, I knew my chances were slim. I almost made it to half time!! But I awoke to the wonderful news!!

The boys don't have school today, I do have to work but am thinking I will leave early, it should be a quiet day. Owen wants to help me with dinner this year. I like to get anything I can do ahead of time done tonight and then finish up tomorrow so I can enjoy the day. I told him his first job while I was at work was to clean up the living room, all toys, books, etc put back in their place. We'll see how well he does assignment #1.

Have a great day and Happy Thanksgiving to you all!!! We will count our blessings this Thursday and celebrate how well Owen is doing and thankful for putting our lives back to as normal as it can get. We are thankful for our nurses and doctors and all the wonderful friends we have met along the way and the support of all of you for staying with us on this journey of 5 years!!!! Thankyou Thankyou Thankyou - we are very blessed to be here and having our family together and living life!

HAPPY THANKSGIVING!!!

Sunday, November 23, 2008 3:17 PM CST

Good weekend all the way around. Friday was an SU game, we went out to dinner before and then off to the game. SU is on a win streak although they have a young team so it will be interesting to see how they handle the big games. It was snowing pretty hard coming home and it was a good thing Chris was our driver as usual. Some people obviously didn't realize the roads were slick and one particular guy was first tailgating the guy to our left and then us. Finally when it went to 3 lanes he passed us all on the right. Well needless to say another couple miles up the road we found him in the ditch... police were on the scene already so hopefully no one was hurt, but you just want to ask them what the heck they were thinking!!!!

Saturday Owen went back hunting with Uncle Steve. They didn't see anything. Seems the deer were pretty quiet and snuggling up somewhere with all the snow. Owen made it home in time to go bowling. After bowling we suited up and headed out to play in the snow. We spent a while sledding on the side hill and then started to build a snow fort. The snow started really coming down again and we opted to quit our faces were freezing!

Today we headed off to pictures with Santa and the dogs. It was interesting to say the least! Not sure if the picture they got is any good it will be mailed to us, but I know I didn't get anything. Champ was a little nervous sitting next to Santa!!

We came home, ate some lunch and then picked up Sean and headed to the high school to do some sledding there. The boys had a blast!!!! We built a ramp and spent almost 3 hours hanging out. This is what winter is all about almost makes you like the snow and forget the beaches. Yeah if you believe that one!!!!!

Have a great night!

Wednesday, November 19, 2008 6:57 PM CST

Sorry to leave you hanging, Owen is doing fine. He was back to school on Tuesday, still didn't feel 100%, but he went. He is feeling much better now. I think Jake and Ty might be getting something though. Jake complained of his stomach being off last night and was asleep on the couch by 6, which is where Owen started. He went to school today, said he felt fine. But during after school Karate he had to run to the bathroom and got sick. He said he felt fine after that and he has been acting fine. Tyler seems fine, just his cheeks are rosy red. So I guess it is the watch and see game. I am coming down with a cold myself. I have been feeling it at night for about a week now but am fine all day. Today was the first day I felt crappy all day. So lots of juice and cold meds to try and ward off this from really blooming!

I can't believe Thanksgiving is next week!!! It is going way to fast! We have so much to be thankful for this year. Owen is now 6 months off treatment and things have been going pretty smooth. Our lives seem more normal and we are very thankful for that! I so need to do some Christmas shopping... oh I cringe to even say the words! But I like to be DONE by end of November so I can enjoy December as it seems every weekend has some function we want to go to all month long.

I am attempting to get the christmas card picture done this weekend. Dickmans is doing a pet and children Santa picture this weekend. So 2 dogs and 3 kids, chances of a good picture???? Oh well I will give it a whirl!

Have a good night!

Sunday, November 16, 2008 5:16 PM CST

We had a pretty good weekend, although Owen isn't feeling well today.

Friday night we went to the movies to see Madagasgar 2. It was really good. We were laughing out loud several times! Tyler danced his way out of the theatre at the end!

Saturday Owen got up early and was out the door at 5am with Daddy and Uncle Steve to go deer hunting. Uncle Steve shot a buck and Owen got to experience tracking the deer, he was very excited! Chris said he did great although it is sad to see him struggle walking through the woods but it doesn't seem to bug Owen he was in his glory. Tyler and Jake had bowling (yes Owen played hookie), then groceries and then home to play. Saturday night was my reunion. Kim brought our cousin Jordan over to play while we were out so the boys were loving it. The reunion was fun although a very low turn out. But those of us there had a good time and it was fun catching up. Our class was pretty split on those who started with kids right out of school and had teenagers or kids in college. One girl even has 6 grandkids already!!! Then there are those like me, with young ones at home and we are in the prime of parenthood. We ended up dancing the night away at the end.

Today was a lazy day, we played some basketball in the basement, dinosaurs, baked some cookies and watched a movie. Around 2 Owen said he wasn't feeling well. His stomach was upset and he felt like he was going to get sick. He just ached all over. He isn't running a fever yet, but just feels awful. He is sound asleep on the couch now. We are a little concerned about him, as he has had 4 bloody noses this month. He had 2 in October that we told Dr. Cherrick about, but they don't last long so she wasn't concerned. Now he has had 4 more this month, so that starts to get you nervous. I know it is dryer in the house with the heat on and hopefully it is just his reaction to this. So we'll keep an eye on him and hopefully what every has got him down today will be short lived.

I was going to take all of the boys to the SU game today and then just didn't feel like the treck up the hill in the cold and gave the tickets away. Now I am glad since Owen started to feel sick. Owen starts Play practice tomorrow for the 'Music Man' presentation in February. Last year he got sick right before the play and ended up missing it, so he is really looking forward to this year.

I guess thats it, just hoping Owen feels better!

Have a good night!

Monday, November 10, 2008 8:06 PM CST

Things continue to go well. We had a good weekend. Owen had 3 friends spend the night Friday for his re-birthday. The boys had a good night and believe it or not didn't spend the whole night on the couch playing video games! They actually got out the board game Clue, Owen's microsope and acted out the Hulk game and used the microscope for their analysis. They wanted to take a blood sample from me or one of them to analyze but I had to cut that short. I did that one other time for Owen where I poked myself for a sample, but not ready to do that again!!!

Caleb and Maddie our neighbors over on Saturday for some fun. Sunday Chris and I went to the SU game. Caleb and Maddie came over again for a while, and as we pulled in the driveway we saw Tyler and Jake disappearing down the hill to their house to play. They love living next door to more kids!! This has worked out well beign able to run back and forth between the houses!

Today was parent-teacher conference day. I had Tylers a week ago. I had asked for an earlier meeting due to Tyler have some issues at school. I think that meeting went really well and we have put some reward systems in place to help Tyler and he had gone thru having his TV removed at home to enforce we were all on board to turn things around. So far so good - he has had 7 good days in a row!

Owen is on the honor roll!! He has a 94 in Science, SS- 92, Math-90, Language Arts-90, Reading-90. So we are very proud of him!!! He needs to do just a little better and he can make high honors!!! (not that we are upset with Honor Roll!) He is in the top reading group. He had 99% accuracy of reading ABOVE the 6th grade level. His teacher said he is a joy to have in class and always participates and has ideas. Who would know that this is where he would be with having missed probably 50% of school for how many years???? Great Job Owen!!!

Jake needs some extra help. I knew he would as we can see it at home with his attention span, and just seeing him read and write. I do review his site words with him but he has many more he needs to add and he is still working on ones he should have mastered by now. We need to buckle down and start really re-enforcing his words, counting and just basic concepts so get him to a more stable start. Last time we dug in and worked hard we saw improvement but have not been agressive with this so far this year, so it is time to start. He is still so very much into being the social man and has a hard time concentrating and focusing on the school part of things.

Panda came out Sunday so I rewarded Tyler for his good days at school. I wish I had the camera going when I gave it to him. He stopped and just stared, slowly his mouth dropped open and then he started jumping up and down screaming 'Panda, Panda, Thankyou mommy, Yeah, yeah Panda!' He was so cute!!!!!

This weekend is my 25th class reunion! OMG - are you kidding me! 25years!!! I have NOT been out of school that long because I am NOT that old! LOL Do we ever really want to believe we have aged??

I guess that is it, let the good times keep on rolling...

Tuesday, November 4, 2008 7:51 PM CST

Happy 5th re-birthday Owen!!! Yes 5 years ago today Owen was given the chance to be born again with new bone marrow from Jake. I searched back to the oldest of journal entries to re-live that day, but the oldest entry is November 6th so somehow a few days were lost. I thought I started it before his transplant, but maybe not. Wow how blessed are we - from where we were 5 years ago not knowing what each day would bring to celebrating 5 years of being AML free!!!! Next is the 5 year mark for ALL free!

Halloween went well. The boys had a good time Trick or Treating. We only went about 2 blocks and they were done, their bags were heavy. There was not many kids out and the houses were just giving out handfuls of candy! Now what to do with it all??? I'll be sneaking it out for work! Tyler changed his costume, he told me 'No Panda' for trick or treating and wore an old spiderman costume. He did wear his Panda at school so check out the school parade pictures - he is adorable. Owen traded in his Joker mask for the real makeup and he was scary looking!!!

Last night was the beginning of SU season - yeah!!! Owen went with me and Papa Fred. It's a young team and lots of work to gel together but should be a good season.

Thursday is Mom's Night Out so I am looking forward to being with all the girls again since I missed October. Course I would rather be on the beach in florida again for this month... sorry girls!

Today was flu shots for the boys. Jake was freaking out, he does not like shots! They all had the magic Emla cream on to numb their arms and Jake was so happy - he didn't feel a thing! He wants that ALL the time, for shots and when they take blood!

So life is good and we are enjoying it. They are already checking out the magazines and TV ads for Christmas... oh I don't even want to think about it!

Have a great night!

Thursday, October 30, 2008 9:05 PM CDT

Thank goodness my pediatrician is cautious!!!! I got a call today and the blood cultures show Owen has Strep Pneumonia! The anitbiotic they put him on will work for this so he definately needs to take it - good thing we kept with it. So from freaking out a few days ago thinking the worst when they ordered blood work and cultures I now sit here so thankful that they did!!!!

Owen has to go back to the doc tomorrow to re-check him, since they found out he had the pneumonia and want to make sure it is not settling in his lungs and he truly is looking better. Owen is definately looking and feeling better! We are very happy with how he got over this illness. Generally Owen would freak himself out if he got sick and was so nervous to return to school. This time he was ready to go back. His last fever was tuesday morning at 4:30 and by tuesday afternoon he was asking if he could return to school on wednesday. Wow that is not the ol' Owen, so he is feeling much more confident and back to the Owen we want to see!

Tomorrow I have Jakes Parent Visitation day after I take Owen to the doc. Then over to AJ for Tyler and Owens Halloween parade at 2 and then back to Cayuga Elementary for Jakes Halloween at 2:45!!! At least I am only bouncing back and forth to 2 schools not 3, so that makes it a little easier.

Then after school we will return home to put Owens face makeup on and then off to the rounds of Trick or Treating. We will start at Papa W's and Grandma Lee's, then to Grandma Pats, Grandma Bonnies, and finally to Papa Fred and Grandma Lea's where we will go up and down their road and hit the houses up for treats! The boys are excited for Halloween as always. They love to dress up. Owen is 'The Joker' from the new Batman movie, yes he has gone to the dark side. Tyler is Kung Fu Panda and Jake is Optimus Prime the transformer.

Sounds like a long fun filled day! Hope you all have a Happy Halloween too!!!

Tuesday, October 28, 2008 8:57 PM CDT

I am smiling, I am happy again!

Dr. Cherrick confirmed that he has nothing more than a virus of some sort. The pediatrician was being overly cautious due to Owen being who is is. They have not dealt with many cancer patients much less one who has relapsed and gone through a second treatment and wanted to make sure they were doing everything to be pro-active. She may have added to my stress by asking for the X-ray. But due to Owen's past in starting small with a fever and hiding pneumonia she wanted to make sure nothing was hiding. She feels we could even stop the anitbiotic. However for my own sanity we will stay on the antibiotic!!!!

So I am feeling so much better. I had gotten myself into such a spiral fearing the worst, convincing myself there was more to the pediatrician being cautious, that she was 'not saying something'. Oh when will we ever relax and not fear the worst??? Will I ever? Seems as much as I say we are loving the normal life, fear is only an inch away waiting to surface and make us all crazy!

When we first got there Dr. Cherrick said she still needed blood work as she needed a slide and since his blood work was done at an outside source she would still need a sample, and she needed to talk to me about something. I think she saw the panic in my face at that statement, and immediately reacted 'It IS nothing bad!'

Turns out she just wanted to ask us to participate in a study. Many cancer patients develop other health issues after treatment (heart, other cancers etc.) and Owen met the criteria to be a 'control' subject as he had the same cancer, same treatment, same age etc. but had not developed the other issues. So they use his medical history and blood work to use as a study to determine what if anything can be detected to possibly detect these other issues prior to them developing. Of course I agreed, anything we can do in the studies for cancer and help I am all for it. What this meant is Owen needed more than a finger poke, he had to give 3 tubes of blood! Well that sent Owen into a panic, he just got poked yesterday, he didn't want to do it again. Missy was doing the poke though and she is awesome, so it was easy in and done. Owen relaxed and all was well again. I may need to do a cheek swab in the future, they will mail it to me if they decide to do it. The study is being conducted by an outside agency they are just contacting patients on 5c for help that meet the criteria.

Owen has been fever free since 4:30am today. So looks like he is on the mend. He even acted like himself today. He was back to joking around, CHEATED at scrabble with Grandma ( a sure sign he is back) and was full of it with Dr. Cherrick. She commented he didn't look like the normal sick Owen. I said you should have seen him yesterday! He said he was running on adrenaline as he had not gone back to sleep since waking with the fever at 4:30, he was definately wound right up!

So yes I am breathing again and feeling so much better. I need to remind myself of this and try not to let the panic set in if things go a little 'different' than what I expect. I did not like being in panic mode and feeling the way I did. I felt defeated and all my strength drained right out of me. How could we do it all again??? Now I can relax and remember to listen to my own advice and know precautions may be taken but it doesn't have to mean anything. Yeah, okay easier said than done, but hopefully I won't be put to the test on it!

Monday, October 27, 2008 5:07 PM CDT

Today was not a good day at all. I need to talk through the day to regain my sanity, this is my space to retalk things through! I see my post from this morning did not stay so I will give you the short of it:

Saturday night Owen was not feeling well. He had the chills and his tooth was hurting. I thought he might be getting his molars. We were at the Deckers Halloween party. We came home and he had a fever of 102.8. Sunday he woke up and other than a headache felt fine, no fever. Then this morning around 1am he spiked a fever again of 102.9 I headed to work this morning figuring I would see how he felt when he woke up. If he was ok I wouldn't go to the pediatrician since we were going to Dr. Cherrick tomorrow. He woke up around 10 freezing - his fever was 103.8!!!

I called 5C and we were ok to go right to the pediatrician. After examing Owen the Dr. wanted to put him on an antibiotic for a suspected sinus infection. BUT she wanted to send him to the lab for Blood cultures and a CBC! She said it was just due to Owen being who he was and wanted to be cautious. My mind went into alert! He has been sick before and no blood work has been ordered!!! I couldn't flip in front of Owen. I have been telling him for how long that he can get sick just like other kids, so why was I flipping out??? I just had that sick feeling in my stomach. I told her we were seeing Dr. Cherrick tomorrow and would be having blood work, but she didn't want to wait, she would send Dr. Cherrick the results and he wouldn't have to have blood work at his appointment tomorrow. Alert, Alert that is all this registered to me!

I returned home with Owen, I was a wreck on the inside and couldn't even think about returning to work. I cried like crazy in the other room thinking No No No! The call came from the doctor and his WBC was 22 which is double normal and about triple where Owen has been at. His differential was 'off' and suspicious. What does that mean?? I couldn't even ask, I was loosing it. She wanted to send us per Dr. Cherrick for a chest xray. Even though he sounded clear, they wanted to rule out pneumonia brewing as he is still at risk for this. Off to Xray. We had to wait for the results and the call from the doctor before leaving. The xray looked good, no pneumonia. I had finally collected my wits and asked questions. What does the high WBC mean? What does the differential mean? Is 'leukemia' even being discussed???? She assured me there was NO abnormal cells in his blood work. They felt both the WBC and differential just indicated an infection of some sort. I am breathing again. She said Dr. Cherrick would review it all with me tomorrow but just to watch Owen tonight for abnormally high fever, and if I had any concerns to go to the ER. She didn't care if he ate, but he HAD to drink.

So here I sit, still not sure of what I am feeling. I still keep asking myself 'Why the blood work today?' It just seemed this was important and going to the doctor for blood work tomorrow was not good enough. What alerted her to need it today? Am I over reacting? Owen remained calm all day, other than feeling like crap and just wanting to stay home and curl up. Why was he so calm and it was me freaking out???? I am trying to think positive. It is all just a precaution, Dr. Weaver has seen Owen many times during treatment and was just taking the extra steps, which I should be happy with! But I still am just so nervous. I am trying to stay busy and just not think, I can not EVEN think about the alternative! Sometimes it pays off, I cleaned out 3 bathroom cabinets while waiting for the doctors office today! So I guess that is good :-)

So breathe, relax, tomorrow is another day. Think Positive. What is the motto- 'One day at a time!' I need to listen to my own advice......

Friday, October 17, 2008 6:46 PM CDT

OK let me try again to post a link to the Disney Photos they take at the parks.... see link below.

Now I am really crying... it is cold here!!! At least we came home to warm weather but am I feeling the drop in temp the last few days. I long for the heat and sun of Florida. Makes you wonder why I live in Central NY doesn't it????

We have slipped back into the routine of life again here. Seems like we have been home more than 4 days, vacation just seems to slip away so fast with the rat race of normal life. The boys have all settled back into school. Owen had to go in early one day and work through a study hall to catch him up on a couple of quizzes and math concepts done while we were away. Tyler had a bit of a rough week. Not behaving well and a few accidents, I sure hope this will not become habit!!! He KNOWS he is in trouble as soon as he gets home, but the next day he is right back at refusing to do work in school. I am struggling with how to reach him and find out what it is. Not sure if he is not adjusting well to the new setting, or is just being defiant. Jake is thrilled to be back to school and hanging with his buddies.

The boys will go back to bowling on Saturday, which they are excited to get back too. Other wise we hope for a quiet weekend. Our house project - new windows, doors, and siding is almost done and looks awesome!!! We are so happy we did this and hopefully our fuel bills will show a big change! Our internet is finally working again. The Hughes people were back again today and I hope we are finally stable... but seems like everytime they come out we are good for a day or two and then the trouble begins again. The did an upgrade of the actual system and satelitte dish so that better work!

I am starting with a cold I am afraid. I feel fine all day but at night my throat gets sore and I feel it... but hopefully I will get rid of it before it truly sets in. Tyler did end up going to the Doctors on monday and is on an antibiotic. This is his first one since March so he did have a good run. Although his nose did run during that time period he was able to get over it with out antibiotics, but not this time. I imagine from now until next march we will have several doses. Owen feels great, he looks great and he is feeling more secure about himself. He told me he even played touch football on the playground this week during lunch! He said it felt great to be normal! He does not go back to the doctor until October 28th.

I guess thats it for now, I like these nothing to report journals!

Thanks for checking on us!!!

Friday, October 17, 2008 6:46 PM CDT

Sunday, October 12, 2008 9:03 PM CDT

I fixed the Disney Photo link below, I guess I had it going to the signin page... sorry!

We are home.... the tears are falling... I was not ready to return!!!

Rewind back to Florida... we went back to Epcot on Tuesday to revisit some of the favorite rides, then off to dinner at MGM before the show of Fantasmic. The kids loved the show, it is really amazing with all the lights, fireworks, huge animated snakes and dragons plus the favorite characters throughout it. Tyler wasn't sure at first, he doesn't like the loud noises. He put his ear muffs on kept peaking up from a crouch... soon enough he was on the seat next to me and full of smiles!

Wednesday we packed up, got our rental car and headed off to Universal for the day. Definately should have done 2 days there. We had to do both parks in speed mode because it closes early at 6. So we hit some of the favorite rides, Jaws, Shrek, Dr. Suess land... where we ran into the Cat in the Hat and Grinch which Tyler was thrilled over!!! Of course we hit spiderman!!! And also went into meet him too! Owen and I did the Hulk. What an awesome ride! Even I was a tad nervous thinking of being shot out of the tunnel into many corkscrew turns but it was absolutley fantastic. Wish we could have done that a few times! We missed Barney which I was really sad about, his last show was at 5 and we were on the other side of Universal at 4:40 when we got out of Shrek. I know Tyler doesn't know, but he may even have out grown Barney when we return to Disney again. We did ET though which was one Jake really wanted to do.

We were on the road for Indian Rocks by 7. We got to our cottage after it was dark but was thrilled with it immediately. If was an 3 bedroom, 2 batch upstairs in a cottage. There is 8 little cottages in a little circle. A pool in the middle of them all. The boys went down swimming right away. Then we took a walk down to the ocean which was only a hop, skip and jump away!!

First thing in the morning we had to go see the ocean right away. We were out swimming in no time and loving our new little vacation spot. When it got really hot out we were back at our cottage and enjoying the pool again. And so our life was this for the next few days. Just heavenly and so relaxing!!! I think we neede a week of doing nothing but hanging at the beach! Friday the waves were awesome so we got to do some bodysurfing. It was great, and we were getting quite good by the end of the day of 'catching' the wave! We went out to dinner with my friend Lori and Dave and their daughter Natasha friday night. The boys loved Natasha she was so cute!!! Jake was especially taken in by her! Owen ended up going back with them to spend the night.

Saturday we headed to their beach house for a day in the pool. The boys spent most of the day out on the dock fishing. Jake was really casting quite well even though he had a pole with a plastic fish on the end. We weren't quite ready to give him a hook, he wasn't quite getting that he could hurt some one as he just let off a cast without looking around first! Tyler enjoyed hanging out and playing some bowling games with me. Then he discovered Natasha's video's... he has been 2 weeks with no TV or videos except the little bit we watched at night before crashing. So he was quite excited! He had been asking since Friday night to go to Ty-Ty's house, so he was ready to go home! The video's at least let him relax and have some alone time that I think he was missing.

Owen caught a conch - see picture page! We thought he was stuck on something but no somehow he hooked a conch! They are really big and really cool looking! After dinner we had to admit it was time to go back to the cottage... 3am would come way too soon to get ready to hit the road for the airport by 4. Tyler woke right up when he heard us puttering around and 'helped' get us packed! He was beaming ear to ear, going to Ty-Ty's house! Yep time to return to his regular routine I think.

I might be taking him to the docs tomorrow, as his nose ran the entire vacation without slowing at all, so that is 14 days, and the docs require 10 before they will give him an antibiotic anymore. Ah yes, back to normal and hitting the doc office. Although we did have a very healthy vacation. Jakes fever the first night and Owen having a little sore throat. Other than Owen being Achy after a day of walking he did fine!

For as much of a dark cloud I have hanging over me we had no travel issues... until.... We arrived in Philly at 8:30 and grabbed some breakfast. Then we caught the shuttle over to our other terminal. The boys worked on some homework waiting for our plane (we had 3 hours all together) and yes they are still working on their homework. I am a softy and when the tears came that they did enough for a day I caved at Disney. So anyways at 1am (our plane leaves at 11:30) Owen realizes he left his DS game back at TGIF where we ate breakfast. I called them and sure enough they had it. The attendant who would load the plane thought we should have time. So Owen and I were off and running. We took the shuttle back, got the bag, back on the shuttle, he took forever to leave, waited until there wasn't an inch of room on the shuttle before pulling out. My nerves were shot. Chris called the plane was all loaded except us and they were threatening to close the door. I told him to beg them, the bus was moving now and we would be there in 2 minutes!! We ran back down the hall and made it!!! I told Owen next time... the game back will be lost... can't go risking that again!!!

So yeah, back to where I started, we are home. We had a great vacation, loved having both disney and down time at the ocean. Definately the way to go. I have unpacked us, got some groceries, paid the bills, and now tomorrow, my last vacation day can be spent relaxing once again before returning to the rat race of normal life and work. Oh how permanent vacation would be so nice......

Monday, October 6, 2008 8:55 PM CDT

Life is good and we are having so much fun. My thought was that we had nine days at disney and that would allow us to enjoy and see it at a very relaxing pace - yeah ok time to wake up! My boys sleep in everyday so I guess that is relaxing. We don't leave the room until 11am. So then we hit the parks until dinner time, eat dinner and back to the room and they are sound asleep early. Tyler is asleep by 8am, as soon as his head hits the pillow!

I think I last left you with a morning at Magic - we ate lunch with Pooh, Tigger, Eyeore and Piglet. Tyler loved it and they got to march in the parade around the restaurant. We headed back to the hotel and spent the rest of the afternoon at the pool. That night we went back to Epcot. We went on Test Track 3 times, this was a favorite ride of a high speed race car! Even my Jake who doesn't usually like any scary rides loved it! We even did Mission space, I kept saying no - people have died on that ride... and so we took it slow and did the mild version of ride... yep I'm hooked... go back and do the full version! I am just love rides!

Friday we spent at animal kingdom. I think this is my favorite park! I love the animals! Jake loved dinosaur land, but we did not dig for bones, it was so hot out that we tried to spend as much time in the wooded sections or on the rides to stay cool. The boys had no interest in hanging on the playground area. The Yeti ride was a favorite for Owen, Tyler and me. We had to do that a few times! Jake is becomming totally adventurous and even went on the river rapid ride! The Safari was a favorite for all! The parade was really neat the people were dressed as animals or in animal type vehicles, so different than the other parades.

Saturday we had breakfast at our hotel with Goofy, Donald Duck and Minny mouse. Tyler flew into Googy's arms, he loves Goofy, I think because they are both so silly! It is just so magical to watch his eyes light up and just believe in the world of Disney! Then it was off to MGM, this is probably our least favorite park. We did enjoy the Indiana Jones Show and the Beauty and the Beast show was awesome. Owen and I took on the Rock and Roll Rollercoaster which was great! Then Owen had to take on his fear and retry the Tower of Terror! Last time we were here for his make a wish he was terrified, so now that he considers himself fearless he wanted to prove it. Well we had the chance to be front row and he swapped wasn't quite ready for that! He did better but was feeling a little green after....

Owen and Chris headed for the hotel early, Owen was complaining of a sore throat and it was so hot that day. He did end up falling asleep and slept for a few hours. Jake, Tyler and I hung around to watch the parade. It was block party style so lots of dancing and full of Toy Story and Monster Inc characters so that was great. We then went to the playhouse disney show (good thing Owen wasn't with us he would of died in embarassment! ha ha) Tyler and Jake loved it. Although I realize my kids are getting big now, there are many new shows and I did NOT know the characters or songs! Like who the heck is Handy Manny or something like that!

Sunday was back to Magic to hit the sections we had not gone to yet, Frontier land and adventureland. Then back to Tomorrow Land and guess what... we went on the Buzz Lightyear like 10 more times!!! Oh well it is a favorite. We also like the Carousel of Progress, I think all the boys can sing the "Its a great big beautiul tomorrow..... " We went to the Wilderness Lodge for dinner. It was a cowboy fashion dinner and a fun waitress. The boys got to ride around on wooden Ponies and join in on many songs!

Today was a hot one... and we were off to Typhoon Lagoon water park. It was cool, but honestly I think SeaBreeze has some better tube slides! The Wave Pool is awesome!! It has waves that you can literally SURF on! If you book morning time before the park open they allow you to rent boards to surf on! The ewaves would carry you 30-40 feet when you are in the shallow part! Jake went wild and loved it. Check out the pictures on the link below - it shows the wave creaping up on Jake and me until - Kaboom we are engulfed! Tyler wasn't too thrilled with being pulled under and thrown so he hung need the very end of the pool. Owen and Chris went out to attempt to catch the wave while swimming in the deep section. Tyler ended up sitting down on the edge of where the wave finished at and this was not good. Even as the very edge of the wave area the wave crashes in. Standing he did fine, but sitting he had no control and it flipped him right over and he scrapped his elbow on the floor. It was bleeding pretty good so we were off to first aid. He handled it well though. I took a turn out on the deep end of the surf wave and let me tell you it is exhausting!!! But alot of fun. We headed back just as the thunderstorm rolled in.

We went to Dinner at Don Shula's tonight at the Dolphin Resort. It was a delicious dinner! We had Lobster Mashed Potatoes and Crab meat macaroni and cheese along with our dinners, mmm mmm it was soooo good! Not a place we can go often though, yeah once every ten years might fit the budget!

Disney is coming to a close, tomorrow is our last day and night. We go to the Fantasmic show at MGM tomorrow night. Wednesday we are going to Universal, and then off to Indian Rocks (outside of tampa).

So are good days continue, everyone remains healthy except for Tylers nose.... I was hoping the sun would dry it up but so far it hasn't stopped! Hear it is quite cold at home and we are so loving that we are hot and sweaty here!!!

Our friend John (see link below) is having some rough days and could use some support. He is fighting a lung infection right now and just finished having surgery. Unfortunately our good times does not stop the fact that Cancer continues to wreck havoc elsewhere....

Thursday, October 2, 2008 7:35 AM CDT

Just a quick hello to say we are having a great time!!! Tyler is beyond excitement and we are running into lots of characters! He still gets so excited everytime Mickey is seen anywhere!

The resort is awesome. We are planning on spending a little afternoon time here today and swim. The waterslide is huge from this sunken boat mast across the walkway to the pool! There is a sand bottom pool as well which Jake loves - great for making sand castles. Then there is a smaller water slide where Tyler stays non-stop.

Our first day we spent at Epcot. Mostly in the Seas with Nemo and friends. We had a late dinner at the Wilderness lodge that night which was alot of good ol' country fun with the Hoop Dee Doo Review. The boys loved the singin and dancin!

Jake had been 'quiet' all morning which we thought was strange for him even though we did get them out of bed at 4am. By 11am he was running a fever -102!! He was a trooper though and did not want to stop. I did bring medicine!! We did come back to the room after epcot to get a nap in for him. He slept 3 hours and then felt a little better. He woke up wednesday morning back to Jake, so just a little 24 hour bug!

Wednesday was Magic Kingdom and of course the trip to Mickeys House!! Ty and Jake loved the Buzz lightyear ride and I think we went on it 10 times! It is hard for them to realize this is not Seabreeze and there are soooo many rides. But hey if they are happy we are happy. The parks are very quiet, hardly any lines at all which is great! On some of the bigger rides there is a 20-30 minute wait, but we have a special pass due to Tyler have Down Syndrome that allows us to use the Fast Pass Line and by-pass. Guess they KNOW the patience Tyler has! LOL We went to a Luau for dinner tonight and it was great! Lots of Hawaiin dances and it finished with a spectacular Fire Dance!!! We watched the fireworks at Epcot, and then off for a late night swim before bed!

Below in the links is a website that you can view any pictures the Disney photographers take as we go around the park. Keep checking it - more will get added as we continue our journey.

Today I think we will go back to Magic - we have Lunch with Pooh. And still so much to do at Magic (we were at Buzz to long :-) ) Then hoping to hang at the pool for a bit and then maybe downtown Disney later tonight. Who knows!! That is what I keep explaining to Owen, who gets frustrated when our plans change. We do NOT have concrete plans, we may start out thinking this is what we will do, but as the day goes on and we decide to change, thats OK!!! He is having a great time - but is horrified of some of the kiddie rides he has to do (Its a small world) of well it is good for him! We are getting plenty of the big stuff too!

Well my boys are still snoring away at 9am. Guess I will go for a walk on the beach - they need their rest!!!

Sunday, September 28, 2008 6:22 PM CDT

Things are going really great. Owen's check up was fine, his counts are good. He does have rashes coming out, on his face, his legs etc. They itch for a few days and then are gone. I asked Dr. Cherrick, and she said that once off-treatment the kids do see to sprout rashes, but by the time you look into them they are gone. So unless one really gives him trouble or doesn't seem to go away we have nothing to fear. We thought his face might be puberty starting?? But no, since Owen had testicular radiation he is going to need help reaching puberty. Once we see some significant hair growth he will probably go on some hormones to boost him, as he will not reach it naturally on his own. That is so sad to hear, the first of many things I am sure that we will start seeing to hear how how the drugs and radiation have done damage and things he just will face differently than other children. Even off treatment the shadow of cancer will remain forever...

Today was the Down Syndrome Buddy Walk in Syracuse. The 10th one!!! Tyler has been to them all!! He was born and only a couple months old for the first one. He absolutely loves his walk. Normally rain would send Tyler in a downward spiral, and no way would he be caught outside. Today it was not a problem, he carried his umbrella and was happy as can be! We really lucked out and the rain was just little sprinkles here and there but not the down pour they predicted. Papa Fred, Grandma Lea, Grandma Pat, Kim, Missy and Mackenzie all came to walk. After the walk we spent time playing the many carnival type games setup. They had alot of characters walking around this year.. Barney, Tweety, Scooby Doo, PowerRangers, Mickey and Minney, SpongeBob, Santa, and just too many to list, it was non stop excitement for Tyler. He loves his characters!!!

We are ready to roll for Disney!! Bags are packed, just the last minute things to go in. The excitement is just bursting at the seams here. I think I might be 2nd compared to Tyler! I will try to update and post some pics along the way while we are in Disney but no promises!!! I am all about relaxing and having fun! Just have to hope the colds that are brewing in the kids go away when we hit the sun! Owen was very stuffy last night but did ok today. Tyler's nose is starting and he is very congested. Jake got bit by a beetle he said at Emma's birthday party on Saturday and his ear is very swollen and red. Nothing bad in any of them, but we certainly don't want any of them to get any worse!

Tomorrow we are going to Chili's for Dinner. It is Cancer night out... all proceeds go to St. Judes for research. Just perfect, no cooking my last night home! Can never get enough of eating out LOL!

Sure hope we can sleep the next couple of nights!!! We will be on the road at 4am on Tuesday for a 6:30 flight in Rochester. Thanks for checking on us!!

Thankyou to those helping us while we are gone, staying at the house and the dogs, birds and spidey!! Couldn't do it without you!

Thursday, September 18, 2008 8:03 PM CDT

No we have not disappeared off the face of the earth! Things are going well with everything but the computer!!! It has been on the fritz again. I did finally get a connection tonight, but they are sending a technician back out on Monday as it has just been horrible. We rarely are able to get on.

Seems as we head into the fall the changing of seasons cold have come upon us!!! Jake is stuffy as can be, but still feels ok. Tylers nose is started to run, no surprise there! Owen is starting with his aches and pains again. He ended up at the nurses office today and came home, he was in tears the pain was so much. Oh I hope we don't head down this road again. I think part is real pain, but part is probably getting overwelmed in school. 6th grade is definately a whole new ballgame. But we are staying strict and all work has to be done, sore or not...

Owen has his monthly doctor appointment this coming monday. Tyler just had his blood work done to check his thyroid level and also a routine check for celiac disease. So hopefully all good news will result from these tests!

School is going pretty well for everyone, but they are starting to see some behavior attitudes from Tyler. We hope to nip these in the bud quick and do not want this to become a norm for him. Jakes open house was this past week and so far so good for him. He is doing his reading nightly and practicing site words so hopefully he will stay on top of things this year. I think he is starting to settle in. Time will tell...

Looks like this weekend the pool will be covered. The boys did swim last weekend but both Tyler and Jake didn't stay in long, saying it was too cold. So I guess we got as much as we can. At least last week the days were hot, but this week it is cool and there is no chance of reviving it.

Nikki, our Golden Retriever has an infection in her foot. She most likely got something stuck in it, with all the consturction stuff going on here. So she is on 2 antibiotics and I have to soak here foot 3-4 times a day alternating epsom salts and peroxide.

Nothing much else to report, life is good!

Thursday, September 11, 2008 5:37 AM CDT

Please take a moment today to remember 9/11 and all the families that lost their loved ones. Hard to believe that was 7 years ago!!!!

Things continue to roll along and are great. Lets see what did the last week bring... Mom's night out was great, we had a couple new mom's and a friend of a mom. We welcome the new mom's although it stinks that there has to be any 'new' mom's, that means more children are now going through the world of cancer. That is something I wish never had to happen.

Friday night was Jakes Welcome back to School picnic. Owen brought his friend Sam who would spend the night and Jake and Tyler were off and running to the play ground as soon as the car doors were opened! I had to convince Jake at the end that it really was the end and we needed to go. His best buddy Thomas was still there as his mom was on clean up committee so needless to say there were some tears on the way to the car.

Saturday started the first day of bowling league. I brought Owen in and as we were sitting there, Pam suggested I check if there were any openings on the PeeWee league. So sure enough there was a team with only 1 child, so both Ty and Jake are now bowling too!!! They were very excited to be bowling. Tyler was jumping in the air with excitement every time he threw the ball, and lots of high fives. Jake even got a strike. They do have the bumpers! Might as well have everyone involved - I have to come every week for Owen, so this should be fun. My only concern is that it goes until April!!! Yikes, will they want to stay in the league for that long??? Oh we will take it one Saturday at a time...

Tuesday was Open House night for Tyler and Jake. First up was Tyler. I had a great talk with his teacher (his 'real' teacher is on maturnity leave until the 22nd so I will need to catch up with her too when she returns). She see's alot of potential in Tyler and also his mischiveous side! He is slowly warming up. He started going to his mainstream class for 4th grade on wednesday which is Miss Heath, Owen's 4th grade teacher so that is great that I already have a relationship with her. His teacher is very thankful for my 'tips' on Tyler that we have communicated back and forth via daily communication sheets. He was coming in each morning and wanting to lay down, as he was in shy mode. I told her - do not let Tyler do anything you don't want to be the norm! If you let him do it today, he will think he can always do it!!! So the laying down in the morning was stopped right away and has been a blessing, he is coming in and getting to work now.

Next off to Owen's class. 6th grade is definately going to be a whole new world for Owen. These teachers are ready and prepping the kids for the rest of their school years. They will be expected to do a lot of writing, and alot of homework!!! The other day Owen was complaining of his hand cramping and being tired, could I finish writing his notes? I did not, and he did it. I was discussing this with his Science teacher after and 'absolutely not' would that be excepted, it would be returned and Owen would re-do it!!! Welcome to the real world Owen!!! She loves Owen and is very pleased with his participation in class, she sayid he is wonderful to work with. I didn't get a chance to talk with his other 3 teachers as there were many parents and everyone wanted to talk with someone. I will be touching base with all of them I am sure!

Wednesday Owen had Altar Boy training. He has decided he wants to do this. He will only have to serve once or twice a month. He thinks it is going to be very interesting! I am so glad he is getting involved in things this year. I asked him how gym was going for him, as he always had problems in gym due to not being strong enough to do alot of it. He said it was going much better this year, EVERYTHING was going better this year!!!! Yippee!!!

This Friday is Owen and Tylers Welcome back to School picnic. I am starting to get things ready and organized for Disney - 3 weeks away!!! We are caught in a catch 22, I need to get some fall/winter clothes out, but can not put summer away. So I decided I would start the suitcases. I usually do better packing in panic mode and just getting it down. Packing over 3 weeks I will probably throw everything in there, including the kitchen sink!!! LOL

So busy times but all good!!!! Thankyou for checking in on us!

Wednesday, September 3, 2008 7:30 PM CDT

Did you think we disappeared off the face of the earth??? We have actually had computer issues. The satellite dish had to be moved for the siding and after they re-attached it we had no internet! So finally today we are back up and going, it is still quirky so I think they still need to do something but we'll see how it goes.

Life has been going great. Chris, Owen and I went to Toby Keith at the state fair thursday night and it was awesome!!! This was Owen's first concert and he loved it! He was singing his heart out and dancing, we just had so much fun!

The weekend was filled with playing with the neighbors, swimming and just enjoying the outdoors. Chris and I had a wedding on Sunday. Yes we are getting old, it was a wedding for our friends daughters! The wedding was beautiful, they got married in the woods in Canastota. We took a grey hound bus from the reception to where the wedding was and then returned on the bus for the reception. Alot of people I use to work with at Red Star were there so it was great catching up and enjoying the night.

Tuesday Owen went to therapy and is actually released unless we decide to start him up again. He gave Owen a list of things for Owen to remember and refer too... like... he CAN get sick just like all other kids and it is ok, Jake is only 6 and can only bother him if Owen lets him, there will be challenges in school but he can face them, God will challenge him but god does love him, that he has beaten cancer twice and he can face any of lifes challenges, that he is in control of his life and is writing an amazing story by living it! I think these are great points and Owen needs to remeber these and refer to them often, especially when he gets down!!!!! Thankyou Darren for being a wonderful role model for Owen and being someone Owen felt comfortable and safe with. You have been an amazing friend for him!

Today was the first day back to school, yeah!!!! All my boys were on the same bus. Tyler is at AJ smith this year with Owen and Jake is still at the elementary school. Tyler was very excited to ride the BIG bus with his brothers. Owen was so good, took him right back and sat with him. He said he tried to introduce Tyler to his friends but Ty was too interested in watching out the window and loving the big bus. Owen walked Ty to his classroom, and later came and got him to ride home with him with the Walawenders. What an awesome brother!!! Tyler had a quiet/ shy day, but I expect that for a bit. He has been with the same kids and teachers for 4 years so this was a big move for him. I told them whatever they do don't let Tyler 'get away' with anything during his warm up time, or he will remember that they let him do these things!!!!

Jake loved being back with all of his friends. School was awesome!!! Owen is thrilled that he gets a locker this year. I will be terrified to open that at open house, considering how his desk use to look! LOL.

Tomorrow is Mom's night out at the Retreat in Liverpool. I am excited to return as I have not been out with the girls all summer.

Friday is Jakes Welcome Back to School picnic. So lots of things going on the next few days. All good things!!

Have a great week!

Wednesday, August 27, 2008 5:31 AM CDT

My fears of August 26th have passed... Owen is doing great. His WBC is 7.7 and platelets are 286 so he he looking just fine! He still has his cough and the doc wants him to start his puffer again - she is hearing some crackle. His cough had almost disappeared and then he started coughing a little more monday night and tuesday he coughed alot during the day. As far as Disney - we need to bring no note or anything for him - he is going as a 'normal' child!!! We went up to 7H after his appointment for a visit. The rumor mill told us that his wife Brooke was working... Sure enough Brooke was on along with Jen another absolute favorite. Owen was in his glory. I took the boys to Chili's last night for dinner for a celebration of having a good August 26th!

Speaking of Disney. I am trying to plan out our Dining plan. My head is swimming. I do not know any of the resort dinner places and am trying to select where to eat, which character dinners to do, which dinner shows etc. So if anyone has experience with these Please leave me a message in the guestbook or call me. I have to get these booked! They recommend booking some of these 180 days ahead - seeing how we booked this trip 30 days ahead we are already behind!

Thursday Owen and I are going to the fair in the afternoon, and Chris will meet us over there for the Toby Keith Concert. Owen missed it last year (or the year before, they are all blending together now!) due to getting sick, so this year we are making it!!!

Have a great week!!

Sunday, August 24, 2008 6:28 AM CDT

Another week has gone by and things are great. The boys have finished religion, Jake is very sad that it is a whole year before he goes back because he might not see his friend Kyle! I wanted to share Owens 'Creed' he made during class.

I Owen, believe in
Thomas because he's always trying to work.

God because he helped me get through cancer

Aunt Anna because shes helping me believe in God again.

Mom because she's helping get my life back

Tyler because he's learning to communicate better

me because I'm trying to be normal

Goes to show you how much he does think about all that he has been through. There is a lot still going on in that little head. I bought the Hannah Montana 'Best of Both Worlds' concert yesterday. We had tried to get tickets for this but at 10:01 all tickets were sold out - mostly to the scalpers!!! Ended up being a blizzard that day so we would not have been able to make it any way... But one of her songs says "Life is what you make it, so lets make it ROCK" I looked at Owen, and said do you hear Hannah? LIFES WHAT YOU MAKE IT. I said remember that and Live for today honey. Don't worry about tomorrow. Owen had a little melt down a few days ago, and when ever he gets upset about 1 thing - he becomes upset about 100 and starts worrying about 'what if my cancer comes back, what if .... ' so we are working on 'the moment' thoughts with him.

Jake is on the injured list. He was wrestling with Papa and got his toe nail stuck on his belt. Well it is hanging by a thread. We can not take it off he won't let us, but it is still pretty raw underneath. So he has been limping around the last several days with only one shoe on, he can't possibly wear the the other even with a bandaid!!!

Yesterday we had Mackenzies birthday party at Chuck-E-Cheese. That was a total hit to have a party there. Ty and Jake loved it! Owen missed it as he had guitar lessons. It was a good thing though, he had been up until 2am the night before with his friend Dan spending the night so he went back to Grandma's after lessons and took a much needed nap!

We came home and headed to our neighbors for a cookout. There was lots of kids and they didn't stop running and playing all day! We came over to our house for a mid-afternoon swim for the kids and then they were back to running and playing again, late into the night when the smore's came out! The big boys played horse shoes all day. It was such a beautiful day and very relaxing and alot of laughs. BTW, Jake ran all day on his bad toe all day and didn't think about it once! He did get another wound, when he drove too close to a tree and got a cut on his chin! I think he is one big accident!

Today we are having another cookout here at our house with Papa Fred and Grandma Lea, Papa W and Grandma Lee. Trying to get in the last of the BBQ's in before the snow flys! Gosh that sounds horrible, I hope it is quite awhile before that happens!

Disney is official! We are leaving September 30th- October 8th at disney. The night of the 8th - early the 12th at my friend Lori's in tampa. We are so excited it is really happening! I know I am pulling the kids from school... but Disney is so nice and quiet in October, that is when Owen had his Make-A-Wish trip. We figure with as much disruption and craziness that these kids have had with school the last few years that yanking them one last time for 2 weeks is nothing compared to other years! We have already for-warned Owen that he will have work to do. Hopefully he will work hard the weekend before we go and get alot of it done!

Owen has his next doc appointment on Tuesday August 26th. This was the date he was diagnosed on - 5YEARS AGO! Wow, I can't believe it! We take this as a good sign. Although he did relapse in '06 with the ALL, it has been 5 years since we found out about the AML, and thankfully that has not reared its ugly head again. We look at the beautiful boy he has blossomed into, but know how much was taken from him in the last 5 years. He was just a mere 6 years old and had the weight of the world on his shoulders. It is weird but I am nervous about his doc appt being on the 26th, its like that was a BAD day, and I don't want it to be a BAD day again. What if it is a sign that this is his appt, and I will again here the news that ripped my heart apart 5 Years ago??? I know it is superstitious and it is an Omen to go this day and receive GOOD news that he is doing just fine!

The Nucor Blood Drive is Tuesday. PLEASE if you can donate call me at 258-4205. Walk-Ins are welcome if you are unsure of a time. It is from 9am-2pm. Blood is at a very critical low right now, and signups for this day are not very good right now!!!

I will check in again on Tuesday to let you know all is well, and my fears for the 26th were nothing!!!!

Thankyou for continuing to follow our family!!!

Monday, August 18, 2008 5:51 AM CDT

We continue to roll along and enjoy life. Jake and Owen had religion all week. Jake was very nervous going the first day and was crying on theway saying he didn't want to go. I carried him in and he was glued to my leg. Finally I pried myself out of his grip and left him. Just as I knew, he was beaming when I got home about how much he loved it!!! Needless to say the rest of the week went very easily!

Tyler enjoys being the only one and having Kim all to himself all morning. He LOVES his Kim!

Owen had a birthday party tuesday night for his cousin Ben. He had a blast. They slept outside in the tent and Owen made it all night. He has tried a couple times to sleep out in a tent as his friends and always ends up coming home. Perhaps Camp good days has helped or maybe because there was several kids, who knows.

Owen went bull head fishing with Uncle Steve Thursday night. They caught a few. Owen caught a HUGE sucker fish. He was so proud he was able to haul it in all by himself.

Owen still has his cough. Some mornings are worse than others but he is getting through it.

This week is another week of religion for Owen and Jake. Our house is finally being started!! We are getting siding and windows. We currently have cedar siding and Chris is done staining. It is alot of work and dangling on the end of a ladder to reach the peaks is no longer in his vocabulary!!! So we are very excited and looking forward to hopefully lower heating this winter - I had to shrink wrap our windows the last few years they have gotten so bad.

I am also booking the disney trip today!!! I have done tons of research this last week and have finally gotten to where we know what we want. Just need to go through it with a travel agent to make sure I have all my ducks in a row. Looks like we are going Sept 30-Oct 12 (that includes some time in Tampa). Tyler is beside himself knowing we are going to see Mickey!!! Hope he realizes it is still not going to happen for a while! We had hoped to go mid-october, but none of the resorts we wanted were available. We decided to change the dates and do this trip right. This is our family celebration trip. We have been through alot and have not gone on vacation as a Family ever!! Except mini weekend get-a-ways or me and the boys going off. Owen had his make-a-wish but that was just him. So this should be interesting! Hence our reason to do this right and do it BIG. We are staying right on Disney and will be there 9 days! I will keep you posted if I planned out our trip right and we are definately on our way!

Grandma Lea completed her Boston 3-Day Breast Cancer walk!! See her picture above at the finish line. Way to go Grandma!!! That is an amazing event - 20 miles a day of walking for 3 straight days. She was looking forward to sleeping in a bed again and having a good meal but enjoyed the whole event. She is looking at doing it again later this year at another event!!!!!

Guess that is it! Looks like the weather might be a little better this week. It has been so rainy and cooler. Feels like fall not August!!!! I sure hope so, summer is short enough and then not to have the whole month of August really stinks! Guess you can tell I love the heat! Not sure why I live in CNY then???

Have a great week, thanks for checking!

Monday, August 11, 2008 6:10 AM CDT

Great news!!! Dejah is doing so much better. The breathing tube has been removed and he is probably moving out of ICU today to the regular floor. Way to go Dejah!!!

We get ready to start another week of activity here. Tyler had Camp Columbus last week, and he seemed to love it - he was out the door smiling everyday to get on the bus. This week Owen and Jake have religion class. Jake is very curious of what 'toys' they will have at religion!!

Owen continues to have his cough. He sounds so deep and barky every morning, but once he is up and about he feels better. So hoping he continues to fight it and get over it. He has had no fever which is what we have to watch for, as that could mean it is getting into his lungs. So so far so good, and he does have an immune system now, which lessons the worry of him fighting it.

Thanks for checking on us!!!

Saturday, August 9, 2008 7:43 PM CDT

Life here continues to go well and we are enjoying everything. Owen started feeling sick yesterday, his chest was hurting and he was coughing. This morning he woke up barking like a seal and saying his chest hurt alot. I took him over to the doctors, as he is still at high risk for Pneumonia, and will be for another 4-5 months. Luckily it is not in his lungs, he is clear as a bell and just coming down with a cold it seems. He is feeling better now, I think the morning and night are worse.

I have urgent prayer request for our Cousin Dejah. Please check his website site below. His lines became infected and he is in ICU right now and fighting hard. He is being kept mostly sedated to prevent him from pulling the breathing tube out. He has some bigs days ahead of him and many weeks to recover. Please keep Dejah and his family in your thoughts and prayers!!!!!!

Nucor is having a blood Drive on August 26th from 9am - 2pm. Blood supplies are very very low and are being given on a critical need only to patients. Please consider helping out! You can call me at 258-4205 to set up an appointment or walk-ins are welcome. It only takes about 45-1 hour of your time.

Sunday, August 3, 2008 8:16 PM CDT

Where does the time go? Seems like days are flying by and we are enjoying them so much. How did we fit all the hospital trips and stays in??? Seems we have no time anymore - but I love have this kind of business!!!

Friday we went to Seabreeze for Nucor Day. The boys, Chris, me and Kim. Owen was the big guy this year... him and his buddies Sean and Brandon went off of their own all day and enjoyed the park. We would see them once in a while in passing and they would wave, grinning ear to ear that they were now old enough to hang on their own.

Jake enjoyed the wave pool so much this time. He was crashing the waves and even swam underwater under my legs - first time he went under on purpose!!! Tyler loved the wave pool too. He would dive under water as the waves came and just float with the waves underneath. He loved it and not wearing a bubble helped so much. I was hoping he would give up the bubble seeing how much easier it was to do things without them, but Saturday he was back to his bubble at home.

The boys were jumping off me knees to Kim and she would catch them. This was fine until one time, she was wiping water from her eyes and Tyler jumped, needless to say she didn't catch him and he went flat on his stomach under water. He came up and looked at Kim and yelled "What was THAT"!!! It was so funny!!!!

As the day was coming to a close, Kim and I searched out Owen so we could do some Big rides with him. We did the log ride, the Whirly Bird, the new Music Ride, the Dragon ship and also the Screaming Eagle. Owen wasn't sure about this - it is the only ride he will not do at Seabreeze. Your legs dangle and the ride goes around in a circle and you go upside down. He finally agreed to try it, it was a first for me too. He loved it!!! (me too)

We ended up leaving Owen with the Deckers and headed home around 8. Owen and the Deckers closed the park and he arrived home at midnight, very chatty and wanting to fill us in on his night - despite the fact we kept falling asleep on him!

Saturday morning arrive and it was the Kolczynski Family Reunion day. It was pouring outside and the day was to start with an 8am golf tournament!!! Luckily it did clear and we were able to play with only a few showers. Owen was not so chatty when I woke him at 7am to go!!! The day of golf was fun and Owen had a few good putts for us which thrilled him, since he was bumming that he can't hit it as far as Papa, me and Uncle Steve.

After golf he was off to Guitar lessons, grandma pat brought him so I could finish getting ready for the party at our house. Pretty soon everything was in full swing and the pool was full of kids having fun! Things got a little crazy when the water ballons came out. We could not fill them fast enough. Even some of us big kids got involved!! Course a few broken balloons led to a few people getting tossed in the pool for getting someone wet! Tyler thought that was funny people getting pushed in and thought he should push me in. I grabbed him and jumped in with him! He was NOT happy about that! Although I think he will not want to push anyone in again!!! Or at least I hope - that will not be a good thing for him to learn!

Thre rest of the day went smoothly and lots of laughs. We have such a good time, I am not sure how long we have been doing it - I think 13 or 14 years, amazing to see how things have changed. Even for us, no kids to babies, to kids running around and not having to be watched constantly. Others were young and now are graduating and off to college!! So many changes. My Aunt Alice and Uncle Chet celebrated their 45th Anniversay!!! Wow that is awesome and coming right behind them, the 'baby' brother Alan for my fathers siblings is turning 60!!

The night ended with some good ol' card playing Pitch. Which always is a lot of laughs. The party wrapped up by 11 and off to bed, the boys had had another full day!

Today was quiet day. I finished up the pickup this morning while everyone was sleeping and got groceries. Owen didn't leave bed most of the day - he was exhausted. Tyler, Jake and I played some games, and brought the paracute outside and had alot of fun with that. We even took Nikki for a walk. My very much over weight dog need to lose some weight in the next 6-8 weeks. My vet was not happy. She gained 12 pounds since last year and she was 15 lbs over weight then!!! She weighs 116 lbs!! Yikes!!! So I need to really watch her eating and make sure she doesn't eat any of champs and start some walking with her.

I guess that it, ready to turn in, it has been a very busy weekend!!!

Thanks for checking on us!!

Tuesday, July 29, 2008 5:47 AM CDT

Life is good. I have returned to work, but had a good week off despite the weather. Friday did end up a very nice day and we headed to Seabreeze for the day with Aunt Shelly, Uncle Pete, PJ and Lexi.

Jake was happy to have Lexi to hang with in the splash zone as he does not like the water slides. Tyler is now doing the tube and body slides all by himself! He loved the enclosed tube ride, he would yell the whole way down so he could hear himself echo - then at the bottom he would yell 'Awesome!!! - Again, Again!' We hopped back and forth between the dry and wet rides all day and eventually closed the water slides at 8pm, but not to worry the dry rides were open another 2 hours! So yes we closed that side too! Jake lived on the airplanes, he would just get off, jump back in line and do it again. I had to smile as I remember Owen doing the same his first time to Seabreeze many years ago.... Owen of course was running to each of the big rides. Even after PJ left he would leave us, and run off to do a big ride and then return. Tyler wasn't able to do the big rides. I had bought him the kid pass (under 48") and he is just below 48" so usually he is able to go on them. Since he had that pass - they automatically do not allow him.

We return this Friday for Nucor Day at Seabreeze so he will get a chance then to ride the big ones. He is a daredevil and loves the excitement!

Saturday was Jakes baseball picnic and his real birthday! Finally he reached his birthday! He was so confused - we had the family party for all the boys in June, his kid party last weekend and now his 'real' birthday! He wanted to know who was coming to his party on saturday... hmmm just us! When the rain started to roll in at the picnic we headed to Walmart as he wanted to pick out his gifts. We returned home and I had to wrap his presents so he had a surprise, and he helped me wrap them. LOL I had to take pictures of him unwrapping and he was so happy! I asked him if he liked his presents that I picked out for him - he looked at me - and said 'Mommy - I picked them out!' He is too funny!

Sunday morning Owen went fishing with Uncle Steve. No luck - even when he took Uncle Steve to the 'secret spot' on the lake! Later Grandma Bonnie and Hank came over to hang by the pool and enjoy the day. Finally I got a day at the pool just relaxing and having fun with the boys!

This weekend is my family party - The Kolczynski family / friend Golf tournament and party. So it will be another fun weekend for everyone!

Owen continues to feel good and is enjoying summer. He has a checkup with Dr. Laducca this morning for his warts, but so far since having them frozen they have not come back to hopefully they are finally gone! He is going to go to Mom's afterwards. Hopefully the kids are around in the neighborhood so he can have a fun day of playing!

Have a great day!

Wednesday, July 23, 2008 8:39 PM CDT

New pics on photo page - couldn't take the big snake off yet!

Owen's doctor appointments went well on Tuesday. First Darren (therapy) - he is now going every other week, but we missed 2 weeks ago with Grandma Mary passing.

So we had a mini session with Tyler, Jake, and Owen. In 2 weeks they will all return and maybe get to the core of Owen and Jakes conflicts. Not sure why they are so at ends. When Owen is away, Jake misses him alot, but upon return they are at each others throats again. Perhaps it is sibling rivalry or maybe there is more. Owen does seem to have no patience for Jake where he does with Tyler and with any little kids.

Next we went to breakfast and then off to Chucky Cheese in Syracuse to kill some time before Dr. Cherrick. The boys loved Chucky Cheese as usual!

His checkup went great - no issues and his counts are great. Did talk to her about how Owen only took 2 Vicodines his entire trip to Canada and then only a couple at Camp Good Days, but back at home he seems to complain of pain and wants them again. We agreed it is out of boredom and not being busy so he focuses on pain. He probably does have aches and pains but not to need pain medicine. Since if he is busy - it takes his mind off of it Tylenol or iBupropin should be enough. He can take iBupropin now that we do not have to be concerned with his counts dropping.

Today was suppose to be a mini pool party - but alas the weather appears to not want to be nice this week. Rain or threats of rain and thunderstorms daily. We were also going to leave thursday morning to head to Old Forge. We have also cancelled this, we don't want to head up there to sit in a hotel room!

So today we headed to Ithaca to the Science Center with Owen, Tyler, Jake and Owen's friend Sean. They all had a good time and it was fun playing with all the different science projects. The boys especially liked building water dams, water falls, and the air tubes with blowing balls. There was a big outside area to do bubbles and music, voice echo's and climbing.

Tomorrow - we will attempt again to have some friends over to swim, but so far it does not look good and will need to think of another in door activity to do! My dreams of being outside all of my vacation are fast disappearing!

Have a good night!!!

Wednesday, July 23, 2008 8:39 PM CDT

Owen's doctor appointments went well on Tuesday. First Darren (therapy) - he is now going every other week, but we missed 2 weeks ago with Grandma Mary passing.

So we had a mini session with Tyler, Jake, and Owen. In 2 weeks they will all return and maybe get to the core of Owen and Jakes conflicts. Not sure why they are so at ends. When Owen is away, Jake misses him alot, but upon return they are at each others throats again. Perhaps it is sibling rivalry or maybe there is more. Owen does seem to have no patience for Jake where he does with Tyler and with any little kids.

Next we went to breakfast and then off to Chucky Cheese in Syracuse to kill some time before Dr. Cherrick. The boys loved Chucky Cheese as usual!

His checkup went great - no issues and his counts are great. Did talk to her about how Owen only took 2 Vicodines his entire trip to Canada and then only a couple at Camp Good Days, but back at home he seems to complain of pain and wants them again. We agreed it is out of boredom and not being busy so he focuses on pain. He probably does have aches and pains but not to need pain medicine. Since if he is busy - it takes his mind off of it Tylenol or iBupropin should be enough. He can take iBupropin now that we do not have to be concerned with his counts dropping.

Today was suppose to be a mini pool party - but alas the weather appears to not want to be nice this week. Rain or threats of rain and thunderstorms daily. We were also going to leave thursday morning to head to Old Forge. We have also cancelled this, we don't want to head up there to sit in a hotel room!

So today we headed to Ithaca to the Science Center with Owen, Tyler, Jake and Owen's friend Sean. They all had a good time and it was fun playing with all the different science projects. The boys especially liked building water dams, water falls, and the air tubes with blowing balls. There was a big outside area to do bubbles and music, voice echo's and climbing.

Tomorrow - we will attempt again to have some friends over to swim, but so far it does not look good and will need to think of another in door activity to do! My dreams of being outside all of my vacation are fast disappearing!

Have a good night!!!

Sunday, July 20, 2008 8:21 PM CDT

Owen made it home safe and sound, but a little sad... it went by way too fast!! He wanted to stay longer! He was full of stories on the way home. He was very excited that they went scuba diving in the pool! He thought it was awesome and wants more! His cabin was top pranksters I think - they hit Cabin 1's mattresses!!! Put them all over camp and the last one wasn't found until the last day in the rafters of the nature center! Not sure who the bigger kids are the counselors or the boys! He had a quote in the newsletter that I want to share:

"Camp Good Days is the most special camp because I can be myself and be with other kids who share the same problems. Also, I can be a kid again"

I think that sums up what a wonderful program this is!!!!

We stopped for dinner on the way home and then straight to the movie theatre for Batman! We met Aunt Shelly and PJ there. What an awesome movie!!! I want to see it again! Definately not for Tyler and Jake though it was very dark and I was clutching at Shelly many times!!!

Saturday Jake had his last baseball game, and Owen had guitar practice again. Then we were home for a little swimming before heading to Emily's graduation party. The boys had a blast, lots of kids and a jumpy house, and lots and lots of swimming. By 10pm they were ready to drop but not ready to go! We prodded them out of there anyways.

Sunday was Jake and Tylers birthday party. They had Max Man Reptile Rescue come to the party. It was lizards and snakes galore for the kids to learn about and even us adults really enjoyed the show. Jake got to hold all of the reptiles and Tyler was ready to hold a few too. The biggest excitement was when Donte the 14ft Python came out to play! The kids all lined up and the snake was stretched across all of them. They struggled to hold the mighty snake but were thrilled!! Even us parents took a turn to hold him!

I am off this week so we are planning some outings and fun for the week. Tomorrow I am in a golf tournament though so the kid fun starts on Tuesday. Owen has a doctor appointment at 2 so we will work around that.

Enjoy the pictures - more are coming and some from camp and BC too!

Wednesday, July 16, 2008 5:41 AM CDT

Well Owen made it off Monday and there were no tears flowing from him or me as he pulled away! Unlike last year as both our stomachs were in knots of the unknown and first time away from home on his own. He was so excited to be going and had already chummed up with a couple of boys while we waited for the bus. It was so funny sitting there listening to them get to know one another - talking about what they like and their hobbies etc. One one says "I can do a one arm pull up - can you?" Owen looks at him and says "I don't think I can do a two arm pull up." I had to choke back a laugh. But that is the beauty of this whole group. They just say what they can and can't do and are not shy about it. They don't feel inferior because they can't do something! As the bus pulled in, Owens supplies were loaded and off he headed... ahhh Owen - Did you forget your mom? He smiled and headed back and I did at least get a hug and a kiss!

He called me yesterday at work. He was having a blast doing 'nothing' LOL After pulling a few teeth - I found they had been swimming alot, today he is going fishing (hopefully no worm eating this year - but I doubt that), and are full of pranks on each other's cabins. They have put a canoe and filled it with water in one cabin. Then they TP'd (toilet papered) themselves and blamed another cabin for doing it to them. He said they are just full of jokes. There are several kids back from last year that were in his cabin so that is good. His 'girlfriend' - the counselor Jen is not back. I asked him how long till he found another 'older woman' and he just laughed. Then it was 'Well I have to go eat Mom - love you' and he was gone. I am so happy he is loving this week at camp it is just the greatest thing for these kids!

Tyler stayed home Monday - his rash was looking good, very faint but he seemed tired so I wanted to give him an extra day. Tuesday Jake and Ty went to the Zoo with freedom camp. They were both very excited in the morning waiting for the bus. They returned home and Tyler couldn't wait to tell me he saw big bear and elephant and monkey and began to dance around like a monkey. Jake like the crocodile and monkeys. He was said though - they ran out of time and couldn't go shopping for a souvenier at the store. Jake loves to buy his little toys!

Today Tyler and Jake have their yearly doc appt. and shots ouch! Jake will need to go first or he will stress the whole time once he sees Tyler get shots.

I have golf tonight and it looks like a gorgeous night for that!

Have a great day!

Sunday, July 13, 2008 8:51 PM CDT

In case you did not notice - I added a box above to put your email address in and you will be notified when I update Owen's site. I have become a little slack since things are good - allowing us to just focus on LIFE for once!!

Thursday night we went to the hospital to visit our new friend Brennan and his family. He had been in there several days for a fever but was feeling fine. Sounded like he was getting a little stir crazy so we thought we would make the trip. Tyler was thrilled to be back at the hospital and hasn't forgotten where anything is!! Jake latched on to Brendon - he is 5 also and they played great together. Owen curled up on the bed with Brennan and just like 'ol' times was as comfortable as can be! As luck would have it... guess who was working??? As we were walking down the hall to Brennans room we heard the call - 'Owie!!!!!' and sure enough there was Brooke - the love of his life! So it was a great trip all the way around. It was nice sitting and chatting with the family and the boys enjoyed our mini trip too!

Well we had an 'exciting' weekend - everyone is ok.

Jake slept at Grandma's Friday night and Owen and I met them at the game. Jake had diahrea at Grandma's and said his tummy still didn't feel well. Needless to say he lasted one inning and was throwing up! He had a fever of 102.3!! A dose of Motrin and he was sound asleep!

Tyler and I were playing outside when I say his hands, feet, and stomach were covered in red spots!!! I panicked that it was Chicken Pox!!! Off to the docs with him. I dropped Owen to Grandma Pats to take him to his first guitar lessons so Chris could stay home with Jake and not have to drag him around not feeling well.

Thankfully Tyler does NOT have chicken pox!!! He has Coxsackievirus (hand mouth foot disease). This is viral and like a cold you can do nothing for it. Tylenol if he runs a fever which he has not so far.

Owen was on cloud nine from his lessons and very pumped. I hope he keeps this going - he really needs a hobby ( not video games!!!) and I don't see sports as Owens strong suit... he does have a great ear for music though.

Jake continued to run high fevers all day and sleep on and off. I alternated Tylenol and Motrin. He had moments in the day were he was perky and you would know he was sick but they were short lived.

Papa Fred and Grandma Lea stopped by after golf and we had a little cook out and the Tyler and Owen swam alot. Jake sort of breezed in and out as he felt up to talking.

Today Jake was all better. Tyler looked like a cheetah his arms, legs, butt, stomach, back face, neck every where had some of the rash on it. I am wondering about this as it 'should' only be around the hands, feet and mouth.... He does appear to be starting to clear a little bit though tonight. It is not as pronounced but is still all over.

He fell sound asleep at 4pm and slept until 7! I got Owen packed for his big camping trip this week for Camp Good Days. I did run to the mall to try and find some PJ's. He only sleeps in boxers at home but we thought it might be nice to have some clothes on him. Ha - easier said than done. There is no such thing as PJ's for older boys. Younger ones have the cartoon characters and Owen still would wear them but seems they stop at 10 and then there is nothing until you have men sleep pants. So I guess all boys sleep in boxers? I did find one pair at Kohl's and then bought him some sweat shorts that would come down a little longer than boxers. He is very excited about his camping trip though!!!

Chris is on the mend as well. His face is normal size again - but he does have a lot of scabs and scars on his face. He is eating more and more and only has small boughts of pain.

Owen ran around chanting over the weekend -" I'm the only one who is healthy!!!" LIttle stinker!

Wednesday, July 9, 2008 8:31 PM CDT

Things are going well with the boys. It is nice to have Owen home although he does miss Canada already. He brought home lots of gifts for the boys from everyone - shirts, books, stickers... One of the shirts is a jersey of T-Rex, I said 'Oh look at this beautiful shirt for Tyler!' Jake got all sad and said 'Oh I liked that one - its Tylers?' No you silly goose, who do you think gets T-REx? That certainly brought the smile on!!! Thankyou every one for the awesome gifts!!!!

We had a very nice weekend, nice and quiet. Sunday we went to Sam T's graduation party. The boys spent the whole time in the pool and got in quite the ball battle with Kim and Nic - I think Nic got the worst of it, all the kids ganged up on her.

Then we headed off to Cayuga Lake to John and Heather's place. John took the boys out on the boat for some tubing. Jake wouldn't go but Ty and Owen had a blast!!!

Great Grandma Mary passed away Sunday morning. She was 90 and had lived a great life. Her funeral was tuesday so we spent the day at church and then at springside for lunch. God bless you grandma and we hope you are at rest now. Owen went with us and got sad a couple of times, but we told him it was not something to be sad about. Grandma had been sick and she was much happier now.

PJ came home with us after Springside to spend the night. The boys enjoyed having a new playmate and were swimming until 10:30 at night till I finally had to kick them out so I could sleep!

Jake and Tyler started Freedom Camp this week. They LOVE it and are having a blast. Although the bus a 7:40 is a tad bit early for them! Tyler falls asleep everyday on the bus ride home.

I finally made golf tonight - first time this season on the league. It felt so good to get out. I will probably be sore tomorrow as I can feel it in my back already. That was the first time I have even swung a club all year!

Then there is Chris.... He started feeling sick friday morning. He ran a fever friday night, and come saturday morning his face was swelling and his throat was sore. He did not come with us anywhere on Sunday, just stayed in bed. He didn't want to go to a doctor - he kept thinking it was going to go away, even though his face was twice as swollen on sunday. Monday morning he called me and wanted to go to the doctor. He was nervous - he now had blisters in his mouth and his whole right side of his face was swollen now.

I took him to the doctor and he was told he had Celulitus, which is a bacteris under the skin and can be very serious left untreated. He was put on an antibiotic and told to return if it didn't start improving. Tuesday he looked no worse but was in pain now. Wednesday his right eye was so swollen it was barely open, he decided it was time to return to the doctor. He saw a different doctor and was told it was Shingles!!! What is this possible, we both get Shingles within a month of each other???? Doctor said it is unrelated and he did not get them from me. I am thinking we have finally mentally relaxed over the stress of the last couple years and our bodies have finally reacted to the amount we had been under.

He has to go to an eye doctor tomorrow since his eye is so infected. Shingles in the cornea of the eye can cause blindness! The doctor didn't seem to think it was infected but wanted an eye doctor to take a closer look. He can to return to the doctor on friday to evaluate his face again.

I told Chris this was his punishment for teasing me and calling me 'Elephant Woman' when I had Shingles. Hopefully he is finally on the right path of treatment and will start to feel better.

Guess I always need to worry about one of my 'boys'!!!

Have a great night.

Sunday, July 6, 2008 6:09 AM CDT

Thursday night we took Tyler and Jake to Uncle Billy's and Lorraines beach to watch the fireworks. Tyler was nervous at first and then realized they weren't loud as we were far enough away from them. I few got louder and he immediately put his ear muffs on and was all happy. They loved seeing them and there were lots of oohs and aahs and naming all the colors.

Friday I took them down to the firemans field days. There were no rides this year but they were just as happy playing on the playground and listening to the band. Jake had a friend from school Connor there and his brothers so he was in his glory. I think no matter where I take Jake he know someone! We stopped for icecream on the way home, and then waited for Owen to arrive....

At 8pm we were out playing and they saw Grandma Pat's car coming down the road. The both went running 'Owie, Owie!!!' Tyler went flying into Owen's arms and Jake into Grandma Pats. Then Jake ran around the car to hug Owen and they paused for a second - do we hug??? But then the big hug came and Jake told Owen he missed him... oh to hope this is a new start and no more fighting!!!

Finally I got to have my big hug from Owen. He looks great!!!! He was full of stories and how much fun he had. I am so glad he was able to go! Pictures are coming... not sure how good they will be as Owen was the photographer! They had taken the film in to be developed but they got as far as negatives and the printer broke. So I will have to drop the negatives off.

Owen had trouble sleeping his first night - his time schedule is off since BC is 3 hours behind us. But he finally slept and then slept until 10:30 in the morning. By noon he was 'bored'. Home life is just not as exciting as vacation! He called his friend Sean to come over and they swam for a bit and then were playing video games. Tyler was in his glory having Owen home so he could watch him play games again.

Owen then went to the Double Days game with Sean. Tyler, Jake and I played ball out in the yard and swam some more. After dinner they wanted to go for icecream. Yesterday at Green Shutters they kept getting on the rock wall which is falling apart and I had to keep hauling them off - afraid they would get hurt. so I told them - No rocks or no more icecream! We arrived, got our cones and went and sat in the swing chair. Tyler looked at me and waggled his finger and said 'No Rocks'. Thats right - good job! They were good so I guess we can go back LOL!

Owen arrived home after 9 and had a great time - Thankyou Aunt Kathy!!! This is going to get hard - if Owen needs to be entertained everday!!! He is only home for a week and then heads to Camp Good Days for 5 days. He is very excited about going this year as he had such a great time last year!

Today we have 2 parties to go to. First Sam Tortorici's graduation party, and then off to Cayuga Lake to meet Grandma Bonnies beau's family at a cookout. The boys will have a great time at both I am sure!

So we are all together again - and remember that no fighting between Owen and Jake - well I could dream.... they are back at it. Although I can say it has mostly been Owen teasing Jake about something. Need to nip this in the bud quickly as it was so nice to not have it for the last 10 days!!!!

Happy to have all my boys back and Thankyou everyone in Canada for such a great time for Owen!!!!!!!

Tuesday, July 1, 2008 5:19 AM CDT

Great days continue for Owen. He is having a blast in BC. They have been busy everyday playing at the beach, in the pool and just lots of cousins to hang with. The best part of all??? He has not asked for 1 pain medicine!!!! Mom thought for sure he would, she can see he is in pain sometimes when his hobble walk is worse after a day of ramming but he just keeps on going! A few times she can see he gets sad that he is not keeping up and kind of takes a break but then is right back in with everyone. How wonderful is that!!!! I think this trip is going to give him a world of confidence in that he CAN still do everything - maybe not as fast - but he CAN! He is so busy he barely stops to talk with me. I think I am on the phone with him a total of 5 minutes a night and he is just so pre-occuppied with getting back to the fun. I am so happy for him!!!!

Happy Birthday Tyler!!! Tyler is 9 today!! We celebrated last night because I have a dinner tonight I have to go to. Believe me Tyler was excited to get his cake last night! We got him a new bike, goal is to get rid of the Coupe car he continues to paddle foot around the driveway. He was excited to see it and hoped right on, unfortunately we were on the brink of rain and the drops were starting so the first trial run did not happen. Tyler was running for the house at the first drop ( he doesn't do rain LOL)

I survived Go-Live weekend. It was some long hours, home at 9pm Saturday and 6 on Sunday but it was really smooth. No big issues, just hanging out to be able to help with questions. Yesterday on the first day of the office on - I was able to slip out at 5 so I could be home to celebrate Tyler's birthday since I can't tonight. But it sure is nice to have that over!!!

Not sure what we are doing for the 4th yet. Owen gets home late that day. We will see the fireworks thursday night - so I am going to get Tyler some ear buffs this year. He loves them - but hates the noise. So hopefully they will help.

Thanks for checking in!!!

Friday, June 27, 2008 8:30 PM CDT

Owen is having the time of his life!!!

First they went to Idaho to see Aunti Kay and Ester, then off to Creston, BC to see Aunt Anne and lots of cousins. Today they are in Castlegar, BC and he is out on the boat fishing - catching dinner he says! Lynne's grandson is there and they have just been non stop chatter since they met. So he is having a blast and no mention of not feeling good or being homesick!!! Yahoo! I am so glad - he needed this big break.

Just think he hasn't even made it to Great Grandma's yet where they will spend most of their time and with all the cousins. So I guess I can put my fears to bed of him missing me and getting down!!!!

Things are good here, alot quieter with no fighting between Jake and Owen! But Ty and Jake are starting to pick up, must be they just need that brotherly spats!

Jake asks everyday if he has school tomorrow - he hasn't got the whole concept of summer vacation yet and loves school.

Tomorrow is my big go-live on the software, so my nerves are shot over that! I will go in at 5:30am in preparation for the start at 6:30am! Yikes!!! Hope it all goes smooth, I am hoping we can make it to my cousins son's graduation later in the afternoon - I can hope anyways!!!

Just wanted to let you all know that Owen was doing great!!!!

Have a good night!

Wednesday, June 25, 2008 5:18 AM CDT

Good days continue!!!!

The school year has wound down again. Tyler finished school yesterday. I went to his class for a little party and to hear him read a funny poem in his 3rd grade class. He had a pre-recorded power point that he went through with his voice reading the poem. He did a GREAT job and was very pleased with himself! He came flying into my arms when he was done. We stayed in his class for a bit for some snacks and then headed down to his boces class. He has been with this 'family' for 4 years and today was it. He now transitions back to the Union Springs school district with his brothers. He will be at AJ next year in their boces class. While I am excited for him to be joining our regular school district, change is always hard. His teachers have done a great job with him and it is a great comfort knowing he is with them and they 'know' Tyler. I am sure the new teachers will get to 'know' him very quickly though!!! So as we said good-bye to this awesome group it was a bitter sweet moment with many changes to come. Tyler also took his 'last' ride home with Bob his bus driver. He has rode on Bob's bus for the last four years as well. He was generally the only one on the bus or 1 or 2 other kids. Now he will ride the BIG bus with Owen and Jake and many other kids! I think he will do ok as he does LOVE the bus. So all sorts of good-byes for Tyler yesterday.

It was also Owen's last day of school as he is playing hookie today. He headed to Buffalo last night with Grandma Pat and they will be on a plane to British Columbia this morning! They are first going to Idaho to visit Auntie Kay, a friend Ester. Then heading to Creston, BC to visit Aunt Anne on thursday. Friday then will head to Castlegar, BC to stay with another friend Lynne, and finally on Saturday head to Kelowna, BC to stay with Grandma Faynor. In Kelowna are lots of cousins, Uncle John and Aunt Claudia. Dejah, Rayne and Gloria are going to come down from Vancouver while they are there too! What a great time and I am so jealous!!! Last time I was there was 2005, as me and Dejah's mom and Dad celebrated both of our boys coming through Cancer treatments, then shortly after both relapsed. Now this summer will once again put Dejah and Owen togehter to CELEBRATE that they have beat Cancer again and this time for good!!!!!! I am planning on getting back next year, but with a disney trip on the horizon it was too much this year.

Owen is VERY excited. He had a moment on monday night. He was saying he didn't feel good and I had the suspicion it was nerves. Later he told me he didn't want to go. He had never been away from me for that long and then he comes home for 1 week and would be gone for another week to Camp Good Days. He didn't think he could do it. I calmed him down and told him he was going to have so much fun that it would fly by and he wouldn't even know i was missing! Plus this weekend and next week are our Go-LIve on a new system at work and most likely I am not going to be home a whole lot (arghhh) so it was a great time to go!!! When he returns from Camp Good Days I will be taking some time off to spend some summer time with the boys. So this seemed to make him feel better and by 5:00 last night he was on cloud nine!!!

So today is Jakes last day. Only 1/2 day. He has been loving these last several days. All fun, picnics, bringing games from home - its the best!!!! I think he wants school to stay like this all the time, as the social part is his favorite!!! So my baby has graduated from Kindergarten!!!

Tonight Jake has a baseball game, so I will be missing golf again! I have yet to make it this year....

Have a great day and thanks for checking on us!!!!!

Friday, June 20, 2008 5:21 AM CDT

Owen's checkup went great on Tuesday. His counts are looking beautiful!!!! WBC 8.0, Platelets 263 and Hemoglobin 13 ( I think - I forgot to take the sheet so this is from memory! ) He continues to have a cough but Dr. Cherrick says his lungs are clear, so maybe some post nasel drip happening. I spoke with her about the Bone Marrow. At this point we are not going to do it. Since he was being put out for the surgery for the removal of his port it was an easy thing but then things got messed up that day with them taking him early. So she really feels it will show nothing it is more to make me feel at ease, which is fine and if I am still wanting it she would do it. But it basically will show if he has a relapse 'today' and from his bloodwork he is looking great. So I have consented and agreed to not do it. Owen wanted it for the 'buzzy medicine' but that was a definate NO for the reason to do it LOL.

We met another family while we were there. Brennan was recently diagnosed in December and is having a hard time. He is 12 - so a tough age to 'start' at. Kids seem to roll with the whole cancer treatment thing when they are young. Owen was chatty as can be and told Brennan about his good days/ bad days and how he gets through. He gave him some tips on what to do on 7H - so watch out 7H you have Owen coaching Brennan, who knows what you will be in for!!!!! I think / hope it helped him to know someone his own age and we have told him our door is always open!

Tyler IS fighting pink eye and it is nasty. He is on his 3rd type of drops and it just doesn't seem to be getting better. He also may have conjunctivitis. I wish they would put him on an oral to help. He starts to get better and then it flares again. Swimming may have irrated it or the pollens in the air. So he has been out of school since tuesday with this. I am waiting to see how he looks this morning on whether he goes or not. He was looking so-so last night. His right eye had started to get infected as well as his left, the worst of the two. His right eye looks great, but his right still appears quite red. Today is his field days at school so I a am hoping he can join in on the fun!!!!!

Yesterday was Jakes picnic at school, so I joined him for lunch. He was happy to see me come but then was off and running with the kids. I just can't believe how much these kids run and run and run - I was exhausted watching them!

Saturday is the family party for the kids birthdays. I have decided to roll all 3 into one big party vs 3 separate family parties. There birthdays are from May-July so in our short summer that used up 3 weekends. So we are hoping the rain holds off, saturday looks like the better day.

Owen made homemade pasta yesterday which he learned at school. Now lets see how this went. He made the dough... there was flour and egg shells from one end of the kitchen through to the dining room. I had to clean it up - I guess I was clean up committe. He started to roll the dough and needed help, so I finished it. He cut about 3 strips of the dough and was done- he was just 'showing' me how to do it, I could finish it! Hmmmm he certainly has learned a great way to 'help' make dinner!!! Wonder if I can do that, who will follow behind me!! LOL oh well he was very excited to do this.

I guess that is it right now, good days and we are very happy for them!

Have a great day!

Monday, June 16, 2008 5:29 AM CDT

Things continue to go well.

Friday we went to the movies to see Kung Fu Panda. Tyler has been bugging to see this and was soooo excited when I told him we were going! Now he can't wait to get it for TV, he asks daily, so he is not understanding it takes a while to be able to have it at home!

Owen tried his best to convince him to go see HULK instead as it come out on friday, but Tyler would have nothing to do with that! So when Saturday started to rain, we packed up and went to the Saturday matinee for the HULK.

Sunday was Chris Birthday and Fathers Day. Happy belated fathers day to all you Dad's!!!!! We had Papa Fred, Grandma Lea, Papa W. and Grandma Lee over for the afternoon and a cook out. The Dad's were put to the test when Owens' remote control Dragon Fly went into a tree. Chris was mad and said it was too windy and he needed to not be doing it near the trees. Owen was in tears. So the Papa's showed their heroism and headed to check the tree out. Pretty soon the ladder was headed to the tree. Chris finally gave in and went to help. Next thing Chris was headed up the tree with it shaking like crazy.... hmmm maybe this IS not a good idea!!!! Luckily the dragon fly was rescued and no accidents!

I have to bring cake to school today for Jake. He has a summer birthday, but they are letting the kids celebrate if they want during the school year, so you can tell Jake wasn't letting this opportunity get by!

Tomorrow Owen has his montly appointment with Dr. Cherrick. It should be quick as it is just a check up and blood check. I am going to ask about the bone marrow test. Owen is startign to cough again so it will be nice to have another check on his lungs. I will also let her know Owen is headed to British Columbia next wednesday, but he is at a good point to go with no meds and no worries for fever.

I did notice that he has some bruising on his legs. I tell you my heart dropped. I asked him how he got them which immediately sent him into a panic. A couple look old though and I told him he is much more active now and most likely has some bruising from that. Jakes legs are quite full, but watching him run and jump and bang himself up - his are totally understandable! I don't like to see bruises on Owen but there are only a few and I hope they are 'normal'.

We'll keep trucking along and hope things stay well!!!!

Leanne has organized a team to walk in the Boston 3 Day walk for Breast Cancer. Her team will walk 20 miles - 3 days in a row!!! Holy - I am exhausted just thinking about that!!! I will be cheering from the sidelines for this one! Lets get behind these girls for this event!!!!!!

Have a great day!

Thursday, June 12, 2008 9:09 PM CDT

No I did not fall off the face of the earth!!! I did however have a business trip to Birmingham. Anyone want to place bets on if I had issues..... I am soooo cursed when it comes to travel. I make it there just fine. It was a good trip and I got to put faces to the remaining few members of the the nucor IT that I have not met before. However coming home we watched a storm roll in as we were waiting to board our plane and yep bingo - it hit, our flight was delayed due to our plane not being able to land and thus no one would make any connecting flights by the time it would arrive and we had to re book flights for today. At least this time I had traveling companions so it was much better getting stuck!

It was nice to arrive home today to a BIG welcome. The boys were very happy to see me and we spent the night swimming and having fun. There just wasn't enough hugs and kisses to give out!

Things were good while I was gone and all remains well here. Tyler has something going on. He was sent home monday thinking he might have pink eye. I thought it was just due to all the swimming. We have pinkeye medicine, so Chris started that right away just in case. Today he came home again and his one is had alot of red in it, and by the time he went to bed the whole eye was flaming red. I don't think it is pink eye because it has no discharge but it is certainly something! So what else would irritate his eye like that??

Jake had his spring concert today so luckily Grandma Pat was able to go. She said his whole face lit up when he saw someone was there to see him. He told me tonight that he was sad because he knew I would not be there and then Grandma was there and he was happy!!!!

I had Owen's 504 meeting this morning so I had to do it via phone since I was still in Birmingham. We are going to scale way back on Owen's support starting in 6th grade. He will continue his physical therapy as long as the orthopedic doctor says yes. Owen will see her again in August. His additional testing time will be reduced to 1.5 vs 3 times the length of time, and this is mostly for writing time. He is much slower and needs more practice to get his writing stamina up. But otherwise we are going to start him off as a 'normal' 6th grader. We are hoping to severely decrease his trips to the nurse too!!! I think most days it is just a social trip!

Looks like it is going to be a beautiful weekend and I am ready to sit and enjoy it!!!!

Have a good night!

Sunday, June 8, 2008 7:37 AM CDT

What a great night at Relay for Life!!!!!

It started out as a hot one as temperatures soared in the 90's and the sun was blazing hot. Owen walked his survivor lap with about 50 other survivors with Grandma Pat and me by his side. I felt the tears well up (good thing I had sun glasses on) as this is a very proud moment to be walking with Owen after all he has been through.

Next Jake and Aunt Dawn helped carry the Nucor Banner with several team members following in the team banner lap. Then it was off to play some games, enter some raffles and just have fun. Our team had 38 members, with groups of 2-5 walking at each hour of the relay. Thankyou to all everyone for voluntering for a time slot and walking in this great event!

One of the teams had a bouncing balloon for the kids to use and they took full advantage of this! Tyler and Jake had a blast on this and the sweat was pouring off them!

At 10pm was the Luminara ceremony. Each team read the list of names for the bags sold in Honor/Support or Memory of a special loved one. Owen stood up at the podium and read off our list of 35 names - what a beautiful site!!!! He did get sad during the ceremony as he noticed most of the names read were 'In Memory of'. "Mom - why are so many in memory of, am I not suppose to be here?" Oh my eyes welled up and I gave him a great big hug. I explained to him Cancer use to be so much worse as the doctors couldn't cure it and many people did lose their battles, but times are changing and the survivors are catching up with the losses and he is one of those people who are showing everyone that Cancer CAN be beat!!!!!

There was plenty of fun activities for the kids and it was non-stop action for everyone. They had a parachute activity and Tyler absolutely loves the parachute!!!! They did the cheese curl toss again and Owen and Jake were right in there to volunteer to have their faces covered in whip cream!

My cousin Missy, Mackenzie, and Mathew joined us in our overnight stay as well as Greggory Starr. It was nice to have all the kids and they enjoyed having each other. Mathew, Owen and Gregory wanted to do the DIVA lap at midnight - men dresses as women. So I ran home to get dresses for them. However when the time came... their nerves got the best of them and they chickened out!!!

Chris headed home around 12:30 with Tyler and Jake, they didn't want to go and there were tears but as much as I thought about letting them all stay I knew in another hour activities would start to wind down and they would be exhausted.

Owen and I searched out Lisa Giannone a little before 3 to make sure she was doing the pie eating contest at 3:30 with Owen. She was all for it! As we chatted Owens eyes were rolling as he fought to stay awake. He decided to lay down and take a power nap. Mackenzie, Mathew and Gregory were already laying down and taking a snooze. Missy and I attempted to make a make shift bed out of the chairs but believe it or not it was cold! I think the heat of the day and the dampness at night went right through us. At 3:30 I attempted to wake Owen up but there was no moving him. I decided I couldn't take the cold and ran home to get more blankets. As I was gone Margaret came over to get Owen as they didn't want to start the pie eating without him. He did get up with Missy and they headed over but he couldn't do it - he just couldn't wake up! I returned and Missy and I were grateful to have the warmth of the blankets and actually dozed until 5:30! Then we were up and tearing down camp.

The kids got up for doughnuts at 6:30 and then the closing ceremonies. Owen received a plaque and sweatshirt along with Bob Lawler - another teammate who is in treatment for cancer - for being Top individual fundraisers - both raised over the $2500 mark!!!!! Nucor's total was over $13,000!!!!! Isn't that awesome!

So far we have mostly just got the word out and let the donations come in. Next year we are going to do alot more fundraising and who knows what we can accomplish!!!!

THANKYOU EVERYONE FOR MAKING THIS EVENT SUCH A SUCCESS

Saturday I left Owen home to sleep and Jake, Tyler and I were off to soccer practice and then a baseball game. We retured home ready to go swimming!!!! Yeah the pool is clear and the weather is great for swimming. Tyler was the first one in the pool thisyear. Owen was sad he slept through it as he is always the first in! It was a great day and we are looking forward to more fun in the sun today!

Friday, June 6, 2008 5:22 AM CDT

Happy RELAY FOR LIFE Day!!!!!

We are looking forward to a great night of fun and it looks like it is going to be great weather! 90's in the day and in the 70's through the night. Not sure if we'll feel like a fire for smore's with those temps!

THANKYOU EVERYONE FOR YOUR SUPPORT AND DONATIONS AND MAKING THIS THE BEST YEAR YET!!!!!!!!

Tuesday, June 3, 2008 5:19 AM CDT

We are enjoying life here!

Saturday Jake had a baseball game and had 3 hits and 4 RBI's!!! His name was in the paper for it so he was very excited although he wanted to know why his picture wasn't! We headed to the mall later and got haircuts for Jake and Owen. The lady looked at Tyler and said looks like he needs one too.... I told her she was welcome to cut it, as long as she had ear muffs and was willing to hear him scream through the whole thing! I think it is time to bite the bullet though and Chris needs to buzz him. It is so long. He looks better with longer hair but he is beyond having long hair, it is unruly now! I think he can almost have pony tail!!!!

Sunday we had lots of visitors. First Papa W and Grandma Lee came by in the morning. Later Aunt Shelley, Uncle Pete, Lexi, PJ and Grandma Bonnie came by with Aunt Shelleys new addition - a golden retriever puppy Gracie. The kids had fun and Lexi didn't have a care that she was the only girl in the pack, she can hang!!!

Tonight I have a Relay For Life meeting. I will be picking up the T-shirts and getting our Nucor Tent location. I will have the T-shirts at the event for pickup or I will have them at work if you want them before the event.

Wednesday Owen and I will go Relay For Life shopping for snacks, drinks etc for the home base. I have yet to make sanity night (aka - golf) this year. It has been too crazy. Jake had baseball practice every wednesday and tomorrow I just have to much to do to be ready for Friday. Thursday night is Mom's Night Out dinner so I needed a day to get things organized.

Owen continues to be in a great mood! He still has a little bit of a runny nose, Tyler seems to have taken on the bulk of that - yes his nose is running. Hopefully it warms up and he can get over this on his own. It is so nice though to see Owen deal with life and not be so nervous. His confidence level has increased so much since stopping treatment. Tyler is havign some great days too. Today he is having blood work done and a dentist appointment.

Owen has his 11 year pediatric appointment this thursday. I will talk to her about these warts on his hands and hopefully we can get rid of those soon!

So we have been crazy busy, but a good busy. I like being busy with fun things!!!

Thanks for checking on us! 3 more days till the Relay so click on the link above to keep our team rolling we are doing awesome!!! Thankyou!!!

Friday, May 30, 2008 7:53 PM CDT

Things continue to go well. We continue to have busy days.

Tuesday night I went out with the girls from work to see Movin' Out in Syracuse. We have been postponing our night out from our employee assoc. money we get each year due to me having to cancel a few times 3 years ago with Owen getting sick. So we decided to hold onto it and now we had 3 years worth to have a big night out. So this was the big thing. The play was ok. The music was GREAT, but it was only a show played to music and no talking so it was different than the normal shows that are put on. We still had a good dinner and good time out.

Thursday I took Tyler and Jake to the BackYardigans show in syracuse. It started rough as we arrived at the landmark and I realized I left the tickets in the car!!! Tyler and Jake were not happy we had to walk the several blocks back to the car, but alas we made it to the show in time. I guess it does pay to be early!!!! I am normally late for everything!!!! They enjoyed the show and it was cute. I think they were the oldest there, but they still love this show. I had the sad feeling that this is my last little kid show. My boys are growing up!

Owen has been fighting a cold but he has done great with it. Normally the slightest sign of sickness he is down for the count and a wreck. He has been going to school everyday with no mention of not being able to do it. It is great to see his confidence coming back!!!

Tyler has been having good days at school. We have finally gotten on a good routine with his medicine so maybe that has helped. We crush his pills and put them in a teaspoon of Sunny D and he has been a champ about it. Still doesn't like it but is not fighting us.

Jake has soccer practice tomorrow at 10 and a baseball game at 11:15, here we go...... Although it is suppose to rain all day so we'll see.

Check out the Relay for Life site - Nucor is over $12,000!!!! I turned in the fundraising sheet yesterday morning and Nucor matched the amount that had been raised up until then - $6,213.00!!!! Wow what a year! Last year we raised $6,704 total!!! Great Job everyone and thankyou for your help!!!! Donations are still excepted up until the end of the event on Saturday morning the 7th.

Have a great weekend. Yes I know I am getting lazy on the updating, but things are good and we are busy enjoying life!

Tuesday, May 27, 2008 5:22 AM CDT

Well we have had some busy busy days but all good.

Friday Owen went to the Orthopedic Doctor. His AVN is not any worse but not any better. His shoulder is the only spot tha shows slightly more and this is what he has been complaining of hurting more that his legs lately. I will let his physical therapist know to work more in this area. Mostly the xrays showed the white lines of the desiease but his left knee did show some rough edges to the bone versus the nice smooth outline you should see. He goes back in August to recheck before school begins again.

Friday afternoon he was off to a pain ball birthday party. He had a blast but said he mostly took cover as it does sting! He has a couple of good bruises from it. I hate to see bruises but at least these are 'Owen is being a kid' bruises!

Saturday started with 3 of his friends (Dan, Thomas, Sean) arrriving in the afternoon to spend the night. They spent alot of time outside and Owen was giving his new scooter a workout. That was great to see too! He asked for a scooter for his birthday - he has a small 3 wheel one but wanted the 2 wheel Razor. I couldn't believe how well he did, he is so nervous when it comes to riding bikes or going fast but he was looking great!

Sunday morning the boys were up and back outside. Owen took a tumble off his scooter, taking a corner to fast I guess. He has a nice raspberry on his forhead. He was stiff and sore but ok. So I don't want him hurt, but I couldn't help and feel good that he was having 'normal' childhood injuries. Ones he never had from his seat on the couch!! The rest of the birthday crew started to arrive and we were headed to Syracuse with 11 kids. I think the kids had a great time at Lazor Tag. For many it was their first time. I think Chris had a good time too! They got to play 2 games, had tokens for the game room and we had pizza, soda and cake in the birthday room. Back to our house and the kids got to hang out for a few more hours.

Owen was tired when everyone left! After dinner he showered and we went to lay down and watch a movie. I think he was asleep in 10 minutes!

Jake had his first baseball game on Saturday. He had a good time and even hit the ball twice. When he was running from 3rd to home on a hit he was so busy staring at us and grinning ear to ear I thought he was going to fall! The little ones are so funny to watch as they are just hanging out in the field and chatting up a storm. He did go after a few balls though so he was still paying some attention.

Monday we went to the parade. Jake was walking in it for baseball. Ty was getting restless for it to start but then it finally started and was quite excited to retrieve some candy thrown. He did not like the loud fire trucks, I had to help cover his ears when they came by. After the parade I asked if they wanted to go to the Duck Derby but they were ready to go home. I think Owen was still tired from the weekend and Jake wanted to go play at Grandma's.

We spent the rest of the day in quiet mode and just enjoyed the beautiful day. Monday night we went to the movies to see Iron Man. It was good and the kids loved it. Tyler thought some parts were hysterical and was just cracking up. He had the rest of the theatre laughing!

So yes another busy weekend. The next couple of weeks are busy with activities and last minute meetings for Relay. We opened the pool this weekend but it will be a bit before there is any swimming- Tyler is ready to go now!! Although it is a little green and a little cold! Soon enough it will be ready!

Have a great day!

Thursday, May 22, 2008 8:41 PM CDT

Happy 11th Birthday Owen!!!!!

How happy are we to be celebrating a birthday with Owen and celebrating it in the off-treatment seat! We are seeing alot of improvements in Owen's attitude as he settles into more confidence. There is still alot deep inside him and will probably will be for along time if not forever.

But TODAY WE CELEBRATE! Happy Birthday Honey you deserve it!

The phone rang off the hook tonight with birthday wishes for Owen - thankyou everyone! He celebrated with a party at school, and celebrated with Darren on Tuesday! Thankyou for making this a wonderful birthday week!

Tomorrow he is off to the Orthopedic and we can hope Dr. Palomino can give us some good birthday news on his AVN disease.

Thankyou everyone for your Relay for Life Donations! Owen is rising up and is in 2nd place now for individual fundraiser. Nucor is #1 right now. And the #1 Individual is another Nucor employee who is battling his own battle with Cancer right now. We appreciate all your support!!!!!

Sunday, May 18, 2008 4:31 PM CDT

Where to begin... it has been days of celebrating and having fun!

Friday Owen went to school 'so they could meet there state aid quota' haha, and walked into a surprise party. He was very happy to be with all his friends and celebrating. They all made him wonderful cards congratulating him on 'kicking cancers butt' and welcome back! Yes we hope this is the end of missing school except for routine doc appts. Owen called me on the way home to kid me about 'lying' to him about why he had to go to school!!! But it was a good lie and wasn't he surprised!!! He was beeming from ear to ear and so glad I think that his friends are there for him and supporting him for what almost 5 years now!!!!

Friday night he had his friend Sean spend the night. They get along so well and I don't think they stopped talking once!!! Sean stayed right through the next day until late afternoon and they played and of course video games galore!

Saturday Jake had Soccer practice. He is much more attentive this year and listening and trying. I think he was just too young last year for sports! Maybe that is school too... he was 5yrs 2months when he started and he is an immature boy (hmmm aren't they all???) We'll see, he may be just the kid that requires extra work.

Saturday night we headed to Rochester to Owen's favorite Restaurant Bugaboo Creek. Papa Fred and Grandma Lea met us there. It was quite busy - so different from our normal stop there for lunch during the week or dinner when we have gone before. Tyler was scared of the talking buffalo this time for some reason. He glued to me and would not sit in his chair for the longest time and just wanted to leave. They the food came... and just like that he sat down, ate and then 'liked' the buffalo and wanted him to talk more!!! He generally likes character things so I was shocked it made him nervous. We surprised Owen with the birthday cake surprise. The staff comes out and claps a birthday song and he got a double chocalate birthday cake!!! I told them it was a celebration and birthday cake. Owen was surprised again and said 'what else you got mom... that's two surprises this week!' You deserve it O!!!

This morning we were up early and headed off to Carousel Mall for the 2nd annual memorial for Shannon at Build A Bear. They boys enjoyed making their animals and Owen had fun seeing many of his friends there. One of his good buds Dominic was there and Miles all the way from Pennsylvania! It really is a cute idea and you get caught up in the whole experience - I think it is as addictive as clothes shopping for myself! Owen created Bat Hound (a dog and the 'new' batman suit) Tyler created Elephant ( if you didn't guess an Elephant) and he chose a High School Musical Tshirt and shorts. Jake created Elliephant (yes another elephant slightly more creative on the name) and choose a Harley Davidson jacket and Chaps.

Anyway we escaped with some cute things and headed off to grab some lunch. A ride on the carousel of course and then we did some shopping for Owen to get some ideas for his birthday on Thursday. I told him he can either have a surprise from me (bought in auburn) or he can come back and pick out something on friday after his doc appts. He is meeting with the Orthopedic friday for more tests and check on what his AVN (bone deterioration) disease has done since stopping steroids. He opted to pick out his own, although I told him I would buy NO video games!

So now I need to rest! It was a busy but very fun weekend for everyone. I think everyone will sleep good tonight!

**** Only 20 more days to Relay for Life - Owen is half way to his goal with 1300.00 and Nucor total is over 3000.00 right now!!! Check above for last day to hit the Nucor Matching Funds! ***

Thankyou and have a great night!

Thursday, May 15, 2008 8:47 PM CDT

Its official!!!! Owen had his port removed today and he is DONE with cancer!!!! It was an awesome day and Owen could not have been in a better mood! See the picture page for the before/ after and the big smiles!

He was very sore after the surgery and took quite awhile in recovery but that is ok - I am sure part of it was nerves and part his low tolerance to pain now. There was another girl in recovery with him who just had her port removed as well so it was a very happy recovery room. This officially removes Owen from the MRSA list as well. The thought was that it was on his port and until that was removed he had to remain on quarantine around the other kids with low immune systems. Now he is free to roam the play room and visit freely on 7H!!!! He also got the Ok from Dr. Ratner to play in both the paint ball party and his laser tag party. He needs to 'be careful' especially in the paint ball. Anyone hits him in the chest has to go to the penalty box he said! So Owen was really feeling great!

He did NOT get the bone marrow test. They were getting him in a little early today as someone did not show up and I told the nurse to call 5C to tell Dr. Kennedy as she was doing the bone marrow. In recovery I asked about it and they sent a nurse to come back to talk to me. They had paged the doctor but must have entered the wrong code as she called back to the OR and they had no idea why she was paged. She wasn't suspecting 3N as Owen wasn't due till 11:15. Owen was wheeled off for the surgery and by the time they found out the error, the doctor was in a meeting and Owen was on his way out to recovery. My eyes whelled up with tears, I was so upset. The nurse was very sorry for the mixup. She said it hadn't been on DR. Ratner's form. I said no - It wasn't mandatory, I WANTED IT, for my sanity and Dr. Cherrick agreed. I will have to talk to Dr. Cherrick when we go in June, but I don't know if they will do it now. I just need it. His blood work is fine, but blood work shows it last and I guess I just need to hear the words that his marrow is clear. In my head I know that his marrow has never shown the cancer during the relapse aside from the couple of immature cells that turned out to be fine, so chances are it still is, so why do I NEED this test? I just do.

Tomorrow Owen will go to school for a little bit in the afternoon. The kids wanted to give him an off treatment party. This group of kids have been with him since it started and have been awesome in supporting him. How wonderful of them to recognize what he had done! Owen didn't seem suspicious that he had to go in, but then I heard him on the phone asking a friend if they were giving him a party because he had to come in. I quickly jumped in and told him it was for a state aid quota. If he didn't come in for a little bit then they would miss the attendance number and lose out on some money for aid. That seemed to work! Great idea Mom!!!! So I think the surprise is on!

I am limping along. Wednesday was a very painful day. I ended up leaving work I was just exhausted from the pain and came home to rest. I was in bed that night at 8 and I think asleep at 8:05!!! Today was better, more itchy than pain. At first I though it was due to being on just a high for Owen's port removal but I only had a few rounds of pain. One this afternoon for about 15 minutes and then one tonight. So maybe I am through the worst of it. I just have 4 marks from it. One really nasty one and the others are just red spots. My cheek and eye are swollen, chris 'lovingly' calls me the Elephant Woman. I have seen pictures on the internet and it could have been a whole lot worse!!!

Tyler has had some bad days at school, and then has turned around the last few. His blood work shows he is still low on thyroid so he is not getting enough of his medicine. We have been putting it in drinks and food, but he may not be getting it all. We have opted to have him take the pill orally and he is not too happy, but is doing okay with it. This will guarantee he is getting what he needs and then we can once again rule this out of the behavior cycle. Low thyroid should make him sleepy, which I guess if you are tired you can get very irritable. So hopefully this is it!!! He is exhausting when he is in destructo mode and won't listen.

Jake has been doing well and full of it. He loves his baseball and soccer. He is really working hard at it. He still struggles with school, but has quite willingly gotten into a routine here at night were we review all his words and numbers. So hopefully this will pay off!

I guess thats it.... we now start down the road of normalcy. No more living in fear of fevers. I don't think I can say we will now live without fear, as that will always be there under the surface forever I think!

Have a good night - we are a happy household here!!!

Tuesday, May 13, 2008 7:53 PM CDT

A great day of checkups for Owen. We met with the surgeon today for a review of the surgery on thursday. Basically it will be one incision where the actual port is and they will pull it down and out of his vein. The original surgery was two incision to place the port and the other to insert it to the vein. He may or may not be up to school on Friday. Doc said he recommends he stays home since he is getting a Bone marrow too, but if he was up to school - by all means he should go. He said this right in front of Owen so who wants to bet that Owen will not be up for school on Friday??? Can't give him an inch... He can not have any gym for 2 weeks, PT is fine. The surgery will take about 20 minutes.

Next off to Dr. Cherrick. It was a nice and quick visit. Blood was drawn from the port - so the LAST port access. His counts were good so he did not need to do the pentanamine breather (pneumonia prevention). He now has a prescription for Bactrim to take on Saturdays and Sundays instead. They couldn't give him Bactrim before because between that and the chemo lowered his counts too much. He will continue to take this med for quite a while. We realized when we were here that the 2 weeks of no physical activity falls on a paint ball birthday party on the 23rd and his laser tag party on the 25th. Owen started crying and wanted to postpone the surgery. We know that is not a choice. Dr. Cherrick told Owen to give Dr. Ratner the sad look and he may ok the laser tag but paint ball probably not. So we will need to wait until thursday to see if we need to reschedule his party.

So now that Owen is ALL done - I guess it is my turn to fall apart. I started on Saturday with a small sore on my chin. I figured it was a pimple coming even though I have no idea the last time I had one of those! Well this spot kept growing and was very sore. Another developed on my cheek and one just above my ear. All of these on the right side of my face. Today my ear kept having sharp pain and it would go right across my cheek. It was VERY painful. I thought maybe an ear infection and it is causing an infection on my skin to??? I asked Dr. Cherrick to take a peek at my ear but she looked at my rash and said - I think you have Shingles. Needless to say I called Urgent Care Center in Skaneateles and was able to get in. They believe it is Shingles or Impetigo. Shingles is really an adult version of Chickenpox. Basically the chickenpox from when you were young lays dormant for years and then flares up. Impetigo is a bacterial infection usually caused from scratching an insect bite or a cut or scratch getting infected. So they are leaning towards Shingles since it is only on one side of my face and has alot of pain with it. I am on antibiotics for both - 7 pills a day! Shingles can also be brought on by Stress - not that I have any of that!!!! Dr. Cherrick said I do NOT have to worry about Owen. He is no longer immune suppressed and done with treatment. Normally shingles can be dangerous to children with leukemia. So there is a big relief!!!

The doctor asked if I needed pain medicine and I said no - Tylenol or Ibuprofin is fine for me. But I wish I had said yes now!! Tonight the pain has been pretty intense at moments. It is like someone stabs me in the ear and it shoots across my face. I stop dead in my tracks when it spikes! Hope this doesn't last long!!!! I am checking the internet to see what sort of fun I am in for.

Oh well - I will survive and Owen is now officially OFF TREATMENT!!! He wants to go to Bugaboo Creek to celebate this weekend. He is very entitled to this celebration!!!!!

Monday, May 12, 2008 5:18 AM CDT

Happy Belated Mothers Day!!! Hope you all enjoyed your day of honor and spent an enjoyable day relaxing (LOL) and enjoying your children!!!

We had another good weekend. Saturday we had a garage sale at my Mom's. Only Owen came as Jake and Tyler would have ended up hauling everything back that was going for sale in toy area!!! Owen had an awesome day! By the afternoon the neighborhood kids were out and Owen went out to introduce himself and then he was off playing the rest of the day!!! They were all over the neighborhood. Owen even swung from 'the vine'!!! They have a vine hanging in a tree, they climb up about 5 foot into this tree and then swing out on this vine - tarzan style!!! Yes Owen did this, I had to go up and witness it myself!!! I think he needs to go spend more time at Grandma's house and get all theis great outdoor activity! He is all for it too, he had a blast playing. We felt so good watching him play and enjoy himself. We couldn't help but feel the pangs of sadness as you watched him half run and walk with his hobble walk as he headed off. Cancer has certainly done its damage to his legs, we can only hope that ending chemo, getting PT and more of this great exercise will help him regain some of his strength. He was very upbeat though - 'If I keep coming and playing here - I will be better than before won't I?' Wouldn't that be great!!!

Saturday night he was off to his friend Sean's birthday party at Laser Tag. Chris and I went out for dinner for our 12th Anniversary! Wow 12 years I can't believe it!!! Yep 12 years ago we got married in a snow storm! Remember the snow storm of mothers day? That was our wedding day. I guess the snow was good luck, we have had alot of ups and downs and challenges in our marraige with the life of Cancer but we are still standing. Happy Anniversary Honey! We finished the night at a surprise birthday party for a friend. We were headed home around 11 when the phone rang - it was Owen. He was suppose to spend the night at his friends but he was achy and exhausted and just wanted to come home. They played 6 games of laser tag - plus all the running and romping at Grandma's - I bet he was tired!!!

Sunday was a day of running to the Mom's houses and cleaning - yeah I didn't get to escape that. Although my hubby did say from the recliner - 'Honey you shouldn't clean on mothers day...' Hmmm - relax as I look at the bomb that went off in my house.. don't think so... hmmm 4 boys (Chris is still a child at heart :-) ) to help clean it.... oh well!!! We went to Papa W's and Grandma Lees late Sunday afternoon so it was nice sitting on the lake and skipping stones - something I think the boys never grow tired of.

Well tonight is the LAST 6MP dose!!! The LAST of the chemo!!!! Tomorrow he will have his Port Accessed for the LAST time and thursday his port will be removed! This is a week of celebration! He told me friday he wasn't feeling good and wanted me to take his temp. I looked at him and said - listen up, you are getting your Port out in a few days and you will NOT in any way shape of form - spike a fever and land us in the hospital for a last hurrah!!!! That perked him up - my port is next week? Yeah!!! and the thought of not feeling good was gone. I think this will do wonders for him, relieve some of his stress and worry and let him start relaxing and enjoying life. We have seen great improvement in his moods as we approach Off Treatment day!

Have a great day!!!

Wednesday, May 7, 2008 8:27 PM CDT

Good days continue. Today was a hectic day. I picked up Jake from Karate, home to pick up Ty and Owen and off to Jake's 1st baseball practice. He did ok, he was very cute and very eager so hopefully he will get into it. He is in both soccer and baseball this year. He wanted soccer and we wanted him to try baseball as he was too young last year, so we'll see how it goes and if he wants to do both.

After practice it was back in the car and whip off to Owen's Spring Concert. It was a great concert and you could tell he totally was enjoying it. He told me his favorite was the last one but it was a surprise. I thought all of the songs were great and upbeat with a little bit of dancing and moving, so I thought maybe they sang out of order than what he thought. Then the last song came on... all Queen songs... We will Rock you, another one bites the dust, We are the Champions etc. a little medley of a bunch and the kids were rocking! They loved it!!!! Owen looked so good and was smiling up a storm it was just wonderful!

He has taken the LAST of his methotrexate pills and only has 5 days of 6MP left. Wow I can't believe it... 5 more days... course I will be feeling much better after his bone marrow aspiration next thursday when they remove his port and hear the news it remains clear!

I went to Mira's wake tuesday night and it was very hard. It was great to have the Mom's there from Mom's night out and not have to do it alone. Keep the Brouwer family in your prayers as they have a long road ahead of them in healing from this horrible tear in their family... Mira will be missed by everyone.

Relay for life is going into full swing. We have several people on the team but are looking for more - especially those middle of the night walkers! The Nucor team is off to a good start with over a thousand raised. Last year we raised $6,700!! Nucor will match whatever is raised, so lets put that offer to good use! I have Luminara bags for $5.00 as well if you would like to purchase one in Memory or Honor of a loved one. These will be displayed with glow sticks inside during the Luminara Ceremony at 10. You can decorate your own bag to make it extra special or I can fill it out for you. Click on the Link above to join the team or donate - or you can go through me. The Relay is June6th & 7th so it is only a few weeks away.

Have a good night!

Monday, May 5, 2008 5:21 AM CDT

We had a good weekend. Our plans had been to see Iron Man at the drive-ins as I ddin't want to expose Owen to the theatres with him fighting something. Alas the weather did not cooperate so hopefully next weekend.

Sunday Owen went turkey hunting with Uncle Steve. 4:30am the alarm went of... I 'touched' Owen's shoulder and he jumped right up and was chatting a mile a minute on cloud nine. They did see lots of turkeys but they were either hens or hanging towards the road where they couldn't shoot. He was dragging pretty hard by the time they came home!!

Owen went over to Samanthas in the afternoon. They went fishing in the pond and caught some sun fish. Sam caught a small bass too.

Tyler, Jake and I went for a hike on the Cayuga County trail. They had a blast. We did see some deer and the horses whose field runs along next to the trail. We collected a whole bag of goodies on our trip - rocks, sticks, nuts, and flowers.

Back home and we played outside it was starting to warm up finally. The boys cruised around in their cars and I gave Nikki (the dog) a much needed brushing and clipped some of her long coat. I am no groomer but she still looks much better.

Golf is starting this week, but I will miss the first night. Luckily Pam told me that Samantha's and Owen spring concert was wednesday! Good thing I have Pam! LOL

So all is back to normal. Owen did well with this little bug and will be back to school today. He had a good run, probably 10 tens in a row! Tomorrow is the LAST of methotrexate pills!! He will then just have 6MP through next monday the 12th. I was able to get the pre-op appt switched to tuesday at 2 before seeing Dr. Cherrick so that is good, only 2 trips to syracuse next week.

Have a good day....

Friday, May 2, 2008 7:06 PM CDT

All is well. Owen did end up sick. He started sounding like a seal while he was sleeping wednesday night. He had a low grade fever of 100.3 that went up to 101 and then started to come down again and just felt crappy. The doctor had us come in to be checked. She figured, knowing Owen he would end up spiking a real fever at night and we would be in the ER, so we are very thankful for going in that afternoon!!!! They gave Owen a 24 hour antibiotic and took blood cultures, and a strep test. I have not heard the results so I assume they were negative.

So I did make Mom's night out and was very happy to be back (I have not made it since January)! We had a great time and alot of laughs as usual but alot of sad moments too as we talked of Mira. Her wake is tuesday and funeral wednesday. I am planning on going to the wake. It is going to be a very hard day. Please keep the Brouwer family in your prayers.

I arrived home to some more bad news. I checked John's site and they received news of the worst nightware. John had indeed relapsed, and there was leukemia in the bone marrow. They do not feel there is anything else to try except possibly some experimental treatments. The family needs to decide what direction to go, some chemo to get John in remission and hope his donor cells kick in and start fighting, or an experimental road. But they have been told their is only a small chance. John is a senior this year and plans to go onto college. Wow talk about crashing a teenagers dreams.... I have grown to love this family with our connection in our children sharing the same mixed leukemia and path towards the cure. Glenda and I exchange emails and share a bond that only cancer mom's can understand. My heart is breaking for them and wish they were not so darn far away in Oregon so I could be there for them. Please they need everyones prayers they have some tough days ahead and need everyone....

Hug your family extra everyday, they are so important and life can be too cruel, appreciate everything you have.

Wednesday, April 30, 2008 8:44 PM CDT

Owen's port is scheduled to come out on May 15th!!!!! I got the letter from the surgery center today! I am so excited, I just want that gone. I know removing the port doesn't mean he is cured, but I can hope that he is, and it is one less issue to deal with. I keep looking at 'off treatment' as the miracle and we are done, but as my fellow caringbridge sites have shown we will live and walk on egg shells forever. But to me it is just a big relief to know we have made it this far and are going to try and embark on the road of normalcy once again.

So Owen will finish his last chemo pills on the 12th, visit Dr. Cherrick on the 13th for a checkup and possible pentanamine breather. He will have his port accessed for the LAST time for blood work. Wednesday the 14th we have to go for a pre-surgery consultation, and then Thursday we arrive at 9:45 to the surgery center with surgery scheduled for 11:15. I am hoping I can get the pre-op date changed to tuesday before Dr. Cherrick. We have 3 days in a row to Syracuse and hmmmm at almost $4 a gallon that starts to take a pretty good chunk out. His visit on 5C should be quick with just a checkup and bloodwork this month, and the pre-op surgery visit is usually a short one, so one day sounds better for both than two.... we'll see what I can work out.

Owen is quite excited too!! And before his birthday (22nd), which is what he was hoping for. One of the best birthday presents he can get!!!!! So anyways... did I mention we are excited??!!!

Tonight I had my golf league meeting and plans are to start next week... yikes I hope the good weather comes back! The boys came with me to Curleys and ate dinner and played some video games. Tomorrow is Mom's Night out and fingers crossed I will make it. I think we are all looking forward to being together, we are all feeling the loss of Mira. I have not been in several months as Owen has gotten sick at the beginning of every month! So far so good, but I better say that quietly!! He was complaining of a sore throat today, so we are hoping that is not turning into anything.

Have a good night!

Tuesday, April 29, 2008 5:36 PM CDT

Things continue to go well here. Owen is complaining of alot of pain again, more all over than just in his legs. He also has been having alot of head pain, he says they are not headaches but just his head hurts and he can't think. This generally comes when he has to do homework, so again we are at the dilema of: Is it him trying to get out of something he doesn't want to do OR is it real? His counts monday were good so his chemo pill dose remains the same. 2 more weeks of pills!!!! Haven't heard a date yet for the surgery for his port removal so hopefully we will hear soon, or I will ask again at his May 13th appt.

I received some more bad news. A family I follow out in Oregon has just found out their son may have relapsed. I have gotten to know this family through emails between the mom and me and have followed them for a few years now. John is a 'twin' for Owen. He has the same leukemia that Owen does - the mixture of AML/ALL. He went through standard AML chemo, relapsed and went through a bone marrow transplant. He is now off treatement. He also has the AVN disease (deterioration of the bones) and has had several surgeries for this. Owen and him seem to follow the same paths. He has had several masses growing and a biopsy has confirmed leukemia. They had a bone marrow aspirate today but it will take about a week for the results. Please keep John and his family in your thoughts and prayers. Their link as at the bottom of the page.

So as excited as we are to be approaching 'off-treatment' it just sucks that you never lose the fear of 'what ifs'. The roller coaster ride and scares over every health issue will never go away......

Saturday, April 26, 2008 8:45 PM CDT

Today was a good/bad day. (Owen is fine)

I went this morning to an ARC conference in Syracuse for kids with disabilities. It was all about inclusion and how to help your child have meaningful relationships with other children. It was filled with information for the home, school, and just recreational activities. I thought it was really good. I came away with many ideas and thoughts for home and the school. Tyler's school is very good and they do alot of the ideas mentioned but I think I have a few ideas for them as well. It was suppose to go into behavior tips and techniques too which I was very interested in but they ran out of time. I asked the speaker if she would be doing anymore on this topic somewhere else but she is not except for in schools, not public. She gave us plenty of reading resources but I do much better in a conference type setting - reading a book?? whats that?? I am lucky if I have time to read the paper!!! A friend Jessica was there who is a Mom from Auburn of a down syndrome child who I know very well and she is going to discuss it with the Gavras center as they run things like this for parents and perhaps they could get her to come speak there, as that is a school!!! So my fingers are crossed.

I also ran into one of the Mom's (Judy) from our Mom's Night Out group. She told me she spoke with Christine the mom of Mira last night and things weren't going well for Mira. My heart was breaking. I arrived home to an email for the Mom's Night Out Group to find out Mira had earned her angel wings around 4am today. I can't tell you how hard this hit me. I follow many Caring Bridge sites both local and far away. Some families I have come to know very well although I have never met them. But Mira and her family were people we knew, met, spent time together in the hospital and at the MOm's night out. This hit harder than I can tell you. Mira was a beautiful girl and one of the kids that Owen really connected with. He loved MIra and helped her feel comfortable, he was the big brother. He just melted when we ran into her. I have not told him. I didn't tell him when one of the other kids he became friends with (Andrew) passed either but then he found out later and was upset I didn't tell him. I am caught between a rock and a hard place.... He is starting to feel confident and seeing the light at the end of the tunnel. He found out Robin on Good Morning America had cancer and it just made him feel good to see her on TV and know that other people have cancer and they are doing fine. So do I crash him to tell him about a little girl he adored???? I think I will sit on that thought for a few days.

So please keep the Brouwer family in your prayers. They are still in Florida and will be until they can make arrangements to bring Mira home. My heart breaks for the pain and heartache they are going through right now. I can't tell you the number of times I just start crying today. The boys have caught me and I tell them I just yawned... they went to Papa Freds and Grandma Lea's to spend the night so that is good, I don't think the yawn was going to keep working.

WHY WHY WHY???? Is there a reason? Is there an answer to why these children have to suffer?

Thursday, April 24, 2008 5:54 AM CDT

Things are going well. Everyone is healthy and back in school. Issues are more on the mental side. Owen is having a hard time getting back in the groove of school. He is forgetting his homework, getting stressed over forgetting it, even stressed when doing it. It takes time to get him calmed down to 'think' about what he is doing and to not panic if he doesn't understand the first time he reads a question. Him and Jake are at each other pretty constant and that is draining on all of us. It is both of them. Owen has 0 tolerance for Jake and and anything Jake does is wrong. Jake has 0 tolerance for Owen touching anything that is his and reacts to everything Owen says.... Then there is Tyler walking in the middle and just wants to hang out and it is WWIII. This is TV turn off week which seems to have added to the stress, usually this is a week I totally enjoy as there are NO video games and we get to play alot and do things, but this year seems to be more time to fight!

I want to ask everyone to say a prayer for a family from Ithaca. A little girl that Owen adored was in Florida on vacation when she got pneumonia. She is in PICA right now fighting for her life. She has no counts and her breathing stats are down in the 70' and is on a ventilator.

Mira:
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=mirabrouwer

Mira's Mom is part of our Mom's night out group. Their family needs all our prayers to pull Mira through.

Saturday, April 19, 2008 9:06 PM CDT

Things are going great at the Wawrzaszek home. Wow I love to say that, it seems like it has been a while since those words have been spoken!

The weather has been absolutely great the last couple of days. Today was 80!!! Wow I love it. This morning was spent taking the winter clothes out of the boys rooms and filling them with summer shorts and shirts.

We then went to Dicks and got the Rocket fishing rods and headed up to Carters camp to fish off the dock. We didn't catch anything but enjoyed just sitting in the sun and doing nothing but talking and relaxing. It has been too long since we sat and just did nothing but enjoying life. Jake and Tyler waded in the water crawling on the rocks, brrrrr it was a bit to cold for me to put my feet in the lake!!!! We headed home for a bit and I hauled the chairs for outside up from the basement. I am in full swing to start enjoying the outdoors.

Then we packed up and headed to Reesee's to play mini-golf and have some icecream. Everyone had the same thoughts as us I think. We ran into Grandma T and Jakes vest friend Thomas. After that we headed home to eat dinner, yeah a little backwards, dessert then dinner... oops. Oh well it worked out.

Tomorrow we plan on going back for some more fishing. Chris is going to come too so we might take the paddle boat out so we can hit some deeper water. We are looking forward to another day of sun and outdoors tomorrow!!

Spring break is coming to an end. Jake is itching to get back to school, he misses his friends.

Have a good night!!!!!

Tuesday, April 15, 2008 8:53 PM CDT

We had an awesome checkup!

Owen's port was accessed an he received his LAST vincristine chemo!!! Since this is the LAST time he needs chemo by infusion (through the port) he is cleared to have it removed!!!!!!!! He still has 4 weeks of pills but no more chemo in the port! What a great feeling. So the surgery office is being contacted. Owen will probably have to meet with them and then the surgery will be scheduled to remove the port. This will mean no more having to call when he has a fever, no more fear of infection in the line - we are sooooo excited. It may also have been his LAST pentanamine breather. This is the medicine he receives to reduce the change of pnuemonia. If his counts are still good on his next visit (May 13th) he can switch back to bactrim (a Pill) for this instead of the breathing medicine which he hates. Bactrim always caused his counts to drop, but with no more chemo pills after May12th he may beable to switch to the pill form. Can I tell you what an exciting day it was. Owen was on cloud nine leaving the doctors!!!!!!!

We have had good days. I took yesterday afternoon off and we went over to the FunZone at shopping town to play laser tag. We met our cousins Ben and Brett there and had a great time. I went into the laser tag game too incase Ty or Jake had trouble but they had a blast. It is in the dark with some black lights going and you run around in laser vests and guns and try to take out the other teams - you are in different color vests. I was right into it! We can't wait to go back again. I lost Ty and Jake a few times in the maze of hallways but I would always find them again and they were just having fun and not scared at all.

Sunday Owen went to hit golf balls with Chris and is ready to take on golfing seriously this year. I took Ty and Jake to the mall to play the glow-in-the-dark mini golf and then to visit the fish at Bass Pro. So everyone had a great day.

I am planning on taking friday afternoon off too, not sure what the plans will be yet for that day. Sounds like it will be beautiful outside so hopefully we can find an outdoor activity!

Well we will all sleep well tonight with wonderful dreams... we are almost at the end of the tunnel.......

Yippee!!!!!!!

Sunday, April 13, 2008 8:21 AM CDT

Things are going well. Owen was in school ALL week!!! I let him have Thomas come over last night as a celebration He was going to have another friend too (a big celebration
but Tyler spiked a fever at 6pm and we cancelled bringing someone else into our house. Not sure what was going on with Tyler - he seems fine today but he sure didn't feel
good last night.

Owen starts his LAST 4 week cycle this tuesday!!!!! Yeah on the last month of treatment. After this he will continue with monthly doc appointments but no more chemo!!! I can't believe it is almost here!

On to Relay for Life - we are starting up preparation for the event this year. It has moved this year and will be at Auburn High School June 6-7 from 6pm to 7am. We are looking for people to join our team!!!

Walkers will be given 1 hour slots. The opening ceremonies will start at 6pm and then the Survivor / Caregive Lap. If you are a Survivor and want to participate in this lap let me know I have forms for this.

T-shirt deadline is May9th. So if you are planning on joining the team please let me know and give me your T-shirt size.

Camping is allowed. Tents will be in the center of the track and campers in the parking lot. More information on this will be coming as far as electricity and fire pits. We will be camping again. Last year we didn't roll into bed until 4am - this year with it ending at 7 instead of 10 we may just pull an all nighter! There are plenty of
activities and fun going on at all hours to keep you going!

You can join the team, make donations or purchase any of the below items directly off the website (link is above or at bottom of Owen's web site). If joing the team - you do not have to pay the registration fee - click you are paying off line. Nucor has paid for the team. You can also print any donation forms off line if you do not like
purchasing online. And of course you can go through me! The Nucor team was the top fundraiser last year with $6,700!!! More than 1/2 raised by Owen!!! That was awesome and we would love to do it again this year!

There is also a team game challenge. For each team to come up with an activity to perform during the relay and award prizes. We only participated in the games last year but Owen is already cooking up some ideas on what we could do!!! I am sure it will be messy - especially since his favorite last year was the pie eating contest!

Donations are already starting to roll in and we thankyou!!

There are many area's of fundraising this year:

Donation: Just place a donation of any amount!

Luminaries: Bags (you can decorate your own if you like) to place the track during the luminary ceremony at 10pm in Honor/Memory of loved ones affected by Cancer. $5.00

Sun/ Mood Cards: Cards to hang at area Businesses for $1.00 each. If you have a business that you would be interested in selling these to post please let me know. I have ordered 100 of each.

Cancer Fact Signs: Signs posted around the track with a Cancer Fact along with your name or business. $100.00

Candles of Hope: Used to light the word HOPE spelled out during the luminara ceremony. $50.00
(Both Cancer Fact sign and Candle of Hope = $125.00)

Dansan 12oz. Water bottles. I have labels to wrap around these to post at your area of business. Fill these with dimes - A full bottle = $97.00!!!

We hope you consider joining in on the fun with us!!!!

Wednesday, April 9, 2008 5:29 AM CDT

Things are going well. Owen has 2 days of school in - yeah!!!! He seems happy to be back to normal and being with his friends. He has lots to make up and get back on track.

Last night was the first Relay for Life meeting so I will be updating later with all the info. Only 53 days till the Relay so we will be looking for team mates and donations. Owen and Nucor raised $6,704.00 last year!!! how awesome is that. (Owen was over 3000 and nucor matched!) Lots of things this year and even a team game challenge so we will be thinking hard of what our game will be - I am sure with Owen behind this it will be messy!

More later....

Monday, April 7, 2008 5:20 AM CDT

Things are going well and we had a great weekend!

Friday I let Owen have his friend Sean over for a couple hours. They spent most of it in his room hanging out. Owen wanted Sean all to himself (no sharing with the brothers) since he has not had any friend time in a while. Jake and Tyler were bummed out but I finally got them to realize they now had play time with me.

Saturday Owen was asked to go to the Syracuse Lacrosse came with Sean and I didn't want to say no, he is so depressed over being home for a month so I left it up to him. He knows his limits and he opted not to go. He was nervous of the walking up to the dome, as he was still not breathing 100nd still had some pain in his shoulder (where the pneumonia is).

Saturday night Chris and I went to a Nucor event - Casino Night. It is a great time. It is fake gambling. They give you 500 in fake money to gamble. Its great to gamble with money that is not yours!!! Never in my life would I be putting 100 down on a bet, by the last hand I was betting 1000!!! In real life I look for the $2.00 table LOL and even hate to lose that!

Sunday Tyler and Jake and I were outside early chalking up the driveway. Oh it felt so nice to be outside. It was a beautiful weekend. Owen was invited to his friend Sam's house. He was so excited to be going to a friends and he felt 'great'!!! That was awesome to hear too. So I dropped him off to Union Springs and then headed to the Owasco Park with Tyler and Jake. The playground was packed, everyone was enjoying the day. Back home and we went for a nice walk to see the goats, but there was none, just some chickens. I even got some yard work done, dog dutie, not my favorite task.

Owen arrived home around 5:30 and was just beaming. He had a great day. They played outside most of the day too riding scooters. He said he was nervous at first because he knows he is not very good on the scooter and didn't want to be embarassed but he did great! They even took them all the way down to the boat launch. He said he knows he'll be sore today from all the exercise but it will be a GOOD soreness! Yes it will!

We enjoyed a nice cook out and everyone was ready for bed after a day of sunshine and fresh air. Owen had a restless night though. Again I think part is due to excitement of returning to school today, part is due to his body being use to staying up late when he is sick. He'll get back into the swing of things after getting up early today! I told him no naps after school today.

Tyler did well at his visit to the doctor last week. He does have to increase his levoxyl medicine for low thyroid. Part might be because we have been giving him medicine in pudding. Milk products and levoxyl don't allow the thyroid to absorb into his body correctly. So we are looking for a new way to give him his meds. He is guaranteed to eat the pudding but now always applesauce or other snacks. He doesn't even eat his breakfast all the time so sneaking it in there doesn't work. We are figuring it out, but the pudding was nice. He doesn't need to have blood work done for 6 weeks now and he doesn't need to go back until the end of July. He has gained 3 pounds which is normal. He was burning everything off with the hyper thyroid. Just need to watch him and not let him gain alot. He eats pretty good though and not alot of junk. He eats a couple bowls of broccoli a day!! Loves it!!!!

Sure hope spring is here - I have the fever after this weekend and the boys sure loved being outside again. We are looking forward to enjoying good weather and good health!!!!!!!!!!!!!!!!!!!!

Have a good day!

Thursday, April 3, 2008 4:34 PM CDT

We are home!!!!! Hopefully to kick this for good this time. Owen is on an antibiotic another 4 days.

Wednesday, April 2, 2008 11:05 AM CDT

Wednesday night update:
We are still here. Dr. Sill wants to watch Owen another night. The xray from last night shows start of pnemonia in his upper lung. He just wants to make sure it does not progress. Owen is on Zithromax now for the pneumonia. I hope this gets it once and for all, I am happy to keep staying if they can 'fix' Owen and get him back on his feet again. He is so tired of being sick. He has actually been up and very happy and like him ol' self joking with the nurses since about 7 and I love seeing that. I miss my Owen...

I will keep you updated!

***********************************

Owen has been admitted. NOt sure what is going on at this point.

His WBC went up from 2.9 monday to 7.0 at the ER. His hemoglobin dropped from 8.3 monday to 7.0 in the ER. So they batted it back and forth on what to do. He needed to get blood at 5C tomrrow that was for sure. The fact that he had the chills and shakes concerned them, but the big jump in the WBC could both point to an infection. The jump could also be due to his chemo being held for a week and his immune system kicking in. In the end they decided on to err on the side of caution and keep us. It was 11pm now so they would need to do some moving of the beds in 7H to accomodate his needing the private room. So when all was said and done it was 4am when we arrived in our room.

The Dr. said he may still send us home today. Most likely will give him another 24 antibiotic to cover him another 24 hours later tonight and that would cover him until the results of the cultures returned.

Owen spiked another fever this morning. He is getting blood righ now. All I know is he is so depressed over not being able to shake this and get back to normal. He tried to stay at school as long as he could yesterday and was just sobbing when Mom picked him up. He didn't want to leave but felt awful. I wish they could just find a source, find something.... get him back on track. Amonth is just way to long to be down.

Tuesday, April 1, 2008 5:54 PM CDT

Well I thought Owen was on the mend... his counts were back up yesterday over 1000 so he headed into school and was happy to be back! He kept getting sad all weekend that he hadn't seen anyone in almost a month and he just wanted to hang out again. Today he headed in and by 1 he was on his way home with a low grade fever 100.5 and the chills. He took a tylenol when he got home before he checked with me, I was waiting to hear from the doctor. So unfortunately we needed to wait for the tylenol to wear off. At 3:30 his fever was up to 101.5 with the tylenol, so I called the doctor back. When they called back he was on the way down again 100.9 so they said to wait for the tylenol to be out of his system around 6 and see what he did. So here we are rising quickly, was 101.4, 101.7 and now 102.1 so we are on our way to the ER, just waiting for Chris to arrive home so we can go... hopefully he still has counts and he will just get an antibiotic and head home.

I wish I knew what was going on with him!!!! Why can't he shake this???? He is getting so down that he is always sick and I can't blame him. I will keep you posted...

Sunday, March 30, 2008 7:04 PM CDT

It was pretty much an uneventful weekend so that is a good thing.

Friday night Jake, Tyler and I went to the Bingo night at Cayuga Elementary School. The boys were very happy to be there. Tyler won the very first game!!! That wasn't such a great thing - he picked out his prize - a buble wand and with 15 minutes started asking to go bye bye. He did manage to stick it out and Jake did finally win a game near the end and picked out a Dinosaur coloring book, hmmm dinosaurs what a surprise!!!!

Owen woke Saturday morning very barky coughing. He did sound better as the day went on. Chris and I went out to dinner with Dad, Leanne and Steve to Balloons. Thanks Dad and Leanne!!! It was our birthday dinner for Steve and me.

Today Owen got very sad that he has not seen any of his friends in a long long time. We tried to call a few people to come over for an hour or two but unfortunately had no luck. Pretty soon you will be back in school and back with your friends!!! Tomorrow I have to do counts again. The hopes was he bounced back over the weekend. His immune system might be rebounding but I am betting we are heading in for a blood transfusion tomorrow. He is so pale and his lips have no color at all. So hopefully his immune system is up enough to go to school on tuesday. He needs to go back for his own sanity.

Hoping for good news tomorrow! Have a good night...

Thursday, March 27, 2008 6:54 PM CDT

Owen is making baby steps. His counts are starting to rebound. His WBC today was .8 so still very low and still has to stay close to home but it is an improvement and he is going in the right direction! His platelets are 35 so the boost from the transfusion is helping out and he is climbing up on his own. His hemoglobin was 7.8 - they usually transfuse at 8 but since he is showing signs of improving they are going to let him go through the weekend and retest on monday unless we see any concerns over the weekend and think he is dropping. He had another good day and was out of bed most of the day. Him and Jake are fighting like crazy so another 'good' sign.

More great news is Dejah is HOME from his stem cell transplant!!!! He is still on house arrest for awhile (100 days) but home is the first step to recovery and we couldn't be happier!!!!!

Fingers crossed things are starting to look good, dispite the snow forecast for tonight - I am still hoping spring will show its face very very soon!

Wednesday, March 26, 2008 5:41 AM CDT

Well Owen had 1/2 a good day, so 'maybe' he is cresting the hill?? He felt crappy all morning but about 2pm he got up came downstairs and was talking away! Within no time him and Jake were fighting up a storm, so I guess that is a good sign?! Owen stayed up until 9pm when he started to get a headache again and was starting to ache, but hey 9 hours of up time is more than he has seen in a loooooong time. He was restless last night, probably because he has slept for what 20 days now and his body was done sleeping. We'll see what today brings.

Jake seems to be on the mend. No fevers yesterday just a bit of a cough so he is back to school today.

Tyler had his hearing evaluation yesterday. He is remaining stable. His hearing is just a little below normal. They would like me to start using his hearing aid again at home in the left ear. He uses the FM system at school. So I will most likely need to get a new fitting as it has been awhile since he has had it in, and for any adjustments they might need to make to it. The doctor did get alot of wax out of his ears. His ear canals are so small that it gets trapped deep inside and then just hardens. So Tyler was a champ and just laid still while he went in with a tool under a microscope and got him cleared out!!! He gave him a prescription for some 'preventive maintenance' drops. I can use these 1 or 2 times a week to keep the wax softer and hopefully allow it to work its way out instead of building inside. He does not need to go back now for a year. He was going every 6 months but he feels he has stabalized and doesn't need to be checked unless I feel there has been some changes.

Well SU's season came to an end last night. They just ran out of steam and couldn't hold on for UMass. We'll look forward to next season!

Looks like today is suppose to be really sunny, and we are certainly looking for sunnier days!!!

Monday, March 24, 2008 7:58 PM CDT

Plodding away here. Owen continues to feel awful. He had to go in today for a platelet transfusion, he was at 9. I have to retest his blood on thursday as his hemoglobin was only 8.8 and they transfuse blood at 8. Good news is - he does have monocytes so 'maybe' his system is going to start rebounding???? His WBC was only .4 today so he is pretty much ground zero - no immune system. We keep hoping the fevers stay away. He did have a low grade yesterday morning, last night and again this morning. The rule is over 101 OR more than one low grade in a 24 hours period. So now I know the second rule.... but he was checked over and for now released home. Doc still thinks it is just a viral infection and it is just taking its toll on Owen between his weakened immune system and the chemo he had been getting. All his chemo pills are on hold until his system rebounds.

Then to make matters worse, Jake spiked a fever today. So here we go again..... have to keep Jake and Owen away from each other. Jake has just slept since I brought him home today. Tylers nose is starting to run again. I refilled his prescription today, he took his last dose this morning and I figure I will just keep him on it and hope it does the trick.

WHERE IS SPRING????? This winter has been awful for all my kids and I just need some nice spring weather and open windows and fresh air!!!

Tyler has his hearing evaluation tomorrow morning. He has been improving or staying the same each visit. He goes every 6 months. Depending on his nose will decide if he goes to school after. Jake and Owen are both definately home bound.

We are needing a break here..... especially Owen. He has been sick now since March 6th!!!! He is just burnt and exhausted from this and just wants to feel good again. I posted some Easter pics and as you can see Owen is absent from them, he wasn't up to anything yesterday. As he said it, he liked his Easter Basket, but this Easter 'sucked'. I couldn't even reprimand him for that, because I know it did suck for him.

Hoping for sunnier days ...

Sunday, March 23, 2008 5:52 PM CDT

Happy Easter everyone!

Tyler and Jake are enjoying Easter, but unfortunately Owen is having a rough day. Tyler and Jake were up around 8:30 and thrilled to see the Easter Bunny left their egg trail and quickly followed it to find their Easter Basket surprises. Owen came down around 9 but was not feeling good at all. He did manage to follow his trail to his basket but then only wanted to lay back down and was sound asleep on the couch in minutes.

We did go to Springside for Brunch with Grandma Pat, Papa W, and Grandma Lee. Uncle Steve came out and stayed with Owen so we could try and keep things a little normal for Ty and Jake. The Easter Bunny was there so they were thrilled. Tyler had fun playing peek-a-boo back and forth with the bunny while we were eating. And speaking of eating, holy cow Tyler packed it away. 4 helpings of ham, a big plate of veggies, sausage and watermelon. I did bring a to-go plate for Owen but he has not felt like eating.

Grandma Pat came over after Brunch to give the boys their baskets. Owen managed to wake up for a bit but wasll just was out of it. I got him up and into the shower. He is complaining of really bad headaches whenever he stands. After his shower he was right back asleep.

I was starting to get very very worried, I just couldn't keep him awake. Since he had basically slept all day he had not drank or ate. So I started searching the internet, sure enough dehydration - sleep, headaches, faint feelings when standing. I know it has been too long since the spinal for it to still be spinal headaches, and since he had been at the hospital twice this week and had to get IV fluids I got to thinking he was getting sick from this. So Chris and I are basically making him stay awake and making him drink every couple of minutes. He has gotten about 16oz in the last hour and a pedialyte popsicle and he is already starting to feel better. His urine is dark but not as dark as it was on tuesday so I told him he has to get another 16oz in him within the next hour. So as long as he keeps going and stays awake I will hold off calling the doctor. I was really starting to freak out, but Chris said he would get the fluids in him and then I could decide. So far looks like that is what was wrong he let himself get down on the fluids again.

So drink, drink, drink!!!!!!!!!

Friday, March 21, 2008 7:19 PM CDT

We are walking on egg shells and keeping our fingers crossed. Owen has not spiked a fever today.

His morning blood work came back and his ANC is 386, WBC .6, platelets 19 and hemoglobin 9.2

So what that means is a fever will buy him a ticket into the hospital. Spending Easter in the hospital will crush him and both Tyler and Jake as well. ( I don't think Chris knows how to be the easter bunny!!!) So keep Owen in your thoughts and use your super powers to think good things and keep us out!!!!

His urine was dark again this morning. He needed to get 8-10 ounces in his system in one hour or the doctor wanted him in. He did get his fluids in, and a pedialyte popcicle and Mom even managed to get some crackers and soup into him. His sodium is still low so salt is good for him too.

Tomorrow they all had a birthday party to go to, but looks like it will be Tyler and Jake. I know he will be sad but it is also not fair to Ty and Jake not to go. Technically it is someone in Tylers class, but since he is also our cousin all three were invited. I think it will only be Tyler and Jake seeing the Easter Bunny as well as the mall is not the place for Owen right now. I am torn between a rock and a hard place. I don't want to depress Owen, but I don't want to punish Ty and Jake. Jake asks me everyday 'when' are we going to see the bunny?

Right now I am concentrating on getting through the night fever free.... I need all your prayers to keep Owen home!

Thursday, March 20, 2008 7:27 PM CDT

As much as I love amusement parks and roller coasters - I am ready to get off of this ride!

Owen woke up with another fever today 102.9 Called the doctor and they wanted us in. I ran home packed a bag - to ward off the evil spirits - and headed in. They did cultures both from his port and did a peripherl from his arm. While waiting for his blood work he was hooked up to IV fluids again. The doctor wants to have him drink even more. I am getting about 2 15oz waters in him, which is not enough. He wants 45-60 oz in him especially while this fever roller coaster is happening. His white count remains about the same .8 (was .9 tuesday) and his ANC is hanging in there around 600. So due to being over 500 he did not need to be admitted. His platelets are a concern though. He went from 350 on March 8th to 73 on tuesday and now 31 today. At 20 they transfuse and now we are headed into the weekend. So I have to do a blood draw tomorrow morning to see where they are and he might need to go in for a transfusion. He is running another fever but we have the ok to just give tylenol and stay home. I will be checking in tomorrow.

tomorrow is another day....

Tuesday, March 18, 2008 6:53 PM CDT

Well we left the house at 7:30 and got home at 6pm - wow long day... but a good day.

We had to wait for his blood work to come back as the slide of his blood looked like his platelets might be too low to do the procedure. It came back with an ANC of 650 and Platelets of 73. He is suppose to have 750 anc and 75 platelets. However Dr. Cherrick decided to go ahead - he was close so not to delay his schedule a week. He was wheezing in his lungs so he had an albuterol treatment first to open up his lungs prior to anestesia. We discussed his ups and down with the fever and losing the 7 pounds. Dr. Cherrick is getting him on an albuterol puffer until his cough completely disappears.

So off Owen went and received his very LAST spinal tap!!! Yeah the start of the 'last' pieces of the treatment schedule! After his procedure we went back up to 5C to get his pentanamine (monthly anti-pnuemonia breather). He got Vincristine chemo as well - so here comes some extra leg pain! Dr. Cherrick came in and asked if he was drinking well. I told her no, both his eating and drinking were poor. She was concerned with his sodium level and wanted to give him some IV fluids. So the first bag went in and Owen finally went to the bathroom - it was as dark as ice tea!!! Yeah we weren't going anywhere... after 2 more bags of IV fluid (so 1500ML altogether) he went to the bathroom again and it was much better. She allowed us to go home with the promise that Owen was to drink, drink, drink. IF he did not, he has to return to clinic tomorrow to be checked again as it will not take much to dehydrate himself again.

His 6MP is on reduced dosage for a week due to his counts and weight loss until I do counts next week. So hopefully the fluid will help Owens rollercoaster of a ride and will help the way he has been feeling.

I spoke with Dr. Cherrick about end-of-treatment. After he has completed everything they will remove the port, practically immediately. the Port is a source for infection and they do not like to leave it in. Without the port we will no longer need to call the doctor and go to the ER for fevers - yippee!!! When they remove the port they will do a bone marrow test. Even (if) the bone marrow shows a relapse (which it is NOT going to) she is not concerned that the port has been removed, due to the next step would be to give Owen a hickman line because he would need another bone-marrow transplant. But we are not going there... I want to focus on removing the port and all is well and we start living on the Off-Treatment couch!!!

Ok we are settling in to watch Enchanted ... have a good night!

Monday, March 17, 2008 8:25 PM CDT

The rollercoaster ride is still going. Owen continued to feel awful all day Saturday. Sunday he woke up feeling pretty good. Papa W stopped by, and later Papa Fred and Grandma Lea and he was in a good mood. He started to feel awful after eating a little dinner - his stomach, and went and laid down for a bit. He was back up and we all colored eggs.

This morning he was very grumpy and said his stomach was upset again. I told him he would feel fine once he got moving. It was most likely his only day of school this week, he could make it one day....

I was off to take Tyler to Dr. Kort for his Surgery checkup and Mom went to AJ to sit in on the 504 meeting to add physical therapy to Owen's school day. It was just the formality, but I wanted to make sure I had someone there. Tyler made out fine, he is released from Dr. Kort, he will just deal with Dr. Mackowiak now for his thyroid, well one doctor off the list! Dr. Kort came out and got us when we were in the waiting room. She had an older boy (probably late teens or early 20') who was a refuge and was deaf. He needed the surgery due to having Graves disease and was scared. So she brought Tyler in to show him the little boy who did it! He gave the thumbs up that he would do it after seeing Tyler. Dr. Kort said the pathology test did comfirm it was Hodgemoto disease, which is the white cells attacking the thyroid. Eventually his thyroid would have fizzled out on its own, but we may have been crazy with his thyroid ups and downs by then.

So back to Owen... Mom had just made it home from the meeting and there was a message... Owen was sick and needed to be picked up. So back to AJ (too bad they hadn't caught her before she left, the buses were just starting to unload when she pulled out. Owen had a fever of 102.2 I called the doctor. All his cultures from Friday night were negative, so it was assumed he was okay and did not need new cultures. We could give him Tylenol and they would be seeing him in the morning. I got home from work and Owen was mad at me. I MADE him go to school and he was sick, he told me he was sick. OK- yes I feel like a heel, but Owen is 'always' grumpy or sick feeling in the morning until he gets moving so it is hard to know if he is 'really' sick! He just needs to get rid of this once and for all, why does it keep hanging on???? He has lost 7 pounds!!!! He looks so skinny and he is just having a hard time eating anything. He will be real hungry and then takes a few bites and is done. Either he is full or he starts to feel sick. Sad to say but I wish I could put him on steroids to fatten him up!!!!!

He has to be at the doctors tomorrow at 8:30. His spinal tap will probably be around 10. He is looking forward to the anestesia so he can get that funny feeling... Hopefully he will suffer mild headaches afterwards. He is looking forward to a redbull too! We let him have 1 a day for a couple of days, as caffeine is good for the spinal headaches. Course red bull is not so good for us and a wound up Owen!!! He use to drink Mt.Dew for the headaches until Uncle Steve introduced him to Red bull!!!

I will let you know how he makes out... have a good night!

Saturday, March 15, 2008 5:46 PM CDT

Well it has been a roller coaster to say the least.

Owen did not go to school Thursday. He got up, dressed and then was in the bathroom with the dry heaves. So he was staying home. Chris called because he was sobbing that if he didn't go to school he couldn't go to St. Baldricks. I said I did tell him that, but if he was feeling better I would take him, I just didn't want him to know that.

So he slept all day and then off we went to Rochester. We arrived a little late, but Owen made it to the stage in time to help shave Lynne's head! He was beaming, he thought that was so cool. It was packed, which of course is not Owen or Tylers thing... I left Jake home, but Tyler was crying so hard that I was leaving I brought him along. Aunt Susie and Bev were there so we ate dinner afterwards too. Thankyou Aunt Susie!!!

Owen was VERY chatty on the way home. I found out all kinds of things he did last year at Camp Good Days, things at school, he was just a wealth of information.

He did head off to school Friday but by 12:30 he was in the nurses office not feeling good. So Chris went and picked him up. He spiked a fever of 102.3 at 4pm. I didn't get home until almost 7 because I went for groceries after work. When I got home he told me he had the fever, so I took it again and he was still 101.5 I knew I had to call. It had been over 3 days since he had a fever. So sure enough we had to go to the ER.

We got there at 8:30 and his fever was gone. He did not even get accessed for the cultures until 10:30. Then gave him an IV antibiotic good for 24hours. He slept the whole time we were there. At 2am they finally came back that he had an ANC of 2000 and we were free to go. NOW you know why I hate calling when he has a fever and I am 'pretty sure' he has an ANC. Between the drive over and back and the 5 1/2 hours there - it is a long night! And 5 hours is pretty 'quick' haha. But I have promised to call and I am, I know I would never forgive myself if I was wrong.

Today he has felt pretty cruddy all day. No fever but diahrea again. I have been a busy bee all day. Every bed stripped, comforters and all in the wash. Beds lysoled, clorox wiped all the furniture, door knobs light switches. Windows were open. I just need this OUT!!!

Tyler is on an antibiotic. His nose has been running, but even after the first day he was so much better. Seems first thing in the morning he has alot and then is good. Hopefully we get this out of everybodies system!!!!

Papa Fred and Grandma Lea had a 'new kitchen' party tonight but alas only Chris and Jake went. Ty probably could have gone, but he started with the nose around 5, so I am hoping the antibiotic isn't failing!

Tomorrow we were going to see the Easter Bunny but that may be on hold too. Maybe some egg decorating...

Next week is only 3 days of school and Owen is out Tuesday for his spinal and most likely Wednesday because of the headaches he gets after. I am so afraid he will fall behind! Have to get some work for the holidays to work on!!!! He is getting A's and B's so I am thrilled with all the time he misses.

Tomorrow is another day......

Wednesday, March 12, 2008 8:14 PM CDT

Owen is making progress. Yesterday was not a good day. He spent the day throwing up, diahrea and sleeping. So then last night he was very restless and couldn't sleep. His stomach was still upset and just from sleeping most of the day he couldn't sleep. So today he slept until 1 when I had Mom make him get up, or he would be in the vicious cycle of sleeping all day, up all night. He was pretty good after that, no getting sick and no fevers. So looks like he may have finally gotten over this!!!! As of right now he should be in school tomorrow and then off to St. Baldricks tomorrow night to give Lynne a haircut....

On the good side... Owen has 8 more weeks of treatment!!!! Wow I can't believe it - he is almost done!!! Course that gives you a great feeling in one breath and anxiety over not taking meds and the what will happen with no chemo anymore, but lets focus on the positive!!!!! Next tuesday he has a spinal tap on tuesday.

Tyler is starting back up with a very runny nose. He did take cold medicine for me tonight and his nose has been great since then. I wish he were better at taking his meds! I did get a call from Dr. Mackowiak for his thyroid. His levels are low so he will need to start taking the levoxyl for low thyroid again. Hopefully he will not be expecting it in his breakfast it has been so long and there will be no issues getting it in. He has to go back to see the surgeon Dr. Kort on Monday for a follow up but his site looks great. Not really sure if we see much of a difference yet. He has been sick so he has been low key anyway.

Jake started Karate at school today and loved it! He needs something to help burn up his energy!!!!

I have booked Owen a trip to Canada this summer. He and Grandma Pat are going out to visit Grandma and all the aunts and uncles. They are leaving the last day of school, due to the best flights, but Owen didn't mind he wants to get back out west and see his cousins. We are sad that we aren't all going but with a disney vacation this fall it just wasn't in the cards.

Then there is SU... bummer on their loss today. We are so happy we decided to cancel our trip to the Big East this year!!! Next year we plan on going though.. good or bad season... it will be a basketball trip or a NYC trip, either way it will be fun.

Have a good night!!!!!

Monday, March 10, 2008 8:11 PM CDT

Owen had a little bit of a set back today. He ran a fever all day 102.2 I did call the doctor but since he had only been fever free for a day it is assumed it is still the flu and we were ok to stay home. He had a good day yesterday, maybe from the excitement of coming home. I was thinking he was on his way back to being healthy. So we will wait and see what tomorrow brings. Hopefully he will be up to seeing Darren in the morning. He wasn't as sad about going to the hospital this time though. I think he knew it was the best place for him as sick as he felt and the fact that we went directly to 7H (no ER!!) and directly into the arms of his wife Brooke!

Chris went to work today but took the early out as he was feeling crummy. So Owen and Chris spent the night in bed. Jake and Tyler liked having me to themselves and we played hide-n-seek and the Singing Grinch board game.

Hoping Owen will be feeling better by Thursday at least... he wants to go to the St. Baldricks event in Rochester and let the shaving begin. He is so excited to cut Lynnes hair!!! Look out Lynne you have a maniac after you!

Have a good night!

Sunday, March 9, 2008 9:32 AM CDT

We are coming home!!! Now with a source for the fevers and no worries about the port being infected Owen can go home and rest up. Although the doctor is busy the drinks as Owen has not been drinking alot with getting IV fluids.

Owen feels ok today. He is getting more of a cough and stuffy nose now and has not had the fevers so looks like he is on the road to recovery.

Saturday, March 8, 2008 10:36 AM CST

Owen has officially been diagnosed with the flu. So now I am betting that is what both Ty and Jake had as well and most likely what Chris has now! They are recommending Chris get checked so he can benefit from the tamaflu medication. For everyone else is is really past the time that it would take affect. Although Tyler seems to be feeling crappy again and I may get him back to the docs tomorrow and see if they won't put him on something now that they know the flu is in our house, or for his nose....

***********************************

We are still here. Owen ran low fevers yesterday on and off all day. At 4am today he ran 104 fever again. So they took more cultures of both his line and through a periphyrl. He is now coughing as well. They did a flu swab this morning. But with spiking a high fever he will not be released today. They want to make sure the fevers are from something viral and not his port line.

At home Ty and Jake seem to be coughing alot again and now Chris is not feeling great. Hopefully we can clear all of this from the house and get everyone well!!!!!

Thursday, March 6, 2008 7:59 PM CST

We knew Owen couldn't stay immune forever... He arrived home today from school and laid on the couch and complained of being cold and then fell sound asleep. He woke up 1/2 hour later and asked for a blanket saying he was cold. I took his temp and he was 103.4!!! So I called the doctor and he wanted us to come over and go right to 7H. With the fever that high he wanted him on watch. Most likely he has the same viral infection that Jake and Tyler had but to be safe he is watching him to make sure it is not a port infection. His fever has gone up now to 104.1 even with Tylenol. His labs are back and since his platelets are 331 he is ok to get motrin as well. So that has now been ordered. He feels like crud. He said now he knows what I meant when I told him tuesday - that he would KNOW when he got what Ty and Jake had.

Ty returned to school today but I think he was just not up to a 'real' day yet. He slept at school and is still just tired. Jake returned home from school and is coughing so he probably has now picked up my cold! So needless to say no one is going to school tomorrow and we need to just get rid of the fevers and colds once and for all!!!

Please think of our cousin Dejah in Canada. He is in the hospital for his long chemo treatment and for a stem cell transplant. He has already had a bad reaction to the chemo and is having a very rough time right now.

good night everyone, I will keep you posted.

Tuesday, March 4, 2008 5:21 PM CST

Well things are split here... Jake ran high fevers again all day yesterday and Tyler no fevers but not up to much but laying on the couch. Today Jake ran no fevers, Tyler ran low grades and is gushing at the nose and coughing galore. Owen decided he didn't feel good with all the sickness around him... but the truth was he was fine.. just paranoid. He will be back in school tomorrow!!!!

I am going down hill as well. I think I have a bad cold from traveling, I always seem to get sick after I have been on a plane. I have pushed myself as I feel ok in the morning but right about now I am ready to curl up and sleep for a week.

Chris came home from work with a bad sinus headache. So our house is in pretty rough shape! But for once Owen was the only one who escaped it so we are very happy about that. His counts are good ANC is over 2000 so that is wonderful news with all these germs.

I am planning on taking Tyler back to the doctors tomorrow. Although his fever had gone away as predicted it is back and now with more symptoms so I hope they give him something as he has a hard time getting over anything without help.

Heres to hoping Jake and Owen are in school tomorrow and the rest of us start to turn around.....

Have a good night!

Sunday, March 2, 2008 5:55 PM CST

As usual we like to share our sickness... Tyler continued to run high fevers through the night until this morning. He hovered right around 101 all day and see to feel a little better but far from feeling good! Owen and I went to get groceries and returned to find Jake running a high fever. So Jake has now been burning up all day and sleeping most of the day. At least he is a happy sick boy. He is either sleeping, or when he is awake he is very chatty and happy and does attempt to play.

Owen and I decided we weren't going to let the beautiful day get spoiled and left Chris how with the sick household and picked up Dan and Sean and headed out to go sledding. We had a fun afternoon and it was great to see Owen enjoying the outdoors and hanging with his friends. It was nice that he has not caught this bug and we were able to keep our plans for once! He was exhausted when we returned home and fell sound asleep for an hour.

Hopefully he will for once escape this. Tomorrow I have to do a blood draw for him to check his counts.

Owen has another sponsor for St. Baldricks. Patrick McGloon emailed me to say he was sponsoring Owen for the Syracuse St. Baldricks event. I have posted his site at the bottom of the page for anyone who would like to get behind him and support him on this great event. The syracuse event is next Sunday the 9th and the Rochester event is the 13th.

Wells heres to hoping we wake up tomorrow with no more sick people in the house. But Tyler and Jake are both home tomorrow.

Saturday, March 1, 2008 4:13 PM CST

Well I guess the kids obeyed... they didn't get sick while I was out of town. Owen made it to school on Friday but shortly after arriving felt sick to his stomach and returned home. He slept most of the day and seemed fine last night and today.

Tyler spiked a fever out of the blue last night at 10, he told me he was sick and put his hand to his head and sure enough he was very warm 103.7 Chris managed to get some tylenol in him but it was a battle even for him. At 1am Tyler was 104.3!!!!! I got some more tylenol down but I think more went all over than in. This morning he was still over 103. He had not gone below 101 all night. I headed off to the doctors with him and he cried in pain the whole way. I think he just aches everywhere. Everything looked fine and no strep so it is 'Viral' and need to just keep him on tylenol and motrin. We can alternate to try and keep his temp down. Yeah right - even more medicine... have they seen Tyler take medicine! He has basically slept all day and when he is awake he is throwing up and crying. So I have spent most of the day on the couch cuddling him. We had the SU game today but I sent Chris on his way, Tyler needed me.

Looks like he may have what Owen had a few weeks ago or maybe something else, who knows but I feel so bad for him. He has the saddest eyes and justs keep saying 'sick'. I was concerned he may have an infection from his surgery but his site looks good and the doctor confirmed that it would be red and pussy if it were.

So we'll hang tight and hope this gets over soon. I promised Jake and Owen I would take them sledding tomorrow if Tyler was a little better and I could sneak out because I know he wants me when he isn't feeling good.

But tomorrow is another day...

Thursday, February 28, 2008 8:00 PM CST

I have returned and had no issues on my trip really. Utah was beautiful with the mountains full of snow. Unlike NY the sun was shining everyday and coming off the mountains on our morning drive was just breath taking. Only issue getting there was in the last 15 miles going over the mountain pass when a blizzard just popped up. I could barely make out the red tail lights on the truck in front of me on the winding road and wipers on full blast. So my knuckles were white and I was relieved to see the bottom of the mountain again! Good thing I have winter driving experience and mountain roads from trips to B.C.!!!

The red eye ride is quite the experience! We arrived at the airport at 7pm and our flight was at 11:45. We ate dinner and then dozed a little waiting for it. Then found out our flight was FILLED with about 60 teenagers on a violin trip!! They were great though and were quiet on the flight so I was able to doze. we had a 3 hour layover in JFK this morning before finally arriving home!! Thank goodness I was on my last legs! I was able to doze a little on the couch before Owen arrived home first thrilled to see me home. Tyler was so happy to see me get on his bus and started to clap with 'Mommy your home'!!! Last but not least Jake flew in around five screaming my name. What an awesome welcome home from them all. Made the long night worthwhile vs. traveling all day today and getting home later tonight.

Owen and I participated in the Parent vs. Student basketball game tonight. Don't know how he talked me into that last night on the phone but I did it! We had alot of fun although I had been quite nervous it has been... well never mind how many years it has been for me! Owen didn't make any baskets BUT he said to me at the end that he had alot of fun and wants to practice getting stronger to shoot! Absolutely it is all about having fun! Tyler thought it was quite funny to see mommy play. Jake was busy socializing with some of his classmates who were there and his teacher.

We are all ready for bed now though and I think I will be asleep in about 30 seconds!

Oh forget to say.. doc's office called and Tyler's pathology test was back and his thyroid showed no issues (you know... cancer), but it was extremely large they said. I will have to discuss with the doc when we see her on the 17th as it was just a nurse who called chris. Because that amazes me, both the surgeon and the endocrologist didn't think it felt large prior to the surgery so it may have been large inside and they were unable to feel it from the outside of his throat. His bandage is off and he has a pretty good scar there and I was shocked at how large the incision was.

Have a good night!!!

Sunday, February 24, 2008 7:43 PM CST

The weekend went well. Tyler seems to be just fine. Other than asking when his bandage can come off he has been great. No more tylenol for pain or anything. He got a get well card in the mail from Miranda - that was so sweet - Thankyou!!!!

Owen had his friend Thomas spend the night last night. So it was fun for all. All the boys love Thomas. Owen and Thomas set up the livingroom as a casino and played cards and roulette for quite a while. Jake, Tyler and me did spin art painting.

Tyler stayed downstairs with Owen and Thomas till about 11 and then he was ready to go to bed in his room. Jake was fast asleep at 9! This morning they were all up early and ready to play again.

So it was a good end to their vacation week as they had a pretty uneventful week with Tyler surgery.

So I am off tomorrow and am hoping for all the boys to stay healthy while I am gone!!! And no issues with the planes!!!

Our friend Mira did well on her surgery and the docs think they got all of the tumor. She is back home from NYC and will rest up before the next phase of treatment starts.

Hopefully I have nothing to update about while I am gone so I will catch up with everyone Thursday night!

Friday, February 22, 2008 3:02 PM CST

Tyler is doing fine and we are home! He woke up once around 1 complaining of pain and we gave him tylenol. He then woke up twice to ask to use the potty! We were awake around 6am and the surgical team was in a little after that to remove the big bandage off his neck. He still has the steiry (sp?) strips on his incisions but they will remain another 5-7 days. The doctor was in at 9:30 and said Tyler was doing great and we could go home. She believes after seeing the thyroid that he had Hashimoto's thyroiditis, which is the white blood cells attacking the thyroid and destroying it. Which would also explain is cycling blood results. The thyroid was white in color which seemed to indicate this was the issue. But it has been sent off to pathology to do more tests on it.

Then it became the waiting game for a resident to be available to discharge us! Finally a little after 12 we got our walking papers. Tyler was very shy with the doctors and I think a little nervous of what they were going to do to him! But when she told him he could go home he perked right up. I thought I would have a handful after that, as once Tyler knows he is leaving he becomes obsessed to go. But he snuggled down in the chain with me and we watched cartoons. We went for a walk down to 7H and he played in the play room for a little bit. By noon he was taking his coat out of the locker and saying bye-bye, so luckily the nurse came then to discharge us!

He asked for chicken at McDonalds on the way home which was great since he has only drank, no eating. I picked up lunch for everyone and headed home. He only ate 2 pieces of chicken but it was a start!

He has only had tylenol once today around 2 so I think he is feeling better every minute! Tyler will have his blood tested the week of March 3rd and we have an appointment for a checkup with Dr. Kort the surgeon on the 17th.

Everyone else is doing fine and happy to have Mom back home. I am exhausted!!! I think this took more out of me than I thought it would. I guess my body is in tune with the Cancer world, but wasn't up for stress with another child. It feels good to be home.

I unfortunately am leaving monday late morning for Utah - yeah other side of the country! But will be home thursday morning - I will take the red eye home wednesday so I will be here when the boys get home from school.

Owen is being sponsored by one of his nurses at Strong in Rochester. Owen will be able to take the first shave of her head! Lets get behind Lynne and support her - Owen is very excited to be a part of this!!! His story is also posted on the St. Baldricks site.

Have a good day and thankyou for all your well wished for Tyler!!!

Thursday, February 21, 2008 6:33 PM CST

Tylers surgery went well. His throat is sore and he wants lots of cuddles. I pretty much am just laying with him in bed and he doesn't even let me lift my head. He will reach up and push it back down on the pillow next to him. The doctor said it went great and she was sorry his throat was sore - it was most likely from anestesia trying to find a breathing tube that fit correctly so he had 3 different ones inserted in his throat before they were happy with the fit. Hopefully by tomorrow he will not be in pain anymore.

He was so excited that he was coming to the hospital with Mom last night. I was cooking dinner and he was yelling and yelling to me to come upstairs. I walked into my room and there he was proud as a peacock... HE had packed the suitcase with his stuff! Mind you it was 4 pair of PJ's, several socks, shorts and t-shirts but it was packed! He was so happy!!! This morning he jumped right up at 5:30 am. and stayed awake the whole way and started to et excited when he saw the hospital. Even when he went in the OR - he was still so happy. He got the mask with the sleepy med and he started grinning and laughing as he got all loopy before crashing.

NOW after surgery - he was not so happy. He woke up asking for me so back I went. He just sobbed and clung to me. They gave him so fetanyl (morphine) to take the pain away and calm him. He settled right down for about 40 minutes and then started to cry in pain again and grabbing his throat. So more fetanyl and he calmed down again. We headed up to 8P and he pretty much just slept with a tight grip on me! He has done great with the bathroom too. I put a pullup on him since I wasn't sure how well he would do with getting the anastesia. But he has been dry as a bone and peeing in the urinal.

He is not eating yet - has only had water and a little bit of apple juice. I think he is nervous of eating and who can blame him. He is staying awake for now. We went for a stroll down to the play room but he was very shaky and needed to sit down, most likely still the anesthesia affects. So I got the wagon and brought him back to the room. We have gone for another stroll in the wagon a little bit ago and he seemed to like getting out of the room. If he wants to go for another ride tonight, I will venture down to 7H to visit.

It was funny today. The nurses, and anestesiologist kept asking me if I had been in the surgery center before as I looked familiar but they didn't remember Tyler. Nope it is Owen I am here with... and they all know Owen. The nurse who had Tyler in recovery has now had all of my boys. She was like... Ok - do you have any more!!! She had Jake back when he went for the MRI when he was having the bone pain and weird blood test results. Then our nurse on 8P thought I looked familiar (she used to float on 7H). The child life specialist and the girl who takes the lunch order both stopped dead as they walked in the room and there I sat!!! It was too funny.

Tyler is dozing again now, but hopefully will wake up so he is not up all night!!! Sounds like we should be out late morning if Tyler has no issues tonight.

Have a good night!!!

Tuesday, February 19, 2008 8:50 PM CST

Owen's had his monthly checkup today. He does have a crackle in his lungs, so we were sent for an xray. It didn't look to bad but he was put on an antibiotic. Sometimes after having a bacterial or viral infection like he had, the lungs will get infected after. So to be safe and hopefully prevent him from getting pneumonia they have put him on an antibiotic. Other than that he did well. Even his breather of pentanamine for anti-pnuemonia he did very well with. He brought his ipod and played a game on it while listening to music and it distracted him enough. We had to interrupt him when it was finished he was so involved and did realize the med had stopped!!

Tyler's nose ran quite a bit today. Oh I hope he is able to have surgery!!!! I don't want to postpone it, but know if he is sick they won't do it and that is best. I have been trying to give him cold medicine but he hates it and it is a fight and most goes all down the front of him. I bought 'orange' cold medicine today as he likes his 'orange' antibiotic and I am hoping he will take this better.

The boys and I went to the mall tonight to play some games in the game room. I feel bad they are off this week and things are crazy at work plus missing 1/2 of today and then thursday/ friday for the surgery I wasn't able to take any more time off this week. So we spent a night of fun. Tyler loves to ride on the motorcycles there. They have a new game 'Deal or No Deal' for winning tickets. I was just as addicted to that as Owen!!! I think I would do poorly on the real show, I was always pushing the limit hoping to get the big prize and ending up with only a few tickets!

Jake and Owen pooled their tickets together and got a set of metal airplanes to share. We'll see how well they really share!!! LOL

Tomorrow the boys will go spend the night (except Tyler) at Mom's as we are heading to the hospital at 5:30 thursday morning -yuk!

Have a good night!

Sunday, February 17, 2008 4:06 PM CST

Things are going well. Tyler and Owen are on the edge of getting their colds back I think. They are both coughing, and Owen had an ear ache yesterday. I was going to take him to the pediatrician today to check but he woke up with it feeling fine.

I just pray Tyler doesn't get sick, I want to do this surgery Thursday!!!!

We went to an AWESOME SU game yesterday. They came out and beat Georgetown! One year ago we watched them do the same thing at the dome, but Owen was with me doen on the court seats with lots of special treatment! Can't believe that it has been a year since then already!

Tyler got his 'big boy' bed today. His crib converted to a toddler bed and now a full size bed. He is so excited and beside himself. "Me? Big Bed? Yeah!!!!" His comforter hasn't come in the mail yet so its not quite complete.

We bought the mattress at Metro Mattress and now I have to complain as I am so furious with them. The mattress/ box springs arrived today. Well when they put it in the bed it was HUGE, it was really high off the floor, I was like 'oh how is he even going to get in that??' They joked and said a ladder. Well off they went and the more we looked at it we said this will not work. It was standing 35" off the floor and Tyler is 44" tall! 'Owen has a full size too so we measured and the box springs were the same height but Ty's mattress was 12" thick vs. Owens 7", then Tylers bed started with the mattress 12" off the floor as it converted into a sleigh bed and was higher than a standard bed. So I called and guess what.... I am out of luck, I signed the delivery receipt and they won't do anything. We could 'BUY' a skinnier box springs or a bunky board (only an 1" thick) but we would have to pick up at the warehouse in syracuse or pay MORE to have it delivered. I said we just wanted to exchange the box springs for one of these. But nope, they don't even take the box springs back. So we would also have them and have to purchase the alternative. She told me all this was on the back of the invoice, that once the delivery people leave it is a finished contract. I told her if she found one person who reads, and sign all that fine print she could have a million dollars!!! That this should be something they make sure is clear when selling so that the customer understands there are no exchanges once they see the merchandise in their own home - I would have not signed so easily since I was a little in shock with how it looked once it was here. I told her I DID comment on how high it was so the delivery guys did know I was in shock, but only told me to get a ladder. She told me they were only to deliver the goods they wouldn't know if it was wrong and to make any suggestions. So no matter what Metro Mattress has NO RESPONSIBILITY!!!!!! So in the end I told her we would buy the bunky board from someone else and would NEVER do business with them again. This is also where we purchased our mattress, and I told her that. We are returning customers and she just lost our business permanently. She told me she was working with me by giving me options. I said yeah options to spend more money not to work with our current purchase that has been in our house 2 hours!!!!!! Arghhhh I am just furious!

So any way back to important things! The boys and I are just hanging out. Owen and Jake attempted to teach me how to play a xbox game 3 player, but I really stink and Tyler was getting so mad that I kept goofing up. LOL So I guess we need to find a different avenue to play.

Tuesday is Owen's monthly appointment. He has therapy in the morning and then his onocology appointment in the afternoon. He will get vincristine, his monthly breather for anti-pneumonia and a check up. So hopefully all goes well. Not sure what this week brings with the boys off of school. Our cousin Jordan is coming over for a little while tomorrow and then later in the week Tyler and I will be hanging at the hospital (we hope). But hopefully they can get some fun in this week.

Please say a prayer for our friend Mira, she will be undergoing surgery Tuesday morning for her relapse of the brain tumor. OUr hearts go out to her and her family!!!!

Have a good night!

Thursday, February 14, 2008 5:39 AM CST

Well I think things are back to normal! Owen returned to school yesterday. Tuesday he was feeling fine just still very tired. He only made it through part of his therapy and then was home and back asleep. Part of it may be Tyler had a very restless night. He had a bad day at school monday and Chris took the TV right out of his room, so needless to say he cried alot that night!

Owen had a great day at school yesterday and not one visit to the nurse! He is going to receive tutoring next week on their winter break as he missed alot of new material and don't want him falling behind.

Dr. Mackowiak (thyroid doctor) was able to reschedule Tyler today, unfortunately he was going to go to lunch with his class and I was meeting them. But it is important to get this last visit in before surgery next week. So hopefully we will be back in time to meet them at the restaurant, as long as they don't send us for blood work or anything.

Aunt Susie ended up having a quadruple by-pass!!!!! She is doing ok, but still in ICU as she still requires oxygen. So please keep her in your thoughts and prayers.

Another special little girl needs your prayers. Mira, who we met at 7H a few years back, has just found out that she has a new growth in her brain cancer. Her family is in NYC right now for surgery. Owen absolutely loved Mira, and when she firt came to 7H she was very timid of everyone, but she loved Owen too! We are all thinking of the Brouwer family and pray the doctors are successful removing this new growth.

Jake is very excited about his valentine party today. Although I had to fight with him last night as he is bringing whip cream to the party and I bought 2 cans. He thinks he should keep one here to eat! 'Someone' - hmmm the Tortorici girls??? tought him how to spray the cream in his mouth and just eat it right out of the can!

Have a good day!

Tuesday, February 12, 2008 4:41 AM CST

Making progress. I was afraid Owen would be going back down as he was now starting to cough alot. However he woke up (10:30!) yesterday and was feeling ok. He actually even let bed for short periods and came downstairs. He did take a nap but said he was feeling the best he has in days. We are hoping he will be back to normal by today or definately tomorrow. He has therapy this morning and I think he needs it after this set back!!! He did tell me the worst part about missing the play was they video taped it and he was going to be able to see himself in acting!

I have his 504 meeting today with the school to add physical therapy to his plan so he can receive this at school for the AVN. He is nervous about going to school, but even if he gets in for a little bit - I would be there to bring him home if he realized he wasn't up to it. So we'll see...

We went up to visit Aunt Susie last night at the Rochester hospital. She is scheduled for a triple by-pass this morning!!! So please keep her in your thoughts and prayers today.

Have a good day!

Sunday, February 10, 2008 7:20 PM CST

Making progress here, slow but sure. Owen has not thrown up since 1 yesterday. He is very achy today, and can only sit up for very short periods or he gets a head ache and his stomach starts to get upset. He ate a little bit of eggs this morning. But I am not stressing over the eating that will come. He is drinking great and eating the pedialyte popcicles. He is starting to get warm again though. He was 100.3 so hoping he is not going to go back down hill again.

Our Aunt Susie suffered a heart attack last night and is in Rochester General. She is doing ok and I spoke with her today. They will be doing more tests to determine where the blockage is. So please hold Aunt Susie in your prayers.

So far everyone else has escaped getting sick. I had lysol in hand yesterday through the whole house and all the beds washed. Tyler does have a little bit of a stuffy nose so hoping this doesn't grow. Need to keep him healthy for his upcoming surgery on the 21st.

Tyler and Jake worked hard on getting a jump on completing their Valentines. Tyler finished one class and was 'done' so we will have to work on the other over the next couple days. He has his boces class and mainstreamed class. Jake completed his with his name but we are waiting to get his list from school to finish them up. He was very excited about filling these out and wants to take them tomorrow... he doesn't need his class names he will just hand them out!

Not looking good for school tomorrow though, forecast is for 20 below with wind chill!!! Yikes!

Have a good night!

Saturday, February 9, 2008 6:41 PM CST

Poor Owen - no play this year. We kept hoping for a miracle and for him to be up to it but no good. Owen was up throwing up several times during the night and all morning every 45min to an hour. He was still drinking well and going to the bathroom. His profusion was good (pressing his fingers and the color came right back) so he did not appear to be getting dehydrated. On the good side he has not run a fever since 6pm last night and has not thrown up now since 1pm. His stomach is starting to bother him again now, so I am hoping he is not going to start again. I told him this morning that no fevers was a good sign... but he was sobbing, he would rather have a fever than throwing up!! I have to agree with him there. He is very weak and achy from it. I imagine tomorrow he will be even sorer from throwing up for 2 days, provided he doesn't start up again.

He did not mention the play today and I did not want to bring it up, it would do nothing but bring tears. Last night he was in tears and punching the bed yelling 'WHY? WHY? WHY?' 'Why couldn't I get sick next week or any other time, why now?!' I had no answer just hugs. I know he gets to do a lot of things, but the 'big' things always get hit. We have tried to go to florida twice and he got sick, toby keith concert he got sick, going to Marine Land with his cousins from BC, and on and on....

He has not eaten since coming home from the hospital clinic on thursday. As long as he is drinking I am ok, the eating will come in its own time.

So we are hoping for a great night for the rest of his class at the play - 'Break a Leg'!!! And hoping for a better night and day tomorrow for Owen.

Friday, February 8, 2008 5:39 PM CST

Well I wish I were writing to say Owen was feeling better, but he is feeling worse. He was up during the night with fever of 102.4, he spiked again this morning 102.7 Later this morning he threw up. He has thrown up 4 times today, all liquid as he is not eating. He has been drinking ok and we are really pushing it so he does not get de-hydrated. I did talk to the doctor and he is fine staying home since they have already taken all his blood cultures and flu-test. So since he has counts we continue to give him tylenol and watch him. If he doesn't drink enough or starts to look bad we need to call. If we think he needs hydration we can bring him to the hospital tomorrow for IV fluids. The poor thing!!! He is devasted over the play, he keeps saying 'Why me, why now' He said he was finally able to participate in special at school and has to get sick. I just don't want him to give up and not want to get involved. We are still hoping he will be up to the play tomorrow, it is 24 hours away, but it is not looking good right now.

On the bright side, Tyler had a great day at school!!! Makes a big difference to realize he has his privileges gone and he does not like that! He is now on a 'reward' chart. School is giving him a sticker for each good day at school. If he reached five he can have a privilege or surprise from us. So hopefully he will respond to this.

Jake continues to have 'beautiful' days at school. He comes off that bus just grinning ear to ear and loving it. He is making progress, but we continue to work hard with him to keep his retention.

Obviously this looks like it will be a quiet weekend, and hopefully what ever Owen has does not pass on to anyone else!

I will keep you posted....
Have a good night!

Thursday, February 7, 2008 6:17 PM CST

Well we have had some set backs here. Owen spiked a high fever (103.5) early wednesday morning at 1:30. He sobbed and sobbed that if he went in they would admit him and he would miss his play. I felt so bad and told him we would 'try' tylenol but if it didn't bring it right down I had to call. The tylenol worked and he was feeling much better. I drew his blood the next morning for counts to see where he was at. He had 11.7 WBC!! Now that is normal for most of us but with Owen on chemo pills should stay around 2-3 so he was obviously fighting something. I talked to the doctor the next day early afternoon once they got the counts, and he had not run another fever. I was told I NEEDED TO CALL when he was that high. He could have a line infection and things could go from bad to worse very quickly - and we have seen that happen too many times already! And I KNOW I should call, but Owen has been through so much and I hate dragging him into ER in the middle of the night, I just think it hurts his moral so much to keep having this happen, but I guess a few tears is better than he getting really sick.

So he seemed to be feeling ok through wednesday and through the night. I woke him up early as he was suppose to ride the early bus again for play practice and he felt warm. Sure enough 102.7 So I called the doctor and she wanted us to come into clinic. By the time we got there it would be open. So I packed a bag, just in case, and we headed out. They did blood cultures on his port and also from his arms. He got an IV antibiotic that is good for 24 hours. They also did a flu-wash on him. Very nasty, they put saline up your nostrils and then suck it out with a thin tube stuck way down your nose. Very uncomfortable but Owen did great, but it was clear he hated it! The doctor said the flu is everywhere right now and this test is usually only good within the first 24 hours while running a fever so we may have missed the window. She again stressed how I need to stop not calling and using my own judgement on when to bring Owen in. She is ready to strangle me I think!!! So I am promising to stop being the nice mom and worrying about Owen's mental state more than his health. And she is right, I do need to call. I would never forgive myself if he ended up really sick and I had made the decision that he didn't need to go in. The rapid flu test came back negative and we were on our way home.

I stayed home the rest of the day, Owen just wanted me near he just ached all over and felt cruddy. Owen watched TV for a bit and then slept all afternoon. He hovered around 101 most of the afternoon and is now 99.4 but he is 'freezing' again so I think he may spike soon. We are hoping for the best for him able to be in the play. He has to go to school in order to participate in it tomorrow. So I told him not to worry about Friday, if he felt up to it fine, but otherwise just rest rest, rest and he would still have Saturday. I just want him to make one night. He needs this. He is so frustrated that he ends up missing so many special events that he is looking forward to because he gets sick. He has worked very hard on this play. I just don't want him to 'give-up' and stop trying to join things.

Tyler is not getting better, in fact worse. He has not listened or done any work really for the last few days at school. Today they called and he had not even left the room because he basically was sitting under the desk all day and fought if they tried to get him to do anything. I sent Mom to get him and he spent the day there. He was not allowed any TV or toys. He was good though and knew Grandma was not happy with him and didn't even ask to have anything. He was devastated at home when he realized it was the same here. Owen went into his room around 6 to try and play a little bit of video games and Ty went to watch. NOPE, I told him he was not allowed and he started to pout and his eyes welled up with tears. That sent Owen crying as he felt bad that Tyler was in punishment. I reassured Owen it was ok, Tyler had to learn. He keeps saying he is sorry but it just isn't good enough anymore. So Tyler will need to learn to behave and STAY behaving!

So the next few days should be interesting, I kind of like our boring days so much better.... Needless to say I missed Mom's Night Out - Sorry girls - next month.

Have a good night!

Tuesday, February 5, 2008 8:00 PM CST

All is going well. We went over to the MOST on Saturday. They had a big playground type thing set up inside. It was a maze of mats, slides, shooting foam guns and obstacle course type things. The boys loved it. They had a place alot like this in Canada near Grandma that they went to everytime we went to visit. Owen spent most of his time in the gun area of course. Jake and Tyler were lost amongst the tunnels all day long. I spent the first hour crawling through it and sliding as well which they loved! Jake was a little nervous at first, but finally realized there was nothing but fun to be had and he couldn't get hurt. For my dare-devil he surprises me of the things that make him nervous. They also have a cave area there with dinosaur bone digging... yeah he was quite excited about that!

We stopped at Applebee's on the way home for dinner. Owen can't wait until his next birthday - he will be 11 and then they 'can't' give him the kid menu anymore! He never orders off it anymore but it drives him crazy that they still give it to him. I told him they might still... since they don't know he is no longer 10 and under!

Sunday was superbowl day... we went to a friends to watch it. It was alot of fun. Owen came with us as there was some other kids there and we didn't need to worry about him. I felt really bad when we got there. I just finished saying at Tyler's review that I want him to have 'real' friends, kids who are excited when he shows up and want to play with him. As soon as we got to Botandari's, Jordan came running up to my - Where is Tyler?? ARghhh - we could have brought everyone, but took the easy way as we would have had to keep an eye on Jake and Tyler and there were a lot of people and lots of trouble to get into! It was a late night too, Owen was dragging by the time we left. Am I trying to justify myself???

It was an awesome game and I won some $$$!!! My celebration was short lived since our fridge has been on the fritz lately and come monday morning it was done, ... so Chris was off to Riesters but it was nice to have the cash to buy it!!! But definately not what I had envisioned for my winnings!

Owen is getting very excited for his play. They practice every night and are doing early morning practice too - off on the early bus! Remember his play is Friday and Saturday nights at 7:30 at the Union Springs High School.

Tomorrow is an SU game and then thursday is Mom's night out. I have a feeling I will be bailing on the dinner though. Sitter Sunday, tomorrow and thursday just isn't fair to the boys. I get guilty mothers complex. There is always next month. I am starting to get a cold. Mostly a head cold, but it certainly wears you down. By the end of the day I am exhausted so it is probably better to back off a bit. I already know I will be busy friday and saturday watching the big debut of Owen's acting career. Although I know he will be great - we have already said he will be an actor, politician or lawyer when he grows up!!! LOL

*** Reminder if you want any daffodils let me know, cut off date is the 20th. ***

Have a good night!

Saturday, February 2, 2008 8:38 AM CST

All is going well. Owen has been busy with school and play practice every night after school. Time is winding down.... If anyone is interested in seeing the play it is coming up February 8 & 9 at 7:30 at the Union Springs High School. He was very upset that he missed several days of school with the pnuemonia as he wasn't able to learn one of the dances and there was no time to teach it to him as they still had a lot to learn, so he would sit out for that number. However he does have a 'small' solo part so he is very excited! Hope to see you all there!

Tyler continues to act up in school. He was due to go to the thyroid doctor on Friday where I would have found out the last results of his blood work. However the roads were very nasty - covered in a sheet of ice. Chris didn't want to drive in it, so I know it was bad! So unfortunately I had to cancel it. They had no opening until April 11th!!! So we are on the cancellation list. The doctor should be calling though so we can chat one last time before surgery.

Jake is making a little progress in school. He has been working hard at home, but this will be an ongoing thing to give him that extra support so he does not slip.

Other than that all is quiet. Tomorrow is superbowl of course so Chris and I will go to a friends house for a bit to watch the game. Today not sure what we are doing but may go to the MOST museum in syracuse if the weather stays ok.

A couple of the girls I go to dinner with on Mom's Night Out are SHAVING THEIR HEADS for the annual St. Baldricks Fundraiser in Syracuse on March 9th. I have posted the links to their sites below, so lets get behind these VERY courageous mom's and support them. Me, I will attend the fundraiser and 'watch' I am a chicken!!!

Thanks for checking in!!!

Tuesday, January 29, 2008 8:48 PM CST

Things are going ok. Owen had a depth perception test yesterday. His eye site is tested due to the Ex-Jade he takes for the high iron. His last test he didn't do well on this test and they wanted to repeat it. This time he did great. Still not sure if he has just learned the test - as it is hard the first time - of if the Ex-Jade had effected it. Owen does not take this med very routinely as he hates it and it is a battle. Dr. Cherrick is running some tests to determine if he may just be a high iron person as he has not had a blood transfusion in quite some time and his iron is still elevated. If not, we will just have to get much harder on Owen for this medicine and get his iron down. Today he had therapy and took a very nasty fall on some black ice, luckily he did not hit his head. He ended up rebounding and did well at therapy.

Tyler is having behavior issues again at school. He does well up to a point and then goes down hill and will do nothing. I sure wish I knew what was going on in his head. It is very frustrating, both for us and I am sure his teachers!!! I keep praying his surgery will resolve some of this but I know it is not the cure-all.

Owen is busy watching ROOTS. He is very interested in history and we got talking about slavery. ROOTS happened to be on TV one night and we watched part of it and he was very interested. So I got the series, I loved the series when it was on TV - how many years ago??? He is loving it and I think it is very good for him - much better than his video games!!!

Have a good night!

Saturday, January 26, 2008 8:45 PM CST

Things are going well. Owen has been feeling pretty good, he keeps getting constipated and having belly pain but otherwise feels good. His legs haven't really bothered him the last few days. I have been reading so much on this AVN that my head hurts! But seems that the pain does come and go but when it hurts it hurts and I have to say that seems to be Owen. He is either in pain or not. I just keep hoping it was caught early enough... seems like if 4 months ago the AVN did not exist and now it does that is early and good!!! I keep writing down questions and will give the doctor a call to discuss once I have had time to digest and make sure I have thought through my questions.

Last night myself, Owen, Pam and Samantha went off to High School Musical Ice Show at the war memorial. It was a really good show, I just love that movie! Owen and Sam clearly told us that we were NOT allowed to dance or embarass them! Owen wished it had more 'acting' and not just all the singing and dancing, but that is an ice show...

Today Tyler and I ran a bunch of errands so he got Mommy all to himself. He really loves High School Musical too, and I wished I had brought him. But when I bought the tickets - probably a good 8 months ago he didn't. I didn't dare risk bringing him and then able to buy a ticket there - he could have sat on my lap. Guess just can't see into the future!

Jake had a friend come over today. I can't believe he is 5 1/2 years old and this is his first real playdate at the house. He has had birthday parties, but never really just a friend over. He wanted Thomas (yes we have another Thomas for a best friend (owen's friend)) to spend the night but us parents agreed to start small... This was new to Thomas too, but they did great! They played so well together and were soooo good. Owen left with Rosemary to help her other son pick out something at EB games since Owen knows the video world so well. He was unsure at first... mostly because he had no money and to go in EB games with no money!!! And no I did not give him money - he needed to go and just help! He has plenty of opportunity to do chores for $$, he is paid on a per job done basic and lets say he is not making out too well... works for me, I am saving money now that we switched to this vs. a set fee each week and he doesn't do too much!

SU game tomorrow and then back to monday... these weekends just aren't long enough!

Wednesday, January 23, 2008 7:17 PM CST

Well it was a long day of doctor's. We arrived at 9:30 to Dr. Palomino (orthopedic surgeon) for Owen's bone pain. Dr. Palomino evaluated Owen and it seemed Owen's pain was more when bending and twisting his knee and didn't bother him with hip movement. Off to X-Ray and the stress fractures were still showing in his knees like before but his knee area was 'whiter' in color than before in the X-Ray. So she wanted to get an MRI to check for AVN. Owen did great in the MRI but my fears came through - he is at the beginning of AVN

Here is a simple definition: Avascular Necrosis = bone cell death caused by a diminished blood flow to the bone. As the blood supply to the bone is diminished the bone begins to die from lack of nourishment. As bone death progresses, the bone becomes weaker and more painful. Eventually the bone becomes so weak it fractures sometimes in several small pieces, making it impossible for the affected person to bear weight and walk. AVN is a progressive disease meaning it continues to get worse over time.

So while 4 months ago only showed bone stress it has now progressed into this disease. So what now??? Well all steroids are stopped for the remainder of his treatment. Steroids are most likely the cause of this. Owen will start Physical Therapy 2xWeek to try and build his strength. He will have to be pulled from PE for a few weeks to prevent possible injury there until the PT has started to strengthen him. Hopefully this was caught at the very beginning and we can stop it in its tracks. He has been complaining of a sore shoulder for a few days as well so we were back to X-Ray to check that too. This shows the stress lines similar to the knees 4 months ago. So if this is the start of it there too - I don't know. We return in 4 months to check both his knees and shoulder again.

I have been afraid of this very nasty disease. A couple of the kids I follow have been through this and have had knee / hip replacements due to it. It just does not seem fair the price these kids pay - first with Cancer and then with all the side effects that will haunt them the rest of their lives. While I know having Owen and dealing with this is 100 times better than not surviving Cancer - but come on - when have they suffered enough??????????

I just hope and pray since he was being watched for this that it was caught early enough and Owen will not get progressiviely worse and knee replacement will not become an issue.

Off to see Dr. Cherrick. Dr. Palomino had already been in touch and she knew steroids had to be stopped. He was only on 10 doses a month but obviously it was still doing damage to his body. I asked Dr. Cherrick if this was a concern - to remove part of his protocol for the leukemia. She did not believe it would matter. At this point in his treatment, they do not believe the steroids are really doing that much.

Owen had his 1xMonth anti-pnuemonia breather, blood draw, and Vincristine chemo. They took some extra blood to test for a genetic High Iron disorder that Owen may have. He has had high Iron for some time and initially thought it was due to the high number of transfusions he had received. He is on a medicine to help bring his Iron down. He use to be good about taking it, but it is a fight now for a while and he doesn't get it more than he does. It is an awful tasting drink. So since he has not received blood in a long time and his iron is still very high they just wanted to rule out that it was his 'normal' due to this other condition. I did NOT ask what it meant if he did have the disorder. I think I wanted to not have to worry about one more thing. If it comes back negative - we will need to get much harder on Owen for his Ex-Jade to bring it down.

Mom took Tyler to the doctor today. She did great - got a prescription for an antibiotic WITH a refill!!! So should be able to get Ty back on track and have a refill for his next bout which will surely happen again this winter! He was sounding real barky last night, then this morning his eyes were red - so most likely pink eye. The doc thought he sounded a little rattly in the chest, so all in all the antibiotic was approved. I am so happy! It won't take long to get him back to normal. The antibiotic usally kicks in for him - he just needs that help!

As I find out more about the AVN I will let you know. I have a bunch of literature on it from one of the caring bridge families, but now that it is a reality I will need to re-read it.

Tuesday, January 22, 2008 6:04 PM CST

We are plugging along. Owen seems to be better as far as his stomach - I think he was just constipated. A few doses of Miralax fixed that! He has complained yesterday and today of alot of bone pain in his legs again. Tomorrow he see's the orthopedic doctor again to see if his stress lines have increased or not in the last 4 months. She will probably not do anything even if they have as he still has a few more months on chemo. After that he sees Dr. Cherrick for his monthly checkup. He will get his anti-pneumonia breather, Vincristine (yep - more leg pain), and blood work for his counts.

Tyler is still flowing like Niagara Falls. He did not go to school today. Over the weekend his nose would run until about 11 or 12 and then stop until 6 but today it pretty much ran all day long. He is starting to cough now too. The pediatrician generally does not like to give him an antibiotic until his nose has gone for a week, but with the cough starting I will probably call and hopefully get one of the doctors who will be more pro-active and put him on the antibiotic. Once Tyler's nose starts it rarely goes away on its own. A couple days on antibiotics clears it. I hate the one week rule they now have, although I understand it, I also know Tyler does not get over this on his own so he usually misses a week of school before they do anything and he needs to be in school.

Jake is working hard on his numbers, letters and site words. Repitition is the key with him. He will do awesome one night and then the next gets frustrated and 'doesn't know them'. We are hoping working hard at home and school will help out. Yesterday I got him some Go-Fish cards for letters and he is loving playing so I think if I can turn some of the work into 'fun' he will do better. He is the social/ game boy. He loves playing the board games more than any of my kids.

SU lost last night and it was heart-breaking to watch. They actually had some team work going last night and came soooo close! I realize now how old I am though. Patrick Ewings son plays for G-town now and I watched his father (Patrick) play... how many years ago??? Guess I am a loyal fan but man that put it in perspective!

Have a good night!

Sunday, January 20, 2008 3:39 PM CST

Two years ago today the doctors confirmed that Owen had relapsed and our world crumbled again. I still remember hearing the news and just breaking down, I could think of nothing else but 'this was NOT good news'. Eventually I was able to hear what the doctors were saying again and learned only one leukemia had returned and it was isolated so that was promising. Owen had gone 22 months post-transplant with no real issues and life seemed to be wonderful and going so well. Here we are 2 years later with 15 weeks to go before he is off-treatment again. I am very excited to be reaching the end but will I ever be comfortable and think he made it?!! I hope I can live for the moment and cherish the fact that he has come through treatment and hope that this time he has beaten Cancer for good, but I know my doubts will always linger somewhere down inside, afraid to 'believe'. Owen had alot of rough patches in these last two years and in his true superhero form has managed to overcome each obstacle thrown in his path. He is truly an amazing boy, but he has many scars and many emotional issues due to this journey. I can only hope he will be the amazing child he can be and put them all behind him someday. I think as off-treatment approaches he will gain more confidence that he can return to the life of a child and be as normal as he can. Although he is much more mature and knows more than any child should know! Today is a bitter-sweet day. We are so happy that Owen has made it through the relapse treatment and that the light at the end of the tunnel is near, the date and remembering the doctors office and the pain will never go away and this day is stamped into my memory forever.

Other than that - things are going well. Owen is finally feeling well today. His stomach has been bothering him both friday and all day yesterday. He has had several bowels and maybe he was very constipated. So today he seems good, so I am hoping that was all.

Tyler has his first cold of the season, pretty good for him to not start with the runny nose till mid-january!!! He usually starts in October. So he is on cold-meds but as of yet he has not gone to the doctor. They will not give him an antibiotic unless his nose keeps running for a week. So hopefully the cold medicine will help and we can avoid a doctor / antibiotic. He feels okay other than that, he just looks bad! Plus running behind him with a box of tissues all day!

Have a good day!

Friday, January 18, 2008 6:52 PM CST

Owen is back to not feeling well. He didn't say anything when he got up so off he went to school. He fell sound asleep on the bus, they actually didn't realize it until they reached the elementary school and he was still on the bus! So back to AJ and he went straight to the nurse. His stomach was really upset and he just ached. So Chris picked him up and he pretty much slept all day. He had run no fever and did just eat a little. The nurse thought he might have picked up the stomach bug which is running rampid in the school, but he has not gotten sick, just has an upset stomach. So we will see how it goes. I have made him come downstairs and he seems a little better.

Tyler's surgery is scheduled for February 21st, so that was good that they were able to schedule it during break. We have to be at the hospital at 6am (yuck!) with surgery at 8am and that should last about 2 hours. We will then be admitted to spend the night and be watched overnight. So I am happy and nervous at the same time, but I think this is the right thing to do.

Have a good night!

Thursday, January 17, 2008 5:45 PM CST

All is going well. Owen has been back in school and staying after for play practice. Next week he will have his monthly checkup and pentanimine (anti-pneumonia) breather.

Tyler is feeling good again and doing well. Little issues is SS class, so he needs to straighten those out! Haven't heard yet from the doctor on his surgery yet.

And not to exclude Jake he is doing well too! He has been working hard on things he needs for school and I am seeing progress. He is definately a child who needs to have lots of repitition.

Last night we went to the SU game. It was a win, but a very boring game... aren't we hard to please!!! Hate it when they lose and aren't happy when they win!

Kim babysat the boys and they got to go out for ice-cream - a nice little treat! Then they played Wii most of the night. Kim loved it!!! She has offered to babysit for free if we let her play Wii all the time!!!!

We have another SU game on Saturday but otherwise no plans for the weekend. I like these quiet weekends!

Relay for Life is starting up already! I have posted the site for Owen above and am looking for team members so think about joining in on the fun this year!

Monday, January 14, 2008 7:54 PM CST

Owen is good to go. He will return to school tomorrow and start his chemo pills back up tonight. He will be late to school - therapy in the morning - which he is looking forward to after not feeling well 2 weeks ago and last week missing. He is on week 90 or 106 weeks. 16 weeks to go!!! That sounds like a dream!

We met with Dr. Kort today. We really liked her and after discussing the surgery - pros/ cons and asking for advice we have opted for the surgery. With the rollercoaster of a ride Tyler is on it just seems to make the most sense to remove it and be done with this ride. Although the result may be hypo-thyroid medicine if the remaining thyroid left does not produce enough that is not a bad option. The pills are small and low dose and not critical if he missing any. So we will need to go back once more to do all the pre-surgery papers and checkup and then surgery will be sometime in February - over break would be nice!!! I also have to travel to Utah in February so hopefully they will let me know in the next day or two when the surgery is so I can work around it.

I am hoping I have 'nothing' to chat about for awhile now and just good ol' boring Nothing going on Reports!!!

Have a good night!

Sunday, January 13, 2008 6:53 PM CST

Well we survived the weekend and looks like everyone is on the mend. Both Tyler and Owen are still napping everyday but both are feeling pretty good. Owen gets into a good coughing attack usually first thing in the morning and then again at night - but we'll take 2 a day. I have to do a blood draw tomorrow morning and I am sure he will be looking good for counts and we can get him back in school. I am glad he had this time off though or I could see him going downhill again fast. So rest was very good for him.

Tyler has had no more fevers and is eating a little more now. He actually ate all three meals today! Tomorrow we are off to see the surgeon and get her opinion of his thyroid situation. I did speak to the pediatricians office on Saturday. Given his symptoms (fevers am/pm, no appetite, tired, and sometimes pointing to his tummy and saying boo-boo) they thought it was either viral or possibly mono. Either way there would be nothing they would do. Since he seemed to feel fine most of the day and only when he spiked did he feel crummy - they wanted to just wait it out over the weekend and if the symptoms continued to bring him Monday and they would most likely do bloodwork. Luckily all seems well and he is on the mend.

We had a quiet weekend. I did take the boys to KB Toys with their Christmas gift cards. Jake was looking for Transformers, Owen the T-Rex from King Kong, and Tyler Mickey Mouse. The auburn KB was pretty empty in these areas so we headed to waterloo outlet mall. Still no Transformers but he found Skull Island for King Kong, Owen found his T-Rex and Tyler got a dancing Mickey. So all were happy. We stopped at Maggies on the way home for lunch. Today we went to Papa's to watch the SU game but Tyler and Owen slept the whole time we were there!

So hopefully this is a better week for everyone!

Friday, January 11, 2008 4:54 PM CST

We are plodding along here. Owen is feeling pretty good. Yesterday his cough was back to being barky and made me a little nervous that he was going down again, but today he is much better.

Tyler continues to confuse us. He went ALL day yesterday with no fever then at 8:30 last night he spiked 102.3 He is not eating very well. Eating about 1 meal a day and that usually consists of 2 waffles. He is drinking quite abit so that is good. I did told with the endocrinologist this morning and his thyroid is really high again. So that lets out thinking it could be a lab issue. Labcorp has now confirmed the spikes for thyroid. He said he is puzzled - he has never seen anyone cycle the way Tyler does so fast. He said since it does not seem to be affecting Tyler healthwise or him having issues that he would be ok with watching him for a while longer before treatment, but to get the surgeons opinion on Monday. I told him Ty has been sick all week, but not really sick. Just spiking fevers twice a day (morning and night), and not eating well but otherwise he is as happy and non-sick as can be. I told him his pulse has been high every night while he sleeps (over 100) and his Oxygen has been hovering around 95. Last night he was really good though 99 Oxygen and 80 for his pulse. He asked if the pediatrician had seen him and I told him no - frankly I would feel foolish bringing him in - he certainly doesn't act sick. Plus they have always said - a fever by itself is viral. I might touch base with the pediatrician tomorrow just to ask. So for now we will wait and meet with the surgeon on Monday and let her take a look at Tyler and give us her opinion.

Owen received a big package of cards from his classmates, that was wonderful!!! I think that really perked him up and I heard him laughing quite a few times so that was very nice. Owen is working on homework here at home. Mostly review for math and english editting but work just the same to keep his mind working. I leave him a list each day of what he must complete and after the first day of giving Grandma a hard time about it he has been great. The threats from Daddy and I on ALL video systems disappearing until his attitude changed certainly helped change his mind that a few hours of work was manageable!

No plans for the weekend, we will hang home so everyone continues to get the rest they need to re-cooperate. Monday I have to take Owen's blood and if all is well he will return to school on tuesday. We missed therapy this week and to be honest I thought of it right now as I was updating this - so if you are reading this Darren - we are sorry!!! Tuesday we obviously missed due to being in the hospital but didn't even think about it to reschedule.

Have a good night & we are looking forward to having an uneventful weekend!!!

Wednesday, January 9, 2008 7:15 PM CST

So far so good at home. Owen is feeling pretty good. Still gets into good coughing blasts in first thing in the morning and then at night which is pretty normal with any illness. He has to do an inhaler every 4 hours and then uses another device to help keep his lungs moving. It is one of those plastic blow things where you have to keep the disk in the smiley face area by sucking in air. Its gets him coughing but it is a good cough. They have stopped all chemo, they did not want the chemo lowering his counts (as it did the first night it was resumed) so that he can continue to get stronger and over this infection. I will do a blood draw on Monday and if all is well he can resume chemo and be back to school. He didn't get up till after 10 today and then took a couple hour nap, but felt good otherwise.

Now to continue with the ever going saga at our home... Tyler is sick. Chris had kept him home Monday as he felt warm and had a low temperature. Then he was fine all day. Tuesday he came home from school, wasn't really running a temp but was very loagy and not wanting to do anything. But by 4:30 he had spiked a fever. He took motrin and then perked right up and was in a great mood again. He woke up in the night and just wanted me to cuddle with him. He wasn't warm but just very clingy. By 6am he was burning up 103.4 So he was home bound today. I gave him medicine before I left and he was fine all day, playing and in a great mood, no more fevers all day. Then at 5pm - he spiked again 102.6 What the heck!!! So not sure what is going on but he has some bug. I have not taken him to the doctor and unless some other symptoms start or his fever continues I most likely won't - they always tell me a fever with no other symptoms is viral and they don't do anything. Plus I would look pretty silly bringing this very happy little boy in there and saying - honest he gets sick at 5 o'clock!

So hopefully Owen doesn't pick this up and can recover and Tyler gets over this. And we hope Jake stays clear of them both!!!

I have to tell you a Jake story - he is such a trip! Now we have our fridgerator decorated with various things they bring home from school each day. Plus a wall in the play room sports many others. So I don't keep everything and throw some away... Well Jake caught me. Yesterday I had ditched a couple things he had brought home, but they were half colored pictures and stuff. First he saw the top one... "MOM!!! You put my picture in the garbage!!" So I apoligize and say I must have done it by mistake. Nope caught again - he saw another underneath that one and then another!!! "Jesus - what is wrong with you!
These are mine, you don't throw them out" I was half laughing and half in shock of what he said! Gets that from his Dad!

Heres to hoping tomorrow is a healthier day for all!
Have a good night!

Tuesday, January 8, 2008 11:00 AM CST

We are going home!!

He will be going home on an inhaler and we waiting for pulmonary to come in and review it with us. His ANC dropped from 900 yesterday to 500. They are unsure if it is due to starting his 6MP chemo last night or still part of his infection. But they feel he is strong enough to go home. I will continue to check counts at home and he will do the inhaler for the next several days. I will get all the details with the discharge but wanted to let you all know, now I need to pack and be ready to roll!!!

Monday, January 7, 2008 3:27 PM CST

Things are going ok. Owen is actually feeling good. He starts out with alot of coughing in the morning but by after that he isn't coughing too much. He still sounds very crackly and they gave him a neubulizer treatment today. They have also changed his IV antibiotic to oral, so he is on 2 oral antibiotics now and no IV. The doctor will check back later to see how he is doing and if she will let us go today, but most likely we are here for the night. His chemo pills have also been held since he had low counts. His 6MP will resume tonight. Doctor said they would like to make sure it is due to the infection that his counts fell not due to chemo. I really don't see how it could be the chemo since he has been tolerating that very well later and for the chemo to crash him in 1 week (plus the fact that he was on steroids) does not seem likely.

He just finished his breathing exercise and it barely caused him to cough!!! This morning it caused all sorts of coughs. I think part of that is that it is morning and everybody feels worse first thing in the morning. Granted this is at 10:30 so the Doctor is probably thinking he should have been up for a while - but this is Owen and hospital life. 10:30 is getting up early for him!!!

We went for a walk to the cafeteria tonight just so he could get out of the room. He is getting stir crazy. Due to his MRSA he is not allowed to leave his room at all now - even if he gowns up. Not even to just walk the hall. So 'walking' around a small hospital room really does get you going... so he was very excited to get off the floor for a bit.
We forgot we had unplugged him earlier in the day to move about for tutoring, so as we were hanging in the hospital store - the low battery signal went off!!! So our escape was short but still enjoyable. I told the nurses we were just p;ulling into Carousel Mall when the beeper went off..LOL

I'll let you know if we are able to get booted tonight!

Sunday, January 6, 2008 5:38 PM CST

NUCOR BLOOD DRIVE - TUESDAY JANUARY 8TH - 9AM - 2PM. CALL ME TO SIGN UP (258-4205) OR JUST COME TO THE SWITCHBOARD AT NUCOR AS A WALKIN.

PLEASE CONSIDER GIVING BLOOD - THE HOLIDAYS AND WINTER THE SUPPLIES RUN LOW AND EVERY PINT COUNTS. ALL DONORS WILL RECEIVE A FREE 1 POUND OF DUNCAN DOUNUTS COFFEE!!

CALL TODAY!!!!!

Today started out rough. Owen's Oxygen stats were lower than desired (91-94) and he was coughing alot. He had a low grade fever 38.2 (100.6) and just didn't feel great. His lungs have alot more crackle in them. We got him up moving, showered, and he is doing breathing exercises to get productive coughs. By late morning his O2 was back to 98 and he was feeling much better. His WBC has gone from .2 to .4 and today 1.2 so making progress. His ANC has crossed the magic 500 mark. I think if he hadn't started out so rough this morning we would have been discharged today. So hopefully tomorrow or tuesday.

Chris brought Tyler and Jake up for a visit today. We played ALOT of Hungry Hungry Hippos! Then Tyler relaxed in the kid recliner, played the guitar and was singing up a storm he was so cute! He then sat back and watched - cracking up laughing as Jake and I played dodge ball. We were lucky we didn't get in trouble... I don't think the playroom is an approved dodge ball zone!

They were very sad when it was time to leave and cried most of the way as I walked them down. It is so hard on them. Chris and I had discussed me going home tonight and he would stay the night, but after the rough start this morning I was not comfortable with leaving.

Glad the day improved and looking forward to a better tomorrow! Have a good night!

Saturday, January 5, 2008 9:53 AM CST

NUCOR BLOOD DRIVE - TUESDAY JANUARY 8TH - 9AM - 2PM. CALL ME TO SIGN UP (258-4205) OR JUST COME TO THE SWITCHBOARD AT NUCOR AS A WALKIN.

PLEASE CONSIDER GIVING BLOOD - THE HOLIDAYS AND WINTER THE SUPPLIES RUN LOW AND EVERY PINT COUNTS. ALL DONORS WILL RECEIVE A FREE 1 POUND OF DUNCAN DOUNUTS COFFEE!!

CALL TODAY!!!!!

Definately NOT a good start to the New Year. Owen has been admitted to 7H. He has pnuemonia!! The good news (if you can call it that) is that it is not bad, in his lower lungs only.

Owen quickly went from the 101 temp to 104.4 yesterday after talking to Chris. I had called the doctor so when they called back I let them know how high he was. His blood pressure was ok, heart rate was high (137) which could be from the fever and O2 stats were 96. They ok'd giving him Tylenol and we were off to the ER. The doctors ordered a chest xray as they thought they heard a crackle in his lungs. We were all assuming his counts would be good since he had WBC of 2.6 last thursday and had been on steroids for 5 days. So it was quite the shocker when they came back that Owen was WBC .8!!! So automatic admit to 7H. We didn't arrive on 7H until 12:45am and were exhauted. Around 2 (i think) they did a flu wash to check for the flu as well. Owen had wanted the IV out of his arm as it was really hurting him. However they didn't want to remove it, in case his port came back infected or he got worse during the night and they needed the IV line. Not a comforting thought... been there before!!! However Owen did make it through the night with no complications. He has not spiked a fever since 1am but is on the verge now (37.9 or 100.2). They have ok'd getting the IV out now as it is starting to hurt again - but are waiting for the doctor to make rounds and ok it.

He is on an antibiotic, so for now it is the waiting game for the antibiotics to go to work and his counts to return. I will keep you posted....

Saturday, January 5, 2008 9:53 AM CST

NUCOR BLOOD DRIVE - TUESDAY JANUARY 8TH - 9AM - 2PM. CALL ME TO SIGN UP (258-4205) OR JUST COME TO THE SWITCHBOARD AT NUCOR AS A WALKIN.

PLEASE CONSIDER GIVING BLOOD - THE HOLIDAYS AND WINTER THE SUPPLIES RUN LOW AND EVERY PINT COUNTS. ALL DONORS WILL RECEIVE A FREE 1 POUND OF DUNCAN DOUNUTS COFFEE!!

CALL TODAY!!!!!

Definately NOT a good start to the New Year. Owen has been admitted to 7H. He has pnuemonia!! The good news (if you can call it that) is that it is not bad, in his lower lungs only.

Owen quickly went from the 101 temp to 104.4 yesterday after talking to Chris. I had called the doctor so when they called back I let them know how high he was. His blood pressure was ok, heart rate was high (137) which could be from the fever and O2 stats were 96. They ok'd giving him Tylenol and we were off to the ER. The doctors ordered a chest xray as they thought they heard a crackle in his lungs. We were all assuming his counts would be good since he had WBC of 2.6 last thursday and had been on steroids for 5 days. So it was quite the shocker when they came back that Owen was WBC .8!!! So automatic admit to 7H. We didn't arrive on 7H until 12:45am and were exhauted. Around 2 (i think) they did a flu wash to check for the flu as well. Owen had wanted the IV out of his arm as it was really hurting him. However they didn't want to remove it, in case his port came back infected or he got worse during the night and they needed the IV line. Not a comforting thought... been there before!!! However Owen did make it through the night with no complications. He has not spiked a fever since 1am but is on the verge now (37.9 or 100.2). They have ok'd getting the IV out now as it is starting to hurt again - but are waiting for the doctor to make rounds and ok it.

He is on an antibiotic, so for now it is the waiting game for the antibiotics to go to work and his counts to return. I will keep you posted....

Friday, January 4, 2008 3:43 PM CST

NUCOR BLOOD DRIVE - TUESDAY JANUARY 8TH - 9AM - 2PM. CALL ME TO SIGN UP (246-2582) OR JUST COME TO THE SWITCHBOARD AT NUCOR AS A WALKIN.

PLEASE CONSIDER GIVING BLOOD - THE HOLIDAYS AND WINTER THE SUPPLIES RUN LOW AND EVERY PINT COUNTS. ALL DONORS WILL RECEIVE A FREE 1 POUND OF DUNCAN DOUNUTS COFFEE!!

CALL TODAY!!!!!

Well it was a short lived healthy 2008.

Owen missed 2 of the 3 days of school this week. Wednesday he was just exhausted all day. Chris dragged him to therapy on wednesday... he slept the whole way there, slept in the waiting room, and was practically falling asleep in the session. So Chris opted to keep him home, and then Owen slept until 1 when Chris made him get up so he could sleep wednesday night. Thursday he did go to school, but said he started to feel crappy part way through. Last night he spiked a fever of 102.5!!! I know he has counts so I played devils advocate and did not call the doctor - as it was 11pm when I got home from Mom's Night Out (GREAT TIME) and found out he had a fever. So I didn't want to head back to the ER just to be told he has counts and to come home...

Today he has laid in bed basically all day. I called several times and he has not been up but is not drinking or eating. He has just spiked a fever of 101. So I guess I will call the doctor, I think it is still just this bug he can't shake....

Friday, January 4, 2008 3:43 PM CST

NUCOR BLOOD DRIVE - TUESDAY JANUARY 8TH - 9AM - 2PM. CALL ME TO SIGN UP (258-4205) OR JUST COME TO THE SWITCHBOARD AT NUCOR AS A WALKIN.

PLEASE CONSIDER GIVING BLOOD - THE HOLIDAYS AND WINTER THE SUPPLIES RUN LOW AND EVERY PINT COUNTS. ALL DONORS WILL RECEIVE A FREE 1 POUND OF DUNCAN DOUNUTS COFFEE!!

CALL TODAY!!!!!

Well it was a short lived healthy 2008.

Owen missed 2 of the 3 days of school this week. Wednesday he was just exhausted all day. Chris dragged him to therapy on wednesday... he slept the whole way there, slept in the waiting room, and was practically falling asleep in the session. So Chris opted to keep him home, and then Owen slept until 1 when Chris made him get up so he could sleep wednesday night. Thursday he did go to school, but said he started to feel crappy part way through. Last night he spiked a fever of 102.5!!! I know he has counts so I played devils advocate and did not call the doctor - as it was 11pm when I got home from Mom's Night Out (GREAT TIME) and found out he had a fever. So I didn't want to head back to the ER just to be told he has counts and to come home...

Today he has laid in bed basically all day. I called several times and he has not been up but is not drinking or eating. He has just spiked a fever of 101. So I guess I will call the doctor, I think it is still just this bug he can't shake....

Friday, January 4, 2008 3:43 PM CST

NUCOR BLOOD DRIVE - TUESDAY JANUARY 8TH - 9AM - 2PM. CALL ME TO SIGN UP (258-4205) OR JUST COME TO THE SWITCHBOARD AT NUCOR AS A WALKIN.

PLEASE CONSIDER GIVING BLOOD - THE HOLIDAYS AND WINTER THE SUPPLIES RUN LOW AND EVERY PINT COUNTS. ALL DONORS WILL RECEIVE A FREE 1 POUND OF DUNCAN DOUNUTS COFFEE!!

CALL TODAY!!!!!

Well it was a short lived healthy 2008.

Owen missed 2 of the 3 days of school this week. Wednesday he was just exhausted all day. Chris dragged him to therapy on wednesday... he slept the whole way there, slept in the waiting room, and was practically falling asleep in the session. So Chris opted to keep him home, and then Owen slept until 1 when Chris made him get up so he could sleep wednesday night. Thursday he did go to school, but said he started to feel crappy part way through. Last night he spiked a fever of 102.5!!! I know he has counts so I played devils advocate and did not call the doctor - as it was 11pm when I got home from Mom's Night Out (GREAT TIME) and found out he had a fever. So I didn't want to head back to the ER just to be told he has counts and to come home...

Today he has laid in bed basically all day. I called several times and he has not been up but is not drinking or eating. He has just spiked a fever of 101. So I guess I will call the doctor, I think it is still just this bug he can't shake....

Tuesday, January 1, 2008 3:26 PM CST

Happy New Year Everyone!!!! And boy are we hoping for a much better and healthier year!

Owen is still hanging onto his cold. Just can't seem to shake it. Mine took a turn for the worse and I was up at 4:30 Saturday with a coughing fit and just felt horrible all day. I took a nap in the afternoon and was in bed early. Sunday I was feeling ok - guess I just needed a day of total rest. Owen on the other hand is frustrated that he is still coughing. He says he doesn't understand how I got better and he is still sick. He is doing ok, but is taking a nap everyday.

Last night Tyler and Jake went to Grandma Pats and we stayed home and just had Ken, Sue and Dan come over. Dan and Owen played the Wii in his room until midnight and then came down to ring in the new year. Owen had a sip of champagne and hated it - so thats good! We were in bed a little after 1 but Owen had a restless night. He was up at 6 and then again at 8 for good. He has taken 1 nap already today and is laying down again now. Being on steroids doesn't help as he is even grumpier with his cough and being tired. I am hoping the steroids will help beat his cold as his white count will be higher.

Owen came with me to pick up Ty and Jake and we all headed out to breakfast with Grandma Pat. We came home and I took down the Christmas tree the last of the christmas decorations. Tyler waved good bye to the tree as it was hauled down to the basement.

We have an SU game tomorrow and then Mom's night out is thursday so I am looking forward to getting back to that - I missed Decembers.

So as we head into 2008 we hope to resolve Tylers thyroid issues, Kick Cancers Butt for good this time and just enjoy a much quietier year. We want to thank all of you for continuing to support us!! 2007 had many ups and downs especially the first half of the year and we are happy to leave it behind. Hope all your wishes for the new year come true too!!!!

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