|
||||||||||||
Click here to go back to the main page.
Thursday, March 13, 2008 11:11 AM CDT
Hello ~
What a beautiful day here in Minnesota. It may hit 50 today! This is a lot of Spring fever and cleaning happening around here. Oh, did I say cleaning, I mean tossing because it is garbage day! I hope to get one more bag out before they come so I hope to make this quick.
Shane had an appointment on February 26th and once again he got the 'all clear'! All his labs were good. So his bruising must be from him just 'being a kid' so we will continue living and enjoying life!
His Hgb was 13.9 (WoW) maybe that is were he gets the energy, platelets 165,000, WBC 4,300 and ANC 1750. His Red Blood Count was slightly elevated. I can't find the result right now but nothing was made of it so we will wait until the end of March for the next appt.
We are very anxious for Spring to come so we can open the windows and get all these germs out! Amber started with her cough the morning of his appt and by the next day she was running a fever of 103 (under the arm) at daycare no less. In the morning she was OK and was participating, but by lunch time she was crying and wouldn't stop, her eyes looked sick and she just wanted to lay on the kitchen floor with a bucket. She was afraid she would have a coughing attack and need a bucket for all the phlegm she throws up. Daycare was great and will to keep her until Dad could get her at 4pm. That night her fever continued and I had cool cloths on her and sponging her to try and get her to cool down. A few times she was talking crazy. Or once she was walking upstairs away from the kitchen and said she was going to get a snack from the fridge. She would be grabbing at things in the air and another time she sat straight up laughing, thinking the cat was on her legs! She was scarring me until finally at ~1 am her Motrin finally kicked the fever down to 102 and she was acting more like herself. Thursday her fevers continued but she looked better. That night she was up coughing most of the night with 102 fevers. I did bring her in Friday and said she had Influenza A. She never did get her Flu shot. Her lungs sounded good though. By time we were leaving the clinic she was going down and her fevers were climbing! Finally by Sunday she had her last high fever. Sorry to expose all at Daycare. Next she may not be so accomadating if she gets a fever!
Just in time for Shane to start with 102 temps, cough, chills and achey! He stayed on the couch Sunday and stayed home form school Monday and took a couple of naps. I am thankful he didn't get the high fevers. But it is hard to see him with any fever after being on guard for 3 years and having to be ready to go to the clinic or ER at a drop of the hat if a fever presented. I was glad he did get his port out otherwise he would have had to go in just to make sure it wasn't a line infection. So that was one less thing to worry about.
I then started getting achey on Monday and fevers and cough on Tues. So I took over the couch for him while he kept Amber entertained! I kept him home Tues. because he still had a fever on Monday late in the afternoon and the school prefers they be fever free X 24 hrs before returning. My cough continued until Friday. Then it turned into a lot of the sinus congestion. Samantha came home from school with a fever on Wednesday and started with the cough too. We all had the flu shot. So I think we all had a milder case then Amber. But of course the older girls were wondering why they had to get the shot if it didn't work anyways. They hate shots!
Grandma Lou Lou (my MoM) was here during all the illness with Amber and thankfully she didn't get it. She left the morning I took Amber into the clinic, but she still was exposed.
So that is about it for us. Oh yea, Shane came home after school yesterday and had 100 fever again. It is nice though, not having to know exactly what the thermometer reads anymore! We will continue praying it is nothing but a dumb old virus that is going around school!
Shane will be testing for his Brown Belt the second Friday in April. Let me know if you want to come and watch, I'll send you directions. It is free! There isn't much entertainment these days that is free! He has to break 2 boards this time!
Have a great day! Jody and Shane
Friday, February 1, 2008 11:47 AM CST
Greetings!
Check out the new pictures!
Shane had a great check up on Wednesday. His counts were good. Hgb 13.8, WBC 6.9, platelets 182,000 and a huge ANC of 4,480. WoW! His WBC nearly doubled so hopefully that is to be expected at this time. I was glad to see his ANC high especially with all the illness going around. Shane was protected from the stomach flu (so far) but now has started with a cough and runny nose.
He has some skin issues that they say are normal and related to the chemo or low immune system. He had a few molluscum on his abdomen that I removed last week-end and hopefully they won't return. He started getting them towards the end of treatment, but I felt better leaving them with his decreased immunity. He also started with some areas on his scalp that got scaley and caused him to lose his hair. This all started last August and at that time weren't concerned because 'he has lots of hair.' Well now he is being treated for ringworm. Boy is it hard to get back on a medication schedule! And lastly he started with a rash that I thought may have related to the Griseofulvin for the ringworm. But it never got hivey looking so I restarted his med. Now it has his torso looking like he had a major skin condition with the look of old scars. We hear so many things that they relate to chemo and can't help but wonder if they really are.
Shane was in a Karate tourney last Sunday and came home with 1st place trophy for his form, 2nd place for sparring and 3rd place for Bo. I missed him sparring but watched the tape and he did great. He had to spar against one and two belt levels higher than him. Good job.
Nicole, Samantha and I went to Martina Mcbride concert last week-end, courtesy of Hope Kids! It was a great concert and we had a lot of fun.
Thanks for checking on Shane!
Love, Jody and Shane
Wednesday, January 9, 2008 10:19 PM CST
Happy Birthday, Shane!
I know it is hard to believe another new journal! Check out yesterdays to get the whole scoop!
Now we have the stomach flu in our house! Nicole came in our room in the night saying her stomach was hurting and it wasn't long until we knew why. Amber was coughing up some good phlegm during the night and did have some more blood in the bucket. But this time it was smaller than a dime and many flecks of old blood. And by this morning she was also getting sick! I would have blamed it on her antibiotic if Nicole wasn't sick too. Amber has pretty much slept all day long and had no interest in fluids until tonight when she had a popsicle.
So it was just the 3 of us going out to eat for Shane's B-Day tonight. At the end of the meal Shane wasn't feeling right either, so I hope he doesn't get it too. When we left home Amber had a 103.7 fever again. I need her to eat and drink so I can give her the antibiotic. It is Erythromycin and is very hard on an empty tummy. I think I missed my chance because she is already sleeping again.
Well I better go and get a few things done. I hope know one else gets sick! This morning when I told Shane about his sisters I told him he better get out quick! He just smirked and said "I don't have to worry anymore!" He thinks it is great that he can now drink out of my glass on rare occasion. Only when he is totally parched and we have no other options. It is also weird to give him a kiss on the lips again. The last time I did that was on August 29, 2004 at bedtime. So he will surprise me and come up and give me a kiss. He is so sweet!
Have a Great Night, Love, Jody
Tuesday, January 8, 2008 2:00 PM CST
Happy New Year!
We hope everyone had a great Christmas! I know we all did. We spent the week up north at both of the Grandmas. We spent Christmas Eve at my Moms house and my brother Dave and Star came up for awhile. Christmas Day was spent at Pat's Moms. Pat's sister Kelly and husband Jeff drove here from California. Their son Justin is 13 and Katarina is 9 so the kids had a blast playing with their cousins in the snow and riding snowmobile. They went ice fishing one day but the fish were not biting so the kids just rode snowmobile and the Dads fished! Uncle Tom also made the trip with them so it was good to see him again too. The kids just love 'hanging' with Uncle Tom. On Christmas Day- Uncle Dan, Uncle Mike and Janel and cousins Kinkaid (4) and Kaeleigh (2) got to Grandmas so Amber was very excited to have some one her size to play with. Or mother or boss around, depends on who you ask! Uncle Tim and family were not able to make it and we were sad not to see them. We were wishing they could have been there!
Shane has been doing well. He went in last Wednesday for his Echocardiogram and to check counts. Pat was able to come with us to clinic since he has been laid off since the beginning of December. That was not very good timing. It was good for him to get a chance to come to the clinic again and touch base with the place.
Shane's count were good per his primary, Dr. Sencer. I on the other hand am still trying to figure them out. Why do I try to read between the lines when it comes to counts? His Hemoglobin was good at 13.0, Platelets 155,000, WBC 3.9, PMN'S 27% and ANC 1131. I guess his body is still trying to recover after treatment. Right? The good news is that his liver counts are all normal as well as his Bilirubin. So we will recheck in 4 weeks and continue praying he remains in remission.
Amber was to the doctor today and she has walking pneumonia. So she was started on an antibiotic. She has been running fevers up to 104 since Saturday night. I thought she was getting croupy but never really had the cough. Her breathing sounded so bad and she kept saying it was hard to breathe. On Sunday she seemed a bit better and went to Daycare on Monday. She only had low grade temps until Monday night then it went up again. Last night she woke up coughing and it was the one were 'you better run and get the bucket' cough. She did finally bring some up and into the bucket and it was all blood. She covered ~1/4 of the bottom of an ice cream pail. This was not what I was expecting. So she was able to lay down and go back to sleep, while I went back and forth whether or not to call our clinic. I would have not thought twice if it would have been Shane, just because that is how we have been living these last 3+ years. You go in for things like this. But I kept thinking is this Ok for someone that hasn't had cancer? So I decided to watch her all night and if she had anymore then I would take her in. So she had X-rays this morning at our clinic and that is what was diagnosed. We will continue to watch what she coughs up for any blood and if she still has some she will have to go to a Peds Pulmonary specialist. She has coughed much harder and more frequently before then that one time last night, so it is weird to have that happen now.
Samantha is up north in Finland, MN on her Environmental Learning Trip at Wolf Ridge with the 6 grade class. I am sure she is having fun. Atleast this year the weather has been much nicer than last year when Nicole got to go.
Shane will be turning 10 tomorrow! HAPPY BIRTHDAY SHANE! Where has the time gone?
Please keep our fiends who have recently relapsed in your prayers.
Kyle www.caringbridge.org/mn/superkyle
Zach www.caringbridge.org/visit/zacharywhite
Maryah www.caringbridge.org/mn/maryah
Abe www.caringbridge.org/mn/abe
And those who are fighting like the champions they are:
Tyler www.caringbridge.org/visit/tylerstolp
Erik www.caringbridge.org/mn/erikludwinski
Thanks for checking in and give your kids a great big hug!
God Bless, Jody
Monday, December 3, 2007 8:36 PM CST
Good evening ~
Shane had his first off-treatment appointment last Thursday. Exactly 1 month after he had his last IV Chemo and port removal. I think it was the longest month in my life. And it wasn't a good kind of long either. We have gone 4 weeks between appointments many times while on maintenance, since this is the normal schedule if counts are good. I didn't think I was anxious about him being off chemo for the month, but I must have been! Hopefully the next month will be better. Although I don't want the time to fly by either, because I need all the extra time I can get, especially this time of year!
Shane's counts were about the same as last month. Hgb 13.1 (12.2) WBC 2,700 (1,800) ANC 864 (882). The only one I was glad to see up was the hemoglobin. A normal person's WBC should be greater than 4,000. But in the leukemia world, we don't like a high WBC. Because that means the cells are multiplying fast and if there are blasts, they too, could be increasing. But we are not on treatment, so we do want his WBC to increase so this will be an adjustment. OK I am having difficulty putting that into words.Sorry! His ANC went down slightly, but he has been fighting a slight cough so that may explain the counts. Linda told us he is in 'recovery phase' by the looks of his differential. Of course I have gone back to the day he was diagnosed to compare results. We will check his liver enzymes next month to check for damage. I was still giving him the Milk Thistle at a lower dose, but they told me to stop and we will see where his levels are. When we go back in one month we will see Dr. Sencer, his primary. He will also have an Echocardiogram done to make sure there isn't any damage. This was the first they ever mentioned that he would need that. We are fine to have a look at his beautiful heart!
He is proudly wearing his port around his neck. And loves to show it off, so please ask to see it. I will post a picture if it turned out.
Please pray for the family of Princess McKenna (caringbridge.org/visit/mckenna). She earned her wings last week. She was a beautiful angel on earth and now is sitting on the lap of Jesus! Also Alexia from South America (caringbridge.org/southamerica/alexia). Being treated here in the states lost her battle on earth, but is now cancer free. She had numerous relapses and was a brave, strong little girl. And Bruce from Iowa, (caringbridge.org/ia/bepositive)This is a friend of my old roommate. Please leave them words of comfort during this difficult time. I just found out that another of our friends has sadly relapsed. Please pray for Kyle and his family (caringbridge.org.mn.superkyle) A Cure is needed!
Thanks for checking on us and and Merry Christmas to all!
Love, Jody and Shane
Sunday, November 11, 2007 7:34 PM CST
Good Evening!
It is so hard to believe that Shane is done with Chemo! It was so weird giving him his last pills last night. That first year felt like forever and here we are 3 years 2 months later and we are DONE! It is a great feeling but very scarey at the same time. At least when we were giving Chemo we were 'doing' something. Now we will continue praying that every last cancer cell is gone! It was extremely hard at the beginning when we heard those words that no parent should ever hear. "Your child has cancer." That was the worse. But now we don't want to hear "Shane has relapsed." This would be even harder to hear and much harsher treatment for Shane. We will hope and pray that we never hear that!
Now we will try and pick up the pieces of the last 3 years and move forward. Nicole, Samantha and Amber have gone through so much too and missed out on so much of my time. How do we make that up? I know we can only go forward from here, but it just wasn't fair to them.
It took Shane some extra time recovering after getting his port out. He stayed home from school on Monday also. Just very sore and achey all over. I know it was from the chemo too, but he just felt bad. The best thing about feeling so bad is: IT'S HIS LAST TIME he has to feel like that! God willing! No more steroids either! His incision looks like it is healing. It may be getting a little red, with a little crusty drainage. I am trying to decide if I should get an oral antibiotic for him so it can heal up nicely this time. I will probably talk to the Doctor tomorrow.
We brought red roses to Church today to celebrate Shane's completion of treatment. During the kids sermon Pastor Ron asked the kids what they were thankful for? Then he went to the flowers at the alter and pointed to Shane's and said that these are from the Killian's and that we are very thankful for his end of treatment. Then during prayers they also added another extra prayer for him. And at the end of the service Pastor Rick asked Shane to stand and everyone clapped and cheered. Of course all I did all service long was cry! It was a very emotional service for me. Many came up to him after and Congratulated him and shook his hand. What an amazing day! Word of Peace has been awesome during this journey and we can't thank them enough!
Thanks to you too for all your thoughts and prayers!
Shane will have his monthly follow up appt the end of the month. Our insurance will also be changing so that is frightening to me.
God Bless! Jody
Thursday, November 1, 2007 7:55 PM CDT
Good Evening ~
Another update as promised. Shane is home resting after having his port removed. We got home around 4 pm. He had quite abit of nausea and vomitting so isn't feeling the best. I didn't remember until it was too late that when he had his port inserted he also got sick from the anesthesia. But as soon as he started saying his stomach hurt; red flags, bells and whistle started going off in my head. Poor guy! He had to feel so miserable. They did give him Zofran and he took a little snooze and woke up a bit better. But then he pushed his luck with a popsicle. And we were back to square one. We will give Zofran tonight and fluids and hopefully he will feel like new tomorrow.
His site looks good but is oozing so much blood. OK probably not that much, but under a tegraderm dressing it sure looks like a lot. It just started oozing out of the dressing so we will wait to see what it looks like tomorrow.
His counts were a little low. Go figure, we have 10 days left of Mercaptopurine and he is running low counts. We will recheck counts in one week and see where they are. Of course the blood draws will be from the arm, since there is no port. Maybe we should have kept it in a bit longer. I wanted it gone before the winter just in case he started running fevers. This way I don't have to worry that his line is infected. His ANC was 882, WBC 1800 and platelets good at 223,000. They would cut his oral Chemo if it was below 750. So we will wait and hope his counts recover for the completion of his treatment on November 10th!!!!!! Oh yea we do have 5 days left of his Dexamethasone. I sure wish we could have skipped this, but with his lower counts it will be better that he does take it.
Shane is my hero! He has been so brave through it all. Just tonight he said to me "you know I will miss that feeling of going to sleep." He is talking about when he HAD to go to SSU to be put to sleep for his spinal chemos. We have met many great friends through our cancer journey and wouldn't have met them otherwise. We just got back last week from another great week at Camp Sunshine. Being with other Cancer families is a comfort that is hard to explain. Everyone there just 'gets it' and we don't have to explain our every thought and worry. It is hard coming back to the real world that left us behind 3+ years ago. But WE WILL SURVIVE!
Thanks for all your thoughts and prayers.
Jody and Shane
Wednesday, October 31, 2007 5:00 PM CDT
Where has the time gone? I can't believe it is going to be November tomorrow!
Just wanted to share that Shane will be getting his last IV Vincristine in the morning! WoW! Then after that he will be going into surgery to have his port removed! This is all happening too fast, even though we have known the date for 4 weeks! He will continue on oral Chemo until November 10th and his Sulfa twice a week for 3 more months. I have tried not to think a whole lot about it because it scares the life out of me. We have done what we were told to do medically for 3 years and 2 months and now we move on to a new chapter in our lives. It is a very happy time and that is what we want Shane to know!
Please join us in prayer that all the "bad" cells are gone from his body and he will be cured on earth! He is so amazingly strong and has done so well through all of his treatment. His cancer journey will only make him a better man and he will continue to make us proud!
Shane has to be at Children’s Hem/Onc clinic at 8:15 for Chemo and his history & physical, then to out-patient at 8:30. I am not sure how that will all happen in 15 minutes in the medical world?! I think his surgery is scheduled for 10:30.
I will update tomorrow after Shane is home and recovering.
God’s Blessings to You,
Jody
Monday, April 30, 2007 3:04 PM CDT
Hi everyone!
Please remember no news is good news! I am sorry for keeping everyone wondering what Shane has been up to! I will admit I wasn't sure if I knew his password to get on his page to update! I don't want his journal to lapse this long again. It will also be used to go in his scrapbook and now the last 6 months are not recorded and will have to be updated from my memory! Which isn't the best!
Shane is doing very well! We just found out that NOVEMBER 10, 2007 is his last day of treatment!!! We are so excited! Can't believe it is only 6 months away! Never thought this day would come. It is really scary knowing that the day is coming that I won't be giving him any more Chemo! It sure sounds weird but as long as I am giving him his pills everyday, I feel like I am helping him fight this awful disease! Things have nearly gone by the book except for a few delays, a couple of hospital stays and elevated liver tests.
He is now a purple belt in Karate with his sister Samantha. They can now add another class and he is more than happy to be able to go more often. He is learning more self defense techniques and a routine with a Bo (a long stick that he can use as a weapon). Although he hasn't been going as much as he did, he still definitely enjoys it!
His Chemo is going well and he is still tolerating his 100 percent dose. Counts have been very good. Sometimes too high and they talk about increasing his oral doses. But then his counts are back to where they want them and things stay the same. He has had some fevers, coughs, colds and stomach flu bugs this winter, but has been able to fight them off himself. I hate to even type this but we have been able to avoid the late night run to Children's. For which we are very grateful!
Shane also signed up for Baseball this year and can't wait to get started! He has been practicing alot! I think he justs gets a kick out of watching me go after the balls!
He is also doing a musical at Word of Peace Church on May 5 at 7 pm if you would like to come. Shane and Samantha are both in the children's choir and will be presenting "Oh, Jonah" It sure is cute!
We are now participating in a group caled Hope Kids. They are keeping us busy with many different activities. We have gone to the Minnesota Swarm, Disney on Ice, Harlem Globetrotters, Children's theater and Stages plays. We went to Beauty and the Beast musical at Burnsville HS and it was amazing! We have had 3-M Box seats at the Swarm, which was totally catered and also Box seats to see the Girls Gopher Basketball. They have partnered with the U of M athletes so we have had the priveledge to meet many athletes.They also offer one movie a month with free popcorn and pop. They hold this event in the morning, before the theater opens to the public to decrease the germ exposure for those that have low ANC's. I can not say enough about this organization. They provide hope to cancer families and others with life threatening diseases. We have met many new families, but also get to reconnect with those we have met before.
Well I better get going! Please remember Amber Dugan in your prayers. We met her at Camp Sunshine and she has relapsed and is doing great in treatment. Also Luigy from Camp who is at home with his family. His family was told what no parent should ever hear "there is nothing else we can do." Please pray for strength. His father has been off work for the last 2 months to spend every minute with him and is now concerned with the finances. If anyone is able to help or would like to send a card you can e-mail me and I can send you the info.
Thanks for checking in and actually see something new!!!
Love, Jody and Shane
Sunday, January 7, 2007 7:09 PM CST
Shane has been doing very well these past few months. He has been very tired though, but he has been trying to have fun alot through the winter so far with his sisters and friends. Christmas was fun, he got a Nintendo DS from Santa Clause, some shoes called Heelys from dad and I. On new years eve we stayed up until about 1:30 a.m. the kids played in the snow until then. P.s. this is Shane typing.
Thanks for checking and Happy New Year!
Monday, December 18, 2006 10:54 PM CST
Merry Christmas!
I am working on an update, but some of our caringbridge friends need some prayers. They have all relapsed again. Please pray for their healing on earth and strength for their families.
Donovan ~ caringbridge.org/in/babydonovan/
Eric ~ caringbridge.org/mn/erikludwinski/
Noelle ~ caringbridge.org/wi/noelle/
Thank You! Jody
Thursday, September 28, 2006 11:11 AM CDT
Hello ~
Just a quick note to invite you to Shane's 2 year celebration this Saturday at 3pm. Very last minute planning, but we do have lots to celebrate. We would love to see/meet you if you can make it. It will be potluck and beverages will be supplied.
Thanks! Shane and family
Tuesday, September 19, 2006 10:07 PM CDT
Good Evening!
Shane had another appt today since he his still running fevers. At supper time last night his temp was 103.9 so I called and they said to give Tylenol and call with an update in 2-3 hours. His temp did go down to 101.8 and they felt good enough to let him stay home since we just had counts done. I gave him some more Tylenol at 11 pm so he could make it through night.
I called with an update this morning and they wanted to see him again. When we got to the parking ramp he told me it was hard to hear with his right ear. It felt plugged at times. So then I thought maybe we had our answer to these high temps. We saw someone new today and she ordered a Chest X-Ray, blood counts, blood cultures and IV antibiotics. His ear was infected with a lot of pus and numerous visible blood vessels that I have never seen in an ear before. So I felt a little better knowing of this infection. She would start him on Amox twice a day for 10 days. They still feel his high counts are this infection process.
Amber started gymnastics tonight. She did great. She was the oldest in her class since she will be 3 next month. When we got home Pat said Children’s had called and needed to change a few things. They saw pneumonia on his X-ray so they need to start 2 different antibiotics, Zithromax and Avalox. He continues to cough and his temp was 101.2 at 9 pm. So we are hoping the 2 IV antibiotics were enough to get a jump start on the pneumonia and his oral will take care of the rest. We need his lungs to stay healthy and undamaged with all the chemo he has taken and still needs. And we need his liver to remain functioning without damage.
He will stay home from school again tomorrow and hopefully get some extra rest. He usually feels OK when his temp stays below 101. But this morning he did look pretty rough. His head was hurting and it made it worse when he had to stand up. He slept oall the way to Children's so he looked a little better when we got there. He still hasn’t complained of ear pain. His appetite has decreased some, but maybe when the temps go away this will return.
He was due to go into Short Stay tomorrow, but they have cancelled that due to the pneumonia. He will go back into clinic on Friday for a recheck. We will continue to monitor his temps and breathing.
Thanks for stopping in and all your prayers for Shane.
God Bless! Jody
Monday, September 18, 2006 7:31 PM CDT
Good evening!
On Saturday night shortly after 10pm we had a F2 tornado go through Rogers. The kids and I got home about 9 from a great day at Valley Fair. We were home playing with the 10 baby hamsters and I turned the TV on to catch the news because it had started raining and the sky was totally lit up by the lightening. There were storm warnings running across the bottom of the screen and then the power started flickering and went out. I was prepared with the oil lamp this time so we were not left in the dark. It was raining pretty hard so I went around and closed the windows some more because the rain was coming in. I didn't think the wind was that bad until my friend called my cell after 11:00 and asked if we still had a roof? I thought it was odd for her to still be awake, let alone calling me at that time. I said we were sitting in the dark playing games. It was then that she told me of the horrible storm that went through Rogers and a girl was trapped in her home under the debris. I couldn't believe it could have been that bad, because we are only 1 mile from the closest point of the tornado damage. It proved to be a deadly storm as they were unable to revive the 10 year old girl from Rogers. Her parents were out of town and had to be called home. We did not know the family, but they are in our prayers. How devastating! The neighborhoods are blocked off and only clean up crew and home owners are allowed in. It has always been so hard to see the devastation on TV when they show coverage of other areas or states. But seeing your own town and neighborhoods torn apart with your own eyes was so much worse. I can't imagine what they are going through. The tornado came up so fast that the weathermen didn't even see it on the radar until it was through Rogers and on to the next town. 6 other people were sent to the hospital for treatment and 2 had to be admitted for injuries. My neighbors didn't know anything had happened in town until the next morning. So it wasn't just me. It sure is unbelievable they weren't more injuries or fatalities from the storm.
Shane and Samantha tested and earned their green belt last Friday night and were very excited and proud. Nicole also signed up for a month and tested and got her yellow stripe. Way to go guys!! It is so exciting to watch them, they have worked so hard! The next testing for them will be in December for their blue belts. They have to be a green belt for atleast 3 months before testing. They will be learning a new form with this belt and Shane already thinks he has it down just from watching. I am sure he does!
Shane was on the front page of our local newspaper this week! It was a nice picture of him and his Karate instructor and a Make-A-Wish balloon. It was really neat. I drove all over town to try and buy all the papers but only one station carried them and they were all gone. I had Amber with me so we were in and out of the truck many times. When we got in the truck I would say "no newspapers there." She would repeat "no newspapers" and one time she said "no newspapers, no new scissors" I think she was still doing some school supply shopping! She comes up with the funniest things!
Shane has still been running fevers. I don't check it daily anymore since I am not suppose to worry about it. Yeah, right!! Well yesterday it started going up and by 8 last night it was 101.6 so I called and talked to Dr. Sencer and she said to go ahead and give him Tylenol and call back if his condition worsens or it keeps going up. He has had the sniffles and cough starting. So I was up and down all night feeling his forehead and at 3 am it was 100.8. By 6 am it was 103.1 so I gave him more Tylenol and called the clinic at 8:30 and they wanted to see him for blood cultures and counts. They gave him some IV antibiotics and by time we left the clinic it was 102.6. I am not sure what I think about his blood results. His WBC was 6,700, Hgb 12.0, plt 223,000, and ANC 4,690. His WBC last time was 1,800 and usually stays around that. When he was diagnosed it was 5,800. So now it is higher than that and I am not sure why? Or what I should be thinking! Tonight his temp went up to 103.6 and I gave him some Tylenol and called the on call and I am suppose to call and update her again tonight.
Please say some extra prayers for Shane that this is just a 'normal' illness and for Shane to remain in remission and live a long cancer free life.
Thank You and God Bless You!
Have a good night! Love, Jody
Saturday, September 2, 2006 1:16 AM CDT
Good Evening!
My computer has not been working right, but hopefully I can get this update added without any problems. I will be saving this one often as I type!
We are doing well and Shane’s bone marrow biopsy came back normal and we are very Thankful! We haven’t heard on his chromosome study so hopefully this too is good news. He went in to clinic last Wed. for his Vincristine and once again had a low grade temp. I do feel better about the temps knowing his marrow is good at this time, but why the fevers? Dr. Nelson was not concerned with the temp. He was the very first Dr. we met when this all began. He has been great along with all the others. It was 2 years on Tuesday since this all began. Shane has gone through it all so bravely! Earlier this week he was having some low back pain which had me thinking again, but hopefully this was from sleeping on the couch. But it is hard not going back to those first feelings of fear. Shane’s counts were good on 8/23. Hemoglobin 11.2, platelet 280,000, WBC 1,800 and ANC 900.
We have started the Milk Thistle to help his liver function better. Of course these are 2 huge capsules he has to take daily. He likes to chew everything, so I open the capsules and put them in a liquid and he drinks it down. He also started some Melatonin (herb) to help him sleep when he takes his steroids and I think this has worked.
We had a great trip to Las Vegas and California! Thanks to Uncle Tim and Auntie Kelly for opening their homes up to us. I flew out to Vegas with the kids June 17th. The kids were very excited about the flight. Much more then I was! We hadn’t started down the run way yet and Amber looks out the window and said “I want to go higher!” We made several trips to the bathroom mostly because she was afraid to sit down and then wouldn’t go! She climbed the walls when we flushed. Uncle Tim picked us up and we drove down Las Vegas Blvd to see all the lights. The kids just wanted to go ride the roller coasters! We went back to his house and met his son Toby (11) for the first time ever so the kids thought that was great. Tyler (2) was sick in bed with a fever so we would have to wait to meet him and his Mom, Anna till morning. Teddy (15) and Kristin (13) were gone for the week-end. We were going to bed that first night and I nearly forgot to give Shane his Chemo! I felt like we had left that part of our life back in Minnesota! Amber was excited to meet Tyler the next morning and they played well together. We rented a car and drove to Palm Springs. Lots of scenery and many overheated cars on the side of the road. The temp was 113! There were signs that said to turn your air conditioning off to prevent overheating. Of course I didn’t, because I thought the kids might be safer if their Mom didn’t overheat! The drive went well and the kids enjoyed the rental car and when we got to Auntie Kelly and Uncle Jeff’s they had supper waiting for us. This was a dream as far as I was concerned! The kids couldn’t get out of the car fast enough to see their cousins, Justin (12) and Katarina (almost 9). They moved into a beautiful new home last year and it was just perfect! They took very good care of us and a MILLION THANKS are not enough!
We spent the week swimming in their pool, visiting an air museum, going to Knott’s water park, visiting Uncle Tom’s golf course, shopping at the Mall and of course a trip to the library for Nicole to stock up on some books. On Friday we drove to San Diego to pick up their Dad whose was flying in later that night. The trip over the mountain was a little rough on the kids from Minnesota! Shane rode with Uncle Jeff and Justin and almost made it to the top of the mountain and got sick. Us Girls were in the suburban and Nicole and Sam said they were feeling sick and then Amber started saying it too. I guess I should have believed her because she started coughing and then threw up. We then stopped so Nicole and Sam could get some fresh air and walk around for awhile. I guess the curves and altitude were too much for them. Amber got sick once more when we were heading to the airport to pick up Daddy, so Auntie Kelly took her and got her cleaned up. She started running fevers up to 103 for the next few days. It did come down with Tylenol. We went to eat at Joe’s Crab Shack and the kids played in the ocean while we waited for our table. We spent the next day at the Beach and watched the kids play in the ocean for the first time. That night Pat, Jeff and Justin went out on a chartered fishing trip till the next night. I was hoping the waves wouldn’t be too much for Pat. We watched Sea Worlds fireworks from their boat they have docked at Mission Bay. Beautiful weather and it even felt cool compared to Palm Springs. Nicole spent the night with Kelly and Katarina on the boat. She slept well on the water, but I shouldn’t be surprised because she loves the water and is as close to a fish as you can get. The next day we went to Lego Land and had a great time of course! The guys made it back safely Sunday eve and the waters were pretty rough on Pat. He would do fine when he was busy fishing, but otherwise he didn’t do so well. He did take some motion pills before he left but they didn’t do much. He didn’t get a fish in the boat, but they did bring some back. On Sunday we went to Sea World and had a beautiful day with Shamu. Monday we headed back to Kelly’s and stopped at San Diego’s Wild Animal Park. When we got back to Kelly’s house once again supper was waiting for us. Lobster tail and Albacore Tuna from their fishing excursion.
Samantha started with fevers and headaches Monday and Nicole on Tuesday lasting until late Wed. night. We were planning a Disney Land trip on Thursday so we went to bed early with hopes on waking fever free and they did! Uncle Tom, Justin and Katarina came with us while Kelly stayed behind with Amber and did some shopping. She got a new baby and stroller! Thanks Auntie! It was a hot day at Disney and we rented a wheel chair for Shane and I am glad we did because all the walking and heat was taking its toll. We rode many rides, watched the parade and fireworks and started for home. It was a hot, long day but we had a blast.
On Friday Kelly drove us back to Las Vegas so she could catch a flight back to Minnesota on Sat. am to be with Grandma Dottie who was in the hospital. She had a kidney infection with a viral infection too which they found out to be positive for CMV. She also kept spiking fevers and needed many blood cultures drawn.
While in Vegas, we went on a tour of Hoover Dam and the next day we spent at Lake Mead. We went to the Bass Pro shop and casino. Walked the strip with our kids and finally got back to Tim’s after midnight one night which was 2 am Minnesota time. Our schedule was way off the whole trip. Pat went for a ride with his brother on his Harleys. Amber wasn’t too sure if she should let him go on that noisy bike. We haven’t seen Tim for 6+ years. We finally got to meet Teddy and Kristin this visit too. Our flight out was on July 4th and wouldn’t you know it Shane started with the fevers on July 2nd! I called Children’s and Dr. Sencer was on call and she felt fairly confident that he probably had what the girls had and said we could let his temp go up to 103 before going in to get blood cultures done. I could give him Tylenol but be prepared if we had to go in to be checked. He only got as high as 101.9. Dr. Sencer is familiar with Vegas because her parents live there so she knew were we should and shouldn’t go to be seen.
The kids and I were gone 2½ weeks and it was a long time over due vacation for all of us. When I got back I felt refreshed and able to enjoy life again. I had a renewed energy.
Shane’s Make-A-Wish presentation was a night we will never forget. Thank you to everyone that was able to make it. Shane did not know what was about to happen. All the students did their belt testing and received their new belts. Their instructor, Mr. Ramacher from PKS in Rogers, asked them to take a seat on the floor in front of him for a minute. He then asked everyone “If you could have one wish what would it be? Would it be a trip to Disney World or to meet someone famous or a Best Buy Shopping spree?” He then asked Shane to come up front with him and told his story. He gave Shane a gift to open and it was his Black Belt Club uniform with his name on it. Shane was very nervous and barely moved a muscle. There were many tears shed in the audience and lots of love for our little boy. The head Master came up and shook Shane’s hand and congratulated him on his wish and dedication. Make-A-Wish gave Shane 5 years of Karate, his sparring gear and a Bo. Mr. Ramacher also gave Shane 4 years in the Master Club which will take him to a 4th degree black belt. Wow, 9 years of hard work and dedication! We then moved outside the gym for cake that Make-A-Wish brought for us all to enjoy. But before this Mr. Ramacher stood up front and presented Shane with another gift and on the outside read ‘I will keep this one for awhile’ and inside was Shane’s Black Belt with S.T.Killian stitched in red. We then watched a slide show of pictures of Shane and family. Mr. Ramacher picked 2 special songs for the background on the DVD. He then concluded the pictures with a taped message from him to Shane. It was an extra special touch and a gift of a lifetime. I will try and post his message another time when my entry isn’t so long, because I would love to share it with all of you. Maybe I could even figure out how to get the DVD to play here. Now that may be asking a lot!
I want to thank Mr. Ramacher for making Shane’s wish presentation so special. It was much more then we ever could imagine. I know he spent a lot of time and sleepless nights so nothing would be forgotten. Thanks to Dawn Kreft for her many hours of work on the video and for taping during the presentation. Thanks to Make-A-Wish for making Shane the happiest boy in the world! They are a wonderful group of people all doing great things!
Shane and Samantha also sang the Oscar Mayer jingle and you can watch them online at www.singthejingle.com and enter code ESGR5X for Shane and EKPDAN for Samantha. They were both very nervous, but did a great job.
We borrowed my Aunt and Uncles motorhome to go 'camping' a few weeks ago with 3 other couples up by Alexandria. The kids thought that was a lot of fun riding in and I enjoyed staying dry that first night! Even though we sat out by the fire in the rain. Thanks Vic and Judy!
Make-A-Wish had their family reunion at The Park at MOA last week-end and we all had fun. We had a lunch, goodie bag and all the rides for the day thanks to Glaxo Smith Kline and General Mills for their generous donation. We hung out with Portia and family. The girls roomed with Portia and Paris at Camp Courage and Shane stayed with Joshua. It was good to get them together again. Thanks for hanging with us!
We have signed up to go to Camp Sunshine this year at Jelly Stone Park in Wisconsin. It starts the Sunday before MEA and ends that Friday. It sounds like a blast from those who have gone before. It is a week packed with activities for the kids and adults. We get a golf cart to use to travel around the park. I guess they have a huge in door Water Park too!
We had Open House this week and met all the teachers. Nicole will be going to the middle school this year and will have to catch the bus at 6:56. I am not sure who is dreading it more Nicole or me! Samantha has Mrs.Buerman and Shane has Mrs. Pace. They are ready for school, although Samantha will have 3 days of testing right away.
Pat took the kids to the Twin’s game this week and had great seats. They were 11 rows up from home plate. He only had 4 tickets so I sat this one out. He got them from a concrete company at work that has reserved seating. Thanks for thinking of us. Now with the Vikings playing Shane would love to go see them too.
Have a safe Labor Day week-end! Love Jody
I will try and get some pictures added!
Wednesday, August 16, 2006 10:56 PM CDT
Good Evening!
I have lost my update!! I could just scream! My computer froze and of course I didn't save it, before I had to shut it down! I do know better. So who knows when you will see the update. I only had to add a few things and it was done! Maybe lucky for you it will be a more condensed version.
Shane did have his Bone Marrow biopsy and aspiration this morning and did great! I stayed in the room this time to watch and everything went great! His counts were up a little (of course) and we increased his 6 MP.
The office called earlier and told Pat there were no results yet, so of course you know what I am thinking. They did tell Pat not to worry and it doesn't mean anything that they are not done yet. I will update more when I know. They did say I wouldn't hear anything on the biopsy until Friday.
We left the Hosp. at 10:45 and he was in Karate class at 12:15 and 4:45. His hip was a bit sore and wasn't able to do the leg lifts in class, so he did push-ups instead! He totally amazes me in everything he does.
If anyone has ideas on how to find my lost update in Microsoft Word, I would love to hear from you. Otherwise I will try again.
Thanks for your prayers and your faithfulness!
Jody and Shane
Tuesday, August 15, 2006 4:13 PM CDT
Hello everyone!
I am working on an update and it is getting very lengthy so I will apologize in advance.
We are doing well, but am asking you to say some extra prayers for Shane tomorrow. He is going in to have a bone marrow biopsy done. His doctor has ordered it mainly for my peace of mind. He has been running fevers since July 2 and no other symptoms. They are very low grade, but still persistent. They have drawn blood cultures and did viral studies that have all come back normal.
They increased his Mercaptopurine a few weeks back but we have now cut that to 50 percent because his counts have been low for 2 appts.
So 'Thank You' in advance as I am sure we will get great results on his marrow.
I told him today that he has to go in the morning just to give mom some assurance and that Dr. Sencer says he is still doing great. All he said was "OK."
He hasn't had a Bone Marrow Biopsy since shortly after he started this nearly 2 years ago. He is concerned that he won't be able to participate in Karate tomorrow because of his hip possibly being sore and there is 2 classes! He never complained of the others when he had them so I don't expect anything different this time.
Check for the lengthy update of the last 2 months coming soon and new pictures.
God Bless! Jody
Monday, July 10, 2006 1:42 PM CDT
SSSSHHHHH! It's a SECRET!
Shane will be presented with his Wish this Friday Night at his belt testing. I would like to invite all that can make it to this big night. It will take place in Cambridge at 5:30. I know it is early and a drive on a Friday night in the summer. There will be cake after the presentation. We hope to see you there! I can hardly wait! I hope Shane will be as excited and surprised as I am right now!
Address: 430 8th Ave. NW, Cambridge, MN 55008. Call or e-mail me for questions.
His instructor has informed his own family to be there and they won't be disappointed. He has told us there won't be a dry eye in the place. He and Make-A-Wish have been great! Thanks a million!
I will update more on our wonderful trip. We had a great time!!
Thanks for checking in! Keep the prayers coming they are definitely working! Jody
Saturday, June 17, 2006 1:03 AM CDT
Hello ~
Thanks for checking in on Shane and I am sorry for the long delay in updating.
I follow other sites and there are too many families that are struggling right now. Please keep them in your prayers. Please pray for Jacob's family(fl/jacob). Jacob fought a great fight and amazed many doctors by his courage and will to live. Jacob took his final journey home to be with Jesus earlier this week and is now healed. Another is Luke (visit/lukewood). The girls went to sib shop with his sisters before Christmas and got to see one another again at the Christmas party. He is preparing to make his final journey. When I told Nicole about Luke she asked me "you won't let Shane die will you?"
Shane went in for his clinic appt. on May 31st and got his monthly Vincristine. When we got there he had a fever of 99.8 so we waited and rechecked him after an hour and he went up to 100. So they decided to give him some IV Rocephin 'just in case'. But they had already deaccessed him so he needed another poke in his port. He usually doesn't mind when he is accessed, but it had been ~2 hours since I put his numbing cream on. So he definitely felt it this time, but sailed through like a champ.
His counts were good. Hgb 13.0,plt 281,000, WBC 3,000 and ANC 2,190. He did continue with the low grade fever for a day but nothing else came of it. His body was able to fight for him.
They finished school on June 7 and he woke up that morning feeling kind of crummy. He had a head ache and didn't eat any breakfast. I sent him back to bed with some Tylenol and he slept another hour and woke up feeling better, so I brought him in for his last day of 2nd grade. He brought in his picture boards to share with his class and staff that I made for his benefits. He felt comfortable enough with his class to share those pictures when he didn't look anything like he does right now. Between the puffiness of those first few months to his beautiful bald head! I am so proud of him!
He got his haired buzzed for the summer and he was thinking about shaving it all off again. He has such thick hair and he sweats so easy.
He is doing great in Karate and will be testing for his green striped belt on July 14 along with Samantha. They both started sparring this week and are very excited about actually being able to make contact with a fellow student or their instructor Mr. Ramacher! Samantha had her first match with her instructor and did great.
Shane has sent in his wish requests and his #1 wish is to remain in Karate until he earns his black belt and to help Mr. Ramacher teach. This will take 5 plus years to achieve his black belt and needs to remain on the A honor roll to be eligible to help teach. His instructor is blown away by his request. Knowing the hard work and dedication it takes to achieve.
This was going to be a short entry but they never are once I start 'talking.' The kids and I are flying to Las Vegas tomorrow to spend time with Pat's brothers and will stay with his sister in California after that. Shortly after Shane was diagnosed and his doctor brought up Make A Wish he wanted to go to Las Vegas and see his cousins for the first time. So he is actually getting 2 wishes granted this year. But this one we will be paying for. They are excited about the flight and I am praying the weather remains calm up in the clouds.
I bought out all of Wal-Marts gum and sucker supply for Amber. I got sugarless gum, but maybe I should have found some sugarless suckers too! When she sees a plane in the air she asks if we will be up there? Tonight I asked her if she was excited about going in a BIG airplane and she said 'NO' I want to go in a little airplane! So I hope this won't be an issue tomorrow!
Have a great week-end! Jody
Thursday, May 4, 2006 9:49 AM CDT
Hi, this is Shane. Yesterday we went to the clinic for counts and an x-ray of my foot.
It's been hurting. My counts are good!(I don't know what they were)
That's it for now mom will add more later. Love Shane!
Saturday, May 06, 2006
Good Morning ~ Check out the pictures!
Shane went in for labs and his IV Vincristine on Wednesday and his counts were a little on the high side, but they are leaving his meds as is thinking that chemo will bring them down. It will be a long 4 weeks!! His hemoglobin was good and ANC 3,009. Overall they look fine, but the ANC is at its highest. That sure is strange thinking it is too high when we have been praying for high ANC counts for 20 months! His bilirubin was normal, but his liver test was elevated again. It has fluctuated during treatment with the highest being in the 90’s and now it is 140 . Dr. Sencer is checking in to ‘milk weed thistle’ which is an herb that has been given to others during maintenance with abnormal AST readings. If anyone has info I would like to hear from you. Thanks.
He has mentioned that his left foot bothers him and last night when he was running he had to stop because of pain in his left hip. They did an x-ray and it looked fine. No leukemia hiding out. He is still in remission and fighting hard!
These last few nights Shane has been so cold. He will just start shaking and will need to get a sweatshirt and blankets. Of course while he is going to get blankets, I am running for the thermometer. We meet at the couch and snuggle while I check his temp which has been normal. He has had these cold spells before. He has taken it easy after school since treatment on Wednesday and usually falling asleep on the couch after supper. Of course when I ask him how is is doing he says ‘good’. I ask him again are you feeling crummy and he will then say ‘yes’. He is such a trooper and hates to complain but he can’t hide anything from Mom.
I have no excuse not to get his page updated because I am home alone!!! Everyone went up north this morning to grandmas with Dad. Shane really wanted to go and of course I wasn’t too sure, but it is only for the night. But I know how fast things can change. Samantha will stay in Erskine with my Mom and the rest will be in Fosston with Grandma Dottie. But that can also change by the time they get there. They will have a great time. And I have work to do!!! I have already had a nap so I should be ready to go. Not!
We went to a Twin’s game against the Angels a few weeks back and they came from behind to win so that was exciting! Shane really wanted to get a game ball so was disappointed when he didn't. Thanks to Make A Wish for the tickets to the game. Grandma Lou Lou was here and we invited the Brteks to go with us so we had lots of fun! Make A Wish is coming to talk to Shane on Monday night so we will let you know when we hear what wish he is granted! What a great group of people. They granted Shane a wish over a year ago, but I was having a difficult time sending in the final papers. I am not sure why other than maybe because he is doing so well and I am afraid that things may change after he gets his wish. I know it may sound weird, but I hate to mess up a good thing!
Amber didn’t take in the Twins game, because she got to see Barney the next night with me and Grandma Lou Lou. She had been talking about her tickets to Barney for weeks with no idea of what it meant. She would see the advertisement of the TV every once and awhile and think that she could turn on the TV when ever she wanted and Barney would be there. It sure was great to see her so excited when he appeared. She was dancing and signing along in her seat the whole time. She was a little embarrassed to get up and dance until the end. It was a great time. She wears her Barney shirt proudly! Thanks for the tickets Grandma!
Nicole had her first communion on April 23rd. She looked so nice. We had a great day for her celebration. We deep fried a turkey and had ham and lots of good food and friends after the service. I have posted a picture. I let her get her nails done for the occasion and she chose a French manicure with a gold cross on her left ring finger. I was in tears during the service because Shane sang in the kids choir and he looked so good up there singing his little heart out. They sang a song in which they ‘Thank God for making me ME!’ It just hit me after all he has been through these last 20 months and he is still thanking God for making him who he is cancer and all!
Samantha and Shane are doing great in Karate. They have each earned their yellow striped belt and are on their way to a gold belt. They both love the sport and have done great these last 4 weeks. They have been going to class every night for 45 minutes and really enjoy it. The last 5 minutes of the class is when they get to play dodge ball. If they get hit they have to do 5 push ups and then can rejoin the game until they are hit again. They are doing a 3 month special promo and are sad that they may not be able to continue because of the cost.
I am needing to get a job and am torn as to what I should be doing. I feel I need to be home for Shane during the day if needed, but then if I work nights I won't be here for the others. If I go back to work in the clinic I don't want to bring home germs to make him sick. Although he is exposed to so much in school already. And then there is daycare for Amber. Lots to think and pray about!
Have a great week-end!
Love, Jody
Wednesday, April 5, 2006 2:02 PM CDT
Good Afternoon ~
Another beautiful day in Minnesota. It should hit 60 and the sun is shining! It is a bit breezy, but the warmth of the sun feels so good!
Shane did great this morning in SSU. Nicole and Samantha came along for support. Or is it to play game cube with Shane. I am not a challenge for him. Everything goes so smooth for him and we are so thankful! His nurse was great and that is so much appreciated. He was asleep for maybe 10 minutes. He woke up as they were taking off his chest pads for monitoring his heart. This happened the last time too. I would like him to sleep a bit longer so he lies still after his spinal, but he has other things to do. He was so hungry and couldn’t wait any longer for breakfast.
His counts were great. Hgb 12.9, Plt 305,000, WBC 3,600, neutrophils 60 % and his ANC 2,196. WoW! They also did a Bilirubin and it was slightly elevated at 1.8. He may need to go back before 4 weeks and have this checked. They will get back to me on their thoughts.
Shane has also noticed that it gets hard to breathe during gym or running and playing at home. It does get better with rest or a bowl of ice cream! Ice cream helps most things! We are to make an appt with his Family Dr to discuss possibly getting him an inhaler for Exercised induced asthma. (Another reason why I don’t exercise!) He would use this before gym class and other times when he may need it. I will continue to pray that is all it is and his lungs haven’t been damaged by any of his Chemo.
He did stay home from school on Monday since he woke up with stomach pain and complaining of nausea. He did throw up 4-5 times and was all better by lunch time. He never did have a fever. It has been 2 weeks since his last episode so we will watch and see. The doctor isn’t sure if it means anything at all so we will watch.
It is so hard to believe it be a year since Baby Alex earned his wings. Please say an extra prayer for his family during this very difficult time. They are a beautiful family.
Thanks for checking in and make it a great day!
Love, Jody and Shane
Friday, March 31, 2006 0:30 AM CST
Good evening! Thanks for checking in!
Sorry to keep everyone waiting. We have just been busy living life! One girl signs off her website saying “Live life like you mean it!” That is so true!
I have had this typed for 2-3 weeks, but that is as far as it has gotten.
Shane is doing great! He had his appt on March 8th and his counts were good. Hgb 12.2, plt 363,000, WBC 1,900, ANC 1,406. He will continue on his same meds and recheck on April 5th with a visit to SSU for his Chemo into his spine and IV Vincristine. The 4 weeks between visits seem to go slow, but it seems like we were just at SSU! And these visits are every 3 months. Shane thinks both of his sisters should be there this time. Amber could even come with if I had enough suckers and gum to last for 3 hours! At his last appt. she didn’t want to go to the Sibling play area, but we will have to convince her it is a lot more fun there then on 4th floor.
We have had a busy month with the girls in swimming finals. We went to Hopkins for C-finals for Nicole and Samantha, and they both did great! Nicole aged up in November with her Birth Day so her times are faster, but she qualified to compete in 8 events. She missed a B-time by 1 second. Samantha also qualified in 8 events and did great. She wasn’t feeling her best on Sunday and that is when she had a few easy events which she could have gotten B-times in if she was feeling better. There was so much going around, but I was hoping it was just butterflies! I was wrong! We stopped to eat on the way home. I felt like the worse mother in the world. All she did was lay her head on the table and sleep. Amber felt bad for her and kept rubbing her head and giving her kisses. When we were walking out the door she made a fast dash to the bathroom and tossed her cookies. Poor girl! She only got sick the one time, but felt pretty crummy on Monday and stayed in bed. She did get 2 B times in Hopkins which earned her a trip to B-finals in Alexandria the next week-end!
So on to Alex the following week-end. We went for 2 events on Saturday am. We just drove up for the morning and we got there for warm-ups at 7:20. My brother and Star met us there to pick up Grandma Lou Lou to bring her home after a few weeks here with us. Samantha once again got some good times even after forgetting to put her goggles on for the first event!
Monday night we got a call and Samantha was invited to participate in a relay team at State the following week-end. Of course she said YES and then I realized they were in Rochester! It was great experience and I am glad we went. She was in 2 events. On Saturday she swam in the 200 Free style which she swam 50 yds. And on Sunday they were in the 200 Medley and she swam a 50 Free.
Shane and Amber ended up with the stomach flu also, but it didn’t last long for them either. Of course Shane’s was on Monday morning before school. And he was vomitting again last week. He was complaining his stomach hurt and went to bed without supper. He woke up a few hours later sick. We have had our share of the stomach bug this year. It seems like someone is always sick.
Nicole slipped getting out of the truck and twisted her ankle. Of course it happened at night so we went in to the clinic the next morning for an x-ray. Luckily it wasn't broke, but she hobbled around here for nearly 2 weeks.
We sure are enjoying the nice weather after our 2 snowstorms a few weeks ago. I will TRY and get back on here after his appt next week.
Have a great week-end!
Jody
Friday, February 24, 2006 1:32 PM CST
Hello~
Thanks for checking in! It sure is nice to see the sunshine!
Things are going well. Shane still complains his ear hurts on occasion and I did have it looked at last Friday. It had some fluid in it that may be causing his pain otherwise no infection.
Amber had another round of the stomach flu last Thursday. I was on my way home after Jessica's service and called to check on her and Laura informed me of loose stools and by time she got up to the bathroom again she had vomitted. Sorry Laura!
Jessica's service was as beautiful as she is! We will miss her smiles and her warm greetings! Pray for comfort for her family and friends!
Some friends of ours had a scare at their daycare. One of the daycare kids is in Children's with bacterial meningitis. It has been 2 weeks since they were together at daycare, but it is still scarey. We were at ours friends house last Friday night for supper. But they are still healthy. On Tuesday Shane had a headache and a 99.0 temp. On Wednesday am he was complaining that the base of his head hurt too. I didn't hear of the meningitis until Wednesday afternoon. So of course we will continue to watch him like we always have.
I will need to have a lump removed from my inside lower lip. I bit it on Shane's B-Day and again a short time after and now I have a hard lump the size of a pea. It has a blister looking dome top. It is not painful at all but is very irritating and my tongue can't leave it alone. It will be done with local in the office. He will send it out for pathology, but he feels it is benign. Without even looking at it he felt it was a ?. Of course I can't remember the name right now. More or less it is a pocket of spit!
That is all for now!
God Bless! Jody
Wednesday, February 8, 2006 2:42 PM CST
UPDATE ~ Sunday Feb. 12
Please pray for Chad, Holly and Connor Figg.
Beautiful Baby Jessica earned her wings this morning at 10:40.
Hello ~
Thanks for checking in ~
Amber was sick last week with the 104 temps, body aches, coughing, chest congestion with rapid respirations greater then 60 and wouldn’t move on her own. I had to carry her from place to place which wasn’t too hard because she wasn’t up for playing anyways. She took 3-4 naps a day and just looked rough. Finally by Tuesday afternoon she finally started coming around and bounced back quickly. I don’t think she has stopped moving since. She has been using the potty for 3 weeks now and is doing great. I thought we may have a set back with her being sick and only going to the bathroom 2 times a day. But she is doing great. Now she is using the diapers for her baby Jenna. She needs to use a new one with each diaper change. So we may not have a problem getting them all used up.
We have been watching Shane's temps closely since the end of last week, when he started with low grade fevers never going over 99.2. But we know how fast they can change. He did well over the week-end which I was very pleased since I was out of town. I went on my week-end scrapbooking retreat. And let me tell you it sure was needed, just ask the kids! Last Friday morning was one of those breakdown days for Mom. It has been awhile. Maybe too long. I just wish they didn’t have to happen with the kids around. Thanks to those that listened to me and Tiffany for taking Amber so I could continue with my tears without Amber staring at me.
Shane still had the cough on Sunday (which did sound worse) and started with low temps again. Sunday night he woke up complaining of his throat hurting. It seemed to me that is was related to his cough more then strep related. He was exposed to strep on Saturday, but only for a very limited time. He had an enjoyable day at Underwater World with his Great Uncle Vic and Sara and Olivia. Judy and Vic like to do special things with our kids and they look forward to their time together. Thank You!! The kids didn’t have school on Monday and Shane’s temp went up to 100.1 and would fluctuate. I had called on-call Sunday night and he wanted him seen on Monday to have his chest listened to and a quick strep. We got to take him to our clinic and he checked out fine. I kept him home on Tuesday because of the cough and I wanted to keep a close eye on his temps which still have not returned. Yeah!!!
Shane's counts today looked good. Hgb was 12.5, platelets 287,000, WBC 2,200, ANC 1078. Shane did have a chest x-ray today because his doctor heard some crackles in his chest and wanted to make sure we aren’t dealing with pneumonia. She thought they looked fine so we will continue to monitor his temps and cough. He may need to get an inhaler or do some nebs if he doesn’t clear up. He will also need to take his Glycolax twice a day to get him on a regular BM schedule. We have been having some issues again and we want to get on top of it this time.
Amber went with to the appt today and I brought her to Sibling Care for the first time and she did well. Amy, the Caregiver said she looked like she wanted to have fun but didn’t quite dare. She did have some teary eyes on occasion and she would run to Amy when she needed some reassurance. She was so excited to see us. I asked her if she wanted to play there again another day and she said ‘yes’.
Even though Shane’s treatment is going great, it is very hard to hear that some of our friends are struggling and waiting for answers. Please pray for Shane Y who is undergoing testing to discover what is causing his seizures, Jessica who is in PICU and is currently stable in an unstable condition as written on her web page. Kendra who is struggling with fevers again with no ANC and arm pain. Please check out their web sites for more updates. Continue to keep all our cancer friends in your prayers. Thank You!!!
God Bless!!
Jody
Monday, January 16, 2006 4:53 PM CST
Hello ~
Thanks for stopping in and checking on Shane and our family. We appreciate all of your thoughts and prayers and everything you do and have done for us.
Shane’s appt at SSU last Wednesday went well. His counts were all good. Hgb 12.7, platelets 307,000, WBC 2600, neutrophils 68% and ANC 1794. His daily oral Chemo was increased to a new higher dose because he started a new 3 month cycle and his weight has increased to the next dosing level. Weight is 36.4 kilograms or 80 pounds! WoW! If I remember right when he started he was about 61 lbs and dropped down to 58 lbs 1 month into treatment! OK, so I couldn’t remember. I confess. I had to go look it up!!
Last Thursday night we went and cut Shane’s curls off! It was a hard decision, but he is now glad to have them gone. Hopefully they will still be there when he grows it out again ! I kept a curl for his album. Hmmm... I wonder where it is?
Shane had his 8th B-Day party with school friends last Saturday. He had a sledding/snowmobile party here. They all had a blast. Luckily the snow stuck around for them to enjoy themselves and we had no injuries!! He got lots of cool things to play with. I will try to post new pics, I know I have said that before, but don’t give up on me!
Shane goes back in to clinic in 4 weeks for IV Vincristine and in the mean time he will continue his oral Chemo at home.
God Bless! Jody
Thursday, January 5, 2006 3:59 PM CST
Happy New Year! I hope you had a great Holiday season! It sure is hard to believe it is over already! The kids had a lot of fun. We spent the week-end in a Hotel up north, because we had 3 free nights we had to use up before February. Samantha and Amber had won these last year from the Fosston-Lengby Knightriders when they had a poker run fundraiser for us. They even included $30.00 vouchers for meals. Thanks again!
My Mom was planning on staying with us, but ended up in the hospital Saturday noon and didn’t get released until Tuesday night. She had been doctoring for a hemoglobin of 8 and extremely high platelets the week before Christmas. They were not sure why her blood should be so low and platelets so high, so she was referred to an Oncologist in Fargo. She had a bone marrow biopsy done and some more blood work. We are so glad that Shane has been put to sleep during his, although Grandma wasn’t so lucky! Ouch! She was also started on a pill for her gout which was also causing her problems at the time. Well little did they know that it was probably this little pill that caused her to go to ER with extreme pain in her shoulder. She was not able to move her right arm with out pain. This pill can enhance the pain when taken during a flare up. Her blood pressure was also very low which can be related to a decrease in Hemoglobin. So we sat until Tuesday waiting for the bone marrow results which were normal. She had an UGI and Colonoscopy on Tuesday which showed no active bleeding. She was released Tuesday night with no answers to why her hemoglobin is low. Her platelets slowly came down to near normal though.
She continues to be weak and having some pain. Her hemoglobin was 8.3 on Thursday and will recheck it this week. She was going to have a 2nd opinion down here, but my friend had talked with the Doctor and he felt the only thing more he would add would be to send her to a Rheumatologist. She has been having trouble with her feet and hips for years and this could hopefully explain her blood counts.
So back to Christmas! Samantha did end up with the stomach flu Friday night (the 23rd) and was over it before we left Saturday morning. We did spend our time in the Hotel and did have a great time together. We were so glad that Santa found us!
Pat and Amber rode home with Joe on Monday for work on Tuesday. Amber will go to Tiffany’s during the day while Pat works. Thank You! I stayed with Nicole, Samantha and Shane and waited to see what Grandma would find out. Carol and her girls stayed with us which the kids loved! Carol watched the kids for me while I went to be with my mom. They were going to ride home with us, but she decided to leave on Tuesday when she had a ride and took my girls with her. Thank You! So Shane and I spent the day in the Hospital and he learned that all Hospitals aren’t fun and games like he is used to at Childrens! We are so Thankful for the knowledge that our Doctors and nurses have and know how spoiled we are when we are in the hospital with a question and they are right there to give us an answer.
We came home on Wednesday night to find out that Amber had been throwing up all day at Tiffany’s. She never did again after we got home, but she would just lie around. Poor little girl. She did perk up later and had a bath and was back to new again. We were so tired we were almost wishing she would have laid low until morning for us. So Shane was the only one left and he did start throwing up Thursday afternoon. His didn’t last but a few hours and a nap so I didn’t have to worry long. Every time someone would cough or clear their throat Amber would run and get the bucket and bring it to them. It was so cute. She is a nurse in training.
We went out to eat on New Year’s Eve and we all stayed up to see the New Year come in. I still remember when I was young and seeing ‘the ball drop’ was so much fun. It was great to see Dick Clark back this year.
The kids have enjoyed playing in the snow and riding snowmobile. And they are anxiously waiting to go fishing. But Mom will never think the ice is thick enough!!
Nicole will be spending the night at the Minnesota Zoo on Friday night with the dolphins! How cool! I am sure they won’t be getting much sleep and she will need her time when she gets home.
We are getting ready to celebrate Shane’s 8th Birthday on Monday and he is having some friends over to go sledding the following week-end. So we better get planning!
The kids are back in school and were ready even though they would never admit it. It was very hard to get up this morning! And I am not a morning person!
Pat came home early from work today with chills, more stomach pain and nausea. We are not ready for round 2.
Have a great week and we will check in next Wednesday after Shane goes for his spinal chemo unless there are changes before that.
God Bless,
Love, the Killian’s
Thursday, December 22, 2005 12:08 AM CST
Merry Christmas!!!
Last week was a little crazy and no time to update. With all the last minute running and having the stomach flu bug in the house! Of course I had to be the lucky one to get it last Wednesday when Shane had his Chemo appt. So Pat came home from work and took Shane in for the first time. He did have some help though, because his Mom was here and able to go with them. They did a great job! His counts were down a little which always make me think....? Hemoglobin was 12.4, platelets 252,000, WBC 2,600, neutrophils 37% and ANC 988. He was able to continue same meds but to recheck in one week. His ANC needs to be above 750 or they have to decrease his Chemo dose. I was thinking he may get the ‘bug’ too, but he never did!!! Knock on wodd!
He was having the chills on and off last week-end, but his temps ranged from 96.9 – 98.1. He just did not feel good. Just laid around and moaned and groaned. Which some of that could have been the steroid too. He would go lie down when he needed to and he just felt crummy. I did put a call in to the Dr. for some reassurance.
He had an ice skating B-Day party to go to on Saturday and he did well, but only stayed for about an hour. He skipped the cake and ice cream so I knew he was feeling down. It is still so hard to see him like this.
Amber started with a croupy cough and scared me half to death on Sunday night. She was having a hard time catching her breath. She inhaled/gasped 5 times before she was able to exhale. I ran out to the garage with her to get her some cool air and all along Pat thought I was losing my head! Her breathing sounded so bad I nearly took her to ER, but Pat thought she could wait till morning. So it was a long night! She had a fairly good night’s rest. But I didn’t sleep with the all the noise coming from her chest and rapid breathing. We took her in Monday morning but of course by time we got there she was sounding better. But she had rested on the ride there and wasn’t running around. We did get some steroids for her too to if needed. Of course we were not home but 5 minutes and she started up again! Never fails! She is coughing a bit more but breathing so much better. This means she is back to her same energy level as before which is constantly on the go!
Shane had counts done yesterday at our primary clinic. This saves a lot of drive time and gas! Hemoglobin 12.4, platelets 328,000, WBC 4,700 and ANC 3,300. I feel so much better when his ANC is higher when he is in school with so many illnesses going around. He still isn’t feeling the greatest but does know his limitations. Yesterday he came to me and said he knew why he wasn’t sleeping well. He said the presents under the tree were causing him to lose sleep!!! I asked if I should get rid of them and he just grinned at me with his twinkling eyes!
We are Remembering the Reason for the Season! And will be celebrating the Birth of Jesus. Please keep Jessica Figg in your prayers. We have met them on this journey and Jessica also has ALL. They found out on Tuesday that she has relapsed and her cancer is back. They will be starting intense treatment again to get her in remission and then to the U of M for bone marrow transplant. She is a beautiful little girl with a lot of fight in her and we love that!! Please pray for her and her family and send words of encouragement. Her website is www.caringbridge.org/mn/jessicafigg
Thank you for everything and I hope you have a Happy New Year!
God Bless! The Killians
Wednesday, November 30, 2005 12:06 AM CST
Greetings!
We hope everyone had a good Thanksgiving!
Ours was a day longer then planned due to the freezing rain up north. They were suppose to get all this snow , but on Sunday it started pouring rain after noon and never let up. We did pack everything up and our friend Joe came by and told us there were trucks in the ditch and it would be safest to wait a day. So we unpacked everything and spent another night. We left around noon on Monday and the roads were still covered with ice and some snow. We continued to drive in freezing rain and rain for the first 2 hours and then the roads started to improve. I am glad I wasn't driving. Shortly after we got home and started unloading it started to rain here too. So Pat got to drive in it again on Tuesday morning.
Shane is still doing well, but having more episodes of nausea and some vomitting. He has come home early from school a few more times and yesterday he wasn't sure he was ready for school after having five days off. I am thinking he had so much Mommy time that it was hard to think of school again! He went to his Bible study class after school yesterday and when I picked him up he was sitting out in the hall with one of the leaders. I asked how he was doing and of course he says 'good', but I could tell he wasn't looking too energetic so I figured he was just achey or his stomach was bothering him. When he went to get his things his leader said that he had thrown up in the bathroom 5-10 minutes before I got there. He usually does feel better after he gets sick so when he got home he had some yogurt and went out to play in the snow! They had fun sliding down the neighbors hill. Of course there are some trees at the bottom and if the hill is slick enough they can come close.
I hope his platelets are good because this morning he told me he went down the whole hill on a snow board! He was sure proud of himself! It is a pretty good size hill so they can get some good speed coming down!
We are suppose to get a little more snow and it is nice to see the ground all white. It will hopefully give my Christmas spirit a boost!
God Bless! Love, The Killian's
Thursday, November 17, 2005 6:20 PM CST
Good Evening!
The kids are off to see Harry Potter for an early showing with a neighbor friend and they are very excited!
Shane went in for IV chemo yesterday and his counts were still doing good. Hemoglobin 11.6, platelets 287,000, WBC 3,400, neutrophils 51 percent and his ANC was 1,768! So with such good results he was bumped up to full dose and then some! Since his weight has increased since they last figured his dosing 3 months ago he will increase his Methotrexate to 9 pills every week. It is a good thing the pills are small. He has been feeling great and his curls are sure coming in. I will try to get some new pics on soon. He was able to see his primary Dr. Sencer on Wednesday and she said not to be surprised if they go away the longer his hair gets. So I will run my fingers thru his locks as much as I can!
He did come home from school early on Tuesday complaining his stomach hurt. He has mentioned this more often again since starting his chemo so I am thinking it may be related. Although there is a lot of stomach flu going around so you never know. Samantha stayed home from school on Wednesday complaining her stomach was hurting too.
We went roller skating for Nicole's B-Day last week-end. I sat there for one hour and watched them go round and round. Finally I couldn't stand it anymore and had to go get some on! It was a lot of fun but I paid for it for 2 days! No broken bones for anyone so that was a bonus! Of course the kids bring their roller blades to use, but Shane wanted to try skates and he did very well. He thought he liked them better. So we will see next time. I hope we get out more this winter because it sure is good exercise!
I went to the Science Museum with Samantha today and had a lot of fun. We saw a 3-D movie on Mars which was good and another one in their Omni theatre. Pat was home today due to the cold so he spent his time with Amber.
Amber has been fighting something for the last 1 1/2 weeks. She came back from up north with a croupy cough that didn't progress or last more then 2 days. Then on Friday night she started with temps up to 103.5. Those lasted a few days along with a mostly clear runny nose. Then she broke out with a rash on her stomach this Tuesday which I am thinking it is related to her fevers. Hardly a cough left except for an occasional coughing fit. So I hope she hasn't shared this with Shane. His counts are good so hopefully he is able to fight this one off also!
For those that may be wondering...I did get all the wallpaper stripped and the room painted!!! I was sore then for a few days also! I must be really out of shape! There is an area that needs patching behind the door. There seems to be little handprints and fingers prints that smeared and scraped the paint off while it was drying. Oh well, good thing it is behind the door!
The girls have a swim meet this Saturday and Shane has another B-Day party to attend.
Shane doesn't have another appt for 4 weeks! WOW! I hope we can make it that long without any ER trips. We will do our best. We are very Thankful for everyday we are given!
Thanks for all your love and support! God Bless!
Jody
Wednesday, November 2, 2005 1:17 PM CST
Greetings!
Shane had his appt this morning and counts are still improving! He is now take 75 percent of his normal chemo dose. He is getting closer to full strength and we will recheck in 2 weeks. Hemoglobin was 12.2, Platelets 256,000 WBC 3,700, Neutrophils 48 percent and ANC 1813!! He gained another 2 lbs in 2 weeks! He has nearly ate us out of house and home so I shouldn't be so surprised! I can still see his tummy is bigger or distended. I mention this every time we go in, but it must not be anything to worry about! So we won't!
Shane is doing great and had fun Trick or Treating on Monday! We have lots of candy and will be opening our very own candy store! Everything is free! Amber caught on very quickly at the houses where you could pick your own. She only took one huge....handful! I brought her home a little early because her pumpkin was full and she just wanted to eat her goodies. WW III nearly broke out here with her Dad when I left though! It was an enjoyable night.
Shane's hair is coming in with a little curl this time. Mainly in the back so far, but it is so cute! He really likes this length and would like to keep it this way. It is still the soft baby hair and I love it!
Amber celebrated her 2nd birthday at Chuck E Cheese on Saturday! She is talking so much and knows exactly what she wants! And doesn't stop until she gets her way! On occasion when she is up to her tricks I say to her "Amber, you are too much!" So when I ask her how old she is she will sometimes reply "too much!" Laughter is the best medicine and she frequently reminds us of that.
Nicole and Samantha attended a Siblings Class last Saturday and had a great time. I dropped them off at 9:30 and picked them up at 2 pm. School is going well and Nicole starts her Babysitting readiness class on Tuesday. It still feels like yesterday when I took my class in the Erskine multipurpose room.
Pat went hunting at Camp Ripley during MEA and got a nice Buck with his bow and arrow! It had 9 points and weighed over 200 lbs! Very exciting! He will go rifle hunting this week-end up north. His brothers Mike and Dan will be home also. He will be taking the girls with him to grandmas. So Shane and I will have the week-end to our selves, although it is nearly booked already! Shane has a birthday party to attend on Sunday afternoon. Taking in a movie and playing with friends are a few things on his list. I plan on finishing stripping the wallpaper in the kids room and painting. But I always have high hopes of finishing projects and don't quite make it. I have been trying to get a few things done this week so we can just have fun this week-end , but I have seemed to make a bigger mess!
We are praying for safe travel for Pat and the girls. Pray for safe hunting and travel for all. Praying for our caringbridge friends who went to heaven this past week-end and those who continue their courageous battle! Praying for comfort and strength for their families. Many are talking and playing with the angels before they go and are making angel friends to show them the way. It is so amazing to read about their experiences they are having and I pray it brings some comfort for the families.
God Bless and Thanks for Everything!
Jody
Wednesday, October 19, 2005 2:03 PM CDT
Shane's appt this am at SSU went very well. His counts have come down some which is to be expected since he re-started his oral chemo last week. They put chemo in his spine and IV. His hgb was 12.2, plt 302,000 WBC 3,700 neutrophils 36% which makes his ANC 1406. He will keep his meds at 50% and recheck in 2 weeks. I pray that his counts will stabilize for the next 2 weeks and they can increase his chemo at the next appt. Also for him to remain fever free to avoid a trip to the ER which could turn in to an admission.
We stopped in to check out the Sibling play area before we left today and found out that I can bring Amber there when I go to Shane's appointments in the clinic. That will be so helpful so she doesn't have to sit in those rooms with us and I don't have to find someone to watch her. I thought the area was for hosp patients only. Shane can even be in there while we wait for his labs. Amber has to be 2 to get in and she will have her BDay before his next appt. Yeah for Amber. She will love it there and I will probably have to drag her out of there kicking and screaming!!
He got his flu shot today, which of course he received when he was still sedated! Nicole requested to be put under to get hers too! But it didn't happen. I will take her and Samantha kicking and screaming to get theirs soon!
Have a great rest of the week and Thanks for checking! I will update in 2 weeks unless things change before that.
God Bless! Jody
Sunday, October 16, 2005 9:11 PM CDT
Hello!
Shane's appt on Friday went well and his ANC is 3,190!!!! Can you believe it? I can't! (typed Shane) His Hgb was 11.7, plt 261,000, WBC 5,800. He will start on 50% of his normal chemo and they usually keep them at a dose for 2 weeks before changing it. They will check counts on Wed. when we go to short stay for his spinal chemo, IV Vincristine and his flu shot (which he opts to get when he is sleeping). The girls don't think it is fair that he his sleeping when he gets his!
I don't like to see his white count that high. When he was first admitted his WBC was 5,200. But that also showed 12% Blasts which are the leukemia cells. He did not have any Blasts on Friday and hasn't since 9-3-04. So we will continue to pray that none of the bad cells have started to grow again with this month off of treatment.
On Friday when we were in the parking lot at Children's looking for a place to park Amber vomitted all over herself. I had nothing to clean her with other than her blanket which she already had plastered. Shane continued to hand me wipes until I had her halfway cleaned up and we went inside. I hated to take her into the building let alone up to the Clinic. We got right in a room and was hoping this would get us out quicker, but it didn't work. We got some towels and wash cloths to clean her up and they gave her a pair of hosp pj's to wear. It was a one time episode so I was glad about that.
I took Shane and the girls on a horseback trail ride this afternoon. It sure was a lot of fun! Shane wore a riding helmet and was the closest one to falling off! Of course! His horse got a little spooked and jumped to the side and he was slipping off the side, but hung on for dear life and was able to pull himself back on the saddle. The first half of the ride he was riding right in front of me and half way through we let the horses eat some grass and I got ahead of him when we started again. So I am sure I would have screamed and scared the horse even more if I would have seen it! When I had turned around to look how he was doing all I saw was the leader trying to get his horse going again and had no idea what had happened until we got back and his sisters started talking.
I remember riding all the time at my grandparents and loving it. They all have wanted to take riding lessons for many years, but like everything else it isn't cheap. There are a lot of stables around here so maybe when they get older they can go help out at one. Nicole will get her babysitting license this winter and plans on saving all her money for horse camp next year.
So we are getting into our nightly routine of bedtime medicine. It is amazing how quickly we get out of practice. Amber is even slipping! I better go do that before I forget! Have a great week and Thanks for checking. I will update after his appt Wednesday.
God Bless! Jody
Friday, October 7, 2005 3:46 PM CDT
Shane had his appt this morning and his counts still are not where they should be so Chemo is on hold still another week. Hemoglobin 11.9, platelets 291,000 WBC 2,700 neutrophils 5% and his ANC was only 135. It has gone up since Monday, but they were hoping it would double daily til Friday.
So we remain on a holding pattern until we recheck next Friday. He is still quite susceptible to infection so we will remain cautious. I pray he doesn't start with more fevers over the week-end and he can enjoy his classmates B-Day party on Sunday.
Have a great week-end! Jody and Shane
Tuesday, October 4, 2005 5:10 PM CDT
Shane was released from the hospital yesterday noon. They were going to make him stay one more night, but after talking she decided to let us go. But if he starts running fevers again we have to go back in to be seen.
His counts on Monday weren't that much better then Sunday, but they were going in the right direction. Hgb 11.6, platelets 256,000, WBC 1,600, neutrophils 4% and ANC 64. We are hoping his ANC will continue to double and we will check it on Friday. He still had a low grade temp last night and today it hasn't gone above 99.3. I did keep him home from school today and he wants to go tomorrow, but I think he should stay home one more day for his counts to improve. His immunity level is low and this really needs to build up so he can get started on his Chemo again. I don't want him to be off for long and give those 'bad' cells a chance to start growing!
They have stopped his Bactrim to see if that may be the reason his counts aren't recovering as fast. So he may start back on that one or they may change it all together.
He still has a little drippy nose so as long as his temp is above normal I will keep him home. He loves school and sure misses his new friends! He has a birthday party to attend on Sunday and he would be very sad if he had to miss it.
Thanks for checking! Love, Shane and Jody
Sunday, October 2, 2005 11:23 AM CDT
Good Morning!
Shane went in for counts on Wednesday and they were still low so his Chemo is still on hold. His hemoglobin and platelets were good, but his WBC was still low at 1,400 and his ANC dropped to 146. So they just wanted him to recheck counts on Tuesday. He had a great week at school and swimming.
Grandma Lou Lou came down on Thursday to visit and is going back today.
Yesterday Shane started running low grade fevers which he hasn't had for quite awhile. They stayed around 100.0 for most of the day and then last night while Samantha and I were at her girl scout hayride they went up to 101.1. They didn't go any higher until 2:30 it was 101.8 and at 4 am it went up to 103. So I called in and they wanted to see him since last week his counts were so low already. So we got our things together and headed to Children's so they could check his labs and give him some IV Rocephin.
Once again his ANC dropped to 34 which earned him a trip upstairs to 8th floor to be admitted. So we are here until his fevers are down or his ANC goes up! His WBC was 1,900 so we were hopeful his counts were recovering. He is feeling good for the most part but he did start with some sniffles yesterday. We probably were pushing our luck some last week when his counts were low we were out and about and he went to school so he was exposed to a lot of germs.
He has already ordered his favorites off the menu for breakfast. He gets tri-tators, mac and cheese and of course ketchup! He usually eats this 3 times a day. He just called me and has placed his order for lunch which won't surprise anyone. McDonalds! I better tighten up my laces and get walking! There is a tunnel that connects, but it is long and hot!
I will let you know more tomorrow after he has counts done and then we should know what the plan is for tomorrow.
God Bless! Jody and Shane
Wednesday, September 21, 2005 1:26 PM CDT
Good afternoon!
We just got back from Shane's appt and he did receive his IV Vincristine in clinic today, but his counts came back too low so his oral chemos are on hold. He can still take his steroid though, so everyone look out!!
We will go back in next Wednesday for counts only and then they will decide what dosage to start him on. His hemoglobin 11.2, platelets 221,000, WBC 1,200, neutrophils 20% which makes his ANC only 240. I know 240 is a number many cancer patients would love to reach, but last month his ANC was 1,584. So we have been very blessed to have his ANC be good for a very long time.
His shingles are completely gone, but now he may have an area of ringworm the size of a quarter near his right eyebrow. It hasn't made the circle complete yet so maybe if we start treating it early it will go away faster. We can only hope!
They are doing great in swimming and Shane has been bumped up to the bronze level. He will now practice 1 1/2 hours each practice. Last night he did have to take a little break and then got back in and finished. Before he would swim the length of the pool and wait for everyone, so he could rest then. Now he will do 2-4 lengths before getting a rest sometimes. I wouldn't make it!
I have to tell you about our little Amber Lynn. She knows that at her bedtime it is time for Shane to get his medicine. So if she is in her crib she will stand up and yell "brother medicine" over and over again. If she is in her bed and hears me in the kitchen she will call " mama Shaner's medicine?" If she is not in bed yet Shane better look out because she races up the stairs and shakes him with all she's worth "brother medicine!!" He is usually sleeping so I have to wake him because it has to be given on an empty stomach. She keeps us laughing for the most part!
Have a great week and I will update next week! Jody
Thursday, September 15, 2005 2:04 PM CDT
Hello ~
It is hard to believe the week is almost over! Where does the time go?
We are all doing well here and Shane had a blast at 'HIS' party last Saturday! We had beautiful weather. It was a little warm and humid, but we had a nice breeze to cool us down. We had lots of food and fun for friends and family. There were nearly 70 people here that day. It sure was great for everyone to come to celebrate this very important milestone with us! One year of being cancer free is great and we can't wait for years 2, 5 and many more to come! We rented a big Moon Walk for the week-end so the kids had a blast! They sure had some red cheeks for all the jumping they were doing. We had some surprise guests at the party! Shane's uncle Mike, Janel and Kincaid came in from Colorado. It sure was nice to see them again and watch Amber and Kincaid play together. She was so excited to have a 'baby' in her house. Even though he is 1 month older!
Thank you to everyone for Shane's unexpected gifts. He is one special boy to many!
I forgot to tell you that last week I got a call from the Bone Marrow donation center and I am a early match for someone with Leukemia. I have been a registered bone marrow donor since Shane was only 1. I always hoped they would call me someday so I could help someone. When she told me why she was calling I nearly lost it! She asked me if I was OK and then I told her our story. She said it may be months before I hear anything more from them and that it was early in the testing and I may not be a good match after they do further testing. Right now she said my chances of being the best match is 1 out of 20.
Shane and his sisters started on the STMA Swim team again this week. And it sure is great to see Shane have his strength again. Swimming should help keep him moving and to help prevent any muscle weakness or tightness. He swims for 1 hour, Samantha swims for 1 1/2 hours and Nicole swims for 2 hours. Nicole said she was exhausted! I can't imagine!
Well that is it for now, Shane goes in to the Clinic next Wednesday for Chemo and counts so we will update then.
Have a great week-end!! The Killian's
Thursday, September 8, 2005 2:31 PM CDT
Hello~
Shane has been doing well and went to 2 Twins games last week-end. We all had a great time and now he plans to play for the Twins someday!! Go Shane!
We are busy getting things done for Shane's '1 year cancer free' party this Saturday afternoon. We are thankful that his treatment has gone so well and are glad we have made it this far. We will deep frying some turkeys and other goodies being brought by friends. It sounds like a beautiful day to spend with family and friends.
If you are in the area please feel free to stop in and say HI and we would love to see you. E-mail me at the address below for directions.
Hope to see you Saturday (last minute party of course)
Jody and Shane
Thursday, September 1, 2005 8:58 AM CDT
Updated at 11 pm - Shane came home from school today at ~ 1:30. He went to the nurse because he was still having body aches all over and his eyes were burning. Which usually means he is running a fever but the nurse checked it and it was 98.6. I brought him home and he ate lunch and took a nap. It is so hard to know how much he is hurting sometimes because he rarely complains. He will just get quiet and sneak off to find something to do in his bed. I don't want him at school if he is in pain. Last year thankfully was very easy for him, but this year he may fall behind if he misses too many days. His bean bag was delivered today so it will be in his classroom. I hope he will feel comfortable with his new class soon and will use it when he needs to.
I think I will call his nurse tomorrow because it seems like his abdomen is distended. We haven't had any constipation problems recently. It does seem to bother him when I push on it. I have noticed it the last few days now. He finished his 5 day burst of steroid Monday of this week, but I haven't noticed it before. I hope it is just my imagination or is nothing to be concerned about.
********************************************************************************************
Everyone got off to school this morning. They were ready in record time and were all wondering 'why did we have to get up so early?' I wonder what we forgot since it all went so smoothe! Everyone was excited and nervous as they will all be starting a new school that was just built. Nicole went over the floor plan numerous times to find her way to her classroom.
Shane is having more body aches again so didn't sleep that well last night. I did give him some Tylenol with hopes it would make him sleepy so he would be rested for today. It hurts to even touch him lightly, so very gentle hugs and kisses. He did have another dose of tylenol this morning too. He feels good about starting school today, but is a little worried if they are having PE today. He knows to do what he can, but doesn't like having to sit out when everyone else is participating. He did remind me that at the end of last year that he finished the mile and many of his classmates didn't. Way to go Shane!! I know I wouldn't finish it myself!!
We did pick up his new glasses on Tuesday and he looks so smart! I will try and get a picture of him with them on and post it. Thanks to his wonderful friends who made some goodies and sold at their garage sale a few months ago. Your money covered the cost of his glasses. Thank You!!
Shane had a wonderful time yesterday bowling with some friends for his birthday party. I finally did it. It was so different being with 4 boys, they were all so quiet! Last night before bed Shane came up to me and said "Mom I feel funny about bringing this up, but why didn't you buy me a birthday present?" Of course I didn't have answer other than 'didn't I buy you something in January?' Of course I can't remember yesterday, so we went to look at pictures and so far I can't find one that has a gift from us! I did finally remember that I bought him a little pillow, but nothing else is coming to mind. I surely won't be getting 'Mother of the Year' at this rate!! He also asked me if we can go to church as a family this Sunday? He is such a great kid! He didn't go a few Sundays because of his shingles and the time he did his sisters weren't there.
Well I better get going because Amber just came down with her 3rd piece of Bubble Yum!
I need to find out where her 'stash' is!!
Take Care and God Bless!
Jody
Sunday, August 28, 2005 9:34 PM CDT
Good Evening All!
I hope everyone had a great week-end! We did! Ours started on Friday when Pat got rained out so we all went to the State Fair. I thought it may be a better day to go then wait for the week-end when everyone else would be there! Last time we were there Shane may have been 2 yrs old and his sisters both ended up with 103 temps and spent most of their time in the stroller. This time it was much more exciting for all! Shane did spend a lot of time in the stroller himself. I think the Chemo is catching up with him again and so are the steroids! He had flushed cheeks all day, but no fever. We did have a little scare though when Amber disappeared! Dad thought she was still sitting on the curb by the girls petting the sheep, but she had left them and walked behind him. When I got back she was gone! We maybe looked for her for a few minutes, but it sure felt like hours! Where does a person start looking in all those people? Luckily she found some more sheep around the corner and Dad found her there.
Saturday we went to watch Grass Drags. We only stayed for a few hours which was long enough for my feet. They were very tired! So the kids and I came home early so Amber and I could take a nap!
Now the real count down to school. The kids are very excited to meet their teachers on Tuesday night and the first day on Thursday. Shane is even having a few friends over for his very belated B-Day party this week. He wants to either go bowling, swimming or mini-golf. He is a lot like me and probably won't decide until the day!
Thanks for all the calls and e-mails! I know my last message was a downer and I am sorry once again. It has now been a year today that we went to the hospital and I spent a good portion of today reliving it all over and over. It was a very painful day to remember, but I do not want to forget any of it. We have come a long way in one short year and have many more years to celebrate together! Thanks for being there for us!
Have a great week!
God Bless! The Killian's
Wednesday, August 24, 2005 10:03 PM CDT
Shane was in to the Clinic this am for counts. His counts were still very good so he started his Chemo again. Hgb 11.5, Platelets 258,000, WBC 3,300 and his ANC 1584. He is able to start back on the same dose he had been taking before because his counts were so good. Now that he is on maintenance they will monitor his counts so they don't go too high or too low. They will decrease his oral Chemo if his counts drop and once they recover they will bump him back up to 100 They also don't let them get too high either, so they try to keep them in certain perimeters.
His shingles are looking so much better. They have all dried up, but are still visible. I sure hope he never has to deal with them again. He was a trooper through it all, as always, but I also know they could have been a lot worse. He shouldn't have any scarring either because he was able to leave them alone and not scratch. They didn't seem to bother him too much. He just can't wait to go swimming.
Shane is still patiently waiting to have his Birthday party with friends. As many of you know he celebrated his 7th birthday in January! I kept putting it off and then I kept thinking I would have a half birthday for him and never did! I feel so bad that I can't even get a party scheduled for him! I have a hard time scheduling a lot of things now that need some kind of notice. I know I should be very excited about his party because it means a lot to him. And if I don't have one he will never forget! Now school will be starting next week and then when does a person find the time? I am so thankful that he was with us on earth to celebrate his birthday and I know I shouldn't take for granted that he will be here for the next one. We don't know what lies ahead. All we can do is live day to day (and many times I take this too literally) and believe!
The Doctor we saw today was the one who met us at the Children's the very first day. It is hard to believe it will be 1 year on Monday that we met! So much has happened in a years time. It has crawled by so slow, but then when I think back on it I don't know where the time went. We are so Thankful to everyone for their love and support and for God's guidance for our family, Shane's Doctors and nurses and everyone who is taking part in our journey! We are still traveling the path that God has put before us and will continue on as we are lead until the end of Shane's treatment. And we pray that there are no more major bumps in the road, but if there are we will continue to stay strong and fight. We praise God for putting you in our lives. Thanks to everyone who checks in on Shane via website, he loves reading his messages. So please don't stop even if it's to say 'Hi'. He asks me to check many times a day sometimes or he asks if he can check 'his messages'!
Nicole was having a bad day yesterday. Everything is about Shane; Shane gets all of your attention; Shane gets everything he wants; Shane says he's sick when it is time for him to help and he can go lay down;.........too many to list! I know it has been hard on the girls this summer because they were home and I had them watch Amber when he had an appt. They wanted to have friends over but couldn't all the time 'because of Shane.' I didn't feel comfortable having them call their friends to invite themselves over there. I know how busy 'life' can get. The girls would have jumped at the chance! Now school will be starting and I will be losing my sitter's. So I will have to call on friends and hope they won't screen their calls or have caller ID!!
There are still days when I want to be the person who knew someone, who knew someone who had Cancer. I can barely remember life before cancer. It hasn't been all bad, but we will never have 'our life' back. Even after Shane is done with treatment if he gets a fever, swollen glands, complains of aches and pains or has an elevated WBC of course the first thing that will come to mind is cancer. I won't worry myself sick over it though (that is what my friend is for).
OK back to the planning thing! I want to have a party for Shane to celebrate his 1 year anniversary! Does anyone think it will really happen? I do hope to have it in September and I will let you know when. I figure if I have it then it will mark his year of being in remission! Cancer Free!
Thanks for listening! This got a lot longer then I intended!
God Bless! Jody
Wednesday, August 24, 2005 10:03 PM CDT
Shane was in to the Clinic this am for counts. His counts were still very good so he started his Chemo again. Hgb 11.5, Platelets 258,000, WBC 3,300 and his ANC 1584. He was able to start back on the same dose he had been taking because his counts were so good. Now that he is on maintenance they will monitor his counts so they don't go too high or low. They will decrease his oral Chemo if his counts drop and once they recover they will bump him back up to 100%. They also don't let them get too high either, so they try to keep them in certain perimeters.
His shingles are looking so much better. They have all dried up, but are still visible. I sure hope he never has to deal with them again. He was a trooper through it all, as always, but I also know they could have been a lot worse. He shouldn't have any scarring either because they didn't seem to bother him too much. He just can't wait to go swimming.
Shane is still patiently waiting to have his Birthday party with friends. As many of you know he celebrated his 7th birthday in January! I kept putting it off and then I kept thinking I would have a half birthday for him and never did! I feel so bad that I can't even get a party scheduled for him! I have a hard time scheduling a lot of things now that need some kind of notice. I know I should be very excited about his party because it means a lot to him. And if I don't have one he will never forget! Now school will be starting next week and then when does a person find the time? I am so thankful that he was with us on earth to celebrate his birthday and I know I shouldn't take for granted that he will be here for the next one. We don't know what lies ahead. All we can do is live day to day (and many times I take this too literally) and believe!
The Doctor we saw today was the one who met us at the Children's the very first day. It is hard to believe it will be 1 year on Monday that we met! So much has happened in a years time. It has crawled by so slow, but then when I think back on it I don't know where the time went. We are so Thankful to everyone for their love and support and for God's guidance for our family, Shane's Doctors and nurses and everyone who is taking part in our journey! We are still traveling the path that God has put before us and will continue on as we are lead until the end of Shane's treatment. And we pray that there are no more major bumps in the road, but if there are we will continue to stay strong and fight. We praise God for putting you in our lives. Thanks to everyone who checks in on Shane via website, he loves reading his messages. So please don't stop even if it's to say 'Hi'. He asks me to check many times a day sometimes or he asks if he can check 'his messages'!
Nicole was having a bad day yesterday. Everything is about Shane; Shane gets all of your attention; Shane gets everything he wants; Shane says he's sick when it is time for him to help and he can go lay down;.........too many to list! I know it has been hard on the girls this summer because they were home and I had them watch Amber when he had an appt. They wanted to have friends over but couldn't 'because of Shane.' I didn't feel comfortable having them call their friends to invite themselves over. I know how busy 'life' can get. The girls would have jumped at the chance! Now school will be starting and I will be losing my sitter's. So I will have to call on friends and hope they won't screen their calls or have caller ID!!
There are still days when I want to be the person who knew someone, who knew someone who had Cancer. I can barely remember life before cancer. It hasn't been all bad, but we will never have 'our life' back. Even after Shane is done with treatment if he gets a fever, swollen glands, complains of aches and pains or has an elevated WBC of course the first thing that will come to mind is cancer. I won't worry myself sick over it (that is what my friend is for).
OK back to the planning thing! I want to have a party for Shane to celebrate his 1 year anniversary! Does anyone think it will really happen? I do hope to have it in September and I will let you know when. I figure if I have it then it will mark his year of being in remission! Cancer Free!
Thanks for listening! This got a lot longer then I intended!
God Bless! Jody
Saturday, August 20, 2005 9:38 AM CDT
Good Morning!
We had Shane's appt. on Thursday and they increased his oral anti-viral Famvir and added a topical cream also. I am to call the on-call MD this week-end if we don't see any improvement and they would start IV therapy at home or in patient for the Shingles. His counts were good so that is why they didn't start the IV's on Thursday. They checked his liver and kidneys and they are doing well so they added a dose of Famvir in the afternoon. He has the shingles across his left chest, under the arm and to the back. He was also getting more going down the arm and seemed to get more areas of eruption until yesterday when I thought they were looking better. This morning the area doesn't seem to be as red and they appear to be drying. The area is getting smaller too, which we are Thankful.
We have a follow up appt. on Wednesday for counts again and hopefully he can resume his Chemotherapy which he had to stop on Monday, because his counts could drop seriously low during this outbreak and the Chemo could only make it happen that much faster.
Have a Great Week-end and I will update after his appt. next week. ~ Love, Jody
Monday, August 15, 2005 8:41 AM CDT
I heard from the nurse who talked to Shane's Primary MD and she said to stop his Chemo pills until Thursday when he goes in to be seen and probably have counts done. To call if he gets more eruptions or any questions. We have Tylenol with Codeine that he can take at bedtime and the nurse said to give it to him so he sleeps well. The blisters are still intact and none have broken open, so we will be watching for signs of infection.
His 1 year anniversary since his diagnosis is coming up and hopefully he won't have to start school late this year. He asked me today if this meant he had to miss the beginning of school again.
********************************************
Good Morning!
Another beautiful week here in the cities!
Shane has been doing quite well! On Tuesday we went to their swimming banquet and went bowling afterwards. We had a good night!
Shane started having some pain in his left chest area later in the week and I thought it was just from bowling. But Saturday night he had localized discomfort in the left shoulder blade and left chest are, but of course I didn't look at the area. I was thinking that maybe it was bone pain related to his Vincristine and praying it wasn't his Leukemia returning. I don't like having my mind stray to those thoughts, but it is one of the first things that pop into my mind!
Sunday morning he came into our bed and was still was mentioning the pain and said "look Mom." On his chest was a raised area of redness with small fluid filled vesicles. This left a faint trail under his left arm to another area on his back with more small blisters. I first thought of shingles since he was having the pain the few days before the eruption. So downstairs we go to Grandma Dottie and show her and get her opinion. She thought they also looked like shingles. So I made a call to the on-call and he did call in a anti-viral Famvir to hopefully get on top of them otherwise if they continue to spread he may need to be hospitalized for IV therapy and observation. So one more big pill that he takes twice a day for a week. He doesn't mind he just chews it up with some applesauce and he's done!
This morning he looks like he may have some more erupting on his front and back so we will continue to watch. These follow a nerve and as long as they stay within the one nerve and not spread to others we will be good. I have seen some patients that have it in the optic (eye) nerve and that is very painful! Of course these are older patients. I will be placing another call in to the Clinic and hopefully his primary oncologist so I can inform her too.
I will keep you posted with any updates!
Thanks for checking! Jody
Tuesday, August 9, 2005 9:25 AM CDT
Good Morning!<