|
||||||||||||
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!
Shane and his sister's had a good time at Camp last week. Nicole and Samantha can't wait for next year. Shane wasn't too sure when asked if he was coming back by his counselors, but he eventually said yes!
They had fun and kept busy. Shane was the only one who rode horse, because it rained at time the girls were scheduled. They did arts & crafts, many different kinds of scavenger hunts, swam, tubing and learned many new songs! Lots of hugs were given when it was time to leave! All of the Counselors were great and maybe ours will be there as a Counselor one day!
We spent the week-end up North visiting with Pat's brother Tom who we haven't seen in 5+ years. Shane was the same age as Amber is now the last time he was home. Pat took him and Joe Farrell fishing at Lake of the Woods on Saturday morning. They had a good time and actually caught some fish! and a sunburn too! So we had some good tasting Wall-eye for supper! On Sunday they worked on building a deer stand in the heat, but they did have shade from the trees. Then we went swimming and tubing and Grandma Dot even went for a ride in the tube! The guys went fishing again Monday morning but brought home nothing!
I helped move a few things for my Mom on Saturday to her new place and Amber was a big help! By time we left her new place it looked like it had snowed because she was busy tearing up styrofoam.
Shane is feeling good and his energy level is normal. He is finally coming down from his steroids. So he only has to eat every 2-4 hours instead of all the time! He didn't have the pain in his legs as bad this time. He did tell me he did have some pain while he was at camp.
So we will continue pray that Shane's Chemo is continuing to do its job and cure our little guy for good! With the help of God! He continues to be on maintenance and will go back in on August 24th for his IV Vincristine. Until then we will start preparing for school.
Please keep our friends in your prayers: Shane Y. who is nearly 2 weeks post Bone Marrow transplant, Kyle, Kevin, Mikaela, Portia, Brenna, Brandon and Aaron who's Bone Marrow transplant failed and his Leaukemia has returned. Aaron is at home enjoying life with family and friends. He is 6 weeks post-transplant and there is one more thing they can try, but he has to be 8 weeks post-transplant and remain in good health. We are praying that his health remains stable so they can try proceed with this option and that his pain be under control!
Thanks for keeping us (and our friends and families) in your thoughts and prayers!
Love, Jody
Thursday, August 4, 2005 9:04 AM CDT
Good Morning!
It is going to be a beautiful day here! The sun is out and I got a call from Shane!!!! I didn’t get to the phone in time so the Counselor said Shane was a little homesick and wanted to talk. So of course I picked up the phone right away and he sounded good! He told me they went swimming, horseback riding and they were going to tie dye their shirts today! He didn’t say much about his sisters. He didn’t ask for me to pick him up early and I didn’t offer! I told him I would be there after breakfast tomorrow. We can pick them up after 9:30 so I guess I will be there at 9:31! But with the schedule Amber and I have been keeping we will be lucky to get there by 11 am which is the latest pick up time!
I am so proud of all of them! Going somewhere totally new and not knowing many and staying the whole week! That is awesome! I can't wait to hear all that they have done and the many things they have learned about Cancer and how it has affected so many other families as well. I pray they want to go back next year. I pray that they felt comfortable with the Counselors and were able to share their feelings and how Cancer has affected our family as well.
Thank You to all the Counselors, Nurses, Doctors and all the staff for their time this week. All the kids will be talking of their new friends and experiences for a long time! Maybe one day one of ours will be at Camp Courage as a Counselor!
Have a Great Day! Jody and Amber
Wednesday, August 3, 2005 4:36 PM CDT
I received a letter from Samantha today and she told me Shane is very homesick and wants to come home... So this was sent on Monday and today is Wednesday and he hasn't heard from me so I bet he is feeling deserted! I was hoping he would have so much to do that he would be fine. I called Camp this am, but that was before I got the letter! I wasn't able to talk to his counselor but they said they would send a message. Now I am not sure what to do? I had the option of picking them up tomorrow and I may do that. But then I think if he/they have made it that long they should make it one more night. Samantha said she was freaked out, but has made some friends. She didn't mention Nicole so I hope she has adjusted well.
I may try and talk with someone in the am again and then make my decision.
Love, Jody and Amber
Sunday, July 31, 2005 9:28 PM CDT
Good Evening ~ Another beautiful week!
Friday night Pat and the Kids went swimming and tubing while I stayed back and tried to get the laundry done and things ready for Shane, Nicole and Samantha for Camp on Sunday.
Saturday we went to Nicole's swim meet and she once again amazed everyone by decreasing her time by 4 seconds. She was only 1 second away from going to State next week-end! It was so exciting! I was even watching the right swimmer this time! Pat was doing the taping because he thought he could do a better job. Well, he forgot to push the button to start taping! Maybe Amber can do it next time! Then off to the Lake for some more tubing and swimming!
Sunday ~ Today is the day I dropped off my Babies at camp! I was a little teary when we pulled in and I tried to sound all excited for them that we were there. I saw the Camp Courage sign and read it to them and my chin started to quiver, and my voice shaking, so I figured they would be better off if I just kept quiet! I think what got me more then dropping them off for the week was that I couldn't believe I was taking my kids to Camp Courage! Maybe it shocked me into reality again, that, yes it is true that my Shane is being treated for Cancer!
We checked them all in and went to their cabins and got them unpacked and settled. We hung out in thier cabins for awhile and talked with the counselors. They each brought a journal and that was the first thing that Shane took out and layed on his dresser at the foot of his bed. He started writing as soon as we got there. I hope he continues to write notes. We ended up staying about 2 hours which is alot longer than I thought we would. Samantha was playing another card game, Shane was going to play Uno in his cabin and Nicole was making a list she wanted to do while they are there. Nicole was the one that didn't want us to go yet, so I had to distract her and get her started on her list then we were able to go.
So far so good. I haven't heard a word from Camp so I hope they are all doing great. It is getting close to bed time so I hope they are tired enough to just go to sleep without too much time to think. I hope they have a wonderful time and make lots of friends and learn more about what Shane is going through. And also hear from other siblings that are going through the same things. Their cabins are right next to each other so I hope that also brings them comfort. we can send them mail so if anyone is interested you can address it using this format:
Shane Killian
Lakeside Cabin #4
Camp Courage
8046 83rd St. NW
Maple Lake, MN 55358-9774
Nicole Killian
Lakeside Cabin #5
Camp Courage
**Same address
Samantha Killian
Lakeside Cabin #5
Camp Courage
**Same address
I will add an e-mail address tomorrow if they can receive e-mails!
Sorry for the short notice on the address. I pick them up on Friday AM so if you do send something it should probably get in Mondays mail. So I had better get writing!
Thanks for all your prayers and for your time for checking on our family! God Bless You All! I will update next week-end re: their camp experience.
Love,Jody
Thursday, July 28, 2005 4:10 PM CDT
Good Day!
Shane did a great job yesterday at SSU! Samantha came along for support.
Shane's treatment schedule will be the same every 3 months. So when we got home I printed out his med sheets and numbered all the days so I don't mess up this time. Yesterday he recieved Methotrexate in his spine and will go in to SSU every 3 months to have this repeated. He also got IV Vincristine which he will continue to receive every 4 weeks. He will take oral Methotrexate every Wednesday, Mercaptopurine every night until maintenance is complete, Dexamethasone for 5 days every 4 weeks as well as his Zantac during this time to protect his stomach. Every Monday and Tuesday he will take his Sulfatrim prophylactically. That sounds like that should do it for the med department. It will be interesteing to see if he has those terrible leg pains again after coming off the steroids. If he does we will start him on something to help. Of course I can't think what that may be right now!
It just dawned on me that he will be at camp when he finishes the steroids. So I hope he doesn't have the same reaction. They are all still excited about camp and now we have to start getting things together. It will be so quiet here without them, but I am sure Amber can make up the difference! It will be good for them and I know they will have a great time!
Shane doesn't have to go in for 1 month as long as there are no fevers or other concerns. So we are very glad to hear that.
Well that is it for now! Take Care and God Bless! the Killian's
Tuesday, July 26, 2005 6:51 PM CDT
Hello!
Tomorrow is a GO! His counts were good today! Hemoglobin 9.3, Platelets 217,000, WBC 4,600, neutrophils 39% and ANC 1930. So we have to be at Children's by 7:30 am. Yesterday Shane asked when we are going to S.S.U. again and I had to stop and think what he was talking about. He was asking about Short Stay Unit! He never ceases to amaze me! His mind is always going. I wish my mind would try it sometime! He has lost all of his eyelashes and most of his eyebrows now. New eyelashes have already grown and the eyebrows have thinned out, but you can also see the new ones that have come in. He has been feeling great and hasn't slowed down at all! It is so nice to see! Thank You God!
Nicole did great at her swimming finals. She swam in 4 events and finished 1st in her heat twice! She now will swim on Saturday in 1 event, because her time was so good. If she gets a better time she will go to State the following week-end! She received 2 sixth place ribbons which are given overall. And there were lots of kids there! This was her first time swimming in an outdoor pool and it was twice as long as the one she practices in so she didn't have to do as many flip turns. Of course her last event was the backstroke and I was waiting at the finish line taping her and feeling bad for her because she kept running into the lane line because she didn't have the ceiling to go by. But little did I know that I was taping the wrong girl!! I didn't realize this until the girl had finished and turned around and I didn't know her! Nicole was in the lane next to her and already had her goggles up and resting!
Well I didn't mean this to be so long! I will update tomorrow after his treatment.
Please pray for our friend Shane who will be having his bone marrow transplant tomorrow and his brother who will be donating. May they feel God's presence during this waiting period. Jody
Tuesday, July 19, 2005 11:02 PM CDT
Hello and Thanks for checking in on Shane!
Our week-end adventure was a lot of fun and a well needed get away! Although Sat. morning Shane woke with a temp of 101.3, but it came down to 100 and stayed there until we left shortly after 12 noon. I felt fine with going because we were only going to Hudson, WI and it would be about the same distance to the Hosp. from there as it is from here. We stayed in a Hotel with our friends the Farrell's and swam most of the day and night. Had a great time but of course it was much too short. Sunday we woke and drove to Stillwater where we boarded the Hogwart's Express (otherwise known as the Minnesota Zephyr). It was a special 40 minute train ride they were doing because of the new book being released midnight Friday. Inside the train depot you could by a broomstick for $35.00 or a magic wand for $40.00 or $60.00! I did consider it if they would both work together and do all the wash and housework, but the guy couldn't guarantee it! So we left empty handed! The kids enjoyed the train ride, but kept asking when it was going to go faster! We took the scenic route back along the St. Croix. All of this took place with out Amber Lynn! She stayed behind with her cousins and had a great time playing! When I went to pick her up she was excited at first and came running, but then it hit her that I was there to take her home so she took off in the other direction! After a little (OK a lot) of coaxing she finally did come to me, but we left there with her kicking and screaming all the way to the truck! It is so nice to be loved! I am so glad that she feels so comfortable at Andy and Tiffany's that she doesn't even think about us! Thank You So Much!!
Monday Shane went in for counts. His Hgb was 8.9, platelets 149,000 (Yeah) WBC 3,100 neutrophils 13% and his ANC 403. His ANC has to be greater then 1,000 so we will recheck next week and hopefully he will be ready!
He is so handsome with out his hair! It is nice when it comes back, but I don't mind his bald head now. When he was a newborn I remember thinking that I hoped he would never lose his hair when he got older because his head wasn't the prettiest. But now it is perfect. He has lost nearly all of his eye lashes which is a first, but has kept his eyebrows.
Nicole has finals in swimming this week-end and we will be there to cheer her on. Both her and Samantha had a great year and earned many ribbons! I am so proud of them! I am not sure if they will stay with the team this fall or not. Samantha has had enough and said she was glad that she didn't make it to finals, but we will see how she feels this week-end. Samantha has the muscles to make a very strong swimmer. Nicole is still up in the air with her decision. Maybe after having some time off she will be ready again.
I hope you have a great rest of the week and week-end and I will update next week! Please remember in your prayers all the children and adults who are presently battling cancer and all the families whose loved ones are no longer suffering and are cancer free in the arms of Jesus!
God Bless You! The Killian's
Tuesday, July 12, 2005 8:24 PM CDT
Good Evening!
We are home after a long day at the Clinic. I scheduled the appt. because Shane seems to have more bruising and having headaches. Hard to know if it is the heat or ? He did have one episode of vomitting yesterday. We went in for counts at 10:30 and weren't seen until after 11:45. I am fine with waiting when they are busy, but I finally had to go ask if the nurse practioner was even in, because I hadn't seen her in the hall like we usually do. Then a nurse came in and apologized, because Shane hadn't been assigned to anyone so they didn't even know he was waiting. Then a different practioner came in and saw us. Hgb 6.0, platelets 46,000, WBC 1,100, Neutrophils 32% and ANC 385. I was glad to see his platelets were going up, but he needed another unit of packed red cells.. They were full in Short Stay so up to 8th Floor we went. He did have a temp of 100.0 in the clinic and it did go up to 101.1 while he was getting his blood. Hard to say why, but some do as a side effect of getting blood, I guess. He was running 99.3 and under yesterday.
Shane has the opportunity to go to Camp Courage the week of July 31 thru August 5. Nicole and Samantha can go with him also. It isn't far from here and they would be having a lot of fun. Swimming, horseback riding and many other things to do. There is a Dr. from Children's there and nurses as well so they will be giving him his medicines as needed. We will be needing everyones prayers to give Shane the courage to go. It is an overnight camp so he would not see us until the last day! This will be very difficult for him to do since he doesn't do well away from me at night. He has gone up north with his Dad and does OK. He gets really lonesome, so if anyone has any ideas I would love to hear them. Nicole was sleeping at her friends house by now (but always had her blanket), but Samantha just started last summer. Shane and Samantha never stayed attached to anything. The only fee involved is $60.00 per child for insurance. So now I just need to find an infant camp for Amber!!
I know there is more that I wanted to say, but can't seem to recall at the moment. I hope everyone has a great week! We have a little something special planned for the kids this week-end that I hope they enjoy! It is still a surprise! So I will fill you in next week!
God Bless!! The Killian's
Thursday, July 7, 2005 2:36 PM CDT
It sure is hard to believe it is Thursday already! Where has the week gone? Let's see...
On Tuesday we just played around the house nothing real exciting, but we like boring these days!
Wednesday was a different story. It started with Amber at 4 am when she woke up burning up and puking! Yeah! Her temp was 103. I noticed that prior to that she was talking in her sleep most of the night and when I pulled her in bed this continued and she would be reaching in the air also. I just figured she wasn't resting well with the fever. She slept for a few more hours then woke up and got sick again. She felt warmer so when I checked her temp it was 103.8. So I put her in the tub to clean her off and cool her down, but when she got out her temp was 104.8 so I gave her Motrin on top of the Tylenol she just had and applied a cool cloth to her. We were heading to the beach today. I wanted to get Shane out of the house since he was feeling good, so Tiffany came to get Shane and the girls and took them swimming. They have not seen much of their cousins since Shane has been sick so they had fun playing and swimming! Amber and I just snuggled. It has been quite along time since she just sat on my lap and didn't move! There were many times when I thought she was sleeping but when I would check she was just laying there with her eyes open! I did take her in to be seen after lunch, but they couldn't find anything to treat so we went home to wait. After her nap her fevers never did get the high again. After watching a fever in Shane so it doesn't go over 101.5 and then to see hers go that high. I think it seemed even worse.
This am Shane went in for counts and they are still low. Hgb 7.3, Platelets 21,000, WBC 800, Neutrophils 23% and ANC 224. We are waiting (there's that word again, I think someone is trying to teach me patience!) Hopefully his energy level will stay good and he doesn't have more bruising over the week-end. He will need to have labs rechecked at the end of next week for sure to see if he is ready to start maintenance on July 18th. Maybe even sooner to check his Hgb and platelets if we noticing increased fatigue or bruising. His platelets have to be atleast 100,000 and ANC 1,000 in order to start on maintenance. He has a long way to go, but I know he can do it!!
I also keep forgetting to add that Samantha had a great week-end at camp. It was about a week after she was home that I found some papers from camp and one was her notes of her first full day. "Today I have a big, big, big whole in my heart because I miss my family" We missed her her too! That was her first week-end away alone.
Shane is in good spirits and enjoying summer. Be sure to check out the new pictures I added a few weeks ago if you haven't already.
God Bless! The Killian's
Monday, July 4, 2005 11:09 AM CDT
Happy 4th of July to All!
We went in to the ER on Saturday afternoon for some help/ideas on how to get Shane more comfortable. Shane was having a lot of pain from the constipation so they wanted him seen. They did an X-ray and it showed what we knew that he was full! It took 2 hours to figure that one out, which I knew the answer to the day before! But thankfully nothing else was found on the x-ray. They did not want to do an enema or even a rectal exam because of the chance of introducing infecton and then we could have a bigger problem. So the next thing would be to insert a NG tube (nasogastric). This is an ~18" tube inserted in the nose that goes down to the stomach. He would be admitted and given some GoLytely in the tube until he has results.
So that is what we did. The tube was inserted without difficulty. But not without a struggle! I had to hold Shane's hands and lay across his legs (mainly to keep my grip on his hands). His gagging would force the tube out his mouth instead, but we did get it down. Then to x-ray again to check for placement. It was in an 1/2-1" too far and was curling up against the stomach wall so they were afraid that if they start the GoLytely it would not go in. So they took the tape off and pulled it out, then retaped it. So after another 1 1/2 hours wait we finally got to go up to his room. Which happened to be his first room he was in the first admission. So I got to relive that day much more vividly.
So another 2 hours and they finally got him started at 10 pm. Yeah! They started the drip out at 250 and it would be increased by 50 every hour until it hit 750. I was hoping he would just go on his on and we could leave since it was taking forever! So we waited for the magic to happen. And it did, but not until 4 am! We had been up trying at least every hour until then, but nothing! He felt so much better after that and we actually got a little sleep!
Dr. Sencer stopped by in the morning and said we could go BUT wanted to check his counts first since they had been low. Hgb 5.6, Platlets 43,000, WBC 600, neutrophils 60% and ANC 360. So we got to stick around another 4 hours for him to get a transfussion. Of course he didn't mind at all! So when we got home I gave him his IV Chemo and took his needle out for the last time! If all continues to go well and he doesn't relapse. Next appt for counts will be Thursday.
After his nap it was off to Target to keep my end of the bargain. Since he was so brave once again! I owe him!
Thanks for all your prayers! Love, Shane and Jody
Saturday, July 2, 2005 10:35 AM CDT
Good morning! The sun is shining here in St.Michael and hopefully will continue to shine all week-end! There is some rain in the forecast so we will just have to wait and see what the Good Lord brings us!
Thursday night I went to Tucker's services to give my support and when I got home Shane told me it hurt to breath at times. He was having pain in his right upper portion of his back and below the rib on the same side. With his low Hgb I knew this could be a concern, so I slept with him that night because if he did have more trouble I didn't know if he could make it to our room. He slept so quietly that I had to wake him many times to make sure he was OK! Nicole left today with her friend Erin to go to their cabin for the long week-end.
Friday ~ Shane's nurse called today with his ANC of 276. So it is low and he is more suscepticle to infections, but it wasn't as low as I thought it may be with his low WBC. His breathing is still good and no wheezing or struggling that I can tell. Now our new battle is constipation and abdominal pain. He has been having the urge to have a bowel movement but nothing comes but a little liquid stool. So I was still trying to decide if I should go up north for the week-end or not. My mom is moving soon and needs help, but thankfully my brother and his friend Star are able to help her. As well as many friends. I would like to see my 'little grandma' as she is still in the hospital recovering. Many things I would like to be there for, but I just didn't feel comfortable taking Shane so far. So.... afternoon sometime I was sitting in the bathroom with Shane and helping him wipe because his bottom hurts a lot. There was our answer.. he had blood in the stool and on the paper. There was not a lot, but enough to make my decision. I called his nurse ~ 4:45 and she said to give him another dose of his Glycolax and pick up some Milk of Magnesia. Yummy! The Nurse Practioner she talked to thought the second dose of his softener would do the trick and wait with the MOM until morning. But his nurse said To give the MOM if he is in that much discomfort. So I did. The bottle said results in 1/2 - 6 hours. Yeah right! We are still waiting and it is after 10 on Saturday!
Pat took Samantha & Amber up north to enjoy the week-end, so I was feeling down for sometime after they left. Shane was taking a nap and I quess the house was way too quiet!
I did call the on call doctor last night because I was wondering about a blockage. Since all he is getting out is small amount of liquid that doesn't even make it to the water. Shane says he can't push it out because there is something in the way. So whether that is hard stool or a blockage. She wasn't too concerned at this point and thought he would have results during the night. She said to continue with his Glycolax twice a day for a few days then daily.
So we will wait. I will call the on call if still no results by this afternoon.
Thanks for checking in and have a Happy and Safe 4th of July!
Shane and Jody
Thursday, June 30, 2005 12:43 pm CDT
We just got home from Shane's appt with his primary oncologist Dr. Sencer. His counts are doing what was expected so that means dropping again. His Hgb 7.6, Platelet 52,000, WBC 600 which is the lowest so far. We didn't wait for the ANC to be back today, because I left all the girls at home so I knew I was needed there ASAP. I will get the rest later today and update.
We got to see our buddy Shane at the clinic and snapped a few pictures. He will be starting his work up at the U of M on July 5th (which is a week long process) for his Bone Marrow transplant to be done in a couple of weeks. Our prayers are with them. It is so nice to see our boys full of energy and feeling good again.
My Grandma Scott was taken to the Hospital last night by ambulance because she was having pain in her chest and back. Her EKG's and blood tests look good so it appears to be in her spine. Her bones are very thin.
I will write more when I know. Jody
Sunday, June 26, 2005 4:31 PM CDT
We hope everyone had a great week-end! We went to the parade in Rogers on Saturday and church on Sunday. It has been a few weeks since we have been to Church and it felt good.
Thanks to the Springfield family for baking cookies and other goodies and selling them at their aunt Peg's garage sale. They also sold beverages. They raised $130.00 and brought it over for Shane a few weeks back. They are some good cooks! Shane went to Pre-school with their daughter Rebekah. God Bless You!
Shane went in to the clinic for counts on Wednesday and they were great! Hgb 12.1, Platelets 153,000, WBC 4400, Neutrophils 46% and his ANC was 2156!! I showed them the bump on his chin and they feel it is just bone. Of course to watch it and be seen if it grows! He had a chest x-ray because of his cough and the fevers, but the x-ray looks good and will be sent out to the radiologist to be read. So he returns Thursday am for treatment.
Samantha joined us for treatment on Thursday. Shane received Methotrexate in his spine, IV Cyclophosphamide (CPM) and his Cytarabine (ARAC). They will leave the needle in his port because the ARAC is the one I will have to give him the next 3 days and then remove the needle on Sunday. He will also be taking an oral Chemo for the next 14 days at bedtime. They also started him on Zithromax (antibiotic)for his cough. The Dr just wants to be sure it wasn't the beginning of something more serious. He still takes the prophylactic Septra 2 days a week, but could still get something else. His oxygen level in his blood was normal.
They did recheck his counts before the procedure and they didn't change much so we were glad to see that. Hgb 11.6, platelets 161,000, WBC 3600, neutrophils 39% and ANC 1764.
I still have my cough also and if it doesn't improve soon I will have to go in and be seen. When I breathe I can feel it way down in my chest. It almost feels like my stomach is talking! I also know rest is needed, but that will have to wait.
After Shane's final treatment at home today we took his needle out and he is now off at the neighbor's watching the movie 'The Unfortunate Events of Lemity Snickets" or something like that!! He has had a few episodes of nausea and vomitted once on Friday, but it was my fault because I didn't give him his medicne for the nausea. So I hope he is able to finish the movie without incidence. Samantha video taped the treatment today for us and took pictures. Nicole has been gone all week-end with Meghan. Her daycare lady's daughter and family. She will return tonight and stay long enough for me to wash her clothes and then leave again on Thursday for the long holiday week-end! Pat went fishing this morning and haven't heard from him yet so I hope we will have some wall-eye for supper!
Shane will return to the clinic on Thursday for counts and the ARAC again for 4 days. So we are not sure what the Holiday week-end will bring. I hate to leave town if his line gets plug or something. We will just have to wait and see what his counts are first then decide.
3 more weeks until Shane will be on maintenace therapy which means no more delays in treatment! We couldn't have made it this far without our faith and Prayers and all of you! Thank-You!! I am sure I will calculate his last day of treament and when I do I will let you know!
Please keep Tucker's family in your prayers, he earned his angle wings yesterday. Shane went to school with his cousin. Also pray for Shane Y. who will be starting workup for a bone marrow transplant in July. He has Acute Myelocytic Leaukemia and is undergoing treatment at Childrens , but will be at the U of M for the transplant. Pray for others we are also following; Brandon, Jenna, Kevin, Kyle, Portia, Jessica, Aaron (who is recovering after his bone marrow transplant). Also Jacob who is in Australia and now has pneumonia and isn't expected to make it through the night.
God Bless You and Thanks for Everything!! The Killian's
Sunday, June 19, 2005 10:43 PM CDT
Happy Father's Day! We hope everyone was able to enjoy the day with family! We let Dad sleep this morning for as long as Amber would allow!
So far this week Shane and I have 2 all nighters and they are not getting any easier! Maybe twenty years ago, but not these days!
Shane woke up Friday with a fever of 100.9 and it never did go above this, but it never returned to normal. I had called the clinic because last night when we were at the lake he found a bump on his jaw. Of course I automatically think the worse right away, but told Shane's nurse which relayed it to the Dr. She wasn't too concerned and felt it would be fine to look at it in the clinic on Monday when we come in for counts. But she also gave me the option to be seen Friday if it would help me feel better. I decided Monday would be fine since it was only a few days to wait. His fevers continued through the night and at 3 am it went up to 101.9. I didn't want to give him Tylenol because we need to see if the temp will come down on its own or see how high it will go. Fevers are not a bad thing they are just telling us that our body's are fighting an infection of some sort somewhere! We just have to watch them more closely because of Shane's port in his chest. If he were to get an infection in the port it could be really serious so that is why with the fevers they always do blood cultures to make sure there is no infection in his blood.
Friday we got to go pick up Nicole from Camp Wapo in Amery, WI and drop Samantha off for the week-end. But the time frame for pick up and drop off where 4 hours apart. There was also going to be family camp this wee-end also so Samantha stayed and hung out with our Pastor and his wife and family. that was a huge help since Shane was still not doing well and it was a lot of walking around the camp. We got there (finally) of course late! There were so many turns and curves I wasn't sure if I was coming or going! We were late for closing ceremony, but heard them sing some songs. I was searching the big group for Nicole and could not find her anywhere! I saw other kids I knew, but not her. I knew (hoped) she was there somewhere! I kept moving around the outside of group and scanned all the faces. Finally I caught a glimpse of someone in a stocking cap, which kind of looked like her, but I could not be sure! I kept looking at this person from many different angles and when I thought she was looking in my direction I would wave. But I never got a response, so I thought it must not be her so I started scanning the crowd again but kept stopping on this girl in the cap! Well finally she took her cap off (it was hot, sunny and 80's). She once again looked my direction and saw me this time and smiled! Then I knew it was her. She was gone only for 1 week, but had changed sooo much! I then had so many tears in my eyes I couldn't see her anymore! Then they were breaking up in their small groups for prayer, but she came and gave me a hug first and I could have sobbed like a baby but I didn't want to embarrass her so I kept myself together! Except for the tears. I was so proud of her! Her counselor came up to us and had nothing but praise! Amber wasn't too sure of her either until she took her cap off and started talking! It sure was nice having her near me again, but I had to leave Samantha! Only until Sunday! On the way home we stopped in River Falls to visit Nicole's friend Meghan and family. This was her old Day Care provider from Maple Grove. We had a great visit!
All day Saturday Shane kept running fevers but where going up and at 4:30 pm it was 102.0 and I called the Dr. to see what she wanted me to do. I gave him his Tylenol w/codeine since he was having a lot of pain again. She was fine with observing him, but if it didn't go down or went higher to call. So of course by 11 pm it was 102.3 and by the time we got to the ER it was 103.3! With out knowing what his counts were we had to bring him to see if the had dropped or stayed the same. So we saw the ER Dr and they checked his counts, blood cultures and started an IV antibiotic. Hgb 11.7, Platelets 73,000, WBC 3,000, Neutrophils 14 ith an ANC of 416. So by this time it is 4 am and they had talked with the on-call Dr. and she felt it would be fine to go home. Shane slept all this time which he has never done on other ER visits. He napped a lot during the day too, so I knew he wasn't feeling well. Still having some pain but not needing the codeine as often. Still very weak so he needs help with the steps again. I feel better being there by his side just in case he needs to lean on me completely.
So I slept for about 3 hours and I am still not sure how Amber got out of her crib! I hope Nicole helped her! So it was off to Amery to get Samantha. I took Amber with to keep me awake and she sure did! Sam could have caught a ride back with someone, but I wanted to be there for her too. Lots of stories to tell. They both learned many new songs and most importantly became closer to Our Heavenly Father!
Shane slept until shortly after Noon and his body needs the rest. He called me about 4 pm and his temp was 101.7 again. I updated the Dr. this am she said she felt better knowing what his counts where and that it was OK for him to run a fever up to 102.5 or so, since he got the antibiotic this am and that is still working. To call in if he appears more ill or increased temps.
He did need another dose of Codeine this evening so hopefully this will also keep the fevers down for the night.
Thanks for the cards with words of encouragement and inspiration, they are greatly appreciated! Shane ate all of the M&M's and didn't share a one. But I don't need the calories like he does!
Next appt for counts will be Wednesday with hopes to start treatment again on Thursday. I will update then and I promise I won’t have as much to say!!
Love, Jody and Shane (who just appeared at my side and his head feels cool!! Yeah!!)
Thursday, June 16, 2005 4:28 PM CDT
Today is a much better day! Thanks for letting me vent the other night! And just when you think you can’t do or give anymore…………….
Shane was up all night after the ‘woe’ are we journal entry. He had the worst pain in his legs that he has ever had. It brought me back to August 29th when we first brought him in to the ER. He may have got a total of 30 minutes sleep top and I know I got a little bit more then him, because he would wake me every time I would stop rubbing his legs! I gave him more Advil after I signed off and Tylenol at ~2 am. He had a bath about 3 am and otherwise I just layed with him and rubbed his legs and warmed the heating pad. And of course praying that he didn’t have blood clots in his legs that were causing the pain and I was going to dislodge them and go to his heart. But I was also thinking what are the chances of having a clot in each leg? There was one point about 4am where he had been sleeping for a few minutes and wouldn’t you know it Amber woke up! The last time she did this was when she had her ear infections. But she probably woke because she could her Shane crying. So I took her in our bed to get her to sleep and I told Shane that I would be right back after she fell asleep. It didn’t take her long, but it felt so good laying there that I fell asleep! But it didn’t last long because Shane came in reminding me that Amber WAS SLEEPING. So I carried her to her bed and crawled in next to Shane and continued to rub his legs, warm up the heating pad and cry along with him. Good thing it was dark so he couldn’t see me. At 6am I gave him another dose of Advil and helped him walk to my bed. Between the weakness and the pain he wasn’t moving well. He couldn’t even stand without help when he washed his hands.
The clinic doesn’t open until 8:30 but by 7am I couldn’t take it and called his nurses voice mail and left a message to call us. So when I didn’t hear back by 8:50 I called her again and informed her of our night and wondered what to do. She said she would find someone to write an Rx for Tylenol with Codeine and would call it in to our pharmacy. So while we waited we went for a walk to try to get his mind on something else. I pushed him in one stroller and the neighbor pushed Amber in another. About 11 am I checked with the Pharmacy to see if it was ready and that hadn’t received a call yet! So I called his nurse and she was trying to catch someone to write one. We had to leave by 11:15 because I had an eye appt, so she did call me right back and said Linda (nurse practitioner) thought they would just called in some Elavil for him and be seen Thursday. I told her I could bring him in then if someone could see him and she said yes, but their office closes at 12:30! So I flew around here to get Amber and Sam ready to go to the neighbors and we were on the road by 11:20. Of course driving through Maple Grove I remembered my eye appointment and Pat had my phone so I couldn’t even tell them I wasn’t coming.
We got to the clinic at 12 noon and carried him in to where there are usually wagons to greet us, but of course there wasn't any in sight so I continued to carry him as far as I could and then we just walked slowly to the elevator. We found a wagon for the ride up the elevator!!It was good that he didn't have to stand and it did come in handy for the short walk to the clinic. I must have been stronger in August because I carried him in then too but made it all the way to the 8th floor! I know I had help that day. When his nurse came out she couldn't believe how much pain he was having. She didn't think he was that bad. So we checked counts and saw Dr. Bendel and she didn't think anything else was going on. She thought the pain was just related to his Vincristine or coming off his Steroids. So she ordered some Tylenol w/Codeine and he was like a different person 45 minutes later. He even had a smile on his face. The Codeine did work! It didn't make him sleepy or have any side effects. She did also order the Elavil for him to take at bedtime. So he walked out of the Hospital and didn't quit talking 'til he fell asleep. He has many days of conversation to make up for I guess!
We came home and he slept a little I think. I was on the phone and he would answer some questions or give some input and he was totally making sense. So he was faking it! We went to visit the Farrell's and had supper with them. I did give him more Tyl w/Codeine ~8pm but he still wasn't in much pain, but I didn't want it to get too bad where we had to try and play catch up. He thought he would be fine through the night and didn't take the Elavil either, but I told him to wake me and I would give it to him. He slept all night! Thank You God!
This morning he came in and I asked him how the pain was and he said "my upper torso hurts alittle" but I think he was more hungry then in pain! Today has been a great day! And I guess you can tell by the length of this entry!!
His counts yesterday were Hgb 14.5, platelets 107,000, WBC 2,800, ANC 444. So we will recheck counts on Monday still to see if he is ready for Chemo on Tuesday. He needs to drink Gatorade for his liquids to increase his Potassium. And eat Tums to increase his Calcium which may help his leg pain also. Some patients take a Potassium pill when they take the steroids and that seems to take care of the pains. His Potassium was good at 4.2 and his Sodium was a little low at 129.
Well that is enough for now. Thanks for checking on us! Love the Killian's
Tuesday, June 14, 2005 10:46 PM CDT
Good evening! This will probably be another short one because words aren't coming easy these days.
Shane had his counts done yesterday and they were very good again. Hemoglobin 13.3, Platelets 90,000, WBC 2,500, Neutrophils 70%, ANC 1,800. They should have bottomed out by now. I can't help but wonder (and always will) if it is related to him not getting all of his PEG shot. This was the one that leaked onto the floor a few weeks ago. So of course if the cancer comes back I will always go back to that one shot, whether it is related or not. The Peg shot destroys leukemia cancer cells in all phases of cell life. So I will continue to pray that he received enough of the medicine to do its job!
I am feeling very low these days because our little boy is in much more pain again and his beautiful hair is falling out again (this is such a minute thing, but it is a very strong physical reminder). I just have to tell myself that his Chemo is working and it will come back! But we are hopeful that this will be the last time. He has lost all of his energy and spends much of his day just laying down on the couch staring at the walls. He is having pain in his lower legs, which I have been giving him occasional Tylenol for, but doesn't give him much if any relief. He justs lays there moaning and groaning and sometimes screaming out in pain. Today I had heard enough and shed many tears with him and called his Dr. and she said I could give him some Advil but not more then 3 times in 24 hours because his platelets are low. This has helped some along with us rubbing his legs. Even Amber has got into rubbing Brother's legs! It is so cute until those times she decides she needs to sit on him.
Nicole is away at camp for the week so Samantha is my only helper which she does a great job, but it sure is nice to have them both here especially when Shane is needing so much from me, even if it is only to sit by his side and just hold him. Or get him something to eat every 2 hours. He has lost 3 pounds in a week.
He goes in for counts on Monday because his Platelets have to be >100,000 and ANC >1,000 for treatment on Tuesday.
Well he is calling and I can't think anymore and I am not sure if any of this even makes sense. I will add more later if the words come to me.
Good night and God Bless! Jody
Monday, June 6, 2005 5:32 PM CDT
We are home again! Shane had a great week-end at the Erskine Water Carnival and was busy all day long on Saturday! He started at 8 am and didn't slow down until 11pm! Many rides and games to keep him entertained. And of course the FOOD! Sunday it rained so we pretty much stayed in doors, except he did get to race a turtle before they decided to cancel the race. It was a very nice week-end all in all though. Lots of family time. And of course my 20 year class reunion was a lot of fun. It's still hard to believe. Some of us have grown, but not aged!
Shane had his Chemo this afternoon and it went well. His counts surprisingly didn't change that much which we all couldn't believe. Hemoglobin 12.1, Platelets 150,000, WBC 3100, Neutrophils 63% which made his ANC 1953! He will take one week of steroids and we will recheck his counts next week.
I guess that is it for now! Thanks for checking in on Shane and God Bless! Jody
Thursday, June 2, 2005 11:38 PM CDT
Shane had his Chemo on Tuesday and once again did a great job! His counts were very good, but that was to be expected since he was on his steroid last week, but they expect them to fall rapidly and be quite low again next week.Counts on Tuesday were good with his Hgb 12.3, Platelets 246,000, WBC 4200, Neutrophils 49% which makes his ANC 2100. Looking back to January when he was in Delayed Intensification the first time his ANC was 2795 at this time and the following week it was 136 and he was running fevers too! So we will take it as it comes and pray he doesn't end up back in the Hosp. He did have some nausea on Wednesday am but he didn't take any Zofran and it passed on its own. Shane and Samantha both had their eyes checked on Wed and Samantha's glasses are on order and Shanes weren't as bad as originally thought so we will recheck his again in August and get glasses for school if they haven't improved.
A Hospitalization in the summer would be very interesting to find a place for the girls! At least when they were in school they would get ready and catch the bus and Pat would take Amber somewhere for the day. But we have a neighbor girl Alesha who has been a great sitter for all of them, but it would be too long of a day for her and the girls.
We will be limiting his visitors again to those that are healthly and haven't been exposed to any illness. Which this can be difficult for the girls too, because they want their friends over to play, but get tired of being outside all the time.
We are planning to go up to Erskine this week-end if Shane stays fever free. He was having a 'hot flash' earlier tonight and his temp was 99.1, but it never did go any higher so we will see how he is in the morning. Erskine is having their Water Carnival and my class is having our 20 year reunion. I can't believe it! I am not that old! It will be a good time seeing everyone again!
Amber is on another antibiotic for her ear so hopefully this will help her dispostion! Her favorite word these days is 'NO'! Imagine that!
Well, that is it for now and I will update after his Chemo next Tuesday! God Bless! Jody
Saturday, May 28, 2005 8:12 PM CDT
Good Evening! We hope everyone has safe travels this week-end! We have decided to stay home this week-end since Shane got his shots on Thursday. He didn't have any problems with them, but 1 block before we got to the Hosp I remembered that I forgot his Emergency Kit at HOME! This is the kit we need to keep with us at all times after he gets the shots just in case he starts having a reaction. So they ordered us another one for $60.00. So we now have 2 Epi pens. Hopefully we will never need them for anyone!! We went to WalMart that night to get teacher gifts and left both of them at home! Glad we didn't need them.
Shane has lost his 'Get Up and Go' once again! He does fine playing for a short time, but then I will find him just sitting or laying around in his bed. He isn't in any real pain, but it sure makes my heart hurt! I knew this was coming again but it isn't easy to see! I know it will only get worse over the next few weeks!
He was able to finish school off with flying colors! We wrote a Thank-You note to the teachers and brought in some goodies for them on Thursday. They have ALL been great to our family and we will miss them when we go to the new Hassan Elementary next year. Nicole and Samantha's teachers are husband and wife and are retiring this year so that was sad! Nicole had Mrs. Stensgard last year also and had a great year with her too. Shane handed out Thank-You's to his class for being so good to him and gave them all a CureSearch: Reach The Day lime green wrist band along with his website address if any of them wanted to write in his journal. He loves reading them and gets sad when there aren't any new ones. So drop him a line it'll make him smile again! Thanks! I brought them Subway for lunch on Friday and when I was with Shane's class it brought tears to my eyes to see them all wearing their wristbands!
Dad, Nicole and Samantha just left to go fishing! Sam and her Dad tried a few hours ago, but got there and the boat wouldn't start so came home to check it out. He finally figured out that the ?tether was broke after a few hours so we are glad it wasn't something big! But I guess I better wait and see when they get back!
Happy Birthday Grandma Lorna! Wish we were there!
I will write more after his Chemo on Tuesday. Love, Jody
Tuesday, May 24, 2005 9:28 PM CDT
Shane started his 2nd Delayed Intensification phase yesterday morning. Things went well except for the fact that I over slept and we were 25 minutes late! I was awake at 6 am and the next thing I new Shane was crawling in bed with me at 6:40! Nicole came with us and still doesn't care to be in the room when they give him his sleepy medicine. We were the only ones scheduled for Chemo and Lumbar Puncture so if we could have been on time we may have been out of there by 9 am. But then he wouldn't have had time to play Play station! His counts were barely high enough to do his Chemo. His ANC had to be greater then 1000 and his was 1054. His Hemoglobin is still good at 11.5, Platelets are good at 235,000, WBC is 3400 and Neutrophils 31 So they gave him Methotrexate in the spine, Vincristine and Doxorubicin IV in his port.
He goes back Thursday afternoon to get 2 PEG shots in his legs, which he is not looking forward to! He has to take his steroids for 1 week at a time every other week this month, along with his Zantac for his stomach.
He stayed home after treatment on Monday because he said his stomach wasn't feeling good. And that is a side effect of the Doxo, so he came home and slept. I told him no TV or movies or computer games and of course his come back was "not even learning games?" He has an answer for everything these days! He went in to school 45 minutes late today also because his stomach hurt. On Wednesday they have their 1st grade picnic at the Otsego Park and they get to walk there! I am so glad they are done with school this Friday so I won't have to continue guessing if he is indeed not feeling well or just wants to stay home.
We will go into the clinic next Tuesday for IV Vincristine and Doxorubicin and blood counts.
That is about it for now other then it sounds like Samantha and Shane are both needing glasses! They had free screenings last Saturday and Samantha was about 20/40 and Shane was 20/50 and 20/70. Nicole got her glasses at Vision World just like we do and I think that will be fine for Samantha too, but I feel Shane should have a more in depth exam. The eye exam itself is >$200.00 and the Dr would be willing to do his exam at a discount. So if any one has some input to help our decision making that would be great.
Have a great week! Love, the Killians
Thursday, May 19, 2005 1:04 PM CDT
Hello to all and Thanks for checking in on Shane and our family.It is hard to believe it has been nearly 9 months! It feels like we have been doing this all our lives, but then it seems like yesterday that we got the news! We couldn't have gotten this far without everyone's prayers and support!
Shane stayed home from school until after his counts on Wednesday. I just didn't feel comfortable sending him without knowing what his counts were and there is a lot of illness at school. His counts were better so I dropped his off at school. His Hemoglobin was 11.5, Platelets 286,000, WBC 3100 and his ANC was 589! So his counts are recovering and they have him scheduled for Monday 7:30am to start his 2nd Delayed Intensification Phase! He will get Methotrexate in his spine, IV Chemo weekly times 3 (Vincristine,Doxorubicin)PEG shots in his legs by the end of the week. He will be on steroids every other week this month. So I better stock the fridge and cupboards now. We only have one early appt this month so that is good! The others are done in the Clinic.
I will update more next week. The kids are done with school next Friday so THEY are excited, of course. Jody
Saturday, May 14, 2005 2:10 PM CDT
Hi Guys! I am HOME! Love Shane
They decided to let us go this AM since he hadn't spiked any fevers since stopping the antibiotics. His counts actually went down and they aren't sure why, but we will recheck next Wednesday and they should be on the way up by then I hope!! Shane's ANC on Wed was 75, Thursday 144, Friday 150 and today back down to 99. His Hemoglobin has been good the whole time between 10.5-10.9. Platelets good between 203,000-256,000. White count on this admission was 2500 and has been slowly going up to 3300 today. I am glad to see this go up, but also concerned that he doesn't have any Neutrophils today which he needs to give him a higher ANC. He does not have any Blasts (cancer cells) and continues to be in remission since his first week of treatment. He will miss the beginning of school next week until we find out what his counts are. Then they are done with school the following week so he will finish school with a good amount of hair on his head! But will lose it all one more time, but it is no big deal now, he is used to it I guess. I am glad we are home, but Shane isn't too sure! He once again would have rather stayed in the Hosp. There is no room service here! I think Pat was the most excited though he was waiting for us to drive in the driveway so he could go fishing! I hope he packed lots of warm dry clothes!!
Ronald McDonald came to see Shane before we left and he got his picture taken with him and his autograph! He is so tall!
We met lots of great patients and families this time so I do have to admit it was a good time! There is a 6 yr old named Shane there with AML so I visited with his Mom. I met her once before in the Hosp shortly after her Shane was diagnosed and remember all too well those feelings and fears. I still have many, but will continue the fight!
We Thank God for each and every day we continue to have here on earth with our family and friends!
God Bless! The Killian's
Monday, May 9, 2005 2:41 PM CDT
Hi Everyone!
So sorry for the long delay in updating Shane's webpage. Not sure where to begin since it has been such a long time. Last time I updated; Amber and I were headed up north to say Good-Bye to Baby Alex. It was a beautiful service and he looked so peaceful! Check his site if you want to learn more about the service. It was quite an awakening. Even though Shane's prognosis is very good and his Dr.'s are very optimistic it is a normal for us to think what if things changed? And we all know that could happen at any time! And it has crossed my mind many times since this all began, but it sure became much more a reality when I saw baby Alex for the last time. I couldn't help thinking what if it was us? It was a very long drive home that night and lots of time to think (when Amber was sleeping of course).
Shane has been doing quite well. It was 2 weeks ago today that I met the kids at Good News Club for a special parent/grandparent day. This is a Bible Study that meets every Tuesday after school til 5 pm. they were having a special presentation by 'Uncle Chuck" He did a great job with his story and sometime after one of the prayers Shane Looked at me and asked? "Did you feel that?" And I said 'No, what was it?' Shane said, "It was the Holy Spirit, I just felt it!" Then he turned back around and started listening. He caught me totally off guard. Also 'Uncle Chuck' came up to me and we started talking and he asked to pray with me when I told him about Shane and that always feels so good.
That same night we ended up in ER For fevers, but we didn't have to stay. They checked his counts, blood cultures, gave him an antibiotic and did a chest x-ray because the Dr thought he may have heard a little wheeze. The X-ray came back and he said there was something on the x-ray but it didn't look worrisome and probably related to his little cough. But before he came in the room he grabbed Shane's lab results and as he was walking away he said 'Oh s***' So he had me going pretty good there for awhile. Still not sure if he forgot to do something on another patient or what because his counts didn't look too bad to me! Called his Dr. the next day and since he wasn't running a fever anymore I was just suppose to watch him.
So Shane had a recheck appt on May 2nd to check counts to see if he is ready to begin his last Delayed Intensification Phase which was suppose to be started May 4th. Counts were too low and to recheck in 1 week. Not sure if I had anything to do with his counts being too low or not because I was suppose to stop his 6MP on April 27 but I kept giving it until May 1. They said it probably wouldn't make that much difference anyways. I guess I will go back to checking his schedule 10 times a day to make sure I don't mess up again. It was just too routine I guess.
So that about brings us up to today! Shane has been running fevers again since Friday night. Saturday late afternoon they went up to 103.6 so I called the Dr and he said to go ahead and give him Tylenol and make sure they go down and if they spike again to call and would need to be seen in the ER. They slowly went down to 98 and started creeping up again during the night but not over 100 so we were safe to stay home. Sunday am they were up and down but he was still able to run and play with his friends. This morning they spiked again to 102.6 at 3am and he already had an appt at 9am so as long as he wasn't appearing extremely ill we just waited and watched them to make sure they didn't go any higher. Our wonderful neighbor Marcey was able to take Amber this am just in case. We came to the clinic and they checked his blood and things were looking good but we were there for an awful long time and his Dr came in and said she now knew why they were taking so long because his ANC was "in the toilet" meaning ZERO. So since he still had fevers she had to admit him and give him antibiotics and observation until his fevers go down. The ANC wouldn't have been too worrisome if he still didn't have the fevers. It was still 101.4 when we got to his room. So of course he wasn't too sad about the admission he has already played Playstation and had room service! What a life. I am sure I will be making a trip to McDonalds soon.
Tuesday ~ Shane had his labs and blood cultures this am because he continued to run fevers through the night. They have been under 101.6 today, but they are keeping him one more night to see if they subside. He is happy of course!
Nicole found out she needs glasses and will be going to pick them up tonight and I am sad that I will have to miss it. Oh the little things in life that mean so much!
Wednesday ~ Shane will be staying one more night because he still ran a fever last night and this am it was 101 again. They drew his labs and his ANC is low at 75 but other counts look good. His ANC needs to be 1000 or better before he can start the next phase. For some reason it was not done yesterday so we don't know if it has gone up or down since yesterday. I found out yesterday his ANC was >150 on Monday so I was very pleased that it wasn't ZERO! They have stopped the Fortaz (antibiotic) and are starting two different ones today that are given IV. His blood cultures are still not growing anything so that is good!
Thursday ~ We are still here but things are looking up! He hasn't had any fevers spike since Yesterday am so that is good news! His counts haven't come up much though and they will have us stay one more night and see what the are in the morning, and so he can get more of the new antibiotics in him that must be working or it has just ran its course! You know this week-end is FISHING OPENER so we are all holding our breathe because Pat was going up to the Red Lantern on Friday night with a Joe and Jeff. So hopefully the Dr comes in sooner tomorrow then she did today at 3:30! Thanks for everyones Love and Support. Thanks for all the help with Amber Lynn! I feel like this week I have just left her on the street corner and hope that someone I know picks her up for the day! Well I better go!
Friday ~ Here we are! His counts still are not rising. But so far (by their record)neither his temps! I just checked it with my thermometer and it was 99.1 so hopefully that doesn't mean anything. They have stopped his antibiotics and are just watching to see what his temp does. She feels if they stay down and his counts come up just a hair tomorrow AM that we can go home!! Yeah! Dad still hasn't heard the news so I don't know what he will do, but hopefully he can go up tomorrow if things are looking up! Amber has been at Marceys and with Tiffany today and I am sure she is having a blast! Last I heard she was feeding Maggie her Tuna Fish sandwich! Thanks to Bette for bringing us (I mean Shane)some goodies!! He just finished playing the Wishing Well show and won a prize. This is an interactive TV show done through the Hosp and the kids get to call in and hear themselves talk on TV. They play different games with the kids and they can send a favorite stuffed animal to show on the program so today he sent Horsa which he won yesterday. We didn't bring much with this time because we weren't planning on staying this long! But that is the way it works. The other trips to the ER I came ready to stay the week and we were sent home. Well I better run Shane just called and said his stomach is hurting again. Maybe too many goodies from Auntie Bette!! I better have the rest! I will check in tomorrow unless there is other changes!
I will add to this entry when I know more. Thanks Jody
Sunday, April 10, 2005 11:29 PM CDT
Hello to all
It saddens me to tell you that Baby Alex went to be with Jesus last Friday morning. I am glad that he is no longer in pain. Please pray for his Mom, Rochelle and Dad, Daniel and 4 year old brother Isaiah as well as their family and friends to give them all strength. May they feel HIS presence during this difficult time and HIS love that HE has for them. May they feel some comfort knowing that Baby Alex is with our Savior. Pray for everyone's safety as they travel to Fertile for the service Monday Night and Funeral on Tuesday.
We just got home tonight from up north and I will be traveling back up there with Amber tomorrow and back home to the cities on Tuesday. I will update on Shane then, but he is doing well. Thanks for all your prayers!
Alex ~ until we meet again! Jody
Tuesday, March 29, 2005 9:17 PM CST
Good Evening!
Thanks to everyone that helped with Shane's Benefit in Fosston! What a great turn out! Thanks to everyone who helped in any way, thanks for all the donations for the silent auction, all the good food and fun. The music was also appreciated. I was so glad Shane was full of energy and enjoyed himself! We are so proud to be from our little towns up north because everyone sure has a big heart! Thanks for all the cards and gifts for Shane and all of us. He has enjoyed reading 'his' mail! God Bless You!
Shane has been feeling pretty good lately. His last appointment was March 23 for counts, which were good. His Hgb was good at 9.5, platelets 167,000 WBC 2,300 Neutrophils 50 hich makes his ANC 1150. So he will continue on the same oral chemo until he goes in next Wednesday for Chemo in the spine and IV Vincristine (chemo in his port). Then he will continue for one more month and then the hard Months again. But he is strong and brave! He is also upset with me, because he said I told him he went in to Short Stay tomorrow. Hopefully I can make it through until next week!
I am still waiting for someone to wake me. I feel like this is just another reality show or something and soon they will tell me Shane does not have Cancer and we can go on with our lives as we knew it before Cancer! But I also know this is not the case and we will continue on this journey until the end. God is Good!
Please continue to pray for baby Alex and his family. He is still sharing those beautiful smiles with his parents and brother Isaiah. He even smiled for me and it just melted my heart! It is so hard to believe that he is so sick, because when I saw him he was smiling and kicking his legs and pulling out his pacifier like others his age. They didn't expect him to make it through last week-end, but he did! Here we are 1 1/2 weeks later! Pray for comfort for his family and for him to be free of pain! We know Jesus is there holding his little hand!
We hope everyone had a great Easter! We did! It was a beautiful week-end. Grandma Lou Lou and Uncle Dave came down Saturday afternoon and we deep fried a turkey for supper. We have found that it is easier to enjoy ourselves Saturday then to rush through it on Sunday so they can get back up North. Saturday started out with me and the girls setting up at church for the easter breakfast on Sunday. They 'work' and the money they make is put in an account for them to use for Bible Camp and other church activities. This will help with the cost of camp for sure because Nicole's will cost over $300.00 for the week and Sam's is over $100.00 for 2 days. This is our first year sending them, but I believe it will definitely be good fun for them. All Nicole needed to hear was that they got to ride horses and she wanted to go! Nicole is now selling plants to earn money for camp.
Well I better get going before I lose my entry. Have a great week. It was 70 degrees here today! Love, the Killian's
Saturday, March 12, 2005 1:05 PM CST
Shane says HI to everyone and be sure to check out the new pictures!
Just a reminder that Fosston's Benefit is planned for Saturday at the Stadium and should be a great deal of fun. It starts at 5 pm and lasts til ?? They will have a silent auction, and close the bidding around 8 pm. They are raffling off 2 riffles so if you want to buy your chance call us and let us know. 1 ticket for $5.00 or 3 for $10.00. They also have a 4- wheeler and many other things to raffle off during the night.
Shane has been doing much better and has gone to School this week. It took quite a bit of coaxing and I left him in many tears, but he did stay! It was hard to see him so upset. After being home with Mom and Dad for 2 weeks it was a hard transition.
We went in for counts on Tuesday morning and had good results. They told us he was able to start his Interim Maintence #2 on Wednesday. Shane decided to keep his needle in his port for Wednesday morning which would save him a poke then. So we got up bright and early for a trip to Children's Short Stay. It was Nicole's turn to come with and give her brother her support for the morning. His Dad was planning to come, but he was able to help Richard with some work. Pat has been layed off now for 3 weeks and are hoping his company will have work for him on Monday. We didn't need this added stress right now, but things will work out some how. Shane and Nicole battled on the Nintendo for awhile and then we watched a movie called 'The Retrievers'. Shane had a Spinal tap with Chemo injected into his spine to keep the cancer cells from hiding out in the cerebral fluid which is only in the spine and brain. He also received IV Vincristine in his port as well as 1000 cc's of saline. They have given him more fluid to hopefully decrease his potential for headaches. And of course he reminded me that he should also have some Mountain Dew which can also help! He had his breakfast and ordered some for Nicole too! We got going and stopped for his usual at McDonald's then we picked up Amber from Heidi's (who has watched her many times for us and Amber just loves playing with her 2 girls, Anika and Sasha) Shane didn't eat anything because his stomach wasn't feeling well he said. So of course I think he is just playing me so he can stay home again! And of course he won! It is very unlike him to skip McDonald's so I thought we better play it safe so he came home with me and slept for 2 1/2 hours. Nicole had to go to school for the afternoon. I had a very quiet afternoon because Amber fell asleep at 11:30 and I had to wake her at 4:45!
Shane is on Oral steroids again twice a day for 5 days and 6 MP at bedtime for the month. He has to go in for counts in 2 weeks and Short Stay in 1 month. We are praying for an uneventful 2 months.
The rest of the week was uneventful from what I can remember! Except for now I am concerned about Shane's low temps. He had been running 97-98. But tonight before bed it was 96.2 so I called Children's and Dr Richards wasn't concerned since he is otherwise feeling fine. He is just freezing and is wearing a warm long sleeved shirt with a fleece sweatshirt on and wrapped in his fleece Hulk blanket.
Thanks to the Knightriders who are having a Poker Run today up North for Shane. I hope there is enough snow for them to ride. We hope they all had a great time!
Shane is extremely excited to see family he hasn't seen for awhile. Justin and Katarina will be here Thursday night and we are planning on going to the Hockey game. The kids aren't sure who to cheer for; UND or Minnesota!
If you read before I asked for prayers for Karla who also has cancer. She went to be with our Lord last week and we will continue to pray for her husband and 2 daughters. Also continue giving praise for each day Baby Alex is with us, he just celebrated his 5th month here on earth. He is giving his Mom and Dad many precious smiles that they are so Thankful for! He is such a beautiful little guy who is LOVED so much by so many!
Thanks to all of you! We couldn't get through this without your Love and support. Have a great Day! The Killian's
Monday, February 28, 2005 7:08 PM CST
Hi!
OK third time and you're O U T right? I have typed and retyped this entry and it keeps getting lost in cyber space!! I will try one more time tonight!
Shane started running low grade temps on Wednesday that never went above 99.9. I took Amber to her Dr. on Thursday to have her breathing checked. She really sounded bad with activity.He gave her some Prelone syrup which is a steroid and should help her breathing. But the trick was getting her to take it! I tried putting it in pop and other juices but she could always taste it. So it took a few hours for her to finish it all sometimes, so I hope it still worked. Pat took Nicole and Samantha up North for the week-end and I didn't feel comfortable going with Shane and his fevers. It sure is funny now how we look and 99.0 a temp now! But they only let him go to 101.5 before they want to see him. He continued to stay below 99.9 until Saturday after noon when he went to 100.3 and just continued to rise slowly all day. I finally called the Dr. at 9 pm when it got to 101.9 and she said to bring him to the ER. So I dropped off Amber at Sheila's at 11 pm because the Dr. didn't get back to me until 9:45 because she was so busy. So by time I finished packing 'just in case' to be prepared we were on our way. When we got to the ER we had to wait for a room. They had us sit in the ER on this couch until there was a room. Shane has to wear his mask until he is in a positive airflow room and they don't leave us in the waiting room with all the sick kids. So I am very glad that they are very cautious with him and his susceptibilty to infections. So we got our room and Jurassic Park movie for the long wait. His Hemoglobin dropped again to 5.6 Platelets 48,000
WBC 1,100 Neutrophils 4 which gave him an ANC of 44 which is his lowest so far. They did blood cultures and started him on IV Fortaz, which is an antibiotic that covers bacterial infections. They like to get this started right away just in case it is bacterial. And if it isn't it doesn't hurt. So at 2:15 am they came in and gave us the option to stay (if they could find a bed)or go home and come back in the morning. Of course Shane voted for staying the night, but since I am still driving I chose to go home and sleep. If we would have stayed he would not have got to sleep until after 4 am and by coming home he was sleeping in the truck by 2:30. I wasn't too sure about taking him home with his Hemoglobin so low but they are the Doctors. And since wasn't having any shortness of breath I guess it was OK.
The red cells (RBC's) contain and iron rich protein called Hemoglobin which picks up Oxygen in the lungs and carry it to the tissues throughout the body. A low Hgb is also called anemia. A normal Hgb in a child is 10 or above and anything less then 7 usually needs a transfusion. So here is the medical lessons for the day. He also has Thrombocytopenia (decrease platelet count) anything below 10,000 a platelet transfusion is done. He also has neutropenia (ANC below 200) All of this may sound scarey but it is to be expected with his Chemo. Enough of that.
The Dr. called me on Sunday morning and said if he was doing OK that we could wait until Monday morning and come in to Clinic. Still no shortness of breath, but if he did start complaining or his temps went >102.0 to bring him back before Monday. She also told me that we made the right choice on going home because they had no beds and if we chose to stay we might have had to go to Children's in St. Paul. Can you imagine us driving around St. Paul at 3 am?!! No thanks!
On Monday we got a babysitter so Pat could come with to see the rest of the place. We went to the Clinic first for counts and they were about the same. Hgb 5.4 Platelets 82,000 (better) WBC 900 Neutrophils 2 hich gave him an ANC of 18! Now that is his lowest! The transfusion went well and dad and Shane were battling on the Nintendo! His temp was 98. and it hasn't been this low since last Wed. So hopefully we are at the end of the fevers.
So our plans are to go in for counts next Monday with hopes to start his next phase on Wednesday! We will let you know what happens or if things change before then. Shane will have a break from Chemo until then.
We need you to pray for everyone going through cancer and their families. We ask the Good Lord to be with baby Alex (from Fertile) and his parents and Pat's brother Michael's friend Karla (from Thief River Falls) and her family. If you want to check out their websites they are www.caringbridge.org/mn/alexbauer and www.caringbridge.org/mn/karla. Both are very moving web sites so be sure to bring your Keenex's. Please pray for them to be painfree and comfortable and peace for the families and everyone involved! They are both great families!
Thanks and God Bless You and your families!! The Killian's
Wednesday, February 23, 2005 9:26 PM CST
Hi Everyone!
Where does the time go? I guess it is good for Shane that time flies! His transfusion went well last Thursday and he said he did feel better after getting the blood. The week-end was nice and uneventful for Shane and I. Pat took all the girl's to Red Lantern Resort Saturday morning for some fishing. Grandma Dottie met them there to lend a hand. On Saturday Shane played with his friend Jack while I hosted an all day scrapbooking workshop. I picked him up at 4:30 and brought him to the event so he could work on his friends/family album and so I could give him his last dose of IV chemo. We waited to take the needle out until we were at home because the tape that is holding the needle in place is quite large and it sticks very well! His skin is usually red and sore for a few days. We were both in bed (my bed) sleeping by 10 pm, we were both beat!
Shane sang in his Kid's of the Kingdom choir at church Sunday morning but didn't attend Sunday School because I wasn't sure his counts were good enough. We got some snow during the night so he called his friend Jordan to come over and ride snowmobile. It was fun having another boy around. They were so quiet while they were in the house I nearly forgot they were here! The quiet didn't last long though, because his Dad and sister's returned shortly after supper! Good thing I ordered 2 pizza's! They had a good time and once again Amber didn't fall in a hole.
We all went sledding on Monday because the kids were off School and Pat is layed off for a few weeks. We are praying it won't be any longer. It was a huge hill and needless to say I was only able to climb it 3 times! Amber wasn't too impressed either when we went down and she got snow in her face because we were trying to either slow the sled down or just keep it under control! She went with her Dad first and I thought I could do a better job and nearly rolled us down the hill. I was able to recover but she still ended up with a face full of snow!
On Tuesday Nicole came in to our room at ~1am complaining of stomach pain. I sent her to the bathroom and I fell asleep. I woke about an hour later and the bathroom light was still on so I figured she just forgot to turn it off when she went back to bed. I went in and she was curled up in front of the heat vent on the floor sleeping! So she stayed home with us and it never did get worse, she was just nauseated. Shane went in for counts and his was Hemoglobin 7.8 still low, but not needing another transfusion yet. Hopefully it can go up on its own. Platelets were low at 46,000 WBC 700 Neutrophils 19 hich made his ANC 133 (nearly 1/3 of what it was last week). He saw his primary MD, Dr. Sencer and she said he could go to school if we wanted. Of course he said NO and I wasn't too sure. So we will watch him for signs of infection and hopefully keep him out of the hospital.
Wednesday he did stay home from school but I wasn't too sure it was the right decision. Amber woke up in the middle of the night with a fever and this morning it was 102.9. So I didn't know if he should stay home with his sick sister or not. By 10 am I was on my way to school to pick up Samantha she had a low grade temp and right back pain which didn't turn in to anything. I was in the hospital when I was in 4th grade for a kidney infection so I hope that is not where she is headed.
As for Amber she saw the ENT last week and had an Audiogram (hearing test) which he said he would have liked to see it with a better reading, but I am not concerned with her hearing at this time. As for the swollen nodes in her neck he wasn't concerned they were anything to worry about, but with Shanes history he didn't want to say for sure. He gave her an antibiotic to take and said to see Shane's Oncologist. Which I am sure it was so she can make the call since she is the cancer doctor. She did come to Shane's appt on Tuesday and Dr. Sencer did feel the nodes in her neck and groin and said they didn't feel like they were anything to worry about. She said to keep an eye on them and check them in 3 months. So hopefully they are just related to this cold she has now. Since she spiked a fever on the antibiotic it is most likely viral. Her cough sounds awful but she isn't coughing all the time. She is raspy when she first wakes up and maybe we will have to take her in the steamy bathroom if she needs it tonight! Hopefully she won't have to be brought in to have her breathing checked. The antibiotic she is on (Omnicef) should cover sinus and ear infections and pneumonia. So this is good, but there is no Rx for RSV which many get at her age.
Well that's enough for tonight! Thanks for checking on Shane via his web site. I will try to get some new pictures on soon. Love, The Killian's
Wednesday, February 16, 2005 10:04 PM CST
Hi! We hope everyone had a Happy Valentines Day and spent it with your loved ones! We went to our favorite spot.... Old Country Buffet! Thought we better hit it again before Shane's counts drop too much and he is on house arrest again.
Shane did very well with the rest of his treatment and tolerated me doing the IV treatments with everyone watching. He was most worried about me taking the needle out on Saturday and that was the easiest part! He didn't even take a anti-nausea pill before his treatment on Saturday and did great. He did have another headache Sunday night and did vomit, but then he went to bed for the night and was fine on Monday morning. We went in for treatment Wednesday noon and again didn't give him his Zofran but this time we didn't get so lucky. We met our neighbor Marcey (who is working at Abbott) for lunch at McDonald's and Shane was eatting and all of a sudden he didn't feel well and I was glad we had a McDonald's bag for him! He only had the one episode of vomitting and I gave him his Zofran right then and a few minutes later he was eatting again and asking for more french fries! We won't push our luck tomorrow. His counts weren't as good as last week and we knew they would be dropping but I didn't expect his Hemoglobin to drop to 6.7! The doctor thought he looked pale but I didn't, he still had rosie cheeks. So as soon as I heard his results I ripped his socks off to look at his feet and hands and they still looked good. I remember the last time he needed a transfussion at 6.6 his hands and feet were so pasty looking. His WBC 800 Neutrophils 47% platelets 142,000. And I was surprised that his ANC was 384 with such a low WBC! We were lucky he had so many Neutrophils otherwise his ANC would have been near isolation again. We are going in to Short Stay Thursday afternoon for 1 unit packed red cells which will take ~4 hours or maybe more. We will be able to go home as long as he doesn't react to the blood. Shane will be playing X Box and hopefully he will let me lay next to him and take a nap. He doesn't seem weak or tired and has been as active as ever so I am so surprised of the results. I am wondering if they tested the right blood!
We will start Thursday morning off with a trip to the ENT (ear, nose and throat)for Amber to have her swollen lymph glands in her neck and groin checked. These have been swollen since September and we don't know why. She does have a slight cold again so that may be the reason, but I haven't had her checked when she has been well (other then in Sept. and that is when we found them) so we don't know if they go away or not. We did lab work on Monday which looked fine, but so did Shane's 1 month before he was diagnosed. So I hope they can reassure me without having to do a biopsy of the nodes. But then if that is the only way they can give me an answer I don't have much choice. Other then maybe go for a second opinion and be told the same thing! What are the odds? I feel fairly confident that this is nothing and will wait for tomorrow for some answers. (hopefully)
Otherwise things here have been pretty uneventful! Samantha came home from school on Tuesday with a slight temp but then was fine. The girls both auditioned for their first musical but neither one made it, maybe next time. They were nervous. Nicole is going sledding tomorrow for Girls Scouts and I hope there is still snow on the hill! I have been waiting by the phone for the 'nurse' to call and say she would love to help and I just realized why it hasn't rang. I forgot to include our phone number!! Ha Ha
Fosston's Benefit is still planned for March 19th at the Stadium. I still have to get the time line and will post it as soon as I know.
Thanks for everything! The Killian's
Thursday, February 10, 2005 10:46 PM CST
Hi there! We made it to our 7:30 appointment in Short Stay a little late but we got there. Samantha wanted to go with again and we dropped Amber off at a friends and traffic was bad because we got a few flakes of snow! And of course I had no washer fluid and there wasn't enough spray coming from other vehicles because we were going too slow! But we made it there safely. After we got settled in and ordered his breakfast Shane and Samantha were off to find the X- Box. They played for awhile and then Sam and I said goodnight to Shaner and left the room for a few minutes. While they gave Shane his Chemo in his spine I met with his nurse Rochelle to go over the new medications he would be taking. When he was starting to wake up we went in and Rochelle walked me through giving my first IV Chemo treatment in his Port. Like I said I have watched them everytime, but it sure is different having to do it myself on my Baby Boy. It doesn't cause him any pain so that makes it easier.
So if anyone knows of a competent nurse who is available and who also cleans and cooks please give her my number!
I will give Shane his IV Cytarabine (ARAC) daily with Saturday being the last day this week and I will do it again next Thurs, Fri and Saturday. He also started a new oral 6 TG (Thioguanine) that he has to take at night for 14 days. I asked the Pharmacist if it was OK for him to chew it and she said 'I wouldn't recommend it' but Shane does and says it doesn't taste bad. But I am sure everything tastes better to him compared to his steroid. They had me give him some Zofran (for nausea) yesterday before the treatment and said to continue this every 4-6 hours for a day or two. He didn't need another pill because he didn't even complain of nausea at all. I gave him one today before his treatment (and after the seven plus pizza rolls he ate) but he hasn't complained yet. It may be different after the med starts building up in his system, but for now he is doing great!! Sometimes I wonder if they aren't just giving him saline instead of Chemo drugs because he has felt so well. Now things will probably back fire on us now since I keep mentioning it, but I hope not!
I also had to replace the Tegaderm dressing, because it wasn't taped on very well yesterday in the Hosp. The Nurse probably didn't know it was going to have to be on 'til Saturday. Shane had gym today and played outside after school and was hot so the tape was letting go a little. He showed his class today what his port looked like now that he has to stay accessed with the needle for Chemo. He also showed them a diagram of where the port is placed and the tubing that goes in near his heart. I think that will help them better understand and also remind them to be extra careful not to hit him on that side.
They are expecting his counts to drop again but it will probably take ~10 days. They will have us go in for counts next Wednesday and to access him again, because this Saturday I get to take the needle out and remove it again next Saturday after treatment. He said I did a good job today!
Have a great week and I will write to you next week. Thanks for all your support and prayers. ~ Love Pat, Jody, Nicole, Samantha, Shane and Amber
Monday, February 7, 2005 9:47 PM CST
Hello!
Shane went to have labs checked today and was a very happy boy because he found out they have a Playstation at the Clinic too! I saw this last week but 'forgot' to tell him. He found this out because he went up to check out the Game Boy and they told him it was up on 8th floor charging, but they could see if he could be moved in to the room with the Play Station so of course he waited patiently for the move to happen. All he had to do was see Dr. Perkins first and then he could be moved. So the time really flew by it didn't take as long as usual to get labs back. We got good news and he can start his next phase of treatment so of course he is excited because that means X-Box for Shane and early morning for Mom on Wednesday! Counts- Hgb 10.1 Platelets 351,000 WBC 4600 Neutrophils 52% which makes his ANC 2392. I was concerned that his counts may not be high enough but he fooled me! He needed his Platelets >100,000 and ANC >1000.
Shane will get a few new meds starting on Wednesday which may cause nausea which he hasn't had much of at all. The ARA C is the one they think may have caused the couple episodes of vomitting in the Hosp. If this does happen hopefully his Zofran will take care of it. He will have his usual spinal tap with the Methotrexate. He will get Cyclophosphamide (CPM) and Cytarabine (ARA C) IV through his Port. He also needs to take Thioguanine (TG) orally for 14 days. The CPM is a one time dose this step of the phase but the ARA C will have to be give for another 3 days at home via his Port. They said we could possibly have Home Care come and do this or else they will train us. I am not too sure I want to take the responsibility if something does go wrong. The line goes in near his heart and if he got an infection or blood clot because his line wasn't cleaned or flushed correctly would be too much. But then on the other hand I have seen them do it many time since September and they would have it all layed out for us. So we will pray for guidance to help with our decision as to what would be best for everyone.
Fosston has had the raffle tickets printed up and will be sending me some to hand out to anyone interested in selling some. There are 2 guns being raffled. They are also taking Silent Auction items. Just call me and let me know if you are interested. The Benefit is still planned for March 19th.
I will update again after his treatment on Wednesday and let you know how he is doing. He has been so tough through all of this so he may just get thru this with no problems at all. His counts will drop again probably before the 4 weeks are up. Of course Amber Lynn just started with a runny nose again. But it is still clear and no temps.
Thanks for all your Prayers and Support!!!
Love, Pat, Jody, Nicole, Samantha, Shane and Amber
Tuesday, February 1, 2005 11:03 PM CST
Happy Ground Hog's Day!!
We are still at home fighting the fevers and I thought we were done with them this am because it was normal when he woke up. I brought him in to Children's Clinic for counts this morning and he didn't have a fever there either. His counts are lower then they were last week so he can not start his new treatment tomorrow, we will recheck labs on Monday afternoon with hopes to start treatment on Wednesday am. Which this is in Short Stay and Shane is waiting for the day to come so he can play their X-Box games. I am so glad I don't have to fight him for any of these appointments. But I don't like fighting him when it is time to go home either. His counts today were Hemoglobin 10.9 Platelets 222,000 WBC 3500 ANC 350 Neutrophils 7%. In order to start the next phase of treatment his ANC has to be >1000 and platelets >100,000. So we are waiting on the ANC and that is a calculation of the WBC and Neutrophils. His WBC was good, but his Neutrophil count was low most likely due to his fevers and cold symptoms. Dr. Bendel couldn't find a source for the fevers and she wasn't too worried because the temps aren't staying consistently high, so Shane wasn't started on an antibiotic. We are to continue to monitor these and if they spike again to go in otherwise let them know on Friday if he continues to have them.
Shane has a lot of home work to do and I am planning on him going to school tomorrow. Once again he isn't to fond of the idea! He had a good nap today and was in bed by 7:30 tonight too! He is tired from playing out in the snow last night. They had Amber on the little snowmobile and also were pulling her behind on a sled. I asked if she was having fun and they said 'yes' I asked how they new that and they said 'she's not crying.'
Will be praying for Shanes counts to get better so he can continue with treatment next week. I don't want to have too many delays in his treatment. I will be going away this week-end for a Scrapbooking retreat as long as Shane continues to improve, so Pat may need a few extra prayers for patience! Thanks!
I wish all of you a great week! God Bless!
Love, The Killian's
Monday, January 31, 2005 9:27 AM CST
We hope everyone had a great January! Where did the month go? Shane did stay home from school last week until Wednesday. Pat was off on Tuesday so he came with us to the Clinic for counts to see what Shane did when he was there. It was nice to have someone else with for a change so I could go and check on a few other Children in the Hospital that I have been following. They are both from up North, not far from Erskine. Alex is 3 months old from Fertile/Maple Bay area with a tumor on his kidney and also spots on his brain and lung. I went to see if I could find his Mom Rochelle to talk to and introduce myself. She wasn't available, so I went on to see Allegra, she is a 5 year old girl from Gary. She had just moved out of intensive care up to 8th floor where Shane had been so I went up there to find them and saw Allegra, but her Mom Denise was still in the process of moving everything to her new room. So I decided to try back another time. Please keep both of them in your prayers. Allegra did go home and Alex is still staying strong and will be in the Hosp for some time. His condition is very fragile and he wasn't suppose to make it through the night on Jan. 21st but surprised them all and is still continues to fight. Go Alex!
Shane's counts were better his Hgb was 12.2
Platelets 291,000
WBC 1,900
Neutrophils 27%
ANC 513
So he had the OK to go to school as long as he washes his hands well. And his class is healthy at the time so I let him go. Maybe his class is continuing to wash their hands well and keeping themselves healthier too! This Fall he was going to school with his counts close to these, but then there wasn't so much illness going around so it was easier to send him. Now I am not as sure if School is the place to be! He wasn't so sure on Wednesday morning either. Many tears were shed and it is hard to tell if he is in that much pain or if he has just gotten use to our time together too.
He has started to slow down again and is having a lot of body aches which is from his IV Vincristine that he received 3 weeks in a row. He has to hang on to the rail or have help going up the stairs again and takes them one step at a time. So this is hard to see again because he has been so active and we could almost forget he had cancer! But now the reality of the physical symptoms again. But He will overcome this too, he is so strong. We have been doing Physical therapy on his feet and legs to keep his muscles stretched out for this time when he is less active. His hair was looking so good but I could tell the texture was changing which meant it was going to come out again. I gave him a kiss on the head last week and noticed then it was falling out. It won't be as traumatic for any of this this second time, but it is still hard to see.
He has started to run some fevers again since Saturday. Sunday they were getting higher and last night they went as high as 101.8 at ~3am. I did not call the Doctor I just waited to see if it came down on its own and prayed I made the right decision. This am it was 100.8 and I called the Clinic and they said to continue to watch it and if it does go above 101.5 to come in. He is due for counts tomorrow and they may do another Blood Culture if they continue. So he will stay home from School today for sure and we will see what tomorrow will bring. We are praying that he can fight this on his own without Hospitalization. Thank-You for all your Prayers and Support!
Love Pat, Jody, Nicole, Samantha, Shane and Amber
Saturday, January 22, 2005 10:04 PM CST
Happy New Year!! I am so sorry for the long delay in updating once again. Things have been good here.
I want to start by saying "Thank You, Thank You, Thank You!!" to everyone for your thoughts and prayers and for braving the weather to attend one or both of our Benefits! Words can't express how Thankful we are for everyones support! The Benefits were unbelieveable! The Erskine Fire Department, Garden Valley employees and friends did an awesome job. Sue Kronschnabel made Shane a Big Birthday Cake and it nearly had a life size Power Ranger on it!! Thank you! Thanks to all for the great decorations it is going to be hard for me to top this party next year! I may need your help! Erskine served more than 300! That's a lot of meatballs! It was nice to talk to so many of you. Many relatives from both sides of our family came and it was so nice to see them again. I am so proud to be from such a great little town with so many caring and giving people. We will never forget what you have done for our family starting with August 29th when Shane first went in to the Hospital. Thank You. Shane was doing well but it was quite warm in there and by the end of the night he was getting pretty run down and needed to sit and be held. Which I love doing anyways! He had fun playing with many cousins he doesn't see that often.
The Benefit in Rogers was awesome! It was the coldest weather we had in a long time but that didn't keep anyone away! Grandma Lorna and Uncle Dave drove down Saturday to be with us. I made some picture boards of Shane to have on display so everyone could enjoy. They started serving Pasta with red sauce, bread, desserts and beverages at 5 pm. We had a line down the hall all night long! It was unbelieveable! They had only planned for 200 and by the time it was over Spagghetti's Ready had served 525 plates!! The had to go back to the restaurant 2 times for more food! We also needed more coffee and desserts which came from Paula at 'House of Beans'. Thanks to everyone for their hard work! We had a great time visiting with family and friends. Some of Pat's softball buddies from his Crystal softball team were there and totally caught us by surprise. It was so good to see them again. Thanks guys! Shane did well the whole night. I didn't see much of him, he was busy running and playing with friends.Thanks to everyone who kept there eye on Amber for us. The balloons did help keep track of her. Thanks to all who donated to the silent auction. We had over 85 items! We had a Vikings helmet that was signed by the players along with pictures of them signing it. This was a hot item and many wanted it, with the playoff game against the Eagles the next day! I haven't heard if the new owner wants a refund since we did end up losing the game! Well hopefully next year! I met a lady from Rogers who ran in a Leukemia and Lymphoma Marathon in Arizona. Her Mom also has cancer and she said it was amazing to see all those runners there for the same reason. I am so glad she came to talk to me. We still can't believe all the people and we are still talking about how wonderful it was to see everyone there! We can still feel your love and support. Thanks for your generousity.
Thanks to everyone for everything you have done for our family since Shane first went in to the Hospital on August 29th. Thanks for all the cards, donations and gifts for Shane and his Sisters. Thanks for the many bags of groceries and prepared meals. We are blessed and Thank God for bringing each of you into our lives. May God Bless You!
Our trip to Colorado was a lot of fun. The drive went well and the kids loved staying in the Hotels. Nicole and Samantha even had their own room one night so that was the coolest! I didn't sleep well that night even though our rooms were ajoining. Mount Rushmore and Crazy Horse was fun to see. Only a few other people so it was nice not to fight the crowds. Thanks to Mike and Janelle for a great week. Pat went with Mike on Monday to the East side of Colorado and on Tuesday went to the west side so he saw a lot of land. Shane vomitted a few times in the morning Mon-Wed but then was better. He did have a headache too so I don't know if it was the altitude or what it was. On Wed. we went to Loveland pass and took in the sights and then went to swim at the Community Center. Thursday Pat and Mike went snowmobling and we played in the snow and found some sleds and went sledding down the road. It was not developed yet so there were no cars. Friday was New Years Eve and we all loaded up and went snowmobiling. That was a great time. We pulled the sled behind for the kids and Amber an Kincaid rode on the snowmobile with us. I was glad Shanes platelets were good because he took a few tumbles with the help of his Dad and grandma Dottie. Then we went back to their place and deep fried a turkey and had all the fixins! We did stay up to see the New Year but only for a few minutes and then hit the bed. Started for home around noon on Saturday and spent the night in Lincoln, Nebraska. Then on to Minnesota and got home about 5 pm. We saw some beautiful country.
Shane did start his Delayed intensification the first Wednesday of the year and has been doing fairly well. We have given him his Zofran to keep the nausea under control. His counts have been so good until 1/19. Last week Platelets were 413,000 now 181,000. WBC was 4,300 now it's 1,700. Hemoglobin was 12.1 and now 11.5 so that is still good. His ANC was 2795 and now 136. They did give him IV Rocephin (antibiotic) on Wednesday because he had some fevers since Monday. We were going to leave for Fargo on Monday for my Great Aunt Myrtle Knutson's funeral and Shane said he felt hot, so I checked his temp and it was 99.5 and later on 100.5 which normally wouldn't concern me before but now if it gets to 101.5 I am suppose to call his doctor and he may need to be seen. I called and talked to the nurse who had asked Dr. Nelson (the first Dr. who met us at Childrens that first day) if I was crazy for thinking of going and he said go ahead and he would see us Wednesday for treatment. Well that night it went up to 101.7 and we said our prayers together and went to sleep. OK so Shane went to sleep and I kept my hand on his forehead! It never did get that high again and was under 100 on Tuesday. When we saw Dr. Nelson on Wednesday he told me he didn't think I was crazy for going to Fargo when Shane had a fever, but did think I was crazy for going with 5 kids by myself!! (I had the girls friend Erin with also.) We really like Shane's Doctors and Nurses! They fight over him when his nurse is gone. I kept him home from school the rest of the week since his counts were so low I didn't want to chance him getting exposed to more. He will stay home on Monday and go in Tuesday for labs to see if they are up enough for him to go to class. He does have 2 mouth sores from his Chemo which we noticed on Thursday night. They were about twice the Size of 'O' but they seem to be improving. He is rinsing his mouth with a baking soda/salt water mix. His appetite is down some but he says the sores aren't really hurting him. He is taking his steroids this week again otherwise he doesn't have many oral meds to take so I feel like I am forgetting to give him his meds. We have had some good naps this week and it has been good for all of us!!
We finally got some snow on Friday so they have been riding the snowmobile and playing in the snow. Shane went fishing today and he caught the first fish! Samantha had a Northern but it got tangle in all 4 lines! So that kept Dad busy for awhile. Nicole went on a Girl Scout overnight tonight. They are selling girls scout Cookies again so if you don't have someone to get them from call or e-mail us. Pat went snowmobiling and hopefully him and the sled will return in one piece.
God Bless!
Love Pat, Jody, Nicole, Samantha, Shane and Amber
Friday, January 7, 2005 11:00 AM CST
Benefit Information for Erskine and Rogers:
On August 29, 2004, Shane Killian (who was 6 1/2 at the time) was diagnosed with Acute Lymphoblastic Leukemia (ALL) which is a cancer of the white blood cells, the cells in the body that normally fight infections. In ALL, the abnormal cells may collect in the brain or spinal cord, also called the central nervous system (CNS). Shane is receiving chemotherapy treatments through Minneapolis Children’s Hospital. Treatment for leukemia in boys is 3 years and 2 months. Shane is the son of Pat and Jody Killian and the brother of Nicole, Samantha and Amber Killian of Rogers and the grandson of Lorna Nelson of Erskine and Dorothy Killian of Fosston.
When: January 8, 2005 - Saturday
Time: 4:00-7:30 – Meatball Dinner
Where: Erskine Community Center
105 Ross Avenue, Erskine
Cost: Freewill Offering for Medical Expenses
Thrivent Financial will match funds
Thank you to Erskine Fire Department and Garden Valley Employees and friends who have graciously put together this benefit.
When: January 15, 2005 - Saturday
Time: 5:00-7:00 – Pasta Dinner
Where: Rogers Community Center
21201 Memorial Drive, Rogers – next to fire station
Cost: $6.00/Adult and $4.00/6-12 years
Tickets available at Word of Peace or at the door.
Thank you to the Word of Peace Social Ministry Team, Pastors, and friends who have graciously put together this benefit.
For those of you who would like to contribute but are unable to make it, send checks payable to:
Word of Peace
21705 129th Avenue North
Rogers, MN 55374
Write "Shane Killian Benefit" in the memo portion of the check. Thank you to everyone's gracious generousity. Your help is truly honored and cherished. We cannot express enough gratitude for your thoughts, words, and deeds.
God's Blessings to you all. The Killian Family
Friday, December 24, 2004 0:39 AM CST
Merry Christmas and Happy New Year!! A HUGE Thank-You to Word of Peace, Otsego Elementary staff, Mom's in Touch prayer group, Rogers Boy Scouts and everyone who helped make this Christmas extra special for Shane and our family.
We have had a good week! Shane went in for blood counts on Wednesday and they were good. His hemoglobin 12.2 Platelets 350,000 WBC 2500 Anc 1300. I am glad to see his ANC up because then maybe he has been able to fight off all those germs he is getting from Ambers wet kisses! He took his weekly Methotrexate last night, so we just have one more week of that and then the following week he will start a new phase of treatment. He may get nauseated with these meds so they tell me to give him the Zofran that we already have to help keep this at a minimum. Before he went to bed tonight he did have to blow his nose a few times and when he was in bed I did hear him cough too. So I will pray it doesn't turn in to something more. Especially now when we will be gone. I do have the number for Childrens in Denver if we would need them and they would call his Doctor to find out what they should do.
We hope everyone enjoys their Holiday with family and friends and remember the reason for the season! Shane has said many times these past few weeks that "it is better to give then to receive' and he is so right! He gives us joy and strength each and every day. There are many days when he has more energy then I do! His hair is growing fast and is coming in dark again. He looks so different with dark hair,I was getting used to his light color again just like when he was One. I will try to get some new pictures on after Christmas!
Have a Great Holiday! Love Pat, Jody, Nicole, Samantha, Shane and Amber
Monday, December 20, 2004 9:32 AM CST
Greetings!
With all that we have to get done this time of year it is no wonder the times flys. We have had a good week. Shane continued with the headaches all week-end but did make it to Casey's Party so that was a good thing. I called the on-call Doctor on Sunday to ask if I could give him Advil. He said it would be fine only when needed because his platelet count was over 300,000 the last time. That did help him a lot. He did come home from school Monday before lunch with the headache again so I called Childrens and they thought it may be a bug that he has or related to his treatment the Wednesday prior. They will give hime extra fluids in his IV during the procedure next time. Hopefully this will help. I do remember when we first started going in to Short Stay they did run a whole bag in but haven't for awhile now so maybe that is the cause.
Tuesday he was fine but then I don't know if he would tell me because he was going to see Polar Express with his class and didn't want to miss it! The whole school saw it. Samantha went on Monday and Nicole on Tuesday and had a good time.
The rest of the week flew by. Nicole had a BDay party sleepover to go to on Friday and Shane had another Bday party on Saturday. Pat worked on the brakes on the truck and I did some baking. Amber continues to have a cold. Friday am her eye was getting pink but then it cleared up before supper. But then Saturday night both her eyes were getting red and stringy discharge. Of course this happened while Andy and Tiffany were watching them so we could go out to eat and spend sometime away, alone. Thank you!! Sunday am she couldn't open the one, but they are better again. I will take her in before we go if she doesn't show improvement in her cold symptoms. I don't like waiting it out like we usually do now with Shane, but his counts were good enough that I am hoping he is able to fight it off. I don't want Amber to be on something everytime she gets a cold either because she could be on something all winter. It will be different in his next phase of treatment when his counts are down.
Shane will go in for counts only on Wednesday because we are planning a trip out to Breckenbridge,Colorado this week-end to see Pat's brother Michael, Janel and Kincaid who is 1 month older than Amber. There is a Children's in Denver if we need anything. We hope to leave Friday am and drive to Sioux Falls for the night and then on to Rapid City and take in the sights. The kids are really excited and so are we. Grandma Dottie may drive with if she doesn't fly instead. I told her I would take her ticket and she could drive! Of course my main concern is what are we going to eat!! Not sure what our Christmas dinner will consist of but we will enjoy our Holiday! I am sure the kids would be just fine with chips, candy and Easy Mac (if we can find a microwave). Amber may need more then that so we will pack some of her favorites. We were planning to go out there this summer but never got there. The week we were planning on going Pat couldn't get off, but it was a blessing in disquise because that is when Shane ended up in the Hospital. Everything works out for a reason and at the time we did not know what the reason was but God did! And we are Thankful that he kept us home!
I will let you know more after his counts on Wednesday.
Erskine is having Shane's Benefit on Saturday January 8th at the Community Center. They will be serving a meatball supper with all the fixins from 4:30-7pm.
Word of Peace is planning Shane's Benefit on January 15th at the Rogers Community Center from 5-7pm. This is open to the public and they will have a Pasta dinner being prepared by Spaghetti's Ready. There will be a silent auction if anyone wishes to donate items. You can call our house 763-428-8996 or I will get a contact name and number for you and will post it on Shane's website.
The benefit in Fosston is still planned at the Stadium for March 19th with food and a silent auction also.
Thanks to everyone for all their hard work and we wish you a Blessed Holiday season.
Love, Pat, Jody, Nicole, Samantha, Shane and Amber
Saturday, December 11, 2004 11:22 PM CST
Merry Christmas to All!! A great BIG THANKS to EVERYONE for your prayers, phone calls offering support and encouragement and your love for Shane and our family. We want to wish everyone a very Merry Christmas and a Happy and Healthy New Year.
Wednesday Shane went in bright and early to Short Stay for sedation and underwent IV Chemo, spinal chemo and a bone marrow aspiration. He is such a brave little man and we are amazed by his strength and courage and keeps us going strong also. They were done by 8:30 and I woke him about 9 so my king could eat his breakfast in bed and we could get going. He is seeming to sleep longer than he use to after being sedated, but they tell me not to worry. (Yeah right!) Well Shane had other plans after breakfast because he learned that morning when we got there they had a X-Box and Play Station he could play in his room. So needless to say we stuck around until about 10 am and played games. He was playing Spiderman and was getting very good at swinging by his webs. So he is waiting until next time so he can play again. He met a girl Portia who also has leukemia and lives in Elk River. I had a nice visit with her mom Merri. So we finally were able to leave and stopped by Mcdonald's for lunch before he went to school. I stayed at the school and helped Nicole's class make Ginger Bread homes. It has been awhile since I have done that. I still remembering making mine in grade school! I picked the kids up after school so Shane didn't have to take the 30-35 minute bus ride home after being up at 6am for treatment. We went to see Santa and Amber even sat on his lap without crying. So we were able to get some good pictures (I hope) before she wanted off and then she sat with Mrs. Claus in the rocking chair and just watched. We still remember like it was yesterday when we took Nicole to see Santa her first time. She was about the same age as Amber, but she was terrified of him and her loving, caring parents just threw her at Santa and stepped back so we could get pictures!! I can still see the look on her face. So Santa is always very good to her now! Shane started to read Santa a story and they should make some really good pictures for the scrapbook.
Shane has to take his steroids and Zantac for 5 days and his weekly Methotrexate. Also taking oral chemo every night before bed, but it has to be on a empty stomach so sometimes I have to wake him to take his pills if he has had a late snack. We got his bone marrow report back on Friday and it is great news his blast count is .4 nd that is what is was at 2 weeks into treatment so he is still responding like they want him to. His Hemoglobin is still good at 12.8 and his ANC is 1265 (this shows his bodies ability to fight off infection so we like this number high.If it drops to 54 like the last time he was in the hospital that is when we really have to watch him closely) I picked them up Friday after school so Nicole and Sam could go up to Fosston with their Dad to hunt one last time. Shane was in tears and complained his head hurt and when we got outside he started vomitting. He had no other episodes of vomitting, but has had Tylenol for his headaches. He is mentioning headaches more frequently now so I am not sure what that means. His Liver tests were slightly elevated also and they will be watching those.
They gave me his roadmap for the next phase of treatment that starts the first week in January and there are a lot of new drugs that can really lower his counts and they tell me that it is possible that he could go back in the hospital at some point during this phase. We will deal with that when and if it is needed.
Amber has another cold so we are trying to keep her away but he enjoys playing with her so much and forgets that he shouldn't touch her or anything that she has touched.
Shane has another BDay party to go to on Sunday and is looking forward to it. After he gets home we will go to his cousin's Tristan's 2nd BDay party.
Our wonderful Word of Peace family is planning a Benefit for Shane on January 15th at Roger's Community Center. They will have a Pasta dish from Spaghetti's Ready and I think they will be selling tickets for this at Church. Thanks to everyone!
Have a wonderful week. Love Jody, Pat and family
Monday, November 29, 2004 10:44 AM CST
Shane's appt last Wednesday went well. He wasn't due for IV Chemo only lab work. His counts were down a little but he is still able to continue on the same dose of oral Chemo at home. We will recheck in 2 weeks and at that time he will go to Short Stay and have a bone marrow done under sedation and IV Vincristine in his port.So we will pray for good results and find out then if his marrow is still free of the bad cells.
I hope everyone had a great Thanksgiving! We spent it at Grandma Dottie's and had lots of good food and fun. Amber had a blast playing with all of Grandmas fine breakables! I hope they all survived! The kids enjoyed playing outside in the leaves and the new falling snow. They also explored the woods and found a spot to build a fort. Good thing we brought snow boots for them to wear. On Saturday they got together with their cousin Skylar and Uncle Dave and decorated Grandma Lou Lou's X-mas tree. Now she is already for Santa.
Pat spent the week-end Black Powder hunting but came home with nothing. He had a few mishaps in the woods with his gun and missed his chance. There is always next year!
Erskine is planning a Benefit supper for Shane on January 8th at the Community Center and Fosston has scheduled for March 19th with a silent auction and more at the Stadium in Fosston. Thanks to everyone!
Have a Great Week!
Thursday, November 18, 2004 9:28 AM CST
Greetings to All!!
Sorry about the delay in Shane's updates, but I thought I would do them myself and just haven't been able to sit long enough to think! I promise to do a better job! Jody
Wednesday, November 3, Shane went in to the Short Stay unit for Chemo treatment to his spine. He is such a trooper! We have to be out of the house around 6 am (which is more of a challenge for me then anyone!)Before we leave we have to put numbing cream over his port in his chest so it is numb when we get there so they can access him to do labs and hook up his IV for fluids. Then we wait and watch TV until about 9am and then they put him to sleep for the procedure which only takes 5-10 minutes. Then I can go back in and wait for him to wake. He gets breakfast and then we are done and usually on the road by 10:30 and of course we have to stop and eat again before he is off to School. We increased his oral Chemo-Mercaptopurine(6MP)to a whole pill at night. I am concerned because he didn't start this med on time due to his counts being too low and now he hasn't had the full dose recommended. His Dr. and the Nurses are reassuring. I have been fighting a cold and thankfully Shane hasn't got it. His counts are up and his body is doing a good job fighting it off. Appt next Wed. in the Oncology Clinic for Labs.
Wednesday, November 10, We have had a good week. The girls sang in the kids choir in Church for 2 services and sounded great. Nicole had her cast off yesterday, but was a bit reluctant about someone taking a "saw' to her arm. She is doing well and isn't having any pain.
Shane went in to the Clinic today for lab work only. His counts are very good so he his able to start his 3rd Phase of treatment which they call Interim Maintenance and lasts for 2 months. It is a less intense treatment period which is a recovery for his body. They are trying to trick any leukemia cells that may be left in his body to come out of hiding during this phase and then hit them hard with the next round which will be Delayed Intensification (this will be like his first month of treatment but harder.)The Delayed Intensification is for 2 months also and then he repeats the Interim and Delayed one last time before he moves on to regular mainenance program. So have I lost anyone yet? They give me a roadmap to follow so it is all down on paper. So for the next 2 months Shane's Chemo will consist of Vincristine in his port once a month. This makes his bones ache and we have started to see that already. Oral Methotrexate taking 8 pills once a week. This is what they gave him in his spine. 6 MP 1 1/2 pills at night. And Dexamethasone twice a day X 5 days a month. This is the Steroid that makes him very hungry and can cause mood swings. (I feel it is just preparing us for the girls)He also takes Zantac twice a day while on the steroid to protect his stomach from any ulcers. Appt. on Nov. 24 in the Clinic for counts.
Shane has done well so far and we are starting to see some new hair growth which we are excited about. He still has some blond hair left. He has choose not to were a hat during this and I am very proud of his decision. We were getting ready for school today and I asked if he wanted to wear a hat and he said they were for when he was bald. He has kept a great attitude through everything and it is nice to see him smile and play with his sisters and friends again. His class has been great and he was invited to a girls B-Day party and even has other girls calling him at home. Amber was sick with a cold last week, but he has able to avoid this one too so far.
Thank you for all your prayers and support during this trying time. Thanks for all the groceries, meals, and the many gifts for Shane and the family. Thanks for helping with Amber on those days we are at the Hospital.
We are truly blessed and may God Bless You!!
Friday, October 29, 2004 11:29 AM CDT
Happy Halloween Everyone!
Shane did awesome this week. He was able to receive his chemo and is still continuing to take a 1/2 dose of his chemo everyday in the form of a pill. His counts were up this week which is good.
Shane has a lot of energy. He acts just as he did before the diagnosis and has that glint of boy mischief in his eye...that's the Shane I know. The only thing that is physically different is his hair loss. However, it seems that some new growth is happening, so that's good news.
Pat did shoot a deer with an arrow, but the deer got away. So if any of you hunters get a deer this fall and it has a broken arrow in it...the deer belongs to Pat. One thing Pat did get while in the wilderness was deer ticks. Yes, 3 of them made an "impression" on him. To ward off the possibility of Lymes disease, Pat took medication which consisted of 2 pills. He is feeling well, so I'm glad he took the medication.
HAPPY FIRST BIRTHDAY AMBER! October 30 is Amber's first birthday. She is walking now and even tries to run. She is a busy girl trying to keep up with her siblings.
Have a great weekend everyone. Don't eat too many treats.
Wednesday, October 20, 2004 3:55 PM CDT
Here's the latest:
Shane was able to receive chemo treatment at the hospital today. He did start a pill form of chemo last week and since his counts were low today, the doctors decided to cut his pill form of chemo in half. Otherwise, he's doing great. His new regimen will be on Wednesdays this month.
Grandma Dorothy has made it back safely from her trip to Europe and said that Innsbruck, Austria was grand...she could even live there. However, Shane and the family are very glad she is back in Minnesota.
All the girls: Nicole, Samantha, and Amber, have been sick with a stomach virus and/or cold. It sounds like all of them are finally on the mend too. Nicole's blue cast is stunning. I think she has it on for at least 4 more weeks.
The whole Killian clan is headed up north today for a long weekend as the kids don't have school due to teacher workshops. Pray for safe travel and I believe Pat is going hunting too. Maybe he's going to get that "wraskly wrabbit" ?
Friday, October 15, 2004 7:41 AM CDT
I'm sure you're all wondering about Shane and what's going on. After his return from the hospital a couple weeks ago, he has been attending school. He has had to go to the clinic to get his blood drawn to check his counts. Unfortunately, the counts are not where the hospital wants them to be to resume treatment. We hope that treatment will resume next week. However, due to the lack of treatment, Shane has been able to be foot loose and fancy free so to speak. He has energy, is running around, has a glint of mischief in his eyes, and is smiling...all are welcomed treats to the family.
Some things Shane experienced this past week are: receiving his first Bible from church Sunday, October 10. Jody says that he is reading it every day...what a lesson to us all. Shane also went on a field trip with his class this past Wednesday to the Kelly Farm which is a historical farm. They do everything by hand like they did in the olden days. It resembles Little House on the Prairie somewhat as the house is a mansion for that time frame. The kids get to help weed the garden or pick the vegetables, wash clothes using a wash board and ring them to dry, feed the animals. It is a very educational experience and his whole class enjoyed the trip. Jody went too and also enjoyed experiencing history with the class. Since it was rainy here that morning, all the kids came home with muddy new school shoes which Jody was sure all parents were appreciating. (smile)
Have a wonderful weekend everyone. As soon as Shane resumes treatment, an update will be posted.
Thursday, October 7, 2004 4:42 PM CDT
Another update brought to you by a family friend.
Monday, October 4, Shane stayed home because he still had a low temperature.
Tuesday, October 5, Shane's bloodwork was done again to see when treatments could resume. He met up with his friends Nathan, Jake, and Aaron at Subway for dinner and ran around with them. Shane loved spending time with his friends and was glad he was feeling better so he could play.
Wednesday, October 6, Shane was feeling so good today he went to school the entire day and still had energy to spare. Jody said it was good to see Shane smile again...it seems so long since he's shown everyone that great smile.
Thursday, October 7, Jody is still waiting to hear when the chemo will resume. Shane had another full day at school and is glad to be back in the swing of things.
BENEFIT CHANGE: Due to circumstances beyond our control, the Fosston benefit will be moved to March/April 2005. Sorry to anyone making plans on attending. As we know further information, we will let you all know.
Sunday, October 3, 2004 1:45 PM CDT
Brought to you by a family friend.
GOOD NEWS! Shane is able to leave the hospital today. Because his counts were low on Friday, Shane did get a transfusion Friday night. As of Sunday, October 3, Shane's counts are up, but not high enough for treatments. On Tuesday, Shane will go to the local clinic and have his counts read. Depending on where they're at, he will start treatment again later in the week.
Just so you know, Shane did receive a flu shot last Tuesday, September 28, and will receive a second one in October. This will lesson his chance of contracting the flu this winter.
BENEFIT INFO: A benefit is scheduled in Fosston, Minnesota, on Saturday, November 6. More details are forthcoming. If you think you may attend, reserve a hotel room at Shooting Star Casino in Mahnomen. http://shootingstar.casinocity.com/ The first weekend is deer hunting for the area and lots of local hotels are booked.
Check back on Wednesday for further updates.
Friday, October 1, 2004 12:45 AM CDT
Updated by a family friend Friday, October 1, 2004.
Sunday, September 26: Today was the last day Shane had to take his steroids. He has been on them for a month. Hopefully, the swelling will go down in the next couple of weeks and his cheeks and tummy will not be so swollen from the medicine. Eventually his therapy treatments will call for the steroids again, but only for a week at a time.
Shane took a bath tonight and when he got out of the tub he saw how much hair was floating in the water. This was one of the things he hoped wouldn’t happen to him. But, it looks like the medicine has taken its toll and is causing the hair loss.
Monday, September 27: Shane wasn’t feeling quite right, so he stayed home and rested in between eating his routine meals/snacks every 2 hours.
Tuesday, September 28: Shane received chemo through his port. His counts were too low for him to start a new medication he would swallow in the evening. On Thursday he is supposed to go to the clinic to get his counts checked to see if this new medicine could be started on Friday.
Wednesday, September 29: It’s been a month since diagnosis. Shane wasn’t feeling quite well so he stayed home with a family friend as Jody had an important engagement with a friend. Near the end of the day, the school called and informed the family friend that Nicole had possibly/probably broken her wrist. So everyone whisked off to get Nicole and take her to the clinic. Jody was waiting and the x-rays did prove that Nicole had in fact broken her left wrist. Thank goodness she is right-handed. Nicole stated she would like a light blue cast. Once the swelling goes down in her arm they will cast it…probably Friday.
Jody returned home from the clinic with Nicole and had dinner and noticed that Shane had a temperature of 102.4. She called the doctors as they need to inform the doctors of anything out of the norm which at this point is just about everything. The doctor told Jody to bring Shane to Children’s in Minneapolis for further diagnosis. Even though they arrived at the hospital around 7:30 pm, Shane didn’t get a room until 2:00 am. The hospital did a blood culture to see if the temperature was a bacterial or viral infection.
Thursday, September 30: Shane’s still holding a temp around 100-101 which means he would probably stay another night. The first blood culture was negative. However, because the temp wasn’t going away completely, the hospital did another culture and Shane would have to stay until the results would be read on Friday.
Friday, October 1: Jody is still waiting to hear results of the second blood culture. Shane is still sporting a temp, so he will probably stay another day or two. Since it’s raining today, Pat got half the day off and will take Nicole to the doctor to get her arm casted. Jody told me the reason why Shane will be staying a day or two more is because his ANC (absolute neutrophil count) is 56. The ANC is used as the best estimation of body infection fighting abilities. The ANC count is best above 1000, but when it falls below 200 Shane has to use extreme caution not to catch anything. Therefore, he will have to wear his mask and be super careful about cleaning his hands and staying out of harms way. His other counts are as follows: Hemoglobin (RBC) is 6.6 – it should be greater than 11, but when it drops below 7 it could mean transfusion. His White Blood Cells (WBC) are 1.8 and his platelets are 51. The platelets should be greater than 100,000 and if they fall below 10 it also could trigger the need for a transfusion. With Shane’s counts so low, he cannot have his chemo treatments until the counts increase.
This was the latest news as of Noon on October 1. Another update will be placed on Sunday night to capture the events of the weekend.
BENEFIT INFO: Put Saturday, November 6, on your calendar. There is a benefit scheduled in Fosston, Minnesota, to assist in the medical costs that are accruing. Once the benefit is more finalized, specific details will be given.
Shane, He will command His angels...to guard you in all your ways. Psalms 91:11
Wednesday, September 22, 2004 9:30 PM CDT
Another update from a family friend.
Last Thursday, September 16, a speaker, Vicki, from Children's Hospital came to Shane's first grade class to talk about what Shane is doing when he is gone from school. Vicki was AWESOME! She did a great job explaining Leukemia to the children as well as the adults in the room. Here are a couple things she said:
"Shane is stronger than all the Vikings players, because all his body wants to do is grow. Because Shane is so strong, he can have very strong medicines. If these same medicines would be given to an adult, the adult wouldn't feel very good because their body is done growing and it isn't as strong as a child's body."
To explain what Leukemia is to the class, she had the children play "blood cell" roles to give all in attendance a visual.
First, the Red Blood Cells were to stand at the front of the room making strong arms. The Red Blood Cells are very strong.
Second, a White Blood Cell called a pointer is used to spot a germ cell. So that child stood at the front of the room pointing her finger like she found something.
Third, another White Blood Cell then moves in to surround the germ. So those children had to hold their arms like they were hugging or holding a large package. This WBC's job is to keep the germ from spreading.
Fourth, yet another White Blood Cell comes in and attacks the germ. So this student had to demonstrate punching like he was beating up the germ.
Fifth, Platelets are in the blood to join together to stop bleeding until a scab forms. So two girls had to stick together like best friends that could never be separated.
Imagine all of these blood cells doing their jobs (each child was doing their duty to represent their role) and a cancer cell comes in. Cancer cells don't have a job, so all they do is distract the other good blood cells from doing their job. (Now Vicki and another portion of the class were disrupting the good blood cells...lots of giggles.) This was a great way to show the students and staff that Leukemia cells are just making it very difficult for the good cells to do their jobs.
After this demonstration, Vicki continued to explain the procedures Shane goes through when he receives his medicines. She had a puppet which allowed her to remove a velcro patch to show the class what a port or medicine bump looks like under the skin. Vicki told the class that Shane has one of those and said that sometimes if Shane sees a ball coming at him and he thinks it might hit him in the chest, Shane will probably cover up his medicine bump rather than hit the ball back. Vicki had a gentle way of explaining that it is very important for Shane to protect his body and that means he may not participate at times and none of us nor Shane should get upset at his response.
Vicki also brought pictures of the hospital as well as an example of a needle to show the class how the medicine gets hooked up to Shanes medicine bump. At the end of the demonstration, Vicki gave Shane some bookmarks to hand out to all his classmates. These bookmarks had a little face made out of foam at the top (it kind of looked like Shane with black spiked hair). These bookmarks are to be used on the days Shane is not in class. It is a reminder to the students that even though Shane isn't in school, he still is a part of their class and wants to be there. I think the saying on the bookmark was something like this: "Shane's not able to be in school today, so I will send positive thoughts his way."
Over the weekend, Shane made a journey to Grandma LuLu's and Grandma Dottie's homes. He travelled well and had a good time seeing his Grandmas.
Tuesday, September 21, Shane received another treatment. Thankfully he did not have to have a bone marrow draw or a spinal tap today, so Shane was able to go to school for a couple hours after his treatment.
Wednesday, September 22, Shane was worn out this morning so he slept in and then went to school. During the day he also needed a rest, so he hung out in the nurses office for a little bit. Otherwise, he had dinner at the Old Country Buffet and is resting well tonight with a VERY full tummy.
Wednesday, September 15, 2004 11:40 AM CDT
Here's an update brought to you by a family friend.
Last week after Shane's second treatment, he did great! In fact, he felt so well on Wednesday morning that he woke up at 7:15 am all ready to go to school. He had already missed 5 days and was looking forward to meeting his teacher and classmates. School has been going well for him as he has been able to go to school every day (except treatment days) and ride the bus. Way to go Shane!
Yesterday, September 15, was Shane's 3rd treatment. When Shane enters the hospital for treatment, he has to wear a mask to limit his exposure germs in the entry way. The mask is very tight and sometimes he feels closter phobic, but he's getting used to it. Shane is reacting to the treatment very well. During this visit, the doctors had to sedate him so that he could have a bone marrow draw, spinal tap, and give him his treatment. After Shane woke up at 9:30 am, he had some breakfast and he was ready to go home. In fact Shane felt good enough to go to school; however, his tummy was a little irritated so he stayed home. Maybe next Tuesday he will be able to go to school after his treatment.
Some other things we're learning is that Shane has the munchies big time. It is a side effect of having to take steroids. He is eating every 2 hours or so and getting a little tummy. Shane's favorite treats are chips with melted cheese, salsa, and sour cream. YUM!
Shane also loves to shop. Because of his treatments and needing to limit germ exposure, he will have to do shopping in the early morning hours of establishments as that is the time of the day when germ level is at the lowest. Interesting isn't it?
Today, September 15, Jody got a call from the hospital with the results of Shane's bone marrow test. Good news! His count has dropped to 0.4 of lymphoblasts which means he'll probably be in remission after next week's treatment. The family is still waiting to see what time chemo will be scheduled and what procedures will be done.
Tomorrow, Shane is having a speaker come to his school to talk with his class about the changes Shane's body will undergo during the school year. The session is about 40 minutes and will educate his class on what they can expect and what to do to limit the germ level in his class to keep Shane as healthy as possible during this process. Things such as frequent washing of hands and sneezing into elbows to name a few will be discussed as well as answering questions his classmates may have on Leukemia.
Just so you know, if some time passes between journal entries, everything is going according to plan. The family sends their thanks for all the thoughts, prayers, groceries, and meals while they figure out their new routine.
Saturday, September 4, 2004 1:28 PM CDT
On Friday, September 3, it was great to see Shane disconnected from the IVs. He had a lot of spunk. Walking from one corner of his room to the other. Because of all the energy, Shane walked 1 block to McDonalds with his sisters and cousins for lunch. He ate a good lunch and then walked back to the hospital to have the needle taken out of the port to prepare him to go home and also receive 2 shots (one in each thigh).
His sisters hung around too. All 3 of them with Jody went to a class to learn more about what they need to do for Shane when he's at home and what to be careful about like sneezing into their elbows and washing their hands frequently to keep the germ level low in their house. Shane's bloodwork is going the direction the doctors want and that means by the end of September his bloodwork will be low (which is good in this case) but on the otherhand his body won't be able to fight unknown bacteria as well.
Shane did sleep in his bed last night at home and slept well. His doctor's orders this weekend were to have FUN, FUN, FUN as he will have another treatment early Tuesday morning.
Treatment plans are given to Shane on a month-to-month basis, so it isn't so overwhelming. For the month of September, Shane will have chemo every Tuesday along with a spinal tap and bone marrow draw. Shane will be able to start school on Wednesday (if he feels up to it) and will continue to go to school throughout the school year. He also will receive tutor help to keep him up with his class.
The website will be updated periodically by a family friend. Thank you for your continued thoughts and prayers.
The Killian Family
Pat, Jody, Nicole, Samantha, Shane, and Amber
Friday, September 3, 2004 9:53 AM CDT
Sorry to keep you all in suspense...Wednesday, September 1, was a groggy day for Shane as his body was still getting rid of the anesthesia from receiving the port. He goes through hot flashes which are uncomfortable to him. On the other hand, the air conditioning is increased and Jody is freezing. So while Shane is in shorts, Jody is in sweats and still cold. The port also gives Shane more freedom to move as he no longer has a splint on his arm for the IVs...the port is taking the IV fluids instead. So it is easier for him to adjust his sitting position while he watches a countless number of movies and shows.
Thanks to Grandma Dotty hanging out with Shane, Jody was able to leave the hospital for a few hours today to get the girls from their "First Day of School" and bring them back down to the hospital to visit with Shane more.
Thursday, September 2, Shane was feeling well today. He had a lot of spunk in his voice and his friend, Jack, came to visit and play with him. I know he appreciated having another boy to talk with. After Jack's visit, Shane took a long nap.
The doctors mentioned that Shane may be able to go home Friday evening. That depends on how his body is reacting to pain as the doctors are removing the Morphine drip. Shane also needs to get his bowels moving again.
Friday, September 3, Shane had a great night. He slept well with the exceptions of a blood draw and vitals. He didn't need any pain medication so that is good. His sisters, Grandma Dotty, and his cousins are going down today to have lunch at McDonalds with him. The doctors said that he could get out for a couple hours and the walk will probably do his bowels some good.
Tuesday, August 31, 2004 2:30 PM CDT
On Sunday, August 29, Shane was having trouble breathing so we took him into North Memorial Hospital. The doctor's did bloodwork and some diagnostic tests. What was discovered absolutely rocked our world. They felt Shane may have leukemia and told us to go to Minneapolis Children's Hospital for further diagnostic testing.
At Children's further testing was done and they too felt it was leukemia. Now they just had to find out which kind. More tests for Shane would need to be done on Monday.
On Monday, August 30, Shane was a trooper. He had to have a spinal tap and they also needed to draw a sample of bone marrow to further identify what we are dealing with. Later in the evening we discovered that Shane has Acute Lymphoblastic Leukemia (ALL). According to the doctor, if you are going to get leukemia, this is the one to get. Treatment for leukemia in boys is 3 years and 2 months. We are looking at one day at a time taking tiny steps to get to a BIG GOAL of being healthy. Shane's biggest and most taxing day on his body is tomorrow as further test results will come in and the therapy will start.
On Tuesday, August 31, Shane had surgery today to insert a port. The port is located under his right clavical and will be used for administering the medications Shane needs to rid his body of the leukemia. He also received his first dose of chemo while he was sedated. Of course, we don't know how he'll react to the chemo and we plan on being in the hospital until Sunday. Further updates will appear as we progress on this journey God has set before us. We are finding comfort and strength in knowing all of the loving people that are supporting us through thoughts and prayers and know that God will give us strength to carry us through what seems to be a heavy burden right now.
Click here to go back to the main page.
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |