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Back at It
By Margot | January 5, 2010
We were in the hospital all day yesterday getting Rituxan and vinblastine. Sam’s pain returned on Saturday and has been getting worse in the past couple of days. He’s been on hydrocodone and prednezone and yesterday when we got to the clinic his arm was hurting so badly that he got a dose of morphine. We met with the pain team (it was actually just one nurse practitioner but she’s part of the pain team). She thought Sam should be on something around the clock for at least a few days.   We started yesterday and switched to morphine at 11:45 as he was having some wicked pain.  Denise from the pain team said that around the clock meds will improve Sam’s general level of comfort and that’s it’s better to just give it on a regular basis as kids can be stoic (Sam) or learn to live with a certain level of discomfort (I’m sure Sam) or just not want to say anything (Sam on Saturday after 36 holes of miniature golf,”I didn’t want to tell you my leg was hurting until after we went miniature golfing so you didn’t change your mind.” ) I just spoke to her again and we came up with a morphine oxycodone combo for him. He is very worried about not being able to play baseball this spring as he’s been really looking forward to it.  We are working on a plan and trying to get Nitisinone approved through our insurance and should be starting that soon. We are also looking for other alternatives. He and I did some homework this morning and now he is playing chess over at Billy and Vickie’s house.
Andy went back to school and had a pretty good day but got his card pulled for “goofing around”. He had basketball practice last night and is trying to decide what to do for his birthday party. He’s suggested a party at Disneyland or taking everyone snowboarding both of which made me laugh out loud. I guess you gotta start big but I was thinking more like a sports party at the park.   Charlie started back at school today and the whole way there kept saying “I want to skip.” I left him crying at drop off again but hopefully when I pick him up he’ll be in better spirits. Sam’s become a chess addict.  He played chess against Uncle Matt last night and won and he beat me yesterday in the hospital. He has been playing against the computer on a website Neil found him after reading an article about the new 19 year old phenom who learned by playing the computer and now is the chess champion of the world.  None of us can beat the computer on easy but it’s teaching the boys some good moves.   We’re still working through Prisoner of Azkaban but have been only reading a few pages at a time because the boys were going to bed so late over the holiday.
Sams white count looked great yesterday, red blood was 10.5 and platelets 80 so his counts have come back up nicely. It is hard to ignore the wolves at the door when Sam is in pain. It takes the breath out of me to watch our nine year-old get into the bath/come down the stairs/get into bed as if he were eighty-nine. He is walking better today and after radiation his arm should feel better.  It’s crazy to me how his pain goes from zero to sixty. One day he’s walking and playing fine and then bam! the pain is waking him up. He’s 26 kilos so we met with the nutritionist yesterday as well and we went over all the high calorie options for him. I sliced up an avocado with his dinner last night and am going heavy on the cream. He weighs less than Andrew and I can feel it when I pick them both up. Â
Margot
Topics: Progress Reports | 7 Comments »
January 6th, 2010 at 12:22 am
Painful to read.
Sam, knock it back on its ass like you have so many times before and plan on playing bball this spring.
5 Years ago (in exactly two weeks from today) you were diagnosed…you have beat the experts best guess and we pray for continued strength and willpower to beat this SOB.
Never give up. It is a Hutchison motto. Dont.
January 6th, 2010 at 1:56 am
And one more thing, Sam. The most important thing.
All of us out here in the Teamsam circle have it tough-tough jobs, situations, economies, the full monty of tough…and sometimes I remember how tough you have it and how tough you are…tougher than any of us…something deep inside of you is as tough as steel..
You live as a life lesson for all of us…we stand in awe.
January 6th, 2010 at 1:14 pm
Tom has stated it SO WELL !
Ditto from the Kuhn’s!
Love and prayers,
Colleen and gang
January 6th, 2010 at 3:01 pm
Margot,
As always we are praying here in Wa. So sorry to hear that Sam’s having so much pain….I will pray that the pain team can get him back to “0”.
With Hope
Abra
January 6th, 2010 at 4:49 pm
We are praying for Sam and all of you from here in WI and know we will be happily reading the baseball reports when the season starts. Stay tough, stay strong, and stay the course. Trust your gut and your instincts on the best way to move forward as you are wonderful parents who have done an amazing job managing this horrible disease while giving your darling boys great quality of life.
With friendship and hope,
Sarah and the I Back Jack crew
January 7th, 2010 at 3:24 am
Keep the Wolves Away!! GO Sam Go! Angela (Madison’s Mom)
January 7th, 2010 at 6:41 am
I’m praying for Sam and your family. I’m amazed at what you all get done. I hope that Sam is pain free very soon, and back at playing/school with his brothers and friends. Praying for your continued strength, and his comfort, as you beat back the beast yet again. With lots of positive thoughts and wishes, Love, Ellen
http://www.caringbridge.org/ma/seanhanson