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180 Degrees
By Margot | January 9, 2010
Sam is studying angles in math and we talked this week about what it means when someone does a 180 so I thought it a good title for this post. After a sleepless Thursday night where we were chasing pain and trying to get Sam comfortable we had a long day in the hospital yesterday where Sam got platelets, hydration, x-rays and a pain team assesment. Our friend Joanne, the parent liason tried to talk to Sam about ordering a wheel chair and he was having none of it. We read the The Prisoner of Azkaban (almost finished now) about the Hogwarts exams where Harry and crew  have to perform magic to pass and I felt as though I were having an exam on patience. Sam was difficult, weepy, tyrannical and demanding between bouts of just complainy (all drug and pain induced).  In the afternoon I was reaading to him and he wanted me to sit next to him on the bed on the side of his pump becasue that was most comfortable. I had to crawl underneath his platelet lines and then about an hour later I got up for something for him and ripped the needle right out of his chest and it left a long scrape down his chest. He had a new dressing that’s kind of like a band-aid and easier on his skin but it comes right off. I’ve never done that in five years and I was shaky and Sam was shaky and scared. We had to reaccess him and the achohol swab totally stung and I felt terrible and like a total idiot. He was fine long before I was.   Neil and the boys brought the Wii in the evening before we went home and Sam started to perk up a bit.   The pain team put him on continuous release oxycontin which Rebecca the nurse said is “the happy drug” vs. morphine and prednezone.   We also gave him his first dose of nitisinone yesterday around noon. When we packed up everything to leave at around 6:30 Sam did the most amazing thing. He got out of bed and he walked to the car. He was limping and a little out of control from being so weak but it was the first time he’s walked in a week.   On the way home he sad, “Did Dad give me a new medicine today because my legs feel much better?”  This morning he woke up and was happy as a clam. We had an early morning chess game and then Andy and Charlie came down and I was in the kitchen and Sam did something else he hasn’t done in a week, he laughed.  I didn’t realize what music that is to my ears or the fact that I hadn’t heard it in a while until he did it.  He is walking/ limping again this morning. I don’t know if it’s the happy drug or the nitisinone (yay Neil) or the tamoxifen or the sulindac, or germanium or the rapa or the vinblastine was causing some of the leg pain or working and it was tumor kill (yes, the Hutchison phamacy, like Charger bench is very deep) or a combination of everything but we’ll take it.   If there is a better example of a 180, I don’t know what it is.
Just two quick quotes I wanted to put down. Thursday night in the middle of the night when I was trying to help Sam find a comfortable position after Neil had spent the first half of the night doing so. We got him to where he felt better and he said, “Mom,” I said, “Yeah, thinking that he was going to ask me to move his pillow or arrange the covers, “Do you know in the new iCarly?” “Yes,?” Carly kisses Freddy so that means that both she and Sam will have kissed him. Remember the one where he and Sam kissed?”   So this is what Sam is thinking of at 3:30 in the morning after he’s found a comfortable position.  Also, Andy and I were talking about his sports party he was joking and said, “Yeah see if you can get Roger Federer, David Beckham and Kobe Bryant to do the party for us. Ha Ha That would be great.” and this morning when they were all talking about what kind of dogs they would be Andy said, “Charlie would be a poodle because they are all girls.” Qoutes from Charlie this week pretty much all involve, “Roscoe, Rosky, Ros.”
Thanks to Uncle Andy and Grandma Sara for all the UT hats the boys look great in them and were wearing them for the game. We were rooting for them. Too bad the mean evil Alabama pulled it out. 😉
Happy Saturday and thanks for all of the prayers and kind comments during this rough week.
Margot
Topics: Progress Reports | 13 Comments »
January 10th, 2010 at 12:35 am
From every angle, that 180 is impressive, inspirational, and downright great. Pharmacy or no pharmacy, a good percentage of the turnaround seems to somehow be from the depth of Sam’s spirt and attitude. Yahoo for everyone – including Andy and Charlie, who provide the best kind of comic relief and love. Lotsa Love, Lisa
January 10th, 2010 at 1:26 am
That is right Sam. Have none of it. No wheelchairs or any of that..
Good on you Sam and Red and Margo.
January 10th, 2010 at 2:00 am
Margot, Been there..Done that..TWICE. I wanted to cry both times but of course didn’t because melina was watching me to closely. The first time was after removing a tumor from her spinal ending in a spinal fusion. Her pain was intense and moving her from side to side took Joe and I and was still difficult. One shift a little far and out came the drainage tube in her back. Not Fun!
The second was with this last surgery. In the PICU..trying to help her back in the bed with a zillion tubes hanging from her..Joe stepped on her port line and out it came. Again not fun!
Momemts we wish we could forget….
Always, Always praying for sam,
Lisa
January 10th, 2010 at 6:23 am
This is exactly the sort of update I needed to read tonight!!! still praying extra hard.
Love
Abra
January 10th, 2010 at 2:27 pm
The Hutchison pharmacy is surely deep but so is Hutchison Chief Science Officer and Hutchison Chief Keeping-It-All-Together Officer. You guys are doing an amazing job in a more difficult situation than anyone has to endure. So happy to hear that the pain has somewhat subsided and praying that tumor kill is some/all of the cause.
Praying for a quiet/fun week for you guys.
Andy
January 10th, 2010 at 4:10 pm
I want you to know that I pray for your family every day. As i have said before, if there is anything that I can do to help, please let me know!
Your family is amazing!
Lori
January 10th, 2010 at 6:43 pm
wishing you laughter, every minute, every day, every week. Jan
January 10th, 2010 at 11:00 pm
I seriously think most of the western world should read Team Sam everyday for a reality/perspective check. And if sports teams or corporations are looking for the true meaning of resilience, love and support – it’s you guys!
Check it out:
noun
1. the power or ability to return to the original form, position, etc., after being bent, compressed, or stretched; elasticity.
2. ability to recover readily from illness, depression, adversity, or the like; buoyancy.
“Sam” is a lot easier to say and write and sums up all of the above – plus so much more…
Love you guys,
Paul
January 12th, 2010 at 3:08 am
Yes Huge Reality check for me too. Always hopeful… Angela (Madison’s Mom)
January 12th, 2010 at 4:13 am
East coast Hutchisons are thinking and praying for our West coast cousins, especially Sam. Love to you all.
Pam
January 13th, 2010 at 3:43 am
Can’t tell you how great it was to see you for breakfast at Kona’s (did I get that right?) (and walking Roscoe/Rover. I’ll write again soon. I’m about to collapse into bed and try to get back onto Texas time.
Vickie
January 14th, 2010 at 4:13 am
The Kuhn’s wish you all more and more laughter, esp. coming from Sam every day !
Thinking of you,
Colleen
January 14th, 2010 at 4:41 pm
How goes it these days??? Just checking for an update. But – no pressure. Hope all is well.
xoxo
Lara