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Day Three Down

By Margot | January 15, 2009

We have been getting home from the hospital every day at around 2pm which is very nice considering that when we did Topo/cytox the last time it was a ten to twelve hour day every day.   The dose is lower than it was but we’ve added Velcade on day 1, 4 and 8.   The three chemos together seem to produce good results according to Dr. Sholler.   Sam has had almost no nausea which is great.    Yesterday and Tuesday you would have had no idea he spent the morning getting chemo.   Today though he has pain in his upper left leg and is limping a bit.  This could be neuropathy from the Velcade -though I wish it were in both legs like last time, it’s started about the same time as when his legs hurt the last time after Velcade.   It could be disease because it is his left leg and there is a spot on the upper left leg.  It could be that he did something to it in basketball practice yesterday.  Yes, I know, you just did a double take on basketball practice but Andy had practice yesterday and we were out of the hospital and Sam wanted to  play some with Andy’s team.   I always take my cues from him on any kind of activity.   Unfortunately, his leg started to hurt last night so it may not have been the best idea.   Then again, it may not have mattered.  The pain could be a combination of one or two of the things I’ve just mentioned.   It’s always fun to keep guessing.    I was thinking last night that it might be easier on Sam if he was more like Stephen Hawking and his passion was physics.  It’s hard to have cancer in your bones and have your passion be sports.   I suppose he is passionate about video games too.  Maybe he’ll be one of those professional video game players when he grows up.  He’ll definitely have his 10,000 hours in per Malcolm Gladwell in “Outliers.”   We’ve done homework in the mornings and done legos and board games in the afternoons so he gets a bit of a schedule.  Thank goodness for Legos in the hospital.

VMA/HVA  from Monday is not back yet but since we hadn’t started chemo yet it’s not going to tell us much that we didn’t already know.   The official report on the scan correlated pretty much with what Neil and I saw. There is a spot on his forehead and not one on his jaw according to the report.   He has been in pretty good spirits.  He was yanking on his hair yesterday on the way home and said in a chipper voice, “When’s my hair going to fall out?”  He seems to have made peace with it. He had a playdate with Mack Bonebrake on Tuesday after the hospital.  Lisa was going to bring Mack by but we got out so early we went over to his house. Then yesterday he got to play at Joe’s house when we got home.  He just about broke my heart on Monday night because we were talking about being in the hospital during the day instead of school and I thought we’d be there until 7 or 8 pm.  I told him Colleen said Joe could come on Wednesday after school and maybe Mimi could come and that I’m sure Mack would come and visit him so he wouldn’t get bored.  His face just lit up and and he said, “Really?  People might come and visit me?  I can bring my video games so we can play.”   We are working on getting the child-life specialist to come to school and talk about things.   Sam wants to be there when she comes to talk to his class.   The last time we had her come in first grade he did not want to be there.    I know he feels really comfortable with his class this year and I’m happy he wants to be involved.  In first grade it was literally the second week of school so he didn’t know very many of his classmates well yet.  

We postponed our Hawaii trip for a week and will leave on the 25th of January.   We’ll be there through Andrew’s birthday so I need to reschedule his party but he’s excited to go.  He came home early from school today with a tummy ache but seems to feel fine right now.   Elizabeth picked him up for me.   She took Charlie to swimming yesterday and will take him to his Gym class tomorrow.   We are so so lucky she is here.  Our kids have known and loved her all their lives and it’s wonderful to be able to keep things as consistant as possible. 

We are working on several different paths for future treatment.  It is quite the chess game as certain treatments leave you ineligible for other things, certain treatments risk kidney and liver function, certain treatments that look promising are not open yet but may or may not be open soon. You just can’t count on timing trials because inevitably they will be delayed longer than what was first thought.

Charlie man is cute as can be.   He gets Andy to hide with him playing hide and seek and they put blankets over themselves on the couch and then yell,   “Mom, come find us!”, so I come down stairs and see two lumps on the couch and Charlie starts giggling as soon as I pretend to look for them.  Andy is doing well in school and tells me every day the score in soccer at recess.  I gave him a chicken sandwich from a chicken breast the other day instead of his normal turkey slice and when I asked him how school went he said fine but “the turkey was a little stale today.”   It cracked me up.

Margot

 

 

 

Topics: Progress Reports | 2 Comments »

2 Responses to “Day Three Down”

  1. Pam Hutchison Lafferty Says:
    January 16th, 2009 at 4:49 am

    Hi Neil, Margot and boys,
    Your East coast Hutchison relatives are sending lots of warm thoughts your way and plenty of prayers upstairs on behalf of Sam. If you do come east to NYC and feel like connecting with some crazy Hutchison cousins, be assured that we would welcome you all with open arms and plenty of kids for Sam, Andy, and Charlie to play with. Lots of dogs and cats, too, and plenty of room for everyone. With all of our love and concern, Pam

  2. katie feltman Says:
    January 16th, 2009 at 3:23 pm

    Margot – the whole team here is thinking of you guys and sending warm and positive thoughts in your (and Sam’s!) direction.