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Getting Ready for Santa
By Margot | December 18, 2009
I just got back from Sam’s school Christmas party. He had a great time. They played the greedy Santa game and he stole the new Diary of a Wimpy kid book and got to keep it which made him very happy. It was great to watch him smile and laugh with his friends. His pain went away after the Rituxan infusion for a couple of days and then was back this morning but not too bad. He had a hydrocodone and was fine. We punted on the radiation yesterday.  It was one of those decisions we made on the fly. We have been very careful ever since Sam did his first radiation treatment to avoid his growth plates. We had one doctor shrug and say, “So he’ll wear a lift in one shoe,” when we brought it up when Sam was five. Luckily, the spots we’ve radiated up until now have been just outside the growth plates. Yesterday, when we asked just before Sam was ready to go in, Dr. Murphy said, “Yes, it will hit his growth plate and I expect him to have growth issues in both the arm and the leg. The disease is right in the plate. At the time Sam had not been in any pain for two days and our thinking is/was this, since it was not palliative (he hadn’t been in any pain) and he has widespread disease we are going to have to bet on a drug to knock it back.  If we find a drug that does knock it back then we don’t want him to be left with the propect of bone legnthening procedures which are horrific.  Also, we can always change our minds and do the radiation at a later date. Â
Sam was happy that he gets to go to school all day today. We are picking him up right afterwards for a vinblastine infusion. We are hoping to gear up for some clinical trials after the first of the year. In the meantime we’ll do some ice-skating and movies and playdates over the holiday. His VMA went down four points this week so that’s good. Andy’s big soccer tournament is tomorrow. I’ll try to post an update and some pictures.  Charlie had Jett over today and they had a great time. Elizabeth told me about their conversation the other day, “Hey Jett is your school stupid?” “Yeah my school is stupid.”  “Do you want to go?” “No I don’t want to go.” “I’m going to skip my school.”  “Yeah me too, I don’t want to go.” They are three mind you. Kelly (Jett’s mom) thinks we’re in trouble when they are fourteen.  Pics below of the Charger game, Sam after he stole the Wimpy Kid book in the Greedy Santa game today and Andy getting his academic award a couple of weeks ago…
- The boys at the Charger Game
Topics: Progress Reports | 8 Comments »
December 19th, 2009 at 3:11 pm
Marg’s..
Thinking and praying for Sam…
Dont think of bone stretching..one of my arms is 2.5 inches shorter than the other and my back is bent and I have a windmill in my head…Don Quixote in my head..
So dont think about it..think about today. T
December 19th, 2009 at 4:51 pm
great advice from your bro-in-law !
Enjoy these excitement filled days of candy canes and sugarplum
fairies!!!!
Charlie….. he is certainly the third child ! 😉 I remember our Andrew saying things when he was 5yrs old that 10 yr olds would say… Nick and I would be scratching our heads !
Have a great weekend and hugs to all,
xo, Colleen
December 19th, 2009 at 9:29 pm
That smile just melts my heart every time:)
PS
You know you’ve done a great job as a parent when your son steals a BOOK in the greedy santa game!!
December 20th, 2009 at 5:50 am
Awesome pictures!! Sam’s happiness certainly helps fight the nasty NB disease.
December 23rd, 2009 at 4:42 pm
Merry Christmas to you all! Loved the picture on the Xmas card. Give hugs to all my nephews.
December 23rd, 2009 at 11:01 pm
Love to hear the updates. Merry Christmas to your whole family. Sam is a true inspiration.. Stealing a book – that trait is from his mother – definitely.
December 25th, 2009 at 3:28 am
Merry Christmas! Hope it is Merry!
December 28th, 2009 at 6:47 pm
Wonderful pictures. You have such a terrific family and are truly blessed, even with the challenges you record so well for all of us who are rooting for you all.