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Rituxan
By Margot | December 16, 2009
We are in the hospital today doing a rituxan infusion. Rituxan is normally used for NB kids to get rid of HAMA with 3F8’s. There is strong evidence though that it also gets rid of NB stem cells. Neil can send info. if you are interested. Sam came in early with Neil for his blood check and then I came and met him to take him to get something to eat while we waited for the blood work. We drove over by Wal Mart and he said, “Mom, my stomach hurts, can we just go get presents for people instead?” Sam is a great present giver. He comes up with some great ideas because he’s so observant of people. He has no regard for price of course and doesn’t hesitate to suggest big ticket items for people.  We had a great time together picking out bakugans for his friends this morning and in typical Sam fashion, the minute we got back to the hospital, he said, “Now I’m hungry, can we go get something to eat?” Since his blood work was fine but it would be a while until the Rituxan came up from the pharmacy, we left again and went out to eat together.   I had a lot of fun teasing him this morning and he does such a good eye roll at me that I have to laugh.
We started the infusion around 11. We’ve done one other infusion of it a couple of weeks ago and Sam had a reaction to it so we had to do an epi shot and observe him for a day. This infusion has gone very smoothly, no reaction and we are getting close to getting out of here.   We’ve made quite a bit of headway on the Prisoner of Azkaban.
Sunday night Sam woke up in a lot of pain. His left arm hurt and hydrocodone alone wasn’t  doing the trick. If you’ve ever been up at 3am holding your son’s hand while he writhes in pain and asks you to make it stop and you are telling him to hold on, the morphine will kick in soon, you know it is not fun. If you haven’t done it, then I never wish it on you.  He stayed home from school on Monday but once the pain medication was on board he was fine and walked around and even helped with Andrew’s basketball practice in the afternoon.  He’s been on and off pain meds for the last few days for his arm.  We’ve upped the dose of rapa, we have radiation starting tomorrow and we are requesting a new drug, nitisinone, that our team of doctors thinks is pretty reasonable. Neil can give you more information on that one. Sam made it to school yesterday and Grandpa came and gave a talk on magnetism to his class.  He was kind of embarrassed for Grandpa to come but Miss O’Donovan talked him into it and my dad was great. The kids really liked it and Sam asked him to show him some more magnet tricks last night after dinner.  By the time school was over Sam needed another pain pill so I’m hoping the radiation hits it quickly tomorrow. Friday is his Christmas party and he really wants to go. His class is so awesome and so happy to see him when he comes. He had a good day yesterday. The only hard thing about school is that he knows the plans for the next couple of days and then we have to yank him out again for hospital stuff. I’m going to try and squeeze in school tomorrow between appointments so he can make ornaments  Colleen said that his class has a present for him on Friday so we’ll get him there after an early radiation appointment. I have been holding steady emotionally somehow but the oddest things set me off. I was in tears this morning reading emails from the moms in Sam’s class after I volunteered to bring cups and plates for Friday and they all emailed back that they have it covered and just worry about bringing Sam.
Santa has been working very busily for our boys and to give you a clue what he’s been working on, Neil’s quote is, “Do you think the boys could just concentrate on one sport?”  Grandpa has been a huge help and his poor bank account has taken a hit out here 😉 but it looks like it will be another “deprived family Christmas” as my parents used to joke when I was growing up.Â
Andy is doing well and looking forward to his Christmas party as well. He started basketball on Monday and had all-star soccer practice yesterday and tomorrow and then has a tournament on Saturday with four games in one day. He’s having fun with Grandpa and really looking forward to Christmas. He told me the other day that “Frosty is impossible, Mom.” I started to get a little sad that he might be figuring things out but then he continued, ” The real guys of Christmas are Santa and Rudolph. Rudolph always leads the sleigh.”
Charlie boy is good. He had two good days at school this week, he made us a Christmas present which he is very excited about and played with his buddy Hank both days.Â
We are finished so I’ll finish up quickly. LDH 2100, VMA 52 HVA 81.
Margot
Topics: Progress Reports | 6 Comments »
December 17th, 2009 at 1:40 am
So glad you two had the chance to go shopping together. Christmas shopping with a 4th grader is so much fun. I have a blast with Natalie and all her Christmas excitement. Love you guys, hoping and praying for the best outcome from this weeks visits.
December 17th, 2009 at 2:24 am
Margot & Neil-
You guys always manage to make watermelon punch amid all the chaos. We are thinking of Sam around here and hope that Sam has a painfree Christmas. Im sure the radiation will kick it shortly. Sounds like you have some fun things to do this week for christmas to balance out the not so fun- School christmas parties are the best! Sending good thoughts your way.
December 17th, 2009 at 3:32 am
lots of love and Christmas wishes sent your way !
Hope he can make it to the party on Friday and please say hi to your Dad for us!
Tell Andy Rudolph was always one of my favorites !!! 😉
Prayers for all,
xxxxxooooo,
the Kuhn’s
December 17th, 2009 at 5:32 am
Margot,
Just sent off a xmas package today…meant to get it off earlier but somehow the days got away from me. I will be saying estra prayers for the pain to get better and Sam to make his party on Friday.
Luv
Abra
December 22nd, 2009 at 9:06 pm
Just wanted to send our Christmas wishes to all of you from Houston. We miss you and love you!
– Nicole, Reed and Wyatt
December 25th, 2009 at 5:29 pm
Merry Christmas, Neil, Margot, Sam, Andy, and Charlie. Love, Bev.