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Much Better
By Margot | August 31, 2009
Sam has gotten incrementally better every day since we’ve gotten home. He stopped morphine the day after we got home and stopped limping a couple of days later. He needed a cart ride and to be carried  through the airport but now is not limping at all. Wohoo! His tongue and taste budswere still pretty screwed up so getting him to eat has been a challenge but that seems to be getting better too. He’s been swimming up with Uncle Tom and Abby last Thursday and Friday, Saturday was swimming and some park football with the Monacos (no noticeable limp) and then yesterday swimming with the Bonebrakes again.  We are so so thankful. MIBG must be working!!! We got a blood check this morning and his platelets are holding at 169, red blood 8.5, ANC 2278. We are scheduled to go back to CHOP for scans on the 6th and 7th of October and then we’ll start the second MIBG treatment on the 9th of October. The idea of a second treatment/going back to Philadelphia went over like a lead ballooon withSam. Hopefully though if we’ve knocked back the disease with this first one, pain won’t be an issue. As I said before I’ve stopped promising that “it won’t hurt a bit” for anything. Diane, Dr. Maris’s nurse said that we will probably need the stem cell rescue after the second treatment but since we are not on a trial so we can do it in San Diego.Â
Meanwhile, this week is two birthday parties. We would like to thank soon-to-be nine, Mack Bonebrake. On his birthday invitation, he asked that in leui of gifts for his birthday, that everyone donate to MagicWater.  Mack, you are an awesome guy and a great friend to Sam.
Also this week we are getting ready for school. The kids are really excited about school. Andy can’t wait to do recess with Sam. Even Charlie has caught the fever. He got new school shoes when we bought Sam and Andy’s and he refuses to take them off.  He wakes up first thing in the morning and says, “Mom, put on my new socks and shoes.’ Andy and Sam both picked out backpacks bigger then they are. When Neil suggested they might be too big, Sam said, “Dad, I can fit my skateboard in there and skate down the hill from school home.” The hill from school is straight down so it is not happening on a skateboard. Sam’s been arguing with me about it this morning trying to convince me “that’s it’s totally fine” on a skateboard. That’s a good sign right? I’m going to try to meet with Sam’s teacher on Friday to talk about his FM system and the school that he will miss.
Uncle Tommy and Abby and Grandma Joan left on Saturday. I don’t know how to thank them enough. They took Andy and Charlie to Legolandand big hotel with a pool the whole week we were gone. Talk about a good distraction.  Both boys had a ball and Charlie is still asking when we are going back to Legoland and when are we going to the hotel?   Thanks Uncle Tom and Grandma Joan!Â
I’m going to try and get it together this monththat we have off. As you can see from my last post, I was not in a good place last week. I think I’m holding together well but I seem to manifest stress by losing my mind. I lost my license in the airport, left the brand new DVD player at the airport along withhis PSP player and all of the games. Luckily a security guard picked it up and we got it at the lost and found. Also, the day before I left, I was out front with Charlie on his scooter and Colleen picked up Andy for tennis and he left his skateboard out front so I hopped on it (I don’t skateboard by the way) got going too fast and while trying to jump off tore something in my knee so I’ve been limping for the past two weeks. It was not my brightest moment. I’ll finally see an ortho guy this week to get that taken care of.  I’ll also have to go by the DMV for a new license.
Anyway, things are good here with Sam and Andy and Charlie and we are so very thankful.
Today the Mikulaks have been without their precious little boy for one year. We are thinking of them and Max today.Â
Margot
Topics: Progress Reports | 12 Comments »
September 1st, 2009 at 12:11 am
Woohoo! Great to hear things are looking up for Sam and he is having fun:) BTW My license expired 3 years ago and I have still not gotten my butt to the DMV-so hats off to you if you go!
September 1st, 2009 at 12:40 am
Margot and Neil, I am so relieved and happy to hear how well Sam is doing. Everything seems to be moving in the right direction and its only the first week. He’s going to do great!
Margot, don’t worry about losing it… we all do. Most of the time I walk around feeling like my brain is mush.
Try to relax (as best you can) and enjoy your month of “normal”.
Thinking of you all,
God bless
Lisa Riniolo
September 1st, 2009 at 1:01 am
Glad things are steadily getting back to “normal”
Angela (Madison’s Mom)
September 1st, 2009 at 1:48 am
I am so glad that Sam is feeling better. He has been on my mind. Andy and Charlie are so adorable as well. Good luck with the beginning of school.
September 1st, 2009 at 5:33 am
Margot,
So so happy to hear that there has been steady improvement. Having your child in pain and not a whole you can do to help is unbearable and the fact that you survived that with a messed up knee and lost drivers license I think is pretty good. We are here in Washington praying as always.
Love
Abra
September 1st, 2009 at 6:35 am
maybe Sam can ride the skateboard down the hill… Sam can do anything.
September 1st, 2009 at 3:18 pm
M- I do hope you are OK – But, if I see you… ‘hair on fire, leg in brace, hearing aids in hand, backpack wearing, Charlie carrying, skateboard riding, pulled over by a cop (for no license)’ on the first day of school… please don’t be offended if I giggle a little before I give you a hug. Miss you my friend.
September 1st, 2009 at 5:47 pm
Great to read this!
September 1st, 2009 at 9:25 pm
So glad Sam is feeling better!! Tastebuds will be back to normal in no time. Enjoy being home together!
Love to all of you,
Silvia
September 1st, 2009 at 9:41 pm
So happy to hear Sam is without pain and this treatment
is working !
Love the new shoes story with Charlie! He is so dang cute !
Andrew is going to love having his big brother around on the playground ! And I think Sam will love having Andy around too !
Margot, girl, you take care of yourself !!!!!! Put that leg up when they are at school and rest ! (That is a foreign word to you… isn’t it? 😉 )
Prayers for healing for all,
xo, the Kuhn’s
September 5th, 2009 at 11:04 am
Hey margot
so glad that Sam is feeling better, Grandma told me about your skateboard incident, silly.
wish you all of luck
love maty
September 6th, 2009 at 10:47 am
HI, I’m glad to read that Sam is feeling better. I lost my mind a few years ago. I just put a hook up so I can “find” the car keys, etc. Your doing a great job balancing everyone and everything, just stay off the skateboard!! Best Wishes, enjoy your month off. love, Ellen
http://www.caringbridge.org/ma/seanhanson