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The New Plan
By Margot | August 19, 2009
I probably shouldn’t write this now as there are tears streaming down my face and things will look brighter surely in a few days.  They are admitting Sam for pain today and we will do regular MIBG starting on Friday. His pain is disease progresssion. The result of his bone marrow biopsy from last week showed almost complete replacement of the marrow. Dr. Mosse was very hopeful that Sam will have a good response to MIBG and that as soon as he starts treatment his pain will be under control. She thinks we have as good a shot with regular MIBG so that is good and it’s important to get some treatment started now as in a week things may be out of control.  The goal is to do two MIBG treatments and then a stem cell rescue if needed.   Then if we have a good response we can get on something else that looks promising.  He’s always responded to treatment in the past when he’s had pain and the pain has gone away within a day. Dr. Mosse says his disease is mostly marrow disease and Sam is in great shape so we are still very hopeful. Somehow his platelets are still 117.
Sam’s day yesterday sucked. I already wrote that but Neil said he threw up on the plane all over everything. Neil just threw away the DVD player and then he had to go straight to the emergency room where they discovered he didn’t actually have a broken arm and then he went home on oxycotton which made his stomach hurt. Neil said he didn’t sleep well last night and so we decided he should be admitted for pain control.  He really wanted to go to the Phillies game tonight and Dr. Mosse said she’d give him a pass after some pain meds but Neil said tickets are impossible to get.   He will have his catheter placed on Friday morning and they will hang the MIBG around noon.
It’s funny because I was going to write a post with this title a few days ago after a conversation between Sam and Andy. Sam said. “I think I’ll go to UPenn for college so I can play soccer for them, Dad says they have a good soccer team. “  Andy’s response, “I’m going to play soccer in Spain.” Sam: “Spain? You can’t go to college in Spain. Where are you going to play in college? I haven’t decided where I’m going to play professionally yet but maybe Brazil. Don’t you want to be on my team?” Andy, “Oh yeah, I forgot I love Brazil and we should be on the same team. We’ll play for Brazil.”  As big Joe said, “You know Brazil, Spain, they’re young, they’re flexible. ”
Please pray for this new medical plan to work so Sam can get to work on his plan.
Margot
Topics: Progress Reports | 25 Comments »
August 19th, 2009 at 5:06 pm
UGH. I’m sending all my love and prayers your way for a fast pain-free recovery. I know Sam will knock this disease out with the next treatment!
August 19th, 2009 at 5:21 pm
I think I can get you tickets to the game tonight! Call me ASAP- 347-495-6155
August 19th, 2009 at 5:23 pm
Praying for a pain free day and good results on the MIBG treatments
August 19th, 2009 at 5:51 pm
Margs,
I’m thinking positive thoughts for all of you. Sam can do this – he’s such a fighter – and so are you.
August 19th, 2009 at 6:32 pm
Let me know if you get tickets or I will keep reaching out for them.
August 19th, 2009 at 6:43 pm
My heart aches for you. Brazil, Spain, the LA Gala. What the heck…. wherever, you’re all on the same team. Sam learned his flexibility from you. Praying that the next 24 hours will be totally different from the last 24. Hope he can get to the game just for the distraction. Jan
p.s. ‘I love it when a plan comes together.’ The A-Team
August 19th, 2009 at 8:52 pm
I’ve been a “lurker” for a long time, but, I had to let you know that you all are always in my prayers. I hope Sam starts feeling better soon.
Miss Sammie
August 19th, 2009 at 10:18 pm
Keeping all of you in our thoughts.
August 19th, 2009 at 11:29 pm
Margot, from another longtime lurker and longtime admirer — you know that all of your “indy connections” hold you all so much in our thoughts as well. Let me know if there’s anything any of us can do here, and by gum, I’ll get it done!
August 19th, 2009 at 11:48 pm
dammit. my tears, too. you’ll all get through this. andy sent a note via email – where can we send some hospital ‘fun’ for sam?
August 20th, 2009 at 1:00 am
ugh… sorry to hear of the disaster day… but we are thinking and praying for Sam !
hoping his pain is gone soon !
wishing you all strength and comfort,
xo, kuhn’s
August 20th, 2009 at 1:23 am
I have lurked here for a while and never commented. I am thinking of your family tonight, and will be thinking of Sam in the days to come.
August 20th, 2009 at 1:26 am
Margot, is there anything I can do or that Neil needs? I am planning to go to Philly on Friday anyway.
You are all in my prayers.
–Sherry
August 20th, 2009 at 1:43 am
I am so sorry Margot…
what a blasted nightmare…praying constantly for my little hero…
My heart aches severely for you Margot and Neil
God hear our cry!
August 20th, 2009 at 2:24 am
Margot,
I’m one of Neil’s friends from work. If there is anything I can assist with from that end please let me know. I hope this treatment gets rid of Sam’s pain quickly and furthers his recovery. Your family is in my thoughts and prayers.
Jim
August 20th, 2009 at 2:37 am
We are praying still – praying that this plan is “the one.”
Can’t be in a better hospital than CHOP.
I never cease to be amazed at how Sam, after all he’s gone through, continues to forge ahead with his own plan to be just a regular little boy – playing soccer, surfing, and all. Surely his determination to live life to the fullest is a help to his body’s strength!
Sandi Queen (Jeremiah’s Mommy)
http://www.caringbridge.org/pa/jeremiah
August 20th, 2009 at 3:24 am
Margot,
We are going to Philly Friday. We plan to take some hospital fun by for Sam. If you’re still planning to fly in on Friday, let us know when you’ll get in, and we could try to pick you up at the airport and take you over to CHOP.
Hoping the best for all of you,
Doug P.
P.S. I’m sending an email also.
August 20th, 2009 at 5:34 am
Margot, please call me day or night for anything you need. I’m just a couple miles away. Sending you all some light.
August 20th, 2009 at 4:33 pm
Dear Margot and Neil,
I’m praying hard that MIBG clears Sam’s marrow. I think of him everyday with losts of hope and faith. I see his big smile and pray for his complete healing.
Thinking of you all,
Lisa
August 20th, 2009 at 6:36 pm
Sending love and strength and no more pain . . . and prayers for the magical appearance of some Phillies tickets during your stay.
Nancy
August 20th, 2009 at 6:39 pm
Keeping you in my thoughts and prayers. Please let me know if there is anything I can do to help you out. ♥
August 20th, 2009 at 9:34 pm
so, SO sorry about the news. I wish there was something we could do but you guys are on it and this will turn around — there is no other choice. Know we are sending our very best wishes from Wisconsin in both directions – east and west for your whole family.
With friendship and with hope,
Sarah Bartosz
August 21st, 2009 at 2:35 am
Sal wanted me to say hi i told him you had to do what he did in the blue room he wanted me to say thanks for hanging out with him and playing the DS with him he also said you are a cool dude. Oh he also said his new favorite game is batman lego cause thats what that cool kid said is his favorite game. Hang in there you guys i have a good feeling this will knock the ***** out of that NB.
Vanni Family.
August 21st, 2009 at 3:13 am
Margot and Neil,
We are with you, in spirit,…when the news is not so good. We know Sam’s will, and spirit…. He is strong, and will overcome this beast, and reign victorious. The days ahead will be hard, but he will win……as he always has. God bless you all, as you fight this ungodly fight.
Our prayers and thoughts are with you.
Love, and always hope,
The Adamsons
Diane, David, MaryGrace and our angel ^Emily^
http://www.caringbridge.org/fl/emilyadamson
August 21st, 2009 at 3:27 am
Marg & Neil-
Please let me know if there is anything I can do to help. We would love to have Andy and Charlie over if go to be with Sam and Neil. We are praying for you guys.
Talk to you soon!
Cathy