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The Gameplan

By Margot | January 12, 2009

(written by Neil and Margot) 

For those keeping score, we are planning on topotecan, cytoxan, and velcade.  We will do a few cycles and plan on it being the entre’ to MSKCC in New York City for the 3F8 antibody therapy.    We are still hoping to go to Hawaii though will postpone it by a week so that it falls in week three (the good week).  Dr. Sholler thought that would be all right.

We had a great day today up at the park with the Bonebrake boys and then watching the Chargers – Steelers game, though it broke Sam’s heart — he vowed that when he grows up, he will be a  Charger and make them win :)  We walked home from the Monacos and he ran the whole way.

The protocol above requires 4 full days every 3 weeks in the clinic so Sam will miss school and he is pretty bummed. We sat him and Andy down and told them that we will need to be spending a bit more time than usual in the hospital for IV chemo to help beat back the bad guys.  Sam cried when we told him.  We hugged him and told him we will be with him every step of the way and we will make it as fun as we can.  The only thing he wanted to know was when it was going to start and then he let us hold him for a while and then wanted to play his Madden Football video game.  Mimi came over and cheered him up and he sounds happy as a clam down there now.  We, on the other hand, had to go upstairs and pull oursleves together. We told him that he  might lose his hair and that he and Dad and Andy could get matching mohawks if they wanted.  Andy is thrilled to say the least.  

People have asked what they can do and there is nothing really at the moment but we will try not to be shy about asking. Andy will need fun; Charlie will need fun; Sam will need fun.  For Margot and I, we’re doing ok.  Sometimes it is tough to breathe but we’re going to try and make sure we take care of ourselves which means running, eating well and the usual.  We have so many research ideas that are coming down the pike from peptide hormones, sonophotodynamic therapy, oncolytic virus trials, and other agents that look promising, that we have a lot of hope. The personalized medicine program at Vermont is going full-bore and we have even had Sam’s protein and gene expression analyzed in the UK to help guide treatment.  If you have extra money laying around (doesn’t everyone in this economy?) please donate to our foundation(www.magicwater.org) — it all goes to research institutions and the grants are directed by the parents.  We don’t have a signature event but every little bit helps.  Since the fund was established in June 2007, we have raised over $900,000.

 Thanks to everyone for the kind comments and emails, they have lifted us up and helped immensely.

Neil and Margot 

 

 

Topics: Progress Reports | 11 Comments »

11 Responses to “The Gameplan”

  1. Monica Says:
    January 12th, 2009 at 4:22 am

    Please know that we are here to help in any way that we can. You’ve beat this @#!! disease for 4 years now-you can do it again!! Our thoughts & prayers are with all of you.

  2. tom hutch Says:
    January 12th, 2009 at 4:40 am

    Redman and Marg’s…Time to dig deep…

    Abby and I will commit $1000 per month.

    More if we can. In your corner for the fight.

    With all our love.

    Tom and Abs

  3. Carrie Palmer Says:
    January 12th, 2009 at 4:42 am

    Hey guys-
    Expletive. Im sorry about the scans but am glad you have a plan. My heart hurts to read that Sam cried about being in the hospital. It sounds like 3F8 will be a good way to go to get back these little f^(*rs. Please know I’d like to help with magic water. Im not able to plan a big even tor anything right now but Im a good executor/delegatee. That is one way I can help- throw some work my way and I ll take it on. I think Pat talked to Jeff in the recent past as well and he will help however he can too. Thinking of you all- hang in there. Sam is so lucky to have you in his corner.

  4. Randee Ferry Says:
    January 12th, 2009 at 5:22 am

    Just want you to know you are in my thoughts and prayers. Another amazing NB family– Max’s Annee Ranee

  5. Abra McKean Says:
    January 12th, 2009 at 7:12 am

    Neil and Margot,

    I have been praying almost nonstop for you all over the last couple of days. I went to my daughters indoor soccer game today and found myself sharing your story and there are more here praying for you now. My 12yr old Shelby follows Sam’s site. I think its the red hair 🙂 Anyway she was pretty devastated when she read of the progression. This morning she said that she had a dream and that Nate came to her and told her Sam would be ok…through tears she said that she felt better and knew everything was going to be ok. So Sam has an angel with red hair looking out for him :).

    With Hope
    Abra

  6. deb Says:
    January 12th, 2009 at 7:50 am

    crap, crap, crap. i’m so sad and sorry to hear about the new spots. damn! know that i’m thinking about you and hoping for you and praying for you! xo! deb

  7. Laura Carlson Says:
    January 12th, 2009 at 4:00 pm

    As always, you guys are in our thoughts and prayers…all of us in the Sessions family will surround Sam (and the family) with love!
    Hang in there!

  8. Kim Kow Says:
    January 12th, 2009 at 5:06 pm

    This just sucks, but when you come to NY I will wipe Toys R US clean of all their Backugan stock. Tell Sam that he has a big fan in NY who happens to specialize in 8 yr old dates, so he needs to get ready for “fancy” pizza and games.

  9. Mimi Says:
    January 12th, 2009 at 7:08 pm

    I’m praying for Sam every day! He’s always in my thoughts. Though it may not be much, I could try and donate some of my Christmas money. Also, when is Sam leaving? I know he wanted to finish the movie we were watching at my house. 😀 God bless all of you. 🙂

  10. Lara Cady Weberling Says:
    January 12th, 2009 at 8:22 pm

    Just a note to say that I’m hoping Sam just rocks the new plan and that you’ll be in NYC in no time at all.

    Here’s to all the fun that you’ll be able to cram into every nook and cranny.

  11. Colleen Kuhn Says:
    January 13th, 2009 at 4:46 am

    Thanks for the voice-mail, Neil !
    We thought of you guys the whole game !
    Tell Sammy they needed his man, LT, to bring home the win.
    Will he root for the Steelers from this point on? 😉
    If he will, we’ll send him a jersey !

    and what can I say but that we have faith in you and Margot and Sam !!! The bravest people we know … who never stop fighting and we will never stop believing!!!
    All our love and good thoughts,
    xo,
    Colleen