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The Band is Back Together

By Margot | October 16, 2009

We are home and as Neil says, “The band is back together.”   We were almost the Beatles for Halloween but the boys weren’t up for it.  I guess it’s a good thing since I’m a little tall to be Yoko ;-).  

We stayed in the hospital Sunday night thinking Sam might need a platelet infusion Tuesday morning after the scan.  We didn’t, Sam was still at 75.  The scan still looked like there was a lot of uptake and the spot above Sam’s knee is super-bright but Dr. Maris says that scan is only to make sure there is uptake and not diagnostic and the diagnostic scan was much much better.  After the scan, Uncle Matt drove us (Sam and me and Grandpa) to Washington D.C. and gave a us tour of his former city, hitting all of the major memorials but the Lincoln and we all went out for tacos with Uncle Matt’s friend Susan.   Sam had a good time with Grandpa and Uncle Matt.  He nicknamed Matt “Uncle baldy” even though he’s not bald.  We stayed at the Mayflower (Neil kept calling me the Mayflower Madam (ha ha)). I got an awesome deal on priceline.    We didn’t see Elliott Spitzer.  Tuesday we hit the Air and Space Museum and The Natural History Museum.  Sam liked both, he saw a mummy and The Hope Diamond and we watched the IMAX movie The Wild Ocean in the Natural History Museum when we were worn out from walking.   It was great to have my dad with us.   Thanks Dad. Our family friend Amy came and had lunch with us.  (Amy I’m sorry we never made it back to Penn Street Sam wanted to see the Lincoln memorial).  Our last stop in Washington was the Lincoln Memorial.  It was about 5 o’clock in the evening and a beautiful night.  The park ranger gave a talk on Martin Luther King and then played the “I Have a Dream” speech.  It was a pretty magical moment sitting on the steps of the Lincoln Memorial snuggling close to Sam listening to that amazing speech.  Sam said it was one of his favorite parts of his visit to Washington.    No disrespect to Dr. King but as I listened to his speech I thought of my own “I Have a Dream”  speech for cancer parents and it involved less barbaric treatment and less time away from home and less time in hospitals and less and pain and trauma in general and of course it involved long normal lives.  

We took the train back to Philly and Sam was impressed that he went through four different states in one day- Philadelphia, Maryland, Delaware, Virginia, and D.C..   Sam was hungry at 10 at night (very typical of him) so we got to meet Donna and Erik Ludwinski  in the Korean restaurant across from the Sheraton.  It was wonderful to meet them and spend some time with both of them.  We tried to give Erik the dirt on MIBG treatment as he is starting today.    We also met the Chances in clinic on Wednesday when Sam was getting platelets ( he was at 22)  Patrick is such a cutie.  Unfortunately the Chances got news of a bigger lesion yesterday – this sucky sucky disease – and will be changing treatments.   Please keep them in your thoughts.  We met the Malicks (Kayla and Lori) in the clinic as well.  It’s like an NB conference at CHOP.     Sam and I left after he got his platelets and we talked with Dr. Maris and Diane Baniewicz. 

Neil said Andy all day on Wednesday kept saying, we have big day today, we get to pick up Sam!   Even given all of the above activities, the biggest brightest smile from Sam was the minute the wheels of the airplane touched the ground and Sam asked, “Are we in San Diego?’  He raised his hand for a high five and started pushing on me to get off of the plane.   I had to remind him that the plane was still moving.    It is so so nice to be home. There were three very happy boys at the baggage pick up on Wednesday night.  Two normal days of school and soccer and a normal family dinner giving our highs and our lows are like heaven.  Even with fighting boys.    Charlie went to preschool yesterday and cried again like his heart would break but then I spied on him from behind a telephone pole and he perked up after about five minutes.    His teachers said he had a great day but he still looked at me accusingly when I picked him up and said, “You took a long time to come back Mom.”  

Please keep all of the families fighting this nasty disease in your thoughts and prayers.  Please think good thoughts for Sam not bouncing back in to the hospital when his counts get low.  Children’s Hospital is totally locked down for the swine flu and if Sam goes in he can’t have any visitors or little brothers come to see him.  His taste buds are still fried.   He’ll probably need platelets again by Monday.  But otherwise he is feeling fine and wants to play soccer tomorrow.  So many people have told us how well he looks.     Here are some pics in front of the Whitehouse.  We ran out of camera batteries shortly thereafter.

Margot

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Topics: Progress Reports | 7 Comments »

7 Responses to “The Band is Back Together”

  1. tom hutch and abby Says:
    October 16th, 2009 at 10:47 pm

    Cheers and cheers and more cheers for Sam-

    Marg’s – the depth of the depravity of NB can be measured inversely by the song like description of MIBG uptake..the rest of us are worried about radiation from our cell phones and Sam takes in enough radiation to fry an egg..the better of two poor choices..

    Sam is in our thoughts day and night…every time I think about something positive I remember Sam’s load and the family’s help in bearing it…

    Three cheers for Samuel Thomas Hutchison..

  2. Jan Says:
    October 16th, 2009 at 11:18 pm

    Thrilled by the latest news. Hope to hear that “the band plays on” for a long time to come. Best, Jan

  3. Tom and Anita Says:
    October 17th, 2009 at 2:43 am

    Good news. Lots of thoughts and prayers for Sam. Let me know when he is ready to hit some tennis balls. Tom

  4. Colleen Kuhn Says:
    October 17th, 2009 at 4:54 am

    Love it… the band is back !!! Tell Neil to get out his drums !!!

    Smiling at the photos and seeing the happy faces !
    I smile even more when I imagine the broad grins at the baggage claim from three redheaded Hutchisons upon seeing Mommy and Sam arrive !!!!!

    Have a wonderful weekend! Enjoy soccer and all that your spectacular city has to offer !!!
    ( You amaze me… you saw more in those two days in DC than some Easterners have seen in two years ! )

    Love to you all,
    Colleen and crew

  5. Ellen Hanson Says:
    October 17th, 2009 at 7:51 am

    Home Sweet Home!
    Thinking of all of you and praying!
    love, Ellen
    http://www.caringbridge.org/ma/seanhanson

  6. Dorean S Says:
    October 18th, 2009 at 3:16 pm

    Glad to hear you are home safe, sound and most importantly together. Keeping you in our thoughts and prayers.

  7. Vickie Buenger Says:
    October 18th, 2009 at 7:09 pm

    Love the look of Sam in front of the White House, and only wish it were years from now and he was there to visit President Erin. I’m thrilled that Sam looks fantastic and that he enjoyed DC so much.

    VB