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Much Improved
By Margot | October 7, 2009
Sam had an 8am scan this morning and Neil just called after meeting with Dr. Maris and Dr. Mosse and they are both very happy and see things as much improved. We got rid of most of the bone marrow disease.  Sam still has quite a few bony lesions but we made some really good headway and Dr. Maris was very pleased.  Hurray!   Sam wore his Giants jersey today to torment Dr. Maris who is an Eagles fan ;-). Yesterday he wore his Chargers jersey. I think he really likes Dr. Maris. Sam beat Neil at chess this morning and he was so excited to tell me about it. They’ve been playing a lot of chess and not doing a lot of homework -Ack! but are having fun together. Neil said they were on their way to Chilis for lunch -a two block walk up a hill from the hotel and all Neil heard the whole walk was, “Why can’t we get a cab?” “Where is a cab?” “Cab Dad?” All of our kids love the idea of hailing cabs ever since we went to New York City. The whole idea that someone will just stop and give them a ride is great to them.  Sam’s platelets are at 29 and he’ll get an infusion today and then an infusion of red blood cells tomorrow to get ready for MIBG. The therapy works better when the kids are tanked up on blood and platelets.  Dr. Maris didn’t seem too worried about the hematuria (bleeding bladder) and said it’s almost positively cytoxan damage plus dehydration.  He’s been clear since the cytoscopy but had some blood today (probably the low platelets). We are getting ready for the stem cell infusion in San Diego in a couple of weeks. I’m hoping we are all set by Halloween but we’ll have to take it one day at a time. Today’s a good day.
Back on the home front, Charlie went to preschool all day yesterday on his own. I left him screaming and crying but called in and he was doing better sitting in circle time and singing. He had a playdate afterwards at the park with Hank, a little guy in his class and they had a good time so I think he’s got a buddy now. I showed up to pick him up and he pointed at me and said, “Where were you?’ It killed me. Â
Andy is doing fine. He made a rolly poly habitat at school and has been finding rolly pollys all afternoon after school and now he’s got about seventeen rolly pollys.  He spends a lot of time practicing kicking his soccer ball outside.  We went and got some Halloween stuff at Party City and I had to steer him away from anything to gross in terms of decorating. I’m going to take him on a date day for his half day of school today and we’ll go do something fun together. Maureen is going to take him to his soccer practice, back to school night and basketball on Friday. She’s going to spend the night with the boys tomorrow night and then Neil will get home on Friday. Elizabeth will pick up Charlie from preschool tomorrow and Colleen is going to do school pick up for Andy tomorrow and Friday. So, as usual it is taking a village. So, Thank You Village!
I’ll update again when I get to Philadelphia. Good Scans today. Wohoo!
Margot
Topics: Progress Reports | 17 Comments »
October 7th, 2009 at 6:58 pm
Hi- Great news- been thinking of you! Made my day. Lets hope the next round is the knockout punch.
Safe travels-
Carrie
October 7th, 2009 at 7:01 pm
Never thought I’d be so excited in my life for radioactive material to be infused into someone’s child but I’m really happy about this news and looking forward to round 2 getting to work on the bone lesions! My three least favorite football teams are the Giants, Eagles, and Chargers so Sams choice of shirt cracked me up!
October 7th, 2009 at 10:40 pm
Yay for the great news!!! That made my day too!! Please let us know if you need anything else in the village.
xoxo,
Meredith
October 7th, 2009 at 11:13 pm
WoooHoooo indeed!
October 8th, 2009 at 12:12 am
Margot
WHAT AMAZING NEWS!!!!! You have made my day 🙂 As always we will continue praying here in WA.
Luv
Abra
October 8th, 2009 at 12:33 am
AWESOME NEWS!!!!! Let the radiation begin!! We’ll just miss you guys arriving next week, if we have no more dramas between now and then!
Caryn, Jim and Nick
October 8th, 2009 at 1:05 am
SWEET! This is just what I’ve been waiting to hear.
I can’t even wait for the next set of scans to look even more improved!
All the little dudes love Dr. Maris!
Lara
October 8th, 2009 at 1:16 am
Sitting in the PICU at Children’s of Buffalo and am so happy to see great results for Sam.
Sending possitive thoughts for the rest of the week.
Lisa
October 8th, 2009 at 1:33 am
FABULOUS news! hooray for sam and hoping that this next round kicks NB butt. love,
mooki
toby pannone’s mom
October 8th, 2009 at 1:44 am
So happy to hear the wonderful news! Next round will be even better. Sending good thoughts and many prayers your way.
October 8th, 2009 at 1:44 am
Go Sam… the good news makes me think of that Black Eyed Peas song” I gotta Feeling… Its gonna be a good, good day! ”
here’s wishing more good, good days and nights for all of you !!!!
Love, the Kuhn’s
October 8th, 2009 at 1:48 am
Way to go Sam!
October 8th, 2009 at 2:33 am
Redman and Margs…keep turning over those rocks and fighting for a better answer than you heard just so many months ago. Redman, when I talked to you today at lunch I was so happy at the relief in your voice; I could touch it.
Reading in the WSJ today about the MD who helped introduce Gleevec to fight CML cancer in kids. The editorial talked about everything we see right here on this page..parents, the FDA, MD’s and the kids fighting the war..the editorial was a tribute to MD’s who passionately fight these bastard cancers at every turn.
The editorial was named A Doctor In Full-emphasis on In Full…as in a Doctor not in name only…like Maris and Scholler and whomever else keeps looking for answers and taking risks-not able to accept the status quo. People who fight the FDA and get novel treatments out to kids- like this treatment-Doctors In Full.
October 8th, 2009 at 4:39 am
Great news! I’ll be thinking of all of you and praying for great results in Philly!
October 9th, 2009 at 10:36 am
Dear Marg and Neil, OLE!,Bravo!Hooo-ray! Fantastic news! I am so happy for all of you and so happy Sam is mastering chess! great game for mind improvement,and that he beat his dad must make himreally happy!! Don’t worry about the homework you know he’ll get it done with you Marg! Hope “yuall” had a lovely evening in Philadelphia together all 3, before Neil flies home tomorrow! Called the homefront got Maureen; and she allowed everything is great there; and that Charlie went to preschool all by himself and that he had a blast!! She said she took Andy and Charlie to “Back to School night”; and never saw so many little boys running around! I’m taking your Dad to the airport this morning fortified with lots of paperback 4th & 5th grade books! Again so happy about the improved scans.
Love, Mom, Grandma Sara
October 9th, 2009 at 8:08 pm
Great News!! We were so happy to hear the report and hope that this second round will get after what’s left. I know you are in Philly now and Neil is on his way home so I hope the transition was smooth, travels were safe, and you and Sam get through this next round as quickly as possible.
Hooray for Sam and all of you!!
Sarah Bartosz and family
October 11th, 2009 at 4:53 am
Great news! I’m looking forward to hearing even more! Bless you all on both coasts! Love, Ellen
http://www.caringbridge.org/ma/seanhanson