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By Margot | June 11, 2009
We are home. Got in tonight around 10:30. Andy and Charlie tried to stay up but were fast asleep camped out in the living room waiting for us. Thanks to everyone for the NY suggestions. We did get in a lot. We took Sam to the top of the Empire State Building at 10pm on Monday night – he was still on CA time and there was no line. He loved it. I think that was the highlight of his trip. We also did a carriage ride in Central Park and went to FAO Schwartz and Times Square and a very strange restaurant that blasts off to Mars that he liked a lot.  He was great at hailing cabs and really loved doing it.  We got to visit with John and Catherine and Oliver-after which Sam said, “Maybe we should live here.”   We also got to spend some time with my friend Bekah and Neil Gudovitz both of whom Sam had a great time with and last night we got to have ice cream and play Clue with Meryl and Andrew and Ian -which Sam said was the high of his day yesterday. He wants to bring his brothers back to see everything. He did miss them and they missed him. Meryl asked if he liked having his parents to himself and he said “umm sometimes” but I think he would have liked everyone along.  However,  it was quite sobering to realize how much effort and money it would/will? cost to get a family of five around New York. Yikes. Talk about sticker shock. And the fact that I don’t know how people keep their kids from getting run over.  Anyway,  We ate at the Pizza place around the corner a couple of times and there is a really good breakfast spot on 75th and York that’s reasonable -Bennuchios.
I know you are all waiting for the medical report so here it is: we really liked Dr. Modak and Sloan was great -Sam loved the playroom. Everything ran very smoothly until we had a two hour wait downstairs for the CT.   Otherwise though, we really liked it there. Unfortunately, Sam’s MIBG scan showed progression in is legs, pelvis, spine and arms. We don’t have the official report back yet but Dr. Modak went over it with us and his words were, “it’s an impressive amount of disease.” Right on cue last night Sam started complaining of leg pain walking around Times Square and this morning he told me his lower back had been hurting but he hadn’t told us. Neil and I both thought he was limping a little the past couple of days but when we asked him if his leg hurt he said, “no.” He never wants to say much. His CT was clear which is good but Dr. Modak thinks we should try a round or two of ICE instead of the NK protocol since Sam has seen a lot of the chemo on the protocol already. Dr. Modak did say he looks fantastic and after getting his history and realizing he hasn’t had much high dose chemo in the past few years (comparatively) he thinks he should respond very well to it.  We will start on Tuesday after his last day of school. Whether it’s ICE or some other variation of high dose chemo, we’ll need to start soon. Hopefully if we can get him clear we can still do antibodies but now we need to concentrate on clearing his bones. We have a couple of other ideas in the works as well. Anyway, it will be back to lots of hospital time and probably bounce backs.   Not the news we were hoping for obviously.  I’m giving you the cut and dried version but it was a gut wrenching day.    He had a great third grade year though and I wouldn’t take a minute of it back and I know he wouldn’t either.  Now we need to get him ready for fourth grade so he has another good school year.
More soon on the new new plan and I’ll put some pics up as soon as I can. We got some good ones.
Margot
Topics: Progress Reports | 22 Comments »
June 11th, 2009 at 11:54 am
Tell the boys hello from Michigan. Keeping you all in my thoughts and prayers.
June 11th, 2009 at 12:22 pm
Thinking of you All and praying hard for the best possible plan for Sam.
Lisa Riniolo
June 11th, 2009 at 1:10 pm
You all have an amazing spirit despite what you are going through. Keep going strong…you guys are in my prayers! Angela (Madison’s Mom)
June 11th, 2009 at 1:24 pm
Still thinking of you guys often. I am glad you liked New York. It must have been very different for Sam. I’ll pray, cross my fingers etc that you can get things clear.
June 11th, 2009 at 1:50 pm
That is NOT the news I expected this morning. %^$^%&*&^.
Dr. Russell chose TVD instead of ICE last September when Erin progressed from Irinotecan/Temador, which stabilized Erin without sending her back to the hospital. (Seven days inpatient for the infusion, but no post-chemo fever stay).
Keep us posted and great big slurpy kisses to Sam, Andy, and Charlie from me and the dogs.
June 11th, 2009 at 2:47 pm
Im glad you had a good experience with Sloan and a new new plan. I am sorry the scans weren’t going in the direction we want- Im glad you have the high dose on board soon and keeping fingers crossed for minimal hospital stays and of course strong response. Ugh. Glad you liked Mars- my nephews loved it too (not sure if their parents did).
June 11th, 2009 at 2:49 pm
Margot,
Ok so this really ticks me off!!! I hate this @#$%&*@ disease… You sound ready for battle and I’m so happy that Sam had such a good time in New York. Margot please know that I’m here praying for Sam and for you and Neil and the Andy and Charlie. Thanks for keep us updated!!
With Hope
Abra
June 11th, 2009 at 5:30 pm
Hi Guys,
I’m glad you got to have some exciting days in NYC. But, I’m so sorry to hear about the new progression. Drat! But who better to beat it back into remission than Sam with the two of you behind him???
I’ll be cheering Team Sam on with the new plan this summer. I’ll keep that little red headed cutie in my prayers! I’m sure he’s got BIG things to do in the Fourth Grade.
Lara
June 11th, 2009 at 6:00 pm
Sounds like a jam- packed couple of days for the 3 of you !
Empire State Bldg at 10pm… must have been impressive !
Sorry for the results of the scan… but Sam is a strong warrior!
Keep the faith… we are sending good thoughts and wishes!
Keep his swimsuit handy for trips to the beach/pool when his treatment doesn’t interfere.
Love to all,
Colleen
June 11th, 2009 at 9:28 pm
Margot,
Sam looks amazing and can battle this. Such a great spirit and smile.
I will never forget your July 14th post… “God, please give us all of Eight. And then, we will come back and ask for all of Nine……”
Tell Sam our visit with him was the highlight of our day…and is the beginning of a Clue battle royale in our home.
Now, let’s get all of Nine!!!
Love,
Meryl
June 11th, 2009 at 9:29 pm
‘Glad you had a good trip to NY. So sorry to hear about the report-go nail this thing for the umpteeth time!Please let us know what we can do to help out-we are around all summer.
June 11th, 2009 at 11:20 pm
Yes, all of nine and then ten and then..
Margot, Redman, Sammy..come out swinging.
Thinking of you.
Love
June 12th, 2009 at 2:58 am
Every thoughtful and agonizing “tweak” of the game plan you have made thus far has resulted in sustaining a happy, well-adjusted, handsome, athletic, clever kid that everyone loves. We all know how strong your whole family is – keep up the strength and the good fight. We’re with you. Let’s go get all of nine!
June 12th, 2009 at 5:03 am
I’ve been following Sam’s story for a while and feel you are such a special family. Like you, we have 3 boys – what fun! Our youngest, Caden, was diagnosed with NB in July 2007. I completely understand the expereince you had at MSKCC, ours was very similar back in March. Our hopes of starting the antibody study have been delayed as we fight to clear the cancer we did not realize was growing within him until we saw the MIBG. I will contniue to keep Sam and your family in my prayers. I pray that we can meet up in New York soon.
Hugs,
Lexie
http://www.caringbridge.org/visit/cadenledbetter
June 12th, 2009 at 1:42 pm
Just want to let you guys know that we’re thinking of you and here to help if we can be of any during this new phase in Sam’s treatment. You’ve been making great decisions up to now (Modak’s surprise at how little high-dose chemo Sam’s had in past 24 months) and will continue to do so.
The Mikulaks
June 12th, 2009 at 2:30 pm
HI guys, I’m so sorry to hear news of progression on the medical front. I’m glad you had some fun in NY and that he likes it there. I’m continuing to pray and am glad that he is in good shape and good spirits as you continue the battle. He is a strong little boy and is on a great team. GO Team SAM! We are all rooting for you!
Love, Ellen
http://www.caringbridge.org/ma/seanhanson
June 12th, 2009 at 6:26 pm
Neil, Margot and Sam;
I just logged on after having not been on your site for a while….I am so bummed at the news that you received from Sloan….however, you know Sammy is so so strong and I have NO DOUBT that he will continue to be strong throughout this new phase.
If I read correctly, you will be back at Sloan sometime soon?? Will you PLEASE email me when you are going to be back in NYC….you are only 2 hours from us and I would be more than happy to drive into the city to see you guys- it would make my day. Plus my in-laws live in the city. I would love for you to meet my little man.
Much love,
Lauren and Dan aka “Rex” Grossman
June 12th, 2009 at 9:02 pm
Hi Margot and Neil, Thinking of you and sending you strength for the summer ahead. Sam is so fortunate to have such amazing parents. Margot, I sent you a little something. QVC (where I work) supports Alex’s Lemonade Stand and works with a jewelry designer who has a line called Alex’s Lemonade Jewelry. Part of proceeds go to the fund. I saw a piece that I thought was sunny and fun and knew I wanted you to have it. Neil, some of my family saw your brothers Matt and Bobby and your Dad at Mo Hartnett’s funeral last month. They all looked great…I’ll send you some photos. Please take care and if you come East you have plenty of places to stay! Love, Pam
June 12th, 2009 at 9:24 pm
First off, I just have to say I can hear Dr. Modak saying that “impressive” remark in my head. He said that about Nathan several times, unfortunately. I always thought it a strange choice of words.
Secondly, I just want to mention that whenever I hear someone is having ICE I want to warn them about Ifosfomide side effects. This is not to warn you against doing it by any means, I just wished someone had warned us of the possibility. There can be temporary neural side effects. Nathan was sitting in bed eating and then then next minute his hands and legs were useless! It also caused he to sleep, sleep, sleep. These side effects wore off about 24 hours after the infusion was stopped (and he got these side-effects even though he was given that methylene blue to prevent them). The bright blue pee was a more humorous side effect.
I hope Sam handles it all well and has not side-effects whatsoever – and that it knocks his disease back significantly.
June 12th, 2009 at 11:13 pm
Margot, So glad you’re home alltogether with everybody!! I know Sam loves his brothers and laughs at Charlie and plays with Andy! I knew the news wasn’t very good, when I accidently got you after the scans; but,I know Neil & you have some strong backup plans in mind; and I know Rady supports you on which ever source of treatment you decide! It will get better! I glad Sam can stay in San Diego and take the chemo after school is out! I know Sam had a wonderful field trip yesterday;and got his cast off to boot! He is an amazing kid and look at all he has accomplished with fighting this disease, having a broken arm and staples in his head!, going to New York, taking all those horrible tests; and then, going on his field trip and getting his cast off! He can beat back this “sucker” Been thinking and praying for you! Your birthday is up next!so, get through all the “uglies” so you can celebrate the good times! as you always seem to do! Much Love, Mom, Grandma Sara
June 13th, 2009 at 1:15 am
Thanks for taking the time from your very jam packed days to share Sammy with all of us–his fans and your friends. Love, Bev
June 30th, 2009 at 2:17 am
Margot, what can I do for you guys? My kids are in soccer camp this week and I still have a nanny in the afternoons. I am avoiding all of the Eddie related stuff that I need to do and would much rather help you guys if there is something I can do for you. Do you need food? A break? A punching bag? Let me know. Idle hands (and minds) are decidedly not good and I would be so happy to help.