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Drugged Up and Back in the Game
By Margot | May 17, 2008
Sam started new chemo this morning. Thanks to Neil’s major efforts yesterday and Jayne and Dr. Willert’s prompt responses we were able to get a prescription filled yesterday afternoon. One day is pretty amazing response time for something like this. We will be fighting with the insurance company but wanted to get started right away. Sam is swallowing down $200 each pill.  We chose irino/temodar. He can take it orally and many kids have had a good response to it. He swallowed down all of the pills this morining without a problem. Thanks to Aimee Jackson who let me know that we can put irino in capsule so that it goes more easily and thanks to John London for having the bright idea in the first place. We will be watching his urine numbers like hawks and be ready to change course quickly if things aren’t going in the right direction. We have learned that the VMA/HVA are Sam’s markers. LDH has stayed relatively normal so, not such a good marker. It’s a relief to have a plan in place and already have started treatment. Radiation should happen some time next week.
I explained to Sam that the cancer cells have come back and that is what is making his arm hurt. He said, “The cancer’s not all gone yet?” I told him we have to do some new medicine and that we might have to be in the hospital during the day to get it (before we’d decided on what we were doing). He said, “I’m ok with that, but I don’t want to stay over night.”
 Between zofran for his nausea and Vicodin for his arm pain we seem to have things under control pain-wise and Sam has been feeling fine. He takes from two to three Vicodin a day. He didn’t wake up asking for a pain pill this morning but then Andrew, while doing a headstand on the couch accidentally fell over and kicked Sam in the arm and poor Sam cried like he’d been hit with a sledge hammer.  He missed school all week but after feeling rotten yesterday morning, he was back to his old self yesterday afternoon. The Monaco boys came over and went swimming with us and then Sam took a Vicodin and said he wanted to go to basketball. He made it through the whole hour with a smile on his face and then played tag at the park outside the rec. afterwards. No one would have had any idea.  I laughed that he wasn’t up for school but of course was up for basketball.  The main side effect of irrino/temo is diarrhea and some nausea. Hopefully if we can keep that under control, he can go to school and do all of his regular stuff.  I’m knocking every piece of wood for that, oh and that it actually works would be nice too. Please say some prayers and thinks good thoughts for our little boy.  He’s a fighter. He seems to be feeling good today (three hours after chemo pills).Â
Thanks to evereyone for all of the kind emails and comments. I’m sorry I haven’t had a chance to answer them all but they mean the world to us. Â
MargotÂ
Topics: Progress Reports | 21 Comments »
May 17th, 2008 at 6:38 pm
Margot and Neil, I am so sorry about this progression, I am amazed at how fast you have a plan in place and at work, yes Sam is a fighter and he has one amazing army to fight along with him! I am sending every positive vibe/prayer/thought my being can master. Thinking of you,
love,
Ronit (Israel)
May 18th, 2008 at 1:35 am
WOW I am so impressed with the awesome speed of delivery on the new drugs, and praying wildly for the best ever response on record.
I love Sam’s unsinkable attitude. What an amazing incredible wonderful boy!
We love you Sam!!!!!!
May 18th, 2008 at 2:36 am
So glad you have started in on a new plan.
Praying it is Sam’s “golden ticket.”
Sandi Queen (Jeremiah’s mommy)
http://www.caringbridge.org/pa/jeremiah
May 18th, 2008 at 3:18 am
Sam – we missed you at school this week. Natalie is waiting for another chance to catch you at tag. We cant wait to see your smiling face on Monday- come with running shoes!
Natalie Storch and Rebecca (the typist)
May 18th, 2008 at 4:23 am
Soo glad to hear you have a plan in place and he was able to start so fast!!! Oh, what mountains we can move when it comes to our children!!!!
I’m thinking about you guys all the time and really hope this helps to back this beast off!!!!
with love
rhonda dudley
http://www.caringbridge.org/tn/sydneymarie
May 18th, 2008 at 4:31 am
Neil, Margot and boys,
Please know that your East coast Hutchison cousins are thinking of you all with love and prayers for a quick and positive response to Sammy’s new treatment. We are awed by your strength and courage and Sam’s fighting spirit. Bless you all.
Pam
May 18th, 2008 at 12:34 pm
I know this is not my normal choice of medium to express this sort of thing Marg, but reading the comments from so many people over the past few days and feeling the genuine, heartfelt support and emotion in them – well it just made me want to add how very much I love you. You and Neil are both truly inspirational, you constantly amaze us – as you so clearly do to so many people. But I have known and loved you your entire life, and though your courage and strength do not surprise me (because you have always had them in abundance), the depth of that well from which you continue to draw still more….it’s just hard to believe that ANYBODY (even my beautiful, incredible little sister) can do it.
But you know Marg, the one who tops even you is Sam. What a boy…what a son….what a brother…a friend, grandson, cousin, patient. What an incredible human being .
It goes without saying how much I – we all – hate this whole @#*@# thing and how we wish we coud DO something…Margot & Neil, know that we love you intensely…
I just wish that I could somehow fill that well for you.
Paul
May 18th, 2008 at 1:42 pm
Glad to hear you got started so quickly. It’s easy to forget the not insignificant challenge of getting your child to take oral meds when you DON’T have a g-tube. Great ideas from Aimee and John. Hoping for pain-free, school-attending, basketball-playing days for Sam while his VMA/HVA #’s drop back to normal!
May 18th, 2008 at 7:18 pm
http://www.mlive.com/health/index.ssf/2008/05/winning_spirit.html This is an interesting article about a local girl with medullablastoma. Of course you already know about the amazing strength of kids with these horrible diseases, but I found it interesting. Still praying for Sammy and all of you.
May 18th, 2008 at 7:58 pm
Glad you already have some thinks cooking in there to knock those damn cells back. Thinking of you and relieved to hear you have a plan underway. Im envisioning sinking VMA numbers as I write this.
Carrie
May 18th, 2008 at 8:20 pm
Margot and Neil,
I don’t know what to say, yet feel compelled to say something. Your family has been in my thoughts constantly since hearing your heartbreaking news about the return of Sam’s disease and having to start treatment again. Yes, I did know that he had been in treatment before, but to have it now return — I can only imagine what a smack in the face that is. Your strength is amazing — and Sam’s, too — all that you are dealing with; the worry, anger, frustration, helplessness — I cannot begin to fathom all the feelings that must go along with having your child sick with cancer — you must look at me and others whose conversations are so shallow and meaningless, complaining about the “rough” day we’ve had or whatever trivial nonsense is going on, and you must think “they just don’t have a clue”. I don’t pretend to know what it’s like to be in your shoes. Only those walking your walk can truly understand. Childhood cancer now has a face — Sam Hutchison. Inspiration also has a face — the Hutchison family. I am humbled, honored and awed to know your family. Sam is the happiest little boy. He always has a smile on his face. He loves basketball. He loves to play. Tommy looks forward to seeing him (and Andy)at practice every week.
I wanted to write and show my support — you have profoundly impacted how I will look at every day life. You are living the preciousness and fragility of each day, and prioritizing what is really important. Your entire family is an inspiration. I am sure this is a roller coaster ride that you can’t wait to get off of. I pray that this horrible cancer and this difficult time will be behind you, and that Sam responds well and quickly to the chemo/radiation. How incredibly strong you all are.
If there is anything at all you need or anything my family can do, as small as it may seem, please know we are here. Sam, and all of you, are forever in our prayers.
GO TEAM SAM!!
Jill
May 18th, 2008 at 11:35 pm
My eyes welled up reading some of the comments above as well as your last entry. My heart feels heavy for the burden you carry right now but I am also praying along with so many others and believe that prayers can move mountains…
May 19th, 2008 at 1:46 am
Watching and praying. This therapy seems to really chip away at this damn disease. I am curious to find out when they choose oral over iv irino???? Hang tough, the radiation and the chemo cocktail at the same time seem to work great!
Caryn and Nick
http://www.caringbridge.org/visit/francafamily
May 19th, 2008 at 3:26 am
Sam~
Sending you and your family lots of prayers, love and positive energy your way!
Love,
Mrs. Heather
May 19th, 2008 at 1:02 pm
You are amazing and Sam ranks as a superheo. Like everyone, I’m hoping that this kicks this #%$^@&(@)@ back into remission. Sam still has a ticket for a balloon ride in New Mexico this summer. Love Jan
May 19th, 2008 at 2:07 pm
Go Sam Go! We are behind you 100% and want every bit of success you can grab with this combo. Erin starts it tomorrow, so we will be a couple of days behind you. Let me know if you encounter anything that we need to brace for.
VB
erinbuenger.blogspot.com
May 19th, 2008 at 2:55 pm
Sam is DEFINITELY a fighter!!! Hoping numbers are back to normal soon and no pain!
Did you get my email about photos???
Many hugs,
Deb
May 19th, 2008 at 2:57 pm
Hutchison clan,
Our hearts ached as we read the news. Please know that our thoughts & prayers are with you!!
You are the strongest family we know & have confidence that you will get this licked yet again!!!! Please let us know if there is anything we can help with.
Love,
The Simpsons (don’t laugh)
May 19th, 2008 at 4:05 pm
Hey Hutchisons,
Just wanted to let you know that your former neighbor is still following along with your courageous journey, and sending you lots of good vibes from Connecticut. I have no doubt that love is a key ingredient in Sam’s treatment combo, and it’s clear y’all have no shortage of it.
All the best,
Deborah
May 20th, 2008 at 12:22 am
Hi Uncle Neil, Aunt Margot, Sammy, Andy, Charlie!
You probably don’t know me, but we’re cousins. I just wanted to say that Sammy is like my hero, being as strong as he is, and I pray for him every night. I just really wanted to say hi, and I really want you to read this. You dont have to respond or anything, I just wanted you to know.
god bless you,
Emily
May 20th, 2008 at 6:14 pm
Margot – I am thinking of you and your family and sending positive thoughts your way. Sam is a remarkable little boy with amazing parents. I’m eager to hear how he does with the new treatment – GO SAM!!!!!