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The Plan
By Margot | June 13, 2009
Sam and Mom in front of UFO Schwartz
Before ride around central park
Top of Empire St. Bldg. -Dad too chicken to get near the edge 😉
Sam and The Adorable Oliver
Sam and Dad with Andrew and Ian after Clue
Charlie nearly too big to fit in his little car
Andy being Andy at the park
We have decided we are not ready for ICE. We are going to do TCV: Topo/Cytox/Vincristine nasty enough in itself but perhaps not quite as nasty as ICE. Dr. Modak wanted to do a couple of rounds of ICE but what we will do is try TCV first. If Sam doesn’t have a good response, we’ll switch to ICE. We are going to scan again in three weeks. Sam will be inpatient for the infusion. He is going to need a lot of hydration due to previous bladder damage. He still pees blood every now and then when he is not well hydrated.  His CT showed “a thickening of the bladder wall” which we knew – damage from Cytoxan so we need to be very careful . He’ll be premedicated with Mesna which protects the bladder and on continuous hydration. We do not want to be in the position where we can’t do any more chemo before it has a chance to take effect.  We are still shooting for 3F8s if we can but we’ll take it one day at a time and see how it goes.  He is feeling well, complaining a little of tailbone pain but it seems to be controlled with Tylenol. He went on his field trip on Thursday to Old Town and then got his cast off after school.  He was very happy about that development and is now in a splint that he can easily take off.  He had a good day on Friday and was happy to be back at school. I’d let him sleep in Thursday morning and got him there just in time for his field trip. He got his regular “Normy” welcome when I walked him to school. Everyone yelled, “Sam!” and he got a big smile on his face. He helped me with the basketball draft last night for Andy’s age group, he was very good at rating the players.ÂÂ
Andy did really well in the draft. He’s becoming a good  I drove for his field trip yesterday morning to the zoo. We had a nice time, though it was a long walk with five and six year olds who started telling me they were hungry the minute we parked probably only a half hour after breakfast. Towards the end of the day we met up with another mom and her group at the turtles. She laughed and said that her group of girls were all wiped out but immediately perked up when Andy arrived on the scene. She said, “he is the cutest kid, he should be Hukleberry Finn and he’s just so nice. The girls all love him.” It was nice to here. He is very happy to have us all back. I’m calling all hands for him this next week. The last day of school is on Monday, he has a speaking part in the final school program. We’ll go inpatient on Tuesday so if you are on your way to the park or somewhere with your kids that might be fun for Andy and or Charlie please give us a call. Charlie would probably be happy just seeing Jett for a day -no pressure Kelly ;-).  Elizabeth will be here of course but some distractions might be good for Andy especially. Also, on that note, Sam won’t be neutropenic and can have visitors. He is a visitor junkie in the hospital when he’s feeling good and sometimes says to me, “So who is coming next?”
Charlie man is also very happy to have us all home and the whole household is back to chaos as usual. Charlie is still patently refusing to be potty trained. His response to any suggestions is a resounding, “No.”  He is so darn cute though, it’s hard to get too frustrated. He got some new “worker trucks” with Elizabeth so we have been playing a lot of “worker truck.” He knows the names of them all. We chase a lot of bad guys with his police cars too.
More soon. Thanks to everyone for all of the kind comments and emails, they have helped keep all of the despondant thoughts at bay.
Topics: Progress Reports | 16 Comments »
June 13th, 2009 at 7:07 pm
Thinking about ya’ll nonstop… praying hard… Sounds like a good plan for now.. I love your attitudes and you inspire me nonstop to not only keep fighting for Syd but to do it the way you guys do.. full of life, and fun and happiness for all of your boys!!! Love you lots!!!
rhonda dudley
June 13th, 2009 at 11:44 pm
Joe says he’s be there to visit Sam on Tuesday.
June 14th, 2009 at 12:48 am
Hello Hutchisons:
I wish I could be coming next to see Sam and to entertain or help with Andrew and Charlie. All of you are in my prayers, and they are constant. Sam is my hero for his bravery. Glad that you got to see a bit of NYC. This distance is a pain. Love you all!
Grandma Joan
June 14th, 2009 at 12:49 am
Keeping you in our thoughts and prayers.
June 14th, 2009 at 1:37 am
The plan sounds like a good one! Thinking of you guys a ton! If you need to drop off the kids at any time – lemme know. I’m sure they would love to play with the boys and our new puppy. Sadly, even though I would love to bring Natalie by the hospital to visit her 2nd grade love… third grade has somehow made them skittish around eachother, and it might create too much tension. Lemme know though- ice-cream sundays and Wii RockBand always seem to break the ice. Love you all… call us for anything!
June 14th, 2009 at 4:16 am
Sounds like a plan guys! I will be thinking of Sam and all of you as you go inpatient this week. In a couple of weeks its our turn to start Melina’s chemo. I’m not looking forward to it. I’ll keep sending prayers Sam’s way that the chemo does what his body need s it to do with the least amount of aggressiveness to his body as possible and that it gets him to his 3F8 goal.
Thinking of you all, Hang in there,
Lisa Riniolo
June 14th, 2009 at 7:39 am
Hey Margot,Neil,Sam,Andy and Charlie, I miss u and I am thinking about my brave ( but silly 🙂 ) little cousin Sam all the time. Another movie will be coming soon.Keep fighting Sammy!
love Marty
June 14th, 2009 at 10:21 am
Sounds like a plan guys! I will be thinking of Sam and all of you as you go inpatient this week. In a couple of weeks its our turn to start Melina’s chemo. I’m not looking forward to it. I’ll keep sending prayers Sam’s way that the chemo does what his body need s it to do with the least amount of aggressiveness to his body as possible and that it gets him to his 3F8 goal.
Thinking of you all, Hang in there,
Lisa Riniolo
OH! You’re my new favorite blogger fyi
June 14th, 2009 at 2:48 pm
hi sam-
i hope you feel better
love
abby
andy i want to bother you.
charlie you are so cute!
June 14th, 2009 at 2:49 pm
Dear “H” Gang: Glad to read that there were some fun times in NYC to offset the others. I am so sorry for the yucky news about the progression. As always you are like daruma (also called dharma) dolls- the ones that get knocked down and bounce back up – in other words amazing. There is a tradition of filling in the right eye of a daruma doll while thinking of a wish. I am wishing for a successful outcome from this round of treatment so I can fill in the second eye when that wish comes true. I’ll wish for a complete cure for NB on the next doll. Your love for each other is your source of strength. You are all in my heart & prayers. Jan
June 15th, 2009 at 4:41 am
Glad you have a plan. Praying for great results and on to 3f8’s. God Bless, Love, Ellen
http://www.caringbridge.org/ma/seanhanson
June 15th, 2009 at 5:32 pm
We will be thinking of you every day here in Texas and sending our positive energy and thoughts you way! I hope we can see you soon. Wyatt and Charlie would have so much fun playing worker trucks together. Wyatt refuses to use the potty either and he’s older than Charlie. Stubborn little guys aren’t they?? Miss you,
Nicole
June 15th, 2009 at 8:11 pm
Sending you all thoughts and prayers as you naviaget this treatment. Looks like you are getting some MUCH needed fun time before all the pain and treatment begins again. May this option give Sam the cure he needs. REgards to potty training. My third took FOREVER..stubborn and maybe the attention of his older brother treatment/followups gave him something to make his own. Hey, no one starts 1st grade in a diaper!
Hugs and prayers, Leann
June 16th, 2009 at 1:13 am
Can you post your room number when you get it. I am assuming you are at Children’s? Angela
June 16th, 2009 at 4:56 pm
Hi Everyone! The pictures are wonderful ~ it’s so nice to see you all together in NY. We will be praying (as we always do) for Sam’s well-being during this next treatment. Wishing you all the best and sending you love and prayers.
June 16th, 2009 at 6:28 pm
I can’t believe I didn’t post the first six times I dropped by and read this post.
Anyway, I’m glad you decided to hold off on ICE. That would have been so tough for summer vacation.
Thinking of you five hourly.
VB