Bonescan Today
By Margot | March 5, 2010
I am sitting in clinic watching a sleeping Sam waiting to go to Nucmed for a bonescan. We are doing a bonescan in preparation for a possible samarium infusion at UCSD. It’s a radiation treatment. Sam would be the second kid to try it from Rady’s, the first patient had great success although she wasn’t an NB kid and was newly diagnosed so different. There is a little one paragraph paper on it having been used on an NB patient who was on a pain pump and was off of it within a couple of weeks.   Here’s hoping. The following is a link to a pretty easy to understand paper about it for those of you who are curious: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472939/  We figure radiation was so successful with his liver and the bumps on his head are literally gone after the skull radiation so maybe another type of radiation treatment is a good idea. It will supress counts but since we have four more bags of stem cells left and Sam’s counts at the moment are no great shakes…Â
Which leads us to Sam’s counts and current condition. He is on oxygen at home now after having developed a nasty cough at the tail end of last weekend. All of the boys had a great visit with my brother and Marty.  They were both like medicine for Sam and he was determined to stay out of the hospital while they were here.    Wednesday we were scheduled to have a bone marrow biopsy to see if Sam’s marrow is just tired after all of the treatment or if it’s packed with disease. We had platelets of 14 on Monday, got a transfusion and then had 14 again on Wednesday.  Today we are at 24.   He got blood on Wednesday as well. Sam’s white counts which has been holding up brilliantly have dropped to the 300’s this week which in combination with a cough and high fevers in not such a good thing.  We have kept out of the hospital as we are on home antibiotics and fluid and the pain pump and the awesome nurse Liz comes and checks on us at home. So Wednesday, Sam’s oxygen level was only 85 and we skipped the bone marrow biopsy and set up home oxygen. He wasn’t thrilled about the idea but it makes him feel much better to have the mask on and he’s been wearing it and wants it on or at least near his mouth all the time. He’s had some pretty uncomfortable nights the last few nights with his cough, pain, and fevers. His cough seems to be getting better though and his oxygen level was better this morning without the O2 so hopefully we are going in the right direction on that front. His sodium levels have been up and down and he’s retaining fluids again now so that his belly and feet are swollen. We got lasix on Wednesday which helped but can’t get it today because sodium is low again. The chest x-ray from Wednesday showed some fluid in the bottom of his lungs which could be from fluid retention or pneumonia. No telling if high fevers are disease or pneumonia.
Neil has a line on several other compassionate use drugs and treatments that could be a “next thing.”  He is talking to everyone possible and exploring every possible idea.  The samarium treatment is important from a pain standpoint. Sam has been pressing his pain button more and more in the last five days and we have upped his pain dose three times this week and are switching today to a continuous drip on the pain pump with an added bolus when he pushes the button and we are getting rid of the oral continuous dose he’s been on.
From a spirits standpoint, he has been such a trooper. We are on the final book of the Percy Jackson series now (what I’ve been doing besides updating). He’s played a lot of scrabble too. My brother figured out a way for me to fold the ginormous jogging stroller we have into the car (have had it since Sam was born and never figured out how to fold it). It’s perfect because it is big enough to fit Sam and he’s happy to ride in it because it is not a wheelchair. So he went to a couple of Andrew’s soccer practices and we walked him down to Yogurt on the Rocks in the stroller.  He hasn’t lasted too long out and about though in terms of comfort. Mack came over yesterday and Sam was feeling pretty rotten and coughing up a bunch of gunk from his chest but he  Sam rallied and played a game of scrabble and was really happy they came. Thank you Lisa and Mack! I know neither of you were probably prepared for what you were in for.
If you pray, please say a prayer for our sweet Sam. In the middle of all his hurting yesterday he told Neil and I that we “are the best parents in the whole world.” All we want to do is be worthy of being his parents.
Margot
Topics: Progress Reports | 33 Comments »
March 5th, 2010 at 11:30 pm
Lots of prayers being said everyday! From what I read on your blog, you ARE the best parents.
March 5th, 2010 at 11:46 pm
Sam is right.You are the best parents in the whole world. May our prayers give you strength and wisdom to fight!
March 6th, 2010 at 12:06 am
Lots of prayers for Sam. Lots of prayers for the rest of you too.
March 6th, 2010 at 12:13 am
Sam’s right about so many things, including what wonderful parents you are. And, he plays a mean game of scrabble, even when he’s in so much discomfort. Lots of wishes and good thoughts for rest for you all. Be good to yourselves. Pick up the phone anytime for stuff big or small. Love, Lisa, Mack, Kirt, and Grant.
March 6th, 2010 at 12:51 am
Hey guys, im already missing sam and everyone even though it hasnt been that long and Sam is right about you guys but not only are you the best parents in the world your the best aunt and uncle.
Sam keep on fighting hard and kicking but in scrabble and chess.
love You lots
Marty
March 6th, 2010 at 1:16 am
Praying for you all every day!!!
Sam is definitely a trooper. What a guy!
March 6th, 2010 at 1:41 am
YOu are soo worthy!!!!! Praying hard for your boy!!!!!!! Hoping this works!!!!!
rhonda dudley
March 6th, 2010 at 2:37 am
Praying for Sam everyday….several times a day.
March 6th, 2010 at 3:11 am
We will say a few extra prayers for Sam and his AWESOME parents out here in MD.
Doug Plotner (Lindsey’s Dad)
March 6th, 2010 at 3:17 am
Margot and Neil…You are the most amazing parents I have ever met. You guys are awesome! Sam is right…you are the best parents in the world.
Sam…you are the TOUGHEST kid I know!!! Better yet, you are the toughest person I have ever met in my life.
You are in my prayers all of the time.
March 6th, 2010 at 3:22 am
Oh my goodness…so sorry for all Sam is going through but he is a trooper and so are you both! Angela (Madison’s Mom_
March 6th, 2010 at 5:31 am
We continue to keep Sam and your family in our prayers…. there is not a day we do not think and pray for Sam!
March 6th, 2010 at 6:04 am
Red and Margs..
There is a buddhist salutation which in the end means I Bow Down and it is used to honor someone in your midst who is worthy of acclaim and honor; someone who is literally a champion of compassion.
There isnt a soul alive who thinks that Sam could have any better parents than you and Redman.
And as for courage and spirit and pure drive – this is the only thing that I see as a positive result of neuroblastoma…each and every NB kid, damned at the start, fights with more courage, more spirit and remains more optimistic than any other kid is ever forced to. Neuroblastoma is like a flashlight that illuminates human tenacity.
Sam, Redman and Margo- I bow down to your strength and tenacity. I bow down to your compassion. You have risen to the fight and may it continue endlessly until Sam is free and playing kickball at recess.
I love you.
March 6th, 2010 at 2:22 pm
Perhaps with a name like samarium, it was designed with Sam in mind!
Scrabble rings such a bell! I would be right there in a minute if I wasn’t scared of being smacked down by my young friend.
One thing that Davis and Erin like to do, which is similar to scrabble but doesn’t need equipment is to think of dollar words.
a= 1 cent
b= 2 cents
c= 3 cents
etc.
Write them down so you can see them. Then you try to think of words that total to exactly one dollar.
Sam = 19+1+13 (33)
Hutchison = 8 +21+20+3+8+9=19+15+14 (117)
Let me know when you have found a dollar word.
Vickie
March 6th, 2010 at 4:45 pm
You are already the best parents ever, to all your boys! I’m thinking of your family and praying that Sam is better soon! I hope the new pain plan and oxygen make him feel better. Thanks for taking the time to update all of us who are praying for team SAM! God Bless You, Love, Ellen
http://www.caringbridge.org/ma/seanhanson
March 6th, 2010 at 5:21 pm
Just wanted to encourage you today with a link to Jay Bull’s blog.
Jay is a 15 year old who has had NB for most of his life, and is doing well in spite of the spots that still sit on his spine.
http://jays-journal.blogspot.com/
Hope you find encouragement here.
March 6th, 2010 at 11:32 pm
love you guys – miss seeing my (second) favorite redhead at school. Praying and sending love from 2 blocks away…
March 7th, 2010 at 12:25 am
Prayers for Sam & your whole family. He’s right: you are the best possible parents – to all your kids. Hope the Samarium (sounds like something out of Superman) therapy brings pain relief. What a super-team.
March 7th, 2010 at 12:59 am
I hope Sam is on the upswing and the cough subsides. Sending you positive thoughts for success with the new radiation treatment.
March 7th, 2010 at 1:57 am
Each time I comment,I say the same thing because honestly I am at a loss for words concerning the strength and compassion and love from your family. So once again I will say the same thing: You are in our thoughts and in our every prayer, each one of you. Sending good thoughts and even more prayers from NJ for Sam and continued success in this new treatment. I think it is safe to say that as parents, you put many of us to shame. Sam is in our thoughts.
March 7th, 2010 at 6:41 am
Never before were two parents and a child more worthy, more deserving or better suited to each other. You all are an inspiration and I hold Sam in my heart every day. Sending thoughts of strength, peace and love, Diane (Madeleine and Ricky’s Mom)
March 7th, 2010 at 12:06 pm
Hi Guys
We are friends with Uncle Paul and Cousin Marty in Australia. We hear such wonderful things about you all. Thinking about you all and just to let you know Marty is a pretty special person who makes our family smile as well!
Love to you all and thinking of you!
March 7th, 2010 at 7:51 pm
Hang in there. Hoping Sam will be feeling much better and you’ll be starting the new treatments soon. Wanted to send you a link to an inspirational song by a young cancer survivor–maybe you have seen it:
http://www.youtube.com/watch?v=sA8PaIw5gcE&feature=related
Sending you strength as you all “Swim for brighter days…” & hoping today is a bright ay for you.
March 7th, 2010 at 9:14 pm
Don’t ever question your parenting job as Sam’s parents… he stated it correctly! You two are the best! On so many different levels! Nick and I are constantly wondering how you manage, how you make even the worst days bright for Sam, how you can bring smiles to him amidst all of his pain… but you do!!! Day in and Day out and he feels it !!!! We are praying and wishing for less pain and more smiles! Prayers for Sam, and of course, all of the family!
Glad you had a great visit with your brother and young Marty!
Swim, swim, swim Sam! ( Maybe a good time to watch “Fnding Nemo” again! Remember the part when Dorie says, “keep swimming, keep swimming’ 😉 )
Love to all,
Colleen and family
March 7th, 2010 at 9:44 pm
“Bravo Zulu” You are the best parents I have ever known. Everyone in the Hutchison household is praying for Sam!
March 7th, 2010 at 11:20 pm
Margo and Neil:
Your blogs are so beautifully written and you are both an inspiration to all. We do pray and have had Sam on our prayer list at church. We are so happy that Paul and Marty were able to come and that Sam enjoyed their vist so much. Just know that you are constantly in our thoughts and we agree with Sam that “you are the best parents in the whole world.”
Wish we could be there to be more of a help.
Love all of you.
Anne and Don
March 8th, 2010 at 2:23 am
Yes, Redman and Margo…swim, just keep your head above water…
thinking david foster wallace and his great thought: this is water, this is water..
Sam, heres to playing scrabble with you this weekend; I know I havent a chance but I am resolute that when I fall down-I get back up.
Just like you. Fall down. Get Back Up.
Up, Sam…Rise up.
March 8th, 2010 at 10:08 pm
Go get-em Sam.
When you’re finished with the Percy Jackson series, the next series you may want to consider is the Mythomania books — the Greek myths as told by Hades (eg Zeus is a “big fat liar” and rewrote all the myths to make himself and his offspring look good). Jacob found the series hilarious and now Ben is reading them.
Perhaps you’re a demi-god?
Nancy
March 9th, 2010 at 3:34 am
hi SAM. hope 2 see u soon! guess what? tomorrow is our next spirit day at school and they changed the name from twin day to look alike day. what’s up with that? anyway back to the point. we all miss u around school. without u around, school can get very lonely. looking forward 2 having u back. i started baseball and games are saturdays if u want 2 watch. let me know which date will work. 🙂
March 9th, 2010 at 5:42 am
No truer words were spoken you two are the best parents, I look up to you and admire you both. You are all such a lovely family, and Sam you are a trooper (a handsome trooper with a lovely smile)
Sending you love and best wishes.
Wendy and Nick
March 9th, 2010 at 8:36 pm
Hi Neil,
Just wanted you to know that we are thinking about you here. I read the website when I can handle it, and, like Sam, I think you and Margo are the most amazing parents ever. I can’t imagine anyone fighting as hard as you do.
I’m keeping you all in my prayers…
Judi
March 11th, 2010 at 4:10 am
Hoping and praying that no news is good news.
March 11th, 2010 at 10:14 pm
“Best Parents in the World”
Friends have been saying that for years, but no, Neil & Margo won’t listen to grown ups. It’s gotta come from a kid! Smartest kid I know! Toughest too. Good on ya Sammy! 😉