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Hard
By Margot | January 17, 2010
We have had a hard couple of days. Sam had an awful night on Thursday night with abdominal pain and leg and arm and rib pain. We admitted him on Friday morning and he is on a pain pump. Once he got the pain pump going he was able to eat and play chess and happily listen to a lot of The Goblet of Fire. Last night he was uncomfortable again and he and I were up quite a bit of the night pressing the pain button, getting extra boluses from the nurses and trying to get him comfortable and unsweaty. He ran a fever of 102 and so the nurse and I put ice packs in pillow cases all around him and rubbed him down with cold wash cloths both of which made him feel better.  We upped the continuous medication this morning and he is doing a bit better today. His legs are very bad and it was evident in the scan why. His knees and the area just above and below them are full of disease. The rest of the bony disease did not look as bad as we thought it would be.  It looked better than the Philadelphia scans in terms of his thighs, pelvis and upper arms, they seemed pretty clear in this scan, though there are spots on the shoulders, one on the chest and one on the pelvis from what I could see.  The very bad news is that it  looks at though there is liver involvement but we don’t know the extent of it yet- haven’t received the final report. He is doing a CT scan now with Neil to confirm. They let the boys in for a visit today and they all played video games. Sam’s right eye is swollen again and so he was trying to play by squinting out of one eye but was game to do it as usual. We played some Trivial Pursuit Junior and then Charlie and Andy got a bit loud and Sam lost his patience. Neil took them to Dave and Busters for a while to do something fun with them. After they left Sam beat me at chess.  We had a conference call with Dr. Willert, Dr. Roberts, Dr. Sholler and Dr. Durden this morning and after discussing options we decided to start Doxitaxil (I think) and velcade today. Shelia hung it about 4pm. Dr. Sholler is working on testing different agents with Sam’s cell line. Fortunately or unfortunately his cells are growing beautifully.  We are so lucky to have her in our corner. We are grateful to our team for their time this morning.  We will be doing emergency radiation to Sam’s knees tomorrow to try and help him out of pain. He is getting platelets later tonight as his platelets were 13 today. He has stem cells in reserve if we need them.   He is generally not in good shape but has been so sweet and happy once his pain has been under control. It was 5 am this morning after we’d been up every hour or so together and I heard Sam out of the blue say, “Mom, what exactly is a hurricane?” It cracked me up since most of our conversations had involved where it hurt and how to solve it.   He also when he finally got comfortable said, “Goodnight, Mom, can you please wake me up early enough to finish watching the movie with you tomorrow?” It was funny because it was 5:30 in the morning and he was so sweetly saying goodnight.Â
Neil and I have been through the wringer and are pretty emotionally spent but are better and more optimistic today since Sam’s pain seems a bit better.  Thanks to everyone and I’m sorry to have waited until today for the update.  My Dad and Stephanie are coming in on Monday to help out since we will probably be in the hospital for a while.
Margot
Topics: Progress Reports | 47 Comments »
January 17th, 2010 at 4:59 am
We are still thinking of you guys and praying for Sam tonight as we go to bed!
January 17th, 2010 at 5:02 am
Sweet, sweet, Sam. Strong, Strong, Margot. Good that the pain seems to be more under control. Hard to post, I’m sure, but we’re all grateful to know what’s happening. Must have felt good to finally have the brothers together, even if for a brief time. Glad your dad will arrive soon. New fiction will be in your hands tomorrow – I know you need some new material and I’ll bring it by. Lots of love and prayers, Lisa
January 17th, 2010 at 7:19 am
Saying extra prayers for Sam and keeping him very close in my thoughts and in my heart. I will never understand how someone I have never met has profoundly touched my life, but I will be ever grateful that it is Sam and his amazing family. All I can offer is my thoughts and prayers along with the belief that this is a bump in the road and Sam will be playing basketball and baseball before we know it. Keeping all the Hutchinsons in my thoughts and prayers everyday…
January 17th, 2010 at 12:08 pm
I am praying Sam gets some relief. David and/or I am able to come and help with Charlie and Andy if you need us. Love and prayers for all of you
January 17th, 2010 at 3:31 pm
we continue to pray and send positive thoughts your way. thanks for keeping us posted. keep reading the harry potter books – we just finished the 7th – it will keep you busy! love to you all.
January 17th, 2010 at 3:32 pm
Margo, whatever good thoughts I can possibly send have been winging their way west across the country to all of you.
January 17th, 2010 at 3:39 pm
Praying for no pain for Sam and some rest and strength for you. Wishing I could do something to help out.
January 17th, 2010 at 3:51 pm
Sending big strong chi for the Hutchison family, most of all, Sam.
January 17th, 2010 at 3:52 pm
Praying things will turn around soon.
Lara
January 17th, 2010 at 3:53 pm
Margot and Neil – pain in your child is the worst thing ever to have to deal with. We had a night like that with Max once and I thought Andy & I might strangle one another. I’m so glad to hear that you’ve got Sholler and Durden working for Sam as you couldn’t ask for better support. I’m also glad the hospital let the boys into see Sam! Wow – how’d you break them through the lock-down? I’m sure the distraction was great for a little while. Please call anytime to vent. Sometimes blowing off some steam can get you through another day! I’m a good listener. Thinking of all of you all the time.
January 17th, 2010 at 7:27 pm
Know that we continue to pray for Sam (and for all of you, as we have been through the “childhood cancer journey” and know the stress on the rest of the family) daily.
January 17th, 2010 at 8:27 pm
Margot,
I talked with Neil Friday night and let him know that we are “in your corner”. Anything you need – we are close by. Christie went to church this morning and I know she put in a special request for Sam. Of course, I’m not much for synagogue…but I will do WHATEVER it takes!
January 18th, 2010 at 12:16 am
I am praying for you all!!
xo
January 18th, 2010 at 12:25 am
So sorry that you all have to go through this…it really sucks! lOTS OF PRAYERS… Angela (Madison’s Mom)
January 18th, 2010 at 12:38 am
sending positive thoughts … and tons of prayers!!!
glad to hear re-enforcement is on the way ! Tell your father hello !
Love,
Colleen
January 18th, 2010 at 1:35 am
I can’t imagine all that you are going through. Please give the boys a huge hug. If there is anything I can do, please call. I’m praying you all of you,
Lori
January 18th, 2010 at 5:31 am
Storming the heavens….. Please know we hold the entire family close in healing thought and prayer….
January 18th, 2010 at 1:22 pm
Thinking of you guys all the time.
January 18th, 2010 at 5:54 pm
I know Sam will do another 180 real soon and you’ll be chasing him up and down. Thinking of you.
January 18th, 2010 at 6:10 pm
You are in my thoughts and prayers everyday. Stay strong.
Max’s Nana
January 18th, 2010 at 7:06 pm
Hoping and praying for better days ahead. <3
January 18th, 2010 at 7:48 pm
It’s my birthday tomorrow. My birthday wish will be for Sam to feel better.
January 19th, 2010 at 4:03 am
Please know you are in my prayers. As with Melissa and Andy I continue to be amazed at your courage and determination. May God’s comfort and strength be your continual companion. (Max’s Annee Rannee)
January 19th, 2010 at 2:35 pm
Hey Guys –
Just letting you know I’m thinking of Sam today. Hoping he has a good day!
Lara Weberling
January 19th, 2010 at 3:22 pm
Thinking of you all.
January 19th, 2010 at 7:01 pm
Hutchinson Fam, We are continually praying for and thinking of you way over here in Minnesota, the frozen tundra of the states I’ve been told, and can feel as well. We too feel very fortunate to have Dr. Sholler in our corner, such compassion for the kids, remarkable. Praying for better pain free days for Sam and that he may be soon playing with his brothers.
The Olsens,
Justin,Jodie,Brenna, Jordyn and London
January 19th, 2010 at 7:45 pm
Checking the blog frequently, like the compulsive person I am, hoping for news of Sam. Thinking of all of you even more often than that.
Vickie
January 20th, 2010 at 12:09 am
Margs, Red, Kids and Sam. So happy to hear that Sam feels somewhat better and is swinging for the fence..must be the power of prayer, the love of Mom, the fierceness of Dad and Andy and Charlies focus on getting Sam home.
Swing for the fence.
T
January 20th, 2010 at 12:40 am
You have my prayers .glad you are feeling a little better today. I know your grandparents and they have kept us posted. I just wanted you to know that God us taking care of you. GOd love you.
January 20th, 2010 at 3:21 am
Keeping you in my thoughts and praying for you always!
January 20th, 2010 at 3:24 am
update please! am thinking about you constantly!
January 20th, 2010 at 3:29 am
Just talked to Neil and this is the 5th anniversary of Sam’s diagnosis. Back then, Sam was given an unknown time to live but it was thought to be much less than 5 years. Neil and Margot have turned over every rock looking for a cure..looking for time. They were assisted along the way by great friends and family and many researchers..but mostly by young kids who fell down before an adequate treatment could be found…Neil knows just about every parent who is similarly positioned like he and Margot…they all share information freely…everyone knows that they are in the same boat….sinking and rowing like hell while the other parent bails water.
So tonight, the battle is on hold while Neil and Margot spend time with Sam..who is still fighting as hard as the day he was diagnosed…he is off the morphine pump, drawing art and now walking freely..
Tomorrow, Redman and Margo start rowing like hell again, trying to bail enough water so that there boat stays afloat…
Hug everyone you know…Sam made it 5 full years!
January 20th, 2010 at 5:08 am
Margot, Neil and boys
We are always thinking of you, much love to you all.
Michelle, Colin, Darcy and Van French
Kinglake, Australia
(Paul & Kari’s friends)
January 20th, 2010 at 10:02 am
Went to the Western Wall in Jerusalem last week and put Sam’s name on a piece of paper and put it in a crack in the wall and said a prayer. Will be at the wall again this week and will pray again. My thoughts are with you all – and I totally believe in the health community to work wonders.
January 20th, 2010 at 1:49 pm
My heart is full for your entire family. No one could fight more, do more, love more. Peace be with you. Jan
January 20th, 2010 at 3:01 pm
Would love to reach out and hug you all. Margot, would you please give Sam a hug for me and tell him that I’m in his corner. I’m praying for better, brighter days ahead. I want to imagine smiles on all your faces. I love you all.
January 20th, 2010 at 3:24 pm
Thinking good thoughts for Sam and the family. Hang tough.
January 20th, 2010 at 6:38 pm
Wonderful to hear that Sam’s pain has subsided and that he is walking; his courage and tenacity are an inspiration beyond measure. We love and miss you and are always here for you in whatever capacity you may need. Amelia sends big hugs to her little buddy, us too.
Vicki, Billy and Amelia (Mimi)
January 20th, 2010 at 8:50 pm
You are all always in our thoughts and prayers.
January 20th, 2010 at 8:56 pm
Dear Hutchison family,
Sam is always in our prayers and now more than ever! He’s an amazing boy who has touched a lot of hearts!
Lots of love from
Victoria, Hector and Edgar in Sweden
January 20th, 2010 at 11:13 pm
thanks for the update, Tom. We are so grateful Sam, Neil and
Margot have you and all the family in their corner… constantly throwing out life jackets or rafts whenever they need extra help. Your support and love has helped them tremendously.
From afar, we pray and send all our loving wishes for many more anniversary celebrations in the years to come !
Love to all the Hutchison’s!
Colleen, Nick, and family
January 20th, 2010 at 11:15 pm
thinking, hoping, wishing, believing, praying for you guys. wishing you much strength. wish i was there. love and hugs, deb
January 20th, 2010 at 11:41 pm
You’re in our thoughts. Lili is looking forward to her first Tea Party with Sam. Give us a call if we can do anything for you.
Artie, Jen and Liliana
January 20th, 2010 at 11:46 pm
We can’t wait for Sam to get home and run around the complex playing with his brothers. We all love to hear them playing, laughing and having fun. Your family is truly the example of what we all strive for. A family full of love, compassion and never ending devotion to each other. Margo and Neil please know we are all uplifted by the examples you have set for us. I’m at 1773 if you need anything. Keeping good thoughts. Lois
January 20th, 2010 at 11:46 pm
Sam, we’re all thinking about you at school and sending you our positive thoughts. We miss you so much!
Margo & Neil, I wish I could do something to help with your pain and Sam’s. We love your family and wish you all the strength in the world.
January 21st, 2010 at 1:21 am
Sam is such an incredible boy….such a fighter. We really do miss his smiling face here at school!
Your family’s strength and courage continues to amaze me.
Please know, that you are in all of our thoughts and prayers!
January 23rd, 2010 at 2:58 am
Margot & Neil,
I’ll be thinking of Sammie The Bull and praying for him.
Marco