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Yesterday Sucked but today is better
By Margot | February 18, 2010
We are working on getting Sam discharged. He spent a couple of days in the ICU because his sodium levels were dropping and the only place to get highly salienated fluids is in the ICU. It made us really appreciate the Hem/Onc ward though we did have one rock star nurse who was great. Not our Sheila The Great but pretty great. Mostly it was a lot of no sleep. Sam’s leg and back pain have gotten much worse in the past few days and we are back on a pain pump. He hit the button several times yesterday because of various tests going on but hasn’t hit it but once todaytoday during radiation. We upped the dose of the oxycontin to 25 something or others morning and night. His eye has been bothering him with the light and then in the ICU he started to complain that he couldn’t see the TV to watch the Olympics.  I gave him a menu to read and he couldn’t read it. Neil and I asked for an opthomolgy consult yesterday when we got back to the hem/onc ward once Sam’s sodium had stabilized.  They requested that we come to them which we did but it was a major effort to get Sam from the bed to the wheel chair and get him comfortable. Anyway, to make a long story short, the opthomology appointment brought me to my knees. Sam sat on my lap and tried with his left eye covered to read any of the superlarge letters on the wall. Not one.  She gave him a card to read right up in front of his eyes, couldn’t read any of them. The only thing he could do with his right eye was tell her how many fingers she was holding up right in front of his eyes. I was shaky and sick and angry that this nasty disease is taking his eyesight too.  His left eye is fine for which I should be thankful but I felt like someone was tearing my insides out watching him struggle to read those letters.  The endocrynologist asked that we do a brain MRI to see if it could give us any clues as to why his body is wasting salt so we did that last evening.  The results are pretty much the same, he has disease in his skull and in the dura lining of the brain but no masses inside the brain which is good. The salt wasting is probably related to the liver and the radiation.   Anyway, his sodium levels are rising so that’s a good sign. Though moving Sam from the bed to the wheelchair to the MRI exam table was exruciating, he fell asleep on the table, we had timed the benadryll right and yet another tech told me what a great kid he was.  So while I am ranting and cursing this damn disease I might as well throw in the fact that I don’t want him to be a champ at all this crap. In the ICU during shift change when the day nurse was filling in the night nurse on Sam’s case I overheard her say, “this kid is awesome, he takes two, three pills at a time no problem.” Then we went to radiation and the techs there told us again what a pleasure he is to have and how well he does and the ambulance drivers said he was great.  And then we did the opthamology appointment and the MRI and an ultrasound to check the fluid in his belly and as he struggled to get from chair to table and everyone told me what a great kid Sam is, I wanted to hit something. I know, it’s not like I want someone to say, “Wow, your child is a monster!” It’s just that I want him to be out on that soccer field and on the field trips and in his classroom – all of the places he wants to be.
So the next best thing is to get him home where he also wants to be. Dr. Willert thinks maybe tonight or at the latest tomorrow if we can set up all of the home meds.  On a good note, his liver is definitely shrinking so he’s responding to radiation.  Here’s hoping his skull will respond as well.  He actually wants to do radiation because he says it works. The mask on his face doesn’t even phase him now.
He and I are on the third Percy Jackson book now and he really likes the series. All of my Greek mythology is coming back to me since the books are based on the Greek myths. We’ve been playing blokus and scrabble and Neil brought Andy and Charlie up last night and we all played scrabble and watched Sean White.  Â
I’ll let you know when we get out.
Margot
Topics: Progress Reports | 22 Comments »
February 18th, 2010 at 11:18 pm
Thinking of you and sending all my best wishes from Germany.
February 18th, 2010 at 11:22 pm
Love you guys. Yes, it sucks – more than anything else I’ve ever known. Can’t begin to imagine. Just a reminder from an outsider, Sam is a champ at a million other things beyond taking the hospital crap — he’s a champ at friendship, fun, soccer, football, basketball, brotherhood, art, reading, and so much more…hope you all get back home soon and can read “Percy Jackson” together. We’re reading it at night too – thinking of you guys. Love, us
February 19th, 2010 at 12:45 am
Margot, I understand completely….we just long for our kids to be “normal”…I’m hating this for ya but soo happy to hear that he seems to be responding to radiation….
keep doing what you’re doing!! you guys are amazing!!!!!!!
rhonda dudley
February 19th, 2010 at 12:59 am
Hard to read. Heard about it before I read it and still I cried.
This little kids mind is so sharp, he so wants to be in the game, he accepts his burden without question.
Sean White has nothing on Sam Hutchison.
February 19th, 2010 at 1:53 am
I’m so sorry things are so hard. I know it really stinks to want life to be “normal,” and to see everyone around you going on with their lives while you are in the hospital and your child is struggling with cancer. It stinks – plain and simple. There simply are no words to sugar coat it.
Know that we continue to pray for all of you daily – especially Sam – who, though we’ve never met in person, I have no question deserves an Olympic medal of his own – a gold medal in the sport of life.
February 19th, 2010 at 2:25 am
Non-stop prayers from Ludwinski Camp–
I love you all more than I can ever say–
Sam is the most loved ever EVER–
And I hate this !@#$%%^ disease more than words express–
Margot and Neil–all my love,
Donna
February 19th, 2010 at 2:39 am
Always keeping Sam in my prayers. Hoping you will be home soon.
February 19th, 2010 at 3:06 am
can i just say…my heart aches and this disease fucking sucks. so sad to hear about sam’s pain and eyesight.
much love and many hugs to all of you. wish i could give you hugs in person, but know that i think about you guys throughout every day.
i WILL see you guys in march. photos? yes!! 15th-18th.
thoughts and prayers for your family…always.
deb
February 19th, 2010 at 3:35 am
We understand and share your sadness and RAGE. We wish Sam did not have to be a seasoned pro in the hospital. Although Sam has given you so much to be proud of it, it sucks that the hospital and cancer occupy so much of his precious time and energy. I hope you get through the WHOLE Percy Jackson series- and more. Zach and another warrior we know never got to finish the second book. It made start to think our kids should just avoid that series…. Wish we could do more to help your family. Let us know if there is anything we can do. We would love to order a gift certificate to a favorite local restaurant. We feel for you. It is hard to hold it together in front of the kids when you receive crushing news, and to continue finding the best in each day when your heart and spirits are broken. We’re sending you strength, and praying for good family time together soon.
February 19th, 2010 at 4:16 am
Keeping you all close in our prayers!
February 19th, 2010 at 4:25 am
Liver shrinkage? Though the rest of the 99% sucks, that’s good news, really good news. You said it Margot, hoping that the rest responds to the therapy he’s getting/will get. Love and prayers from all of us.
February 19th, 2010 at 5:10 am
Lots of Loving thoughts coming your way. Hope you are all in your own beds soon. so so sorry that you are going through all of this. Angela (Madison’s Mom)
February 19th, 2010 at 5:20 am
I wish there were some magic words to help. I’m thinking about you all.
February 19th, 2010 at 1:43 pm
Sending lots of love and positive thoughts from our family to yours. Hope you guys are all home soon.
Love,
Jen
February 19th, 2010 at 3:10 pm
My heart breaks for you. Hoping all of you, especially Sam, get some respite from the pain and misery. “It sucks” seems too tame to cover it…. To quote ET, “HOME. HOME. HOME.”
February 19th, 2010 at 3:26 pm
I read this board religiously and I have such great respect for Neil and Margo and every other parent who picks up what is left of their child and marches into the Drs office only to hear disappointing news.
The human condition is represented by this board and it is spelled compassion.
Have courage and faith Red and Margs.
February 19th, 2010 at 3:27 pm
I’m thinking of you & your family and saying many prayers for all of you!! (Sam’s audiologist from school).
February 19th, 2010 at 3:53 pm
I absolutely HATE this disease. The rage you feel at hearing how wonderful he is at handling the unthinkable at any age let alone as a child is so warranted. Margot you are an amazing mom and Neil is an amazing Dad. The two of you and Andy and Charlie are exactly what the doctor ordered. Praying for you all to get out of there sooner rather than later. Sending you all tons of luv and hugs.
Love
Abra
February 19th, 2010 at 6:14 pm
Sam is in my thoughts every day. Praying for a break for you and for more smiles.
February 20th, 2010 at 1:37 am
Your entire family’s strength continues to awe and move me. I have no doubt that the immense love that surrounds Sam empowers his treatment. I hope you’re all at home together very soon!
Lots of love from your old neighbor,
Deborah
February 20th, 2010 at 2:12 am
wow, such unsettling news for you and yet, after your anger … you are able to look to the positive and think about home ! 😉 That is where Sam gets it… from you and Neil!!! Keep thinking of the good, even if you have to struggle to find it… Sam was terrified of the mask at first and now it doesn’t faze him! We continually hope for strength and courage for all of you, but yes, you have already become true champions to all of us! Prayers and much love,
Colleen and crew
February 23rd, 2010 at 7:22 pm
I don’t comment very often, but, I had to let you know Sam is in my prayers, all of you are.
I also wanted to say must be something about MRI’s and people named Sam. I actually fell asleep while getting a MRI a few years ago. That banging didn’t bother my sleep a bit.
Sending hugs to my favorite Sam!
Sammie (girl, well actually mom to Josh)