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Bad News
By Margot | May 15, 2008
I am muddled so this may not make much sense. Sam woke up Monday night with arm pain in his upper left arm. One dose of Tylenol didn’t do the trick and he only went back to sleep after a second dose and a lot of holding his arm in pain. I knew it was disease, there was just no rationalizing anything else. Tuesday he was ok all day but again at night needed two doses of Tylenol before bed. Wednesday he woke up asking for Tylenol and has been asking for it frequently ever since.  This morning’s double dose before the scan did nothing to help the pain so on my way to the scan I stopped Dr. Kim in the hall and told her that I thought we would need something stronger to get him through the scan, she doubled back with us to the clinic and Jess went to work on getting us some Vicodin. Neil met us right about the time I completely fell apart and ran out sobbing into the hall.  I just knew the scan was going to be bad. Neil carried Sammy to the scan while I pulled myself together and I met them in Nuc. Med.  There is a spot on his arm – no surprise, two spots on his right leg and a spot on his left leg (or vice versa). We thought we might have seen uptake in the skull but the wet read from Dr. Harvey was that the skull was clear. He thought that the spots were the same very vague possible spots that were on the last scan but that the last scan was tough to read because the machine broke half way through and the 48 hour read differed from the 24 hour read - but in looking back to the October scan there is no doubt that we have progressed from there – perhaps not much since the last scan -but then we thought there wasn’t any progression in the last scan. Are you confused? Me too. We should have a final read tomorrow.  We are starting radiation next week and need to come up with a plan. The low dose of Vicodin that we got at the hospital didn’t help much for Sam’s arm pain so Dr. Willert upped the dose and he is feeling better now. He threw up this morning and on the way home from the hospital.  Ugh.
I’ll post when we have a plan.  Our friend Erin Buenger progressed this week also – this damn damn disease. (Erin’s mother actually coined the term “scanxiety” -well warranted this week).  So much for my caveat.
 Will post as I have more details.
 MargotÂ
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Topics: Progress Reports | 14 Comments »
May 15th, 2008 at 8:57 pm
I’m sorry to hear that.
May 15th, 2008 at 9:17 pm
Margot,
I truly feel your pain. I am with you and will help you guys in any way I can. Hang in there.
John London
May 15th, 2008 at 9:51 pm
Praying for you, Sam…and for all of you.
Sandi Queen (Jeremiah’s mommy)
http://www.caringbridge.org/pa/jeremiah
May 15th, 2008 at 10:52 pm
Oh I want to screeeeeeeeeam! This is just so wrong on many levels. I hate pain in children. I hate making the decision about what to do next. I hate scheduling life around treatment.
On the other hand I love the Hutchisons. Hang in there, and we will all be hitting the ground running soon, just like Sam last week.
VB
erinbuenger.blogspot.com
May 15th, 2008 at 11:12 pm
Sick sick sick sick! I am so sorry Neil and Margot. You could not be more prayed for or more loved…I hate that you must walk through this horror.
God help us all.
May 16th, 2008 at 12:05 am
Oh how I hate this bloody disease!!!!! I am praying really hard for sweet Sam right now… You guys have helped us soo much.. I now wish there were something that I could do to help you…
I will do the only thing that I can though and keep praying…
love
rhonda dudley
http://www.caringbridge.org/tn/sydneymarie
May 16th, 2008 at 12:50 am
damn. damn. damn!!!!!
i’m so sorry to hear about sam. many hugs to him and your family. thinking about you all the time.
deb
May 16th, 2008 at 3:22 am
we read your site all the time and were very sad to read today’s entry. we will continue to pray and send positive energy to you all. we wish we could do more.
the ventresca family
May 16th, 2008 at 4:15 pm
F word. You guys are in my thoughts and prayers. If there is anything Ed & I can do for you and Neil, please let us know. We are pulling for all of you so hang in there!
May 16th, 2008 at 6:10 pm
Neil & Margot-
F word is right. Im so sorry to hear that there is progression and that Sam is in pain. I hope you get a plan together soon. Ugh. So sorry. I know there is not much I can do to help but if there are any little things that will make some space on your plate with MWP or anythign I can do to save you a few hours here and there, please let me know. I’ll do whatever I can.
Carrie Palmer
May 16th, 2008 at 6:13 pm
SO very sorry to hear the latest news…something big has to happen soon with all the work that Magic Water is doing. There are far too many families suffering right now. You are all in my prayers…hang in there and never give up. I wish I had better words to say.
May 16th, 2008 at 10:55 pm
Daniel and I were so sorry to hear about the progression. It seems so impossible to understand and just breaks my heart. I’ve never even met Sam but have his photo with Max and Tony on my screensaver so I do see him everyday! 🙂 And more importantly, I do pray for him everyday. Hoping a plan will get you back to NED and at least Cloud 7, if not 9.
May 17th, 2008 at 12:42 am
I am so, so sorry to read this news. My heart is with you. You are all my heroes. Jan
May 18th, 2008 at 12:11 am
Margot,
I watch Sam everyday as he and his friends go to class!
He has been looking so good…and so happy.
He is such a strong and brave boy!
You and your family are ALWAYS in my thoughts and prayers!