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Good News/Bad News
By Margot | August 24, 2009
So the good news is that Sam’s radiation level is at 4.3 and if we didn’t have any other issues we would be out of here today after the scan. The bad news is that Sam’s leg pain seems to be worse, he spiked a fever last night and his stomach is really screwed up. He’s throwing up and complaining of stomach pain. Since he was already nauseous and we put him on antibiotics for the fever, he’s not keeping much down despite zofran, ativan and benedryl combination. It makes it hard to give him his meds because he keeps throwing them up. We did take the catheter out which wasn’t a very big deal to do. He hasn’t spiked a fever since the one last night so that’s good. His counts are good ANC 7000 , Platelets 162, Red 9.5 So counts are good. Now we just need to get his pain under control, get him to eat and poop and not spike another fever and all will be well. Yesterday I thought he was getting better but now we are back where we were. The good news is that his arm which is what was initially causing him pain is not hurting anymore and he’s using it.
Best case scenario would be that Sam’s pain starts to get better this afternoon, tomorrow we try to start weaning him back so can get to pain control by mouth. Less IV stuff may help the nausea and if he doesn’t spike a fever we can think about going home.
Sam when he’s awake and not in pain is getting pretty bored. We started a puzzle together this morning 500 pieces so maybe that will help keep us occupied. I’ll keep you posted on how things look later today or tomorrow.
In stark contrast, Andy and Charlie are at Legoland and just called me saying they are having a ball. Charlie got on the phone and said, “I’m going again Mom!” He actually called and talked to me yesterday afternoon so that was good.
Margot
Topics: Progress Reports | 10 Comments »
August 24th, 2009 at 7:10 pm
Good news on the radiation and catheter fronts! Does that mean you can switch rooms? Get hearing aids back? Just thoughts to cross my fingers for!
I’m going with your tumor kill theory on pain, and it sounds like it’s doing a pretty great job.
Hang in there!!!
Lara
August 24th, 2009 at 7:40 pm
praying VERY VERY hard for tumor kill…praying for all of you…
August 24th, 2009 at 8:44 pm
Happy to know that the arm is better – seems the leg should follow suit. It MUST be the treatment at work. I know that you, Margot, are a wondrous part of Sam’s pain management . You’re doing such a good job getting him through this. Sending positive thoughts for leg comfort and soothed tummy. Thanks for keeping the updates coming as we’re all anxious for news. – Lisa
August 24th, 2009 at 9:13 pm
I have the same question that Lara has. With lower levels of radiation, can you get out from behind the lead and get in a little snuggling or at least more direct entertainment possibilities?
I am ready to read your next post, when the steps you outlined become a reality and you out of there.
VB
August 24th, 2009 at 11:35 pm
Keeping Sam the trooper in our constant thoughts and prayers and hoping you can continue to come up with activities and puzzles so the little guy doesn’t get too bored!!
We are praying and hoping that Sam’s belly and leg pains subside.
-Dina
August 25th, 2009 at 2:48 am
Hi Margot,
Glad to know that it is not all bad news ! Lets keep focusing on the positive… you and Neil do that so well ! 😉 You keep Sam’s dreams alive and inspire him daily… he feels it and responds!
Praying daily for no pain, good numbers, and release from CHOP asap !!! I think his soccer cletes are waiting for him in San Diego ! Love and hugs, the Kuhn’s
August 25th, 2009 at 5:03 am
Hoping for more good news from you soon!!! Hoping the pain will soon be a thing of the past and you can resume the life you love.
We are pulling for you and Sam!!
Anne & Kent White
August 25th, 2009 at 6:59 pm
Hi Margot and Sam,
We miss you both and are awaiting the news that Sam is pain free and on the way home. Mimi got a new PS3 for her birthday and can’t wait to play it with Sam. Sending healing thoughts and wishes your way.
Love,
Vicki, Bill and Mimi
August 26th, 2009 at 3:21 am
I am praying that Sam’s pain is under control, that he will eat and poop soon and not spike another fever!
You are such an amazing family. I feel so blessed to know every one of you!
♥Heather
August 27th, 2009 at 10:17 pm
I just want to let you know that I’m thinking of you.