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Neil and Sam Home Tonight
By Margot | November 18, 2009
Neil and Sam are coming home tonight at 10pm. They were scheduled to meet with Dr. Maris at 12:30 tomorrow but we have decided to do it by phone as Sam is not feeling all that well. The scan is better in some spots and worse in others.  Sam has shoulder pain now and has been taking vicodin today. The odd thing is that the shoulder doesn’t show much uptake in the scan. He’s also still having head and eye pain on and off and is sleeping quite a bit. Neil said he’s not eating much and threw up once today. I talked to him and asked him how he was doing and he said, “not that good right now.”  I just want to get my hands on him. I’ve just been sitting here today waiting for the phone to ring and pacing.  The good news is that the CT was totally clear so we still have no soft tissue disease. His platelets are 120 and all of his main blood numbers look good. LDH is 1800 which is not good news.  We’ll talk with all of our doctors tomorrow and get a game plan for moving forward.  We are batting around several ideas and will probably get something started tomorrow.
Margot
Topics: Progress Reports | 12 Comments »
November 18th, 2009 at 11:00 pm
I am so glad you will be able to wrap your loving arms around Sam and Neil tonight. I am happy for no soft tissue issues, and hope you can smack whatever else is showing up back to the stone age soon.
Be gentle with each other and keep Sam fans up to date as best you can.
Vickie
November 19th, 2009 at 12:39 am
Praying for you guys! Hang in there and be good to yourself right now. You guys are terrific parents to your boys!!! Angela (Madison’s Mom)
November 19th, 2009 at 2:27 am
Sounds like all your boys need you right now, Margot, and that you need to be with all of them in one place – seems like that’s when good things start to come together. Thanks for keeping us all updated. Thinking of you guys – Love, us
November 19th, 2009 at 2:40 am
I’m glad that they are coming home to you tonight!
Yay for no soft tissue disease.
And, I’m sure you’re going to have the perfect new plan tomorrow and will start kicking that other disease back!!!
Lara
November 19th, 2009 at 3:51 am
for some reason, you and your beautiful boy have been on my mind so much lately. I’m praying. AND PRAYING. Love you and am always here if you need any help. xoxo S
November 19th, 2009 at 5:07 am
Margot, thanks for keeping us updated. We’ll be thinking of Neil and Sammy as they fly over Pittsburgh. Your motherly love can only do good things for Sammy. We pray for your family and Sammy every night. All our love, Nick
November 19th, 2009 at 11:16 am
Hugs all the way around.
November 19th, 2009 at 1:59 pm
Not the trip we all wanted to hear about but glad for no soft-tissue disease. Neil will figure this out. Thinking of you guys and glad your oldest boys are home.
Andy
November 19th, 2009 at 5:21 pm
Praying fervently for you all.
My heart aches so much for all that Sam endures.
Praying for answers and miracles.
LOVE TO YOU ALL
November 19th, 2009 at 7:02 pm
I know all too well how difficult it is to figure out the right plan, but I know you will and it will be the right one. Thinking of you guys & praying for you always.
Love,
Silvia
November 19th, 2009 at 9:51 pm
Keeping you in my thoughts and prayers. Lots of love from Germany!
November 20th, 2009 at 2:41 am
Saying many prayers and sending all the best thoughts your way. When you are all back together tonight, everything will look brighter. Sam has made his way into my heart as I know he has with everyone else who only knows him through these wonderful journal entries. I would be remiss if I did not add, so has Andy and Charlie. Your beautiful family is always being thought of here in NJ.