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Here in Philly

Friday, August 21st, 2009

It’s 6am Philly time.  I came in yesterday around 5pm and feel much better being here.  Thank you Lisa B. for waking up at 4 in the morning to take me to the airport.  I couldn’t stand the thought of me getting here and Sam already in isolation.  I was able to sleep next to him […]

The New Plan

Wednesday, August 19th, 2009

I probably shouldn’t write this now as there are tears streaming down my face and things will look brighter surely in a few days.   They are admitting Sam for pain today and we will do regular MIBG starting on Friday.  His pain is disease progresssion.  The result of his bone marrow biopsy from last week showed […]

Sam’s arm probably not broken

Tuesday, August 18th, 2009

So,  the radiology team at CHOP doesn’t think Sam’s arm is broken and the head of radiology looked at the x-ray.  So I’m not going to post too much here as I may have a new or different story shortly but the pain in Sam’s arm isn’t anywhere near where SD thought they saw a […]

Holy Crap!

Tuesday, August 18th, 2009

Well I was in the middle of a post telling you that Sam was having severe arm pain for the last two nights and that we were talking  with Dr. Maris about whether or not we needed to regular MIBG starting this Friday.  I don’t need to say we’ve had a sick feeling  and no sleep for […]

On the Way.

Wednesday, August 12th, 2009

I dropped Neil and Sam off at the airport this morning at 5:15am.  We left a little more time today for the 6:30 flight and Neil said the security line was still bad but they were fine as they didn’t have any bags to check and had their boarding passes.  Charlie came with me because he […]

“I Just Look That Wave in the Eye and Say ‘Hey Bud, Let’s party.” – Jeff Spicoli

Monday, August 10th, 2009

Sam, Andy and Joe Surfer Dudes All three standing up Charlie’s version   Sam received a surf lesson  for two from Joe for his birthday.   We added Andy and he and Joe and Andy took the lesson on Friday and they had the best time.  With 15 minutes to go in the hour and a half lesson  I […]

A Guest Post

Sunday, August 2nd, 2009

My dear friend John London and I have a running joke — I always tell him that I feel that I am the luckiest man in the world.  I tell him “But John.  I have 3 beautiful little boys and a wonderful wife.  How could I be more blessed?”    And then he always chimes […]

Summer

Wednesday, July 29th, 2009

This week has finally felt like summer for all of us.  Sam’s leg pain seems to have dissapeared.  He went to basketball practice on Monday night, did a waterballoon fight on Sunday and did tennis yesterday.   All of this has been interspersed with a lot of swimming.    Counts seem to be holding up all right. ANC […]

Hangin’ with Sam

Wednesday, July 22nd, 2009

Sam and Andy playing Wii -taken on my cell We are on day three of Topo/Cytox.  So far not too many ill effects.  Neil is bringing Sam in around 7:30 in the morning and I’ve been coming in around 9:15 after dropping off Andy and then Neil goes to work. After the first day getting everything started and […]

CHOP/Philly/Home/The Plan

Friday, July 17th, 2009

We are home now. Got home last night around 8. We had a good meeting with Dr. Maris and Diane Baniewicz and left with a lot of hope for the new trials just started and some things around the corner that we will aim for.  We are going to do the Ultratrace MIBG treatment. We are […]

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