Archive for January, 2009


Sunday, January 25th, 2009

We are off to Hawaii tomorrow.   We are all excited.   Sorry not to have updated in a few days.   I always think of my grandmother,  Owie, who used to tell stories of my Dad as a navy pilot when he would call her the night before he had to fly a tough, dangerous maneuver like […]

Four Years

Monday, January 19th, 2009

 Sam in the hospital shortly after diagnosis 4 1/2 New Pics from the amazing Deb Schwedhelm   Four years ago today our life did a free fall into the world of cancer.  We spent the next several months in a daze trying to adjust to what cancer families call “the new normal.”  We were interviewed […]

Day Three Down

Thursday, January 15th, 2009

We have been getting home from the hospital every day at around 2pm which is very nice considering that when we did Topo/cytox the last time it was a ten to twelve hour day every day.   The dose is lower than it was but we’ve added Velcade on day 1, 4 and 8.   The three chemos […]

Lunch Recess

Monday, January 12th, 2009

Neil took Sam to his last radiation appointment this morning and then he went to school until I picked him up for the dentist at 10:30.   He needed to have his cavities filled before starting chemo.  Dr. Scoma gave him laughing gas but it didn’t seem to help and it was long and uncomfortable and […]

The Gameplan

Monday, January 12th, 2009

(written by Neil and Margot)  For those keeping score, we are planning on topotecan, cytoxan, and velcade.  We will do a few cycles and plan on it being the entre’ to MSKCC in New York City for the 3F8 antibody therapy.    We are still hoping to go to Hawaii though will postpone it by a week […]


Saturday, January 10th, 2009

I guess if you look on the bright side, there was no ambiguity.  We won’t spend the weekend wondering.  NB is having a field day in Sam’s bones.   There are several new spots.  Left leg has 4 spots total, two up near the hip area, one above the knee and one below, right leg has […]

Going into Scan with Crappy Numbers

Thursday, January 8th, 2009

Monday’s VMA: 42.4  HVA 44.7   Crap. Crap. Crap.   Sam is still feeling pretty well, though off and on has mentioned pain in a spot on the back of his head.    He’s also been a little sleepier than usual but then we are getting him ridiculously early for radiation so, factors, factors, how many factors  can I come […]

Football and Rock Stars

Sunday, January 4th, 2009

At the Wild Animal Park- Charlie is sleeping nearby in the stroller- Andy just missed putting bunny ears on me by seconds, can you tell by his hands? Charlie the Rockstar Well, I don’t know that we’ll be signing any record contracts or going on tour any time soon but we sure are having fun with Rock […]