Archive for October, 2009

Better and Possibly Home Today

Saturday, October 31st, 2009

Sam came out of surgery yesterday with clear pee.   Dr. DeCambrie got us in by 9am yesterday and he was done by noon.  She said his bladder looks much worse this time around, she showed me some pictures of it just gushing blood.  Sam is going to have to lay very low for six to […]

In the Hospital with Hematuria/Stuck for Halloween

Friday, October 30th, 2009

Sam’s bladder started bleeding again on Wednesday afternoon.  It’s very dark red with lots of clots this time around.  We sent him to school yesterday with a huge bottle of water hoping against hope that it would clear up and he could have Halloween.  Yesterday afternoon it was looking worse and he said he’d felt woozy […]

Getting Blood and Platelets Today

Monday, October 19th, 2009

We are in the hospital all day today getting blood and platelets.  Sam’s platelets were at 4 today.  Yeeks!  They called us right back after the blood check and “Come back now!”   I didn’t have it together for homework so we are playing chess and Blokus and Sam is currently watching the Pink Panther.  We […]

The Band is Back Together

Friday, October 16th, 2009

We are home and as Neil says, “The band is back together.”   We were almost the Beatles for Halloween but the boys weren’t up for it.  I guess it’s a good thing since I’m a little tall to be Yoko ;-).   We stayed in the hospital Sunday night thinking Sam might need a platelet infusion Tuesday morning after […]

Radiation level down 6.9

Sunday, October 11th, 2009

We are cleared for take off from the hospital today. Sam’s radiation level was 57 on Friday, dropped to 18.6 yesterday and today is 6.9. It only has to be 7 or below for discharge. We have a scan tomorrow at 10:30 am but my Dad has a hotel room close by so since Sam […]


Friday, October 9th, 2009

Sam was injected today with his second infusion of MIBG. The catheter was place at 6:30 or so this morning and things have gone pretty smoothly so far. It’s been very calm this go around. Neil and and Sam and I played Scrabble last night and he and I stayed up and read a book […]

Much Improved

Wednesday, October 7th, 2009

Sam had an 8am scan this morning and Neil just called after meeting with Dr. Maris and Dr. Mosse and they are both very happy and see things as much improved.  We got rid of most of the bone marrow disease.  Sam still has quite a few bony lesions but we made some really good headway […]

Home/Sam Neil Off to Philly Tomorrow

Sunday, October 4th, 2009

Just a quick update to say that Sam came home early yesterday morning.  The procedure went well though it took a lot longer than the doctor originally thought.  There were many many clusters of veins close to the surface of Sam’s bladder.   One in particular that was bleeding quite a bit so she cauterized spots […]

Cystoscopy Today and Pictures from Deb

Friday, October 2nd, 2009

Sam is having a cystoscopy today.  You can learn about the procedure here:  It’s my fault we are doing it today because Neil and the urologist wanted to do it last week when we were inpatient and I didn’t want to put Sam through it thinking things would clear up but unfortunately they haven’t.  He’s […]