Archive for August, 2007
Here are some pictures from our busy July and August at last. Still battling major tummy problems this morning. Sam was pointing to higher in his chest this morning so I just ran and bought and industrial sized carton of Tums. Hoping that will do the trick. We find out who Sam’s teacher is today. [...]
We are home from Texas – got in about midnight last night. Everything went very smoothly. Sam was a champ in the hospital and the Texas Childrens staff was great. Sam’s tummy hurt after he ate for the four days in-patient and he threw up some on the night of the off day but otherwise [...]
Oops. Except for the throwing up and nausea side effect. Yuck . Poor Sam. Neil and I just did the trade off after I spent the afternoon at the Hannons with Charlie and Andy. It’s about 9pm and Sam is sleeping.
We are in Houston at Texas Children’s Hospital. Sam is about to be infused with his CD45 anitbody. It’s a seven to eighthour infusion for four days. He’s been triple medicated (tylenol, benadryll, and steroids)to protect against an allergic-type reaction and he’ll get benadryll every four hours druing the infusions. They expect him to spike [...]
Sam’s bone marrow is clear. We are officially NED (No Evidence of Disease). We were on cloud nine for a few days. We’ve since come down to cloud six because we know the realities of this disease -but I must say that the view from cloud six is very nice. Neil and I keep elbowing [...]
The following is directly from the official MIBG report we received today:
FINDINGS: There is physiologic distribution of radionuclide throughout the body. No evidence of metastatic lesions.
The previously seen small foci of increased radiotracer in the left distal femur are not well seen on the current study.
Did you catch the “No evidence of metastic lesions” part?
Just a quick update to say that Sam’s numbers yesterday were beautiful. VMA 2.(something) -sorry don’t have exact numbers handy- HVA: 7.(something) LDH 647. Since we haven’t heard from Texas Childrens, we’ve gone ahead and scheduled scans for next week. MIBG is next Wednesday and bone marrow biopsy (yuck) is on Thursday. Sam is doing [...]