Brody CT Scan Results

Brody had a CT scan today.  His tumor has gotten a little bigger again.  It's about 1cm larger all the way around the mass within the abdomen.  The tumor within the spinal column is about the same size.  He has been getting radiation treatments to the tumor within the spinal column and so it is suspected that this mass may be dead tissue and that it may have shrunk just slightly.  Brody certainly is far less symptomatic so I would concur that the radiation treatments have had an effect even if it is not so obvious on the CT scan.   It has been a couple of months since his last CT scan.  Our oncologist feels that the chemo regimen Brody has started is at least slowing down the growth of the tumor.  He has only been on the new regimen for 3 weeks.  The plan is to do another CT scan in about 3 weeks to see if it is finally at least holding steady (not getting bigger).  It's hoped that we will also have results back from GeneKey by this point in time also.  

 If we can find a chemo regimen that at least holds the tumor from growing, the plan is for Brody to soon have surgery at Cincinnati Children's Hospital to remove as much of the remaining tumor as possible.  During this surgery, the surgeon would also move Brody's intestines away from the area the tumor had been in and use a mesh to hold them away from this area.   This would be done so that Brody could receive radiation treatments to the abdomen in the areas his tumor had been in.  The intestines cannot withstand very large doses of radiation.  Moving them will allow Brody to receive additional radiation treatments to the abdomen again.  This would hopefully improve Brody's chances of survival or at least give us more time.  After Brody heals from surgery, he would continue with chemotherapy again too.  

Brody has been doing tremendously better since starting radiation treatments to his spinal column.  He is walking again now.  He has a bit of a skip but he is getting around pretty good.  He has been eating okay (eating is still a challenge but he's eating) and has not been complaining of any pains.  He also has control of urine and bowel function again.  

Brody should receive his last radiation treatment this week and will soon be stopping his dexamethasone (corticosteroid).   We will start to taper down the dose of dexamethasone starting next Monday.  This medication can cause quite a bit of irritability.  It's making Brody be a "Mr. Grumpy Pants" (Jaden's term).  We will be glad to have him off this medication.  It's not a pleasant one for him nor anybody around him.  I feel a little mean saying this today though.  Brody has been absolutely the sweetest little boy ever today.  Maybe he's adjusting to life on dexamethasone.  I have really enjoyed my time with him today.  We spent the bulk of our day at the hospital but he was just talking and talking and talking. I love our conversations!  

Brody's hair has been falling out quick.   He has been losing big chunks of hair at a time.  It's really been annoying him but he had been very reluctant to go ahead and just shave the rest of his hair off.  He's a little older now and although he's not really admitting it, I think he is upset about his hair falling out this time.  He really seemed to just want to keep it as long as possible.  He finally decided it was really starting to look ridiculous too and agreed to get the rest of it shaved today.  We went to Great Clips in Maumee today after we were finally done at the hospital.  They surprised us with a free head shaving as part of their "Clips for Kindness" program.  I got a little emotional watching Brody getting his hair shaved off.   It was very hard not to start crying (I managed to hold it together though...I don't want Brody to see me cry).  I was surprised it hit me so hard.  Losing his hair is really not that big of a deal compared to everything else he is going through.  And, he is still the cutest little thing bald too.  I'm not sure why it hit me so hard today.  Fortunately, Brody is much happier with his shaved head.  He is relieved to not be dealing with it falling out into his eyes and all over him all day.  He says that he is so glad that he just went ahead and did it.