Quick update

I just wanted to clarify Trish's post a little.

His CT on Tuesday showed the tumor had grown, but this CT was compared to his one in January. He did 4 more weeks on his previous chemo and then had his "bad week"-- he has only improved since he started his new chemo and radiation.

My point is, we are hopeful that the tumor has been shrinking on the new chemo. It is possible that it grew during the 4 weeks he was on his previous chemo after his CT, and has began to shrink since then.

Since he did not have any imaging done (with contrast)before his current chemo, we just don't know what the new chemo is doing yet... we will have a better idea after his next CT.

We are enjoying him feeling well and as Trish said, he has been extra sweet the last week or so almost all the time-- he starts his next chemo round on Monday.

We had a bad winter storm (again) yesterday (got about 7 or 8 inches of snow with wind) so Brody got his last radiation treatment today rather then yesterday (the cancer center at Flower Hospital was closed yesterday).

We are hoping that was the last of the snow for the year-- been a crazy winter-- we have gotten a total of about 7 feet of snow this winter (which is way above normal for us).

I think that's it for now.....

Brody after getting his head shaved

He didn't have much hair left to shave off by the time he decided to go through with it.   He misses his hair but is glad to be done with it falling out in his eyes and all over him.  

Brody playing with his hamster yesterday

Brody had fun playing with his hamster,  dogs,  and cat yesterday.  He loves his animals!   Looking at this picture I cannot believe how much hair he lost in just one day.  The next morning he had far less hair.  

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.  

Brody feeling "mostly" well

Sorry for the lack of updates but we had a pretty busy week.

Brody has been having his labs followed very closely this week so was in for labs on Monday, Wednesday, and Friday at Toledo hospital. He of course is also getting his radiation therapy at Flower Hospital every afternoon and has been doing great with laying perfectly still while this occurs. Brody also got his Bevacizumab chemo (which has held the previous week due to his bowel distension) on Wednesday (on this regimen he is supposed to get it every other week).

Brody has been slowly improving over the week and is feeling pretty good most of the time. His bowel movements aren't quite as frequent and his persistent groin swelling finally started going down on thursday and looked pretty much normal size and shape by friday night. His main complaint has been pain in his lower left leg that comes and goes but when it comes it hurts him pretty bad. We are hoping it is referred pain from the tumor pressing on the nerves in his spinal column and the radiation therapy will hopefully take care of his. He is still favoring his left leg when he walks and has kind of developed a "skip" to get around (which we like much better then him hopping or crawling).

Brody started a new Chemo regimen back on the 19th of February only 1 week after starting a new round of his previous chemo regimen, so his counts as expected have dropped way down. His White Blood Cell count is very low as is his Hemoglobin and Platelets. The Hemoglobin and platelets can be fixed by a transfusion-- and we are expecting one or both to likely occur this week. We have been giving Brody Neupogen injections each night since last Monday and hopefully his counts will bounce back up soon.

Brody turns 8 tomorrow and we celebrated his birthday today with a bunch of his friends. Since he isn't very mobile we had a "Movie" party at a local theater. The kids watched "the Lego Movie" and then had some cake and presents opening afterwards in a little party room at the theater. We were worried about a snow storm overnight on Saturday extending into Sunday but we only got about 3 or 4 inches and it stopped early enough that the roads were not too bad and everyone except one boy that he invited did show up (16 kids total).

Brody has been somewhat moody the past week which we attribute mostly to him taking a Steroid recently (roid rage??)  that he is getting to reduce inflammation of the nerves in his spinal colunm-- he is ok most of the time but every once in a while goes off the handle about something... we have been walking on egg shells alot of the time trying not to upset him... but in reality, he has alot to be mad about so I don't blame him for blowing off some steam occasionally.

We will likely be busy again this week--- Labs tomorrow and probably blood or platelets and he still has Radiation therapy (he has done 7 of his scheduled 15 so far) for another week an a half.

That's pretty much it with us... we are still doing as good as can be expected....more later.

Brody opening presents at his party today.