Jan 5th

First of all, sorry for the lack of updates but there really just wasn’t a lot to report and as we have always maintained, no news is generally good news at our house.

Unfortunately, we have do have some news to report that isn't so good.

The good news is that Brody has a been feeling fantastic—he has been super hyper lately, laughing, playing, tormenting his big brothers at times. He got his cast off a few weeks ago (it is split now and we put it on only at night with velcro straps) has been doing real good with school and has been enjoying just being a kid. He also has been eating real well lately. He has been playing a fair amount on his new Nexus 7 tablet he got for Christmas and last night he gave me a pretty good lecture on how to play Minecraft on it.

The bad news is that Brody’s tumor appears to be getting larger both visually and by the CT that he had yesterday. Trish and I noticed about 8 days ago when doing Brody’s dressing change for his nephrostomy tube that it appeared as if there was a slight bulge on his left side about where his kidney is, maybe a little below… you can’t really see the bulge with the dressing on and it was fairly subtle (meaning we just may not have noticed it before). Trish regularly palpates his tummy and the upper edge of the tumor has been since last July just below his belly button—it is now about even and maybe slightly above his belly button. Brody had a CT yesterday and Brody’s oncologist reported to us that the tumor appears to be about ½ a centimeter or so bigger then the previous CT done about 2 months ago. We also changed Brody’s dressing again on Friday night and the “bulge” looks slightly larger then the previous week.

The oncologists are of the opinion that the chemo appears to still be working but that the tumor is so large that the chemo drugs aren’t getting to the entire tumor and that it is slowly growing. They and we are in agreement that we need to get proactive with Brody’s treatment and try to get ahead of it. As mentioned previously, the chemo regimen Brody is on is a “maintenance” chemo—meaning that it isn’t overly aggressive against the tumor but is also less toxic (meaning he feels better while on it) and is more intended to hold this type of cancer at bay—obviously better when the tumor is small. Since we have already tried the standard chemo treatments (back in May, June,  & July), and they were not effective, we are planning on getting a surgical consultation next week done and we are hopeful that the surgeons are confident that if they can’t get the entire tumor, they can at least remove part of it so  there is less tumor to treat with the Chemo Brody is on, and also give him more room in his abdomen for his organs (kidneys and bowels mainly) to function (and be rid of his nephrostomy tube). 

I wish it were just this simple but it’s not--- one of the Chemo drugs Brody receives (every 2 weeks) is called Bevacizumab (I can’t say it either)—this drug is believed to be effective against tumor growth by preventing new blood vessel formation. Unfortunately after surgery your body needs to be able to grow blood vessels so you can heal so they have to stop giving this drug before and after surgery. Trish looked this up yesterday and it is generally accepted practice to be off this drug for 4 weeks prior to surgery and another 4 weeks after. Brody last had Bevacizumab 8 days ago and if he starts his next Chemo round, he would be due to get this it again this coming Friday. We should know in the next week, how we are proceding--- the best time to pause his chemo is now as he just had his OFF chemo week so his counts will be higher for fighting infection or what not if we go with surgery in about 3 weeks (his 4^th week off of Bevacizumab). They will likely stop his Vinerolobine (given 3 out of every 4 weeks)  and oral  Cyclophosamide (he takes this orally every day) too so his counts are higher when he has the surgery. 

Anyway, that’s where we stand now. We should know more by next Friday about how we will proceed. Trish took the boys down to her sister's in Chattanooga Tennessee this weekend for the boy's cousin's birthday party and to visit... I am working this weekend after my nearly 2 weeks off for Christmas/New Years (a well needed vacation)-- I ended my vacation with 2 days of homeschooling the boys (they resumed on Jan 2nd) which makes me appreciate teachers all the more.

We are all doing as well as can be expected, we have tried to be open and honest with Brody throughout this ordeal-- when Trish told him they might be doing surgery to take out the tumor because it looked to be growing again; he was worried that it was happening that day-- when Trish told him it wouldn't be for a few weeks at least, Brody was happy again and got back to his Tablet... As kids do and as Brody illustrated-- He lives his life "in the moment" and if  we have learned anything from all this, it is to live life in the moment and cherish those moments because none of us know how many of those we will have.

Once again, We would like to thank everyone that has supported us through this ordeal and followed our blog--- concern, compassion, assistance, prayers, thoughts, words, and just listening all make this easier.

Bill & Trish