Things changed...what's new? We will now be doing our radiation first and will be starting it on July 9. During that same week we will be doing five days of outpatient chemo. Yea, I know...more chemo. The good news should be that it will be low dose and should not affect his blood counts very much nor should it cause him any other significant side effects. I don't even know what to say. I have a million thoughts swirling in my head about this newest information, but for now that will have to wait for later.
Get ready for this, because it might be hard to follow...IF we follow the new plan, the radiation will go from the 9th to the 13th and then finish up on the 16th and 17th. The rest of that second week will be spent doing another round of MIBG, MRI and CT tests. Then the week of the 23rd we should be able to come home for 10 days or so. We will be starting the GCSF shots (shots to boost his white cells) on Wednesday the 25th in preparation for finally starting our first round of antibody treatment on the 30th. In a nutshell IF this goes as currently planned, then we will be gone for two weeks, home for 10 days then gone for a week then home for three weeks before we have to do anything again. The biggest change was that they once again decided to give his kidney more time to recover before starting the 3f8 and so they decided that we would go ahead and do the radiation beforehand. Is all of this set in stone? No. Will it change? Maybe. Does it suck? Yes ...and no- we like that we will have a full three week break between the first and second round of 3f8 now. But please don't hold us to any of this, because we don't have a good track record of things going as planned.
I know I can't escape this post without elaborating on why they want to do a low does round of chemo. As you know, I have said many times that this is a VERY aggressive form of cancer. That said, to the best of the doctors' knowledge, Clayton is still NED, however, he has not had any cancer treatment since finishing the last round of chemo on May 6th and so the doctors want to be cautious (we have not been treating cancer the last two months, but rather recovering from chemotherapy and it's side effects) The doctors of course know how persistent this form of cancer can be and so they want to give Clayton a little something extra on top of the radiation just in case there is any "activity" going on anywhere else in his body. From there we will do all of the tests to hopefully cement Clayton's status as NED for now. The fact is that if there has been any cancer activity between the tests at the end of May and now, we probably won't know because they are going to treat it as though there might be and give him the low dose chemo which would hopefully destroy any possible active cancer cells.
Oh this is so frustrating. We can't reverse time and we can't move forward, we are just stuck. We are stuck watching our friends and family and people we grew up with live their lives while we are fighting this awful beast. There is little to no focusing on our careers or figuring out exactly what we want to do with our lives or chasing our dreams. It is all on hold. We were finally putting the pieces together from what we went through with Clayton as an infant and figuring out a way to have the lives we wanted and still give him what he needed... and then this. Now we have to do it all again, but right now we can't do anything. Day to day people cannot count on us because we never know what will happen. This will make us stronger and one day we will be able to move forward again, but now it just stinks putting our lives on hold during a time when everyone we grew up with is surging forwards.
Anyway, we're off to the Clayton Ladd Benefit Barrel Race 2012...more information on Facebook.
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