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.
June 28, 2012
June 27, 2012
Still here...We've just been home for a few days working and picking up some pieces. I myself have taken to purging. I have built up the nerve to finally rid our house of some things and tackle the overwhelming pile of mail that has built up over the past few months. We have doctor bills and prescription bills and cards for Clayton and insurance claim notices and so on. Loads of them...all of them. I have all Clayton's medical stuff organized in the big three inch binders, so I've had to sort everything. I can say that having seen the amounts on many of the insurance claim reports, in addition to the bills from MSKCC, I feel confident saying that Clayton's treatment has definitely passed the million dollar mark. Not that it matters; it doesn't. One day though I am going to tally the costs for a grand total just out of curiosity. I just opened a claim report from his tumor resection and his surgery and treatment on April 20th (only on that day) at MSKCC and saw it cost $210,792.84. That's crazy! Obviously we do not owe that or anything remotely close to that. We are beyond fortunate to have the best insurance ever! (And amazing people who have gone above and beyond to make sure that we are in a position so that we do not have to feel overwhelmed by any potential medical bills.)
Anyhow, Clayton is doing great. He has aquired one of those little American flags and runs around the house waving it. He is so happy to be home now. He had a ball too when we made a trip to Lowe's and he got to drive the "race-buggy" around. We are not seeing any more clots or any more blood in his urine which is awesome. Yay!
On another note a little girl passed away from neuroblastoma on the 25th. She was diagnosed in November of 2010 at just 14 months old. By July of 2011, her tumor had started growing back in her brain. They did come to MSKCC to try and undergo their pioneering treatment (which is the best in the world), but in the end, the cancer had its way. Unfortunately, the history of the disease shows that if it comes back in the brain, it is often very very aggressive. Please pray for her parents. I hope to never know what they are going through, and desperately hate it for them.
I HATE this disease! This stupid stupid disease. It is like knowing a cold blooded killer and having to fight them off blindfolded. I think most parents would agree that if someone ever hurt their child in anyway, that they would want to- at the very least- rip off that person's arms and beat them with them...only that is never an option here because you can't see this "bad guy". This bad guy will come and go as it pleases; without warning or consideration- or arms to beat it with. It will be years before I will feel safe from the grips of this "killer". And as you can see from the little girl's story above, this disease can easily relapse at the point we are at now. That is why we cannot let our guard down. That is why my nerves have been shot over having to delay our antibody treatment and radiation. We need to start them Monday. We have to keep fighting this, we are not out of the woods yet. Some kids never reach remission and some reach it and stay that way; others however, can go into remission for three months or for fifteen months before relapsing. The ladies I work with probably think I'm crazy with all of my sporadic babbling this week, but it's a means of forgetting about not only what we have to do Monday, but what this disease could be doing while we wait...
Anyhow, Clayton is doing great. He has aquired one of those little American flags and runs around the house waving it. He is so happy to be home now. He had a ball too when we made a trip to Lowe's and he got to drive the "race-buggy" around. We are not seeing any more clots or any more blood in his urine which is awesome. Yay!
On another note a little girl passed away from neuroblastoma on the 25th. She was diagnosed in November of 2010 at just 14 months old. By July of 2011, her tumor had started growing back in her brain. They did come to MSKCC to try and undergo their pioneering treatment (which is the best in the world), but in the end, the cancer had its way. Unfortunately, the history of the disease shows that if it comes back in the brain, it is often very very aggressive. Please pray for her parents. I hope to never know what they are going through, and desperately hate it for them.
I HATE this disease! This stupid stupid disease. It is like knowing a cold blooded killer and having to fight them off blindfolded. I think most parents would agree that if someone ever hurt their child in anyway, that they would want to- at the very least- rip off that person's arms and beat them with them...only that is never an option here because you can't see this "bad guy". This bad guy will come and go as it pleases; without warning or consideration- or arms to beat it with. It will be years before I will feel safe from the grips of this "killer". And as you can see from the little girl's story above, this disease can easily relapse at the point we are at now. That is why we cannot let our guard down. That is why my nerves have been shot over having to delay our antibody treatment and radiation. We need to start them Monday. We have to keep fighting this, we are not out of the woods yet. Some kids never reach remission and some reach it and stay that way; others however, can go into remission for three months or for fifteen months before relapsing. The ladies I work with probably think I'm crazy with all of my sporadic babbling this week, but it's a means of forgetting about not only what we have to do Monday, but what this disease could be doing while we wait...
June 23, 2012
Coming home...YEP
Well we made it to the airport for now. Hoping nothing goes wrong...
Updated... Uh oh, we made it to Atlanta...we might actually make it...
Clayton is having fun in the mean time saying hello to all the other passengers...
Hot Dog! We made it home!
Updated... Uh oh, we made it to Atlanta...we might actually make it...
Clayton is having fun in the mean time saying hello to all the other passengers...
Hot Dog! We made it home!
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