Now there are signs of chemo everywhere. That peach fuzz is all gone again. The back of Clayton's head is the baldest it has ever been. All that's left are a few stragglers on top. Then you have his sweet little legs- which were always a bit on the chicken side- that are more uncertain than ever and evidence of each and every stint in the hospital. Then there is the random vomiting that doesn't seem to have a rhyme or reason to it, but is sure to keep you on your toes. You never know when you might find yourself in a nice clean bed one minute and in a pool of your child's vomit the next. And I literally mean a pool of vomit with a screaming child trying to figure out the best way to keep it all on the bed pad so you don't have to change the whole bed while simultaneously getting your child clean and causing them the least amount of stress. That brings us to the horror show in his diaper. I am fearful of what I am going to find every time I change his diaper. Today I found this:
I knew there was something going on when I woke this morning. Call it intuition. Sure enough that happened. So the day was spent on and off the phone with doctors and nurses. While changing one bloody diaper after another. Thank goodness after last night's vomiting fiasco, there was no more of that today on top of the diaper (I stand corrected, there was more vomiting this evening just as I got confident the coast was clear). All anyone can guess is that there is damage to his bladder from one of the chemo drugs- short name is cytoxan. My research tells me we could be dealing with hemorrhagic cystitis. So we are going to take him back to the hospital tomorrow and they are going to put him to sleep and take a look inside his bladder. If needed and possible, the doctor will try and fix what he can. No need to panic or anything now. We'll find out what is going on tomorrow. The doctor doing the procedure has been Clayton's urologist since before he was even born. So they go way back. The procedure will be outpatient so unless they find something particularly worrisome, we should be able to come home at the end of the day. We had been trying to avoid having to put Clayton to sleep so they could check things out with the scope, but it is evident that we need to get a better picture of what is going on. We do know from his labs yesterday that his counts aren't looking to bad. In fact, they all looked really good. So it is what it is and we'll know more tomorrow...
For those who want a clear picture of what is going on in our heads right now, here is my 11 pm rant:
**To be brutally honest, I am scared to death that because the bleeding is worse this time then it was last time that there may be damage of some kind. I don't know whether I should be scared to death or whether I should accept this as a scary situation that comes along with cancer and will soon pass as many things do. How severe is this? Why did that first doctor never do a dang thing about it? I don't even think she ever increased his fluid intake. It breaks my heart and is definitely going to have me losing sleep tonight not knowing how severe this is. I know it's worse than last time, but how bad is it? These are the things we count on doctors to tell us. So what the hec are we suppose to do as parents when they can't tell us anything? Maybe this is something that has the potential to resolve itself, but maybe it is past that point. If it is, then why didn't that first doctor act sooner, why didn't she do something? The problem is I have no flipping clue if it is beyond the point of being able to heal itself or not. So I have no idea how I should think or feel about it. It sucks to spend so many days feeling like this. This is what cancer does to you it rips your heart open. Because not only can cancer kill, but the drugs it takes to fight the cancer can do substantial harm. So on a regular basis your heart is hurting about something. Your mind is racing trying to make sense out of one situation after another. You have so many questions and for the most part none of them have answers. And you spend too much time thinking "what if" or "did I". What if I had pushed harder when I knew something was going on with Clayton months before his diagnosis? Did I make a mistake by doing this or not doing that? Every decision has enormous consequences. I don't worry much about "pushing" doctors or "burning bridges" when I feel something should be done because not "pushing" when I knew something was wrong meant that my child was diagnosed with stage IV cancer when maybe it could have only been stage III. That's on me. I can live with pushing too much, but I can't live with not pushing enough and my child suffering because of it. Every decision sucks. It's just like opting not to have them scope Clayton's bladder on Wednesday, the urologist wasn't absolutely sold on the idea, and George and I hated to put Clayton through that so we decided not to unless it got worse. What if that was the wrong decision?**
In the mean time, George and I are dealing with the fact that this part of treatment is still not over. We don't get to move on until we can resolve this issue with the bladder. It is hard to feel like you should be able to move on to the next chapter, but instead your just stuck. It sucks. I have actually begun to look forward to he days when we will go to NYC do the 3f8 and then come home and get to live a relatively normal existence with no side effects. But for now I will continue to have to scrub the smell of vomit off of my hands regularly and be reminded of the frantic moments that have left stains all over my house from the rugs to sheets, even green stains on our bath towels serve as reminders of our experiences over the past few months. I told George that when this is over, Clayton and I get a new couch. We sit on it everyday and we need one that has never known cancer or been plagued by the likes of chemo.
For now, I'm dealing with it a little different every day and George seems to be taking his aggression out by hunting squirrels in the 10 foot wide strip of woods we have in our backyard. Though he started getting after them because they were chewing up pine cones all over our patio, he has now become obsessed. I on the other hand am obsessed with finding the perfect color to paint my cabinets. To each their own I guess...whatever calms our nerves and keeps us sane.
A side note: In general, George and I try and be hopeful and positive given our situation. However, lately that has been a little more difficult. This too will pass though.
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