Thursday, August 7, 2008

Week 5, and the future...

Today was week 5, which was Vincristine and a bunch of blood tests. The doctor told us that, if the CT scan (on the 26th, while I'm at band camp) shows that they can excise the tumor, they would operate that week - not wait a week and operate during the first week of school. On one hand, I don't really care when the surgery takes place, as long as it's necessary, safe and effective. On the other hand, when starting a new job, it's always best to go one week, minimum, before using a sick day.

Granted, everyone with whom I'm spoken regarding The Boy has said the same thing: "Whatever you need to do, we will find a way to do it." But, still. There's helping and there's the realities of a situation. If I become a bother and a distraction, then they are not going to renew my contract, and I'm right back to where I was two weeks ago.

So, the surgery might take place at that point. We'll see. The rest of the chemo went smoothly and quickly this week. The needles were in, the medicines administered and the needles removed in a very short period of time. The van driver was ready to go before we were, so we were home pretty quickly. The Boy slept most of the rest of the afternoon; I napped with him until the 2 o'clock changing, and my wife napped with him until the 4 o'clock changing. We had dinner at home, and The Boy and I went for a walk after dinner.

Today, it really has starting sinking in: this cancer thing is not going to go away. I mean, when the treatment ends, it's not over. This is something that is going to be a part of our lives on a daily basis (for us, anyway; not so much for him. Children are notoriously good for filtering out chunks of their lives). The child life specialist at the Valerie Fund Center said to us today, "Oh, yeah! The Boy will come to our camp when he's 7!"

That's a really, really long time away. That's six years! For perspective, six years ago I had no gray hair; a high school band job; a girlfriend; no house; lived with my father; owned no Mac computers; and didn't have an iPod. A lot has changed in six years. But, six years from now, we'll still be dealing with cancer issues.

He isn't going to be in treatment for that long, L-rd willing. After this 24 weeks of chemo (a total of 27 weeks of treatment, including post-treatment weekly blood tests), we'll have monthly CT scans for quite some time - like, a year or three. Then, they go to bi-monthly, then seasonally. Wilms tumor is something that can - and does - recur in its patients. As a matter of fact, we met a five-year-old girl today who also has bi-lateral Wilms. She's in treatment for the second time.

Completely disregarding how mind-blowingly terrifying that concept is, that tells me that this is something that we're involved with, for the long haul.

And, just think - we haven't even gotten any of our hospital bills yet. This, coming at a time when my car is dying a slow death and our furnace and air conditioner is holding by a thread. Sigh.

Let's see... two months ago, I was preparing for Big Apple Chorus's travel plans to Nashville, interviewing for an elementary school general music job and looking forward to a nice vacation in Virginia (which was supposed to happen next week). It is amazing how quickly life can completely and irrevocably change.

Don't get me wrong: it's worth it. My baby is the second greatest thing to ever happen to me (next to my wife). This past year has been the best of my life, spending each and every day with him. When he smiles at me and / or climbs on me to play, I feel better than I can explain. I regret nothing and would change nothing. Yes, diaper hell is bad; chemo treatments suck; and it rends my heart when I see him suffer. However, he's worth it. I would do that, and MUCH more, to get him healthy again.


Lizard Eater said...

Saw your blog link on the Wilms' list. So sorry that we have this in common.

Little Warrior was diagnosed at 7 mos old with Bilateral WT. We were nursing, too. In fact, through most of her treatment, that was her only nutrition. Dunno if that's why, but her counts never dropped the whole time.

Almost didn't comment on your blog, because Little Warrior had another occurrence. I know how it can seem like everyone you're talking to has a relapse or a recurrence. But statistics-wise, it's rare for a bilateral child who was diagnosed as a baby to relapse.

Take care. Feel free to email me with any questions or anything. lizardeater at gmail dot com.

Musical Daddy said...

I'd love to know how old she was when the relapse was diagnosed - hope the treatment is going well (better than the first time, anyway).