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Saturday, June 23, 2012

Long Time, No See

It seems that my blog entries are becoming fewer and much further in-between. This time, it was because of my own health. I have had a rough couple of months, since shortly after the last blog post, and am just now well enough to sit at a computer - and look at it - for long enough to blog. Please don't take this as a lack of interest or commitment in my blogging, because as my health improves, my ability to write will, too. I am passionate about sharing Matthew's story, and about documenting it for him to have when he's older.

With that said, I'll start with an update on his health since April. He has done remarkably well in Maintenance. For a little while, it even seemed like he was doing too well - if there is such a thing. See, the goal of Maintenance is to suppress the cells that make the cancer, while not tanking blood counts. It's a low, steady dose of chemo, and the reason for the suppression is to ensure that the cancer doesn't come back. The easiest tool to measure that suppression is ANC (Absolute Neutrophil Count). Forgive me for repeating myself, but I know this isn't everyday language for everyone, so I'll briefly explain. Neutrophils are the portion of white blood cells that fight infection. Most people have a count ranging from 2000 to 8000 at any given time. During Maintenance, they like to keep it between 750 and 1500. This shows sufficient suppression of the cancer growing cells without tanking the immune system.

For the first two months of Maintenance, Matthew's counts were above 2000. It was nice, because we didn't have to worry about infection so much. He has been going to daycare, and playing with cousins. We've been to family parties - for once! - and we've really enjoyed the normalcy of it all. But, it also makes my heart feel heavy on some days, because if those cells aren't suppressed enough, it seems to me like he's at a greater risk of relapse.

Relapse is the ugliest word I know.

So, on his third appointment, his doctor was prepared ahead of time to explain this all to me, and also to increase the amount of daily chemo he gets. This chemo is called Mercaptopurine, or 6MP for short. After a month of increased 6MP, if the counts were still high, we would also increase his dose of Methotrexate, which he takes only on Thursdays, but it's 6 pills.

Knowing that his counts were supposed to be lower, I readily accepted this plan. It does run the risk of tanking his counts, but summertime is a good time to figure all of this out, because the kids are out of school, so we have lots of help if he can't go to daycare.

Surprisingly, after we had this discussion, when his blood test results came back with counts, they had lowered on their own. His ANC was 900. We don't really know what caused it to come down, so his doctor ordered Home Health to come out and get a blood draw in two weeks, which was last Tuesday. That didn't work out. Since we've moved, we have a new Home Health nurse, and he was very unfamiliar with pediatric cancer, he struggled with the port and couldn't get blood, so we're going to go up to Primary's on Tuesday, I think, to get his counts.

Also, at his last appointment, they did his lumbar puncture. He will get one every three months now, until the end of his treatment. He used to get them almost every week, so this is an improvement. Anyway, when they do a lumbar puncture, they remove some spinal fluid to make room for the chemo they're adding. The spine and brain are very pressure sensitive, and too much or too little fluid can wreak havoc. Also, it takes a while for the body to regulate it. This time, there was too much spinal fluid removed, and he got what they call a low pressure headache. He was pretty miserable for about a week and a half, and we went through half as much pain medicine as we have for the rest of the year, combined.

He's feeling much better now, and things feel like they're back to normal. It's amazing how much hair he has! Justin had to cut some around his ears last night, but he'll need a real haircut before our trip to Florida, which is in 2 weeks. It'll be the first time we've cut all that new hair. I'm sad because new hair is soft, like a baby's, and that feeling will be gone. But the bright side is that once it's gone, you'd never be able to outwardly tell that he's gone through what he's gone through this year. Unless he had his shirt off, because then you'd see the bump where his port is.

The one last thing to update is his drop foot. I don't know much about it yet, but it's caused by Vincristine, which he gets in his IV once a month. It's painful, I know that, and after his Vincristine the last few times, he has had a lot of pain for a couple of days. It's on the top of his foot, where it connects to the leg. I guess you could call that his ankle, but I think of the ankle on the side. Anyway, it's nerve damage that's happening there. A form of Neuropathy. It makes it really painful for him to walk, especially while there's still Vincristine in his system. It isn't permanent, and they can help him through it with physical therapy, which we'll be starting in a few weeks. Then we'll understand more about it, I think. I'm not sure if he'll continue to get all of his Vincristine, going forward, or not. Some of the other moms said they stopped it when their child had drop foot, and some said they lowered the dose, and some said they didn't change it at all. There aren't that many - maybe 5 out of the 150 or so in our group, so we don't have a lot to go off of. We'll just have to see how his doctors want to proceed.

I'm torn. On the one hand, Vincristine is part of the plan for ALL, which is tried and true, and all together it gives us his good prognosis. I don't want to compromise his cure rate. It's that simple. But on the other hand, we're saving his life so that he can live it. I don't want him to be permanently scarred by this. I want him to have every opportunity in life that other kids have. But a hard lesson I've learned this year is to look at the alternative. Better to have problems with the feet for life than the alternative, which is relapse, or worse. That's the cold truth of it, right there. In black and white. So, it'll be something we'll have to decide once the doctors have evaluated him, and once we understand the risks and benefits of both sides, I guess. Then, of course we'll pray and make a decision together.

It seems like such a small thing to worry about, really, in the grand scheme of things. I've seen so many kids go through so much worse. I guess I just want to have my cake and eat it too. I want him to live, and I want him to be able to move on with his life, forgetting that cancer ever took a minute of it away from him.

I read somewhere today that a wound is what lets the light in. It was so powerful to me that it brought me to tears. All the wounds my family has had inflicted on us during this last year (which is a lot more than the cancer alone) will make us better, in the long run. Right now, we feel tender, maybe a little too exposed, or vulnerable, but years from now, we'll look back on this and be able to see that it helped us become what we will be then. It's what the refiner's fire is all about. Gold goes into the fire messy, and comes out beautiful. Maybe the drop foot will be a blessing in the end, even if that's hard to see now. Maybe the same is true about the cancer, and the other crises we've had. Only time will tell.

The other day, I found this image and quote on Facebook, and it made me feel very hopeful.


"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history, it becomes more beautiful."

~ Billie Mobayed









Tomorrow, I'll blog about Matthew's second trip to The Wishing Place. They revealed to him that his wish will be granted, and held a star raising ceremony. It was pretty special! Stay tuned.