Details

This morning, I realize I haven't answered the question that's always first on everybody's mind: What are his chances?

Leukemia means kids die, right? That was my first thought when they said Leukemia - this is one of the really bad cancers. I remember watching movies on Lifetime and the like about kids who suffered from Leukemia, and it made it seem awfully scary.

I won't necessarily share the exact details, but I've always known what kind of a man Matthew will be. I know, without a shadow of a doubt. So, even when they said the word Leukemia, I didn't think he was going to die, but I did envision this lifelong battle with the disease. Not everyone had that to comfort them, though. Justin, the kids, and all the grandparents were more worried about death, I think.

It took them until Thursday to get all the details of his diagnosis. We knew it was Leukemia, but we didn't have all the classifications. We didn't even know it was ALL, and other Leukemias are much more dangerous. I said in an earlier post that if you had to have Leukemia, you'd choose Matthew's kind. It's true.

We've struggled to nail it down to a specific number, but his chances of a complete cure are somewhere between 85 - 95%. Our doctor says 85 - 90, but we've heard other doctors and nurses say 93, 94, and even 95.

So, what we can basically expect is that after the 3 years and 3 months of treatment (which is set in stone, unless there are delays - but they said there are almost always delays) he will most likely never experience another symptom again. In fact, he should be in remission very quickly - at the end of induction, which is August 5th. The rest of it is about resetting the bone marrow to make healthy white blood cells.

Which leads me to my next topic of discussion: What exactly is Leukemia?

Everyone knows it's cancer of the blood, right? But what does it do that makes you sick?

Well, Leukemia cells are actually white blood cells. They're just mutated enough to cause a real problem. Normal white blood cells are born in the marrow, go out into the bloodstream where they mature and do their work, and then they die and are disposed of through the body's waste. Leukemia cells are a problem because they don't die. Our doctor told us that in the very beginning of the disease, they can actually still help to fight infections. From what I gather, though, they never die, so they stop doing any good. What's more, they then crowd up your system, making it so that you cannot make new, good blood cells to do what you need them to do.

All of this fits in with Matthew's symptoms that first month. In fact, the reason that the lumps on his cheek and neck went down, but didn't go away, is because the Leukemia cells were likely being stored there, and had nowhere else to go. With chemo, the lumps have mostly disappeared already.

So, the last topic of discussion is his medication and the side effects. Everyone wants to know about that, I know. Right now, I really only have detailed information about induction, because that's the phase we're in. Today is day 11 of induction, which is 28 days long. During induction, he will have chemo every Thursday. On day 1, he had the chemo in his spinal fluid (and I can't remember the name of that drug), and he also had Vincristine, which is administered out of a very large syringe, but only takes 2 minutes to do. It goes in through his IV. On day 3, he had a dose of Peg-Asparaginase, which took 2 hours to administer. They take a bag of liquid, which looks like the regular saline you would normally get through an IV, and they infuse it with your saline drip. Then on day 8, he had the spinal chemo again, and Vincristine again. On days 15 and 22, he will get more Vincristine. And on day 29, He'll have more Vincristine, and they'll do another spinal tap and bone marrow aspirate, or biopsy, or maybe both.

I don't know if it gets more or less intense after induction, but I know it stays pretty regular for another 6-9 months, and I'm pretty sure they'll be switching up the medications.

Right now, he's also on a really strong dose of steroids every day, along with something strong for heartburn, because the steroids cause that in a serious way. And on Mondays and Tuesdays, he has to take an antibiotic to prevent a specific type of pneumonia that immuno-compromised people are susceptible to. Also, pain medicine.

All together, it sounds really overwhelming, but it's still a lot less chemo than I expected. Mostly Vincristine, which our doctor said is probably one of the mildest chemo medicines - not that any chemo is mild, but this is less harsh, I guess you could say.

He has not thrown up, hasn't even had any nausea that I'm aware of. He will lose his hair soon. There is a very rare chance that he won't, but I'm not expecting that. He does have some bone pain, which is to be expected, because the chemo is killing his bone marrow, plus steroids can cause that same kind of pain. But the pain is easily managed so far. The steroids make him really hungry, which in my book is a good thing because he had lost so much weight before, and I could use some help getting it back on him. But that makes the days when he has to fast for anesthesia very difficult. It feels unbelievably cruel to give such a tiny child medicine that makes him ravenous with hunger, and then make him fast. The rest of the anesthesia procedures we have scheduled are at 11am, though, which we can survive. Last time, it was 2:30 in the afternoon, and that was incredibly awful. His belly is big and hard, like he's pregnant. At first, I thought it was because he was eating so much after so long of hardly eating anything, but I called the hospital, and they said it's a side effect of the steroids. His face will get really round, too.

I honestly think the side effects of the steroids are worse than those of the chemo. I can't wait for the end of induction because he gets to go off the steroids.

While I wrote this, Matthew ate two big bowls of popcorn, two scrambled eggs, and 2 and about 1/3 pieces of buttered toast. Now his belly hurts. Poor kid.