Round 2 - Fight!

Well, we've had quite a couple of days.

Matthew is restless and tired of being cooped up in the house. He really misses his friends at school, who he talks about constantly still. He hasn't been to daycare in 6 weeks, and before that, out of the last 4 weeks, he missed 3 because of the infections in his cheek and neck. But those kids were such a huge part of his world that he misses them like crazy!

He misses his Primary friends a lot, too. He really wants to be around other kids, which is sad because he can't because they're little germ factories.

Sunday, I went to church with Alaina, Allison and Mikey. Justin stayed home with Matthew. Matthew can't go to church at all. He won't be able to for a few years. That makes me sad, because I know how wonderful primary can be, but I didn't think he would be so upset about it because I usually have to fight to get him to go to his class and sit with them during sharing time. On Sunday, however, he was in tears that he couldn't come with us. It was really hard to leave him. This is the only way we can continue going to church, though, and it's important to us to continue. For us, and for the kids - all four of them. So Justin and I take turns going to church while the other stays home with Matthew and has the sacrament brought to them.

Sunday was supposed to be Justin's turn, but he had a headache, so I went. I was going to go for Primary anyway, but I just went for the whole time. I'm glad I went too, because I got released from my calling as Primary President, and I taught my last sharing time. It was cathartic. I did cry a healthy dose of tears, because I'll miss those kids like crazy. I did manage to stop the tears before they all got there for sharing time. Besides, I know it's for the best. I can't be there every week, and I certainly can't devote the time necessary for a calling of that magnitude with my current familial responsibilities.

Anyway, Matthew's cute Sunbeam teachers sent home all the handouts, and it really cheered him up. Then I took him to the neighborhood park, which he really enjoyed. (Pictures to come tomorrow.)

Monday, Alaina started school - 11th grade!

As the kids are starting at their respective schools, I'm afraid that Matthew will feel more and more alone. I need to find activities for him to do, but the problem is that every time I take him out of the house, I lose control of the respectively germ-free environment he has at home. So his counts play a big part in what I can do to get him out of the house.

Anyway, Monday we got a visit from a home health care nurse. Matthew liked her a lot, and cooperated in standing on the scale, measuring his height, checking his pulse and blood/oxygen saturation - the whole deal. But when it came time for her to access his port (put a needle into his catheter), he was very upset. I had to hold him down, and he cried his eyes out. She put the needle in, and got no blood from it. So she had to pull it out and try again. Still no blood. She tried a third time, and still got nothing. That was her limit. She gave up and left, and we didn't get to find out about his blood counts, which was the purpose of the visit. What's more, Matthew was pretty traumatized, and I don't know if he'll tolerate visits from home health care again, which will make future blood draws pretty inconvenient. We're going to try again in about a month, and then we'll consider alternatives.

So, today we went to the clinic. Before we could get started, we had to get his port accessed, and get a blood draw so we could find out his blood counts. Then we were whisked off to RTU (Rapid Treatment Unit - where they do short procedures that require general anesthesia) for a Lumbar Puncture (Spinal Tap - for chemo in his spinal fluid). Then back up to the clinic for IV chemo. We were at the hospital for about four and a half hours today.

The bright side is that when we went back upstairs to the clinic, we found out Matthew's counts. What follows is a very rudimentary overview of ANC.

ANC stands for Absolute Neutrophil Count. Neutrophils are the part of the white blood cells that fight off infection. ANC is the most important count to a Leukemia patient, because that's what the Leukemia attacks, and that's what the medicine attacks. When someone's ANC is extremely low (below 500) they are neutropenic. That means they don't even have the ability to fight off the germs in their own bodies. For example, we all have a germ in our lungs that's there all the time. Our immune systems keep it at bay, but when someone is neutropenic, they are highly susceptible to a very specific type of pneumonia. Because of this, Matthew will take a special antibiotic for the next three years.

Matthew's ANC was 0 when we were admitted to the hospital in July the week he got diagnosed. That's exceptionally bad, and we're lucky his salivary gland and lymph nodes were all that got infected.

So, as we move up the scale, 0-500 is neutropenic. 500-1000 is "at risk." You should keep the child in a very germ free environment, but they can at least fight off the germs inside of their own bodies. 1000-2000 they can go into public, but are still a little low. 2000 - 3000 is what a normal, healthy person would have.

So, with that little crash course, Matthew has been above 1000 once in six weeks. He was at 1500 for one day. The next day, we checked again and he was at 1000 again. It can be that fleeting. Of course, he was fighting off a virus that day, and thank heavens he had some neutrophils to do it! But it was a bummer when we saw it go down, because we had all sorts of activities planned.

Today, when we got back his numbers, they told us his ANC was 1900! Justin and I both practically got up in the clinic and did a little happy dance. What's more, Matthew's doctor told us today that for the next 29 days, his counts are likely to stay high. Needless to say, we wanted to celebrate, so we took Matthew to the movie theater, which he had been asking to do since he got sick. 1900 could be fleeting - you never know. We also stopped into the nursing home today (the place where Justin worked for 10 years prior to his new job, which he just started 3 months ago.) They did a fundraiser for us, and we brought Matthew in to meet the people who were in charge of it.

The other thing that 1900 allowed was for Matthew to start his next round of chemo. A "round" of chemo is set up as a specific number of days, where they administer medicines on a very strictly regimented schedule. Induction was 29 days. He got an 11 day break (usually only a week, but they moved us from Thursdays to Tuesdays, so we got some extra time.) Now we are on Consolidation, which is also 29 days. Some rounds go for up to 12 weeks, and then there's always the famous Maintenance. That's the last round, and it actually goes for over 2 years for boys. It's a lot to take in, but suffice it to say that Consolidation is a relatively easy round, and I keep hearing that the kids handle it really well.

We should have our happy little Matthew back this month, and we're ready to party!