Wednesday, February 29, 2012

Maintenance, Here We Come!

Well, yesterday was Matthew's last chemo before Maintenance. Although it feels rather anti-climactic, it really is something to celebrate. I hesitate to get my hopes up because the first few months of Maintenance can still be pretty rough - in some cases even rougher than some of the phases. But this is the beginning of the end. A really LOOOOONG end (from now until October, 2014, to be exact), but the last phase nonetheless.

This is what we've been looking forward to. This was the light at the end of the very, very dark tunnel. Now, we'll have a new, less dark tunnel to get through. But we're looking forward to the positive changes we'll be able to make.

I grilled Matthew's doctor for a long, long time yesterday. He sort of has two doctors. His main doctor, Dr. Afify who is a certified oncologist, and his Fellow - which is sort of like a student doctor, but not quite the same. She has finished all of her college, and has done a residency in pediatrics, but to work in such a highly specialized field, like oncology, you have to then go through a fellowship, which is three years. Her name is Dr. Jensen. I will always have a soft place for both of them in my heart. They saved my baby's life. We see a lot of different oncologist when we go in, because Dr. Afify is only in the clinic on certain days - some days she works in ICS (the immune compromised unit) instead. And she also travels quite a lot. But we almost never go without seeing Dr. Jensen. Not every patient has both an oncologist and a fellow assigned to them. I feel very lucky that we do.

I love Dr. Afify and her deep wells of knowledge and experience with pediatric cancer. She has worked in this field for many years, and in more than one country, which I believe gives her a unique perspective. And I love Dr. Jensen because she's so new to oncology in particular, and she's passionate, and she studies like crazy. She studies Matthew like crazy.

Yesterday, we saw Dr. Jensen, but not Dr. Afify. We saw another oncologist, who I was familiar with, but whose name I can't remember. He's a nice guy, and smart. I remember him from other appointments. But We only talked for a few minutes, because I had already discussed everything I needed to discuss with Dr. Jensen.

I had a long, and much needed talk with Dr. Jensen. My appreciation for her was increased, if that's possible. She is a fountain of knowledge, and she is committed to doing this to make a difference with her life. It occurred to me yesterday that in such a specialized field, you can't really decide where you want to live and then look for a job. You find a job and then move there. She told me she hopes to stay in the Western US because that's where her family is. What a strong person to leave her family like that, and go where the fellowship presented itself for work she feels passionately about. Especially knowing she might never be able to "go home" again.

Anyway, I totally digress. Suffice it to say I'm super grateful for the sacrifices that doctors make so that they can care for my child.

Dr. Jensen told me yesterday (not for the first time) that she has a soft spot in her heart for Matthew. She said that he was one of her first cancer patients. I appreciate the love she feels for him. It makes me feel like we have someone extra fighting for him. Our talk was great. She answered a ton of my questions yesterday, and she calmed a ton of my fears.

Here's the lowdown on what I could glean about what's coming next.

His next appointment is scheduled for two weeks from yesterday (March 13). She isn't necessarily expecting him to be ready to start Maintenance at that point, though, because his counts are trending down right now, and since his dose of chemo was bumped up, that will contribute to driving the counts down. It'll probably take him a few weeks to recover, which is what they expect. So, we'll have Home Health get CBC every Monday until his ANC reaches 750 (it was 1000 yesterday - it will go down before it goes back up).

When he comes for his first appointment, he will get IV Vincristine (I think..) and IT (Intrathecal - in the spinal fluid) Methotrexate. Then he'll start taking Dexamathasone (steroids) for the following five days, along with 6MP pills daily and Methotrexate pills on the weekends (I think that's how it works, anyway...). This is where he will be joining a study. They are testing to see what tweaking doses during Maintenance does for the survival rates. Hoping to find ways to either up the rates or decrease the meds. It's a pretty new study, but I have at least three friends in the mom's group whose kids are already on it. There are four arms on the study, and I don't fully understand them all, but one of them is the current standard protocol, two of them add extra doses of certain drugs, and one of them has fewer IV and IT chemo treatments - and maybe fewer steroid pulses, I'm not totally sure. They choose your arm at random. Like a lottery. They call it randomization. We'll find out how Matthew randomizes at our next appointment. All of my friends so far have randomized in the most medicine category. I have mixed feelings about them all - if he gets the most meds, it feels like he has the best chances, but that might not necessarily be true. If he gets the least, Maintenance will be a lot easier on him, but it could decrease his chances - again, not necessarily. That's what they're studying. I can only pray that the Lord knows what Matthew needs, and make sure he gets the right arm of the study for him.

I asked Dr. Jensen about daycare, head start, and vacations. She said we need to give it a couple of months. He will need a few weeks right now to recover, and then stabilizing all those meds during maintenance can take a while. We'll revisit those things then.

One of the concerns that has risen up is a weird one. I don't want to sound ungrateful, but it feels like the chemo hasn't had enough effect on him. Sometimes, it's like he barely notices it happened. He never throws up from it. His counts are usually surprisingly good. When he fights off an illness, his body raises his ANC on its own and he is able to fight it off on his own. I know it's weird to be concerned about that, but it feels like maybe it isn't effective enough. Other kids get a lot sicker from this stuff, and spend a lot more time in the hospital. In comparison, it sometimes feels like Matthew is barely fazed. Maybe he isn't getting enough, or something... you know? Anyway, Dr. Jensen said that this could be a concern, and sometimes it is, but they study Matthew's blood often. They check something called a differential, which tells them how mature or immature his white blood cells are. This made her confident that he's okay. I don't fully understand that, but I do trust her, and she knew what she was saying. It sounded like she had already addressed the concern for her own knowledge, and she knew Matthew's blood was okay.

Another thing that's been tough has been Matthew's bone pain and fevers. It seems like he has a low-grade fever every day. 99.5-ish. This was also true before he was diagnosed. He had a fever every day for a month. So it scares me a little. She said that then and now, his body probably elevates its temperature when it's working hard. It's nothing to worry about unless we start to see other symptoms accompanying the ongoing low-grade fever.

I asked her when he'll have another bone marrow aspirate, and she said he won't unless there's a reason to suspect the cancer may have returned. I was surprised they don't check it throughout treatment. But, the last time he had one was August, when they declared him in remission. Everything else after that is about "resetting the bone marrow." That means I need to really learn to just have faith in the process. That's hard, but I can do it.

So, sorry for the information overload! We have so much support, and I really appreciate everyone for all the good thoughts and prayers.

For now, it looks like it'll be a few weeks of our favorite game, Hurry Up And Wait.

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