Long Week

Wow! I can't believe I let another week go by without posting!

It really was a long week.

A couple of entries ago, I talked about the stomach flu going through our house. Well, Matthew caught it. He was sick for a couple of days, and on Monday, he stopped eating or drinking all together, so I called the clinic. They told me to go to the emergency department. That was a new experience for us, although I know plenty of other moms who've done it plenty of times.

I was nervous to go to the emergency department because that's where all the really sick kids are. Plus, once you have the cancer diagnosis, it's much more comfortable to go to the people who know about cancer kids. But they were really good to us. My nerves were unnecessary.

When we got there, they were already expecting us, and they took us right back to a triage room. We never sat in the waiting area. After they did all the weighing, and medical history, they took us back to a regular ER room, and we waited there for our nurse.

She was very sweet, and when it came time to access Matthew's port, she was very nervous. That was one of my initial concerns. They don't access ports often in the ER, so they aren't as skilled at it as the clinic nurses are. We could tell our nurse was nervous, but she brought someone with her to help - just in case. As soon as she drew back and got blood, she sent her helper away, but when she added the second container, it wouldn't draw back anymore. She had me help her call the helper back, and they flushed it, and tried again. It worked like a charm. She was so nice, through the whole process, even with Matthew flipping out the whole time. (He HATES getting his port accessed.) Her hands were shaking as soon as it wouldn't draw back anymore, and when she was done, you could see the relief on her face. But I thought she did a great job.

The doctors came and checked him out, and they started him on some IV fluids. When they CBC results were back, it showed that he was pretty dehydrated. The fellow (that's a doctor in their post-college training) came in and said they were on the fence about sending him home or admitting him, and let us decide. We felt that we should bring him home, because that's where he wanted to be. He really hates the hospital lately.

One of the things the fellow said that struck me was that if he started acting confused, we should call. It struck me because he was acting confused before we went in, and we thought it was because of the chemo wreaking havoc in his body. But I saw a difference as soon as we were in the car on the way home. He was finishing his sentences properly again, and he was happy and perked up. It's amazing what a bag of IV fluid can do for a dehydrated 4 year old!

So, going forward, here's what's coming:

This Tuesday (the 13th), Matthew will go in for the first of 8 doses of a new chemo. I wish I could remember the name of it, but I'll add that later. It's another big gun. Nasty stuff. It's going to make him feel crappy, make him nauseous, and knock his counts down drastically. He'll probably end up neutropenic again before the year ends. The 8 doses are crammed into two weeks. 1 dose each on Tuesday, Wednesday, Thursday, Friday, and then repeat again on week 2. That brings us to the day before Christmas Eve. The second day after his chemo, even when it's milder stuff, is always the day you really see it kick in. So, Christmas this year is bound to be rough for him. It's crappy, but there it is.

Cancer sucks.

After that, he will get a 3 week break, and start a new cycle. Interim Maintenance II. It's count dependent (meaning he has to have at least a 750 ANC), and they say a lot of kids don't start on time. That's how long his counts will probably be down.

Interim Maintenance II is mirrored after Interim Maintenance I, only it's higher doses. Among the moms in my support group, we're hearing different things from doctors, so I'm not positive, but, I guess there's a possibility that he will be inpatient for some of his treatment during this phase. 4 days each, and I think 2 times, but maybe 4. This would be to receive high dose chemo that he needs to be monitored after, and he would have to meet counts to be able to go home afterwards. I'll be asking his doctors about that this week to find out more, and if it happens it won't be until at least the middle of January, but more likely February or even March. The upside to this happening is that it would increase his chance for a cure. Anything to increase that possibility is good, even though it feels scary. The downside is that it's more super potent chemo, and that's really hard on him.

After Interim Maintenance II, he goes to Maintenance. That is my light at the end of this dark tunnel. I've been told that it can be difficult to go through Maintenance because everyone thinks treatment is more or less done, so they expect you to be ready to live a normal life again. And they expect the child to be able to act and behave normally, as well as thinking that because they look healthy again, they are. That is not the case.

Maintenance is still treatment. He will be taking chemo every day for roughly 2 1/2 years during Maintenance. The chemo is in the form of a pill. He will also go to the clinic once a month for treatment. I don't know for sure all that happens on those clinic visits, but I know there are regular back pokes to put chemo into is spinal fluid. I think there is IV chemo treatment on those days, too, which means higher doses. He will also have more steroid pulses in Maintenance. Counts are always a struggle in Maintenance, and it's hard because you aren't going into the clinic every week for a CBC, so you never really know what the counts are.

Even so, I look forward to that. It's a lot less time spent at the hospital, and it will be possible for us to try and get away for a while when summer comes, if we can swing it. Once he settles into Maintenance, we can consider putting him back in daycare, with real caution. He misses his friends so much! And it might enable me to work more hours. It's just the return of a little bit of normalcy to our hectic lives that I really look forward to.

We'll never be the same, though. One of the moms in my support group said it perfectly today. She said, "I know too much." It's true. Even when our nightmare is over, we'll always be too aware of all the other people in the thick of it. And so many people have it worse than us. This weekend, I learned of a 19 year old girl who is about to lose her battle. She beat the cancer, and then relapsed, and now cancer is going to win. How does a family ever come back from that?

We'll never fully leave it behind. We can never be what we were, and relapse will always be scary to us, and the thought will always lurk in the recesses of our minds. Every time someone tells us their kid is sick with a fever, or having leg pain, we'll think it's cancer, and want to scream to get that child checked. But, the truth is, hundreds of people figure out how to move forward every year. We'll find our place in the bigger picture when we're ready.

Still, the price we have to pay - all of it - is worth his good health. No matter what happens, I'm proud that we have been able to adjust life to give him the best chance possible at beating this.

Thanks for the continued support and prayers.