Plans Were Meant to Be Broken

"How is Aaron doing?"

That is a question I'm asked frequently these days, so I'll attempt to answer it here, although I'm finding it can change drastically minute to minute. 

Three cases in point:

1. Aaron had a routine blood draw scheduled for this past Tuesday (funny what has become "routine" in just two weeks' time). But on Sunday night, he was exhibiting symptoms that were making me nervous: bruises and petechiae were appearing out of nowhere again, sores were sprouting in his mouth, and his gums were bleeding. I didn't feel like he could wait until Tuesday. So Mike took him in on Monday instead. Sure enough, his platelets had dropped back down into the single digits, requiring another platelet transfusion. Looking back, I'm guessing he could have held out until Tuesday, but I've become a bit jumpy lately.

2. On Wednesday through Saturday of this past week, we had a reunion with my family. We all stayed in a big house not far from our home (and the hospital, which turned out to be a good thing). Wednesday and Thursday were great. Being around grandparents and aunts and uncles and cousins perked Aaron right up. He was the happiest I had seen him in several days. Then on Friday morning, we went on a short hike. It was not treacherous or strenuous, but Aaron began to fade, and quickly too. He was at the back of the pack, and after less than half a mile, he said to me, "Can we go home soon?" (I thought he was having a bad attitude.) Then he said, "I am so cold." (Note: it was not cold.) And finally, "My head is hurting." We decided to turn around. By the time we got back to the parking lot, he was drooping against my side and breathing heavily (and I was beginning to panic). We rushed him back to the house, took his temperature (it was 101.5) and called the hospital. Within minutes, all of our afternoon plans were cast aside and we were on our way to the clinic. (Thankfully, after a round of fluids and some rest, his fever disappeared, and we were allowed to go back to the reunion.)

3. Last night as Aaron was going to bed, he said, "My throat is hurting." I got a feeling of foreboding in my chest, which was confirmed this morning when he didn't have the energy to get off the couch. His fever was back, which meant another trip to the hospital, and this time he was admitted. It looks like it's something viral, not bacterial. But it doesn't really matter because either way, I'm guessing the first day of school is out for tomorrow. And we were so close to making it!

You would think that I would have already figured out that absolutely nothing is set in stone, and I must stay flexible. But I just can't seem to help but get attached to my plans. It's in my nature. And every time something unexpected happens, it's like I have to recalibrate. This is not an easy process for me. And sometimes, like today, it involves a lot of tears. (I was holding out on the hope that he would be able to start school, and I was so devastated to give up on that.)

You might expect that these unexpected changes would only affect me if they were negative in nature. But I'm finding that it's the change itself that impacts me, regardless of whether it is positive or negative. For example, if I spend a lot of mental energy working through and accepting some bad news and I come up with a plan for how to deal with it, and then I find out it wasn't so difficult after all, well, that's hard for me. Some of you probably think this sounds crazy. Probably because I am crazy. But basically I feel like I can never win because whether I plan for the best or the worst, it's almost always different than what I'm expecting. 

This is all to say that the last couple of weeks have been rough. Not in a brutal, heart wrenching way. But more in an up-and-down, never-know-what-to-expect way. 

But that's maybe more about how I'm dealing with all of this rather than Aaron. Back to him:

For sure, the worst thing he has been dealing with over the last two weeks is an abundance of sores in his mouth. When he was discharged from the hospital, he had one on his tongue. They tested it for the herpes virus, but it came back negative. They decided to treat it anyway. But instead of helping, it seemed to breed more sores, and a new one appeared almost every day. His lower lip is especially plagued by them, and sometimes he is in so much pain, he can't even think. We are treating them with a variety of things (magic mouth wash for pain, biotene for swollen gums, anti-fungal in case that's what's causing it), but so far nothing is helping. The most likely explanation is just that he doesn't have much of an immune system (his ANC (absolute neutrophil count) is currently sitting right around 100 or 0.1, which I've learned is very bad), and so his body just can't fight these invaders the way it normally would. But he sure would be a lot happier if they would just go away.

He is going in for weekly blood draws (in between other unexpected, unplanned visits), and his cell counts continue to interest us. (Mike, being the nerd that he is, has started plotting them on a graph.) His platelet counts have gone something like this: 4, 33, 96, 23, 8, 44. (You can probably guess where the transfusions happened.) His hemoglobin has been less sporadic: 8.7, 7.2, 10.4, 10.4, 8.7. His white blood count has held steady right around 2.5. Those numbers might not mean anything to you, but it's like an unfolding saga for me. I never know what they're going to do next. 

In other news, while some of our more trivial plans continue to fall through (see above), we still are on hold for the really big plans (i.e., treatment). We got the results back for all of the infections they tested for as a possible cause of this disease, and they all came back negative. This probably means that we will never find out a cause (which is the case for 80% of the cases). However, we are still waiting for the genetic test results to come back, as well as the one that has all of us on the edge of our seats: the bone marrow results from our other kids.

So we wait. And we make plans. And those plans fall through. And we make some more plans. And we wait again. This is the cycle we're in right now. It's not exactly fun, but for the most part, it's not too bad. There have been so many sweet moments and tender mercies and little miracles. But I think I'll save those for another post. 

P.S. Thank you all so much for your love and support, encouragement and prayers. They mean the world to us.