Calm After the Storm

In Summer 2005, Leland underwent major surgery on his knee. By autumn, he was well enough to start physical therapy. Due to new bleeds in other joints, he had a lot of stops and starts, but he made slow, steady progress. At that point, Leland had been in continuous pain for over a year, but we noticed that both his bleeding and his pain were beginning to lessen slightly. Through the holidays, things continued to get a little bit better. It was hard not to get our hopes up.

Then in January, he took a major step backward, as the knee started bleeding again. Leland’s pain level again went through the roof. He was in the hospital on IV morphine for two weeks, but it barely helped. When he came home, he was confined to bed for two more weeks, taking OxyContin and Oxycodone.

Leland was in even worse shape than before. He had lost all of the progress he’d made in physical therapy. Taking baby steps, we had come so far—only to have our progress yanked away. We were all very disheartened. But as tough as this was on all of us, Leland was hit particularly hard emotionally. After finally seeing light at the end of the tunnel, he had very suddenly been pushed backward.

During this time, our doctors recommended we infuse Leland on the days he was scheduled for physical therapy. This is generally not recommended in cases like Leland’s, because he has an inhibitor and the factor concentrates we use don’t stay in his system very long. Not having done a schedule before, I admit that at first we didn’t do a very good job of sticking to it. But, after the setback in January, we were much more diligent.

Throughout February and March, he was gradually having fewer breakthrough bleeds and the neurogenic pain was lessening. We had been down this road before only to backslide, so we were trying not to be overly optimistic. But at the end of March, we had a defining moment. Leland had been on numerous medications for 17 months continuously—Neurontin for the neurogenic pain and other narcotics for the more acute pain. The doctor in charge of Leland’s pain management suggested that he go off ALL his medication. We shouted, “Hallelujah!”

Another big turning point occurred when Leland got back on the school bus. I know for some people that might sound trivial, but that has been a benchmark during this trying time. For Leland, this meant that he was independent enough to take the bus, that he was walking, and that he would spend the majority of the day in school, though he was limping and still had low-level pain. Physically, it was a big indicator of how much better he was doing. But just as important, the fact that he could join in with the rest of his peers—even if only doing something mundane like getting on the bus—made a huge difference emotionally.

By mid-April, Leland was doing well enough that we wondered if we could dare go on a family outing to New York City for the weekend. That was something we hadn’t been able to plan for a long time. There would be a lot of walking around, but we decided to try it, and limit our walks, infuse every day, and carefully monitor how Leland was feeling.

Just being able to simply plan a trip for our family that had some physical component was a huge boost for all of us. Not only did it remind us of how things “used to be,” before pain became a regular part of Leland’s life, it also reassured us about the future. After a year and a half of canceling plans and sticking close to home because Leland felt so lousy, the trip was liberating. And my husband and I were even able to go away for our 20^th anniversary, which was wonderful. I wish I had some great answer about what the exact turning point was, or some explanation that might help another family who is dealing with similar issues, but I don’t. I do know that to have gotten this break is a wonderful gift and we’re appreciating it every day.

Every time Leland has a new bleed, I still find I’m holding my breath a bit, wondering if and when the pain is going to kick in. There was a recent bad bleed in his elbow that lasted two weeks. The joint was very swollen and locked at a 90-degree angle. I thought that would’ve triggered the pain avalanche, but it never came. Leland did have some minor pain but that proved manageable with regular Tylenol.

Since March 23, he’s been on no pain medication at all, and his bleeds and the accompanying pain have continued to taper off. Even the acute pain associated with active bleeds has lessened. I think that’s because Leland had a break—a chance to recharge emotionally—and his coping skills are much better. I am also happy to say that he seems to have come out of this with an increased sense of responsibility and maturity. Leland has more appreciation for the days he feels well. I am proud that, at 13, he can see the positives associated with a tough experience.

We had gotten to a place where we thought that chronic pain would be part of Leland’s daily life, at least for the foreseeable future. Yet, his bleeds and the accompanying pain have continued to taper off and we don’t know exactly why. Whatever the reason, we are extremely thankful.