Posted 2016-01-26T22:06:00Z

January 26, 2016: Here we are, again.

The biggest question we get about Edward, besides "How's he doing?" is "Um... I'm sorry, I really don't know exactly what he has. What is it, again?" So here's a quick recap:

Early in 2014 Edward began exhibiting neurological symptoms (tremors, weakness, erratic eye movements) which quickly advanced until he could no longer walk, crawl, sit, or even hold his head up. He was diagnosed with neuroblastoma (cancer), and a tumor was removed from the nerves in his left shoulder. The cancer has never come back, but Edward's immune system continues to attack his brain with the antibodies it developed to fight the cancer. This autoimmune condition is called opsoclonus myoclonus syndrome (OMS), and he continues to suffer from varying levels of the neurological symptoms we first noticed nearly two years ago. He receives infusions of immunoglobulins (IVIg, a blood product that gives him other people's immunity) every three weeks to help control the OMS symptoms. There is no cure for OMS, and all children respond differently to treatment. Very little research has been done on OMS, so we don't know much about Edward's future. Most kids eventually come out of the active phase of OMS, and no longer require immunosupression to keep their immune systems from attacking their brains. Some kids appear to recover completely, though they always carry the possibility of relapse. Other kids are left with cognitive, behavioral, speech, and/or motor deficits. Our goal is to try to minimize the damage to the brain during this active phase of the disease, in hopes that Edward will lead a normal life in the future.

And now onto a regular update, which I've been trying to write for days. Let me explain...

A week ago, it was going to be a sad and frustrated post because Edward has been getting worse. He usually shows a few symptoms as he gets closer to his next infusion, but recently he'd been falling a lot more and his already limited speech was becoming more garbled. He'd been drooling more, having more opsoclonus (weird eye movements), waking up screaming at night, having more tremors, having trouble feeding himself, etc. He used to have a hard fall once or twice a week, but recently it's been an average of about one fall every hour.

On Thursday we saw Edward's doctor, and if I had written a post then it would have been a panicky post wondering how we were going to fit everything in now that Edward would be starting up rituximab the next day, again, which meant an all-day infusion at the clinic once a week for a month in addition to his IVIg home infusions every three weeks. Kameron had five meetings scheduled for Friday, so couldn't keep Henry like he usually does, and we had that trapped feeling that comes from having too many high priority things demanding one time slot.

On Friday it was going to be a worried/tired post. I dropped Henry off for the day with friends for the first time in his life and then I spent all day at the clinic with Edward and Molly. Because Edward had his first reaction to the rituximab (even though he's had eight other infusions of it with no ill effects), they had to stop the infusion, give him a dose of steroids, and then start it up again very slowly. In the end, those setbacks made the process longer than the clinic was open and we had to move down to a hospital room to finish the infusion, all of which made us not get home until 8:40PM. Of course, we're very grateful his reaction wasn't worse, and that we were able to finish giving him his dose.

Each day has had its different theme, but today is Tuesday, and this is a hopeful post. I'm happy to report that—for the moment, at least—all of Edward's symptoms have improved. He is falling much less frequently and even his speech seems clearer. It also serves as a forum to let you know we're so grateful that you're interested in how Edward is doing, but we often don't know how to answer, because we don't know, ourselves.

We don't know what tomorrow or next week or next month will bring, and we still have a lot of demands on our time and attention, but God is good, and we're going to be ok.

Thank you for your prayers and for thinking of us.