Today is the 1st Annual World Moyamoya Day to help raise awareness about this rare (and pretty scary) disease and to celebrate its survivors.
Peter and I were talking last night about Claire, her diagnosis and prognosis, and what the future holds for her. I had to clear up some misconceptions he had... and thought I would take the opportunity today to do the same for all of you, dear Readers.
1. Claire is not cured.
This seems to be the biggest misconception. Claire’s surgery did not miraculously “fix” her. Claire’s surgery was an attempt to provide the means for her body to fix itself. Because Claire is a pediatric patient and her vessels are not big enough for a full bypass procedure -- Claire had an indirect surgery, which should allow for her body to create new blood supply to the affected areas of her brain over a period of time.
2. Over a period of time...
That’s a very important point there. It will be six months to two years before these new blood supplies develop in Claire’s brain. June 7 will be Claire’s six month anniversary and June 12 she will have a procedure to determine how things are progressing. During this period of time, Claire is still at risk for stroke, seizure, TIA, and other scary brain things.
3. How at risk?
Well... high risk. Very high. Claire had at least three strokes before her surgery. I say “at least” because all the strokes happened in so-called quiet areas of her brain and she had no outward signs of them. So three strokes show clearly on some of the many brain scans Claire has had done, and two more are questionable. So, our fearless warrior child could have had as many as five strokes before she had surgery.
Claire also recently had a trans ischemic attack (TIA or “mini-stroke”). During a TIA, a blockage occurs, disrupting the flow of blood to the brain. A rare complication of a TIA is a brain hemorrhage -- which can be fatal.
Claire can, and likely will continue to have “episodes” while her brain is healing itself and developing new blood flow. No one knows what the probability is -- this disease is so rare, not much is known about it at all. And Claire is an anomaly in so many ways that she’s even harder to diagnose.
4. Claire is not the same as she was.
Because Claire looks the same, and mostly acts the same, and because I treat her the same as “before” -- people assume she is the same. She isn’t. This diagnosis and her treatment have caused major changes in who and what Claire is and will be. She is not worse -- she is simply a different Claire now. I’m not asking anyone to treat her different (as I said -- I don’t) but I would like it if people would understand that she’s been through a major trauma and it has affected her. It will continue to affect her. And we are all doing our best to deal with that. Claire requires a bit more patience than “before”. So does her mother... and her brother... and others who love her.
5. What does this all mean?
I hate answering this question. HATE. It’s scary and I don’t like to talk about. I’m not sailing away on the Good Ship Lollipop wearing my rose-colored glasses when it comes to Claire’s prognosis -- but I also don’t particularly enjoy thinking about or talking about the death of children. Any children. Especially my child. I prefer people digest the facts themselves and come to their own conclusions, or Google it. But, that’s not been working out so well (see Exhibit 1. Peter) so... here goes.
Claire could die from this.
There. I said it. She could die. Of course, she could get run over by a runaway Dial-A-Ride bus too -- there are no guarantees about how long we get to bless this world with our presence. But there it is. Claire could have a massive stroke today, tomorrow, or (hopefully) never. The surgery may be a success, or it may not. This could develop on the other side of her brain, or it might not. We. Just. Don’t. Know. I’ve been told a lot of scary facts, and figures, and I don’t like to talk about them. Or even particularly think about them to be honest. No one does.
You don’t want to come up to me in the grocery store and ask, “How’s Claire?” and have me respond with, “Well, there’s an upwards of 67% chance that she could have a massive stroke and die within the next six months.” What’s the proper response to that? “Ummm... I think I read somewhere that carrots are good brain food and I think they’re on sale this week.”?
Nope. That’s not a conversation I want to have with anyone. Ever. So instead I focus on the ups and try to mitigate the downs.
6. So what are you going to do?
We are going to do what our neurosurgeon suggested we do... Live. Claire’s life has been forever changed but we are still going to enjoy and celebrate that life as it is now. We are going to celebrate the small victories (staying on honor roll despite all she’s been through) and the large ones (surviving a TIA). She is still going to have to clean her room and eat her vegetables. We are not going to mourn all the things she can’t do (ride a roller coaster, go on a water slide) but instead choose to enjoy the things she still can (ride a bike, swim). For however long we can, we are going to live... and hopefully, hopefully, live well.
And we are going to try... TRY to listen to what Bob Marley said:
“In every life we have some trouble. When you worry, you make it double. Don't worry. Be happy.”