Starbugs

"If there was never any darkness, we would never see the fireflies."
These beautiful words grace the cover of a card sent to Cutler and Gabe by Cutler's aunt Shelly. They hold special meaning for the two of them and they so perfectly capture the lesson that we have learned and continue to learn anew. Some people call them lighting bugs, some prefer fireflies. Our little girl used to call them "starbugs" and I always thought that this was a particularly delightful moniker because it reminds us of the innocent awe that we had as children, when it seemed to us as though the magical insects brought to earth a tiny peice of celestial light. So many of our friends and family have lit up the darkness for us in these past days with the bright twinkling of their love and support. It has been a dazzling and humbling thing to be a part of, much like the awe of watching fireflies dance gracefully through the night. The light of our loved ones has been nothing short of celestial. They have been our starbugs, for sure.

If I thought I was busy before May 1, I have since learned that I had a lot more down time than I used to believe; down time that has now been taken up with filing paperwork, chasing down medications, talking to billing departments and hospital social workers and and filing more paperwork. Not to mention helping Cai with her jewelry orders (www.moonribbons.com). Life is a whirlwind of activity and I barely have time to worry about anything but completing the next step. I try to focus on the things that I CAN do. I can't control what happens inside Cutler's brain and I can't control what happens in Gabe's. I can't control what their diseases do to either of them. What I can control is having the paperwork needed for Cutler's discounted Zofran prescription completed and sent in, I can make sure that they get to their doctors appointments, I can sell tickets to the Carolina Mudcats Game our friend, Christy, has organized, I can make sure Cai's orders get shipped....

These things keep me very busy, but they also keep me sane. The give me steps to focus on. They break the war down into small battles that, with preserverance and strategy, can be won. And what else is there to do besides pray and do whatever has to be done? One day last week I felt very overwhelmed by it all, there was just so much to do and I still have to be a normal mom, still have to work full time... I'm trying to relinquish responsibility where appropriate to others who offer to help, but that's not easy. I feel like if I'm not doing most of the work, I'm being lazy or unhelpful or taking advantage of others' kindness. I have to remind myself that people WANT to help! The night is full of starbugs, but I have to let them shine!

Speaking of being busy, Cutler isn't able to tolerate a lot of activity; he has frequent seizures and the chemotherapy makes him feel like he has the flu. He likes warm sunny days because he can get outside and toss the ball with Gabe or relax in the community pool with the children. He's often too sick to eat more than one meal a day. But he's in good spirits! That counts for a lot!

The mystery of Gabe's unresponsive ACTH levels may have been solved! It turns out that the pills he has to take hurt his throat to swallow, so Gabe has been spitting them out when we're not looking! We talked to the endocrinologist today and she thought that explained an aweful lot! They'd been practically drowning him in steroids and saw no results! We're going to be switching to a liquid form of hydrocortisone, which is not only much easier to swallow, but a lot harder to surreptitiously spit out. We have to get the medication directly from the hospital pharmacy because, his doctor explained, some versions of liquid hydrocortisone are untrustworthy. We're going down to his original dose of 5mg three times a day in the hopes that, if it's actually getting into him, he won't need such high steroid doses. He's still on the itty bitty arc on the growth chart, but he's gaining a little weight, finally!

Cai's final round of bloodwork has been sent off to John Hopkins and we should know in a month for sure whether she is a carrier and whether she is Gabe's bone marrow match. The first round of lower-level testing looked good, but now she will have DNA testing and high-resolution HLA typing.

One thing that has been remarkably helpful was joining an ALD support group. When I started this blog, I must admit, I felt pretty alone. This diagnosis is very frightening and no one, not even many doctors, seems to know what it is. When my sister told her pediatrician that she needed to have her son tested, the pediatrician had to google it (blessedly, my nephew does not have ALD). When I spoke to my doctor, she had never heard of it, either. I've mentioned elsewhere on this blog that internet searches can yeild bleak results. So, imagine how heartening it was to be invited to a group where not only are there other parents who understand exactly what we are going through, but some of whom have boys who are asymptomatic or have mild symptoms! If that's not hope, I don't know what is!

Between old friends and new, family and even strangers, we feel so uplifted, hopeful, and loved. Whether they're coming over to dance with me, hosting a fundraiser, donating to our cause, offering advice on mixing crushed pills with applesauce, selling tickets, working on Cai's site, saying a prayer, or just reaching out to say "you're not alone," they have all been our starbugs: our lights in the darkness, the beauty and delight in all of this. Thank you. I could never, ever say it enough. A million times, thank you.