A Day for Hope

The phone was already on my lap when it rang this morning. We'd been waiting for this call since Saturday and I recognized the number right away as Dr. H, Gabe's endocrinologist. Her voice was bubbly when she said her hellos and good mornings and I found myself wondering if it was because she had good news...or maybe because she had bad news and was compensating with a cheerful tone...or maybe it was because she's really a cheerful person in general and the news she was about to deliver had nothing to do with her tone of voice.... I didn't have to dissect her motives for long, though.

The preliminary report on Gabe's MRI had come back and the verdict is that his brain looks.......... totally normal! I took my husband's hand as she kept talking, trying not to sob with relief into this lovely doctor's ear. Saturday morning, Gabriel went to Duke Hospital for an MRI. He was in that room for an awfully long while, and I sat there, rosary in hand, and prayed the entire time, half-convinced that it was taking so long because they found something they wanted to look harder at. Over the rest of the day and Sunday, I worked on coming to terms with hearing the worst.  I dared to hope that the damage they found would be minor, despite Gabe being on the upper age limits of diagnosing childhood ALD, and so a bone marrow transplant would still be an option. I barely hoped that there would be no damage at all. I thought about how we would cope (IF we would cope) if they found too much damage to make a transplant possible. When friends asked me what I thought, I told them that I thought there would be demyelinization, but thought it would be less severe because _____ and here I'd list the reasons for and against my hopes as if by quantifying them it would make  whatever the doctor said more easy  to handle. 

Sunday, I spent the day doing whatever the children wanted to do. Gabriel wanted to go bowling and when he asked for one more game, I was want to say no. But, then I thought "what if I never get to bowl with him again? What if today is the last time? What if he never walks again after the transplant? What if he goes blind? What if...What if he dies?" How much would I regret not saying 'yes' to one more game? So, we laughed and played, danced to the terrible "young and hip" music the DJ was playing, and we bowled one more game. Then, we went out for ice cream to Maple View Farm, a great local dairy farm where they raise their own feed, make their own antibiotic and hormone free dairy products, and all the dairy cows have names. I love them, and their ice cream is superb, but they make me think of a Portlandia skit every time I describe them. A clown named Willy made them balloon animals. Gabe chose a hot pink elephant- his favorite color and animal. Cai chose a dog and got a bonus capybara. It's Cai. Don't ask. By the time we went to their favorite park, a place with spinning cup seats and a jungle gym made of ropes, Gabriel was feeling sick, cranky, and tired, but Cai charmed him into playing by spinning him in the cups until he couldn't see straight and both could hardly breathe for laughing so hard. I took a million pictures and I wore sunglasses. That's a tip for you parents out there: sunglasses. When watching your children play together and worrying about the worst, sunglasses hide the tears that spring  to your eyes. We had fun together, we laughed, and played for all we were worth. But, it was bitter sweet. All the while I couldn't help but think "What if it's the last time? What about all those parents who never get to know it's the last time? What about the children who are taken suddenly and all the lasts are in retrospect, never planned? At least we have this." 

And yet, this morning, there was hope. The news was better than I dared to believe possible. Dr. H said that the bone marrow team will be going over Gabriel's MRI with a fine toothed comb. They have to give him something called a Loes Score, which is a point system for rating the amount of abnormalities and atrophy in the brain that goes from 0 to 34. A normal, healthy brain will have a score of 0 to 0.5. A brain with severe damage has 14 or more points. In order to qualify for a Bone Marrow transplant, the damage has to be below a certain number - usually an 8 or 9. For numbers higher than this, a bone marrow transplant may not halt the demyelinization process and may even make things worse. Dr. H said that she doesn't know at this point what the team will want to do and whether they would even want to proceed with a transplant if his brain is showing no evidence of damage. Thursday is the magic day when we find out what the team has learned from the MRI analysis and whether they think that Gabriel should have a transplant. 

I think I'd temporarily forgotten what it felt like to feel so happy or so grateful. Thank you all for your prayers, your kind words, your love. We're moved beyond belief by the sentiments of friends, family, and strangers. Not every parent who hears that their boy has ALD will get to hear such wonderful news as we heard this morning. Not every child with ALD is a candidate for transplant and not every mother will get to say that today is NOT the last day at the park. We're never promised tomorrow, but today we have hope. I pray that Gabriel's blessings can give hope to another family. Keep faith, savor each moment, say "yes" more often, and love harder. Today is a day for hope.