After a mostly sleepless night for Adam and I, we got up this morning as usual, slapped cheerful expressions on our wan faces, and sent our birthday girl off to school. Then we decided that Logan would, despite many protestations, go to preschool, so I loaded up all three boys and headed out. I dropped Logan off first; he clutched his lovey, Lambie, for dear life as I carried him into the classroom. Even once we were inside, he maintained a sulky, serious expression and stood still in the middle of the room. He didn't make a beeline for the writing center as he usually does. I left, and dropped Isaac off at his classroom. I hung around for a little while talking with Kelly, the director, and she watched Brady for me for a few minutes while I watched Isaac's class take pictures with the visiting pony, Popeye. I couldn't find Kelly and Brady post-pony, so I headed over to Logan's class, and sure enough, my sobbing baby was sitting at the table with my 5-year old. Kelly told me a sweet story from minutes earlier: Upon seeing Logan, Brady toddled over to him, and Logan told his baby brother that it would be okay; that mommy would come back for him. I so love that child. Then I headed off to the dentist (and if you've never had a cleaning with a squirmy, tired, cranky 10-month old perched on your lap, you haven't truly lived; I'm happy to lend mine out to locals who'd like to experience that brand of joy). And then it was preschool pick-up time; Logan fell asleep on the carpet and was still out cold when I arrived. Isaac, of course, was wide awake and bouncy like a rubber ball. Then we went to lunch at a local pizza joint, where Logan inhaled a lot of pizza and Isaac oohed and aahed over the selection of arcade games and toy machines. Then it was home to wrap presents and bake the cake. Then it was Abby pick-up. And soon, I'll have the tricky task of getting Abby's birthday photos taken and then whisking her off to her dance class lickety-split. And there's more. I write all of this not because I think anyone is especially interested in the minute details of my day, but because I'm interested in those details; those boring little tidbits that are so precious but often so forgotten in the face of 'big events'.
So anyway. In the midst of all of that busyness, Philippa called. I didn't answer my phone because I didn't hear it ring, but the reality is that I wouldn't have answered it anyway. When I got home, Adam shared the content of the discussion he'd had with her. The short of it is twofold. One, everyone who's seen the scans agrees that the spinal damage from radiation is the same, if not a little worse. But certainly not any better. It's disappointing --crushingly disappointing-- that the torture he's suffered at the hands of Decadron didn't have any visibly positive effect on fixing the problem. It means that he'll likely start on the drug Avastin, which is most commonly known as a breast cancer medication. It has, curiously, been shown to have restorative qualities for damaged tissue. As thrilled as we're NOT about starting another new drug, at least it presents the possibility that his damaged spinal cord will eventually repair itself. The huge downside is that as of now, they want to keep him on Decadron. We really don't want this, as it's already responsible for dramatic changes in him. He's simply not who he once was, and it's crushing to see him morphed into someone else. Please, God. Please. So please pray over that. PLEASE.
Two, per Philippa's interpretation --and they're VERY careful with communication when it comes to Logan, since we've had a few bad experiences-- the news about the enhanced area on his lower spine in the nerve fibers may not be what we'd feared. Though the fellow who called us last night told Adam that it was a NEW spot that hadn't previously been enhanced (hence the concern), Dr. T. wasn't in agreement. Philippa's interpretation of her conversations with him on the subject were that the spot HAD shown up in previous MRI scans dating back several months. As a result, as of this morning, he considered the scan to be stable in terms of the presence of active disease. Of course, he was continuing in the process of seeking out additional opinions and taking more detailed looks at the scan and the previous scans. Philippa also noted that if there is something going on, it's not necessarily the same kind of disease he's had before. His spine is a complete wreck, and it looks weird. It's looked strange and weird and unusual for months now, but the important note is that it's always been consistent in its strangeness. We don't know what to make of it or who to believe. Do we believe the radiologist, who thinks it looks different, or Dr. T, who doesn't? It's frustrating. Maddening really, that two medical professionals can look at the same set of films and see two completely different things. But as I've said hundreds of times over the past 15 months, it is what it is. And we wait.
Logan has a clinic visit tomorrow morning, and we'll get a chance to hear what Dr. T has to say about everything --the spinal damage, the spot, and all of the symptoms. I did learn that his hemoglobin yesterday was back up to 9.5, which is still low but better. And curiously, his TSH (thyroid) level was just a hair high, so it's likely not responsible for his extraordinary tiredness. I could go around and around in circles, trying to understand the symptoms and connect the dots, but I'd go crazy doing so. There are a lot of numbers and a lot of side effects and a lot of symptoms to sort through.
But the one thing that we desire is healing. I said many months ago that the ONE thing that will matter for Logan is the hand of God touching him and bringing about lasting healing. Even in my exhaustion, frustration, anger, hopelessness... I still believe that's true. I still believe that in order to receive healing, we have only to ask. So that's what we're doing: Asking. Trying hard to believe, even in the face of yesterday's disappointment. Trying very, very hard to hold on to faith.
I know that I ask you to pray every single time I write. I've posted to Twitter, asking friends and people I don't even know to repost and ask their friends and neighbors and strangers to pray and repost. What I cannot do is express the absolute desperation that I feel when I'm looking up the names of new celebrities --people with huge audiences and hopefully big hearts-- to beg for their help in spreading the word. I know it sounds pathetic. I'm embarrassed to admit that I do it. But I do it for my Logan. I do it because he's WORTH the embarrassment. Because no matter how hard I try, I know I'll never be able to adequately convey the depth of my sorrow and compel them to repost and ask others for prayer. I know: It's risky to do that. It's scary to say 'hey, I don't know this person, but her kid needs help. Pray for him.' I do it because I believe in the power of prayer and in intercession. Why else would I post publicly? I do it because we need help, plain and simple. I can pray and pray and pray, but we need help from Logan's army.
So that's the update for now. Thank you for praying for us and for my sweet Logan. Believe for him. Please: Just pray and believe. Healing is available. After all, ask, and you shall receive. Seek, and you shall fine. Knock, and the door shall be opened unto you.