If you know me, you know that I have a thing with teeth - I really don't like them, they totally gross me out. Imagine my chagrin to have one of my very own teeth "go bad" on me. I'm on antibiotics right now to try and get the infection under control before they do a root canal next week, but in the meantime my mouth hurts. The other night at dinner, during highs & lows, I said that my low was my tooth hurting. In a level of sympathy beyond his years, Jonah stroked my arm while making a comforting noise and then told me he was going to make me a card and share one of his lovies with me. And just like that - God's work in Jonah shines through. This sweet little boy, who has walked an unimaginable year responds - without a beat - with sympathy and love. Again and again he shows what a blessing he is to our family.
Then, the next day, I was driving with Noah and Jonah - and the boys were talking about what Jonah is going to be when he grows up. Jonah has long wanted to be a veterinarian, but often mistakenly says vegetarian. This little mix up always makes us giggle, so we love to talk about his future careers. This time though, Jonah vacillated between vegetarian/veterinarian and police officer. It was sweet to listen to the boys weighing the pros and cons of each profession, and I felt a great longing for their conversation to have future relevance. How great would it be for Jonah to be able to choose a career? The implications are so far reaching - this longing - complete remission, physical healing and no additional mental impairment. How my heart aches for the chance to sit with Jonah someday in the future and weigh his career options.
I think that my longing is fueled by what is known as "scanxiety" in the cancer world. Jonah's first post-treatment MRI is Tuesday (6/28). We have every reason to believe that the results will be favorable as Jonah is doing so well these days, but the reason they scan so often is that they hope to catch things early - before there are any symptoms. I was recently talking to a friend about the economy of God - how in times like this we want to bargain - "God, I'll have root canals on all my teeth if you grant a clean scan" - and that the currency is actually trust in the sovereignty of Christ. I am scared, but we are held by a God who created all and set the world in motion, and so I'm trying to rest in the faith of the bigness of God to carry me through this scan and all the other ones to follow.
One point of clarification - as I've had a few conversations lately about the upcoming scan that led me to believe I wasn't clear in an earlier communication. When we started Jonah's treatment in July, our oncology team was aiming to cure Jonah. Their goal was to make him cancer-free forever, and there is a possibility that they will have achieved their goal. It is in fact our deepest prayer. Based on current treatments, if medulloblastoma comes back after radiation, there is no cure. There is however treatment, and there are many children who relapse (multiple times) and go back into treatment to prolong their life. In some cases, this additional treatment is able to add years to their lives. As of now though, there is no other cure, there are only additional treatments until nothing works. I make this point of clarification, as, be it this scan or the one a year from now - if Jonah relapses, he will likely end up back in treatment - back to the hospital lifestyle we have only recently left. Our team will no longer be fighting for a cure, but they will be fighting to give him a few more quality years so that hopefully a better treatment, another cure can be discovered. This is of course why we support pediatric cancer research - brain tumors in specific. We need better options in this pediatric cancer world. I pray that our support isn't self-serving, because Jonah will be cured, and that it is only to provide other children with better options, but the way our story will unfold is only known by the One who knew us before we were.
If you are the praying type, next week obviously has a few things we'd love prayer for:
* Selfishly I'd love pray for my root canal on Monday (6/27). I'm actually in enough discomfort that I'm looking forward to it, I just hope that it actually makes things better.
* Jonah's MRI is Tuesday (6/28). I suspect it will be earlier in the morning, as he will be sedated, but I won't receive time confirmation until late on Monday.
* Wednesday (6/29), no matter the outcome of the MRI, we have a team meeting to review the MRI as well as our plan forward. If the results are concerning, treatment options will be on the table. If the results are encouraging, we still have to talk about adding a few new specialists to the team (endocrine, allergist, etc).
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