Expect the unexpected
It’s funny how an ordinary day can take a turn in an instant. We’re in the home stretch for Layla’s 30 days of radiation (yay!!) and every Tuesday we also visit our oncologist at Children’s Dallas for an exam. Ya know, listen to her heart, take some blood for counts, check her balance and reflexes …normal stuff 😉
A few weeks ago I had asked our oncologist a question that I thought I already knew the answer to. Did Layla have MYC amplification in her tumor cells? The reason why I say I thought I knew the answer is because this amplification is associated with kids who have tumor spread and a worse prognosis. That wasn’t our girl. I was prompted to ask the question anyway because another Medullo mom had asked me. I knew the answer I was expecting but asked anyway.
You can imagine my shock when I heard “yes, she does have MYC amplification”. 😮☹️🤔 I think my face showed all those expressions at one time. Excuse me? That’s a bad thing, right??? My heart began to pound and I could feel my hands getting clammy. I didn’t understand why we didn’t know this from the beginning. I got the impression that our oncologist had the same questions and he had made several phone calls to St Jude’s to inquire (thanks Dr B!)
Here is what I know about MYC amplification: it’s generally associate with Group 3 tumor subtype, more common in males and has a “dismal” prognosis. And, as I mentioned above, these kids have the disease spread either in the brain or spine (or both). In the chart below, it is represented by the 3rd column.
Now, let’s all remember that I am not a scientist and sometimes when I read scholarly articles on this stuff my eyes start to glaze over 😴😴 I power through because I want to know this stuff for my kid and other parents going through this. Back to my story…
One in a million
Turns out Layla is what the researches consider an “outlier”. In fact, she is the only case they have ever seen where MYC amplification is present, but there is no disease spread. Layla has had 3 MRIs and 3 spinal taps and never has there been any evidence of tumor cells. So what does that mean? Honestly, we don’t know. Our doctors will continue to treat her as planned. She couldn’t have gotten any higher dose of chemo. Typically kids who have disease spread receive full cranial and spinal radiation. This type of radiation leaves severe and debilitating side effects in its wake. Layla is only receiving focal radiation at the tumor bed site which is much preferred for long term side effects and cognitive function. If given the option, we would have gone with focal radiation anyway.
I’ve decided there are two ways to think about this new knowledge. We (and by “we” I mean me) can spend time worrying that Layla is now at increased risk for relapse OR we can choose to hope her outlier tumor can help researchers discover new treatments and ultimately a cure. I’ll be honest, my first reaction was worrying about relapse. Remember how I’m an apocalyptic worrier? I spent most of yesterday feeling like I was back in October, just learning about this diagnosis and not knowing what it all meant. Thankfully I have a wonderful husband and friends who helped me snap out of it.
I will praise today and not worry about tomorrow. Our future is written and I cannot fathom what God has in store. I’m thankful for each morning she wakes up and each night I can tuck her in bed.
In case you can’t sleep tonight, here’s some lite reading for you 😝 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3808772/#!po=21.3542