A slight introduction: I thought about calling this blog “What’s Next?“. I also thought about calling this blog “Hey! The Light At the End Of the Tunnel Isn’t A Freight Train!” I ultimately settled on “The State Of Chase,” as we look to cover both the present and the future in this post. If you have any questions, please don’t hesitate to ask! Message us, or post questions in the comments – we are always happy to answer.
A year ago this month, we knew so little of malignant spread, the low percentage of survivors and the collateral damages of surgeries, radiation and the cancer itself. Now, we are a year older and wiser (I hope) in this cancer path. We know where we’ve been, but where are we going? Where is Chase now in his treatment plan, and what is still ahead for him? This subject is a mixture of speculation and fact, and will likely come out looking like Jell-O I tried to nail to a wall (i.e. there is still much we don’t know, but here are a few things we’re reasonably sure are ahead for him)…
Chase is well over halfway done with his 54-week protocol. He has about 3 chemo cycles left. Each chemo cycle is approximately 3 weeks apart, but the ability to start the next cycle is dependent on a Chase’s recovery from the previous cycle… hence, our one-year protocol* is likely to last about a year-and-a-half. Our highly-uneducated guess is that, should Chase stay on schedule, he will finish towards the end of the fall, hopefully by Thanksgiving**. What a great day that will be!
*protocol: the fancy word they use for a specific chemo schedule of treatment (which drugs the patient takes on x-numbered weeks for x-numbered months/years)
**I cringe over putting a potential end date in writing because it’s a lot like posting when a baby is due. There is such a small chance things will actually happen on/by that exact date. So please, please don’t quote me as fact on this!
It will most likely take some weeks (if not months) for his immune system to recover to the point where he can sustainably feed himself (instead of the 14-hour IV nutrition bag he currently gets every day). This is the unknown bit: how long will it take his body to recover from over a year of aggressive cancer-killing? We have no idea, but we can tell from small things we observe even now that this will not happen overnight. I do know that he will need to undergo speech therapy, occupational therapy and physical therapy. He will also need to keep up with his ENT regarding his hearing (or lack thereof) with the possibility of hearing aids, and he will also begin working with endocrinologists (to deal with some other effects of treatment). He will continue to have full brain and spine MRIs every three months, keeping up with his neuro-oncology team, have yearly ECHOs to check his heart, and some other minor things that will have him visiting the hospital. As I recite this list, my idea of “back to normal” grows more dim and more silly all the time. And over all of this is the shadow…
The shadow of relapse. What if the cancer comes back?
ATRT is vicious and is known to come back, and even if, by a miracle, his ATRT doesn’t relapse, Chase is still at higher risk for secondary cancers because of his treatment. The tasks and appointments are endless, and the possibilities are choking.
Why pursue or continue in this treatment when it’s so harsh? Because Bob and I have complete peace in following our doctors’ recommendations for Chase in this. Because, with a cancer where survival is often measured in days and months, Chase has been here a full year. Because of his current state.
So, what is Chase’s state?
The truth is that in this moment, he is great. He’s a statistic-defying, bald miracle who (as I mentioned at the beginning) is sleeping soundly in the other room. This is why I sign every post “moment by moment“–because the cancer journey is a path riddled with crippling “what-ifs” and the worst-case scenario is often the norm. Tomorrow, and the day after, and the next treatment, and the next round will come in their own time, but in this moment, the state of Chase is a state of grace in which he informs me: “Mom! Everything is under control!” It’s a state in which he screams over blood draws one minute, and teases with residents on rounds in the next. It’s a state in which he sees doctors almost every week, but spends the large part of his clinic time running up and down the clinic hall flirting with nurses. It’s a state in which he informed me on the way into surgery that I should not be worried for him because he will be brave.
Chase amazes us at every turn, and in this moment, God has ordained joyous (yes, I said it was filled with joy) life for him. So we will prayerfully take these other things in stride as they come to us, all the while begging God for the continued perspective that this is just a season of life, but our true joy and is found in Him who promised that one day none of this cancer pain will exist ever again.
Moment by moment.
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. And he who was seated on the throne said ‘Behold, I am making all things new.’ Also he said, ‘Write this down, for these words are trustworthy and true.” Revelations 21:4-5
Chase with surgical nurse Jen in pre-op for his second line procedure in a week.
