Thank you so much for your prayers this weekend! We were informed yesterday morning that Chase’s counts had “come back with a vengeance” (ie: his numbers looked really good) and he was admitted for chemo shortly before lunch – residual cold symptoms not withstanding.
Here is a picture from the afternoon…he’s getting another ECHO exam to monitor his heart for chemo damage, but he’s smiling and giving a thumbs up, which I love. Getting an ECHO without screaming is a huge victory for Chase. His skin is so chemo sensitive that the feel of wet or cold is often more than he can handle. The gel used for the exam makes it very difficult for him to be still and stay calm. So proud of him for really working at it yesterday!
And with that, the second to last chemo cycle is well underway. Moment by moment.
Chase’s counts are finally recovering from his last round of chemo! Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday. His levels aren’t exactly where they should be, but are very close. It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week. We don’t hope this because we love chemo, but because Chase only has two chemo cycles left! …and then he’s done!!
We would so appreciate your prayers as these last rounds are, in many ways, the most difficult. The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.
“Part of every misery is, so to speak, the misery’s shadow or
reflection: the fact that you don’t merely suffer but have to keep on
thinking about the fact that you suffer.” C.S. Lewis
September is Pediatric Cancer Awareness month. It’s a time when we find every possible way to say that most cancer babies suffer and many die horribly, and if by some miracle, they escape that terminal diagnosis; they’re often scarred for the rest of their lives in every imaginable way. To say that there’s not enough research and there’s not enough money and there’s not enough action. Not nearly enough. Not ever enough.
It’s almost impossible to turn around this month without having the spectre loom and stare back at you through the eyes of a small child gone long before siblings or school or marriage or children of their own. In September, this dark, middle-of-the-night thought for the parents of a living cancer child becomes a large and constant shadow as we actively stare into the eye of the storm for a whole month of days. Oh, it’s there every other day of the year, but in this month of months, we set aside the business and life that crowds it out and stare it down in all it’s wretchedness.
There are many days I’ve wanted to write, but it’s difficult to write about the truly awful moments because there is no easy way to articulate what it feels like to the human heart to restrain the child you bore and swore to protect as hands breach his skin with needles and tubes and he screams and begs you to stop, but you can’t. There is no easy way to describe the helplessness of walking down a hospital hallway and seeing clusters of white coats and scrubs in huddled consult while family members sob with their heads in their hands and the next week; an empty room, or of watching a three year old being wheeled away from you by an anesthesia team and hearing his cries fighting through the haze of drugs that slow his mind because he won’t remember in an hour, but right now, he knows they’re taking him away and he’s scared even though he’s assured you many times not to worry because he’s going to be brave. Seared into my brain, these moments and many others like them are so dark that my heart physically hurts and the only true articulation of the emotion is a gut-wrenching scream.
In light of this, is it ever possible to be happy…no, find joy after you hear the words “There’s a large mass“?
I believe with all my heart that it is! If there is no joy to be found and shared, then there is no purpose in our suffering and we live in needless agony without end.
My ultimate joy is the knowledge that a day is coming when there will be no more tears or pain and death won’t exist anymore. A day when women won’t cry with empty arms and children won’t know the sound of broken, powerless adult sobs next to their hospital beds.
And until that day of no more, I am given small treasures as I walk through the ugly. The moment Chase laughs and jokes with his doctors, the time he grabs the nurse’s arm and kisses it, the times I lean down to tuck him in and he tells me he loves me and that I’m his favorite mommy, the moments I watch him walk and talk and run and eat and remember after being told that he may never do those again. All of these moments are beautiful and undeserved treasures in the midst of the shadows, and sometimes, we even capture them on camera, so that someday, when we wake from this blur, we’ll look back and remember that there were moments of beautiful.
I am not naive. My taking joy in those moments in no way indicates a lack of understanding of the cancer horror. My response is not static or stoic. I feel the pain deeply, but I must choose the joy because there is purpose in our suffering and that is what I pray to continue to seek every day…
Moment by moment.
“For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.” 1 Corinthians 13:12
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.
“Dad, Chasey is crying in his bed and he won’t stop moving.”
With these words of a frightened child a year ago came the unheard sound of life forever changed. A season of watchful anxiety with no answers silently became a parent’s worst nightmare as we were thrown into a path on which there is no escape, no turning back, and no foreseeable end in sight.
The path is dim and lined with shadows: of lost dreams and old lives, of malignancy and pain, of a terminal condition always a breath away. And yet, God’s grace and goodness to us is woven into this tapestry of pain in ten thousand reasons for our heart to find.
Truly, there is no better sum for the year than this…
“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I hear the thunders role. But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise. O, this is life! O this is joy, my God to find Thee so: Thy face to see, Thy voice to hear, and all Thy love to know.”Horatious Bonar
Thank you for walking this first year with us, moment by moment.
[As many of you know, Chase’s favorite song is Matt Redman’s “10,000 Reasons.” I hope this very slight picture of the year blesses you as it does us. Trace the faithfulness and joy with us… God is good.
