This is the least favorite part for my own heart, and yet my most favorite part for the sake of Chase’s heart and body too. Because for every month that goes by watching, it is one less month that Chase gets put into procedures, surgeries, and more tests.
So we will wait and watch the mole grow on his back for now – the other moles and freckles grow on other parts of his oh so fair skin for now.
No skin cancer today.
We will take it today.
And as I sat in the rain on the highway under the gray sky with Chase near asleep in the back seat, I called Bob and told him the news and he responded: “Does this mean we’re officially back to only one active cancer now?”
And for now, dear ones, I think it does mean exactly that. Chase’s thyroid cancer was sitting in a couple lymph nodes around the thyroid site in March, so he will most likely have a full body scan yet this calendar year, and we do not yet know why he still has seizures, why he is tired so much, why he bruises like this, or why he is having trouble gaining weight.
We may never know some of these things, but we will continue…
I remember the August 10th day specifically because there was a bad storm. It was hot, humid, and dark the afternoon a summer thunderstorm hiding a tornado ripped through our suburban town, taking trees and power and the downtown church steeple along with it.
Our family packed bags in the dark and went to stay somewhere with electricity and internet, but I remember the date because it was the first time I saw Chase’s bruises.
That night, at the grandparents’ house, as I bent over Chase to inject the growth hormone into his upper thigh, I realized that there were small purple and black marks along his white skin – almost as if the nightly injections were causing injury. If they were on his shins, I might have looked to his brothers, because young boys are always running into and over things, but these were up too high, too far away from regular contact areas.
So, the next day, I spent long moments on the phone with multiple hospital teams. And somehow, in the next few weeks, they changed the injection medication and checked all the other medications from every other discipline he sees. But nothing matched, and Chase began to lose weight, complaining of stomach pain all the time.
All of the gastro tests came back fine, and then the preliminary bloodwork for blood cancers came back fine. And we talked about other, more invasive options for testing, but it seemed like there was too little to go on. So we waited.
For two months, we waited.
It turns out that sometimes time proves to be its own answer. Because the longer the bruising lasted, the more worrisome it became, simply for continuing. Not the worrisome of a terrifying specter, but more that of a niggling doubt – the quiet “what if” whisper that keeps you up at night.
So, after two months, the teams finally scheduled Chase for a bone marrow biopsy. It was time to conclusively rule out things like blood cancer, marrow cancer, and even the possibility that the thyroid cancer still tucked into lymph nodes around his throat had found his bones too.
And on Friday afternoon, Chase’s preliminary results were released…
He is clear of these scary cancer pieces and we are so thankful.
After two months of no answers, we now know what it isn’t – and with a child like Chase, that is abigvictory. So, for now, we are watching Chase’s diet and skin very carefully. Lab results show his nutrients are near perfect, despite his weight loss, and we continue to work with his teams to take care of him and make the best of whatever this is – secure, for the moment, in what it is not.
So, after two months, it would seem we can finally take a deep breath, finally just settle down to another school year, and time with the family, and just being…
However, on the day of Chase’s biopsy, the doctor performing the procedure came to speak to me while he was in recovery – two days before we found out his results. “Have you had that mole along his spine checked?” Her face was quite serious. “I don’t want to alarm you, but that is right along where he was radiated and I think you need to get it checked as soon as possible.”
Oh, dear ones, so, it would seem that we put one round of cancer concerns to rest only to begin another on Monday afternoon when he sees his oncology team with a dermatologist. And yes, skin cancer does not hold the deep fear of bone or blood cancer, but when I told Chase, he scrunched up his nose with a little growl and said; “toomanycancers”. And he is not wrong.
When the doctor left the procedure room after telling me to check his skin, I actually laughed, not because it was funny, but because coming out of the operating room on an exploration for leukemia and worrying instead about skin cancer felt utterly ludicrous to me!
There simply aren’t words in this language to express the sheer insanity of this cancerous journey we seem to continuously be on. It is horrific, which is why we acknowledge research efforts, awareness months, and so many stories around us.
But Chase’s journey is also precious because he lives and the story has never been so clearly and apparently out of our hands. He could have been totally healed a hundred times now, and he could have been gone at least a dozen times I can think of in the last decade, and yet, Chase is still here and the journey continues. And I don’t know the reason, but I believe there is at least one, if not a hundred…or ten thousand.
So, yes, it is “too many cancers”, but nothing is “too many” for our loving Father.
Purpose in the journey…hope along the way…choosing thankfulness with defiance… moment by moment.
“You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.”
When they took him back to the operating room, I kissed his fuzzy head, skin-to-skin muted by the paper of the masks we all wore, and I whispered “I love you most.” But Chase is Chase, so as they slid his bed through the doors and away from me, he called back “I love you more than that!”
Thank you for all the love and prayers this week, dear ones. Wednesday was a long day, but a peaceful one too.
There is a chance that some results of this bone marrow biopsy might come back within a few days, but most will probably take a week or more.
And until then, beyond then, for always, we wait with hope…
There is a patch of dirt that lies under the front windows of our little blue and brick house. It borders the sidewalk that runs from the door to the driveway and in this place, beneath the shallow layer of dirt lies very old concrete. And on top of the concrete are small landscaping stones long buried. Very little grows in this small place besides weeds. The weeds come every year no matter what I do, and they drive me a little crazy, because I like things clean and neat and orderly – especially when life feels anything but…
So each summer, sooner or later, I can be found on my hands and knees on the front walk, shoveling mulch and declaring war against new weeds.
This summer, not so very long ago, I was in the middle of my little war, hands stiff and crusting with that dried dirt feeling, when Chase came over to me.
He was out of breath from riding his bike and he doubled over next to where I crouched, his hands on his knees, arms stiff.
“Why are you worrying about this, Mom?”
I was not into this parenting moment, my voice pulling short like the torn roots in my hands. “Because, Chase.”
I reached for another weed, trying not to think about how tired he sounded from a normal activity, how white his skin looked despite the warm sun that should make it rosy from exertion.
“Mom…” His small hand landed on my shoulder then. His voice too old for his body. “Mom, don’t worry about the weeds.”
I can never resist his heart to reassure, my own melting at his words even as I stubbornly fought to explain. “Chase, this is part of my job…part of how I care for our house and our family.”
Could he not see how much I needed just one thing to be right, to go right, to line up in that moment?
He shook his head. “But Mom, sometimes there are weeds in life and it’s okay. Don’t worry about them. Just take a deep breath. It’ll be okay. Don’t worry about the weeds, Mom.”
Sometimes things aren’t the way we want them to be. The dirt patches of life feel too small, too clogged, too messy.
We toil and weep and things still crop up over …and over again.
Like weeds…
Like fear…
Like doubt…
It’s easy to get on our hands and knees over these places; to obsess.
But as Chase said… it’s okay, dear ones. At the end of the day, these weeds are a futility and not the ultimate focus. So weep, but don’t obsess, because there is a better rest to be had. Get up off your hands and knees and give the uprooted pieces to the One who can handle them better, best and forever …and take a deep breath.
Do you feel His hand on your shoulder?
Moment by moment.
“But when I am afraid, I will put my trust in You.”
Psalm 56:3 (NLT)
**On Wednesday, October 14th, Chase will be undergoing a bone marrow biopsy. Thank you for your prayers, dear ones. MbM.**
The screen of my phone showed large white numbers against the swirl of its green background.
5:32
Friday, October 2nd
The regular business hours are long minutes past now.
This will be the last time I pick up my phone and stare at the time for a while. My heart sinks as I accept the knowledge that there will most likely be no calls this week from Chase’s doctors. The waiting for this week has now officially timed out and all I can pray for is that the calls or emails or messages come through sometime next week – hopefully early next week.
This is not the week that Bob and I will learn why he keeps having seizures and what his EEG said about his brain waves.
This is not the day we will learn why he keeps bruising so easily and irregularly.
And sometimes I feel anger, but mostly, I just want to cry and cry out the building pressure because I count the bruises every day and I watch the concern on the phlebotomist’s face when he pulled the needle out of Chase’s hand on Friday morning and it takes longer than usual to stop the flow of blood as it soaks the gauze. And I want my phone to ring because I hate the reality of listening to Chase on his Google classroom call taking a reading assessment and tapping out for a few seconds to have a seizure and then going back to trying to read.
Life feels more wearisome than usual in this season. And while there is nothing terribly wrong, things do not feel terribly right either.
I hate the purgatory of the wait in that gray, lukewarm space. There are moments I plead with God because surely knowing something horrific would be better than knowing nothing at all.
Surely this is no fit way to pass the year, God. Surely this doesn’t work out well for any of us… for my heart, for Chase’s body, for your reputation, God.
This seems impossible. Inscrutable.
And dear ones, there doesn’t feel like a good way to end these thoughts in this moment because my phone is still sitting silent on my bedside table and the pit of my stomach still somersaults every time I think about it lighting up with the hospital number sometime this next week.
What if there’s bad news?
How might I feel about good news?
What if there’s no news at all and the answer is just to wait some more? …to watch a little longer yet?
I still want to cry my eyes out and I fight God a lot of the days and nights with these questions and many others like them. But today, I watched the livestream of a church brother stand behind the solid wood of the pulpit and bring my whole house of expectations and waiting down around me with these words about God’s impossible ways:
“Perhaps you have been on a flight, arriving at your destination, or at least above your destination. You are ready to begin your descent, but instead of descending, you wind up circling in the air. You can see the city below. It’s right there! You can see the lights! And perhaps you think ‘Why are we circling around forever? This seems pointless! We are literally just going around in circles!’ But we cannot see what air traffic control sees: six flights arriving at the same time, or a patch of turbulence just below, or snow plows clearing the runway. Calling the the Creator God to account for his sovereign, wise, but often inscrutable ways is like calling air traffic control to account while in a holding pattern. […] For our true life is not in demonstrating that God is somehow wrong in His decisions or apparent inactivity. Neither is our truest life or most enduring joy tied to becoming well informed on all the ins and outs of God’s hidden purposes. […] Our best good lies in God exercising his inscrutable wisdom as Creator and His incomparable mercy as redeemer for the everlasting good of us and of all creation.”
Dr. Dan Brendsel
In other words, the story is still unfolding. And just because it feels still doesn’t mean it has stopped moving. There are just layers we cannot yet see.
I still hate the wait, but I am encouraged in the reminder that it not forever.
In a holding pattern, it is disorienting and the minutes can feel like hours, but it is never so very long before you are safely home again. So we will wait a while longer yet…
