This past week, we finally finished up all of Chase’s follow up appointments from his January MRI. I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway. He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.
Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)
Before the end of July, Chase needs to do the following:
Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
Have an echo to check his heart for chemo damage
Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
Possibly have an ear surgery
Have another audiology test to determine if he needs some type of hearing assistance
Have blood work done for at least two of his doctors
Have a full brain/spine MRI
Meet with his neuro-oncology team
Meet with his neurosurgeon
Meet with his endocrinologist
And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.
What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates. Currently, my calendar makes me want to go hide somewhere.
The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.
Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
Hug a cancer survivor. Today, please. This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either. So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.
Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.
“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6
Moment by moment…
{Below: some pictures from our clinic day at the hospital}
Calmly, the super hero makes his way through the metropolis…Chase taking a “selfie” with his Nurse Wendy, our family’s brain tumor coordinator and a part of our heart.Chase and his friend, Matthew, meet up and play “got your nose” in the Crowne Sky Garden after their appointments.
The year I turned eight was the year my mom was pregnant with my last little sister. I was old enough to understand and be excited and each new and frosty December morning, I would run to my bedroom window to see if Miss Becky’s car was in the driveway. If her car was there, it meant my parents had gone to the hospital and my new baby sister had arrived.
Miss Becky went to church with us. I remember that her husband -Mr. Tim- was very, very tall to us, that one time, we went over to her apartment to help her get a cake in the shape of lamb for a baby shower, and that she had a huge smile and an infectious laugh. She also loved to talk about Jesus. But not how most people I knew talked about Jesus. She talked about him as if he was a precious friend, someone she really knew and loved and interacted with – much the same way I would talk about the friends I played with after school.
It was around the same time that I first have memories of her that Miss Becky got sick. She had something I had never heard of before, but I knew it must have been serious because I could see great concern on the faces of the adults when they spoke about it. They said my Miss Becky had something called cancer.
I remember that her hair looked different for a while but nobody ever told me that it was a wig. Kids don’t always get told those kind of things. And of course, I had no knowledge of things like procedures or chemotherapies, but almost every night, during our family times, we’d pray for Miss Becky to be healed from this strange thing called cancer.
Me with my precious “Miss Becky”
Our precious Miss Becky won her battle with what I now know was breast cancer while I was still very young. The years passed and she had children of her own and our families ended up at different churches. It would be years before I’d see her again.
When Chase was diagnosed with cancer, Becky was on the front lines of those who prayed for us and encouraged us. Cancer can make things very personal and re-knit friendships just in the shared experience. She knew what it was like for my Chasey to have the chemo taste in his mouth, the chemo-induced neuropathy that made his hands and feet tingle like they were asleep, and the hard, long days in the hospital. She knew and she prayed for us.
When Chase finished treatment, we saw each other at a party and I watched her watch Chase as he ran up and down the length of the gymnasium. Her, with the beautiful, big smile and marvel of his energy and life. And we talked about how she’d been free herself for twenty-six years.
We saw each other again last summer at the ball park and we picked up right where we’d left off. She always encouraged Chase in such a beautiful way, making a big deal about his battle even though she’d fought her own. And her smile was as big as ever and her love for Jesus was as real as ever.
Chase, Becky, Darcy and Karsten at the ball park
But not so very long ago, after twenty-eight full years, there were tests, and confirmation, and then a quiet picture of a beloved and dog-eared page of her bible –
“…that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.” 2 Corinthians 1:9-11
Next to these words were written two dates – “11/87” and “10/15”. The implication was clear: the reprieve was over and Becky’s cancer was back.
Even as I write, she is in the middle of this second fight, but as it has unfolded and she’s let us have a glimpse into this second journey with her, it’s been an amazing honor to witness. She’s honest about the tears and weakness, but she’s also honest about her joys and her love for Jesus is clear throughout her words. After I posted a picture of Chase going to his hospital dressed as pirate last week, she sent me this picture in return…
Becky with her oncologist
Inspired by Chase’s fun, she’d found a fun way to show her courage and strength as well. And this beautiful woman clearly rocks a head scarf like none other.
All these seemingly flailing string ends, pieces of lives and stories so senselessly hit with diseases like cancer; I believe they’re being braided and woven into a tapestry we just can’t see or understand yet and it includes tiny bits like pirate costumes.
Because sometimes, it takes an eye patch to get just a hinted glimpse of the goodness of God in weaving our lives together – even in the pain.
Becky’s twice-proved courage, Chase’s strength, and God’s grace . . . moment by moment.
“That which tears open our souls, those holes that splatter our sight, may actually become the thin, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave.” Ann Voskamp
** For more on Becky’s life and faith, visit: https://byfaithbecky.wordpress.com/ **
As he stood before me, he nodded somewhat unwillingly. “Okay, fine. Just one picture…”
Chase was going to “his hospital”, and he was going as a pirate. Because nothing says “this is who I am” like a pirate costume. Due to a slight cold, I would not be joining them on the oncology floor that day and so it was extra special because it was “time for just Chase and Daddy” – the very best.
Occasionally, I drop hints in my writing about Chase’s aggression and I have trouble doing much more than that for several reasons. I think mostly because there is rarely any redemption or beauty that would benefit you from reading about it in greater detail. It is sad and ugly and Chase is deeply ashamed of it. Whenever we talk about what happened during his angry moments, he dissolves into genuine tears, promising never ever to do it again.
And so, there has become this other quiet side to our lives that in some way seems less real because I don’t write or talk about it the same as I do other facets, and yet, it is extremely real and taxing in our home and on our family.
Over the years, Bob and I have experienced shock and judgement on the occasions when Chase’s struggle rears it’s head in public. There are comments and suggestions, and the response that always breaks me a little: tears and the quietly whispered aside – “I don’t know what to say but I’ll pray”. I think I’d say that same thing to me if I were seeing it from the outside for the first time too.
And over the years, as people have witnessed the struggle in hospital and out, we’ve been told that we as parents were overindulgent and we must be spoiling him, that Chase needed boundaries, that he needed more control over life choices, that we were giving him too many choices, that we weren’t treating him normally, that we were treating him too normally, that the anger was his reaction to the out-of-control-ness of life in cancer treatment, that it might be the anti seizure medication he takes every day, that it stemmed from anxiety, that we needed to change his diet, that we needed to change his supplements, that we needed to change his environment, that it could be circumstantial, and various other things.
One of the hard, out of control moments
We’ve thought many times about getting help for him, but weren’t even sure what “help” should look like or who should provide it. We were often told that he was too young and his brain was still developing too much for anything to be of assistance, and were even told at one point that some specialists had no paradigm for a child who’d been through the extreme brain and emotional trauma that Chase had experienced. It was as if everybody knew on some level that it was happening, but nobody knew how to deal with it or what was at it’s root. A very isolating feeling.
Hearing that it was something we were doing was especially difficult. In the first week that Chase was diagnosed, Bob and I had determined that one of the very best gifts that we could give him was the gift of normal. His life had become extraordinary and we desired to keep that out of his way as much as we could, and so, we instituted loving boundaries in and around the chemo and treatment. How do you give a “time out” to a child whose life is a giant hospital bed punishment? You can’t… but maybe if a toy got thrown in anger, then the toy went into time out for a few minutes. Small things like that – the things that made him like his brothers and sister, like the other kids outside the hospital walls. But it was a constantly changing situation in which we were (and still are) always having to weigh out what’s chemo damage, what’s tumor damage, and what’s Chase. It was during this early season that I found the phrase I love so well: “There are only so many hills you can die on.” But despite our efforts, the rages continued unchecked. We felt like we were doing everything good parents were supposed to do. How was this our fault?
We plunged forward and fought these fights ever week and sometimes every day, and yet, we’ve felt largely unheard. Not because anybody’s ignoring us, but because I truly believe that the pediatric cancer survivor field is still significantly unfolding in this area. Think about it: Chase’s cancer has only been defined by name for about twenty years and it’s only been about seven since his treatment began as a clinical trial, changing statistics from completely terminal to marginally terminal, and suddenly, Chase’s generation of survivors are living long enough to really see what happens after the dust settles. Some days, our lives feels like the cancer equivalent of the old Oregon Trail – where we just circle up the wagons and try to survive.
Bob and I often liken Chase and his treatment to a house fire. When he was rushed in with his large mass, he was a house consumed. The teams of doctors were almost like teams of fire fighters, working collectively to extinguish the deadly blaze on all levels. You do what you have to do to save. And then we were done and thankful… But, who helps rebuild the house? You can’t expect the firefighters to do that for you.
Chase works with a occupational therapist during chemotherapy [photo credit: Cameron Dantley]
This is ultimately what lead to Chase going to the hospital as a pirate this cold winter morning – we were on a search for builders – master builders. (Sorry, this is what happens when you’ve watched The Lego Movie a couple hundred times with your kids) It was time to work at rebuilding and Chase’s primary team of doctors had recommended that he was now old enough for a neuropsychology evaluation. We were cautiously optimistic, having been warned that it may not explain his aggression, but would definitely show some of his strengths, weaknesses, and how he learned. But we could still hope. Maybe there would be something – anything – that could provide us with a clue as to how we could help him.
And so it began, hours of testing, piles of paperwork, and then a two hour meeting for which I was conferenced in. And Chase sat in the back of the doctor’s office and over the speaker on Bob’s phone, I could hear Matt Redman singing “10,000 Reasons” from the iPad. Some things never change. But what we learned in the meeting was both life changing and life amazing.
I marvel how so many cancer parents know exactly where their child’s tumor was located in the brain. I am not one of those parents. I asked some other crazy and weird stuff at the time of his diagnosis, but I never asked exactly where the tumor was located. At 6cm with midline shift and tumor cell metastasis, it seemed to be everywhere. Which is why it stopped me dead in my tracks to realize for the first time in three years that Chase’s tumor decimated his language center. Did you hear that? Chase shouldn’t be able to talk. I need to say that again because I want it to really sink in. Chase shouldn’t be able to talk. Those of you who have met Chase know the truth, and I’d like to think that through this blog, even those of you who haven’t met Chase know the truth. Chase talks. Oh my word, does he talk! And well, too. So take just a moment and breathe in this insane miracle of a brain that, freshly cut and traumatized, made the decision to move knowledge to a safer area, and compensating for itself, retained power of speech even after hours of being open on an operating table. God is good.
But the damage and the compensation and the radiation all carried a price and it had to come from somewhere. In this meeting, we found out that it had been taken out of a few areas, including Chase’s executive functions – his emotional regulation.
What followed were long and breath-taking explanations in which instance upon encounter began to click into focus and understanding for us, and several times, I was tempted to burst into tears on the conferenced call just because the meeting was the most incredible revelation.
There are only so many times you can be told that you’re doing something wrong as a parent before you begin to believe it, and this meeting was the first time in a very long time that it was acknowledged and known beyond a shadow of a doubt that Chase’s aggression isn’t due to something we’re doing or not doing. There is damage, it is real, and we learned that there might actually be ways to heal, or at the very least, help.
There is not a magic cure. The process of working with a traumatized brain like Chase’s is a life-long one. There will be more therapies, more meetings, and possibly even medication to help retrain and replace some of what has been lost. And this will change and grow as Chase changes and grows.
So why do I share all of this? First, because if someone had told me three years ago that survival would be this complicated, I wouldn’t have believed them. And there are a lot of struggling survivors around almost all of us, so look to them with understanding and grace. Second, neurological issues are often simple in their exhibited symptoms yet mind-blowing in their actual complexity. So, the next time you’re in a store and you watch a mom deal with a screaming, wailing, kicking, on-the-floor child, know in your own heart and mind that it could indeed be an issue of boundaries and you might do something different if it were your child…or it could be that her child’s shirt hides multiple port scars and his hat covers a giant resection scar and that mama is dying just a tiny bit inside because she doesn’t know why he’s on the ground, what made the anger so great over something so small. And as you watch her, know that she’s been to places that broke her and she’s being broken once again in the aisles of a store and she wishes for just a second that things were different.
We are so deeply thankful because, three years ago, we didn’t even know if Chase would live let alone function, but we are weary parents, and the bald pirate has a long road of work ahead. So we rely on neurological sciences, survivor breakthroughs, and prayer – knowing that our seemingly accidental stumbling through it all is part of a good and hope-filled master plan. And we begin yet another facet of this life . . . moment by moment.
“…More than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions.” – St. Baldrick’s Foundation
“Okay, let’s just get your temperature and then you’ll be done.” The nurse turned from the blood pressure cuff attached to Aidan’s skinny arm and grabbed the thermometer, shoving it into a sanitary plastic sheath with a soft click.
“Open wide . . . under your tongue . . . now close.”
The room was still as Aidan sat tall, silent, and brave (despite his strep throat) on the end of the exam table.
With an unusual calm, Chase pulled himself out of the chair against the wall where he’d been sitting next to me, and he went to stand closer to the table – in his older brother’s field of vision.
“I’m here, Aidy,” his pet name for his near twin from the earliest days of learning speech. “I’m here if you need me. It isn’t scary, but if you get afraid, I’ll be right here.” Nearly the identical words a three-year-old Aidan had spoken countless times over a two-year-old Chase during myriad blood draws and hard hospital days. “I’m here.” I choose to put myself next to you and try to understand.
Cancer starts as these tiny microscopic cells that go terribly wrong and it wrecks so much life. It makes me angry to consider its senselessness. But in this moment of family practice and strep throat and a check for vital signs, there was yet another glimpse of beauty in the devastation they’d caused. The boys have been bent by it – we’ve all been bent by it – but in those times when it really counts, especially when it comes down to a doctor’s office, they bend toward each other. They reach with comfort and love for one another. And care for each other has come from the long years of fear and pain.
I believe there will always be something good that comes of it all and that the God-purposes far exceed the effect of microscopic cells. . . moment by moment.
“You intended to harm me, but God intended it all for good.” Genesis 50:20a
He walked into the room and sighed loud and long, his little way of reminding me that he was here and waiting to be noticed.
Turning from making the bed, I acknowledged him.
“Hey, Chasey-bear, what’s up?”
With hands at his sides and head lowered, he spoke the words, “Today on the bus.”
I waited for a second and when nothing followed, I bent into his pattern, pieces of a sentence stated, pieces of a sentence repeated. This is his way. “Today on the bus?”
“Yes. Ian and Aden.”
“Ian and Aden?”
They said I was short and they made fun of me for being so tiny.”
I stopped still.
How do you react when you want to be justice for your children and it’s already too late?
The words were already said and heard. “Oh sweet boy . . . what did you do? What did you say?
He hung his head, but his voice was steady. “I did not yell and I did not scream.”
“Not even a bit?” I tried to see his face.
“Nope. No screaming.” He put a hand to his chest. “But my heart.”
“Your heart?”
His dropped again. The single word burning as he spoke: “Hurts.”
Some days the truth is not spoken lovingly, but hurled like a weapon and it stings.
How do you prepare a child to stand strong when all that makes him beautiful stands out differently from the children around him?
It will take a great deal of strength to meet these thrown words with grace. And he will need to do it often, I’m sure. I’ve seen how the other children look at him on the playground, and I hear them ask simple and honest “Why doesn’t he have hair like us?” They cannot know that their simplicity is painful because it’s complicated for us.
It’s funny how we want to be proud of our scars, but we’re still keenly aware of their unique quality and it bothers us. It’s too easy to compare, come up short, and sometimes even lash out as we feel our own differences.
This day, Chase succeeded. He did not scream – a huge victory for my small boy, I know. There will be times to speak up, but this day, it was better to be quiet.
And at the end of it, I don’t care how far off the ground his head stands; he can hold it high because he did the right thing.
