One year ago tonight, I sat on the side of our home church sanctuary, watching Darcy and Aidan finish their Awana year. In my arms lay a limp and sometimes whimpering Chase. It was the tenth day since his last chemo cycle and his counts were obviously plummeting; but masked, attached to his IV, too weak to stand and in strong discomfort, he refused to leave until he’d heard Darcy and Aidan’s names read for their awards.
When Darcy’s name was called at long last (as Aidan’s had been called several minutes earlier), he sighed, fussed, and begged to go home – his little body starting to burn with fever. Within an hour, we’d be one our way to the hospital and late this night a year ago, he’d be admitted for many days to fight infection and the chemo toll.
I’ve been thinking of those year ago moments with him in my arms all day today. And now, one year later, THIS…
Great is our Lord and abundant in power. Psalm 147:5
Abundant indeed that he who should have no memory can stand and speak, having memorized these words. I stand in awe…
The brothers eat gummies and pick late night movies to help keep Chase awake
Yesterday’s EEG -a test we were told would take 4-6 hours- lasted a full 8 hours.
This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.
For Chase, who was being video-monitored (in addition to the electrodes covering his head), this meant about a 2 foot range of motion on the bed…for 8 full hours.
Chase. Being still. For 8 hours. Ha.
Sleeping peacefully. An answer to prayer as sleep is an important component of the test.
Actually, he did incredibly well considering the circumstances. It was a grueling day for him and he managed it with a great attitude.
There are few things that a lollipop and coloring time won’t make better…even a head full of electrodes. 🙂
We haven’t done this test since the initial days of his diagnosis – haven’t kept him up late into the night since two days before we found out he had a tumor and I was amazed how going through the ritual again brought back the memories of those sleep deprived, scared hours when we first felt the dread of some unknown thing being very wrong with our little boy. And then the memories passed and we had a great sense of peace and even joy in the middle of the long night and day.
We hope to hear some results within the week and will be able to discuss a plan of action with the epilepsy specialist in early April. Thank you for your prayers.
For some time now, these words have refused to come out. The unknown, undefined place we’ve inhabited post-treatment has been crippling to my writing because I haven’t known what I’m writing about any more. I was reminded this week that life is a journey and my heart is to honestly chronicle my way through it – whatever it may bring. With that reminder, the words finally came and I could write out the struggle.
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11
“His counts are in normal range”; “You can return to normal activities”; “You should treat him like a normal boy”; “Not being in this hospital is good…it’s normal”… Normal, normal, normal…
We keep hearing this word; they keep using this word; but to quote the great Inigo Montoya: “You keep using this word. I do not think it means what you think it means.”
I look at Chase – at the scar, at the hair that’s trying to grow past radiated skin. I watch him – how he struggles to hear a whisper even when we speak directly in his ear, how his mood swings, how his words jumble and garble. Excuse me for sounding skeptical, but this is normal? Do normal children have to have medical clearance from teams of specialists just to get their teeth cleaned? (a true story of how several hours in my week went down)
I remember clear as day – sitting on the couch in his PICU room in the dawn before brain surgery and wishing for normal. I confronted that wish and had to put it aside. “There is no normal. There is only Christ.” And now normal is being handed back to us…and it’s terrifying.
My brain whispers that Chase could have been dead. He could have been unable to walk, unable to speak, unable to do a hundred other things. My thoughts turn to all that could have been and all the cancer children who have stopped breathing since Chase was diagnosed and I can hardly breathe myself. The anger and frustration flares… How dare I ask where we are and where we’re going? How dare I? What right have we to wonder? Is it not enough that we’re the ones who still breathe?
But we do wonder. It feels thankless and rude, but we do. We are beings created for a purpose and we chafe and fight against this normal not-normal life that at times feels so purposeless. We no longer belong to the world we inhabited pre-diagnosis. Those people have been ripped apart and rebuilt time and again with new eyes, hearts and focus. But we no longer belong to the world we inhabited during treatment. How do we use our changed lives? Where do we belong?
The truth is that I don’t know. I believe that the answer is something that is still unfolding. And while it unfolds and we wait with hope… this:
For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. Ephesians 2:10
We were made by God for good things. Good things that He planned for us to do long before we ever breathed. He planned them for us, so we can’t miss them or mess them up. He planned them.
Breathe.
There is a plan. It won’t be normal, but it will be good.
Some time ago, I wrote about a very painful, very personal aspect of Chase’s post-diagnosis life: his aggression. At the time, it mixed with low blood counts, treatment pain, and seemed to be a general side effect of being a small person thrown into a world of superhuman tasks. But then the treatment went away, and the counts went up, and he grows stronger and healthier all the time, and the aggression stays. In fact, it’s intensified as his strength has grown.
Chase has always been a strong fighter. If I’ve said this once, I’ve said it a hundred times. This, we know. But, at times, there seems to be something other than personality fueling this fight. We watch him completely, violently lose his temper and then start crying because he knows he was wrong…only to lose it again a moment later and start weeping all over again saying, “I don’t want to be angry anymore! I’m so sorry!”
Our search to help Chase has led to the discovery that his anti-seizure medication is known for causing outbursts and aggression as potential side effects. In the months following chemo, we’ve spoken many times with many sources about his behavior and after having diligently pursued natural and behavioral options, have finally come to the point of doing an EEG.
So, on Monday, Chase will be going to the hospital for 4-6 hours of continuous EEG monitoring. The goal is to see how his brain is doing and to determine if switching his anti-seizure medication – or weaning him off of it entirely – is a possibility.
A very real concern is that Chase’s brain -which has never not been protected by an anti-seizure drug- would, if weaned, react to the trauma it went through almost two years ago (and the scar tissue around the tumor site) and that such a status change could actually cause seizures and more brain trauma.
We’d greatly appreciate prayer for wisdom and discernment – for us as Chase’s parents, as well as his doctor to know what is just Chase’s personality, what is a side effect of brain trauma, what is this medicine, and how much, if any of it, can be fixed.
Chase was born to fight. Our desire as his parents is to optimize his life on this planet and provide an atmosphere in which he’s able to channel the fight.
God, give us grace to accept whatever is ahead on this particular road…
Long before his birth, the adults around him had prayed for a building in which to have their church. Now, the prayer was answered. The old building had been stripped and tooled, fashioned and made new by the loving hands of the community, all but ready for the gathering. The flooring has yet to be laid and the pastor gathered them and challenged… Write. Write a prayer on the floor before it’s covered. Write your heart in faith for what God will do in this place. And so the 8 year old boy crouched on the cold stone and wrote the prayer that came to his heart…
“Dear Lord, I pray Chase Ewalt survives his canser and they will find a cure – Life in God.”
They say that love can heal the broken, they say that hope can make you see. They say that faith can find a Savior if you would follow and believe…with faith like a child. -Jars of Clay
