CHASE AWAY CANCER

Finding Purpose: The Normal, Not-Normal Life

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.

And we’ll take it moment by moment.

To Channel The Fight

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…

Moment by moment.

The last continuous EEG - July 31, 2012 — The last continuous EEG – July 31, 2012

Throw Back

Throw back…to the days when this covered his face and screwed his sleeping head to a radiation table. Throw back…to the 33 days when “X” marked the tumor spot and he’d whisper “I’m so brave” with a sigh as he sank into oblivion every morning. The mask has no earthly use now, but I keep it because I can still see the outline of his precious little face and every time I look at it, I’m reminded of what an incredible, awful, and somehow amazing season that was. … #tbt

-MbM-

Please Pray

Summer 2013

“Please pray”, the status read. The paragraph on a friend’s Facebook went on to detail the sweet little girl, a friend and a classmate, rushed to the hospital and even then in surgery to remove a brain tumor. Please pray…

“Please pray”, the man said. That same night, on our way into the emergency room for Chase, we met a friend: a brave man who rides fast and sure under the flashing lights that bring the littles to the hospital’s safe haven. He said he’d been out by us that day and he couldn’t say who or what, but he said: “Please pray.”

A few days later, I went up to the neurosurgery floor and asked… Upon being ushered into a darkened room, I saw the sweet little girl laying propped on pillows, her beautiful dark hair pulled aside; the back of her head shaved from the surgery. She had yet to regain full movement. She should have been in a classroom with her friends as she’d been a moment ago…not in this room. The exhausted, shocked look in the parents’ eyes mirrored feelings I remembered all too well in those initial days and I asked what we could do and they said: “Please pray.”

On a crisp Fall day months later, the last of Chase’s chemo days, I saw the mom of the sweet little girl in the hospital hall and we hugged and spoke of the future. She asked me what was ahead and I told her my heart and said: “Please pray.”

Just a few days ago, the email came. The treatment for metastatic medulloblastoma was complete and the sweet little girl who fought since that first Summer day would soon be free of the hospital life and we prayed with great joy that night.

And then came the news. A late night fever of 105. A sure sign that illness and infections had set in on a tiny body that knew no immunity. Too soon after the chemo, there was nothing left with which to fight and the medical minds began the rush against time and infection to understand. Yet she fights! Though the situation grows more serious and she moves to the unit for intensive care, she fight on! And I asked her mom – her strong and amazing mom who clings to hope and faith in extraordinary, awful circumstances – what can we do? …and she said: “Please pray.”

Please pray for Kayla.

Moment by moment.

I believe that I shall look upon the goodness of the Lord

in the land of the living! Psalm 27:13

Like A Child

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." — “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

Moment by moment.