cancer – Page 18 – 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

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.

The Two Doors

“The prognosis for AT/RT has been very poor, although there are some indications that an IRSIII-based therapy can produce long-term survival (60 to 72 months). Two-year survival is less than 20%, average survival postoperatively is 11 months, and doctors often recommend palliative care, especially with younger children because of the poor outcomes.” -Wikipedia on Atypical Teratoid Rhabdoid Tumor

Tomorrow, February 6th, is Chase’s first truly post-treatment MRI. The first real chemo-is-all-out-of-your-system, three-months-without-a-single-drug-to-guard-against-relapse, have-your-sleep-patterns-changed, why-did-you-forget-that-word, you-fell-twice-yesterday… MRI.

Tomorrow, there will be two doors. Behind Door #1 is the clear scan and the sigh of relief and the three month wait until next time. Behind Door #2 is relapse and all the possibilities that it brings. Writing that thought down leaves me sick to my stomach, but the truth is, we’ve known about Door #2 since the early days of August 2012. So, even if it comes to that horror, there will likely be few surprises.

People say in mistaken comfort “Yes, but what are the chances…?” For a parent of a child that only ever had a hairs-breadth percentage of getting cancer and this cancer and surviving this cancer, the chances hold no comfort at all.

The only comfort is in knowing that I am invited to bring my worry to God, and then not worry about it anymore, because He will guard my heart and my mind. The only comfort is knowing that all of our days were counted and known before we ever breathed, that we were fearfully and wonderfully created, and our very souls cry out with that thought. The only comfort is knowing that all our pain and suffering is but an earth-moment, and then we’ll stand in the presence of our Savior, understanding the promises and knowing no more pain or sorrow or tears–only closeness to Him forever.

I know those truths. I believe those truths. But as I stand in front of these two doors, my heart is still heavy… what now?

BE STILL… WAIT… BE SILENT.

“The Lord will fight for you, and you have only to be silent.” Exodus 14:14

Silence? My make-it-better, make-it-stop, never-give-in heart wants no part of that. Silence is accepting defeat. Silence is acquiescing… isn’t it? Being silent is one of the hardest things for me to do, yet I’m called to do it in this moment. And as I obey, not speaking becomes speaking. The quiet becomes loud. We will watch and see what unfolds as we remember how far we’ve come, and know beyond a shadow of doubt that the same grace that covered all waits always, ahead of us, behind any door.

The doors are in place as they always have been and will be… The right thoughts are known and remembered time and again… and now?

We wait for what He will show us in His time.

We are silent… Moment by moment.

World Cancer Day

Today is World Cancer Day.

Today is a day we set aside to count our blessings and stand for the fighters. We stand for Julia and Phoebe and Cal and so many others who won their fight and are finally home. We stand for Matthew and Mia and Lucas and Zeke and so many others who continue their fight right here even now. And we never give up. Because there is strength and purpose in what we’ve been given (horrible as it is) and we believe that someday, whether in heaven or on earth, there will be no more cancer. So we mark this day and stand.

For whom do you stand today?

Moment by moment.