Chase – Page 18 – CHASE AWAY CANCER

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

The Shortest Radiology Report

CLEAR! Praise God the MRI is CLEAR!

We are so blessed to get to walk through Door #1 this February day!

After being warned of almost imminent relapse and today being a significant milestone to reach without threatened relapse, Chase has once again surpassed expectations with “the shortest radiology report” they’ve seen in a while. His brain and spine looked great and there was literally nothing to report.

We are so thankful for all the love and prayers as we waited this news in silence.

God is good.

More to follow…

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.

The Little Big Things

When you have a 6cm brain tumor removed at 2.5 years of age and go through months and months of rigorous treatment, all bets are off regarding development. Often, you hope for delays “at best” as the worst is too hard to think about unless forced to do so.

Last night, I sat across from Chase as he made valiant attempts to match and fold his favorite yellow hospital socks and this morning, as he placed another Superman sticker on his “potty chart” I stopped and I marveled. These things are small and normal milestones to most children, but for Chase, and for all cancer kids, some of these things are beyond huge.

You see, it wasn’t too long ago that teams of doctors waited post-surgery to see if he’d even wake up…or talk…or walk. Celebrating these little big things today.

Moment by moment.

Joy In The Mirror

We sat at the long table in the restaurant. A table full of friends who had invited us to join them and we’d agreed. I looked at Bob and he looked at me over the wiggly, wriggling heads struggling to sit still like grown-ups do. How crazy were we to say yes to a restaurant with three little boys in tow?

Chase especially struggles to sit still (a running family joke given his name), and so he’d sit for a while at the table and then as a reward, I’d get him up and let him walk around and back before sitting a spell again. And I watched people watch him… His shoes are like the shoes of other boys, his clothes and eyes and energy and everything else…and then his white, white head and the slightly faded, but oh so noticeable scar that runs the length of skull and you can see the looks of pity, the politely averted eyes. I don’t blame them. I’d do the same thing. I find myself wanting to run up to them and say “It’s okay! Look all you want! This is a miracle in front of you!“, but instead, I smile, move on and caution Chase not to trip the servers in his enthusiastic dash.

You see, sometimes being out in public with a visibly chemo-worn child is like stepping in front of a mirror. When we’re home or with good friends, we’re just us and everybody knows Chase. But when we step out, like that day in the restaurant, it’s a mirror. Stop. Look. We’re different. This scar says our life looks nothing like yours. The loudest of reminders in the slightest of glances.

And then, a family approached our table. They spoke of mutual friends and places from years past, they knew Chase from his Facebook page and they prayed for him and they’d recognized him. And then they encouraged us with their words and pressed a gift card into our hands. “Your lunch is on us“, they said. And then they were gone.

The gift card sits as a reminder with my papers – you just never know. There in the mirror that day, there was fellowship and joy because of the recognizable scar.

So pay it forward, play it back, make it right, stop to help – don’t be afraid to make eye contact because you never know when you might be staring at a miracle. And you might be stepping next to a battered parent in front of a battered mirror and showing them joy.