Breaking Down The MRI Results – VIDEO

We’ve now heard from all of Chase’s teams.

Here’s a little update with a breakdown of what happened with the MRI and what comes next.

And because I love you, I recorded a video instead of writing a blog. But don’t worry, I won’t leave my day job. xo

#MomentByMoment #ChaseAwayCancer

The Past, The Present, And A Virus

Chase is not known for sleeping.  Since the time the tumor first started growing when he was two, he often struggles to fall asleep at night and wakes long before the sun. From the moment his feet hit the floor, he’s going, doing, and often messing around.  

When he got off the bus on Tuesday afternoon, he didn’t ask to play outside, but came in quietly, telling me he loved me and missed me.  Don’t get me wrong – a docile, loving Chase is wonderful, but it’s also unusual.  Most often, he walks to the door fighting to stay outside with a verbal list of all the things he wants and needs to do as he hits the front stairs.  That night, as we sat down for family reading time, he laid his head on my lap and fell asleep . . .and then he slept ’til 6:30 in the morning.  When he woke, he did not speak much, but went back to his room almost immediately, laying curled in a blanket on the end of the bed. Within minutes, he was asleep again.

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My philosophy in a household of small children (read: boys) is “Fear The Silence” because it usually brings no good, and for Chase, this holds ten times as true.  He is never still unless something is wrong.  This child who sat at the breakfast table next to siblings without eating or talking – for twenty whole minutes – he looked like my child (only more pale), but I couldn’t find the pulse of his personality and that was terrifying.

Is there an increase in pressure within his skull?

Is something growing?

Is his speech changed?

Is he unsteady on his feet?

Does he seem cognizant of his surroundings and memories?

Could his hemoglobin have dropped?

Is he having any muscle tremors or signs of seizures?

Does his head hurt?

These are just a few of the well-worn panic paths my brain circles as I move into the routine of checking his forehead, looking down his throat, and asking where it hurts.  

It’s quite likely that Chase was just under a hint of a virus.  That’s another part of who he is.  The other kids get crabby or possibly lose their appetite when they get sick, but Chase . . . Chase gets “neuro”. His speech and sleep patterns change and he often grows even less tolerant than normal – all over something as simple as a runny nose.  

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And me? I worry.  That is my damage. I may stand still and breathe deep, but in my mind, I’m all-out sprinting across nightmare trails.  The years old sentence: “There’s a large mass” opened the gates wide to every conceivable worry – and often with good reason.  So once again, I ripped into the past to justify my present and by 9:00 in the morning, I was mentally on the ground, gasping for a saving thought or grace.

“Be anxious for nothing” – Yes, it’s in the Bible and sometimes I don’t know why because sometimes it feels unmercifully impossible.  But like every other word in there, it has purpose and it cheers me greatly to think that God put it in there because He knew we’d struggle.  And how I struggle.    

This morning, Chase beat the sun by a good half hour and was back to his doing, going, and messing self, boarding the bus with a smile.  It was most likely just a little virus.  

And for me, there’s the quiet, hard knowledge that there is no end in sight. At this point, the only best cure for cancer and worry is heaven. I’ll probably go back to his diagnosis every single time something is even slightly off and I’ll worry myself up until I’m panicking on the ground again and hate myself for it.

And then I’ll need to hand it over once again, give it up to God who knows and loves, and wait in the grace of the . . .Moment by moment.

“Surely your goodness and unfailing love will pursue me all the days of my life.” Psalm 23:6a

If God Is For Chase . . .

“Mom, do we still have to go to school even though it’s your birthday? Can’t we just stay home? . . . Uh, to be with you?”

I couldn’t help but smile at the logic of Aidan’s plea. The part about actually spending the day with his mother was definitely an afterthought to the part about getting a day off school.  “Get ready, buddy. The buses are coming soon.”

The birthday breakfast had been consumed, Aidan and Darcy were preparing for departure, and Bob had taken Chase to an early ophthalmologist follow up.  It was another busy day and a part of me thrived on it as I stood in the middle of the living room and took in the backdrop of holiday lights around another morning with the ones I love.

The ringing of my phone on the table by the Christmas tree cut into my thoughts. It was Bob.

“Hey, we’re done with the appointment.”

“Good! He’ll be on time to school. How did it go?”

“Not great. Chase needs surgery . . .”

How things and feelings can change in a minute.  

“What! Why?”

“The cataracts.” Bob’s voice was subdued. “They’ve grown. The doctor said his vision was about 20/40 in both eyes the last time he was in and now, he’s 20/60 in one and 20/100 in the other.  It’s time.”

“Now?”

“After the holidays . . . after the next MRI.”  There was was the subtle suggestion that if the cancer came back, failing eyesight will be the least of our worries.

And with those few words over the phone, the light and joy seemed to ebb from the room.  I didn’t feel the holidays or the birthdays or anything, really. Just the numbness that comes with sad thoughts and the quiet whisper that has occasionally plagued for three years now: We did this to him.  Oh, how I hate that whisper when it comes at me. And how I wish there were never any threat of guilt in the sadness.  

In the broad spectrum of surgery, this isn’t that big a deal.  In fact, it’s quite routine, so that isn’t the heartbreak.  The part that makes my throat grow tight is that it’s one more.  It’s one more and they’re pretty sure it came from the treatments that saved his life.  

Everything becomes so mixed up in moments like this and the brokenness screams out over the good.

That afternoon, I sat with Chase and we talked about his needing surgery to help his eyes.  As I spoke, he took my hands in his. “It’s okay, Mom, it’s okay. Hey, look at me. When was the last time you smiled? Can you smile for me? It’s going to be okay.” So I smiled through the tears because you have to smile when Chase asks. He’s an old soul, my bald boy. And one more surgery needs to be scheduled with no guarantee that it’ll be the last. And the voice of guilt is never fully squelched; rearing its’ ugly head in the moments of greatest vulnerability. But in this moment, I need to keep close to the things I do know: If God is for Chase, not even a hundred surgeries and complications can stand against him because he is fearfully and wonderfully made and despite the sadness, my soul knows this to be true. Even when I do not feel or see it, God promises that His plans for Chase are good and are lovingly orchestrated to give us hope.

These truths are the only lights that banish the sadness. 

Choosing joy in the pain . . . Moment by moment.

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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.

World Cancer Day

Impossible Question

“There has been no success in curing this cancer without radiation, but we know that there are long term neural and even physical effects from this course of treatment. What do you, as Chase’s parents, think?”

The impossible scenario with the impossible question.

What do we think?

In that moment, I think I wish I’d never walked into the room and never heard of cancer, and brain tumors, and chemo, and…

The reality is that Chase (barring the miracle we never cease to hope for) will begin radiation in a few short weeks. He is an excellent candidate for proton radiation (a “better” type) and our preliminary meetings and planning sessions with the doctors have been very encouraging.

It’s taken me a long time to blog about this scenario and its because I have found it almost impossible to write through being in a room and discussing the crushing reality of your child’s impending mental and physical changes …all the while knowing that these changes are still a lesser damage to him than his cancer.

Then, we leave the room and he’s still our Chase. In many ways, we said goodbye to who and what Chase was the minute we drove into the ambulance bay on that epic Tuesday in July. And at the end of my every thought and emotion on this, I have to come back to this promise…

“For you [God] formed Chase’s inward parts; you knitted him together in his mother’s womb. I praise you, for he is fearfully and wonderfully made. Wonderful are your works; and my soul knows it very well. Chase’s frame was not hidden from you, when he was being made in secret, intricately woven in the depths of the earth. Your eyes saw his unformed substance; and in your book were written, every one of them, the days that were formed for him, when as yet there were none of them.” Psalm 139:13-16 ( personalization added)

Our decision is big, but Jesus is bigger.

Moment by moment…