cancer – Page 16 – CHASE AWAY CANCER

12.12.14

“Mom? Are you awake?” The quiet voice came into the dark room from the silhouette of a fuzzy head in the hall light. “Mom? It’s me. I just came to tell you it’s my birthday. I’m five today and I’m going to open presents and…and…what am I going to do today?”

Some days, he might need to be reminded of what you do on a birthday as the scars present their challenges, but he didn’t need help remembering that he’s here and he’s five. And neither do I.

As I watch him open presents and I frost his cake, I find myself wanting to savor every second lest I never have graduations, weddings, and all those things that come with living long years.

Yet, as the fuzzy head tucked under my chin and the downy quilt early in the dark morning hours, I could hear his smile in the shadows and that colors the canvas of the day. The smile sounds spoke to my heart again: Chase chooses joy. Always joy.

“Mom?” His voice across the breakfast table; “why are you crying, Mom? I didn’t die of the cancer. I’m five!” And I wonder in my heart how such an old soul can be only five years young. Always joy.

“Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then five…” The doctor’s words always remind on this twelfth day of the last month. Five. The highest number listed in that year-by-year hope around the first conference table and diagnosis.

Today, my, precious, stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army Chase turns five with great joy.

We never thought we’d be here ever… and now we’re here.

God is good.

~MbM~

Today

Today, I walked into a huge medical facility bay and stared down a gigantic white truck structure. The MRI.

Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t…just couldn’t…do this right now.

Today, I stood in the bay as only one parent could go inside with Chase, and my heart ripped just a tiny bit at the sound of his screams and then it was silent but for the pounding of the machine. And I would learn later that though he screamed in the room, the minute the scan started, he became peaceful and still and stayed still for the whole test.

Today, as I held my breath and prayed for Chase in the sound of the machine, a man came up and introduced himself – the husband of a beloved proton radiation nurse who had cared for Chase nearly two years prior – what a small, beautiful world it is some days.

Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done. He did it!

Today, Chase descended out of the gigantic white structure, held his arms out to me and shouted “Mom! You came back to me! I did it and I was SO brave!!”

Today, we – Bob, Chase, the camera crew, a friend from the hospital, and me – we all waited in quiet anticipation to talk to the neurosurgeon.

Today, we all stood in the small exam room to hear that the growths, though changed and grown a little more, are considered stable.

Today, we talked of movies, and keeping up with small children and their energy as Chase went through the paces of touching his nose and myriad of other normal things that may not always come easily to him and Dr. Alden knows this and watches out for him.

Today, we heard that we get to wait to look again until January and enjoy our holidays and that we don’t need to think about biopsies or treatments right now.

Today, we heard that January is most certainly a necessity and that at least one of the growing places on the MRI is still a concern.

Today, we talked about nobody having all the answers and how frustrating it is when we ask and the doctors long to reassure with decades of concrete research and can’t.

Today, we were reminded that if we see any, absolutely any changes in Chase, we need to report them immediately.

Today, we chafed against the wait again and found our spirits wanting.

Today, we were given the day, and we’ll take it…

…moment by moment.

“We were made to run through fields of forever, singing songs to our Savior and King.
So let us remember this life we’re living is just the beginning of this glorious unfolding.
We will watch and see and we will be amazed if we just keep on believing the story is so far from over and hold on to every promise God has made to us…
We’ll see the glorious unfolding.”
Steven Curtis Chapman

Waiting for the neurosurgeon and mildly questioning Dad's ability to assemble a Transformer... — Waiting for the neurosurgeon and mildly questioning Dad’s ability to assemble a Transformer…

The Second Year

Tuesday, July 31, 2012…

Two Years… Two whole years since the early morning panic gave way to a living nightmare on the day Chase was diagnosed.

What struck me most as I looked through the pictures and memories is that life can feel complicated now, and yet, as I look back over the last year and see such crazy hard times, I realize that I’m apt to forget what it looked like in the shadow of whatever the here and now happens to hold. I can tend to see Chase’s deficits and struggles and not realize how healthy and robust he is now compared to the emaciated waif that was. The truth is that much has changed. The truth is also that there are many uncertainties ahead. The truth is that God’s goodness and faithfulness to us have never and will never change. And Chase is still living and breathing with us two whole years later.

We’ve spent many days listening to Rend Collective’s newest album. Our family’s favorite song is “My Lighthouse” and I truly can’t think of better words to sum the year…the two years…or, the lifetime:

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise,
You will carry me safe to shore
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storm

Even if we know nothing of what lies before us (and we don’t), we can look back and see the joy in so many ways.

Trusting He will lead us through the storm… moment by moment.

**Look back with us and find joy…**

Running for Gus…

One of the things that our family loves to do is promote the work of Chase’s hospital, Lurie Children’s Hospital of Chicago. The treatment that Chase had there saved his life, and the doctors, nurses and staff of the hospital are the top in the world.

Because of this, we try to help the hospital in any way that we can. This year, that includes dusting off my running shoes, training for several weeks using the aptly-named “Couch to 5K” app, and running in the Run for Gus, an annual fun run along the shore of Lake Michigan in Chicago.

The run was started by the family of Gus Evangelides, who lost his battle with brain cancer in 1995, just three months shy of his second birthday. Today, his family, and dozens of other families from Lurie, run to help raise money to fund brain cancer research at the hospital. Over the years that the Run for Gus has been going on, it’s raised millions of dollars to fund brain cancer research at Lurie.

This run has been a tremendous opportunity for our family to give back a little to Lurie Children’s. Brain cancer is one of the leading causes of cancer deaths among children, and fatal for almost half of the kids diagnosed, but there is painfully little research being funded to help stop it.

With some exciting new developments in cancer research on the horizon (see here and here), Lurie researchers could be just a short time away from making significant discoveries toward finding life-saving treatments for kids like Chase.

I hope that some of you might be able to join us in the run on July 24 (even to cheer us on), or help me raise money for the hospital by donating toward my run. You can do either by visiting my personal page at the Run for Gus website: http://foundation.luriechildrens.org/goto/ewoldt2014

I hope you’ll join me in supporting this worthy organization!

To Channel The Fight…Again

April 11, 2014

We sat in the room for almost two hours and dialogued on how the brain works. Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions. The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time. Marvelous and scary.

Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course. We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself. Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.

[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything. This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]

May 2, 2014

Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication. It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!

We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand. Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two. The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…

We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.

Moment by moment.

Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings. Psalm 61:1-4 (The Voice)