cancer – Page 16 – CHASE AWAY CANCER

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)

On The Unknown Road

The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road. Chase’s first day of therapies. A new building, new people, new things to be learned…the start of a new chapter. And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead? Always that question.

Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel. “Mommy? Where are we? This is not the road to my hospital.” For this is how Chase tells direction. There is the road that leads to his hospital and then there is every other road ever made. I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.

Silence followed for a brief second as he processed what he’d heard. Then; “But Mom, are we late?”

“No, Chase. We aren’t late. We are right on time.”

Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”

Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.” I received nothing but an angry growl and the reiteration that I was in error.

How many times would I need to speak truth to him before he heard?

Finally, this; “Chase, do you trust me? I know this road and I can see the clock. I know where we’re going and I know that we’re not late. You don’t know this road, but I do. I’ve driven on it before and I know where it goes. Chase, you’ll just have to trust me.”

The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock. You can; but I cannot.”

Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn. He tells me that even though I don’t know the road, He does. He knows where it goes and what’s along the way. He knows the timing of it and how it will take me to places that will be hard but will make me stronger. And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.

In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.

Moment by moment.

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

Open Hands

The shadow has descended again and I’ve found myself unable to write because of it. Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.

Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI. I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known. However, today, I was reminded to open my hands. To relinquish again the dread of the unknown to the One who knows.

So, tonight, I finally sit and write. I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long. I needed this reminder that Chase is not ours to keep. In fact, none of our precious littles are. They are our entrusted treasures and we are their stewards. We’ve gathered them around us in front of the two doors and we wait… with open hands.

Moment by moment.

The earth is the Lord’s, and everything in it, the world, and all who live in it. Psalm 24:1 [NIV]

Tag: cancer

The Second Year

Running for Gus…

To Channel The Fight…Again

On The Unknown Road

Open Hands

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