Cancer – Page 21 – CHASE AWAY CANCER

On Being An Ambassador

Summing up a whole year is often like visiting a medical office for me: a dreaded, but sometimes necessary exercise. I hate the action of listing it all out because it can be so trite to gloss over and wrap up, but as soon as I start, all the painful, awful, funny, perfect, and wondrous things that have passed start washing over me and I never regret the exercise. One of the most amazing aspects of this last year has been Chase’s role as a national ambassador for the St. Baldrick’s Foundation, and this morning, in the last of the 8,760 hours of ambassadorship, we sat down early to reminisce over some of the opportunities: shaving his brother’s head, going into schools to meet with children and talk about cancer and chemo, getting to connect with so many people on something that has shaped us on such a significant level – to name just a few.

Memory is hard for Chase and he slumped down in the chair as I asked him what his favorite part of the ambassador year has been. “Can’t I just say that I love Dr. Lulla? He’s my favorite. Can I just say that?”

Chase with Dr. Rishi Lulla, a St. Baldrick's researcher and Chase's attending neuro-oncologist at Ann and Robert H. Lurie Children's Hospital of Chicago. — Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago. Photo credit: Jan Terry

“What about the time you made Aidan bald?” I laughed.

He slumped further. “Please don’t laugh about being bald. It hurts me.”

Reaching over, I picked him up and hugging him close, I explained that my laughter stemmed from his and Aidan’s precious hearts for each other, not their lack of hair. Never the lack of hair.

And then he settled into it. “I did like shaving Aidy’s head. That was fun. And I really liked doing the Pin Guard tournament with Miss Jen at school with the firemen. And I think I liked whenever they gave me a microphone to talk to kids too. Those were my favorites.” He stopped and thought for one minute more, and than as is his habit, he interrupted his own musings. “Also, I think that . . . Hey, Mom! I have a great idea! I want to make cards for kids who have cancer and chemo like me! The next time we go to my hospital, can I take cards to my friends like my Mia and my Lucas?”

And with that, the time for memories were over. But isn’t this the point of sharing our stories? Of being an ambassador? Reflection that leads to action. For Chase, in this moment, it was wanting to encourage other kids. And over this past year, as more and more have looked to encourage and action has been taken – from grade schoolers growing out their hair all the way to a US Congressman signing the STAR Act – thousands upon thousands of dollars have gone to change the outcomes. This is amazing!

Talking about St. Baldrick's at Madison Elementary — Talking about St. Baldrick’s at Madison Elementary

As 2015 comes to a close, we acknowledge the hard things that have brought us to this point, revel in the joy that keeps us going, are deeply thankful for all the ones around us, and look expectantly to 2016 for all that it will hold.

A huge thank you to the St. Baldrick’s Foundation for letting us help carry your message this year.

Speaking The Struggle

Good morning! I’m over on the St. Baldrick’s Foundation blog this morning, talking about Chase’s amazing meeting with Rep. Peter Roskam earlier this fall. Join me to read what the US Congress heard about Chase!

Here, I’ll get you started… click on the link below for the full post:

“Over the years, there have been long days and trying times that I want to get up and shout, “This is so hard!” Times when I want to pull out the soapbox for what affects my family, and talk about the lack of funding for childhood cancer research.

Most days, I don’t shout our struggle because we all have something to shout. We all struggle.

Which makes it all the more precious when someone else steps in to shout it for you.

One September morning, I sat in a school gym. The whole family sat in metal folding chairs forming a small arc against the front wall, while hundreds of children and teachers sat on the floor facing us.

The principal stood to welcome everyone in her beautiful red shoes. As she spoke, there was a murmur of activity in the hall outside the gym, and the crowd gathered at the doorway parted for a single, quiet man…”

http://www.stbaldricks.org/blog/post/illinois-representative-peter-roskam-recognizes-ambassador-chase

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.

Every Promise Is Enough

For three years now, we take a moment to reflect. This Wednesday in 2012, Chase was deep into radiation on top of his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving. And then Dr. Goldman entered the room (as only he can enter a room) and told us to go. And we went. Three years later, we are thankful for so many things and our darling Chase is still with us to celebrate.

“My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev’ry promise is enough
For ev’ry step I take,
Sustaining me with arms of love
And crowning me with grace.” [Getty, Townend]

Happy Thanksgiving to you and yours!

~The Ewoldt Family

5:31

Five hours and thirty-one minutes.

For five hours and thirty-one minutes he pounded the pavement, putting his feet to his purpose. And for all those hours and all those miles, past crowds, houses, and fields in the November sun, he ran holding a sign in the air – “Chase Away Cancer”.

And he told me tonight, though he kept his headphones in his ears, he never needed them as he talked to the people around him. People who came alongside him to talk about his sign because they were survivors, neighbors, family, friends – each one a person whose life had been touched by cancer. They saw him identifying with it in his sign and they identified with him as they all ran together.

And this morning, as he geared up and prepared to walk out the door, Chase and his fuzzy head stumbled down the stairs before the sun was up, urging him to run fast, not slow down, and “Run like me, Dad”. And then Chase covered his fuzzy head against the frost and cold and stepped out along the route to cheer the runners on, holding a sign alongside his crazy, cheering grandfather, proclaiming that “sweat is liquid awesome”.

Five hours and thirty-one minutes later, Bob crossed the finish line for Chase and fighters and parents and friends everywhere. And he wasn’t alone. You put your hearts into this race with him, and today, nearly $5,000 dollars went to St. Baldrick’s in their tireless efforts to chase cancer far, far, away.

THANK YOU.