Tag: change

Past, Present, and Future

Dearest Dr. Lulla,

Thank you.

Thank you for giving us hope where there was none.

Thank you for reacting to our shattering news as if it was your own – even though you do it over and over again with each family.

Thank you for being a clinical advocate – taking on each and every problem with a precision and logic that cut through the fear.

[credit: Jan Terry]

Thank you for knowing when to scrap the clinical and look us in the eyes as suffering human beings, not just the nearest and dearest to a medical chart waiting to be updated.

Thank you for backing us up and encouraging us to trust our gut instincts.

Thank you for letting us cry.

Thank you for giving us permission to laugh.

Thank you for being an encourager – always pushing us to see the very best and beautiful in the hospital staff around us.

Thank you for learning our names, our lives, and remembering them.

Thank you for learning every nickname we ever gave Chase and what he was like as a person – all on the outside chance that he might not scream at you when you came into the room.

Thank you for learning the names of Chase’s siblings and pieces of their stories – a heart-wrenching acknowledgement that Chase was not in a void and there was a different life outside the cancer.

Thank you for fighting for our future.

Thank you for investing in our present.

Thank you for seeing Chase as a life to be lived.

Thank you for being our advocate.

Thank you for all the things you did that we’ll never fully know or understand.

You somehow make the unthinkable more bearable, and for that, you will always and forever be considered a trusted friend and a precious member of our family.

Love always,

The Ewoldt Family

Today, Wednesday, January 25, 2017 marked the end of an era. Chase has been off chemotherapy and the scans have overall been stable for so very long that it is time: Chase’s file is being transferred from the regular neuro-oncology clinic to a place called the STAR clinic. The “S” in “STAR” stands for “survivor”. Chase is now officially considered a survivor of his cancer. I can hardly breathe for writing those words! And while he will still see many of the same teams of doctors (and there will be many teams – as Chase still fights a great many things), there will be one very significant change: today was Chase’s last official appointment with Dr. Rishi Lulla, the attending neuro-oncologist who has overseen his case from the first moments of July 31, 2012. We consider it the highest honor to have had Dr. Lulla oversee Chase’s treatment and care and we hope to see him in the halls of the hospital some day soon! 

[credit: Dr. William Hartsell]

The Story of Three Guys

Once upon a summer time in a city of two towers, three guys named Tim, John, and Enda did well for themselves and decided to give back.  But how?

They decided to shave their heads for donations to fund research for kids with cancer and the next annual St. Patrick’s Day party was the perfect time to do it.

March 17, 2000.  17 heads.  $17,000.  This was the plan and the goal.

They proceeded and instead of reaching their goal, they’d exceed it significantly!  Instead of the 17 and 17,000, they’d end up with 19 shaved heads and $104,000.

The party was so successful that they did it again the following year and raised $140,000.

And then the Fall came and the two towers fell in their city and lives and friends were lost in that city, yet the men moved on unshaken in their goal for children.

The next year had 37 events…not 37 heads, but events, and they reached their first $1 million.  

Many who shaved were the first responders… the men and women who ran to rescue at the two towers, who run to rescue every day, the men and women who answer the panicked parent calls for the bald cancer children, the men and women who faithfully serve the country… They shaved their heads and stood for kids with cancer on military bases.  This is heart and soul worked out with a razor.  This takes the hard and sad markings of a disease and turns it from a sign of “other” to one of greatest courage and cause.

These men with this March idea would go on to become an independent foundation and begin funding Fellows – researchers who worked to better treatments and change the future for kids with disease.  More fellows and researchers every year.  More ideas. 

The shaving events continued to grow into the hundreds and the dollars into the tens of millions and the most respected in the nation gathered for a research summit to discuss priorities and goals and quality of life for the littles and in 2012, as the ambulance rushed us in and we heard “There’s a large mass…” and our lives changed forever, this now national foundation, named for the marriage of the worlds “bald” and “St. Patrick’s”, this huge thing born of an idea to give back, it reached $100 million.  

And then it gave back as it did every year…this time, the fellows included a young doctor in Chicago who was about to meet Chase and fight for his life.  And it became personal.

Chase with Dr. Lulla while in treatment
Chase with Dr. Lulla while in treatment

Each year, the foundation chooses 5 children to be their face and story.  Four living and one forever in our hearts – to represent the current truth of the fight that 1 in 5 will not survive.  Some of them shave, and some of them can’t…because they have no hair to share.  But they all step forward, look the cameras and the papers and the people right in the eyes and say “This is me.  This is who I am because of research and the need of it.”  Sometimes, the picture painted isn’t pretty, but the children are always beautiful in their struggle and their open hearts.

And so, when your social media blows up in March with donation requests, invitations, and people in bars and on stages, covered in green aprons and crying and shaving and holding loved one’s pictures and hands… This is why.  Because almost two decades ago, three guys had an idea. 

Around the world, a child is diagnosed with cancer every three minutes.  This is our March, our year, and on some level… our life.  We invite you to come with us.

I want to help, but I don’t want to shave my head.

I want to shave my head.

I want to learn more about St. Baldrick’s advocacy in Washington.

Why do they focus on pediatric cancer?

[All St. Baldrick’s history courtesy of the St. Baldrick’s website.  To read more, click here.]

IMG_7148

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…

Get all the latest news and info sent to your inbox.