I cannot resent it being given to us either. Life is a struggle, but these things have been destined for our good – to give us a future and a hope. And it is that hope to which I cling as we’ve moved through tears and heartache in a broken world – often far too alone this year, especially. It is the hope that there is goodness and joy to be had despite it all because of the love of a good, good Father.
We are overwhelmed, yet God is faithful.
We are tired, yet God never sleeps.
We grieve, yet God gives hope in the pain.
And isn’t this why we mark this Christmas-time, life-long celebration? The moment that tiny babe drew breath in a barn cave with the animals all those thousands of years ago, the war was won. Hope will always win because God’s love is greater still.
Choosing hope for us all, with great thankfulness – now, and in the new year to come.
Moment by moment.
Love,
The Ewoldt Family
Photo credit: Margaret Henry Photography, Catigny Park, December 2020
Today, Saturday, December 12th at 3:20PM, our darling boy turns eleven years old. And what a year this one has been, right?
We are still in awe. This boy is in double digits in his singular, astounding and miraculous life. What a blessing!
And even as we continue to wait for next scans and answers and medical stability of some kind – even as we turn the page on one of the most extraordinary years of his life, we are so thankful and blessed. And there’s something we’d like to tell you about in regards to all these blessings, because I think you might be able to come alongside us for this part now…
Over these last years, in the middle of this second diagnosis with its relapse, growth, and treatment, and endless waiting, there have been many individuals and organizations who have walked beside us in so many unique ways, but on this, Chase’s eleventh birthday, we’d like to share a very special ‘bearer of burdens’ with you: the Anthony Rizzo Family Foundation.
Many of you will know the name ‘Anthony Rizzo’ from his place as the Chicago Cubs first baseman, but did you also know that Anthony was once in a hospital, being treated for cancer when he wasn’t that much older than Chase is now?
Anthony believes that an individual does not battle cancer alone, but that the whole family battles it together. The Mission of the Anthony Rizzo Family Foundation is to raise money for cancer research and to provide support to children and their families battling the disease. The Foundation is run entirely by Anthony’s family, his close friends and his management team with Anthony providing oversight and leadership. All of us at the Anthony Rizzo Family Foundation believe that every family deserves a fighting chance.
Our family has not only been recipients of the foundation’s generosity, but have watched so many others’ be assisted as well – from helping fund medical bills to shipping PPE during quarantine to funding grants endowing child life specialists on the oncology floors (ensuring every child has the resources they need) to simply walking among the families and saying “What do you need today? How can we help you right now?” Again and again, we have had the honor of watching this foundation step into the gap with so many families and so it’s with great joy that I encourage you – for Chase‘s sake – to be a part of this work.
In honor of Chase’s 11th birthday, would you consider giving to the Rizzo team? $11 for 11 years – or more! Every little bit helps.
Chase’s eleven years on this earth have been marked by the most incredible love and I’m so excited that – together – we can shower that same love on other families through the Anthony Rizzo Family Foundation!
This is the least favorite part for my own heart, and yet my most favorite part for the sake of Chase’s heart and body too. Because for every month that goes by watching, it is one less month that Chase gets put into procedures, surgeries, and more tests.
So we will wait and watch the mole grow on his back for now – the other moles and freckles grow on other parts of his oh so fair skin for now.
No skin cancer today.
We will take it today.
And as I sat in the rain on the highway under the gray sky with Chase near asleep in the back seat, I called Bob and told him the news and he responded: “Does this mean we’re officially back to only one active cancer now?”
And for now, dear ones, I think it does mean exactly that. Chase’s thyroid cancer was sitting in a couple lymph nodes around the thyroid site in March, so he will most likely have a full body scan yet this calendar year, and we do not yet know why he still has seizures, why he is tired so much, why he bruises like this, or why he is having trouble gaining weight.
We may never know some of these things, but we will continue…
I remember the August 10th day specifically because there was a bad storm. It was hot, humid, and dark the afternoon a summer thunderstorm hiding a tornado ripped through our suburban town, taking trees and power and the downtown church steeple along with it.
Our family packed bags in the dark and went to stay somewhere with electricity and internet, but I remember the date because it was the first time I saw Chase’s bruises.
That night, at the grandparents’ house, as I bent over Chase to inject the growth hormone into his upper thigh, I realized that there were small purple and black marks along his white skin – almost as if the nightly injections were causing injury. If they were on his shins, I might have looked to his brothers, because young boys are always running into and over things, but these were up too high, too far away from regular contact areas.
So, the next day, I spent long moments on the phone with multiple hospital teams. And somehow, in the next few weeks, they changed the injection medication and checked all the other medications from every other discipline he sees. But nothing matched, and Chase began to lose weight, complaining of stomach pain all the time.
All of the gastro tests came back fine, and then the preliminary bloodwork for blood cancers came back fine. And we talked about other, more invasive options for testing, but it seemed like there was too little to go on. So we waited.
For two months, we waited.
It turns out that sometimes time proves to be its own answer. Because the longer the bruising lasted, the more worrisome it became, simply for continuing. Not the worrisome of a terrifying specter, but more that of a niggling doubt – the quiet “what if” whisper that keeps you up at night.
So, after two months, the teams finally scheduled Chase for a bone marrow biopsy. It was time to conclusively rule out things like blood cancer, marrow cancer, and even the possibility that the thyroid cancer still tucked into lymph nodes around his throat had found his bones too.
And on Friday afternoon, Chase’s preliminary results were released…
He is clear of these scary cancer pieces and we are so thankful.
After two months of no answers, we now know what it isn’t – and with a child like Chase, that is abigvictory. So, for now, we are watching Chase’s diet and skin very carefully. Lab results show his nutrients are near perfect, despite his weight loss, and we continue to work with his teams to take care of him and make the best of whatever this is – secure, for the moment, in what it is not.
So, after two months, it would seem we can finally take a deep breath, finally just settle down to another school year, and time with the family, and just being…
However, on the day of Chase’s biopsy, the doctor performing the procedure came to speak to me while he was in recovery – two days before we found out his results. “Have you had that mole along his spine checked?” Her face was quite serious. “I don’t want to alarm you, but that is right along where he was radiated and I think you need to get it checked as soon as possible.”
Oh, dear ones, so, it would seem that we put one round of cancer concerns to rest only to begin another on Monday afternoon when he sees his oncology team with a dermatologist. And yes, skin cancer does not hold the deep fear of bone or blood cancer, but when I told Chase, he scrunched up his nose with a little growl and said; “toomanycancers”. And he is not wrong.
When the doctor left the procedure room after telling me to check his skin, I actually laughed, not because it was funny, but because coming out of the operating room on an exploration for leukemia and worrying instead about skin cancer felt utterly ludicrous to me!
There simply aren’t words in this language to express the sheer insanity of this cancerous journey we seem to continuously be on. It is horrific, which is why we acknowledge research efforts, awareness months, and so many stories around us.
But Chase’s journey is also precious because he lives and the story has never been so clearly and apparently out of our hands. He could have been totally healed a hundred times now, and he could have been gone at least a dozen times I can think of in the last decade, and yet, Chase is still here and the journey continues. And I don’t know the reason, but I believe there is at least one, if not a hundred…or ten thousand.
So, yes, it is “too many cancers”, but nothing is “too many” for our loving Father.
Purpose in the journey…hope along the way…choosing thankfulness with defiance… moment by moment.
“You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.”
When they took him back to the operating room, I kissed his fuzzy head, skin-to-skin muted by the paper of the masks we all wore, and I whispered “I love you most.” But Chase is Chase, so as they slid his bed through the doors and away from me, he called back “I love you more than that!”
Thank you for all the love and prayers this week, dear ones. Wednesday was a long day, but a peaceful one too.
There is a chance that some results of this bone marrow biopsy might come back within a few days, but most will probably take a week or more.
And until then, beyond then, for always, we wait with hope…
