"This is a marathon, not a sprint, you have to remember to pace yourselves."
That's the advice that stuck with me from a 5 AM desperate phone call to a homeschool mom friend that happened to also be an oncology NP. I needed to understand what we were facing. I couldn't imagine what the future would look like.
I believe it's important to tell our stories. To document everything, even the hard parts. There is power in showing up. I remember trying to find others in our shoes so I could see what they did, how they handled things, what their future looked like, I needed a playbook. I was grateful to those who shared their stories and so I have always been open to sharing our experience. If nothing else it shows you the power in community.
Today marks 10 years of endless gratitude and perspective that began with a 3 AM call from my eldest daughter, then 20, from the emergency room. Six months prior, she had just moved into her first apartment, gotten engaged, and was eagerly anticipating her college graduation and a wedding in the fall. As a mother of a 20-year-old, you dread those middle-of-the-night calls, fearing recklessness or heartbreak in relationships. I went from being startled awake to bewildered when she told me the doctors suspected cancer. She had thought it was just an allergic reaction, the swelling in her neck and chest. She almost turned around on her way to the E.R. thinking she was overreacting and would be told to take a Benedryl but it turned out to be Hodgkin's Lymphoma.
At 3 AM, I drove alone for 20 minutes through freezing rain, contemplating how scared she must be and how mistaken the doctors were. She juggled work and full-time school, and I convinced myself she was simply overworked. Looking back, her "cold" had persisted. As a mom, the hindsight still stings. How did I miss this?
My youngest, then 7, spent the days leading up to her 8th birthday by her sister's side, confused but thankfully more bored than terrified, as she couldn't fully grasp the situation. We "celebrated" her 8th birthday in the hospital. I was thankful the official diagnosis came the day after her birthday, sparing her the news on that special day.
This week serves as a poignant reminder of life's preciousness as we celebrate my youngest, who is soon to turn 18, alongside my eldest daughter and her sweet young family.
Many heartfelt thanks to those dedicated individuals who work tirelessly in the medical field and hospitals. We were fortunate to have encountered some amazing nurses, doctors, technicians, and hospital staff who truly made all the difference. My grandson shares his middle name with his mother's oncologist.
For her 5 year remission anniversary I made her a book with all the updates that I posted online. I wanted her kids to see how much they were loved and fought for by their incredible parents. I wanted Carson to always remember how far she has come.
The book is filled to the brim with reminders of love and support from family and dear friends. I will always be grateful for every kindness shown to our family. And, of course, our family at Killabrew that supported us in countless ways.
Forever in your debt, Mike.
There are a lot of difficult memories but one particular day in 2016 is forever etched in my mind, I went to pick Carson up for a pet scan. She called me from her apartment asking me to stay in the car with Raigan. She needed more time. She was too sick. I called to tell the clinic we'd be late. When she finally came out I gasped. My 20 year old daughter was so white, she looked like a ghost, slowly making her way down the few steps. Walking but more like a crawl. I wondered how she would ever come back from this. Working in a restaurant at the time, I ran into so many young adults living so carefree. This reality of ours just hurt like hell.
10 years later
Now the mother of 2 beautiful children. Carson and Chris will be celebrating 10 years of marriage this fall. She fought hard for this life, they both did. Sometimes I foolishly ask her to slow down. She's a homeschool mom, co-op teacher, takes a circus class (insisting on sending me dizzying videos of her up in the air suspended in a hoop), weekly Honky Tonk two-step dancing like it's her job. She's now a fitness instructor at The YMCA. And this December, just days before her official 10 years remission anniversary we will celebrate her as she runs a marathon for St Jude's hospital. Over the years we have done various non-profit fundraising and volunteering but this time she has really set a big goal to raise $4000 for St Jude's.
I can't help but think of how this all started. Hearing my friend, Stacey say "This is a marathon, not a sprint, pace yourself" I could not have imagined then she would be where she is now. I was afraid to hope. Carson always knew better. She is committed to helping those that are in the middle of their own fight.
To help her meet her fundraising goal for St Jude’s we will be hosting some special photoshoots in the upcoming months so be on the lookout for that! Also, each month leading up to her 10 year remission we will be offering Shine Sessions, complimentary sessions for those affected by rare diseases, in an effort to shine a light on strength, awareness, and advocacy.
Link to Carson's story in her own words and fundraising page
https://fundraising.stjude.org/site/TR?px=9172196&fr_id=164588&pg=personal
Link to Shine Sessions complimentary for those affected by a rare disease
