Moms Columns & Blogs

What Really Matters?

I’ve always known about childhood diseases and always taken some comfort in knowing that those kinds of things happen to other people- not my family, and not my friends.  I was thus left in shock last August when news started passing around the stay at home dad community that a fellow at home dad in Statesville, Matt, had a daughter diagnosed with AML. 

Leukemia.  In a beautiful and vibrant red headed three year old named Lindsay.

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Another friend described our feelings best- “Gut punch.  That's what it felt like when he told me.  That's what it felt like when I looked at my children after he told me. So unfair”.

Most of us spend our days worrying about other daily issues and it’s not until confronted with the reality of how these things can happen so unexpectedly that the veil is pulled down.  I don’t believe it’s healthy to live in fear, but I think it’s good to sometimes take a moment to recognize the struggles other families may face and use that to reflect on what is truly important in this life. 

On Sunday, August 17, Lindsay complained about being tired and her parents noticed that she looked a little yellow.  On Monday her dad took her to the doctor just to make sure everything was okay.  Here’s how Matt described it: “Hours or days or years later we were in Winston-Salem being told she had cancer, but it was unclear what kind. She had leukemia cells present in her bone marrow, but there was also another cancer cell hanging out there that was from somewhere else. The disease Neuroblastoma was mentioned. That was the most horrible day. I learned what neuroblastoma was and lost all hope. Wed Aug 20 morning, a cat-scan pretty much ruled out neuro blastoma. This was great news, but this also meant there was no diagnosis still. The full pathology report came back and showed those other cancer cells were actually leukemia cells also. So, diagnosis.....leukemia. AML. A bad kind of leukemia. Prognosis 50%. I was glad. Instead of almost no hope, Lindsay now has a chance.”

When I read these words on the family’s CaringBridge site (CaringBridge is a website that supports and connects loved ones during critical illness) I was stunned.  I had only recently met Matt in person, I knew him better and considered him a friend mainly through interactions on dad websites, but this was still way too close to home for comfort.  I cannot begin to understand the family’s feelings, but it doesn’t take a whole lot of empathy to imagine the sadness, anger, despair, and helplessness they must have had at this news.

For six months and five rounds of chemotherapy this family bravely opened up their lives through the CaringBridge website as they talked about Lindsay’s sometimes frightening response to the treatments (nausea, extreme headaches, abdominal pain, dry eyes, high blood pressure, benedryl hallucinations, very high fevers, depression, and Halloween, Thanksgiving, and Christmas in a hospital are not something any three year old should have to experience) and shared inspiring stories, insights, and yes, even the occasional funny aside:

“What else makes for a good day here? Hair is falling out. You think I'm being sarcastic? No. The only thing that is cooler than orange colored chemo-pee is hair falling out. "Mommy, my hair falling out!" "Mommy, I don't have to wash my hair, it's falling out!" "Mommy, I no want you to comb my hair, it falling out anyway!" and so forth. There has been much giggling and squeeling over this latest development. Who knows how excited she'll be on her next course of chemo when she's bald AND he pee is orange AT THE SAME TIME.”

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Fortunately this story ends on a high note.  I’m very happy to report that Lindsay is doing very well today and is in remission.  Lindsay’s mom tells it best:

We had just driven into the driveway after a trip to Winston Salem [after a round of follow up tests]. Lindsay started screaming happily. I looked at her and said, "Lindsay, what in the world is in your body? Wildness?"

She thought for a minute and said, "Not leukemia!"

Yea!!  Remission!  This is in large part to excellent medicine, Lindsay’s lively spirit, and the strength of two of the most amazing parents I have ever seen.  While following this family’s story I was always struck with a feeling of wanting to do something to help, but not having the faintest idea how to help them.  Now I’ve figured it out.

After all they’ve been through it is inspiring to me to see that Matt is participating in a St. Baldrick’s fundraising event next month.  St. Baldrick’s is the world’s largest volunteer-driven fundraising event for childhood cancer research.  Matt has agreed to have his head shaved in a show of solidarity with children with cancer while collecting donations from family and friends.  In a testament to the support this family has from their friends, Matt’s original goal of $1,000 was easily blown through, and he’s now getting close to the $3,000 mark.  In addition to family and friend donations Matt, Lindsay and little brother Michael have even tried running a neighborhood “Lemonade for Leukemia” stand. 

I understand that we’re all facing different economic hardships, but even $5 is a tremendous show of support for all children and families facing the horrors of childhood cancers.  I encourage you to check out the CaringBridge link the family was brave enough to share (and gave me permission to link to here), and visit Matt’s St. Baldrick’s page and make a donation in honor of this family, and all others who have had to face something like this.

CaringBridge 

St. Baldrick's Foundation

 

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