A Pearl

Tatum and Maisie Moving Mountains

The challenges of being a pediatric cancer family are innumerable. Every time you think you’ve found the worst thing, something else rears its ugly head. These past few weeks we’ve witnessed a hefty serving of that humanity, led by two young girls, Tatum Pillor and Maisie Gerken, who wanted to make a difference, and boy did they.

   – Amy Berg, Rhabdomyosarcoma Survivors mom &

Childhood Cancer Advocate

Guest Blog by: Amy Berg

    The challenges of being a pediatric cancer family are innumerable.

    Every time you think you’ve found the worst thing, something else rears its ugly head. All too often, you feel smothered under the weight of all that stands before you. Complex medical details, crushing debt from insurance and bills, having to hold your child down for countless needles and procedures, all while monitoring the horrific side effects of the very chemotherapy that is supposed to be helping your child.. The change happens overnight, when your world separates into “the before times” (i.e., before diagnosis), and “the after times”. There is no acclimation period. Through it all you feel tired, worried, and isolated, but all of that cannot overcome the one significant upside to this journey. We are only 2.5 months into our year-long journey and already it has been speckled with some of the most beautiful things life can offer

   We have experienced more love, support, generosity, and compassion than we ever knew possible. The prayers, introductions, sweet gifts for Ellie, help with researching, acts of kindness, home-cooked meals, fundraising, blood donations, moral support, constant check-ins… throughout everything, you’ve radiated light through our broken spots, and helped us stand when we were feeling weak. Even though I wish the circumstances were not so, I cannot help but feel grateful for having had the opportunity to witness such incredible humanity. 

    These past few weeks we’ve witnessed a hefty serving of that humanity, led by two young girls, Tatum Pillor and Maisie Gerken, who wanted to make a difference, and boy did they. . Two weeks ago they presented their plan to run a lemonade stand (#lemonaid4ellie), also selling snacks and bracelets to raise money for Ellie. They—along with their siblings, friends, parents, and their parents’ friends—worked so hard to prepare for the big day and get the word out. I was sadly unable to attend yesterday’s event, but the tales I heard, and the footage I saw, was breathtaking. The vast crowds, the traffic jams,, the sheer quantity of hands, big and little, on deck to help, supportive and loving wishes for Ellie’s survival, and complete strangers extending their generosity- all of that, having started from those two young girls.

    Tatum and Maisie’s goal was to raise $3,000. They absolutely BLEW their goal out of the water by raising five times that much! Saying that they crushed it vastly undersells what they’ve accomplished. The hard work of the community they brought together on that day means that we can now pay completely in cash for Ellie’s stem cell harvesting procedure, which our insurance views as unnecessary. With that burden now entirely off the table thanks to Tatum and Maisie’s hard work, we have more financial freedom to plan for Ellie’s comfort during our two-month stay in Manhattan, instead of having to focus exclusively on the bare minimum for her survival. I wish that Ellie, her dad and I could have been there to witness the magic of the day, but we still felt the love from afar. 

    I mentioned the broken parts earlier. Ellie (with my husband’s help) bought me and my mom matching pearl bracelets this week. I was reminded that a pearl is actually the result of a mistake – a tiny speck of sand sneaks into an oyster shell, and acts as an irritant. As a defense mechanism, the mollusk secretes a bioluminescent fluid that coats the speck, over, and over, and over. To the oyster, this speck is nothing but a problem to be solved- some broken element that needs to be fixed, and it is doing the best it can to stay resilient. But, if not for this irritating grain of sand, the oyster would never create a beautiful pearl.

Our family’s childhood cancer experience is an apropos example of how broken things can emerge changed, yet more beautiful and resilient.

Our hearts can remain both broken and mended, in tandem, to keep us level. 

    Sometimes, you don’t know where the next bout of hope is going to come from, and sometimes it comes from places that – like an oyster bearing a pearl, or a determined duo of eight-year-olds – will (pleasantly) surprise you. No matter how rough this journey gets, we will always choose to see the beauty in the world. To all of the donors and contributors to yesterday’s LemonAid4Ellie event, and ESPECIALLY to Maisie and Tatum, please know that you have made a huge difference in our brave little girl’s life, and know also that we will never stop fighting! We are all in this together – you’re stuck with us 😎. Thank you.

   Last but not least, thank you to the Pillors, the Hunts, the Gerkens, G M Hunt Builders and Remodelers, the Carefree Coffee Roastery, and everyone else who contributed in-kind, showed up to help, and blasted the event on social media to create awareness. You all moved mountains yesterday! 

💙 – Ellie’s Mom 

How is Ellie doing today?

Ellie is in another year of survivorship, going to her follow-up appointments and survellaince scans to moniter her regularly! But she’s growing and living the life that her family is grateful for her to have. Knowing the serious and devestating diagnosis they don’t take any day for granted.

 

WE LOVE THESE KIND OF REPORTS! 

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