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Through all the challenges: we had HOPE

My name is Ian Holzworth, I live on a small farm in Scappoose with my wonderful wife and great kids. I want to thank you all for coming out today and supporting this amazing cause.  We all share this common Dragon; whether you are living with sarcoma, have a special someone going through the battle, or have lost a loved one, days like these are critical to honor them by pushing forward the fight.

Before cancer we lived a fairly typical life.  We spent time as a family, watched the kids play sports and other activities. We gardened and spent time exploring our farm.  We enjoyed living life to the fullest.  In July 2020 we went on a 35-mile family backpacking trip and had the time of our life. Fast forward two months to September, shortly after my son's 9th birthday, he began to limp.  Believing it to be a mild playground injury I didn't think much of it, until a few weeks later when it didn't go away.  Luckily his pediatrician, Dr. Spencer, is a rock star and ordered an x-ray instead of writing his rather benign symptoms off as nothing. The trajectory of my life, my family's life, and Miles’s life changed in an instant.  Nothing can compare to the moment you hear your child has bone cancer.  I went from Father to Dragonslayer.  He went from playing with dragons to Dragon slaying.  We went into fight mode. From that moment, the lightning quick pace of tests, pokes and scans started.  He hated the pokes.  You quickly learn medical language you never even knew existed.  Before we could even take a deep breath, he was onto his treatment.  MAP is called, Osteosarcoma’s chemical cocktail.  Watching our newly minted 9-year-old have drip bags attached to him for days on end was a real eye opening experience. But he persevered.  He exchanged jokes with his oncologist, and continued to laugh at seemingly random things, all while the slow drip of chemo drugs flowed through his little body.  Just as we became accustomed to the not so comfortable “bench bed” and familiar with the hospital menu it was onto an 8-hour Limb Salvage Surgery, full knee replacement with 10 cm of upper tibia removed, including the growth plates.  Margins were tight, but clean-good, tumor necrosis 50% - not good.  Then back to chemo.  The process of driving to the hospital- our second home at this point- and lugging a wagon full of the comforts of home to the 4th floor became routine.  But he persevered.  He kept up on his schoolwork, did art projects, played video games and streamed YouTube to pass the time.  Zoom meetings replaced play time with friends and family.  Halloween, the day after Thanksgiving, the day after Christmas, and New Years all spent in a hospital room.  But he persevered.  The nurses and doctors are the most amazing people.  Staring down sometimes immeasurable odds, they come to work and make those kids smile while asking them life’s silly questions.  It didn’t matter what they said to him, it was from a place of true warmth and hope that the poisons they were giving would save my child's life.  They kept us all sane, and he persevered.  The day he rang the bell, all his doctors and nurses clapped and cheered the now 10-year-old.  Tears were shared, friendships bonded and bred for a dreadful reason.  We love those folks, but don’t ever want to see them again.  That’s the reality of coping with pediatric cancer.  But through all the challenges, there was hope.

Miles’s dragon is called Osteosarcoma, left Proximal Tibia, just touching the growth plate.  In the world of dragons, it’s a tough one, hardened by thousands of years of history, yet little is known about it, or at least about how to defeat it.  The first time we sat with the oncologists they told us not a lot is known about Osteo, they don’t understand the mechanisms of why someone gets it, they can’t predict how he will respond to the treatment.  They can’t predict how likely a recurrence is.  How, in this day, is “we don’t know” an acceptable answer?  There has been no real breakthrough in Osteosarcoma treatments for 40 years. How is it possible that modern medicine hasn’t been able to crack this code, even a little bit?  Cancer research devotes 4 cents for every dollar spent on pediatric cancer.  How is that acceptable?

During Pediatric Cancer Awareness month (September); HOPE comes in seeing my child laughing, making jokes, and living his best life. Though cancer has taken much from him and his childhood innocence, the strength I see in him and all the kids with cancer I've interacted with fills me with a special feeling.  Hope comes from knowing that we aren't the only family going through this, and that there are communities such as the Northwest Sarcoma Foundation who work to make all lives affected by sarcoma better. Hope comes from all you Dragon Slayers being here today in support of these foundations who push forward the groundbreaking research, treatments, clinical trials, and therapies being developed that continue to improve outcomes and improve quality of life.  Hope, is one day the oncologists will be able to look at other families and say “we do know”.  We know why, and we know how

to fight this dragon.

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