1. When was Mason diagnosed with cancer?
Mason was in his senior year of high school(class of 2017) when he had an ominous bone tumor growing in his right tibia. Unfortunately, no one realized what was happening & he did not get officially diagnosed until the month after graduation.
2. What type of cancer diagnosis was he given?
Mason was officially diagnosed with osteosarcoma(bone cancer) & had a very large, painful & aggressive tumor. We had never heard of this horrible disease & later learned it primarily affects growing adolescents & the teen population. It’s incredibly rare with only a 5 in 1 million chance of occurrence for 20 year & under US population.
3. How did his treatment progress?
Our son fought so bravely to survive & overcome his cancer. He endured grueling MAP chemotherapy(did not finish due to lack of chemotherapy response & progression) which his tumor showed poor necrosis for. It’s a horrific, outdated & unrefined protocol that only works for limited patients. If MAP fails, secondary treatments are salvage chemotherapies or clinical trials. There is no roadmap after the 30-40 year old MAP protocol which is extremely frightening for patients & families.
4. What did receiving that devastating news feel like for your family?
Our entire family of 7 was in the hospital room when doctors first told Mason & us they feared he had cancer in his leg. It felt like a nuclear bomb exploded & transported us into the unknown realm of pediatric cancer. Complete disbelief & utter devastation surrounded us.
Mere minutes after hearing this life changing & unwelcome news, our brave & unconditionally loving first born son told me he was glad it was a him & not us the parents or his little brothers or sisters. In that unforgettable moment, my son’s soul & character was fully revealed. His love, his loyalty & his determination. I will never, ever forget what he said to me as long as I live.
5. What were some of the things that helped you get through the initial months of diagnosis and treatment?
Our far away wolfpack & our local communities lifted our family up with love & care. Auctions, meal trains, emotional, financial & loving support surrounded our family & most of all towards Mason who as battling for his life! Mason & our family truly lived one day, one moment at a time through his journey. We were with him each inpatient stay. All of us, some of us. He never spent a hospital night alone. The bonds we have for each other only strengthened in this time. We were intentional with each other & those times together will not ever be lost or wasted. My son taught us to make the most of each & every day given. We struggle to carry on each day to live our best lives in honor of our fallen family member who no longer can.
6. What were some of your child’s favorite things to do, heroes, sources of comfort & joy?
Mason loved his family most of all. He endured the most stressful & painful surgeries & treatments with a positive & never give up attitude. He displayed a wisdom beyond his years & never once lashed out or showed bitterness for his unfair plight. Being home with us was his goal throughout his battle. The simple comfort of all of us together under one roof is a memory to cherish for a lifetime. That was everything to him & to us. To be one less forever is a daily agony.
He loved music, video games, his pets(Klee Kai dog Magic/sphynx cat Ezra), cars, eating good food, friends, family, experiencing mini getaways when breaks in treatment allowed.
Our son never got to ring the bell of completed treatment & was never NED(no evidence of disease). His surgeries & treatments were in efforts to slow or stall progression of his cancer. To our devastation, osteosarcoma was unrelenting & brutal.
7. How did you find out about Rett’s Roost?
My osteosarcoma friend added me to a Facebook bereavement group for parents who have lost a child to cancer. There I read in comments about Rett’s Roost & started researching support for our bereaved family. So very grateful to have learned about sweet Everett’s legacy & his amazing & kind family.
8. What is your favorite memory or most positive outcome of attending a Rent’s Roost retreat?
We came away from our Rett’s Roost Retreat with renewed hope, love & purpose. To have met in person other families & siblings experiencing this most unimaginable loss has been a light in the darkest times of our lives. Very blessed to have attended & met such inspiring people we now call friends.
9. What is the one thing you wish you could tell everyone about childhood cancer?
I wish I could tell each & every human being that childhood cancer can affect any baby, child, teen, or person at ANY time for ANY reason. There is no one immune from the possibility. Recognize life is full of unknowns & each day is a lucky gift to be appreciated & fully lived. Without fear, without recklessness! Fully & intentionally felt with open hearts. Our children have journeyed beyond us for now, but we will reunite. Love & the bonds we share do not die. It lives forever & the memories created will sustain us.