11 Years Old at Diagnosis.
Written by Katherine Macrone, Evan’s mother
Evan and his brother were playing when he noticed a lump in his upper groin. It continued to grow and we started testing and biopsy to discover it was a sarcoma. He was officially diagnosed in August of 2015 with a soft tissue sarcoma considered “Ewing-like,” but not classic Ewing sarcoma. We initially treated it as an Ewing type, with 17 rounds of chemo and six weeks of radiation.
Unfortunately, we found relapse and metastasis to Evan’s lungs in late December 2016, and he began a new cycle of treatments. We have also found a new tumor in his brain, so he has stopped chemo for now and is doing whole brain targeted radiation paired with Votrient to hopefully suppress further growth.
Once radiation is complete, we may have rescission of the large tumor that is on the outside of the back side of the brain (he started having vision issues that is how we found it) or we may go right back into chemo.
Evan is being treated at All Children’s Hospital in St. Petersburg, Florida by Dr. Damon Reed as lead oncologist. Evan is also considered a patient of Dr. Dubois at Dana Farber for a second opinion and any trials that may arise if what we are doing does not work.
Long-term survival prognosis is grim at this point. We know that, but Evan is otherwise healthy, his appetite is good and he is still growing and putting on weight. We are still hopeful for a treatment that may extend his life. I have seen two other options – one out of Siteman by Dr. Brian Van Tien and one out of Huntsman with Dr. Sunin Sharma – both possibilities being considered by Dr. Reed (who I am sure would prefer I get off of Google, but too bad).
Everyone’s child is special. Of course I think Evan is, too. He is a smart, kind, and has a good heart and soul. We are willing to do whatever treatment is needed to try and give him a bright future if possible. At age 13, this is so difficult for him. It is the time of life when he should be with his friends and growing into middle and high school and discovering himself and the world – not discovering what a tumor looks like in his brain or the statistical realities of his situation. And certainly not stuck at home with his mom.
Evan has completed all of 6th grade online through virtual school, and he went for one semester to 7th grade in public school – it may be worse for him now to be back online at virtual school as he knows what he is missing. He is the one kid that liked school and studying. He was in band with the clarinet and jazz band with piano, but I could not keep him up with a daily schedule now due to his treatments, which is very sad for him. But he still takes piano lessons, and he’s trying to keep up in Eagle scouts as he can, as that is very important to him.
He has a younger brother, Gavin, age 10 and an older brother Mike, who is 21. He is very close with both of them, and they rarely fight. Gavin will be devastated to lose Evan, as they are very close and still share bunk beds. I am working part time from home, as my company has been very flexible with me and my husband’s company has been overwhelmingly supportive and helpful. Both are like family to us, so I know we are blessed to have support and resources many families do not.
All children deserve a chance to fight and grow up. Cancer is so rare in children, and it receives such a small percentage of funding for research. With their growing bodies, the types and treatments children need is so different than adults. With research and funding, so much has been done already and so much more can continue to be done.
Update: March 2017
It is with a shattered heart that we announce that Evan Mario Macrone passed away peacefully on March 15, 2017 at 4:13 EST in Los Angeles, California surrounded by his family. Evan received the most extraordinary care available at the Children’s Hospital of Los Angeles after falling ill on his Make A Wish trip. Due to the nature of the illness we were unable to get him home and made the difficult but correct decision to allow him to pass peacefully and without pain surrounded by his family including Mike, and his best friend Matthew Spink, whose mom Bev Harper drove him down from the Half Moon Bay area where they live.
Evan had an amazing Sunday in Los Angeles at La Brea tar pits, LA County Museum, Santa Monica pier and Mullholland Drive. On his last night we had pizza and dessert in the room together and Evan was so happy his best friend was there with him. Throughout his long treatment Evan was brave and positive no matter what medications or procedures were required he stood strong and fought for life each day and looked forward to all the good things each day brought.
Please remember him as the kind, gentle, smart, funny, fun loving, beautiful soul he brought to this world. His time was cut too short but he knows how much he was loved and cherished. He was blessed to have his family (mom Katherine, dad Dominic, brother Mike, and brother Gavin and brother-like friend Matthew and mom) with him the entire time. His family, friends, and relatives coming to see him and spend time with him was the greatest blessing for him and each and every one of your visits and cards was appreciated so much by him. Thank you so much for being with him when he was feeling well and showering him with love.
Evan loved Cub and Boy Scouts so much, he earned his Arrow of Light and reached First Class rank working tirelessly toward Eagle even as his disease progressed. He loved camping under the stars especially at summer camp Woodruff. He loved school – reading, science, civics and math and didn’t hate PE as much as he said he did. Band was his great love at school, Evan played both clarinet and piano in the Symphonic and Jazz band when he was at Coleman. He sang in the all county chorus in 5th grade and loved jazz music (but jazz is for night as he says). He loved his brothers Gavin and Mike more than anything, Evan and Gavin shared a bunk bedroom all their lives and neither one wanted to move out to a bigger single room.
We have 3 items we will be funding with donations.
Boy Scout Troop 22 – for the Evan Macrone Camp Woodruff Memorial Scholarship Fund. This will be used to help send a deserving scout from the troop to this summer camp he loved so much he wrote a poem about it.
PTA at Roosevelt Elementary and/or the PTSA at Coleman Middle School – to support the Evan Mario Macrone reading library corner to be dedicated in his name later this year at each school. The corner will be stocked with his favorite books and funds will be used to purchase new books each year from the book fair because as he said “I wanted new books in the library from the book fair but they were too expensive”.
Evan wrote this poem in early December of 2016 in his 7th grade Language Arts class, before his relapse diagnosis. I wanted to share with everyone now in the future. It speaks to who Evan was more clearly than I can.
School Days: A poem
by Evan Macrone
Throughout Life I have learned
That you can’t stay clean on a camping trip
That you can’t enjoy delectable doughnuts from Dough
Or pizza hot out of the oven
That you can’t avoid bites by bugs
From pesky gnats, ticks, and no-see-ums
And you can’t get a thick sanctuary from the weather
Just a stuffy, flimsy tent.
But you also can’t hike mountain trails
Go canoeing, kayaking, small boat sailing,
Tubing, skiing, sightseeing, fishing,
Pioneering, swimming, snorkeling, and scuba diving
Cook meals for friends
Sleep under a night sky full of stars
If you are cooped up at home, hunched over,
Playing a video game
Or at school,
Taking an arbitrary test that will uniquely decide your future
Of being cooped up in an office till you croak.
So go and get out there
And maybe live a little
Cause god knows,
You could get cancer any day
Or get caught in a car accident
And how many days before that
Will you regret?
You can learn more about Evan here.
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