Colin was a happy, energetic, fun loving kid. He was diagnosed with autism at three years old. He was always determined, he wanted things his way and we usually had to conform. He attended the Palm Beach School for Autism in Lantana, FL. There he flourished. They taught him to expand his then limited vocabulary and learn how to adapt to different situations. He never let anything slow him down, until.....
New Year's Eve of 2015, we brought Colin to the doctor because of a cough he had for a few weeks that wouldn't go away. The doctor suggested we take him over for an x-ray to make sure he didn't have pneumonia. Once there, a look at the scan revealed something none of us ever expected...
A large mass was crushing his entire left lung and had displaced his heart as well as his esophagus. From there we were sent right to the local hospital. They took more scans and their immediate response was "we've never seen anything like this before in a child"! (Clearly not something you want to hear from your doctor.) We were immediately advised to take him to Joe DiMaggio Children's hospital in Ft. Lauderdale, FL because they had a surgeon on staff and they thought Colin may need emergency surgery.
After numerous tests, scans and biopsies, they couldn't figure out what type of cancer he had.
They didn't want to put off treatment and they wanted to try and shrink the mass right away, so they settled on calling it an “undifferentiated” Sarcoma. We then transferred him to a hospital closer to home where he began chemotherapy treatments. After a few unsuccessful rounds of chemo, the decision was made to remove the over 23cm tumor via surgery, which also included the removal of his entire left lung. The surgery appeared to be a great success and with the knowledge that they had achieved negative margins, Colin was sent home after a few days and told he would need follow up scans in 3 months.
He returned to school and began to live just as he did before, but after a few short weeks, it became clear something was wrong again…
On the morning of May 7th, 2016 Colin was rushed back to the local hospital in total respiratory failure. After a few days filled with tests and scans, it was discovered that a new tumor had started growing and was now compromising both his airway and lung, as well as pushing on his heart. He was airlifted back to Miami on a ventilator and began both chemotherapy and radiation, as surgery was no longer an option. Eventually, he was diagnosed with a very rare cancer known as Inflammatory Myofibroblastic Tumor and transported via air ambulance to Boston Children’s Hospital and the Dana Farber Cancer Institute. There he began treatment via a targeted chemotherapy agent, which led to him being taken off ventilation and eventually back home to Florida with the tumor responding to treatment.
Unfortunately, this was not to last. The tumors began growing again in late 2016 and in February of 2017, he was hospitalized again, this time with kidney issues.
Over 15 months he was at 6 different hospitals, had 10 different trips to the ICU, underwent major Cardiothoracic surgery at Jackson Memorial Hospital in Miami that included the entire removal of his left lung, endured multiple rounds of chemo, had 15 rounds of high dose radiation, was reduced to eating through a feeding tube for over 7 months, was put on a ventilator 6 different times, spent over 160 days in the hospital, was in a wheelchair for the last 7 months, all the while smiling, laughing, hugging and giving us the “thumbs up”.
He lost his fifteen-month battle from this horrible disease on March 17, 2017 at Boston Children’s Hospital. In honor of his amazing strength, we have started a foundation in his name:
B COLIN STRONG.
Throughout his battle, Colin never complained of pain, he continued with strength and endless hope every day. He taught us to always smile, be courteous, overcome your fears and show unconditional love. He always said “please” and “thank you” and was adored and admired by all who came in touch with him. Our mission is to continue Colin's legacy of strength, love and courage and to help support other families struggling with both cancer and autism, just as Colin and our entire family had for 14 months and specifically with autism for over 14 years. The funds we raise go toward funding children’s Autism development programs, as well as family assistance programs for children fighting cancer throughout South Florida.