Zack was your typical teenage boy. He loved video games, hanging out with his friends playing in the woods, swimming, and he always looked forward to our yearly trip to Clark Hill to spend the week at the lake. Shortly after returning home from that trip in July of 2016, Zack began to have some pain in his jaw and numbness along the right side of his nose and upper lip. August 9th, 2016, we went to an oral surgeon to have his wisdom teeth taken out. He noticed a lump in the roof of Zack’s mouth and immediately sent us to Memorial to see an oncologist. That day, a CT was done and 2 days later, a biopsy. Cancer. A parent’s worst nightmare. The following week we met with many doctors, were given tons of information, and plans were made to start treatment. Zack was diagnosed with Embryonal Rhabdomyosarcoma. He had a large tumor in his face which ran from just above the roof of his mouth around blood vessels and nerves. They found another large spot behind his right eye. Inoperable. Our only option was intense chemo and radiation that would last at least 10 months. We began treatment at Memorial in late August and within a month the side effects hit him quickly and were very severe. By September the neuropathy in his hands and feet had become so severe he lost his ability to walk as well as his ability to play the video games he loved so much. He lost 30 pounds in 2 months and his entire body hurt. We spent days in and out of the ER for severe nosebleeds and chest pain. In October, on top of dealing with cancer, Zack contracted chicken pox putting him into isolation for a week due to his lack of immune system from the chemo. The chicken pox had barely started to heal when Zack developed a fungal lung infection which had to be treated with an IV infusion daily for over 12 weeks.
In November, the decision was made to start treatment in Jacksonville at Wolfson’s Children’s Hospital. We drove down weekly for treatments and began proton therapy at UF Health daily from November to February. After we finished the proton therapy, things were looking good. Zack smiled more. He was happy. At the end of February, a scan showed his brain was retaining fluid so the doctors decided to place a shunt into his brain to reduce the pressure. Surgery went well and most of his headaches eased up. In late April, the headaches returned. He had no balance, nausea, double vision, and neck pain. We returned to Jacksonville for the first of our last 3 chemo treatments. The doctors did another scan. This scan turned our world upside down. The cancer had spread to his brain and spine. We had 2 options. The first was continue treatment which may have given him up to 3 months to live. The second was to go home, do nothing, and wait. Zack was 15 and had been through more than most people go through in a lifetime. I sat with him and held his hand. I cried. He cried. I let him make the decision. He wanted to go home. That was May 2nd. My husband and I were engaged at the time and had planned on being married in November after Zack was finished with treatment. We moved the wedding up and the wonderful county I call home came together and planned my wedding and made it happen in 3 days so that my son could give me away. That was the last time Zack left his bed. He spent his last few weeks at home surrounded by family and friends. On June 7th, with everyone he loved surrounding him, he took his last breath. I held his hand and kissed him and felt my heart break into a million pieces.
Amber Edenfield, Zack’s mother
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