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EYAD'S JOURNEY

By Eyad's wife, Amanda

In September 2012, Eyad came downstairs with a small lump directly in the middle of his throat that he noticed while shaving. It didn’t cause him any pain, but had appeared overnight. We had been at a dusty music festival all weekend, but the lump’s location was so odd that, after speaking with his father (a cardiologist), we decided to see a doctor as soon as possible. Initially, the doctors suspected it was an infected salivary gland, so Eyad went on two rounds of antibiotics, but when the lump hadn’t changed, they commenced with further testing, and he received the daunting diagnosis of Chronic Lymphocytic Leukemia (CLL).

The diagnosis explained Eyad’s exhaustion and night sweats, and the general decrease in his usual energy and fervor over the last year. In the beginning, we were told that CLL, while rare for a 35 year old man (as usually it’s seen in children under 5 or men over 55), was highly treatable and slow moving, and that many people live with it and treat it more as a chronic illness.

However, further testing revealed that Eyad had a chromosomal mutation known as 17p deletion, which significantly increased the cancer’s aggression. By the end of October 2012, we were having discussions about a bone marrow transplant for him.

Over the next two months, the disease moved quickly. Shortly before Christmas, his lymph nodes were so swollen that he was put on a regimen of steroids to counteract the symptoms. Eyad began 3 rounds of chemotherapy in January 2013. Unpleasant as it was for him, it was a relatively mild dose and gave him some relief.

On April 2, 2013, we learned he was eligible for a clinical trial of a new drug that was extremely promising for CLL patients with 17p deletion. Eyad took to the new drug beautifully, and his symptoms responded immediately. Within 11 days he looked like himself again, and his lymph node swelling was gone. He was thrilled and grateful that this drug had seemed to give him and us our old life again, with no major side effects. Though his energy was still low and his memory was foggy sometimes, it was a lovely time: We played tennis, traveled, went to concerts and cherished the return to normalcy. We would press our doctor and trial administers to celebrate with us, to give us the green flag, but they tried to keep our expectations in check, and said that, while his symptoms were being managed, the disease was still there. We had been in the database for a bone marrow match for him, but as we used to joke, there was only one Eyad and the search for a donor match was fruitless.

At the end of October 2013, the lumps returned on his neck and collarbone. Eyad didn’t want to acknowledge them. We hoped they would just fluctuate and disappear, but they persisted, and began to grow again. His doctor informed us they had procured two umbilical cord matches for him, but would need Eyad to be closer to remission for a successful transplant. By the end of November, we had to make a decision – either begin a more rigorous bout of chemotherapy in an attempt to ready him for a transplant, or begin another clinical trial. After much discussion, Eyad wanted to go the route of the trial, despite the potential risks. We spent the next month frantically flying back and forth across the country for the trial, praying that this treatment would be the miracle we needed.

When we began the new treatment, Eyad had a Richter’s transformation, and the cancer had become more severe and lethal. At first, the new treatment medication reversed this transformation, but after 5 weeks, he began to experience severe gastrointestinal side effects. The new treatment had shredded his intestinal tract, and in January 2014 he was admitted into the hospital. Eyad was hospitalized for 11 weeks, in and out of the Intensive Care Unit with various infections, until the cancer finally overtook his body on April 2, 2014.

As a result of his experience, the drug was declared not a viable plan for other patients. I was with him for every minute of this terrible disease. As in his everyday life, he brought fearlessness and positivity throughout the entire journey. He didn’t want to discuss his illness with family or friends, he never wanted to burden anyone with worry, and he didn’t want anyone to ever look at him and feel sad. We educated ourselves, and tried to make the most informed decisions possible in all realms of his care. His kindness prevailed over his fear. He learned every nurse’s name in the hospital, and made sure to thank every one of them. He never gave up. Even at the end, when his body was ravaged, he wanted to win, and we truly believed that he would.

Eyad was an incredible man. He loved life wholeheartedly and without hesitation, and will always be deeply and dearly missed by his family and friends all over the world.

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