DSRCT Diagnosed 7/95 at age 16 - Passed Away 9/97
From Adam's web page :
The lives of Adam and his family were changed by a single-car accident on July 28, 1995. Adam hit a telephone pole suffering a collapsed lung and deep lacerations on his back. Initially, the treating physicians suspected that he also ruptured his spleen, but an operation revealed that a football sized tumor in his lower abdomen had broken off and was responsible for his internal bleeding. The surgeons left several tumors (two golf ball sized and one baseball sized) unresected because they didn't know the type of cancer they were dealing with.
Adam's family came to view the car accident as a fortuitous incident, a blessing from God, that allowed them to get Adam into treatment long before the onset of symptoms.
Soon, Adam was diagnosed with desmoplastic small round cell tumor. He began his first line of treatment, Brian Kushner's P6 protocol. (See Kushner et al 1996.), in August under the direction of a local pediatric oncologist, Dr. David Ungar, MD, at the Penn State University Children's Hospital (Hershey Medical Center) in Hershey, Pennsylvania. The treatment required 5 day inpatient hospital stays every 3-4 weeks. From the very beginning Adam was fully involved with his treatment plan. His chemotherapy experience was relatively good. Nausea was fairly well controlled with granisetron, decadron, phenergan. He only had two neutropenia fever/infection episodes requiring hospitalization. The first was related to an open wound at the probe insertion site below his clavicle. He was treated with a broad spectrum of IV antibiotics - basically vancomycin, ceftizidimine, and gentamicin. He was able to leave the hospital and carry a CD case over his shoulder containing his IV antibiotics - thus, able to return to return to school. The second came three weeks later relating to a small abscess (pimple) on his eyebrow. (Needless to say - you don't pick or touch!) They punch biopsied it with negative cultures, he was again treated for cellulitis with IV antibiotics. He completed his initial rounds of chemotherapy in January of 1996. By that time we were all reading Bernie Siegel's Love, Medicine and Miracles and Hirshberg and Barasch's Remarkable Recovery. Many prayers were being voiced for Adam all over and he felt uplifted by that. He was a quietly spiritual person with a strong faith and will to survive. He was very upbeat, always looking on the bright side and having a very positive attitude. His courage inspired and helped those around him to be strong. After the chemo treatment, his scans showed tumor shrinkage but we knew surgery was necessary to remove them. At the end of January Adam went for a consultation with Dr. Kushner and a bone marrow harvest was completed.
Kushner's plan called for more surgery followed immediately by a bone marrow transplant. The physicians at Sloan-Kettering Memorial Hospital were also calling for a colostomy, a procedure that young Adam found especially unappealing. The family decided to step back and examine other options.
Returning to Pennsylvania, they first met with surgeons from their local hospital, the Hershey Medical Center. But these doctors left them with a bad feeling and the family continued their search for a better treatment plan.
Then, their local physician found Dr. Paul Sugarbaker on the Internet and Adam went to the Washington Hospital Center in Washington, D.C. for a consultation with Sugarbaker. The family, and especially Adam, came away very impressed with Sugarbaker's confidence and procedures. His plan called for an aggressive resection and intraperitoneal chemotherapy, both during the operation and post-operatively. (See Denault) Sugarbaker believed a colostomy would prove unnecessary.
Dr. Sugarbaker operated on Adam on March 26, 1996, two days before his 17th birthday. He was released from the hospital clinically free of disease less than three weeks later and then made a remarkable recovery from the surgery. He was soon able to resume many of his normal activities, singing in the Spring Choral Concert, attending the Jr.-Sr. Prom, but not strong enough for taking up his sports again.
Unfortunately, his May ct scan revealed a small spot around the liver and in June he was put back on chemotherapy - vincristine, ifosfamide cisplatin, and etoposide (VICE). A bowel obstruction, a common complication from extensive abdominal surgery, interrupted his treatment in July. This required another surgery to unkink his bowel. He resumed his chemotherapy in August, but discontinued the VICE protocol in September after a scan revealed a small amount of tumor growth.
Next came a course of topetecan, which he did on an outpatient basis. Unfortunately, he did not tolerate this treatment very well. He required numerous blood product transfusions and his counts still remained too low to continue on to the next cycle of treatment.
At this point, Adam was anxious to try an alternative treatment. In December, 1996 he began drinking concentrated liquid Aloe Vera combined with intensive vitamin/nutritional supplementation. He did very well - looked and felt great - he was able to participate in and enjoy much of his senior year in high school. In addition, to celebrate his 18th birthday, the Make-A-Wish Foundation sent Adam to England for a fantastic and truly memorable trip.
Sometime during this period, Adam made-up his mind against further surgery. The next surgery would have been his fourth.
Unfortunately, his May scans were disheartening - the cancer had spread further and was now in his liver. The family began considering clinical trials and the possibility of oral VP-16. But, immediately after his Senior Prom, Adam became ill - his right lung was filling with fluid. He had a very severe infection starting with pneumonia but also bacterial in nature. He had to spend his graduation in the hospital - he was there almost a month. Although Adam was confined to the hospital during this important time of his young life, his friends continued to show their love and support for him. Following the Baccalaureate Service a large group gathered below his window on the hospital grounds and held a candlelight vigil where they held hands, sang and prayed. Dr. Ungar told Adam he would get him to graduation if that's what he wanted - but they would postpone for a few days a surgery needed to place drainage tubes into his lung. Adam opted to proceed with the surgery and forego attending the graduation - knowing he couldn't go the way he wanted to, he'd rather just wait to view the video tape being made and delivered to him that night. His class chose to all wear a yellow ribbon on their gowns demonstrating "hope and friendship" for Adam. When the last diploma was given, his name was announced in abstentia and they all rose, cheered and clapped - what a wonderful loving tribute to him.
Upon his release from the hospital, Adam finally began the oral VP-16 treatment, but it had a devastating effect on his blood counts and he required substantial blood product support. Initially they thought it was definitely helping -the jaundice and swelling he had been experiencing was greatly reduced. At this time, Adam was determined to get to the beach, his favorite place. His Mother and he went to his Aunt's place in Delaware. Adam wanted so much to be normal - he insisted on walking the boardwalk their first night there. The next day they got to the beach to relax and read and the next day to the outlets for shopping. But by that time Adam was beginning to show signs of extreme fatigue and his mouth and lips were becoming ulcerated and bleeding. They called their doctor who had them check into the local hospital for blood counts, which were very low - thus requiring transfusions of platelets and red cells. The oral VP16 was stopped and Adam went home to check in with his doctor. With the fast progression of the disease and the involvement of the liver, clinical trials were no longer an option. At this point came the realization that there wasn't anything more medically that could be done. Adam wanted to be at home with his Mom, Dad and older brother Joey, his friends, extended family and in his familiar surroundings.
Adam passed away in the early part of September, 1997. I leave it to his mother, Maryellen, to describe his passing and its accompanying grief and the celebration of a life well-lived and a battle well-fought.
I'm so heartbroken...my Adam went home to the Lord last Tuesday 6:55 a.m. This is very difficult for me to write here. I've just been trying to compose some letters to his loving friends that had participated in his Memorial service held this past Sunday. It was a glorious service of thanksgiving and praise for Adam, a celebration in knowing he is with the Father, his friends gave some moving and funny recollections of him. One sang for him and the high school concert choir along with the kids who had graduated sang. It was beautiful...four hundred came to honor him... He was such a special boy, so full of life and getting the most out of it... Adam had just seemed to take a turn last Saturday. But all I can say now is that he went very peacefully, the angels came and carried him over. I know how he didn't want to give up but at the end he gave into the Lord's will. I'll never understand and I guess we aren't supposed to. We held his hands and let him go-I think the hardest thing I've ever had to do. Please continue to pray for me as I pray for you for I know it is only the arms of the Lord that upholds us or I would shatter.
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