SHELLY'S SONG

Seventeen days later we took Shelly to see an arthritis doctor, who, asked Shelly to walk across the room. She didn't like what she saw, and said “I want you to go and get an CAT scan, then report to the the Oncology ward, I believe she has Cancer”. And so our nightmare began.

The results of the scan came in, and we met with Dr. Patton, the Oncologist assigned to Shelly. Dr. Patton took Bonnie and me into a small, private room, and said, “Shelly either has Leukemia, or Neuroblastoma. Pray for Leukemia.” Further tests results would be coming the next day. The results showed Shelly had Stage IV, Neuroblastoma. Neuroblastoma is a malignant tumor of immature nerve cells that usually starts in the autonomic nervous system or adrenal gland and spreads quickly, most often affecting young children. The prognosis at that time was a 5 to 10% survival rate. I would have rather been hit by lightning than been told that.

As the word got out, two guardian angels would be at our side every step of the way. One was our friend Shirley Swires, and the other was Susie Hanes, an old school friend of Bonnie's. She had been a friend of Bonnie's, and once a friend, always a friend. Bonnie had found her and invited her to their class reunion. Now, when we were devastated, Shirley and Susie were there for us. For every doctors visit, every treatment, either one or the other would be there. When they couldn't make it to the hospital, they would call or come over shortly thereafter. They became our crutch. The day after Shelly was diagnosed, they came over and drank with us until we were feeling no pain. Susie's husband Ralph became a frequent visitor. It must be hard for men to show emotions, or go through something like this, because it was always Shirley and Susie that was there for us.

Doctor Patton said that there was a small tumor above her left kidney on her adrenal gland, and that they wanted to remove it before treating her with chemotherapy. So Shelly was operated on, one of many operations that she would be going through on our journey to overcome this dreadful disease. The tumor was removed, and I believed it was benign. Her scan had showed that her cancer was in her bones, through most of her body. They did another procedure, that sounds so simple, but it was a spinal tap, with a rather large needle into the middle of her lower back. Of course, Shelly was sedated at the time. Results of the tap showed that the Neuroblastoma was also in her bone marrow.

Dr. Patton outlined the protocol that is followed for treating Neuroblastoma, the guide lines specified by the American Pediatric Cancer Society. I believe the course of treatment was as follows: (2) treatments of chemotherapy with Irinotecan, followed by extracting her stem cells for future transplanting, then (4) chemotherapy treatments of Temodar. Each treatment required Shelly to be in the hospital at least three days, then every 28 days another treatment would start. Between treatments, we would take Shelly in for counts, where blood would be drawn and the chemistry analyzed and given to the doctors. If her counts were low, she would be given platelets, or white blood cells, or other medications the bring her chemistry, or counts into the normal range.

Well, the first of Shelly's treatment left her ill, so it was six days before we could bring her home. The second treatment was worse, as she spent 10 days in the hospital. It just seemed like our little girl just couldn't fight off the effects of the chemotherapy. Her stems cells were harvested, and were cancer free, which would be necessary for transplanting (stating the obvious). We felt that Akron Children's Hospital was one of the best in the state, if not the country. Unfortunately, we discovered that they did not have the capacity to store cyrogenically, which the stem cells needed, for future use; consequently, they shipped them to Children's Hospital of Cincinnati.

At this time, two more very important people entered our lives. Dr. Laura Gerak, a child psychologist and Reverend Carol Harrison, the hospital Chaplain. The amazing Dr. Laura would go from room to room, playing with the kids that were confined to their room. One day she showed up with a sheet, a jar of white sand, and a jar of sea shells, that she said she collected from Sanibel Island, Florida. She spread the sheet out on the floor, and invited Shelly to join her there. She then proceeded to dump the sand out and then the seashells. She and Shelly played with them, and Dr. Laura promised to bring them back the next time. Shelly really bonded with her.

Reverend Carol was new to the area, and we discovered that she lived relatively close to us. She would play with Shell, and would pray with all of us. She just had that way to relate how we were feeling, and what we were going through. We had invited Rev. Carol to our home for a few meals, and enjoyed fellowship with her. With warmer weather, she would get in Shelly's 'Bouncy House' that we would blow up on our back deck. Carol and Shelly would have a grand old time. She became an integral part of our support team.

Shelly enjoyed watching the animated video “Barnyard”. She particularly enjoyed Sam Elliott's rendition of Tom Petty's song “Won't Back Down”. She asked if her mother would download it to her I-Pad. She would go around the house with her head phones on singing along at the top of her lungs. It was a real treat, but, unfortunately, she must have gotten her singing ability from me, who couldn't carry a tune in a bag. That didn't stop Shelly. She would sing her heart out, singing with a stern look on her face

as a four year old, she didn't quite understand the words, mistaking pell for hell. She performed for Rev. Carol on one of her visits. Carol thoroughly enjoyed it, and would always think of her performing.

After a couple treatments Shelly was returning to her old self, and we enrolled her in the Revere pre-school, which was for children living in the Revere area. June came, and not knowing how much time we had, or, how much time Shelly had, we prepared for a large fourth birthday party for her. We purchased a 36” inch, 15 foot round above the ground swimming pool, set up two large tents, and had about 50 family and friends attend. Shelly had her energy back, and, except when she was in the hospital, would go, go, go non-stop. We older people, read me, would usually be exhausted by nine in the evening, but Shelly continued usually until 11 or so. We usually turned over responsibility to Allison in those late hours.

Before Shelly got sick we had planned a cruise for April, but the doctors told us to cancel it, because she would be in treatment. We agreed. We asked about our Disney Cruise/vacation in October, and they indicated that should be OK.

After her last treatment towards the end of August, the hospital took another set of scans, in anticipation of doing a stem cell transplant. They called us in for consultation. Not good news. We were taken to a small lounge ( boy, I was starting to hate these small lounges) where we were told that her cancer has progressed, and that she was not eligible for a transplant. That we would not have her by Christmas, and we had better go home and prepare. We all were flabbergasted, I mean, look at her, running, playing, except for having very little hair, she was acting like a child, I was going to say normal, but no normal child could keep up with her.