Spencer's Story
His brave fight against Cancer
Spencer's story started long before he was diagnosed in September of 1997. He had complained for a very long time about pain and discomfort, but it took many visits to the doctor's office and many months to pass before we learned that he had cancer. After that day, our life, as we knew it, was forever changed.
Spencer had just turned 8 years old and was starting 2nd Grade at a new school, Melrose Elementary, a small country school. He was so excited about going to school and loved his new teacher Mrs. Kuitert immediately. His sister Shelby was in 1st Grade. Spencer was very shy and needed help with his speech. Our new school had a speech teacher, Debbie Case, who would help Spencer learn to say his words clearer. They also had a Special Education Teacher, Bonnie Ringen, who would make sure he got all the help he needed.
On the 3rd day of second grade we learned with the help of an ultrasound that Spencer had a mass on his left adrenal gland. I can still remember Spencer holding my hand tightly and asking me if he was going to die. I remember telling him that we are all going to die one day, but only God knew when.
The city we live in is not very large. There is no major pediatric hospital there. We were told, by the radiologist who found the mass, we would have to go out of town to obtain medical testing and treatment. We packed our bags and proceeded to drive up to Portland, Oregon, which is about 3 hours from home. After our arrival at OHSU in Portland, the parade of doctors and doctors-to-be started in his room. He was poked and prodded and we were asked question after question from before birth up to the present. Then the true testing began: Spencer was put through a bone marrow biopsy, (he was not given a sedative- I can still remember how he screamed while they held him down) bone scan, blood and urine tests, CT scan, MRI and biopsy of the lump on his head. After waiting for what seemed like an eternity for all the test results to come back, we were finally told that Spencer had a rare childhood cancer called Neuroblastoma and it had spread to almost every part of his body. The doctors there put in a Hickman (a central line in his chest) so that they could give him chemotherapy to fight against the cancer.Spencer knew that he had "bad cells" in his body and the medicine they would give him would help kill off the "bad cells".
They gave him his first round of chemo. His dad spent the nights with him in the hospital and I walked over to the Ronald McDonald House nearby and tried to sleep. While we were there, Spencer received hundreds of Get Well Cards, flowers, balloons and stuffed animals- enough to fill his entire room. After 10 long days and nights we headed back home and were told to come back in 28 days. But we did not go back to the hospital in Portland, Oregon.
On October 8, 1997 we flew to one of the biggest cities in the world, New York City, to meet with specialists whose main goal in life was to find a cure for Neuroblastoma. We met with Dr. Nai-Kong Cheung, Dr. Brian Kushner and Dr. Kim Kramer. We stayed at the Ronald McDonald House in NYC and started the long testing process all over again. We decided that Memorial Sloan Kettering Cancer Center in NYC held the best promise for us.
Spencer started his first of seven very aggressive rounds of chemo. The dose of chemo he had received in Portland seemed like nothing compared to the new dosage at MSKCC. He was nauseous, vomited, and had no desire to eat. His counts dropped dramatically.
In November we decided we needed the whole family to be together and had my sister fly Shelby to New York. We knew we would be there for a long time. Shelby was enrolled at St. Stephens School in the first grade. I walked Shelby to school everyday and dad pushed Spencer in the wheelchair the five blocks to the hospital everyday. Spencer's chemo was outpatient- so every night on chemo he would come back to the RMDH with a backpack of chemo and fluids. During this time, Spencer was in and out of the hospital. He had numerous nosebleeds due to his low platelets. We ended up in the hospital with fever and low counts. Spencer was given countless units of blood and platelets.
When the doctors suspected infection, they would have to put in a peripheral line in his arm. He hated to be poked with needles. During one of these times, as the nurses were trying to hold him down and put the needle in the vein in his arm, he cried and screamed that he had had enough and did not want to do this anymore. But we told him that to get rid of the bad cells, he would have to continue. And he did continue to fight the battle – the battle of his life.
During this time we meet so many wonderful families who have given us the courage to continue on. Spencer grew close to many of the special children that also were battling cancer. Spencer also grew more independent. He learned to express his feelings to the doctors and nurses and tell them how he felt.
In January of 1998, Dr. Laquaglia took out Spencer's primary tumor. While it had not shrunk like the doctors had hoped for, Dr. Laquaglia felt he could remove all of it. Spencer's paternal grandparents flew in for the surgery and they stayed with us at the RMDH. I can still remember how his grandpa told Spencer jokes and Spencer's big smile as he was wheeled into surgery. The hours passed and finally the surgery was over. Dr. Laquaglia called us in the waiting area and told us he was able to remove the whole tumor. After surgery, Spencer was taken across the street via ambulance to New York Cornell Medical Center's intensive care unit. It was a nice room overlooking the East River. He recovered very quickly and the tubes were taken out of his body one by one. Two days later he was sent back to a room on the fifth floor at Sloan. There they started another round of chemo, his 5th round out of seven.
After that round of chemo they started to give him antibody therapy. The antibodies were painful usually during the last 45-90 minutes and the children were given narcotics to control the pain.
In May of 1998, Spencer's dad was needed back at work in Oregon. They had been very gracious about letting us stay together for 7 months, but they were short-handed and needed him to help out. Shelby also went home and finished out her last month of first grade there.
During the following months, Spencer had his last two rounds of chemo. The doctors continued to re-test Spencer, but the word "remission" continued to elude us. He continued to have disseminated disease throughout his body. From his diagnosis weight of 60 lbs in September of 1997 his weight dropped down to 44 lbs. He had no appetite and ate very little.
After finishing all seven rounds of chemo, Spencer then began 9 weeks of radiation to his head, spine and primary tumor site. The hardest part was the simulation, where they placed tattoos on his head and chest and molded a mask for his face while he laid perfectly still. Through it all, he kept up his spirits and joked with the technicians and after radiation was finished he asked if he could have his blue face mask. It is now proudly displayed in Spencer's bedroom and he shows it to everyone who comes over and tells them all about his radiation experiences.
In August, while we were preparing for the transplant portion of the treatment, we were told that due to the extent of his disease, we were being pulled off the protocol.
We were offered several options and chose to continue the antibody therapy. For us it seemed the most "benign" form of treatment. We have now been on the antibody therapy for over 1 year. Spencer's tests are still showing disease, but it is classified as "stable".
We now stay home in Oregon for four weeks and then we fly back to New York for two weeks of treatment. Spencer is in school again, the 3rd Grade with Mr. Poe as his teacher. He sits right across from his sister Shelby. He looks forward everyday to going to a "real" school. Spencer loves to draw and has learned how to play the piano. He loves to play Game boy and Nintendo 64. He loves his dog BenG. He loves to swim. He loves to play jokes and do magic tricks. His bedroom has many of his New York memories displayed all around it. He loves the New York Rangers Hockey Team. He loves being home most of the time!
When we are in New York, he loves seeing his special friends at our home away from home (Ronald McDonald House) and the all the children whom he has gotten to know and plays with.
While we don't see an end in treatment, Spencer knows he is going to continue treatment until he gets rid of all his "bad cells".We pray each and every day for a cure for all cancers.
Spencer and his sister Shelby (above)
For the tremendous bravery that Spencer continues to show throughout his lengthy treatment, the JSF Foundation proudly awards Spencer Bailey the Grand Prize Trophy, a specially carved "Heavy Hitter" baseball bat with his name carved in it, a Nintendo 64 Pokeman Stadium Game, and a Nintendo 64 carrying case. Spencer, here's to you! You deserve it.
