Miracle Kids

Collin

Eight-year-old Collin has a captivating set of dimples, bottomless brown eyes, the intelligence of a much older child, and is a cancer survivor. It's hard to accept that this vibrant little boy began undergoing treatment for leukemia when he was 3. There he is in the backyard pushing his baby sister in her swing, lugging a big net full of baseball gear across the grass, sitting in his daddy's lap and smiling a lot.

In hindsight, Collin's parents Todd and Kristy remember that in the summer of 2000, 3-year-old Collin seemed to be tired a lot and wanted to be carried around. The first Monday in October, Collin had a fever that would not go away. Despite several visits to the doctor, he still had the fever on Friday, and it was suspected that he might have pneumonia.

By that same Friday evening, Collin was listless and Todd and Kristy took him to the after-hours clinic at Scott & White Hospital in Temple. Says Todd, "He looked pale and tired when we got there. When they took blood, he just sat there. Usually, it's a big fight just to give any child a shot, but he was so sick, he didn't even move."

After having the blood drawn, Collin's family returned home to a message from the doctor saying they needed to immediately go back to the hospital. Something was very wrong.

Collin was checked into the hospital. His heart was racing, he wasn't getting enough oxygen to his organs, and he needed a blood transfusion right away. Todd and Kristy were told that Collin probably had either an unusual virus aplastic anemia, or leukemia. But they wouldn't know for sure until Monday. It was a stressful weekend for the family and they spent the time collecting information and asking questions.

Todd and Kristy kept careful notes related to Collin's treatment that later became a diary of sorts. Todd wrote on Friday, October 6, "We went to sleep with leukemia on our minds. Collin still running a temperature. Mommy slept with restless Collin. Dad on rollout." On Sunday, he wrote, "Collin broke our hearts – he said he didn't want to be sick anymore. They gave him some Tylenol and temp went from 102 to 100."

On Sunday, Collin's family would meet their pediatric oncologist that they would be getting to know quite well over the next two years.

On Monday, Collin had to have a bone marrow biopsy. He had "magic milk" anesthesia through an IV. Later that day, Todd and Kristy saw the pediatric oncologist coming down the hall to deliver the diagnosis. They waited about five minutes in Collin's room for the news to arrive. "It was the longest five minutes of our lives," wrote Todd in his notes.

Todd and Kristy were informed that their 3-year-old little boy had leukemia, a cancer of the white blood cells that starts in the bone marrow. It was unforgettable – and yet so shocking that it can't quite be remembered. Said Todd, "It was one of those moments where you don't hear the periphery. You're crushed inside. But you don't have any choice but to move forward." Says Kristy, "We felt every minute ticking by and wanted to start treatment as soon as possible."

Initially, Collin's blood had the appearance of B-cell leukemia, the most aggressive kind of leukemia. His treatment would also be aggressive and immediate. Collin endured a flurry of tests to determine the type and extent of the disease, all done in the short space of one day. A port was installed just under his right collarbone to allow medication to go directly into his system. You can still see the port today beneath Collin's collarbone - it has the appearance of an odd-shaped light switch under a thin covering of skin.

The family was stressed and that stress was about to multiply. Two weeks before Collin was diagnosed, Kristy happily announced to the family that she was pregnant with her third child. Two days after Collin was diagnosed, Kristy's mother in Waco was also diagnosed with cancer and would join Collin in facing a regimen of chemotherapy. Says Todd, "It was a rather somber time around our house. It was unbelievable how Kristy held it together."

Little Collin stayed in the hospital for three weeks with mom and dad by his side. The first week of therapy was very intense, an aggressive treatment for an aggressive cancer. "He was pale, he lost a significant amount of weight, his eyes were recessed. It broke our hearts," said Todd.

After a week of intensive therapy, a small note of good news came from Collin's previous lab work. The leukemia that looked like B-cell was actually pre-B cell, a less aggressive form of leukemia. Collin was immediately switched to the less intense, lower dose chemotherapy protocol, which would last for two and a half years.

To help children and their families adjust to the ordeal of cancer treatment, some hospitals are staffed with child life specialists. These professionals are especially equipped to ease the treatment regime, focusing on the emotional needs of children in hospital settings. Jenny Damron was the specialist who most often saw the family. Says Jenny, "Our job is to reduce the stress and anxiety and to promote normal emotional growth and development." One of the stress reducers is called 'medical play' where children get to use real medical equipment on dolls, usually related to a procedure the child is about to receive. One doll had a port installed, the same surgery that Collin had during his first week in the hospital. "Collin would assume the role of the doctor, and he really loved it," says Jenny. "The big purpose is to give the child some control over something they have no control over."

On the home front, Todd's parents in Georgetown and Kristy's parents in Waco helped out by making their homes a safe and frequent harbor for Collin's two-year-old little brother, Nathan. Neighbors, friends and Grace Episcopal Church members brought meals almost every day for the first three months, as well as care baskets with snacks to take to the hospital. "We were surrounded by people that wanted to help us," says Kristy.

It wasn't always easy being positive. The toughest part, says Todd, was "holding back the tears when your pale, limp, weak child tells you that he is ready to go home – that he is tired of being at the hospital. Wishing and praying you could trade places with him. And then the realization and paranoia of the thought that one little germ can possibly take your child from this world."

When it came time for Collin to go home, he developed a bad bacterial infection and had to be sent home with tubing to administer antibiotics through his newly installed port. But he was mainly just glad to finally be going home. There were six planned hospital visits, once every three weeks, for two to three days, for methotrexate chemotherapy. The first year, Collin also went back to the hospital four times with a high fever. Says Kristy, "We kept a bag packed because we never knew when a fever would send us to the hospital."

Child Life specialist Jenny Damron was impressed with Collin's grasp of the situation and said, "Collin understood his diagnosis and treatment. Collin is head and shoulders above many of the kids his age. At three years old, he could tell me he was 'there for his methotrexate.' He couldn't run and play like other kids – so he learned to read at four years old."

Says Todd, "Collin grew up so fast. He would listen intently to what the doctors said, and break it down overnight, and know exactly what was going on by morning. He was so sick and exhausted physically that reading and being read to was one of his only outlets."

Children with leukemia sometimes need to be isolated from other people and normal activities. Collin had low blood counts during his first year that caused his immune system to be compromised. To protect him from bacteria and viruses, he could not be around others when his blood counts were low. Everyday things like playing with friends or going out to eat or to the grocery store were off limits. "It was difficult, but luckily Collin had his brother Nathan—and they formed a very close bond and a friendship that will last a lifetime," said Todd.

In the fall of 2002, Collin was faced with another hurdle. He contracted chicken pox, a disease on the top of the list of those deadly to children with leukemia. And, indeed, chicken pox is the last thing you want a little boy with a compromised immune system to have. The family was moved to an isolation room with its own special ventilation. "We were segregated for a couple of days in a protected environment. It was very, very serious." Collin overcame the chicken pox scare and then after continuing intensive treatment for almost another year overcame leukemia.

Collin has been off all therapy since June of 2003 and now just comes to the clinic for follow-up appointments every three months for a thorough physical exam and blood tests to be sure he is still in remission.

Collin has moved on and put cancer behind him. He will be entering third grade in the fall and loves school and playing tennis. The last two summers he has enjoyed being a camper at Camp Dreamcatcher, a camp created by Child Life at Scott & White for children who have cancer or are in remission, and has even been able to take his younger brother Nathan along with him. And he is always sure to come back to the hospital for purely social visits, especially to see his friend Jenny (Child Life)!

Says Todd, "Collin is such a special child. His strength and smile shine through and have touched all the people that have treated and cared for him. He is only giving back the love that these wonderful people give every day. They have got to have the most difficult job in the world, treating children with cancer. They don't have to choose such a heart-wrenching occupation, but they selflessly do – and we commend them for their strength, determination and love."

If you would like to make a difference in the life of a child like Collin, please consider becoming involved with CMN. CMN can be reached at 254-724-2022.

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