August 22, 2006, will go down as a day of infamy for me. I had just finished with an oral argument before the Missouri Court of Appeals that had gone really well. I was walking to my car feeling pretty good when I received a call from my wife. We had been separated a couple months and were close to filing for divorce. She had taken our three–year-old son, Carter, to the pediatrician because he had developed several small, red bumps on his body. I just thought it was a rash. This is the one time I am eternally grateful that Lisa, my now ex-wife, didn’t listen to me. When she called, she said that the pediatrician wanted him to be seen by a pediatric oncologist immediately. I rushed to my car and raced to the Cancer Center at St. John’s, about a 30 minute drive from downtown St.Louis. I couldn’t tell you anything about that drive if my life depended on it. I got to the Cancer Center about the time that Carter and his mom were walking out of the parking garage. Carter, being a typical three-year-old boy, ran over to me and I picked him up. We walked into the Cancer Center and found the office of Dr. Bergamini. They took us right into an exam room and he conducted a physical exam. He then ordered a blood test. After what seemed like hours, he came back into the room and stated something that I will never forget. He said “it looks like leukemia.”
I will never be able to describe the feeling that shot through my body the instant he said those words. I didn’t know anything about leukemia other than a friend of mine, Danny May, who was on the same basketball team as me in junior high, had died from it when we were in high school. It was a complete state of shock. Lisa was crying and I was just speechless. Meanwhile, Carter had no idea what was going on around him. Then the doctor said, “It’s okay.” He said the type of leukemia he had could be treated and it had a very high cure rate. Carter was immediately taken to the pediatric ICU at the hospital and admitted. He was scheduled for surgery within hours to put a port into his chest to be used for chemotherapy. Meanwhile, our daughter, Noel, who was 7 at the time, had to be picked up from school. As much as I hated to leave Carter’s bedside, I knew it was a time that he really needed his mom. I left to pick up my daughter from school.
I quit drinking several years ago. I have an allergy to alcohol. Every time I drink I break out in handcuffs (that’s not original. I heard my friend Sam say it). As I left the hospital, it was everything I could do not to turn into the nearest QuikTrip and pick up a bottle. I was so scared that there were times I didn’t think I could make it through this ordeal. By the grace of God, I had another child that needed me. Noel and I were buddies and I had to stay strong for her. Just her existence prevented me from making an awful decision. What followed was a 5-year journey that consisted of visits to Dr. Bob and his partner Dr. Rob, visits to the hospital for spinal taps and bone marrow biopsies, and all sorts of new things I could have gone a lifetime without experiencing.
Being self-employed, after Carter was in the hospital for the first 5 days, I had to start working again. It was helpful while at the same time being pure torture. It was good to try and get my mind on something other than white counts, platelets, and other medical terms I was learning. However, it was very hard to concentrate on anything for more than a few minutes. I tried to make as many of the doctor visits as possible. I was at the hospital for every spinal tap and bone marrow. Lisa and I would have moments where we got along and others where we didn’t want to be in the same room together, but we always seemed to be able to put those things aside during the treatments. Our divorce was finalized in May of the following year.
During this whole time, there was one organization that proved to be vital to surviving this mess. I’m sure all of you have heard of Make-A-Wish. That organization provides an opportunity for kids with serious illnesses to experience something they’ve always wanted to do. Carter went to DisneyWorld thanks to them. However, that’s not the organization to which I’m referring. The organization I am talking about is Firends of Kids With Cancer (www.friendsofkids.com). Friends was started about 20 years ago in St. Louis by Jill Turec (Ms. Jill), a Development Specialist working with Dr. Bob, and two mothers of children with cancer. At first, the organization was focused on providing fun to the kids going through treatment. They put together a toy closet at the doctors’ office so that the kids could have a toy to play with during treatments which could last several hours. As a result, kids were excited to see what toys they could get, instead of being worried about their illnesses.
The idea grew. Today, Friends assists in three main areas: Emotional, Educational, and Recreation. For me, the emotional support I received kept me going. The organization provided support groups for siblings and parents of children going through treatment. It was so beneficial to talk to other parents about the difficulties they were also facing. Carter was so fortunate that he had a very treatable cancer. Many of these parents had children that would not survive. However, Friends provided so much for these families to at least make their lives a little easier. The attention they paid to Noel was also very important. You can imagine how confusing it is for a 7 or 8 year-old to watch their brother or sister getting all this attention and all this stuff because they are sick. It’s easy for the sibling to feel left out.
The parties, free event tickets, shopping sprees, and everything else they do gives the families the ability to have fun and not worry about financial stress. Treatment is very expensive. Our health insurance premiums skyrocketed by almost 100% in the span of two years. My productivity at the office definitely suffered. It’s really difficult for both parents to work for the first few years because of all the doctor visits. It was so nice to be able to take the kids to a baseball or hocky game without worrying how I would pay for it. It allowed us to be like a normal family even though we were going through such a miserable event. They also provided educational assessments to see what, if any, effects the chemotherapy had. Once again, that was free to us.
Carter went into remission within 30 days of being diagnosed. He went through about 3 years of chemotherapy with various toxic drugs. I am happy to say that he was considered officially cured as of September, 2011. We just went to see Dr. Bob a few days ago and were told we could now go to annual visits. It’s exciting, but also sad in a way. The nurses, doctors, and Ms. Jill, become so important in your life while treatment is going on. They make the experience tolerable. I’ll miss that kindness. However, it’s time to move on so that Carter can be a normal kid. In the end, I will be forever grateful to Friends of Kids for everything they did for us. No amount of money would ever repay them for what they gave to me. They gave me hope and the strength to carry on by being able to see my kids happy and having fun.
If you are ever looking for a worthwhile charity to support, please consider helping this organization with the work they do. Unfortunately, their services will continue to be needed. I cannot imagine how anyone that went through the experience we did made it before Friends of Kids was there.
Jonathan E. Fortman, Carter and Noel’s dad.