PeekabooNWA

A Celebration of Survivors: Scott’s Story

Posted on 01. Mar, 2009 by admin in Personal Stories

Most people remember 2001 as the beginning of our country’s war against terrorism, but our family will always remember 2001 as the beginning of our own type of battle.

The year started out as most years before it: we were busy with our kids, Kate, 12; Beth, 10; and Scott, 6, and the many activities and ‘outs and abouts’ that go along with them. The first few months came and went and then in May I noticed Scott’s neck glands were very large. He said his throat didn’t hurt but his left eye had looked droopy for a couple of days and he was tired. He was waking up in pouring sweat but the thermometer never registered he had a fever. (This was a symptom we hadn’t heard about but were later told was an important and easy to spot symptom.)

Scott’s white blood count was 19,900 (normal 8-10,000) so the clinic did a smear to determine if it was an infection.

The second blood test showed the count had risen to 25,000 in just 24 hours. It was then that the pathologist identified leukemia cells. We were devastated at the news. We chose to take him to Tulsa for treatment because my husband Jim works in Catoosa and we have family nearby. We learned that throughout the country, the Children’s Oncology Group (COG) follows the same protocol and offers the same treatments as what we would find in Little Rock or at St. Jude, so that provided much comfort.

Because it was Memorial Day weekend, we had to wait until Monday to take Scott to St. Francis Hospital. By then his count was up to 45,000. A bone marrow biopsy showed 95% of the bone marrow was made up of abnormal cells. When we got the diagnosis my heart ached, literally. We went thru all the emotions: scared, sad, and I felt sorry for Scott. I think we kept asking ourselves ‘Why?’ Jim said it best: we just have to rely on God, Scott’s in his hands.

The doctor did a great job educating us about the disease and the treatment. We joined a COG research study that changed the protocol of administering an oral drug instead of IV. This study will help the doctors analyze and compare responses to therapy and track the cancer both short and long term.

Scott had surgery to install a port-a-cath in his left chest area that would make it easy to administer high doses of chemotherapy. They started several types of chemo and gave us a “roadmap” (scheduled treatments) for the next 2-1/2 years.

Scott had just turned six and felt picked on. The first days in the hospital, he was down and mad. He didn’t like the medicine, shots and treatments.

The first 28 days involved several types of chemo including IVs, leg shots, spinals and high doses of steroids. I had never felt my heart hurt like this — a constant ache because this 6-year-old who didn’t even feel that bad to begin with is now forced to take these drugs and painful tests that caused him to feel worse. The leg shots were the most painful but the steroids had the most dramatic effect on Scott. The steroid made him hungry all the time; he would eat until he was so full, uncomfortable and moaning. Then just 30 minutes later he would want to eat again.

When we started going to the clinic every week, the nurses become his best friends and Scott usually came out of there with a smile. We all came to appreciate how easy Scott’s treatment was compared to others that we would see every week. There was always someone at the clinic that made us realize we were not alone and that it could be so much worse.

The most challenging part was the mental toll it took on our family. Just knowing that we were not in control. We feared that at any time he could relapse and that kept us on edge through the entire process. It was hard to watch the physical effects the chemo had on Scott’s body.

At the end of the toll-taking cycle, he was tested and officially in remission. Over the next five months, Scott had his blood tested every week with a spinal and four hours of chemo intravenous every 21 days. The hospital stays usually lasted 2-3 days following the treatment to flush the chemo with fluids. Scott handled all the treatments like a trooper. The next two years they continued a few select drugs to ward off a relapse (‘maintenance’ phase).

We look back and can see how the Lord placed so many people in our lives that helped and prayed. It seemed like when things were really bad there was always someone to help–at church, school and with family and friends.

There was even a mom that made Scott a padded-port-cover so that his port would be protected during soccer games. He wore it under his uniform. He didn’t like it but it made me feel better.

Thanks to the American Cancer Society, Scott gets to attend a cancer camp every June with the clinic nurses and doctors. It is the highlight of his summer. The kids benefit, and the doctors and nurses also enjoy the time to have fun with the same kids that they treat.

Realizing how the American Cancer Society helped our family, we wanted to be a part of that team. In 2003, a church friend, Lane McLoud (breast cancer survivor), put together a team from the First United Methodist Church for the Relay For Life in Siloam Springs, and we joined. Scott looks forward to participating every year; he and Jim camp out and take their turn walking the track to raise money to find a cure. At 13, Scott now understands how big the battle against cancer can be. This is a great opportunity for everyone to help give back to the American Cancer Society.