Living in Dawsonville, Georgia at the end of the summer of 2000, Josh Sage was an average three and a half year-old little boy. He loved to play outside and swim. His big sister, Shelby, started school in August, as they do in the Georgia public schools. While Shelby was in school, Josh’s Mom, Sally Sage, had lots of time for Josh and they spent a lot of time outside in the warm weather of the late summer of Georgia. Everything seemed normal and routine for the family of CJ and Sally Sage, an average middle class American family with two children. Then, one day their lives were all changed forever.
The ER physician said, “I think your son has leukemia.” This was the beginning of a journey for CJ, Sally, Josh and Shelby that no one wants to take.
As Sally describes it, “I remember the day, the weather, the pants I was wearing, the doctor in the ER, everything up until I heard those words. Then it’s kind of a blank for a couple of days.”
When Josh was diagnosed with leukemia, life changed for everyone in his family. The treatment for leukemia required doctors to hospitalize Josh for several days at a time, every week for months. He had to endure chemotherapy and steroids, and host of other medications and treatments. When Josh was in the hospital, CJ and Sally had to divide the family responsibilities, with Sally traveling to the hospital and living there with Josh, while CJ tried to keep family life at home as normal as possible for Shelby. All the issues facing Shelby became CJ’s responsibility, while Shelby had to focus almost exclusively on little Josh. Then they would switch to spend time with the other child. It was hard to try to keep balanced.
The treatment for Josh was as difficult as the disease. Certain medicines the doctors prescribed for Josh caused severe adverse side effects. Josh had always been a very sweet, affectionate child, but while undergoing steroid therapies, Josh seemed to be transformed from a sweet child into a raging lunatic who needed to eat around the clock. To watch your childs hair fall out is gut wrenching. Another medicine made Josh very susceptible to motion sickness, so he would vomit in the car when Sally was driving Shelby to school almost daily. The Sage family had to ask their wonderful neighbors to take care of driving Shelby.
The family’s day-to-day focus centered around Josh’s treatments and the tests conducted by the doctors to evaluate the effects of those treatments. In no time at all, CJ and Sally became very knowledgeable about blood count figures and test results. Were the treatments working against Josh’s leukemia? If a test result came back low, the treatments had to be rescheduled. The Sages had to monitor Josh’s condition constantly, always on alert for a fever or other adverse reaction that would require them to rush Josh back to the Emergency Room.
“There were midnight trips to the ER more times than my fingers can count,” recalls Sally. At times it seemed like the disease was conspiring to be sure that the Sage family could never visit their family or enjoy a vacation. “Every single trip we took out of the state of Georgia from 2000 through 2003, something came up and we had to rush Josh to the closest emergency room. It became a joke between the doctors and our family, wondering if Josh was on a mission to tour ERs in as many states as possible and discussing in which state our family’s next ER visit would occur.”
Josh’s treatment for leukemia went on for a period of three years. Emergency room visits, inpatient stays in the hospital, chemical treatments and medicines that made little Josh sick and out-of-sorts for long periods of time, and extremely painful procedures that included spinal taps were all part of what Josh and his family had to endure. Through it all Josh never complained. The entire process brought Josh and his mother closer together, as they endured it all together and developed a special bond and routines for dealing with the worst of it. When Josh had to have his 19 spinal taps, he would sing Beatles songs his Mom had taught him, while the procedure was going on and he would whisper “Mommy, I love you.”
When Josh turned five, it was with some trepidation that CJ and Sally signed him up to play soccer. The other children his age were signing up, but they were worried about how Josh, still in the middle of his treatments, would be able to handle it. Nevertheless in the fall of 2002, Josh began playing soccer in a Park and Recreation league in Dawsonville Georgia.
For CJ and Sally, watching Josh get involved in soccer was inspirational. “It was just the beginning of watching an amazing little boy play a game he loved, even when he didn’t feel up to it,” says Sally. There were days when Josh felt terrible and his parents were not sure whether he would want to go to the soccer field. “Josh learned early that you have two choices: you can feel yucky and sit out, or you can feel yucky but play, run, and kick anyway,” says CJ. Josh did not let leukemia stop him from doing what he wanted to do.
For Josh, soccer was an activity that took him away from all the medical issues in his life. “There were many times that clinic days would fall on the same day as a practice or a game. There were never any fun procedures when we had to go to the clinic,” According to Sally. “But it didn’t matter to Josh if he had had a spinal tap, shots or intravenous antibiotics that always made him sick, he was not going to miss practice or a game.” He would leave a practice or game and just say “I LOVE SOCCER!”
Josh says he loves soccer because he likes running fast out on the field. He also looks forward to soccer games because they give him a chance to spend time with his friends, both friends who are on his team and friends from other nearby schools who are on the opposing teams – one of the features of living in a small town.
Visits to the clinic and the medications he was taking often left Josh without any strength. He could not run more than a few steps without having to rest. There were days when it did not seem to Sally that he would be able to do anything at soccer practice. “I knew some days he felt worse than others and he would battle fatigue on a daily basis,” remembers Sally. “But Josh let us know that when it came to soccer, he was playing! There were no ifs, ands, or buts about it – if there was a soccer practice or a soccer game, Josh was going.” He always found the strength to play his best.
Josh’s favorite position is forward and he’s not afraid to take the ball away from players on the opposing team. Throughout his treatment, he met other children with leukemia and other blood cancers and he knows that many of those children battled leukemia until they could battle no more. Every year when the players on Josh’s soccer team are asked what number they would like to wear, Josh picks either #10 or #8 to wear in memory of boys who were friends of his who lost their battle with cancer. Every time he walks on the field, he honors the children who no longer get to play.
Josh enjoys participating in Leukemia & Lymphoma Society activities and events as an “Honored Hero,” a leukemia survivor. He says “It has been really great to meet so many nice people.” The Society has provided patient services to the Sage family throughout Josh’s battle with leukemia, and he adores Ms. Terri, the Leukemia Society Patient Services Manager in Atlanta. Josh, Shelby and their parents have participated in many Leukemia & Lymphoma Society events and Josh says he does it to help find a cure for other children like him.
In 2003, when Josh had just completed his last round of chemotherapy, the family celebrated by participating in the Light the Night Walk in Atlanta, Georgia. Josh, as a survivor, carried a white balloon and his Light the Night team, “Joshua’s Friends and Family,” dedicated their walk to Josh’s departed friends, Zane, Bethany, and Killian, and raised about $5,000 in their honor, and Josh was very proud to go up on the stage and participate in the walk as one of the leaders, an honored hero.
In the summer, Josh spends time at Camp Sunshine, a camp for children who are cancer patients and survivors. Josh thoroughly enjoys Camp Sunshine, but every summer he thinks about and pays respect to friends from past years whom he will not see at camp this year.
Josh is now 8 years old and has been off treatment for 2 years. He still has to visit the cancer clinic every three months, but this fall he will start the survivor’s clinic, and will only have to visit every 6 months. The survivor’s clinic will monitor the long term effects of chemotherapy on Josh’s body and the effects on his neurological skills.
For the entire Sage family, Josh’s odyssey has changed their lives forever. They have shared their journey with many people in their community and they are active members of the Leukemia and Lymphoma Society and they support all of the Society’s programs. Participants in the Leukemia Society’s Team in Training Program all select an Honored Patient Hero as their partner, when they train and compete in marathons, triathlons and other track events while raising money for patient services and research funded by the Society. Josh has served as an Honored Patient for a recent Disney Marathon.
Another Leukemia & Lymphoma Society program, Pennies for Patients, involves more than 6 million children in more than 12,000 schools raising money for the Society. To help children understand the importance of the funds they are raising, both Josh and his sister Shelby speak to all classes in their school, to let them know that the beneficiaries of their hard work to raise money are kids like Josh and their family members like Shelby. Josh and Shelby’s school, Blacks Mill Elementary participates in Pennies for Patients, and Shelby’s class raised the most money of all of the classes in the school for two years running. To the Sage family, Josh’s health is a gift for which they are so very thankful. “Everything is a reason to rejoice. Every game Josh plays is a milestone and every goal he makes is a miracle.” It’s a lesson that Josh and his family can teach us all.
