Very few people have the opportunity to say that their greatest inspiration is their child. Not everyone has had a child who was diagnosed with cancer. Christian Gordon Barker, born May 6, 1993, was the paragon of patience and courage. Despite fighting insurmountable odds for twenty months, facing long bouts of hospital time away from the majority of his family, and suffering through almost constant pain and treatment, Christian always faced every problem with politeness and a smile.
Before you know about what Christian went through, you should know what he was like. Blond with blue eyes, Christian had a silly sense of humor, straight As, and a great love for his siblings and family. He loved giving “Christian hugs,” tight hugs that almost broke your back. He loved sports, video games, math, and drawing comics. These drawings are priceless to us now, as precious as the memory of Christian.
One week before he turned thirteen, I started finding a few bruises on Christian’s body, but I assumed this was due to a viral infection that was suppressing his immune system. On his birthday, he was running a low grade fever and, suddenly, I realized that his whole body was covered with bruises the sizes of baseballs. My first thought was leukemia. The next morning, I went to the doctor and demanded a CBC and a full blood panel. By 4:00PM that day, the doctors confirmed the worst: Christian had Acute Lymphoblastic Leukemia. He started chemotherapy immediately
Unfortunately, the bad news continued. We learned that Christian’s cancer had a cytogenetic involvement known as Hypodiploid ALL, a rare (8-10 diagnoses per year in the US) form of ALL with a low survival rate. The only hope was a bone marrow transplant (BMT). Fortunately, our other two children were identical matches. We flew to Seattle’s Fred Hutch/ Seattle Cancer Care Alliance (the best BMT facilities) with Garrett, our son, in order to complete the transplant. Garrett’s surgery lasted over two hours, and the doctors punctured his iliac crest over 200 times to retrieve 750CC of bone marrow. During the next several months of treatment and tests, I lived in Seattle with Christian; my husband and our children, Garrett and Kendall, lived in California but flew to Seattle every two weeks for a visit. At the time, we thought this would be short-term; we had no idea that our family would be broken apart for 1.5 years.
The BMT went well, although Christian had to endure pain and nausea from the total body irradiation, and common side effects from a bone marrow transplant. We had high hopes that this would have destroyed Christian’s cancer and, after a bout of GVL (graft vs. leukemia), the last few hundred cancer cells were gone. Joyfully, we flew back to California during the week of Christmas in 2006, thinking Christian was cancer-free. We had this illusion of health for two months, at which time I discovered some red spots on Christian’s feet, a sign of low platelets. Our oncologist performed a bone marrow aspiration which confirmed that his cancer was back at 96% blast cells. A cancer this aggressive, and so soon after a BMT, generally implies that remission will be impossible. Additionally, Christian was experiencing severe bone pain and nausea, and he even coded from allergic reactions from strong, trial chemotherapy. Miraculously, he went into remission, and another donor was found for the second BMT.
Again, we were in Seattle for a BMT, and this one did not proceed as smoothly. Despite our feeling optimistic as the 100 day testing drew near, we were devastated to hear that the second BMT was unsuccessful and his cancer had returned. We were given two choices: let him go, or try eliminating the immunosuppressants hoping for GVL again. One possible consequence would be Graft vs. Host Disease (GVHD), which is life-threatening. Despite the high possibility of GVHD, we felt like we had no other choice. We discontinued immuno meds in September 2007.
One week later, Christian had developed GVHD. Despite numerous doses of Prednisone, he was vomiting several times per day, had a fever, and had issues in his liver, skin, and GI tract. I searched for meds that might help him, and we even tried a few, but none of them worked. For the last 3-4 months of his life, he was unable to eat, and he was losing large quantities of blood in his vomit and stool 15-20 times each day. His bilirubin reached 58 (normal is .1), his eyes and tears were yellow, and his skin was orange. Finally, on Christmas Day 2007, Christian’s liver began to fail, and he coded. At that point, we signed a DNR (do not resuscitate) instead of opening gifts together, as we had planned. Finally, on December 29, 2007, Christian Gordon Barker died, cancer-free, of complications of GVHD. Over 1000 people attended his funeral to celebrate his life and honor his legacy.
We believe that no child should have to suffer as much as Christian did, and no family should have to endure the pain and separation that seem to be unavoidable. This horrible situation has allowed us to meet some amazing families who also have kids with cancer. Some of them have lost their child, some are still fighting, and some are even in remission.
Additionally, we must honor the people who were there for us during the most horrible time of our lives. The staff at SCCA had become family during our 1.5 years with them. The nurses, doctors, PAs, Child Life, and staff made this time bearable. We had unfailing support from family, friends, school, Little League, church, and even strangers who cared about us, even if they did not know us.
While Christian was sick, my husband’s work had started a fundraiser, raising money for the Christian Barker Research Fund; we have continued that proud calling, although under a different name. Initially, we met top cancer researches and even found a pediatric cancer grant to fund. I trained for a half-marathon to raise even more funds for this grant. The Leukemia and Lymphoma Society eventually reached out to me to become an advocate for more Pediatric Cancer funding. Then, the American Cancer Society contacting me; then, CureSearch did as well. I go to the Senate and House offices, telling Christian’s story and pleading with them to give our kids a chance to survive. I always start with, “This is NOT about my family! I am here representing thousands of kids who are fighting or have fought cancer but are not cured because we do not have the funding to find cures. PLEASE give the kids a chance at life by giving the researchers more money to find cures.” More and more, I find myself involved in the pediatric cancer world of forming awareness and increasing funding for research. Everyone from LLS to PAC2 to CureSearch knows to call me to be an advocate. I am a California Team Leader for CureSearch. Even so, I know we can do more.
This brings me to Gold Rush Cure. Gold Rush works to raise awareness for childhood cancer. Additionally, we try to raise money for research, we try to create a nurturing environments for families going through the worst time of their lives, and we work to ensure that families know what resources are available to him. Our current projects, beside advocacy in Washington, D.C., and family mentoring, are Pot of Gold and marathons. These are ways anyone can help contribute to our cause. Help us advocate for our children so that a situation like Christian’s never has to happen again.