September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Deann Perkins
In February 2008 our world as we knew it was forever changed as our son Cade was born with Down Syndrome. At 44 years of age, it was something that was definitely a possibility with an unexpected pregnancy, but the high risk pregnancy testing pointed to a healthy, “normal” baby.
After Cade’s birth, I can remember crying and thinking of all the things he would not be able to do cognitively, and how he wouldn’t be like my two older children, who love and were deeply involved in sports. I obviously had no clue at the time that just three short years later a diagnosis of Down Syndrome would mean absolutely nothing to me and that life itself was all that would matter.
In remembering the events of January 2011, Cade’s diagnosis of Pre B Acute Lymphoblastic Leukemia drove home the point that many of our friends and family had been trying to communicate since Cade’s birth. All children have special needs, heck some of them even need glasses, but life is the most precious gift we are all given.
Shortly after Cade’s birth, one of his doctors’s droned on about the many health issues a child with Down Syndrome can face. I can still remember how the word “leukemia” stuck out that day. However, I filed that way in the back of my mind as we journeyed with Cade through a VSD repair in January of 2009. In true “Cade fashion,” he sailed through open heart surgery and was released only six days after his surgery.
The rest of 2009 and 2010 were spent trying to get Cade to meet developmental milestones as he worked with Physical, Speech and Occupational therapists. While the cognitive wheels were definitely spinning very fast and Cade was learning things at a rapid rate, including pushing a chair to the cabinet and crawling up on the chair to fill the sugar canister with macaroni and hamburger meat, he was having a difficult time with physical development. His heart surgery had left his torso weak, and it hindered his ability to walk. Eventually, all the therapy came to fruition, and in November of 2010 Cade began to walk. We were so thrilled.
A short two months later Cade would lose his recently acquired skill.
On January 8, 2011, I took Cade to the doctor because he was running a low grade temperature and just seemed as though he was in pain. He was diagnosed with anemia after his blood work and prescribed iron. Our experienced and trusted pediatrician however told me to bring Cade back in a few days if he wasn’t feeling better. On Tuesday night after coaching our high school girls’ basketball game, my terrified and scared daughter brought Cade to me and tearfully told me that Cade refused to put his legs down and walk. Her face filled my heart with fear. What if there was something serious wrong with Cade? Something that would be hard to fix or worse yet, couldn’t be fixed?
After a bath, Cade got chilled and began to shake; I squashed my fears, got him warmed up and put him to bed thinking that in the morning he would put his legs down and walk. As Wednesday dawned, I hoped and prayed that Cade would be better and back to his sunny, mischievous self. He was not, and my heart sunk. In the back of my mind I remembered the words of Cade’s first doctor, leukemia. I called our trusted pediatrician, and he wanted to see Cade again as quickly as possible that morning. After seeing that Cade could no longer walk and refused to put any weight on his legs, his doctor quickly sent us to the hospital for more extensive blood work and a chest x-ray.
At 6 p.m., after basketball practice, my phone rang. When I saw that it was Cade’s pediatrician, I knew it would not be good news. Cade’s doctor told me that the preliminary blood work showed that Cade had leukemia and we would need to be at Cook Children’s Hospital in Fort Worth at 10 a.m. the next morning. We would need to be prepared to stay for an extended period of time. I could not breathe or even think a thought other than, “I want Cade to survive.” At that moment, the word Down Syndrome became nothing. It would never matter to me again what Cade could or could not do.
Cade’s cancer journey has the happy ending that all parents of a child with cancer hope, pray, imagine and plead will be the ending for their child. Once again, in true “Cade fashion,” he sailed through a 3 year treatment plan with very few hospitalizations except for a couple of neutropenic pneumonias, and a GI bleed due to the horrid steroids used in treatment. But, in true “Cade fashion” during the maintenance phase of his treatment, in February 2013, he unbuckled himself from his car seat, opened the pickup door and fell from a moving vehicle resulting in a helicopter ride to Cook Children’s Hospital only to be home a day and a half later with some severe road rash.
As a result of this fall, unbeknownst to us, the line to Cade’s port suffered damage. A month later, in March of 2013, as he lay in my arms at 4 a.m. in the hospital for a suspected pneumonia, he suffered respiratory arrest, was intubated and spent 4 days in the ICU as his port had leaked IV fluids and a blood transfusion into his chest cavity. Cade had literally drowned from the fluids he was receiving for his benefit. Of course, he was home after 6 days in the hospital and hunting Easter eggs. Today is he a happy and extremely active 6 year old that keeps us on our toes.
As we were thrown into this unfamiliar world of childhood cancer and it became our norm, we have met many families that we have prayed for, rejoiced with, cried with, mourned with, and read their stories. The most important factor that binds us all together is that we seek life for our child. We accept that it may be an altered life from the side effects of adult drugs that are used for children and many other medical emergencies caused by the poison to treat the Cancer Monster in our children. At one point in Cade’s journey, I was told that children with Down Syndrome often suffer more side effects from the chemotherapy because they have an extra chromosome to metabolize the drugs. I was also told that children with Down Syndrome have a better survival rate because the extra chromosome allows them to get more of the paradoxical life-saving poison.
Seriously, Cade has what? Does it matter? No, and to say that it did, would be a total travesty to the precious angels who have lost their battle. No, a full and happy life that is lived to the fullest each day is what matters, and what we should seek for all of our special children.
Filed under: Childhood Cancer Stories 2014