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.
Illustrated and Written By Sonya Keith
“Princess Maeve and the Dragon” is an illustrated children’s e-book drawn and conceived by Sonya to help the children in her life better understand cancer treatments after a friend was diagnosed. Sonya writes, “Our family friend, Makenzie, has just started chemo. Although at 26 she is not a child, her niece Maeve is two years old. I wrote this story for Darla (my 3 year old) and Maeve to explain why Makenzie will be feeling, looking, and maybe acting differently. I was hoping it would be a good introduction to a topic I’ve never had to cover with the kids. When my mom died of cancer the kids were all infants and I somehow escaped having to explain all of this.”
Using her phone and the Picsart app, Sonya created the story of a princess who loses her hair. Building these stories on her phone is a way that Sonya relaxes and deals with the stress of day-to-day life as a social worker and non-profit volunteer in Southern California. You can follow Sonya at her blog, Darla’s Mom.
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 Joan Kelley
Will was 16 when he was diagnosed with Acute Lymphoblastic Leukemia in June of 2009. It was the day of our 20th wedding anniversary. John and I were headed out to dinner when the pediatrician called. I thought Will had mono, but the doctor knew immediately from the blood work that he had leukemia and we needed to head down to Children’s Memorial Hospital in Chicago. My anniversary card to my husband, that would later be opened at the hospital, read “The last 20 years have been more than I could dream for. I can’t wait to see what the next 20 holds.”
Little did we know what the next 20 hours would hold and how that moment would forever mark all moments in time in our family.
After sitting in the ER for about five hours, they confirmed the leukemia diagnosis before sending us up to what would become our home away from home – the oncology floor. After the doctor left, I held my breath and my tears and asked Will what he was thinking – this athlete, artist, academic, friend loving kid. He said “I’m annoyed.” That’s it…annoyed.
This 3.5 year journey was going to put the brakes on the life of a teenager – socially (hard to be your friend when you don’t know if you can go to the party because you feel crummy all the time and really your priorities are just a bit different than your peers), academically (it’s hard to take AP Physics when you might only show up one day per week but he did it.), emotionally (mood swings due to drugs and just life) and well physically (he would lose 30 lb in the first month, nausea every day, no more hair, neuropathy and the boy who used to run could watch his little brother from a chair on the sidelines)
Annoyed doesn’t quite sum it up for me but that’s who Will was – you see Will loved life and he wasn’t going to let cancer take the core of who he was. It could have all those other things, it could change his reality, but it would not change who he was.
Fast forward ten months of weekly chemo, hospital stays, radiation, nausea, pills and pricks…and yes lots of annoyances! We felt like we had finally made it through the worst. But Will caught a series of infections his body couldn’t fight off and by the end of May we had tried everything and we had to say goodbye. Not exactly the order of things in your parenting – burying your 17 year old son, grieving with your husband and 14, 11, 8 year old children., realizing that the side effects of the very drugs that were saving his life had played into these infections. Annoyed doesn’t quite describe that, if you ask me.
Fast forward five years. Will has been gone four years now. Our oldest daughter is older than Will ever was. She has gone off to college. We are watching our other two boys grow up far too quickly. And yes we still grieve – that’s just how it is. You don’t get over it. You move through it. And you learn how to cope, you learn how to hold onto hope again, you learn how to trust God even deeper. But you still grieve and yes you are still “annoyed.”
You walk by their school pictures in the hall – three change out each year, Will’s is static and starting to look a bit faded. You still struggle and get anxious when meeting new people and they ask “so how many kids do you have?” I know the answer…but will they want to hear it? You still get mail for Will from colleges and credit cards. You still want to wake up and hope it was all a bad dream and have him walk around the corner…but it’s true…your son died.
And so because you belong to that group of ferociously courageous parents whose children have cancer – you do the hard thing and decide to not just be annoyed, but choose to live out your life remembering them well, making a difference for others – riding your bike, raising money and awareness, giving speeches, sitting with other moms who have lost their kids and crying with them because they need to tell the story to someone who gets it and sometimes doing crazy things like annual waterballoon fights with 100+ awesome people from your community because that’s how you want Will remembered – fun loving and generous and a little bit silly.
You see, cancer did not win. He didn’t lose his battle. Will is still a survivor in my book. His life has far outlived his 17 years. Cancer didn’t define it. His story’s just not over yet this side of heaven. But this “annoyance” in Will’s life has changed all of ours and then some. Grateful for the lives of all four of my kids and praying for a day when I sit with my grandkids telling them about “Uncle Will” and hopefully them not knowing what cancer is because it’s just not an annoyance for anyone anymore!
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If you would like to support Will’s family in a bike ride for the Leukemia and Lymphoma Society – Team in Training, please join them by riding the Blood Sweat and Tears Ride in Highland Park, Illinois on Sept 28th, 2014, praying for them, or donating by going HERE to help them make a difference for other children with cancer and remember their son Will.
More of Will’s Story can be found at his CaringBridge site HERE.
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.
Cade in February of 2011 after his 30 day induction therapy for leukemia.
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.
Cade and his older sister Codi taking a selfie in August 2014.
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Cade’s family has a Facebook page to update supporters. Cade Cares. Friend him! You can also follow his CaringBridge site HERE.
Mary Tyler Mom 