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 Laurie Johnson
Your entire life is made up of moments. Not many moments were that significant before our son was diagnosed with cancer in November 2011, but now every moment counts.
Connor had a week of headaches before I took him to the eye doctor. He had just turned four and there is a history of migraines and bad eye sight on both sides of the family, so I thought it was just a routine check up.
Moment one was when our pediatrician called us as we were driving home that night (after hours) to tell us that Connor would have an MRI the next morning due to pressure seen on his optic nerves. We were nervous but the words “brain tumor” didn’t cross my mind. Cancer is not common on either side of our families so it didn’t immediately occur to us.
The next morning Connor and I ran into a neighbor at the store. I told her about the MRI and I remember that he was jumping and being silly and I said, “Look at him. I’m sure everything is fine.” My husband met us at the hospital for the MRI. At that point I think I was most worried about the sedation, but Connor went to sleep easily and my husband and I went to the cafeteria where I ran into the doctor that delivered Connor. I said why we were there and again said, “I’m sure everything is fine.” Call it ignorance, call it denial, call it what you want but I was not that concerned.
Moment two is when my husband and I were taken down a hall by a nurse. I didn’t know the hospital well and assumed we were being brought back to our son. But then we turned the corner to a windowless, empty room where our pediatrician was waiting. I instantly crumbled. I knew it was bad. She told us that a large mass had been found in his brain. The size of a baseball.
The next few days are a blur of many moments: the ambulance ride to Children’s Memorial where Connor was thrilled to “get to” ride in an ambulance with the lights and sirens on; the doctor showing us the image of this horrible mass taking over our son’s brain; then telling us that he may not survive surgery or may wake up not being able to walk or talk; then postponing the surgery to give the surgeon time to figure out how to tackle the monster without killing our son. In all of those moments we were surrounded by amazing friends and family but I just remember lots of tears and feeling numb.
Moment three is when Connor woke up from surgery and was able to count to ten and move without any problem. He smiled and we cried. What a miracle. But that joy was short lived when we were told it was a very rare cancer called AT/RT (Atypical Teratoid/Rhabdoid Tumor) that had spread all throughout his brain and spine and they could only give him a 20-30% chance of being alive in two years. I remember when I asked for the odds, I was thinking that only a 75% chance would be terrible to hear. Nothing could prepare us for the 20%-30%. And that was only for two years. They didn’t have statistics on a five year survival rate.
We were discharged that day. Connor was recovering amazingly fast. Within days we had to stop him from running around the house with his little brother. How could my little boy have cancer???
Treatment options varied but all consisted of 6 weeks of full brain and spine radiation (with sedation each day) and lots of chemo. Poison. We were told that radiating a four year old brain would lead to a 30-40 point drop in IQ. Not to mention the damage that the high dose chemo would do to his mind and body. We mourned the loss of our son that was going to have straight A’s and play varsity sports and get full scholarships to any college of his choice.
Ok, maybe that was a little optimistic, but to hear that the only way to save your child’s life is to cause permanent damage and that graduating high school would be difficult was devastating. But at least he had the chance to fight.
Ultimately we chose to go to St. Jude for treatment. It truly is an amazing place and Connor was thrilled to go there every day to play and be spoiled, but I also remember a whirlwind of too many kids being sick. Too many exhausted parents fighting for their kids’ lives. Too many scars and needles and medicine and appointments.
We did our best to be positive for him but in reality, Connor carried us those days. His smile, spirit and perseverance got us through. Then after his last round of chemo, we had the most glorious moment of hearing the words “No Evidence of Disease.” It took all of treatment to get rid of the cancer, but it was gone. I was so in shock that I almost didn’t believe it. It had been eight months of fighting to finally have clear scans.
Connor is now three years cancer free! Right before each scan, there is that fearful moment of “what if it comes back,” but that subsides with each scan. And now we have a different perspective.
This doesn’t mean that we are perfect now and never get frustrated at the little things (because we do), but hope, thankfulness and perspective are our focus now. It helps us not dwell on the after-treatment side effects because Connor did not escape unscathed. Radiation and chemo did their damage. He has a shunt, he has permanent hair loss, he takes multiple pills a day, he receives daily growth hormone shots, he has hearing loss, he is behind in school and he just had cataracts removed. But he is here.
Conor is happy and has the most genuine spirit and smile that can lift up anyone. We are so thankful for the extra moments we have been given. Like his first day of kindergarten, first grade and second grade, his first baseball game, meeting his baby sister, winning the Pinewood Derby race, playing with his brother and sister (and fighting with them as well). Not everyone gets so many moments, whether due to cancer or an accident. We know we are the lucky ones and we are so thankful for the love and hope we are filled with each moment of every day.
Filed under: Childhood Cancer Stories 2015