Less than a month after being diagnosed with a rare and deadly form of Leukemia, these were the words my beautiful daughter Essence uttered to me. I remember marveling at her strength then, and continue to do so today as she preps for yet another round (her third) of chemotherapy.
I share my story, my daughter’s story, because as Essence said, maybe it will be a blessing to someone else.
Essence was diagnosed with AML, a rare form of cancer found in children on January 15 of this year. She had gone to the emergency room on the 12th, where blood was drawn and we were told of two possible outcomes: Leukemia, or something called Aplastic Anemia.
We were actually told all sorts of things which made the final diagnosis quite a bit harder to take. One emergency room Pediatric Hematologist actually told me he didn’t think Essence had Leukemia. Another doctor told me Leukemia had over a 90% cure rate. A statistic that filled me with all kinds of hope. Unfortunately, that doctor was talking about ALL, the most common and easily treated form of Leukemia. So you can imagine my shock and horror when my daughter’s diagnosis was given to us and included words like “rare,” hard to treat,” “acute,” and “40-45% survival rate.”
I was devastated. My daughter was devastated. Her first reaction was to decline chemotherapy. She was 17 at the time. Doctor’s told her she’d probably be dead within 6 months. My daughter’s next reaction was pure hurt and anger. “Why me?” she said. She had so many plans. This was her final year of high school. She was looking forward to her senior trip, prom and graduation. As a matter of fact, she’d worked the previous summer to pay her own senior dues. She felt abandoned and wondered why God would allow this to happen to her.
I took the news just as hard, but wanted to channel all my anger into finding answers. That started with a phone call to my daughter’s Pediatrician. Essence had gone to her PCP more than once complaining of being tired all the time and having a headache that wouldn’t go away and nose bleeds. She was told she probably had the flu, even though she’d recently been vaccinated against it (My thoughts on that another time). My daughter had her 2014 yearly physical in December. They drew blood. Blood. My daughter has Leukemia. A blood disease. How do they draw blood and not see that? I wanted answers.
My daughter’s Pediatrician didn’t have many. Her response to me was “Cancer is a rare disease, especially in children.” She said Essence’s symptoms would not have led most doctor’s to think cancer. Ok. Fair enough. “So why wasn’t her Leukemia spotted in December when she had her physical?” I asked. Her response: “They don’t test for it.”
I knew right then and there I had to do something. I didn’t know what, but I knew I didn’t want another parent or child to go through what me and my daughter were going through. By the way, the night before my daughter went to the emergency room she Googled her symptoms and walked into my room with her laptop and said “Mommy, I think I have cancer.” So, whereas her Pediatrician didn’t think much of her symptoms, by the way, I don’t blame her, I think she did her best for my daughter, a simple internet search proved to be a lifesaver. One doctor told us Essence probably wouldn’t have lasted much longer without care.
Left untreated, AML kills within a matter of months. Time is of the essence. Diagnosis and treatment, which usually includes, chemotherapy, blood transfusions and bone marrow transplants have a better chance of working when the disease is in its earliest stages. So a month, just a month of not being properly diagnosed can mean the difference between life and death.
I have since spoken to lots of parents like myself. Parents who took their children to see their Pediatrician or emergency rooms, only to be sent away and told it’s nothing to worry about. Like my daughter, no one took her seriously until she was almost on death’s door. The feeling of being tired progressed to non-stop headaches, which progressed to nose bleeds and eventual fainting. Those precious weeks of not being properly diagnosed can can never be gotten back.
Push your children’s doctors. Push them to perform tests they may not want to perform. Advocate for your children. Hard. Know that those yearly physicals don’t test for a multitude of childhood diseases. Ask for those rare tests. Get a second and third opinion. But most importantly, if there is a hospital in your area that specializes in treating children, go there. The emergency room my daughter went to knew they didn’t have the means to give her the care she needed, so they called in those who did.
Children’s hospitals tend to take your children’s complaints seriously. They go the extra mile, particularly with babies and young children who can’t voice what’s ailing them. Just writing this my heart aches for the babies I have seen with cancer. Babies who cried endlessly and parents who didn’t know what to do. Parents who were told their babies were just colicky.
I am thankful for the wonderful care my daughter has received via one of the best children’s hospitals in the country. As it stands today, we are hopeful. My daughter will eventually need a bone marrow transplant and thank God both her brother’s are a half match. I now know firsthand why it is so important for more African Americans to become bone marrow donors. Were her brothers not half matches, I don’t know what we’d do, as there are no other matches for my daughter in the entire country.
If you haven’t, please visit Be the Match and become a donor. You could be the difference between life and death for an African American child suffering from Leukemia.