14 Months Old at Diagnosis
Janiyah was born with Hemoglobin C disease, a benign chronic anemic condition that required monthly monitoring of iron levels. We were referred to Children’s Hematology and Oncology Medical Group by her pediatrician’s office for treatment. Eleven months later, Janiyah was doing well with a prognosis of living a perfectly normal life with Hemoglobin C disease, when she broke out with an awful rash. I showed her hematologist and his team when we went in for our July appointment. When her complete blood count (CBC) came back with elevated white blood cells, the rash and her recent cold were thought to be the causes, but we were asked to come back for a follow-up in two weeks just to be sure.
On our return visit, the counts were even higher, so we were sent to an outside lab for more extensive testing. Three days later, we were given the devastating news that Janiyah had acute lymphoblastic leukemia (ALL). My husband and I were in complete shock and devastated! We never expected the words “leukemia,” “cancer,” or “chemotherapy” to come out of our doctor’s mouth. I could not speak for some time. Those words literally took my breath away.
We were immediately sent to the hospital and admitted for fourteen days. Janiyah had her very first lumbar puncture with intrathecal chemotherapy and bone marrow aspiration the next day. Over the next two years, Janiyah received IV chemotherapy, intrathecal chemotherapy, intramuscular chemotherapy, steroid therapy, and chemotherapy in pill form. Janiyah experienced many complications, including two bouts of shingles, a severe allergic reaction to one of her chemotherapy medications, pneumonia, fevers and asthma, as well as a malfunctioning port that had to be removed and replaced.
It was a difficult journey, but I am pleased to share that Janiyah went into remission on September 12, 2012. She completed her two year treatment regimen on November 20, 2014. She has a great prognosis and has blossomed into an amazingly bright and beautiful three year-old girl. Janiyah absolutely loves princesses, baby dolls, and stuffed animals. Her favorite movie/iPad game is “Despicable Me and the Minions,” and her favorite TV shows are “Sophia the First” and “Doc McStuffins” on Disney Junior.
Childhood cancer has changed our family forever. We will never be a “normal” family again. Janiyah will have to follow up with yearly check-ups for the rest of her life. We don’t know what the long-term effects of chemotherapy are yet, if any. As a mom – every sniffle, every cough, every fever – makes me worried and causes my heart skip a beat. Being on the front lines of treatment with my daughter, I’ve seen more than any mother would ever wish to see, and Janiyah has endured more than any adult should ever have to – let alone a three year-old child.
However, through all of these trials, our family has been able to see the blessings as well. We have been fortunate in the fact that these strains have actually brought us closer. My husband’s employer and co-workers stepped in with support, which allowed him to continue to work and still have time off during emergencies without fear of losing his job. Also, my former co-workers held toy collections, fundraisers and threw a huge Halloween benefit party in Janiyah’s honor. We have had many people, some strangers, offer support, cheer us on, and provide shoulders to lean on.
Because of all the support we were given, we wanted to give back. Two years ago, we decided to participate in our first CureSearch Walk in West Palm Beach and created the “Baby J’s Fight Club.” We have “Fight Club Members” all across the United States and a few overseas in Turkey and England. This year, we were top fundraising team at the 2014 West Palm Beach Walk!
We are very appreciative of CureSearch, especially the information and resources available online. CureSearch’s website was very helpful to me, and I plan to continue supporting their efforts to invest in research to help other families. No parent should have to hear the words, “your child has cancer,” or “there is no treatment,” or “there is nothing more that we can do for you.” I believe that one day, the number of children diagnosed and the number of children that die each day will be drastically reduced by CureSearch efforts.
Mother of Janiyah
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