Diagnosis: Down Syndrome, Leukemia (ALL), Philadelphia Chromosome- very rare
On August 18th 2016, our little Lizzy Grace expressed that her leg was hurting and we started to see a visible limp in her walk. We scheduled an appointment with our pediatrician and after t wo visits decided to admit her into the ER at Children's Medical in Plano, TX on August 20, 2016. At Children's, blood test and x-rays were performed. The x-rays came back inconclusive. However, the blood test revealed abnormalities that when combined with her leg pain caused concerns for something much more serious. After a more detailed examination of the blood test, it was recommended that we immediately transfer Lizzy Grace to Children's Medical in downtown Dallas by ambulance. We knew this was serious. When we arrived to Children's Medical in downtown Dallas on August 20, 2016 at 4pm, we were greeted by 6 doctors and interns in our room. They broke the news to us that our little 4-year-old girl was very sick and had been diagnosed with Leukemia. Our hearts sank as we were hit with this "rogue wave". They were unaware of the type of Leukemia and they would not be able to report this to us until Monday, August 22, 2016.
On Monday, it was confirmed that she has pre B, Acute Lymphocytic (Lymphoblastic) Leukemia (ALL). Acute lymphocytic leukemia (ALL) is a fast-growing cancer of lymphocyte-forming cells called lymphoblasts. After two independent test, it was confirmed that she also had the Philadelphia Chromosome. The Philadelphia Chromosome is a specific genetic abnormality in chromosome 22 of the leukemia cancer cell. Because of the Philadelphia Chromosome, she must take Gleevec daily throughout the next few years. Gleevec, also known as Imatinib, is a chemotherapy medications used to treat this type of cancer. With her Down Syndrome, this is a rare case of leukemia with very limited cases that have been reported.
On August 23rd, Lizzy had surgery to implant a port into her chest that will be utilized to administer the chemotherapy. While under sedation, they performed a bone marrow biopsy and spinal tap that included a dose of her first chemotherapy. Since her diagnosis, she has completed the Induction phase of therapy which lasted 30 days. We are currently working through the many phases of consolidation. My wife Angela and I have been taking turns at the hospital driving from McKinney, TX either to the downtown location or the Plano location. Sometime in April or May this year she will be downtown for approximately 45-60 days.
Through it all, Lizzy has been able to keep her sweet smile and battle through the really tough days while taking chemotherapy. She loves the time she is able to spend at home playing with her brother and sister.
Present Condition: Good. April or May will be hospitalized for 60 days for more chemotherapy. Daily meds: Synthroid, Gleevac(chemo), NG tube, Zofran, special diet. She has a port for her medications along with NG tube.
Day in the life: Lizzy loves anything Disney, Blues Clues, playing kitchen, games on her ipad