Today is the day that, four years ago, my 11-year-old daughter was diagnosed with CML. We don't get back to the boards too often these days, but in the beginning they were a HUGE help.
Brief summary for those that don't know us: She was diagnosed with a WBC greater than 60,000, all other labs normal, no symptoms. Routine blood work for Girl Scout summer camp caught the disease in chronic phase. Started a week later on Gleevec 600 mg, and was increased to 800 mg after her PCR plateaued. It dropped significantly with the change in dose. Continues on 800 mg daily (400 mg in the AM, and 400 mg in the PM). PCR remains flat around 0.0060% to 00.0040%, but since her quality of life is fine, we are staying with Gleevec. We got some GREAT advice from another CML parent when she was first diagnosed, and she remains side effect free thanks to the supplements (Posture D, multivitamin, and antihistamine daily). She is now getting PCR tests every 6 months, but we can always go in sooner if we feel concerned (I can also have routine blood work drawn any time I am worried).
She is a 15-year-old sophomore in high school, learning to drive, and just became certified as an American Red Cross life guard. Still loves to ride her horse, and is on a very competitive swim team (usually swims 2 miles daily 5 days per week). Her times are not fast enough for state, probably because she has a chronic low RBC count (can't get enough oxygen into those lungs), but she does win events at local meets
Sometimes we forget about CML, but only until the next dose of medicine is due. It no longer rules our life, but is always there lurking in the background of my thoughts.
I thank God every day for Dr. Druker, and Trey, and Tedsay........they have been our greatest help and support.
Happy EASTER! Enjoy the day.
