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12/6/2016 Latest post:
3 hours ago
Emily was diagnosed with severe congenital neutropenia at about 18 months old. In a nut shell Emily's bone marrow wasn't producing the white blood cells to fight infections. Hand washing became the number one thing to do to avoid picking up a virus. She learned to stay away from people who were sick and take a daily subcutaneous injection GMCSF.
Taking a daily injection was part of her normal day.
On November 21 she had a yearly routine biopsy. We were informed that something had changed. We were advised to stop the injection.
She now has diagnosis of MDS myelodysplastic syndrome (preleukemia) or bone marrow failure.
In a blink of an eye we were knocked off our feet and quickly brought to speed of the treatment plan.
It also meant Emily could no longer attend school. She had to withdraw from attending rehearsals to an upcoming show. Without the injection she does not have the defenses necessary to keep herself from becoming ill. This was very difficult for Emily.
We were informed that first Emily would undergo a few rounds of chemo therapy while they search for a bone marrow match. Then proceed with a bone marrow transplant.
It all sounds so simple. A bone marrow transplant is a long process. Emily will spend 8-12 weeks(we're aiming for 8!) at Rady's Hospital during the transplant.
She is in the best spirits possible. She has faith and is not scared of the journey ahead.
Emily understands that with the transplant she will be cured and live a long, happy and exciting life.
She looks forward to participating in theatre and dance again.
Thank you all for your prayers, kind words, gestures and positive thoughts!
Thank you family, friends, teachers, classmates and everyone supporting us along this journey!