My name is Stephanie and here is the story about my heroic son Drew. My husband Michael and I knew that immediately after we were married we wanted to try and have a baby. Michael already had a beautiful baby girl and we wanted Kiersten to have a sibling. 5 years later and a few fertility treatments under our belt, Drew was miraculously conceived naturally.
A couple years after Drew was born and after another second trimester miscarriage some genetic testing revealed that I had a genetic condition that gives any past, current or future pregnancy a 90% risk of miscarriage. While still mourning the agony of losing our baby boy we still let it sink in how blessed we were to have Drew. What a miracle that little boy is.
Here we are 5 years later with much better odds but heartbreaking news. Drew was diagnosed with Pre B Standard Risk acute lymphoblastic leukemia. Also known as ALL the most common form in Children. The prognosis is very positive with here we go again a 90% chance of CURE.
Several weeks after our diagnosis we learned that Drew’s Genetic testing revealed he had a cryptic rearrangement of CRLF2 with a fusion of PYR28. Those words meant nothing to me but I could tell by the look on Drew’s oncologist face that it was not good. He then told me Drew was no longer standard risk but was now very high risk. His oncologist also admitted this was a rare finding and we would have to conduct his own research. This is when I turned to LLS. Within days we were armed with clinical trial information and connections were being made to the top Leukemia Doctors around the country. The team was not only efficient and empathetic but would call me for no other reason than to ask how Drew was doing. The information I was given gave me confidence to advocate for my son and ensure he had a treatment plan that would give Drew the best possible prognosis. For that I am eternally grateful.
The VHR treatment plan is aggressive. He has had to endure bone marrow biopsies, spinal taps. He has received several doses of chemo placed directly in the spine and a port placed in his chest He will be in treatment for 3 years and unable return to school for at least 9 months. Chemo is wrought with side effects and his immune system will be severely compromised and he will have side effects to deal with for the rest of his life. He is in the best care with the best possible people around us but it is still scary
We are incredibly proud of our brave boy and will continue to share updates here. We thank you for your support prayers and love for our little miracle.