If you are google searching for the terms "infant leukemia" and have come to this page because your child has just been diagnosed with leukemia, my heart goes out to you. Our baby Hannah was diagnosed in August of 2012 with infant Acute Lymphoblastic Leukemia with the MLL-r translocation t(11;19). She was 3 months old at that time (105 days old), critically ill with a white cell count over a million, marrow was 94 percent blasts, peripheral blood was 99 percent blasts… and we all faced a terrifying, very uncertain future. She is currently doing well at nearly 20 months and she has nine more months of treatment if all goes well.
I know that in the beginning, I searched the internet looking for HOPE, research, stories of other babies with leukemia, and connections to other families who were fighting infant leukemia. If you are one of those families, I wrote this post for you. I especially have been looking for a way to let parents know about the support group on Facebook for Infant Leukemia parents.
The Infant Leukemia Support Group is a private group for parents/guardians of infants diagnosed with infant leukemia (Acute Lymphoblastic Leukemia, Acute Myeloid Leukemia, MLL-r, MLL-g, mixed lineage, T-Cell, and other rare forms) and it is a good place to connect with other families. Through this group, families are often more connected and informed about how other babies with infant leukemia are currently doing (including side effects and advice for dealing with day to day issues common to babies on treatment) than some oncology groups, who may only have one baby on an infant leukemia protocol. With only 200 babies diagnosed each year with all these types of leukemia counted together, it can be hard to find each other.
The Infant Leukemia Support Group page can be found here: https://www.facebook.com/groups/infantleukemia/
Hannah's ongoing story can be found on her CaringBridge site which is http://www.caringbridge.org/visit/hannahireneshull. I update there frequently. Hannah's home hospital is Minneapolis Children's and she is on protocol COG AALL0631. Her current treatment plan is "chemo only" and does not include plans for a stem cell transplant except in case of relapse.
Please feel free to contact us as well.
Blessings to you!
Sara (and Kevin) Shull
This picture was taken a year after diagnosis, August 18, 2013 - a year into treatment.
Baby Hannah on August 15, 2012. We were told there was a good chance she would not survive the first 48 hours. There is hope!