Hannah's leukemia has been in remission since her treatment in 2012 to 2014 and now, more than ten years off treatment, we consider her cancer free although she continues to be at higher risk of a new treatment related leukemia due to the chemotherapy she received. After completing two years of intense chemotherapy treatment in 2014, she required several years of physical, occupational, feeding, and speech therapy to catch up on developmental milestones. Now she is a bright, happy 11-year-old who does not remember her years of fighting leukemia. Her very positive outcome in terms of survival as well as currently having only minor lasting effects of treatment puts her in the minority for infant leukemia survivors. She continues to be monitored for lifelong effects of chemo.
The current treatment path for Infant Leukemia is brutal, and not very successful. Survival prognosis for infants with ALL continues to be less than 50 percent, with many survivors facing life-long challenges due to treatment.
We need BETTER, SAFER CURES for infants and children with cancer.
We continue to support St. Baldricks in their fight for research money to improve the rates of survival and quality of life of these precious kids.
RESEARCH IS HOPE!
#GiveKidsALifetime
Thank you from Hannah's Family!
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Are you interested in Hannah's Leukemia Story? Did you know that very young babies can get leukemia? We didn't. Here is Hannah's story, originally written in January 2014 while she was 20 months old and still in treatment.
On August 15, 2012, our sweet baby Hannah, just three-months-old, was diagnosed with Infant Acute Lymphoblastic Leukemia with the MLL gene rearranged. At 20 months of age, Hannah has spent over 190 days in the hospital on both the oncology floor and in intensive care, dozens of days in the clinic, and has received 15 different types of intravenous, spinal, and oral chemotherapy. She will continue to receive chemo daily until she is off treatment in August of 2014.
She is currently doing well, in remission, as treatment continues. Her ten older brothers and sisters are very happy that she is able to spend most of this second year of her protocol at home! Despite fighting leukemia for 85 percent of her life, including many months of intense treatment and often miserable side effects, Hannah has grown into a cheerful, delightful toddler. With help from family and friends; our prayer team; physical, occupational, music, and speech therapists; and the dedicated and amazing oncology team at Minneapolis Children's; Hannah is catching up on developmental milestones and we are full of sober hope for her future.
Infant Acute Lymphoblastic Leukemia with MLL-r (ALL diagnosed before the first birthday, characterized by MLL gene chromosomal rearrangements) has one of the lowest survival rates of all pediatric leukemias, with historic relapse-free survival rates into the late-1990's of approximately zero to 20 percent. Very young babies with very high white blood cell counts at diagnosis, like Hannah, face the worst prognosis. Hannah is enrolled in a Children's Oncology Group study which is based upon previous protocols developed for Infant ALL (MLL-r) in the past fifteen years with relapse-free survival rates of approximately 8 to 43 percent. Hannah is currently in the control group of a study testing a targeted drug called Lestaurtinib to try to advance cure rates in infants with ALL (MLL-r).
Unfortunately, because Lestaurtinib has not shown promise in the larger and more profitable adult cancer market, no more of this drug is being manufactured and the study has had to make do with stockpiled supply, and a more limited scope. It is uncertain if this drug will be available in the future, even if the lives of babies are saved through its use.
More research dollars, novel therapies, and financial support for orphan drugs such as Lestaurtinib are needed to find a cure for all of these beautiful babies!
Our family is personally thankful to St. Baldrick's for their commitment to funding this sort of life saving research and development.
Thank you for supporting Hannah and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent, and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
To learn more about Hannah, and for current updates and prayer requests, please visit her Caringbridge journal at:
www.caringbridge.org/visit/hannahireneshull
We invite you to fall in love with her, and cheer her on as her fight continues.
