Birth: June 6th, 2006
Main Diagnosis: Infant Acute Lymphoblastic Leukemia
Hailey's Story written by mom Maria
Hailey was born on June 6th, 2006, prematurely along with her twin brother Ryan. They were born at 33 weeks and 5 days. They both required oxygen and needed to learn how to eat and spent 15 days in the NICU.They both came home and seemed to be progressing nicely but shortly after, Hailey began having problems with her health. She began vomiting and getting Petechiae (pinpoint bruising) and running low grade fevers. After several trips to the pediatrician and being misdiagnosed with a typical virus, Hailey was sent to the emergency room at Tarzana Hospital and was then rushed to Children's Hospital in Los Angeles on October 4th 2006.She was in critical condition and was diagnosed with a rare aggressive form of Leukemia (Infant ALL with the MLL gene). She started an aggressive high dose chemo regimen the next day and achieved remission on day 28. She has spent a total of ten months of her life as an inpatient.Hailey was an extremely sick baby and had several infections and fevers along the way, seizures and many many surgeries and spinal taps. After four months and still on chemo, she relapsed in February 2007. She was started on another even higher dose of chemo to get her into a temporary remission so a bone marrow transplant could be performed. During this time she had several setbacks with infections but was eventually back into remission.Unfortunately, her brother Ryan was not a close enough match so the search began for a marrow donor. There were no perfect matches on the National Marrow Donor Registry so we held several marrow drives but Hailey was too sick to wait. She received a mismatched umbilical cord blood transplant on May 30th 2007 at Children's Hospital in Los Angeles. After an intense conditioning regimen, she received her transplant and spent another four months in the bone marrow unit. She was extremely sick but got to come home on September 4th, 2007 and she is still at home under strict house isolation along with her twin brother Ryan who is also isolated so that he wont bring any illnesses home to Hailey.Hailey has developed Acute and Chronic Graft Versus Host Disease (where the donor cells attack her cells) due to the mismatched transplant. She must stay at home indoors and avoid the sun. She also suffered from VOD (Veno-Occlusive Disorder) but she is free from it now.She takes several medications daily and is on high dose steroids She is receiving home therapy, physical, occupational, feeding and speech, four to five times a week and has to go back to Children's Hospital weekly. Her risk of relapse is very high but we continue to pray this will never happen (this would require another transplant which is usually not very successful).Hailey recently lost her hair again and it is believed it may be due to the Graft Versus Host Disease, and she is having Thyroid problems due to the chemo she received. She still has issues eating but she is quite happy most of the time in spite of everything she has been through. Hailey recently learned how to walk. She is a very strong baby girl and she is our hero.
(Story and Interests were last updated June, 2008)
Disabilities: (If child has any physical limitations)none
Child's Interests:Hailey is homebound but loves playing with toys, loves to watch Tigger and Pooh, Mickey Mouse clubhouse, Handy Manny, Dora and Disney movies. She loves music as well, and having books read to her.
twin brother Ryan,2
Sibling's Interests: Ryan loves most of the things Hailey loves (they are twins) and he also loves trucks and playing little tykes basketball, and also driving our dog Crissy crazy.
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