Hailey K. - Quilt Finished in 2008

Born: June 6, 2006

Illness: Infant ALL

Hailey K.'s Story

Written by Hailey's mom in 2008

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. They 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 Petichae (pinpoint bruising) and running low grade fevers, after several trips to the pediatrician and bieng misdiagnosed with a typical virus Hailey was sent to the emergency room at Tarzana Hospital and was then rushed to Childrens Hospital Los Angeles on October 4th 2006. She was in critical condition and was not expected to make it through the night, she 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 in patient and countless days in the day

hospital. She was an extremely sick baby and had several infections and fevers along the way, siezures and many many surgeries and spinal taps.  Afer four months and still on chemo she relapsed in Feburary 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 recieved a mismatched Umbilical cord blood transplant on May 30th 2007 at Childrens Hospital Los Angeles. Afer an intense conditioning

regimen she recieved 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.

She has developed Acute and Chronic Graft versus host disease (where the donor cells

attack her cells) do to the mismatched transplant. She must stay at home indoors and avoid the sun. She also suffered from VOD (venous occlusive disorder) but she is free from it now. She takes several medications daily and is on high dose steroids and anti-rejection drugs. She is also recieving in home therapy, physical, Occupational, Feeding and speech four to five times a week and has to go back to Childrens 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. She has 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 recieved. She still has issues eating but she is quite happy most of the time in spite of everything she has been through and has recently learned how to walk. She is a very strong baby girl and she is our hero and a true miracle from God.