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.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes, just a little.
Walk: Yes.
Read: No.
Use hands: Yes.
Siblings:
half-sister Heather, old
twin brother Ryan, old
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.
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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