Hi everyone for our first post I wanted to give a little background on Hailey for those who don't know. This background story was taken from Hailey's Carepage.
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 & 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 & 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 & 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 & 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 & a true miracle from God.
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