I received the below via email from a woman who heads up Team in Training...a running program that I signed up for long ago to train for races that benefit Lymphoma and blood diseases. While I do not know the family personally, I feel the information below is very important (so many people I did not know helped us and it was the best feeling EVER) and I'd like to pass it along if anyone can donate blood or platelets to CHLA. Thanks! Dayla
HERE'S THE INFORMATION...
Hailey is day +47 post stem-cell transplant and seems to be doing well. Her counts are finally showing positive numbers, June 29th her labs showed .23. A tremendous progress from the low negative counts that are normal right after the transplant. I spoke with Maria again today, and I share with you the best news ever....her new stems cells are grafting - Hooray! On the opposing side however, she has also developed Veno-occlusive Disease (VOD), which is a common complication for transplant patients.
For those unfamiliar, it is where a blockage develops in small veins leading to the liver, also not unusual after transplant. The blockage affects the liver's blood flow and creates a buildup of antibodies and eventually can damage her liver cells. The possibility of permanent liver damage and failure is a possibility but she is really persevering though all of this so bravely. Between the steroids, the VOD medication and the 12 dozen other drugs she is on, she has swelled up a bit and now fits into her 12-18 month baby clothes. When she checked in a month ago, she was still wearing 6-9 months.
I went for a visit a few weeks ago and she had the most radiant smile; brighter than the sunshine outside. She was laughing and playing and amazingly never fussing with all of the cords and her port. She is one very strong-willed, persistent, well-tempered baby for all that she is enduring. She will remain in CHLA for probably about 3 more months. Mom & Dad are doing very well under the circumstances. I think the thing that affects all of them the most is that Hailey's twin brother, Ryan cannot go to the hospital to see her. Ryan truly is Hailey's best medicine. Before going into isolation, whenever Ryan would come to visit, regardless how Hailey was feeling, Ryan helped Hailey illuminate the room with her joy to see him.
Hailey is still in DESPERATE need of platelets & blood. All blood banks are at a critical low and so is the hospital. They are even having to stretch the limits by skipping days to give her platelets because there just aren't enough - she is bruising as a result. Her lil' body is literally drinking up the platelets and she is still needing O- blood to help her recover.
Blood & Platelet donations for Hailey's direct benefit can only be completed at Children's Hospital Los Angeles; where Hailey is receiving her treatment. They offer Saturday appointments. When making and showing up for your appointment, please specifically tell the coordinator the following to ensure exclusive credit is made to Hailey's blood bank account:
You are making a "Directed Donation" for Hailey Joy Kent and her date of birth is 6-6-06.
Donors MUST be O- for blood only. However, for platelets, anyone of any blood type can donate to her. People that are CMV- are strongly encouraged to donate platelets because she cannot receive CMV+ types. Please contact Children's Hospital with any questions regarding donations of blood or platelets.
Children's Hospital Blood Donor Center
4650 Sunset Blvd., #131
Los Angeles, CA 90027-6062
BloodDonor2@chla.usc.edu
(323) 669-2441