For Simi Valley couple whose infant underwent stem cell transplant, it's a waiting game

VenturaCountyStar ^ | 07.26.07 | Tom Kisken

[Coleus]

Nearly two months after undergoing a transplant designed to infuse her body with healthy blood and defeat leukemia, a 13-month-old Simi Valley girl remains in isolation in a Los Angeles hospital. Hailey Joy Kent, who received stem cells from a donor's umbilical cord on May 30, is still on a battery of medications as doctors monitor a blood count that fluctuates day to day. She's playing with her favorite rattles and seems mostly happy but faces a long list of challenges, like relearning how to eat.

"Considering what she's been through so far, she's doing all right," said Maria Kent, Hailey's mother, who all but lives at Childrens Hospital Los Angeles. "You just have to wait every step of the way. The threat of relapse is going to be there for a long time. You don't even know." Maria and Rick Kent went through nine miscarriages before a surrogate carried the embryos that on June 6, 2006, produced Hailey Joy and her healthy twin brother, Ryan. The Kents also have an older daughter Heather, who is 21.

When she was 3 months old, Hailey was diagnosed with an unusual, aggressive disease called acute lymphoblastic leukemia. Several months of chemotherapy didn't stop the disease. Hailey was admitted May 21 to Childrens Hospital. She was given a final, nearly lethal course of chemotherapy aimed at eradicating the diseased blood cells. The stem cells were then transplanted into Hailey to replace the bad cells with healthy blood. The healthy cells are growing and now about 94 percent of Hailey's blood cells can be linked to the transplant, Maria Kent said, adding that the family hopes that medication triggers more cell growth and boosts that number to 100 percent.

The biggest fear is the leukemia will come back. "Her (blood) counts go up and down," said Rick Kent, noting the pre-transplant chemotherapy meant she was fed intravenously. "Now the process is trying to get her to eat anything, which is a battle." The Kents also worry about the risk of infection posed by Hailey's weakened immune system. But Dr. Neena Kapoor, director of the clinical bone marrow transplant program at Childrens Hospital, says she's encouraged because there is no sign of cancer and the new stem cells are producing healthy blood.

"Her nucleuses are growing beautifully," she said. "Right now, things are headed in the right direction." Hailey is still in an isolated room but can be visited by family. She and twin Ryan have been together once since the transplant, celebrating their first birthday together at Hailey's hospital. She takes steroids that can make her grumpy. But she smiles often and seems happy, though a little bored.

"She's in good spirits," said Rick Kent. "She's my hero. It's amazing everything that little girl has gone through." Her family is trying to deal with the stress. Her mother spends as much time as possible at the hospital but still tries to get back to Simi Valley to see Ryan. Rick, a construction manager at Universal Studios Hollywood, said he manages by limiting his focus. "The way I look at it is I'm going to get by today and I'm going to worry about tomorrow when tomorrow comes," he said.

[cgk]

Praying for this little girl, her twin brother and her family.

Maria Kent hugs her daughter Hailey Joy Kent in their Simi Valley home. Hailey Joy may need bone marrow for a transplant.

Eight-month-old Hailey Joy Kent smiles as her mother, Maria Kent, kisses her. Hailey Joy has leukemia and her family is looking for blood and bone marrow donors for her. She is undergoing chemotherapy.

Hailey Joy Kent, 11 months old, is scheduled to receive a cord-blood stem cell transplant for treatment of her leukemia.

13-month old Hailey Joy Kent underwent a transplant in May in an effort to fight leukemia.

[cgk]

A Prayer Petition is posted here along with more info on Hailey:

haileyjoy.com

[cgk]

From the blog of the family of a 5 yr old boy Fyn Stec who was diagnosed with liver cancer. They shared their space to post the following:

Hailey and the Kent Family, BLOOD AND PLATELETS needed at CHLA

Hailey and the Kent Family, BLOOD AND PLATELETS needed at CHLA

Hi friends and Family,

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

[Coleus]

.

[SuziQ]

I pray for this child’s complete recovery from the leukemia. Not only for her health, and for her return to her family, but I’d love to see a success in the use of stem cells that have nothing to do with embryonic stem cells so that there will be a LOT of publicity for their use.

[hocndoc]

Beautiful baby. Our grand daughter - and her mother - went through an umbilical cord blood stem cell transplant in Dec. 2001, for "Kostmann's syndrome," an inability to make white blood cells, then platelets and then any blood cells at all. She was sort of like the "bubble boy," and immune compromised, with a blood clotting problem thrown in. She was 15 months old, then, and had had 2 shots a day (neupogen and epogen to stimulate white blood cells and and at least one bone marrow biopsy each month since she was about a month old.

Here she is on the 4th of July, with our Congressman, Lamar Smith. She will be 7 next month and doesn't have to take any medicines at all. She has healed a broken pinkie finger with those bone marrow cells and is healthier than my kids were, with fewer ear infections. She has always been the sweetest tempered human being I've ever known, except for very occasional and very short-lived burst of the "other Roni."

I have hopes that in 6 years we'll see similar pictures of Hailey Joy.