By JESSICA ABLE
Record Staff Writer
Six-month-old Addison Lynn Miles is fighting for her life.
The infant has a rare form of leukemia and is in immediate need of a bone marrow transplant.
Addison does not have a direct match within her family, so fellow St. Michael Church parishioners Cheryl and Bart Bruner have organized a bone marrow registry drive June 3 at the church, 3705 Stone Lakes Drive.
“This is just our way of rallying around them and for them to feel the love and support of their community,” Cheryl Bruner said in an interview last week.
During her routine four-month checkup on March 5, Addison’s pediatrician discovered what appeared to be a mass in the infant’s stomach. The child’s parents, Danny and Rachel Miles, also parishioners of St. Michael, immediately took her to Kosair Children’s Hospital. Tests confirmed the infant has Acute Lymphoblastic Leukemia Type B.
At first there was hope that an aggressive treatment of chemotherapy and radiation alone would put the cancer into remission, but that didn’t work. Now a bone marrow transplant is a must, her mother Rachel Miles said.
“There is less than a 10 percent chance to live without the transplant,” she said.
Despite Addison’s condition and the procedures she must endure, her mood is good, her mother said.
“Everyday she is nothing but smiles. This past week she’s had a lot of vomiting and diarrhea but she’s still smiling through it all. … If anyone were to meet her, you wouldn’t think she is as sick as she is,” said her mother, a graduate of Holy Cross High School and Bellarmine University.
The bone marrow registry drive will be held in the community center at St. Michael Church from 9 a.m. to 4 p.m. June 3.
To join the registry, potential donors must be between the ages of 18 and 60.
Registration only takes about 15 minutes. Potential donors are required to fill out a brief medical history form and swab the inside of their mouths to collect cheek cells for matching.
After an individual is registered, the sample kit is sent for testing. If a match is found, a representative from the National Marrow Donor Program will contact the potential donor.
After a few more tests, if a match is confirmed (and the potential donor decides to move forward with the donation), one of two procedures will likely occur. The more invasive procedure requires the donor to go under local or general anesthesia. Liquid marrow is extracted from the hip bone.
According to bethematch.org, most donors experience some pain in the back for a few days following the procedure.
The other procedure — a peripheral blood cell (PBSC) donation — is less extensive and involves removing blood through a needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm, the website says.
If someone is interested in joining the registry but is unable to attend the drive June 3, a testing kit may be obtained from the Be The Match Foundation — the organization that operates the registry.
Normally it costs $100 to join the Bone Marrow Registry Drive, but because of donations already collected, there will be no cost associated with joining the June 3 drive at St. Michael Church. However, a $25 donation is encouraged.
A representative from Be The Match will be on hand at St. Michael June 3 to answer any questions. The Red Cross will also have a blood drive at St. Michael the same day, and a representative from the Kentucky Organ Donor Association will also be present.
Cheryl Bruner hopes to have at least 1,000 people join the registry at the June 3 drive.
“They (the Miles family) know that God is the ultimate physician, but we all feel like we need to do our part to help Addison to have the best chance from a medical standpoint,” she said.
Danny and Rachel Miles, who also have a six-year-old daughter named Abby, have chronicled Addison’s journey on caringbridge.org, a free website that allows family members to post updates. To read Addison’s journal, visit www.caringbridge.org/visit/addisonmiles.
For more information about the bone marrow registry visit bethematch.org.