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Christmas at home was the doctor’s order for Addison Miles.
Leave the hospital and spend time with family, doctors wrote the prescription for her future, which includes another bone marrow transplant, the third of her 22 months of life.
But her family, Rachel and Danny Miles of Finchville, along with her sister, Abby, have been trying to stay “cautiously optimistic,” said her doting grandfather, David Miles.
“She’s doing fine right now; her tests came back showing no cancer in her bone marrow, but another showed pre-cancerous cells,” he said. “So she is cancer free right now, but it’s only a matter of time before it comes back.”
That’s the reason a third transplant has been set for January, he said.
The toddler was stricken with acute lymphoblastic at just a few months of age, and two bone marrow drives, held in Louisville and at Shelby Christian Church, yielded two matches, a woman in her 50s and a young man in his 20s.
It is from the former donor that the child will receive bone marrow this time, Miles said, as the first two transplants from the other donor were rejected.
“We did two transplants with the twenty-four-year-old person, but they didn’t work, so we won’t be able to use him again,” he said.
But the efforts of that young man have been greatly appreciated by the family, Miles said.
“He flew to Louisville twice to donate stem cells for Addison,” he said. “We do not know who this person is, but he deserves a high place in heaven. God bless him, wherever and whoever he is.”
The little girl has been in and out of Kosair Children’s Hospital for most of her young life.
She had her first stem cell transplant July 18, with four transplant boosts in the following weeks, which were additional stem cells given because the transplanted cells couldn’t grow fast enough to develop her new immune system.
The doctors learned on Oct. 31 that she had lost her first stem cell engraftment, which basically meant her body was rejecting the transplanted cells. Addison underwent three days of Chemo and had a second transplant on Nov. 6.
Keeping up the fight
On Nov. 30, when Rachel Miles took her daughter back to the hospital for a check up, “blood work brought horrific results,” David Miles said. “Adda had lost her second engraftment and would have to start over yet again with another transplant. How can there be so much happiness and joy, only to learn this devastating news?”
That weekend, her port line failed, for the ninth time, and she had surgery Dec. 3 to install a new one.
And all the time, she has been fighting a virus since very early on in the disease.
So when doctors told the family to take Addison home and let her enjoy Christmas and give her body time to grow stronger for the coming ordeal in January, they accepted the reprieve gratefully, Miles said.
This Christmas season is the first time she has spent any amount of time at home, Miles said, adding that her family has been reveling in just having their daughter home.
“She is just spending this time at home getting stronger, getting ready for the transplant in January, and let me tell you, everybody has really enjoyed feeling like a normal family. It’s something that other people take for granted.”
A special Christmas
How did Addison and her family spend her Christmas?
“They just had a blast, watching her play with her toys under the tree, you just wouldn’t believe the joy we have found in such a simple thing as the pleasure she has gotten from watching a train that was set up under the tree,” Miles said with a catch in his voice.
“She is jabbering away since she’s been home, and just doing a lot of things she wasn’t able to do just a few weeks ago.”
Miles said his son and daughter-in-law have been through so many ups and downs with their daughter and they are hoping against hope that this time, the transplant will be successful.
“They met with Dr. Lucas this morning [Friday], and they have set the transplant for the end of January, and so we’re in another waiting game,” he said. “But our hopes are high.”
The entire community of Shelbyville has been following the little girl’s progress, especially since the second bone marrow transplant drive was held at Shelby Christian in July, with hundreds of people turning out in support of the Miles family.
Magistrate Tony Carriss, who has been a champion for so many causes in the community, said he was glad to hear that the child who has captured the hearts of so many in Shelby County will have still another chance to beat her devastating illness.
“She is certainly in the thoughts and prayers of everyone in the community,” he said. “I know it’s been tough on the family, but I hope they know we are all in there pulling for her.”