Twins Kyle and Kolby Easterling, who are just about to turn 3 years old, were in separate hospital rooms at Duke Hospital on Wednesday with mother and grandmother as they awaited a bone marrow transplant to be performed on Friday after recently going through a nine-day chemotherapy regimen to prepare them.
Mother Kayla Easterling and Jonesville resident and grandmother Virginia Finney sat with the twins separately in an effort to avoid the possibility of either of them having any exposure to anything that could adversely affect their immune systems. If that were to happen, the bone marrow transplant could not proceed.
Both twins were diagnosed with the rare disease Adrenoleukodystrophy at the ages of 1 month old. Their mother said only one in 17,000 people get the disease with mothers being the carriers.
Kayla Easterling said her brother died with the disease, before many knew what it was. Without treatment, those who have it will end up in a vegetative state due to a disorder in the enzymatic ability to break down long chain fatty acids, said Easterling. It is the disease on which the movie “Lorenzo’s Oil” was based.
Easterling said doctors monitored the twins and when they saw some things they did not like on the MRI brain scans last November, they knew it was time for the bone marrow transplant to occur. She said, “It was all very fast. We discovered in late November, they would do it.” She said doctors told her they had a spot for them at Duke to do the procedure in late March.
She said blood taken from umbilical cords would be used to get bone marrow for the transplants. Duke has a program that uses the blood from donated umbilical cords for the procedure, she said.
Easterling said after the required nine days of chemo and a day of rest, and the transplant, the next step will be to wait for cells to regrow which typically takes 20 to 30 days.
Then they will rebuild the immune system on what Easterling called isolation floors found at the hospital. The twins mother said she could be at Duke Hospital up to six months, before she is released as outpatient. She will then stay in a Ronald McDonald House (about a year), she said. She said the procedure requires watching growth over an extended time period.
“It is hard to sleep, there is no privacy, but I just have faith in it. It is temporary and one day we are going to leave behind these wooden doors, I have hope for my boys that they are going to be well and grow up strong men,” said Easterling.
She said Kyle is more of the loud one, who likes attention, and loves Mickey Mouse, Thomas the Train and is overall doing well by soaking up the attention. She said Kolby is the laid back one and is a child that entertains himself, and is content by himself.
Overall, she said they are not handling the oral medication part well but otherwise seem strong. She said other than having to wear the dreaded face mask, they are getting used to being hooked up on medical equipment.
“I am shocked about how well they are adjusting,” said Easterling.
She said even though she knew this day would come, they lived happy lives and tried to do as many fun things as they could.
Before the bone marrow transplant, the children’s mother said they went to Disney World through Make a Wish, and enjoyed themselves. Easterling said, “They liked the characters dressed up.”
She said she tells them, “We are just here to get better.”
With the twins only about to just turn 3, their mother said she just tries to comfort them “when they are about to do stuff to them.” She said blowing bubbles, playing videos and having soft stuffed animals that they enjoy has helped.
Meanwhile members of Bible Baptist Church of Jonesville have reached out to the family in prayer and are holding a Kolby and Kyle Benefit on May 3 from 11 a.m. to 4 p.m.
It is a fundraiser that is sowed in faith, said the pastor’s wife, Laurie Lankford. She said the church has hopes of raising what money is needed for the Easterling twins and family. Dwayne Lankford is the church’s pastor. The pastor’s wife said the group is a small one of about 40 to 50 and has been pitching in for the cause.
“I hope it makes our church grow together as a whole,” said Laurie Lankford. She added God moved the church to do the benefit.
Kayla Easterling grew up going to Bible Baptist Church in Jonesville. She said her grandmother goes every week. She said her brother, who died with the disease, is buried at the church.
For the Kolby and Kyle Benefit, Jonesville Bible Baptist Church will have hot dogs with homemade chili and fixings and desserts made by the ladies of the church. Donations will be accepted for the food.
Gospel group Cranberry Creek will be performing and also singers, Woodie Smith, Tim Parks and possibly others.
Anyone unable to attend the fundraiser for the twins may make call-ins and have orders ready to be picked up for their convenience. The number for call-ins on May 3 will be 336-244-7622 from 11 a.m.to 4 p.m.
In addition, donations may be made to Kolby & Kyle Benefit, c/o Bible Baptist Church, 5933 Hwy. 21 South, Jonesville, NC 28642. More information may be found at www. facebook.com/Bible-Baptist-Church.
Tanya Chilton may be reached at 336-835-1513 or on Twitter @TanyaTDC.