Family with child with weakened immune system seeks a home
All Dan Fogakoldyke wants for Christmas is a house for his family. A house that is clean, warm and suitable for a five-year-old child who’s being treated aggressively for rare brain and spinal cord cancer that has left her with a weakened immune system.
While other people are fretting about Christmas presents and parties, Fogakoldyke, 42, a Lanesville painting contractor, has been dealing for weeks with a huge load of medical, financial and logistical problems.
His daughter, Morgan, once a lively and energetic child, has an extremely rare form of cancer, called ATRT, in her brain and spinal cord that doctors have been treating for more than a month at the famous St. Jude Children’s Research Hospital in Memphis, Tenn. Her condition seemed grave until a couple of weeks ago when she started responding positively to treatment. Thirty-one heavy doses of radiation have apparently stopped the growth of cancer cells in her brain; more tests will be done in January to see if cancer cells are growing in her spine. However, the radiation has left her with the usual burns, a weakened immune system and vulnerable to infection.
So, when Dan and Elizabeth Fogakoldyke bring Morgan home next week, the environment will be crucial. It must be dust- and mold-free. While Elizabeth has been staying 24 hours a day with Morgan in Memphis, Dan has been periodically making the 800-mile round trip between Lanesville and Memphis, trying to run his painting business, take care of three other youngsters at home, and look for a house, which must be spotless, with vinyl or hardwood floors, not carpet.
The local market has few homes available for a blended family with special needs to move into immediately, so, ideally, the best place would be a new home.
Fogakoldyke has no medical insurance plan and the bills are mounting. In the past two years, Elizabeth, 40, had to have a hysterectomy plus four other surgical procedures, and their two boys, Eugene, 13, and Ethan, 9, are asthmatic with other learning disabilities that require special attention. Their next-to-youngest child is Shawna, 7.
(Dan’s other daughter, Cassi, 16, lives with her mother, Edna Armstrong in Corydon.)
Fortunately, the Fogakoldykes are connected to a generous community and church. They have received donations from the Lanesville elementary and high schools, the Heritage Weekend Committee, Lions Club, Cub Scouts, Boy Scouts and individuals.
The Rev. Webster Oglesby, pastor at Lincoln Hills Christian Church in Corydon, said the Move A Mountain Ladies Prayer Ministry has held pancake breakfasts and other fund-raisers to help the Fogakoldyke family, in addition to Chad Deatrick, 26, of Laconia, a church member who has brain cancer.
People who want to donate or help the Fogakoldyke family can contact Lincoln Hills or the Community Bank of Southern Indiana at Highlander Point in Floyd County. To give money for Chad Deatrick, contact Lincoln Hills Christian Church.
Dan said Morgan’s illness showed up in September when she started having blurred vision and migraine headaches. Neurologists at Kosair Children’s Hospital in Louisville discovered a three-inch-diameter tumor in her head. Three days later, surgeons removed most of it in a very high-tech procedure that lasted 14 hours, Elizabeth said.
However, they were not able to remove the entire tumor because of excessive bleeding, Dan said. Within days, the tumor had started to grow again. Doctors figured that with standard treatment, Morgan had less than a year to live. Dan said Kosair doctors told him they had seen that type of tumor only twice before, and both patients died within a year.
Some friends of the Fogakoldykes got on the Internet and found that doctors at St. Jude had marked success (60 to 70 percent) with ATRT, which stands for atypical teratoid rhabdoid tumor, an aggressive cancer that affects children, said Jennifer Havens, R.N., who coordinates the brain tumor program at St. Jude. The Fogakoldykes went to Memphis and stayed at the Grizzly House, one of three housing facilities on the St. Jude campus for families who need a place to stay while a member is getting extensive treatment. Another operation was performed, on Oct. 15, and this time the brain tumor was removed.
Nine days after the last operation, another scan showed more tumors, one the size of a quarter. Radiation started the first of November.
Worse yet, what appeared to be a thin ‘sugar coating’ layer of cancerous cells developed around Morgan’s spine and brain. The cancerous coating inhibited the natural flow of liquids in the brain and spinal column, so a shunt was installed in Morgan’s head on Nov. 9 to relieve the buildup of fluid. Pressure on the optic nerve was causing her to go blind. Her vital signs began to fluctuate ‘all over the place,’ Dan said.
However, four weeks of radiation began to do its work in mid-November. Morgan’s condition has improved to the point where she is now being treated with maximum doses of radiation on an outpatient basis, and she has started to regain her sight, which will never again be 100 percent, Dan said. She will finish her treatments next week and be coming home.
She’s scheduled to return to Memphis in January for more tests. Then, most likely, starting in February, she will have four months of alternating stem cell ‘rescue,’ chemotherapy and stem cell ‘replacement.’ The stem cell procedures are designed to enable her to rebuild her immune system. If all goes according to plan, Morgan could come home again in June.
Dan and the three children have been living with friends, Cindy and Jay Fisher, in Lanesville while Dan tries to find a house. He’s been working with a bank loan officer on a plan to eliminate some debt so he can be eligible for a down payment loan of $5,000 to $10,000. And a realtor’s helping him reduce closing costs on a modular home that looks ‘almost brand new’ and is ‘priced very well,’ Dan said.
The various medical bills are staggering. St. Jude is billing Dan’s Hoosier Health Care card, and other bills there will be picked up by the St. Jude Foundation.
Dan has spent so much time in Memphis that he’s hardly had time for his job, and he’s not making much money. He said his crew will finish a job today they started Oct. 2.
‘For a month now, I’ve been there (at St. Jude) a lot more than I’ve been here.
‘You just do what you have to do to get through it,’ he said. ‘Everybody’s support, everybody’s financial support has been a major factor that’s enabled us to keep going,’ he said yesterday. He said he and his wife have leaned heavily on the people at Lincoln Hills Christian Church.
Dan said Morgan is ‘110 percent life. She’s got a very outgoing personality, a little mischievous. She’s afraid of nothing. She’ll climb anything, do anything. She’s the youngest kid in the family, but she can whup all of them.
‘We’re beginning to see some of those Morgan characteristics come back now. But she’s still very weak.’
About the only time she wanted to give up was about the time doctors inserted the shunt, in early November.
One week after her birthday, on Nov. 12, ‘she started to come around and started to try again,’ her dad said. A week after her fifth birthday, Morgan was allowed to get out of bed and start walking again.
People who want to give donations to St. Jude can send them to 501 St. Jude Place, Memphis, TN 38105.