Family struggles to keep 9-year-old son alive

The Jackson family hasn’t lived in their Tuscaloosa apartment for three months.

They’ve been living at the Children’s Hospital in Birmingham, gathered around 9-year-old Brett Jackson’s bed.

Brett has been diagnosed with neurocutaneous melanosis, a rare form of brain cancer, and the doctors have labeled his condition as terminal.

It started in May, when Brett woke up in the middle of the night with an intense headache and started vomiting. After that, other symptoms showed up, like frequent seizures, difficulty with short-term memory and confusion. Eventually, he became unable to walk and now can no longer talk.

Then a flicker of hope emerged — Memorial Sloan-Kettering Cancer Center in New York City had told Joe and Tanda Jackson, Brett’s parents, that Brett qualified to receive experimental drugs that could possibly extend his life.

The bad news, however, was that Sloan-Kettering would not accept Medicaid to cover the treatment, and the treatment would cost $100,000, Joe Jackson said.

The Jacksons turned to the Internet to raise money for their son. They shared Brett’s story in various Internet communities and asked people to donate. In two-and-a-half weeks they received almost $40,000. A large portion of that money came from members of Fark.com, Joe said.

Then their flicker of hope was diminished.

Joe said Sloan-Kettering had told them Brett no longer qualified for the experimental treatment. Joe said no clear reason had been given, but the doctors at Sloan-Kettering did say Brett did not have what they considered to be a successful flow test — a medical test required to see if the right conditions were present.

“Up until that point [when Sloan-Kettering said he did not qualify] all of the doctors here and the whole family here were under the understanding that he had been green-lighted to go,” Tanda Jackson said.

She said the Children’s Hospital in Birmingham had arranged a flight to New York.
“He had appointments and two MRIs scheduled up there,” she said. “To us, that meant ‘We’ll take you. Come on up.’ ”

Joe and Tanda said they’ve received no clear explanation why Brett no longer qualifies, but they have speculated on what it could be. Joe said when they started fundraising, their story got media attention from The Tuscaloosa News. The New York Times had expressed interest as well. Joe said one day Brett’s oncologist said he received an e-mail from Sloan-Kettering asking to family to back off from fundraising and the media.

“We told them we weren’t going to do that,” Joe said. “Then they told us he didn’t qualify after they had said he qualified.”

Courtney DeNicola, media associate for Sloan-Kettering, said that she could not specifically comment on Brett’s case for privacy reasons, but did say Sloan-Kettering does not withhold care for pediatric patients for financial reasons.

“Our primary concern is providing the best possible care for patients, and we work diligently to determine if patients treated elsewhere can benefit from unique treatment options at Memorial Sloan-Kettering,” DeNicola said in an e-mail. “For any patient interested in a clinical trial, there are clinical eligibility criteria that need to be met.”
She said the criteria used to determine if a patient can participate in a clinical trial are based solely on medical information such as the patient’s health and prior treatment. Patient financial status is not a consideration in determining eligibility for a clinical trial, she said.

Garland Stansell, chief communications officer of the Children’s Hospital in Birmingham, said that from the hospital’s point of view, the Children’s hospital was helping Brett seek the treatment he would receive from Sloan-Kettering and from what he understands, Brett no longer qualifies.

“We understood Sloan-Kettering was going to do the treatment and we’re not really sure at this point why there has been a change,” Stansell said.

Stansell said Children’s Hospital physicians are still working with Sloan-Kettering to see if there is anything that can be done.

Joe said that he did receive a call from Brett’s oncologist Saturday saying that Brett will be able to go up to New York and run more tests to see if he will qualify for the treatment. That’s the next step, he said, after a four-to-five week chemotherapy treatment he will undergo in Birmingham.

The family’s lives have been put on hold while they’ve cared for Brett. They moved to Tuscaloosa in 2006 so Joe could attend graduate school at the University. Joe was in his last year, but had to put his graduate work on hold. Tanda said she’s taken a leave of absence from her job.

Brett is the oldest of three boys. Joshua, 6, and Matthew, 3, have stayed with extended family members while Brett’s been in the hospital. Tanda said Joshua was supposed to start kindergarten this year, but couldn’t since they are not in Tuscaloosa.

Joe said he stays awake and watches Brett at night, in case he has a seizure, and Tanda said she watches him during the day.

Before his battle with cancer, Brett was an honors student, Joe said. He loved riding his bike, roller skating and was a member of the Alabama Boy’s Choir. He loves Alabama football, Joe said.

“He also loves computers,” Tanda said. Brett had created three blogs on his own. One was a blog for the game site Club Penguin.

“We believe that he recognizes us,” Tanda said. “He makes good eye contact. He follows what’s happening in the room.”

“We’re not going to give up hope,” Joe said. “He’s been fighting so hard for himself.”
“He’s a really tough kid,” Tanda said. “It just makes you stand there in awe.”