A medical rarity, losing two children to childhood cancer

He was seeing two therapists and a priest. None of them knew how to help. Doctors told him and his wife that their situation was the most unique pediatric cancer story they had seen in their careers.

“You know, there was no floor underneath us,” he said. “We just had therapists and grief counselors alike telling us that they had no background or training for a couple in our situation.”

Joseph Mackey, 60, and his wife Tammy, 54, lost two of their three children to cancer in just 30 months of each other. Their daughter, Claire, had just turned 15 a week prior to her passing. Their son, Patrick, was a new high school graduate and just 19-years-old when he passed.

Their eldest son, Connor, was attending Indiana University for his undergraduate career when he lost both of his siblings

The story starts in May 2011, just two weeks prior to Claire’s fifteenth birthday. Mackey remembers not being invited to participate in the planning of her birthday slumber party, he laughed.

Instead, he was put in charge of helping organize the transition of her “childhood bedroom” into something better fit for a teen.

“Tammy and I kept joking that Claire had been born into the wrong era,” he said. “She picked very bright, tie-dye colors and decorations for the new room. It was a very 60s theme.”

In the midst of party planning and room decorating, Claire had begun to complain of hip pain, he said. The pain was sporadic at first, but over the period of a week she became more insistent that it hurt.

A trip to the pediatrician told them it was sciatic nerve pain. Though, shortly later, Claire began spiking fevers along with the pain in her hips.

Patrick called his father from school and told him about Claire’s worsening symptoms and that she needed to leave school.

“I left work and went straight to the school while calling her doctor and telling him something was going on and I would be bringing her in shortly,” he said.

When Joe and Claire arrived back at the pediatrician’s office, her doctor pressed on her abdomen and she winced in pain, he said. She was sent over to the hospital for further testing and a closer look at her appendix.

Tammy worked as a nurse at the hospital, so when Claire was admitted, both she and Joe were able to be there immediately. Around 9 p.m. that same evening, a doctor came in to tell them they were sending Claire to Riley Children’s Hospital in Indianapolis because they were better equipped to handle what doctors’ thought was a vicious infection, he said.

She was admitted on a Friday and spent the weekend in the infectious disease ward before being introduced to a pediatric oncologist who informed the family Claire had been diagnosed with Acute Promyelocytic Leukemia (APML).

“We were told that this type of cancer is very aggressive in children, who are only diagnosed with it about two percent of the time,” Mackey said. “It is most commonly found in middle aged males, and occasionally in women 50-years and older.”

She was moved from the infectious disease ward to the pediatric ICU and put on an ECMO machine—a device typically used to preserve the organs of an organ donor.

“We lost her two days later on June 8,” he said. “She threw two blood clots; one to the lung and one to the left side of her brain. It was like a bomb went off at our dinner table, we went from this birthday girl transitioning into to a teenager to losing her in a matter of 13 or 14 days.”

The single best thing the family did was seek grief counseling through Riley Hospital, he said. For three to four months, they made trips to back to Indianapolis to work through the sudden loss.

“So then of course the new normal sets in,” Mackey said. “And the new normal is everything that fills some of that hole in your heart that she left when she passed.”

In the spring of 2015, Patrick and Connor were both developing well, Mackey said. Connor was in his third year of college at Indiana University. He had found a girlfriend and was performing well academically.

Patrick was in his senior year of high school and had just won his third state football title. He was also an active member of the stage crew for the spring play that year, Mackey said.

One afternoon, Patrick’s school was holding a blood drive and a number of seniors had waited until last period to go donate, he said. The nurse told the group of students she only had time to take one more person and, randomly, she selected Patrick.

The nurse ran a pretest on his blood and informed Patrick that his hemoglobin levels were extremely low, especially for someone his age, and that he was unable to donate. In a normal, healthy teen, hemoglobin levels should never be below 14. His was at 10, Mackey said.

That night, Patrick told his parents what the nurse had said about the hemoglobin levels and Tammy immediately went into action mode, Mackey said. They ordered a CBC test, a complete blood count, for the next day.

The pediatrician called with heart-stopping news. Patrick needed to see an oncologist and the soonest local appointment available was in two weeks.

“We lost a child already in 14 days,” Mackey said. “We couldn’t wait 14 days.”

Immediately, he and Tammy began calling any oncologist in the Yellowpages, he said. There was one doctor who promised to take a look at Patrick’s CBC, and if he saw something out of the ordinary, agreed to see Patrick first thing in the morning.

“At 9 a.m. Saturday morning the guy called me and told me he had asked a pediatric oncologist at Riley Hospital to take a look at it and that they wanted to see Patrick in the clinic on Monday morning,” Mackey said.

Back in the same hospital and the same ward that they had lost Claire less than two years prior, the Mackey family was told that Patrick had been diagnosed with Lymphoblastic B-cell Leukemia.

Immediately, they began treatment, Mackey said.

“He survived for eight and a half months of treatment until a stem cell transplant infused cells were slow to come on,” he said. “Infection set in and then he was pretty much gone.”

The way Mackey explained Patrick’s death is that he died of an infection because he had cancer. The cancer had made his body so weak that it was incapable of fighting off the infection.

“Losing one child destroys something like 80% of marriages,” Mackey said. “No trained professional could even talk to us about losing two children like this.”

He and Tammy met with the genetics department in the oncology ward and several tests showed that the cancers Claire and Patrick suffered from were genetically unrelated to each other, or to himself and Tammy.

“The shock of it all was so unbearable initially,” he said. “We paid therapists just to listen to us and Tammy and I agreed early on that this was something we could not medicate ourselves out of.”

He, Connor and Tammy all struggled to grasp the immense loss of not one, but two children in the family. It wasn’t until the summer of 2015 that some of Patrick’s friends came to see them that they had any plans on how to move past the loss.

“Five or six of Patrick’s closest friends had come to speak to us and wanted to discuss starting a foundation to memorialize Claire and Patrick,” he said. “We talked about focusing specifically on pediatric cancer families in the area who are burdened not only with the battle against cancer, but the financial battle as well.”

The Claire and Patrick Mackey Foundation was started in the summer of 2016 and their mission was, and remains, to identify a need for families dealing with a pediatric cancer battle and write them a check to help with whatever they need financially.

“Sometimes it’s buying groceries, getting a car fixed, Christmas presents, really anything that we can help contribute to,” Mackey said.

As pediatric cancer has been further studied, Mackey continues to educate himself and follow the progression of medicine and science, he said. His passion for healthcare inspired him to run for congress in Indiana’s district four.

“There is a huge inequity in the rural versus urban communities,” he said. “We are seeing such a high infant mortality rate in rural areas, improper obstetrics programs for pregnant women.”

Something Claire and Patrick’s deaths taught Mackey is understanding medical terminology and the science that is being used to help fight and cure cancer, he said.

“To me this is not about being a democrat,” he said. “You don’t have to vote for me to see a change in our healthcare system. There is an equally qualified republican representative who you should be talking to about these issues. It is not politics, it’s a human right.”

Mackey and Tammy still operate the cancer foundation in honor of Claire and Patrick. Tammy works as a nurse in an outpatient surgical unit in their hometown of Lafayette, Indiana. Connor married his girlfriend from college and just recently moved to Los Angeles where he and his mother-in-law operate their own mobile dog grooming business, Mackey said.

The three of them have each donated blood that is stored in a depository known as a data silo at Mayo Clinic and can be used by physicians around the world to help create new medicines based on the cancers Claire and Patrick were diagnosed with.