ST. LOUIS — A Pittsburgh family of four has made their way back home after their 100-day visit to St. Louis lasted 493 days. They came into town for medical treatment but left with much more.
Tanner Blackham, a Pittsburgh mother of a child with a rare genetic mutation, has documented 2-year-old Clementine's story on TikTok. When the time came for them to go back home, Blackham thought that she and her husband, Tim, would be traveling without Clementine.
"I didn't think that we were ever going to get that news. I did not think that we were going to be coming home with two healthy kids. To get the news that she got the green light to come home healthy was a better feeling than anything I have ever felt in my whole life," Blackham said.
The past 16 months have been a rollercoaster when it came to Clementine's health: One day, Clementine would be great, and the next day, she wasn't, Blackham said, recalling the journey.
"With her mutation, since it is so rare, there is not nearly enough research out there, and the problem is there's not enough funds to research it yet because people don't want to put their money into research for children if they don't have the outcomes that they're looking for," Clementine's mother said.
Blackham said there are only ten known cases of this mutation in children, which could be one of the reasons there's not enough funding to research thoroughly.
"There will be (funding)," Blackham said. "I will not stop until there is."
When it came to Clemetine's treatment, her mother said the questions were: What kind of chemotherapy do we use? What kind of radiation? How much radiation? How much chemotherapy? What type of immune system medicines is she supposed to be on?
Blackham called the transition scary, considering they were going to be 600 miles away, in Pittsburgh, from the doctors who could help their family the most in St. Louis.
Marina White, the family's nurse at Children's Hospital, described caring for the family as a ball of light.
"I was so sad, but so happy at the same time," White said. "It has been so long. I took care of Clementine on her first birthday. I got to see her at her birthday party on her second birthday. Going through two birthdays for those poor people who don't even live here— I was so happy that they got to go home."
Clementine is one of the first people to ever have her medical condition publicly documented,d and the person behind the scenes was her mother, Blackham, who created a resource for those who may need this story to better advocate for their loved ones.
"Our job is to make sure no other family felt so alone in this process," Blackham said when she learned of Clementine's condition. "The more we share and the more we get her story out there, the better chance another family has at not feeling so in the dark."
Blackham said she not only believed in her mission, but she lived it. The question became: How can we impact the world as much as it has impacted Clementine?
What happened in 493 days
Howard and Finley became friends.
Blackham described the necessary isolation her family endured for Clementine as difficult for her older, healthy 4-year-old daughter Finley. But Finley quickly adapted, finding friendship with her new neighbor, a 5-year-old boy whose health brought him to the Ronald McDonald House.
"Howard is a little boy who was diagnosed with neuroblastoma, and he recently relapsed (with) stage four neuroblastoma in his head," Blackham said. "The survival rate of a child that has relapsed with neuroblast trauma— if you look it up, it's like 5%. Howard's parents are 26 just like Tim and I, and we really connected on the fact that we were the same age with a child going through very similar things."
Blackahm said that while Clementine and Howard did not share the same medical conditions, they had to go through similar treatments: "Chemotherapy and radiation and these harsh medications and transplants— and you know, with small outcomes to live."
Blackham said they wore their masks and played together daily. During their time in town, Howard's family became extended family to the Blackhams.
To follow Howard's journey, click here.
Helping the sick
Blackham found Clementine's bone marrow match after having several drives in Pittsburg. After seven months of waiting, Clementine's match finally came from Europe.
"We know there are hundreds of thousands of other people in the world that need that same support," Blackham said. "They need people to join the registry, and although we weren't in Pittsburgh, our hometown, we are in St. Louis— and there is a whole other part of the community that can join the registry."
In the Spring of 2024, Blackham and Alpha Delta Phi St. Louis University students hosted a Stem Cell Registration Drive on campus.
"It was remarkable. We had almost 500 people join the registry that day. College kids (came from) all over campus, people came from off-campus," Blackham said.
There was even a SLU student who joined the registry and helped someone on the list who had been waiting for a match, Blackham said.
"It was incredible to even just hear that it happened so quickly and that you were a part of saving somebody's life in such a small way," Blackham said with pride. "It's the best feeling in the world. I mean, we can't even believe it. The college let us know that they would like to make this an annual thing, and we will be hosting Bone Marrow Drives at SLU, in St. Louis every single year,"
"It's crazy that I'm so happy that they're going home, but I know we'll all miss them for sure," said Abby Griffith, President of SLU's Alpha Delta Phi.
Griffith and Blackham have formed a friendship, but there's more.
For a week, Blackham stepped up to take Elijah, their 10-year-old neighbor battling Leukemia at the Ronald McDonald House, to doctor's appointments and administer his medication.
"It just shows that everybody that we've come across in this journey has made such a deep impact in our hearts, my kids' hearts, but also that we've impacted theirs," Blackham said. "I didn't realize how many sick kids there were in the world,"
The Blackham family did not only leave St. Louis with healthy children, but they left with more family.
The family will be returning to St. Louis a few times a year for Clementine's doctor's visits— and so much more.
