Photos courtesy of Angel Dawson
It started with a seemingly benign lump on Melody Dawson’s head, the kind just about every active kid gets at some point. But it wouldn’t go away.
After multiple doctor’s visits, a pediatrician finally diagnosed her with Langerhans Cell Histiocytosis (LCH). LCH is a rare disorder in which the body produces too many Langerhans Cell Histiocytes—a type of immune system cell—causing lesions or tumours or other tissue damage, particularly affecting bones and skin. It can occur in people of any age but is most common in young children. And in some cases, like Melody’s, it comes with other consequences like neurodegeneration and diabetes insipidus (caused by damage to the pituitary gland).
That diagnosis came in 2012 when Melody was just four. Her diabetes insipidus, which she began showing signs of a year and a half earlier, was quickly brought under control with medication. The LCH required chemotherapy over the course of a year. It’s now in remission.
But six months after completing chemotherapy, Melody began showing signs of neurodegeneration, which affected her ability to walk and talk. “They told me if (the neurodegeneration) comes out, they cannot reverse it, they cannot stop it,” said Melody’s mom, Angel. They tried IVIg (intravenous immunoglobulin) therapy, they tried a study drug called CAMPATH and they tried chemotherapy. None of it helped.
Then doctors at SickKids told Melody’s parents about a different drug trial. She was one of a handful of children to start the trial in June 2015 and the results have been remarkable.
Prior to the drug, Melody’s condition had degraded to the point where she could barely walk or talk. “Within a month of being on that drug we saw improvement,” said Angel. And for the past year she’s been able to talk and walk, and even run down the hall. “She’s not 100 per cent, but this drug stopped it and reversed some of it. There is damage and she’ll always have that, but from where she was she is 100 per cent in my mind. The drug has been tremendous for her. (Her improvement) is like night and day—it makes you want to cry.”
Although her walking and talking have improved, Melody’s comprehension is still reduced but Angel is hopeful that it, too, will return. In the case of another child on the same drug, “it was like a cloud lifted out of his brain and he can concentrate and understand things, whereas Melody can’t,” said Angel. “It’s hard for her.”
Melody is now 10 and finishing grade five at Irwin Memorial Public School. Her condition has stabilized for now. “There’s been no more major improvement, but there’s no regression either. I’m hoping when she gets older and the dose goes up more, maybe it will improve her more but we don’t know,” said Angel.
So for now, the educational assistants at Irwin are working with her to bring her school work up to a grade five level. “Irwin is amazing. I don’t worry about her in that sense,” said Angel, adding that the school has done wonders for her two youngest sons, who both have autism, “so I have faith that they will work wonders with her, too.” Melody uses a walker at school to prevent falls, and her classmates know to be cautious around her.
And she continues her treatments as well as going to SickKids every three months for bloodwork and an MRI. She goes to a foot clinic frequently—thick callouses on the pressure points of her feet are a side effect of the drug.
“This will never go away. We just have to deal with what we’ve got and try to keep her going and not let her get discouraged, because she does sometimes,” said Angel. “We don’t know if she will become immune to this drug. And there may come a time when the study will stop and the government may say, ‘does this child need this medication, has she been on it long enough that she doesn’t need it anymore.’ But the doctor said that when that happens, and it may be years to come, he’s going to make sure there is no time restriction so that if she starts regressing, she can go right back on the drug.”
Angel is grateful to the staff at SickKids and the Canadian Cancer Society who helped them with transportation, as well as Candlelighters Simcoe who raised funds to buy the six-member family a van because they didn’t have a vehicle at the time. And she’s grateful to Melody’s school and the people of Huntsville and Dwight. “When Melody first got sick, I had people that I didn’t even know showing up at my door with food or donations. Everybody just got together and helped us.” That help has made an emotionally and financially challenging situation easier to bear.
“I don’t know what the future will hold,” said Angel. “We just keep going, that’s all we can do. It’s just one day at a time.”
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