Shannon, a first time Marcher, thought her son was having an allergic reaction and took him to Alberta Children’s Hospital for treatment. After being seen, they were escorted into a consultation room and told Sean has a kidney disease called childhood nephrotic syndrome. He was just 3 years old. Shannon’s initial response was “No, my son is here for an allergic reaction, not kidney disease. You must have the wrong child.” Unfortunately, the fight against kidney disease is much harder than that, and for the next two years Sean battled heroically with daily urine dips and extremely high doses of prednisone. The required amount of prednisone caused Sean to become steroid dependent. Whenever doctors tried to take him off the drug his kidneys would respond by spilling protein into his urine. Without protein going into his bloodstream, as it should, his blood lacks enough oxygen needed by his cells and tissues to support their functions. That meant Shannon’s darling little boy had to undergo chemotherapy with weekly blood tests.
Now two years later, Sean is 7 and in remission. That sounds like cause for cheer, but, in truth, it is cause for worry. Sean’s doctor says his progress is brilliant however for true remission they look at a period of five years without relapse. Fear of relapse hangs heavy. In preparation for this possibility, Shannon has empowered Sean with age appropriate information about his care. Meaning this second grader is well aware that sodium and potassium are hard on his kidneys and, while tough, he picks food that is good for his body. In addition to protecting his kidneys, a good diet and lifestyle are vital for Sean because, as Shannon shares, “a cold or flu, which is usually an inconvenience for most kids and families, could send Sean back to ground zero, back to prednisone and chemotherapy.”
Shannon is doing everything she can to care for Sean, ensure he grows up with the healthiest kidneys possible, and prevent other families knowing the pain and fear of kidney disease. That is why Shannon is marching in Kidney March.
