Chronic Pediatric Blood Disorders - Visitor's Story

by Sharlyn
(Iowa, USA)

I used to think the worst thing that could happen to my child is to develop cancer. I used to think that would be absolutely unbearable... But unfortunately, we have firsthand experience that there is much worse out there that is absolutely unbearable for a parent and child to go through...

There is a potential lifelong disorder that even the Doctors do not understand, and have no idea how to treat. I don't even want the thought into my head, but from time to time it creeps in anyway. But sometimes, I wish it would be cancer, because then... it would give us a starting place, a place that Doctors know and understand, and can begin to treat, not be the guinea pig that subsequent patients will benefit from, but not him...

Watching your child go through the same things that cancer patients go through, but knowing there will be no end... that is absolutely unbearable. Knowing my child's life could end in less than half an hour due to bleeding... is absolutely unbearable... And if that doesn't kill him, the high-dosed steroids that he's been on for months now will... it's absolutely unbearable...

Watching, sitting on a stretcher, holding my two-year-old, surrounded by nurses and doctors, blowing bubbles, playing slide projectors of Sponge Bob, and trying to distract a two-year-old from being hysterical, while others are poking him, pulling out the needle, and shoving it back in, because they keep missing, or the vein is already UN-usable, up to 30 different times because all viable veins are blown from being poked so often, while I hold him down on my lap, and he is sweating, hysterically screaming, fighting, punching, pinching, throwing stuff, begging, and passing out from the pain, and wets through his diaper all over my lap, even though he was just changed 15 minutes prior, while I (mommy) sits and allows it to happen and he looks up at me with his big eyes asking why won't you help me? And all I can do is look away and pretend not to see... is absolutely unbearable... Knowing that chemotherapy won't cure this... is absolutely unbearable... Knowing we will be back next week for the same ineffective treatment... it's absolutely unbearable...

Being stared at in the hallways, like a freak show, when you try to take the child for a walk to get away from it all, for a bit... it's absolutely unbearable... Being told your child should not have that cookie, because he looks like he needs to be on a diet, because he is so swollen from the steroids, he can barely open his eyes, and mommy wants to see him smile again, even if it's only for a few short moments when he gets to eat his favorite cookie and mommy is so happy that he does... And then, some ignorant person says that kid should be on a diet, not be eating cookies... is absolutely unbearable...