Two and a half years ago, a routine blood test led doctors to tell us that they thought our youngest daughter, Willow, had leukemia.
They were wrong.
Unfortunately, the celebration was short lived. Turns out, Willow’s wonky blood numbers were due to a rare blood disorder called Chronic Benign Neutropenia. For those unfamiliar, neutropenia is when your body has difficulty producing the type of white blood cells (aka neutrophils) needed to fight bacterial infections. It’s unrelated to Willow’s Down syndrome.
For the first year after her diagnosis I feel like we lived in a bubble. I didn’t take Willow many places for fear that she might get sick. If someone attempted to touch her, I often freaked out. What’s worse is that if one of my other children so much as sneezed or sniffled, I promptly directed them to the hand wash then banned them from coming near Willow until I was certain they weren’t sick. Hugs and kisses became less frequent in our house. It’s as if neutropenia made me afraid of love. The whole thing is sick. It makes me sick….
I was told by Willow’s hematologist that a simple infection could lead to death, quickly too. To help protect our daughter, I learned how to give her injections of a drug that sparked neutrophil production. Unfortunately, it caused her lots of pain. Fortunately, for a child with neutropenia, Willow remained relatively healthy. That is where the mystery comes in. If you looked at her blood, on a good day, Willow had barely any neutrophils in her. Yet the only signs of her neutropenia were little things like mouth ulcers or pimples that went from zero to 60 in a matter of a day. What I mean by that is that if she had a pimple on her body and I didn’t treat it quickly with alcohol or antibacterial ointment, it often turned into a full blown infection. But, other than that, she was relatively healthy. I give all the glory to God as none of it made sense. Even her hematologist seemed stumped at times. At her last appointment, he offered up his latest theory that maybe her other white blood cells are filling in where her neutrophils are falling behind. Maybe…..
I want to talk about another one of her doctor’s theory’s. Back when Willow finally got a name put to her problem, Willow’s hematologist told us he believed this would be a life long struggle. Let me be clear. I love this doctor. He is a great man. He is the best of his kind. He goes above and beyond. But, never for a moment have I believed Willow’s blood troubles were permanent. My husband and I haven’t been willing to give up that little bit of hope….
… and this week our hope grew. Like, a lot!
Recent blood tests show Willow is making neutrophils to the point where her hematologist said “she may be growing out of her neutropenia.” Say whaaaaaaaaaaattttt????
God is good, people! A little bit of hope has turned into a whole lot of celebration! While we’re not exactly out the woods yet, we’re headed in the right direction. I can’t even explain the excitement.
I cannot wait to go to the beach this summer… the non-chlorinated kind… and not have to worry about all the bacteria being slurped by my toddler!
I cannot wait to throw this big box of syringes away! (Obviously, in a safe way :))
I cannot wait to see the word “neutropenia” taken off my daughter’s medical chart!
And I cannot wait to see what God does next in my daughter’s life…..