It’s Down syndrome Awareness Month. Let me just say… I’m aware. Very aware. One look at the cords attached to my daughter… one listen to the beeping monitors next to her… reminds me constantly… The Mighty Willow has an extra chromosome… and that tiny little difference can produce big challenges in life.
Right now The Mighty Willow is facing one of her biggest battles… in the hospital. Like many of her previous battles… it’s health related. About a week ago… a routine blood draw showed a low white blood cell count among other things. Being that people with Down syndrome are at a higher risk for leukemia… flags were raised. Willow’s risk is even greater due to the fact she had what is called transient leukemia at birth. That means her blood showed leukemia when she was born… but it was normal by the time she was released from the hospital. So… flash forward to this past Thursday… when a follow up blood draw showed even lower levels of white blood cells and other infection fighting things (can you tell I’m not a doctor?). Within a few hours of being pricked… Willow was being told to go straight to the hospital. Her pediatrician feared she had leukemia and in her words she was “scared.”
When we checked in… the oncologist said he was leaning toward leukemia too. But the only way to tell for sure was a bone marrow biopsy. Flash forward 24 hours (mix in a bunch of fear… pain… crying and praying) and the results showed NO LEUKEMIA!!!!! But unfortunately… her neutrophil level (the primary defense against infection) was still next to zero… leading doctors to suspect a cyclic blood disorder. Add a fever and partially collapsed lung into the mix and Willow bought herself a longer hospital stay.
I am leaving out SOOOOO much information here… mainly because I ain’t got the time nor energy to go there right now. Let me just say the current prognosis is nothing short of a miracle. Today’s blood draw showed the drugs (neutrophil boosting drugs that cost more money than we’ll make in a lifetime…God bless health insurance) are working!!!! So much so that Willow may go home as early as tomorrow.
From what I understand… the next few days…weeks…and months will contain many blood draws. Doctors will be monitoring Willow’s wbc and neutrophil levels to see if this whole nightmare was an anomaly or proof Willow has been dealing with a cyclical blood disorder (requiring daily injections by non other than me…ish). I am obviously praying for the whole fluke thing and I believe God will continue to work miracles. He has been INSANELY present throughout this entire ordeal. Man… He is good.
Let me tell you who else has been present… our friends and family. Wowsers are we blessed. My parents… our church FAMILY… friends… have all been an AMAZING support. Offering prayers… baby sitting… food… love… Man… I can’t tell you how blessed we feel. And today… as I write… a big group of Willow’s supporters are walking in her honor at the Gigi’s Buddy Walk in Fargo. I am so sad that Willow and I are missing the fun… but have soooo enjoyed seeing pics on Facebook and can’t wait to hear more about how it went later today. I promise to post pictures when we get out of this joint. Thank you to everyone who donated (right now our team “The Mighty Willows” has raised more than $8,500) or bought a t-shirt… or walked. THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So… to cap this whole post off… let me mark Down syndrome Awareness month by making you aware of how amazingly strong an extra chromosome can make someone. I think the world sometimes views Down syndrome as a weakness. I wish you could see how mighty my Willow is. There’s no way I could go through all she’s gone through… and still find the strength to smile. God uses everyone for His purpose… He loves displaying His power in unexpected places… unexpected people. Just look at my daughter….