Cyclical Neutropenia-shmenia

The minute we met Willow’s oncologist we knew he was the best. He reeked of confidence and every nurse we met sang his praises. While his initial diagnosis was leukemia… a discussion about Willow’s health struggles and a few hours of contemplation led him to change his opinion. And he was right! A bone marrow biopsy confirmed there is no cancer in our daughter’s body. If only that could be the end of the story…

When Willow’s oncologist shared his belief that she has Cyclical Neutropenia… part of me didn’t believe him. Not only is this blood disorder very rare… I figured he was a cancer doctor… he could be wrong… right? Unfortunately… it’s not looking that way. Monday’s blood draw showed Willow’s neutrophil (a type of white blood cell) level dangerously low again. This all but confirms her oncologist’s diagnosis. The whole thing has my head spinning.

It feels like a dark cloud is over my family right now. I often end each day struggling to thank God for anything other than the strength he gave me to get through another day. I wouldn’t say I’m depressed… rather stressed and tired. Willow’s blood shows she’s a currently a magnet for infection and facing a future of frequent blood draws and injections (given by me no-less). What more can this little girl have thrown at her?

I think this quote by C.S. Lewis sums it up best…

“We’re not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” -C.S. Lewis

While nothing makes sense at the moment… my faith remains. I choose to believe that God knows what he’s doing and is in constant control. I don’t understand why it’s not enough for Willow to just have Down syndrome and a heart defect. I don’t understand why life has to be so darn busy that there’s no time to process what the heck is going on. I don’t understand why there is so much sadness around me. Why are so many of the people I love… hurting… struggling… ailing? I don’t know! But God does. And I have to be ok with that.

It’s funny how God gives me the strength to get through each day. Often he breaks up the darkness with smile… or a sloppy kiss… or a milestone. Thankfully… Willow’s been reaching a lot of those lately. In the past few weeks… Willow has perfected her waving and clapping and started using sign language! She currently signs “more” and “all done.” She also makes an honest effort to say several words… including “all done… hello… mama… dada… and bath.” She’s also built up her muscles enough to hold herself up in a crawling stance for several seconds! It’s the little things that mean big things during these trying times.

CAM00688

CAM00676

CAM00773

God is good

Advertisements

4 thoughts on “Cyclical Neutropenia-shmenia

  1. I really indentified with that C.S. Lewis quote when my husband had ALS. Also Isaiah 55:8-9 and Lamentations 3:22-23. God IS good. Ray must have said that hundreds of times during those months. Still praying for Willow!

  2. Those milestones are such blessings in a frustrating time. :-/ We continue to pray for Willow (who is, by the way, Ellie’s favorite baby to see pictures of!) and for YOU. Hang in there, Momma!

  3. Full of raw emotion! Somehow I wish I could take your pain away and then again I know God uses our trials to mold, teach, perfect us to be more like His Son. Keep your eyes on Jesus and He will be right there along with you and Willow “through it all”.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s