859 Days

Jono Nagel Stories

Eight hundred and fifty nine days. 859 days after our souls were crushed by the news that our toddler had blood cancer, she has completed her course of treatment. She has victoriously crossed the finish line in the endurance test of a lifetime. For 859 days we have spent a large portion of our waking hours worrying. Worrying that Brooklyn was losing too much weight, or that she was going to pick up a common cold that could cause permanent damage. Worrying that she wasn’t getting the right nutrition for her cancer-fighting body and that she would never walk again after losing mobility in her legs. We worried that she wasn’t socializing enough, and that she would be emotionally traumatized from so much pain and challenges at such a young age.

We have also been so afraid that she wouldn’t wake up in the morning due to cancer or going into hypoglycemic shock. We will always be afraid of relapse and of secondary cancers from the terribly toxic treatment itself. We have also worried about her younger brother, Thomas. Will he be affected by spending so much of his early life in a hospital with his sister rather than meeting with friends and relatives? Have we made him feel loved and cared for as much as he deserves to be, even though we have been forced to pay so much extra attention to his sister during his infancy? For his entire life, Thomas has been the brother of a cancer patient. Tomorrow that changes.

In what felt like an ironically appropriate ending to the treatment plan, Brooklyn woke up at 12:45 a.m. on this very last day with croup, gasping for air, crying tears of panic, and throwing up from such violent coughing. A routine middle-of-the-night conversation with the pediatric oncologist on call brought us to the Emergency Room for a quick examination and very small dose of steroids to help open up her airway. We were home by 3:30 a.m., in record ER time, and both kids went back to sleep only to wake up at 6:45 a.m. as if nothing noteworthy had happened overnight.

Brooklyn swallowed her last chemo pill EVER this morning. She acted slightly impressed, but she has absolutely no concept for what she has just done. It is that innocence and acceptance that has pulled our family through each and every day of treatment. In the car this afternoon, Brooklyn was apparently unimpressed with what I was playing and out of the blue requested “Fight Song” by Rachel Platten. I asked her why she wanted to hear it, and she said because she likes the part where she says how strong she is. Queen B smiled throughout the chorus, “This is my fight song. Take back my life song. Prove I’m alright song. My power’s turned on, starting right now I’ll be strong, I’ll play my fight song. And I don’t really care if nobody else believes, ‘cause I’ve still got a lot of fight left in me.” So maybe I’m wrong…maybe she does have a concept for what she has just done.

So often throughout this battle we have asked ourselves, “Why Brooklyn? Why is she having so many complications? Why can’t we catch a break?” This week I came across the following words by Susie Larson, shared amongst some other cancer moms:

“May God Himself fill you with pure joy amidst your trials. May you understand that He’s developing perseverance in you so you’ll be mature and complete, lacking in nothing. May you see the blessing in your battles. Instead of becoming self-aware and wondering why so many arrows are aimed at you, may you simply become a better warrior. May you lay hold of the generous amounts of wisdom God has offered you in this place so that when it’s all said and done, you’re still standing.”

Over the last 859 days, we as parents have felt severe emotional pain, worry, weakness and utter devastation. We have learned that people can endure so, so very much. We have also felt immense pride, hope, love and strength as we have watched our toddler show us and so many others how valuable every breath of life is, that a positive attitude can heal even the deepest darkest pain and that miracles are possible. We have felt unbelievable gratitude for the friends, family, community, and strangers who pray for us constantly and cheer for Team Brooklyn. We have seen the very best side of humanity in the acts and words of kindness that have lifted us up each and every day. And now, finally, after 859 days we get to feel THIS. THIS is what it feels like to get to keep your child even though not too many years ago, she would have been gone forever. THIS is what a second chance feels like, and we intend to live it to its fullest because we are all still standing.

Written by Michelle Vaith 
Michelle is the mother of two, Brooklyn and Thomas. Brooklyn was diagnosed with acute lymphoblastic leukemia (ALL) when she was just 2 years old. To read more about Brooklyn, check out Tough Beyond Her Years: Brooklyn’s Story.