A year ago today we were at Children’s. The hematologist told us that Ava did not have cancer. I was so happy I cried when he told us. I think I needed to hear that my gut was wrong so badly that I didn’t follow up. I wanted to believe him so much I didn’t press for more. I didn’t question why he didn’t call us back with tests results. I didn’t ask why he wasn’t ordering a BMA like our pediatrician expected. We left Children’s hoping to get on with our lives. Little did we know six months and one day later we’d find out Ava had leukemia.
Over the last year we’ve all learned so much. Today I’d like to focus on the positives. Not because there aren’t negatives, there are plenty, but because it’s just not how we roll. So here are lessons of goodness we’ve learned so far on our journey.
Our kids are tough! They’re all fighters. Each of them has had difficulties to overcome this year and they’ve all done it. I don’t know what the future holds for any of them, but I do know they’re survivors. We all know AJ is special, but I fear I don’t give Kohen and Ellie enough credit for their own badassery. They’re equally notorious.
Not new learning, but definitely reaffirmed, family is EVERYTHING. Also a moms job is never done. The way my mom and Kevin’s mom have stepped up, is a testament to this. Some days I’m sure my mom feels like she’s back to raising kids. Except this time she’s doing it as a single mom and with two dogs to boot. Love you so much, ma!
Kevin and I have learned to truly live our vows, or as Ellie would say, our vowels. Our marriage is not perfect. We definitely bicker and have days were we don’t see eye to eye, but we do our best together. We’ve learned to support and trust each other. It’s funny how much easier life is when your are not second guessing each other’s judgement and decisions. It allows for a lot less bickering.
I learned it’s okay to not always be strong or have it together in front of your kids. It’s okay to show emotion and fear. I think it helps them do the same. It teaches then that feeling your feelings is normal. I also learned that you can’t let fear stop you. I hope we’ve taught the kids that.
We’ve learned so much about having faith and living in hope. As I’ve written before I am not a patient person. This journey has made me wait for the “MRD negative” much longer than I would have liked. I still pray for it, but I’m getting more comfortable with God’s plan. So much so that I know no matter what happens after Ava’s BMA on the 22nd we will be okay. I’ve learned my time is not the end all be all. How did I learn this? Faith.
I’ve also learned that even if your going through some pretty shitty times you can still be kind and help someone else out. When we joined this club no one wants to join, we had amazing friend put us in contact with two amazing women who have been there for us the whole way through. Maura and Melis, I will be forever grateful. Dana and Kristin, thank you for putting each of the ladies in our world. My friend Carla didn’t hesitate to jump in and start prepping me for the battle. These three women are on other side and didn’t mind stepping back in the fire to be there for us. I hope to one day be as helpful other families as they’ve been to us.
I’ve also learned that some of the best support will come from mamas who are in the thick of it with you. When we were first admitted to Hopkins we met Princecine, Anne, and Nga. Anne and Nga have daughters admitted the same day as Ava. A few days later Jennifer came to the floor with her sweet Zoey. All of us have girls fighting a horrible nemesis. They’re the ones who go through the anxiety with you, the positives, the lows, and the unexpected stays. They’re the ones I hope to go through the triumphs with.
Throughout this year I confirmed that no matter what you hear on the news, read on Facebook, or see on TV the world is full of good people! I learned that time and distance don’t matter, if you want to be there for someone you will find a way. Kev and I have had friends from middle school and high school show up in so many ways it’s humbling. We’ve had so many coworkers, neighbors, and old friend support us in so many ways I can’t find a way to put our appreciation into words. The number of people praying for our girl is utterly amazing.
I also learned that Mister Rogers was right when he tells the story about finding the helpers. When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” I can’t tell you how many helpers have been with us on this scary path. Complete strangers who show up for us and our family. They’ve done it out of the goodness of their hearts, expecting nothing in return. Megan the lady who found on the soccer field one day and has become such a great friend. Rose and Steve from the Washington Spirit organization who are always reaching out and finding ways to make Ava feel so special. The Gold in a Fight organization who provided us with yummy meals on Thanksgiving and Christmas. The Ronald McDonald House and all the volunteers who hosted our family during our two week stay in Baltimore. The Olivia Hope Foundation and Never Ever Give Up organization that frequently send packages for the kids. Even ladies who I didn’t know existed and sent so many Color Street nail wraps for the kids at Hopkins. They’ve all taught me there’s no excuse not to be a helper.
In about ten days Ava will have her next BMA. We will learn if CAR-T therapy did the trick and she is MRD negative. A year ago I was praying to hear a specific answer. This year my prayer is slightly different, while I definitely want to know she’s MRD negative, I equally want us to continue to have this faith, this level of hope, and this view of the world. This year I’m praying that she be MRD negative because it is God’s will, not just mine. I pray that I am able to trust in His will, His time, and His way.
I know better than to think MRD negative is the end of the childhood cancer journey. I now know it is a lifelong journey, one that is better when I keep in mind all that we’ve learned this year.
Our family has been blessed beyond belief and no matter what happens I will never forget that or stop being grateful.