Lea dripped ice cream over my bright white duvet cover months ago during one of our many middle of the night steroid feeds. Back when she still needed ice cream to get the four small white pills down. Back when this was all fresh and new, but no less scary than it is today. Back when we didn’t have an idea of what this was yet… when we had never even heard of DIPG. Now, it is all we think about.
You know the comforter I am referencing, the one you take out in the summer and try so hard to keep a sparklingly white? Yes, that one. I didn’t care that she dripped chocolate ice cream all over the pristine white fabric. I didn’t run to dab it with water and laundry detergent, like I would have done in the past. I didn’t scold her. I didn’t tell her to be more careful.
I let it sit there and soak into the fabric as my salty tears spilled down to join the chocolate stains. I didn’t want to wash it away. I wanted to leave it there as a memory of her. Not of this horrible time, but of her, and of those sweet moments together.
I took that duvet cover off the bed last week and washed it, as I always do at the end of the summer. When I took it out of the dryer I was pleased to find my “natural” laundry detergent didn’t get the stain out, and it will remain there forever.
I find myself completely in love with my new daughter. It scares me to say I am having a hard time remembering who she used to be. She is not the same Lea we once knew and loved, and yet I love her even more, if that is possible… something that is so bittersweet. I told my mom I don’t want to love her anymore than I already do… it makes the thought of losing her unbearable.
Our days together are so sweet. We play countless game of Memory, and Lea paints, draws and colors with her favorite tool at the moment, paintbrush markers.
I asked Lea last week how she feels about having a tumor in her brain. She thought for a moment, eyes glancing up and to the left for just a moment and replied “I feel ok about it.” I then asked her how she felt about not being at school with her friends this year. “I feel ok about it.” That’s Lea, rolling with life’s most awful situations, showing us how to be resilient, strong and brave as she faces things that would make grown adults crumble.
Tomorrow morning, as the sun is rising the three of us will head back to Dana Farber for her first treatment. We should be in and out in just a few hours, and as far as clinical trials go, this is the least invasive, involving just two injections. She will have to get some blood drawn, a common occurrence for Lea these days, and have an IV put in, just in case she has a negative reaction. We will be returning to Dana Farber every three weeks as long as Lea is showing signs of improvement. If not, she will stop the trial and I don’t want to think about what happens after that.
My life today is completely different. My days are different in every way, and we spend way too much time in hospitals. As we pack up the Halloween decorations I wonder if this will be our last with Lea. I used to escape to work, now I can’t wait to get home to hug them and smell them (I think that is a mom thing). Things that used to make me angry now just roll off my back and seem so trivial and small. I find myself wanting to be surrounded by friends and family all of the time, but can’t stand small talk with strangers or acquaintances, something I used to enjoy. I savor every day, every moment, every kiss, every hug, and every “I Love You.” I realize how much people and experiences matter… so much more than they did before August 10th. While I am grateful for this newfound perspective on life, I wish it could have come about in a way that did not involve my kid getting the worst form of cancer… and I so wish our lives could go back to the way they were on August 9.
We have a Facebook page for Lea now and you can find it here.
You can purchase one of Lea’s owl tees from now until November 26 here
This Sunday, November 12 I will lace up my running sneakers from the first time in a long while for the best cause, Lea. You can learn more about this 5K and register here.
For Our Prayer Warriors:
Please pray that Lea tolerates the treatment well and the tumor starts to shrink because of it.
Please pray that Lea is the first of many children to be cured from the DIPG monster.
Please pray for peace for Mike and I as we navigate the unknown.
Please pray for Livia and Keira as their life is changing as well.