“What can I get you to drink?”
“I’ll have a wine… actually, I’ll have a vodka soda please.” Something stronger, to numb the pain… I thought to myself as we sat at dinner, just ten minutes after finding out Lea’s tumor is growing. “Progressing,” as they call it.
As a strength coach, I use the word progress a lot. Progress in my world is good thing, it is what we live for as coaches. We help athletes grow, become more, and get better. We help them make progress. Now, I hate that word and want to strike it from my vocabulary. And from my mind.
The words tumor progression rang loudly over and over in my head and the constant flow of tears stung my already bloodshot eyes. I found myself burying my head in Lea’s neck to give her kisses, and to keep her from seeing my eyes, which told a story I didn’t want her to know.
If you are a parent, and you have ever been unable to find your child, you know the feeling I have in my body far too frequently since August 16. That pit in your stomach, I might throw up, swallowed by panic feeling. I get that feeling every time Lea is not doing well, any time the news of her tumor is not good, or any time we do something that might be “for the last time with Lea.” Like the very next day when they explain how the space that houses the fluid around her brain (cerebrospinal fluid) is getting smaller. This can lead to something called hydrocephalus, where the extra fluid has no where to exit and builds up in her brain. It means she will eventually need a shunt implanted to drain the fluid. Another surgery. Another procedure. Another step closer to the end.
And so we wait, feeling helpless yet again, and watch, and do another MRI in a few weeks to see what is changing… if there is any further “progression” and what this all means for Lea.
Last week I noticed we hadn’t measured the girls in a while. “Lea! Want me to see how tall you are?” I yell out as she excitedly backs up to the wooden measuring stick hanging on the wall in our hallway. I feel the pit in my stomach when I realize the last time we had measured her was in June. Right before the monster was discovered. Another pit when I realize she has not grown. Not even one bit. When Lea realizes this she starts to cry, asking me why she hasn’t grown. “Is it my medicine?” she asks. I choke back tears as I tell her it could be the tumor in her brain.
Lea tells me she just wants to be able to pull her own suitcase through the airport. And can we go back to Florida when her cheeks are not so big from her medicine? Such simple requests. I can’t begin to imagine how hard this all must be for her. Her independence was robbed from her by DIPG, and that is just the start.
Every month the pit comes back again when I count the months on my fingers. Six months since diagnosis. Six months since we were told “two weeks to nine months to live…”
Mike and I often discuss if it would be easier to lose a child suddenly, or know for months you are going to lose them, like us, and all the other DIPG parents suffering through this awful diagnosis. These are the messed up conversations we now have at night on our oversized sofa, which was purchased years ago so that all five us us can fit comfortably. After some thought I choose the later. I told him through sobs that of I had lost Lea living the way I was six months ago, I would have lived with regret for the rest of my life. Lea and I now have a special relationship. We spend a lot of time together playing memory, going to the movies, cuddling on the couch, being silly, and chatting about everything and anything. My family now comes first, far before my business and my work, just as it should, but not as it was.
The most important and valuable things we have in our lives are our relationships. It seems the only way we learn their true value is when we stand to lose them, or when they are taken from us.
I had one blissful week without the pit. We spent the past week in our favorite place, Naples, Florida. A trip we were unsure we would make it to, or through. Armed with a list of hospitals and an ok from our team we decided to take the trip, and I am so glad we did. We had a blissful week swimming, soaking in the warmth, and truly enjoying each other.
Last night Mike and I sat hand in hand at Lea’s favorite restaurant in Naples, Tommy Bahamas. Our eyes were glossy as we looked at Lea, coloring sweetly as she waited for her mac and cheese to arrive. We were both thinking the same thing. Was this her last time here? Was this the last time here for our family of five? Or anywhere for that matter?
It feels as though we have this dark secret. We splash and smile, drinks in hand. We dine and dance and take happy photographs. We hide our pain as we try and soak up every sweet moment possible.
The pit came back as we were pulling out of the resort. I looked back at all three of my girls, buckled into their seats as they said goodbye to Naples, and I said goodbye to my pit free body.
On the way to the airport I check in with another family who is living the same nightmare. I scroll the blog, which is eerily similar to my own, and find this…. I’m learning that when God says, “My grace is sufficient,” that doesn’t only mean some inner peace or acceptance of the lot we’ve been given, it really means in a concrete way that God’s people will show up with handfuls of grace. A card, a gift, a hug and a sympathetic tear. A trip to Florida, a house more suited for the challenge. These are all graces that help us know we’ve not been abandoned by our Savior.”
Update on Lea: Lea’s progression was not enough to disqualify her for the clinical trial, so for now, we will continue to visit Dana Farber every three weeks. She is back on steroids and they are helping with the symptoms we were seeing. For the most part she is the same. No better. Not much worse. We will have another MRI beginning of March. Our next visit to Boston is Friday and this will be treatment number six.
Thank you for the blue lights that shine brightly all around Hamden. When I see them, even though I have no idea who lives there I think “they got us.” We are so grateful for your continued support. This community continues to blow us away and we are so thankful for you all.
Monday, February 19 from 3-6pm there will be a fundraiser at the Clay Date in New Haven.
February 22 from 10:30-12 there is a Yoga Fundraiser at Your Community Yoga Center in Hamden.