I walked down the stairs and found my mom curled up in the chair of our living room, as I usually do on weekday mornings. This morning I could tell something was different. “Grandma died last night.” We all knew this was coming, it was no shock or surprise, but I still shed tears for a woman I have known and loved my whole life. She was my last living grandparent, a fiery, feisty spitfire who took no S***, made the best ham and cheese sandwiches around, and we loved her.
We look at pictures of “GG” on my mom’s iPhone and I whisper, barely able to get the words out “This is how you are supposed die. At 94 after living a long and full life.”
Things affect me very differently these days. My perspective is forever changed. So much sadness and sorrow has been “used up” on my own situation, I have little left for others. I am sad about my grandmother, but not like I would have been three months ago. She was ready to go. She chose it. She had stopped eating and drinking and was ready to leave this earth. She had done her part and left her mark.
Much unlike my amazing six year old, who later that same day finished up radiation. 30/30 treatments done. Bittersweet. The amazing team at Smilow had a poster for her, gifts, donuts, and cards, she rang the “gong” and I sobbed. I didn’t want it to end. I know what usually comes next for DIPG kids and their families.
We sit and chat with her radiation oncologist and I find out it’s a miracle she is doing so well. Based on her MRI he had concerns she wouldn’t make it through radiation, something I am so glad I was blissfully unaware of.
We return home gifts and balloons in tow, telling her we have a break from hospitals and doctors and gear up for our upcoming trip to Florida.
Thursday keeps building speed as we find out the “exciting” immunotherapy clinical trial (their words not mine) we want to enroll her in opened a site in Boston at Dana Farber and has one spot left. And can we travel to Boston for 8:30am the next day? And can we get a MRI and blood work ASAP to secure the one spot left? And when is the funeral? And when will I pack? And what about my other two kids? And I have to work… And it feels like the world is going one million miles an hour and I am caught in the middle.
My head hurts.
It takes a village and we have an amazing one. We manage to find drop off, pick-ups, playdates and early morning sitters and we drive to Boston to meet with the research team. DIPG has essentially no survival rate, with only 1% of patients surviving five years after diagnosis. “Patients” all being children.
I sit in this room simmering in my anger and fear. My kid is going to be used as an experiment, and there is nothing I can do about it. A clinical trial our only hope, as there is no cure. I cling to the words of my dear friends “This could work, and Lea could be the first.” Then the doctor tells me something I have never heard before… that she had a patient 15 years ago and the clinical trial worked for her. Today, she is alive and well, and that could be Lea. I glimmer of hope is sparked inside and I plead with God to allow Lea to be the first child saved by this “experiment.” They thoroughly review the twenty plus page document with us and I feel panic creeping in. I hate this. I hate this. I hate my life. I feel tired and ragged at the edges, with a long road ahead.
We need an MRI and blood work in order to secure the spot and Yale pulls through, giving us a 7am appointment just three days away.
Lea is the champ she always is and takes another day at the hospital in stride. We’ve done this before, we know the drill. Then, they take us back into the room where we will wait. The room looks all too familiar and then I realize it is the same room we were told Lea has an inoperable brain tumor unlike anything our neurosurgeon had ever seen. Mike and I make eye contact, mine are already filling up, he let’s out a sigh. I replay that moment over and over in my head all the time…that room haunting my thoughts. Being back there felt so uncomfortable and I want to escape it all.
The day before our nightmare began Lea and I had a conversation on the couch in our living room after throwing her bike on the ground and screaming “I can’t ride that thing anymore!” My concern for her balance and behavior was growing and I wanted to hear her side.
Lea, how are you feeling? Tell mommy what is going on? I need to know what is going on so I can help you.
I don’t feel like Lea. I feel like there is a monster in my brain and it is trying to kill me….crocodile tears flowing down her perfect cheeks.
I think back to that conversation frequently. She knew exactly what was happening to her. Monster is a word regularly used to describe DIPG by the parents of the children it hurts and the families it rips apart.
Lea is brave, strong, fearless and defiant. She always has been. Since day one. If there is any child on earth that can battle a monster and win, it is Lea.
While I don’t believe in monsters, I do believe in miracles, I believe in the power of prayer, I believe in a mighty God, and I believe in Lea.
Tuesday night at my Grandmother’s wake I spoke with several of our “prayer warriors.” I was moved to tears by one woman who told me she has the “night shift,” which means she sets her alarm every night, while we are sleeping, and prays for Lea and our family. I had no idea people were praying for us around the clock, but I can certainly feel your prayers and God’s peace… around the clock. There have been moments in the middle of the night when I wake up with my thoughts humming and my heart heavy. I pray for peace and so quickly get it, drifting back to sleep. This is prayer in action and I am so grateful for you warriors.
Today we are in Lea’s favorite place, Naples, Florida. On our way back from the pool where Lea swam and dove, weightless and independent in the water, we get the call that the last spot in the clinical trial is hers, another small miracle as we battle this monster.
- That our time away is filled with joy, happiness and some restoration.
- That the radiation starts to work and Lea’s tumor shrinks and by God’s hand never returns.
- That Lea is the first child of many to receive a “cure” from this clinical trial.
- That we receive wisdom and guidance as we continue to have to make difficult decisions for Lea’s care.
- That we receive patience in dealing with our other two children who are feeling the effects of this on our family.