Monsters & Miracles

Christa Doran Uncategorized 21 Comments

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.

Please pray:

  •  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.

Comments 21

  1. I’m so sorry for the loss of your GG. I must say your strength getting through all of this is truly admirable and has made me think about things I’ve made big things but really in all retrospect, they little things; some of them very little and unimportant things. Thinking of your family always <3

  2. Christa, I am a friend of your mothers from Hope. I joined your pages so I know exactly what I need to pray for. I’m going in hard and powerful in deep prayer for all your specific requests at this time. I don’t have any words to soothe or comfort, but I can pray. Your mom taught me how to pray 4 years ago….she showed me that miracles do happen through prayer.
    Sincerely, Natalie Avery

  3. Please consider the intraarterial treatment in Mexico. It seems like you have a large support group and fundraising… it is the closest thing to a cure for DIPG. Not saying this may not work but I’ve followed dozens upon dozens of DIPG kids in the past few years and Mexico is giving the most hope and best results. I know many people are afraid of leaving the country but the US is so taped up and behind… in places like Mexico doctors have more freedom and less restriction though the costs are high in price. Please consider this option… the US trials cannot compare.

    1. Christs I I know you probably don’t remember me but I grew up in Springfield and remember you and your family well. There are several people in my church praying for your daughter. I also wanted to say something about Mexico. I know it sounds crazy but my uncle actually went there for treatment for his cancer after doing tons of research. Like the previous person said above there are many people from around the world that travel there for treatment. There are treatments there that are just not ever going to be allowed here sadly because drug companies really control what’s allowed here.

    2. Alana is right. I know Mexico sounds scary but few Americans even know there are other options. If you have time to read, Ty Bollinger helped me understand why the U.S. is so far behind.

      We just got back from a family trip to Florida this week too. The pool area of the home we rented had a circa 1990’s decorative owl perched on top of a little waterfall area near a potted plant. I was stunned at how similar it looked to Lea’s classic brown and yellow owl. Toward the end of our week stay I noticed one of the eyes flickered on one evening. Maybe one of my boys kicked the solar panel into position? Maybe that was the day you got into the Dana Farber trial? I read about the Boston center the day Kristen shared your news. I hoped one day you would make it there. I’ve also been hoping you open up to reiki, energy healing, and alternative medicine. Sounds like you are on the right path and it feels like your mind is opening. Very glad 🙂

      I’ve never stopped thinking about Lea because I know about creative types. They have a persistent, unstoppable fire. It’s clear you as parents have unique energy. Paired with the village of support you now seem to be harnessing gives me chills I’ve always felt since the summer knowing God is guiding you, helping you find the pieces of the puzzle one at a time … only the pieces you need when you need it.

      Xo

  4. You and your family are so strong – and part of that strength is looking right at the thing you most fear, and moving through it – sending love and the deepest hopes that immunotherapy will work.

  5. I haven’t prayed with a purpose for a long while now. Occasionally when I try, I tend to loose focus almost as soon as I start and the experience seems to quickly unravel. I will begin to pray for your amazing daughter and you and your family. I just know that with this new effort and intention I will find success. I will focus on the needs that you have outlined and if it’s ok, I’ll ask others to pray as well. I am in awe of lea’s and your strength. Good job mom. I’m starting now.

  6. I have been inspired by you since I met you, before this monster was discovered. And I am further inspired by Lea’s strength and the spark of hope you have shared here with us. My prayers for Lea and for your family are continuous. My God is powerful and he hears our prayers.

  7. I am Cori Kovac’s aunt and a friend of Jen. I have been praying everyday for your family and always Lea. I will continue to pray for Gods blessings and miracles. May your time in Florida be all you wish for and may it be filled with peace, happiness and all the love your hearts can hold.

  8. I’m a friend of your mom and dad’s from Hope church. I pray for Lea and all of you every day. Much love and continued prayers.

  9. Please know you are all in my prayers. My husband had throat cancer and very little chance of survival. One day as I sat in my car crying I felt I needed to go to bed bath and beyond. I was crying in my car so my husband would not see me. I drove to the store and in the parking lot I prayed for God to tell me if my husband would live or die but to tell me in Gods words so I would know it was a sign. I went into the store. A friend walked in. I told him of my husband’s stage 4 throat cancer. He got his wallet out and handed me a tiny piece of paper. On it wasbtyped psalm 118:17
    I will not die but live to proclaim Gods what God has done.
    I am praying for your daughter this same miracle. God is there for you. God can do anything. His will be done.
    Miracles do happen.
    I am asking God to heal her.
    Amen

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