Missed Trips & Finding Joy

Christa Doran Uncategorized 8 Comments

My fingertips glided along the mouse of my MacBook Air as I scanned the long list of emails that filled my inbox. What did I miss…. I asked myself as I went back to the date before this awful journey began. The past (almost) month has been quite a blur. Combine that with receiving the most emails, texts and social media messages I ever have, and I know I was bound to miss something important. And then, it caught my eye… the itinerary confirmation for our family “girls” trip to Spain. We were supposed to leave today.

I quickly smashed my finger on the delete button, as if that would help make me feel better. Smilow instead of Spain. I wanted to scream. Or punch something. Or finally wake up from this nightmare.

The “girls” in my family have been planning this trip since there was snow on the ground, excited to see Majorca as a few generations of “Pellegrino” women and enjoy seven whole days together, no husbands, no kids.

Ok. Forget about it. Not an option. Moving on.

Just minutes later I penciled something in my planner (yes, I still use a pencil and paper planner. Stop judging me.) and saw the SPAIN imprinted in the pages. I had tried to erase it as best I could, but it was still there, taunting me.

This weekend we had three glorious days off from radiation. (Thank you Labor Day.) We worked, played, visited with friends, and I smiled more than I have in a while. Something I wondered if I would ever do again. There were moments where life actually felt normal. Lea is back in her own bed. We borrowed a friend and neighbors video monitor, something I never though I would use again. We put rails up around her mattress, again, something I never thought I would use again. And for the first time in a month, I slept next to Mike, not Lea. It felt strange. I slept terribly, waking up every hour or so to check the monitor, the bright screen blinding me as I had it on the highest setting, not wanting to miss any of her sounds or movements. I missed having her face next to mine, easily accessible for kisses at various hours during the night, or to smell her forehead, as I find myself doing a lot these days.

Although every day brings new challenges and new frustrations, I am working hard to find joy in every day. Some days it is harder than others, but what I realized is that joy can be found everywhere, we just have to look for it.

To see how our family is finding joy, follow me on Instagram.

 

Doing Hard Jobs

Christa Doran Uncategorized 24 Comments

Yesterday Lea completed week one of radiation, or as Cara, the child life specialist calls it, one of her “hard jobs”. This was the same day she should have been starting first grade.

I didn’t think it would be a big deal for me, I know how to be strong, and Liv needed her parents excited on her first day of third grade.

We filed into school, behind the sea of colorful backpacks and excited smiles and I could feel the tears welling up as we passed Lea’s classroom.  I quickly maneuvered past the parents, avoiding eye contact, and up the stairs we marched, to third grade.

Hold it together Christa, Liv needs you… Be strong for Liv…. You can be strong for Liv… I repeated over and over in my head.

I could see the concerned and sad glances being shot in our direction. A few gave warm hugs, offered their help and words of kindness, and once again I forced the tears back down. Not now Christa, I told myself again.

We colored at a large wooden table with Liv, the brightly colored pencils new and sharp as they had not yet been worn down, a feeling I was unfamiliar with at this point in time.

Then it was time to go. I could feel the tears brimming in my eyes, unable to be held back for much longer. I raced down the stairs and out the front door into the sunshine and let them fall. I was sad Lea is not able to be with her friends and experience all first grade has to offer her. I was angry about our daily visits to Smilow Cancer Hospital, rather than a school, where children belong. Instead of fitness and art, Lea gets daily radiation and weekly blood draws. No part of this is right, or fair, and once again I found myself standing in anger and sadness.

I had my moment. I let it all pour out. And then I pulled myself together and headed to work, where I was provided an excellent distraction for two hours.

Today is a better day. We checked off day 7/30 on Lea’s “Moana” radiation calendar. I have mixed feelings about Moana after watching it four times a day when Lea was in the PICU. I will never look at that movie the same way. It takes me back to a place I never want to revisit, but it is the music Lea has chosen to listen to during her “light medicine.”

Lea amazes me with her strength and bravery. She gives me strength. She has quickly taught me what is important in life.

I sobbed softy as I told her how brave and strong she was after she did her “two hard jobs” of radiation and a blood draw yesterday. I told her how very glad I was that I got to be her momma. Then the elevator doors opened and we left a place we have become all too familiar with.

Today she is here with us, and I will celebrate that. I am doing my best to find joy in the  every day things that now fill our days.

Last night I looked over at her sleeping next to me, and from the side, she looked exactly as she did before this all began. You couldn’t tell that her face and belly were now puffy and round from all the steroids. You couldn’t see that her eyes were crossed. And just like I do every night, in the middle of the night,  I kissed her sweet face. And just like she does every night, her eyes opened a wee bit, a smile crossed her face and she whispers “I love you Mamma.” And for a moment, all is right in our world.

 

 

 

 

Angry

Christa Doran Uncategorized 27 Comments

I rode the wave for as long as it would last. I wrote, I coached, I laughed and I smiled, and then it came crashing down on me and I sat once again in my anger and sadness.

Anger over the fact that my Lea is not the same joyful girl with sparkling eyes. Anger over the fact that she can’t run with her friends, or ride bikes, or enjoy life like she used to. Anger over the fact that there is no cure. Anger over the fact that six weeks of radiation will get our kid back to normal (so they say), only to have this tumor return unless God decides to intervene. Anger over the fact that I have no idea if this will be her last Christmas, or if she will even make it until then. Anger over the fact that a sickness like this exists and every day people, and children, and my child, suffer because of it.

Lea was a champ at her second radiation treatment on Friday. She got right up on the large white table sitting in the middle of this massive, dimly lit room, the paper covering crunching under her body. She allowed them to strap her “mask” over her face without protest as my eyes filled up with tears (again) at the sight of what is happening around us, feeling again, totally out of control. Then we have to leave the room as her “light medicine” does its job. The first time we did this I was not ok. Mike and Cara (our child life specialist) were there to help me through it. Yesterday it was Mike’s turn, and I was able to be strong for him. We have come together as a united force there to help each other. So far, one of us has always been able to be strong for the other.

I allow the feelings in. I let them swirl and sit. I let the tears fall. I pray for strength and peace to survive the unknown with grace. And I clean, as I often do to regain some sense of control.

Hearing other families stories is not helpful to me. I prefer to live in ignorance right now, and take this one day and one obstacle at a time. I don’t want to map out the future or think ahead even one week.

We will not allow Lea to suffer on this earth for our own selfish desires. When, and if it is time, we will ask God to take her. We will let her go, knowing we will see her again in heaven where there is no sickness, and no death. We will pray for peace to get us through something no one should have to endure.

Why us?

Christa Doran Uncategorized 34 Comments

Pediatric cancer.

Two words that should never go together.

I looked around the waiting room filled with other kids effected by this horrible disease. My eyes kept filling up with tears thinking about all they are going through. All Lea is going through. This is not fair. I hate this. Why us? Why? This can’t be happening…

Those phrases echo in my brain a lot these days.

Lea started radiation today. Exactly two weeks after our lives were forever changed. We will never be the same. We have endured things no one should, but many have. We have heard the worst news imaginable delivered to us in a small windowless room on the 7th floor of Yale, surrounded by (mostly) strangers. And because of it all, we will never look at things the same way. We have a new perspective on what is important in life and what truly matters and we are completely different people than we were just two weeks ago.

Much of the time this all feels like a bad dream that I will wake up from. But don’t.

Many have asked “how are you doing?” My standard response is to shrug my shoulders, part indifference, part defiance, as I don’t want to answer that question. “As bad as I have ever been in my life” is not the response they are looking for, but I don’t care.

My emotions have ridden a horrible roller coaster over the past fourteen days. There have been a few moments of joy and laughter sprinkled in between waves of anger, sadness, frustration, being completely overwhelmed, and sorrow.

Tragedy brings people together. We have seen this happen instantly before our eyes. My parents have moved in and we are living together again, something I never thought would happen, but I am so enjoying it. We are so grateful we have this big house, which we always thought was too big, but now we realize why we have it. My sister visits almost daily. We are so grateful she lives close. Our Tuff Girl and FMA community has been flooding us with emails of support, offering up contacts, connections, knowledge and expertise. Our fridge is filled with food. Our floor is covered with gifts. Our table is covered with notes of strength and support. Pretty amazing to have all these friendships, all these contacts, and this big, strong, incredible community, seeing as we moved here ten years ago and didn’t know one person.

Our strength has come from the support of these incredible people, and from our faith in a mighty God. And while we don’t understand the why, we know He will guide us through it. I have begged, bartered and pleaded with God for a miracle, and also asked Him to help us get through and make peace with what might be.

Many of you have asked what you can do. We know you want to help and we are so grateful for that. Right now, we have everything we need. We will be doing some fundraising soon and I will be sure to announce that loud and clear when we know more details.

Thank you for your prayers, texts, emails, cards, gifts, food, and friendship. We are so grateful to have such amazing people in our lives.

I will keep you updated here as I can.

Love,

Christa

Never the Same

Christa Doran Uncategorized 1 Comment

Thursday, August 10: Our lives changed forever
After Lea’s balance and coordination became significantly impaired over the last few days (among other very concerning things) we took her to our doctor who suggested we go right to the Yale ER for tests.
Lea went in for a MRI on Thursday, which showed an inoperable brain tumor.
Friday Lea had surgery to biopsy her brain to determine exactly what we are dealing with so we know how to treat it.
She has been through so much over the past few days and is truly the most brave girl we know.
Wednesday, August 16: The unimaginable
Thank you for your continued support and prayers. They are the only things getting us through the past week.
We wish we were delivering better news to you today. Yesterday we met with the team who told us Lea has a high grade gleoma called DIPG. This is very rare and only about 300 cases across the country each year. There is no known cure for this tumor and it is fatal.
While chemotherapy is not an option for this type of tumor, we are moving forward with radiation in hopes of some short term symptom improvement and to buy us some time with this amazing girl. Radiation will run for about 6 weeks at which time we will look to experimental, clinical trails for hope.
There are various clinical trails around the country trying to find treatment options for this type of tumor. None have shown long term success, but what is being learned through these trials provide hope that a treatment can be found.
Right now we are taking it one day at a time and enjoying every minute we get to spend with Lea.
We are praying for a miracle, but also making peace with our situation
Please continue to keep our family and Lea in your prayers.
Our faith is still in a mighty God. We know He has a plan for our lives and we trust in Him, yes even now, even with this.
The outpouring of love and support has been incredible. The Tuff Girl/FMA community mobilized and we feel so loved and supported by you all. We can not express with words how much your support and prayers mean to us.
We will be returning to the gym probably sometime next week and we need you there. We need to see your strength and power. We need your hugs and hi-fives. We need you.
Please understand that we cannot discuss details of this situation at the gym. We need to draw on your strength as you do from us.
This past week has certainly provided perspective on what is truly important in life.