Brides and Braids

Christa Doran Uncategorized 3 Comments

There’s my bride! Mike jokingly exclaimed as I entered “his side” of our gym early Saturday morning.

Oh yea, today is our anniversary… I mumbled as the athletes in the room clapped for us and Mike made another joke about the past eleven years being all rainbows and bliss.

Eleven years ago I stood on the alter in my satin gown and sheer veil and said the words “in sickness and in health… in good times and bad….” We repeated the words in front of our family and friends, not fulling taking in their meaning.

We had thought about our lives together and what we had “planned” it would look like…house, dog, kid, another kid, and surprise… one more. When you say those vows you have no idea what you will actually face together. Or at least, we didn’t. 

Situations like ours sometimes rip families apart. This has brought Mike and I closer than ever and forced two independent people to lean on each other for support and join together as a team. I couldn’t imagine going through something like this without him. Eleven years in I am so thankful for Mike and as our relationship grows, changes and we weather life’s most terrible storms, I know I made the right choice in marrying him. 

Let’s go out to eat. 

I don’t want to. Two sadsacks at dinner? No thanks. Pass.

In the end, Mike wins and we end up planning to go to Geronimos, as at least I know I can get a much needed pitcher of margarita. Yes, a pitcher.

In preparation for our night out I give Lea a bath and get her ready for bed, brushing her thick wavy hair, which is ready to be woven into her two signature braids. 

Her gorgeous hair starts coming out in fistfuls as I brush it and the tears start to flow down my cheeks. They told us this would happen, but I wasn’t prepared for what it would actually feel like, something I am all too familiar with throughout this experience. It never feels the way you think it will. 

She continues to lose more and more hair and today she is mostly bald from her ears down, forcing me to very creatively french braid her hair every day. I refuse tell her about any of this. She can’t see the back of her head and I would prefer she remains ignorant to her situation, able to soak up all that is good in her world and enjoy her life. 

A few nights ago Liv saw the large white bald spots that now are permanent reminders of this situation. My eyes grew wide and I pressed my finger to my mouth urgently so she wouldn’t say anything in Lea’s presence. 

We sit in the playroom and chat after about Lea, the cancer, the light medicine, her hair loss and then she asks me the question… Is Lea going to die? I tell her that we don’t know, only God knows the future. God could perform a miracle and heal her, or they might discover a treatment that can help her…. pause…but most kids with Lea’s condition do die. I start to cry and Liv hugs me tight. It’s ok to cry mom she tells me, wise beyond her years and so kind. I know Liv. I have cried a lot and I am sure I will cry more. 

I can feel your prayers at work. This week I feel stronger with less anger, less sadness. I am at peace, able to find joy and happiness much easier than in past weeks. I don’t run and hide when I see someone I know out in public, I actually say hello and engage. Many times they don’t know what to say, or do, or how to act, and that is ok. That is another blog I will write someday soon.

Through all this loss we have gained so much and grown in new ways. We have gained perspective and now see life through a new lens. We have gained a closer knit family and stronger relationships with our friends, who we have seen more in the past month than we have in the past year. We work less. We are more present. We have a new respect for one another. We realize how fragile life is and navigate through it with a new appreciation.

Lea is tolerating radiation really well and for the second week in a row they have dropped her steroid dose. She is still unable to walk on her own and her vision is still blurry, but she is acting more like herself each day, a gift far greater than a full head of hair or being able to walk independently (in my opinion.) 

The doctor excitedly reminds us that we only have 10 days of radiation left. I tell him I don’t want radiation to end. I wish radiation could go on forever. This is the easy part. The tumor is shrinking, which means more and more of Lea come back each week. She is happy and enjoying life, teaching us new lessons on how to be brave and what is truly important each day. 

Every time I think ahead to the future and what that might look like I stop myself and quickly push those thoughts and emotions away as I know it prevents me from living in and enjoying the now. And right now, I am at peace, happy to have our girl a few steps away, sleeping on the couch as my mom reads her a book. 

Follow me on Instagram to see how we are finding joy and view Lea’s latest art creations.

Now on my blog is a gallery of Lea’s art as well as a list of upcoming fundraisers for Lea. 

 

Salty

Christa Doran Uncategorized 26 Comments

My salty tears matched that of the salty water, just steps away from my feet on what looked like a perfect weekend. 

If you didn’t know our current situation, one might glance at the picture above and only see the amazing landscape, beautiful sunshine, salt water, good wine, plentiful food and loving family. Now all I see is a family that is hurting, and figuring out how to navigate the unimaginable, one day at a time.

In the past, a weekend like the one above would have been perfect. Now… it is painful. I am finding it so incredibly hard to be happy. The peaceful setting allowed too much time for my mind to race, thoughts to creep in, and stories to build in our heads.

Surrounded by family and a friend I was drowning in my sorrow for our current situation. One for which there is no life raft, flotation device, or rescue. How I wish I could save her. How I wish ANYONE could save her, or knew how to… but at this point, even the best and brilliant are just guessing. Still so much confusion over this disease that steals our future, and breaks my heart. 

I ride my emotions like some ride the waves, up and down… many times crashing on the shore only to feel washed away in the end. Every day is new emotional adventure, something that takes so much out of a person. 

Flipping through Mike’s phone I stumble across a video of Lea, sweetly singing “Oh Mr. Sun, Sun, Mr. Golden Sun, please shine down on me!…” Her face was as bright as the sun she sang about. The tumor had not yet taken her body and spirit from us. I want to smash his phone in pieces as this video throws me back down into the dark place I often go, angry at the world, pleading with God, feeling again, like I am stuck in a nightmare from which I can’t wake up.

Mike and I sit in the dark and talk about the possible clinical trials and experimental treatments available for Lea. All would take us out of state, some out of country, and some costing upwards of $150,000 out of pocket.  These discussions make me sick to my stomach every time. I treat these discussions like I treat the grocery store, get in, get what you need, get out. Mike has been bearing the burden of researching and studying and asking all the questions, something I am so grateful for. We have a lot of options, and will soon have to make some difficult decisions. 

“I hope this doesn’t change me.” I tell him flatly.  

He replies “How can it not change you?”

“No, I mean I hope it doesn’t turn me bad. How do you come back from burying a child? I know people live through it, but how?” I sob, and I pray, like I always do when the earth feels like it is spinning out of control under my feet. I ask for peace for now, and for later. I pray for a miracle, but I ask for peace for any outcome. And I get it. 

Sitting in the sunshine the morning after, eyes still puffy from the tears, a dagger pierces my heart when Lea says to Mike “when I am 30 you will be like 90 Daddy!” I quickly go inside as I don’t want her to see me fight back the sobs. Salt in my wound.

I drive home from the picturesque weekend with a frown on my face to prepare for a candle lighting in honor of Lea and my family. I go back and forth between going and staying home, only to decide in the end to attend.

Sitting in the back of the chapel I look around through wet eyes and count close to 100 people. One hundred people showed up to pray, light candles and show how much the love and care for us.

Three things are getting us through each day, family, faith and friends. All are on display here in this room and I can feel the love. I feel the peace I have been praying for and an hour later I drive home in silence to Lea, who is perched at the kitchen island like she often is, coloring a beautiful picture for me. 

Today is a new day. It is a better day. Tomorrow we hit the halfway point for radiation, something I have mixed emotions about. Radiation means (most of the time) the tumor shrinks. Radiation means (most of the time) symptoms disappear. Only to return. Who knows when. I feel like we are on a timer. I feel like radiation is a tease, something that we can only do once, that will make her better, but only for a short time unless God answers our prayers for a miracle and keeps that tumor from growing.

It’s Wednesday which means art class. She paints, draws and sketches, while I blog just a few feet away. She is so happy in her creative element, unaware of what is happening to her body. Today I will be grateful for that.

One of the many things this has shown me is how fragile life is. So wear the fancy shoes, carry the expensive handbag, burn that special candle, use your best china, say yes to dinners with your friends, tell your family you love them, go on that vacation, and be present in this amazing gift called life. 

Stolen Joy

Christa Doran Uncategorized 7 Comments

Today, the weather matched my mood. Gray and stormy, with the occasional rain shower.

Last night I was searching for an “official” explanation for DIPG and below it several questions were listed.

What is the survival rate for DIPG?

Don’t click it. You don’t want to read that.

Click. Scan. Gut drop.

2%.

98% of kids with DIPG die within one year of diagnosis.

I know these statistics, but every time I see it, or hear of another child who is no longer on this earth because of it, I feel a wave of nausea fill my body.

In order to make these days joyful for Lea, myself, and for the rest of my family, I am living in denial. Choosing not to think ahead, I am taking this all one day at a time, praying for a miracle, medical or God given, every day.

Keira started preschool today. We have had at least one child at this school since 2011, and I know the starting routine well.

Send in medical records. Send in parent packet. List all important numbers and any allergies. Tell me about your child. Complete family photo collage to display at school in child’s cubby.

That last one is the one that started the waterworks this morning. Moments before we were supposed to be loaded into the car, happily driving to preschool, I was angrily cutting photos of my “perfect” family, all taken before this nightmare began. I ripped the clear tape from the dispenser, angry that I had to look at these photos. Photos that serve as a reminder of all we have lost.

There she was, staring back at me. My joyful girl, lighting up each and every photo with her bright smile, sparkling eyes and amazing personality. When people have asked me to describe Lea in the past, joyful was always the word I used. Although she was my most painful birth, she was my easiest baby. Happy from day one, she was always smiling, her big cheeks and bright smile brought joy to anyone around her in a ten foot radius.

She is not that girl anymore. My joyful Lea is already gone… the sparkle that was once in her eyes started to fade when the tumor started to grow in her brain.

When I look at the last family photo taken on our last “normal” family trip I can see that the tumor had already invaded Lea’s body. Her eyes don’t have the same sparkle they once did. She was already starting to change during that week on the beach in Rhode Island. For a few weeks something had been “off.” Mike and I would worriedly discuss her behavior, her short temper, occasional loss of balance, and the fact that the joy and light in her eyes seemed to have left her. Maybe she is sick…Maybe she has a virus… Maybe she is going through a developmental stage…Maybe she needs more intellectual stimulation…

I often wonder how long this evil disease has been in her body, stealing our girl and her joy.

I feel like I didn’t enjoy her and her joy as much as I should have. Consumed with work, and life, the stress I felt as a mom of three, and the daily “problems” I struggled with that now seem insignificant and small compared to all of this. I wasn’t fully engaged enough.

But I can’t go back. I can only forge on, treating myself with kindness, knowing I did the best I could for where I was. I am a different woman now, and I will never do things as I did them before. Everything looks different to me now.

As I type this, Lea is sitting at a large desk covered with ivory linen, doing one of her favorite things, art. Today we checked off number 22 on the radiation calendar. That means 22 more sessions until we are done with this part of her journey. Her fine motor skills have improved a lot in three weeks and she can now draw and paint again. Today she is painting one of her favorite animals, the owl.

The rain has stopped along with my tears and today I find joy in art, and owls, and having my girl just a few steps away.

See Lea’s owl and our daily joy on Instagram

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.