Stranger Things & Finding Good.

Christa Doran Uncategorized 3 Comments

The Netflix hit with the cult following Stranger Things has become an excellent distraction over the past two weeks. Tuesday night I needed just that as the start of Lea’s clinical trial was looming the next morning. With only two episodes to go on season one (yes, I am late to the game) I cozied up on the coach with a glass of red to binge and veg. “You know his daughter dies, right?” “Yes I know.”  “Ok, well they show it in this episode so get ready” Mike warns me, fully aware I hate being scared, I hate gore, and can’t stomach any sort of human suffering. I will watch through my blanket like I do all the “scary” scenes with monsters and gore.

If you have seen the last episode of season one you might remember seeing Hoppers daughter die. Or maybe you don’t… but it is all I can remember from this episode. As the scene of his daughter dying from cancer flashes on the screen I start sobbing and scream “she dies from F****** cancer!?!?” Mike fumbles with the remote as he quickly tries to fast forward to a less horrifying scene. You know, like a monster eating humans, or people’s heads imploding… something less close to home.

The sun is shining as we head to Dana Farber the next morning, Lea is happily strapped into the back, her new travel DVD player flashing one of her favorite movies, Pippi Longstocking.

A bad accident re-routes us and we end up driving through a neighborhood in Framingham, MA. “This is the town Devin was from” I tell Mike as we weave through the roads. And then I start to see them… trees wrapped in green ribbon, green #whynotdevin signs nailed to the old trees that line the the winding road, and lastly, a banner hung over the front door of one home reading “Defeat DIPG.” Strange irony as we head to Dana Farber for our first treatment on a clinical trial for DIPG, a rare form of brain cancer that most are not even aware exists (despite it killing hundreds of children each year… close to 400 just in the US alone. Consider what would be done if something else was killing our future… like a safety law or a toy or food. Just consider.)

I learn that day that too many children have cancer. I learn that Lea has a even more aggressive form of DIPG, which grows even faster and kills even quicker… but is also the reason she is in this clinical trail. I learn that 400 kids lives a year is just not enough for drug companies to develop a cure. I also am reminded of how resilient children are as I watch in awe of Lea’s bravery, strength and how she knocks down all of her “hard jobs” with nothing more a few tears and a few screams, which is more than I can say for myself.

 I have to leave the room while Lea get’s her IV put in. The last time I had a vasovagal response and passed out so it is best for both of us that I am not present (talk about a bad moment for me as a mom). I plead with God over a stainless steel sink in the parent snack area, a perfect place for my tears to fall. I wish she had my huge veins as they struggle to get an IV line in, and I wish I had her cancer as I struggle watching her go through all of this. I wish I could take this all away from her, I wish I could be the one to go through it, not her.  

I flux between being brave, silly and sad. For Lea, for our family and for every family that is around us, all battling this thing that shouldn’t exist called pediatric cancer.

It is dark when we head back home almost seven hours later. We pass by a high school where teenage kids are laughing and goofing off as they wait for their parents to pick them up. I wonder if Lea will ever get there, if she will make it to high school, and if I will ever have the chance to worry about her doing “teenage” things. 

It is after eight when we return home, Shake Shack in hand, as promised. We eat burgers and fries, we sip on chocolate shakes and we belly laugh over Mad Libs… and for the first time all day I feel at ease, even if for just ten minutes. 

Today at Target one of the employees strikes up a conversation with me and brings up Black Friday as I look around and notice the Christmas trees and holiday decor all around. It is all moving too fast. Everyone wants to wish away the days, and I want time to stand still… I think to myself as I wander through the isles, my cart slowly being filled with things I both need and don’t. (Damn you, Target!) That’s life though isn’t it…the sun rises and sets every day regardless of what is going on in the world, or in your life. 

Every day might not be good, but there is good in every day. 

As the days pass and I struggle to find the joy and the good, but I am working at it. Today the good is found in an awesome workout surrounded by powerful women, a snuggly night at home with family and a friend (and wine), and celebrating an amazing husband and dad’s birth tomorrow. For tonight, I’ll drink to that. 

Fundraising Updates:

You can purchase one of Lea’s owl tees from now until November 26 here

This Sunday, November 12 I will lace up my running sneakers from the first time in a long while for the best cause, Lea. You can learn more about this 5K and register here. 

For Our Prayer Warriors:

Please pray that this treatment works for Lea and for the other 28 children across the US in this trial.  

Please pray for wisdom and guidance around this trial and other options that involve us leaving the country. 

Please pray that we are able to find peace, joy and happiness in spite of tragedy.

Please pray for patience in dealing with Liv and Keira. 

Chocolate Stains & Clinical Trials

Christa Doran Uncategorized 3 Comments

Lea dripped ice cream over my bright white duvet cover months ago during one of our many middle of the night steroid feeds. Back when she still needed ice cream to get the four small white pills down. Back when this was all fresh and new, but no less scary than it is today. Back when we didn’t have an idea of what this was yet… when we had never even heard of DIPG. Now, it is all we think about. 

You know the comforter I am referencing, the one you take out in the summer and try so hard to keep a sparklingly white? Yes, that one. I didn’t care that she dripped chocolate ice cream all over the pristine white fabric. I didn’t run to dab it with water and laundry detergent, like I would have done in the past. I didn’t scold her. I didn’t tell her to be more careful.

I let it sit there and soak into the fabric as my salty tears spilled down to join the chocolate stains. I didn’t want to wash it away. I wanted to leave it there as a memory of her. Not of this horrible time, but of her, and of those sweet moments together.

I took that duvet cover off the bed last week and washed it, as I always do at the end of the summer. When I took it out of the dryer I was pleased to find my “natural” laundry detergent didn’t get the stain out, and it will remain there forever.

I find myself completely in love with my new daughter. It scares me to say I am having a hard time remembering who she used to be. She is not the same Lea we once knew and loved, and yet I love her even more, if that is possible… something that is so bittersweet. I told my mom I don’t want to love her anymore than I already do… it makes the thought of losing her unbearable.

Our days together are so sweet. We play countless game of Memory, and Lea paints, draws and colors with her favorite tool at the moment, paintbrush markers. 

I asked Lea last week how she feels about having a tumor in her brain. She thought for a moment, eyes glancing up and to the left for just a moment and replied “I feel ok about it.” I then asked her how she felt about not being at school with her friends this year. “I feel ok about it.” That’s Lea, rolling with life’s most awful situations, showing us how to be resilient, strong and brave as she faces things that would make grown adults crumble. 

Tomorrow morning, as the sun is rising the three of us will head back to Dana Farber for her first treatment. We should be in and out in just a few hours, and as far as clinical trials go, this is the least invasive, involving just two injections. She will have to get some blood drawn, a common occurrence for Lea these days, and have an IV put in, just in case she has a negative reaction. We will be returning to Dana Farber every three weeks as long as Lea is showing signs of improvement. If not, she will stop the trial and I don’t want to think about what happens after that. 

My life today is completely different. My days are different in every way, and we spend way too much time in hospitals. As we pack up the Halloween decorations I wonder if this will be our last with Lea. I used to escape to work, now I can’t wait to get home to hug them and smell them (I think that is a mom thing). Things that used to make me angry now just roll off my back and seem so trivial and small. I find myself wanting to be surrounded by friends and family all of the time, but can’t stand small talk with strangers or acquaintances, something I used to enjoy. I savor every day, every moment, every kiss, every hug, and every “I Love You.” I realize how much people and experiences matter… so much more than they did before August 10th. While I am grateful for this newfound perspective on life, I wish it could have come about in a way that did not involve my kid getting the worst form of cancer… and I so wish our lives could go back to the way they were on August 9.

We have a Facebook page for Lea now and you can find it here

Fundraising Updates:

You can purchase one of Lea’s owl tees from now until November 26 here

This Sunday, November 12 I will lace up my running sneakers from the first time in a long while for the best cause, Lea. You can learn more about this 5K and register here. 

For Our Prayer Warriors:

Please pray that Lea tolerates the treatment well and the tumor starts to shrink because of it.

Please pray that Lea is the first of many children to be cured from the DIPG monster.

Please pray for peace for Mike and I as we navigate the unknown.

Please pray for Livia and Keira as their life is changing as well.

Hydrangeas and Gaping Holes

Christa Doran Uncategorized 19 Comments

Disclosure: This blog was written from a time when I “go dark” as I call it. A time where it is hard for me to find joy and happiness and sorrow seems to swallow me whole. Some stories are shared from a place of joy and light, but this post is not one of them. 

When we moved into our home five years ago we planted a hydrangea near the front entry way. Lea was only one at the time, and just like her, this plant was small and hadn’t yet come into its own. 

I pulled out of the driveway the other day and my head turned just enough to get a glimpse of this same plant, now over grown and taking over the front walkway. I thought about how bright and vibrant the flowers were at the beginning of the summer, just like Lea. The sun hadn’t scorched and wilted it’s beautiful blue petals yet. It was perfect. Just like Lea then.

  

It is hard for me to look back to the summer photos, taken just a few short months ago, and see our beautiful girl, still healthy and free from this monster.

I hate that I can’t remember her this way. I wish I could see the sparkle in her eyes and experience her joy and light, even for just one more day. 

On the Friday after we returned home from our amazing time in Naples, I opened Facebook and saw the post that shattered my soul and sent me spiraling downward. When we found out about Lea’s condition, my close friend and neighbor told us about a six year old boy from Framingham, MA named Devin who has the same thing and lives next to her sister. Devin brought his community together, raised as much awareness as they did money, and using the hashtag #whynotdevin turned the town his signature green, after the superhero the Green Lantern. Devin’s mom and I exchanged heartfelt Facebook messages, sharing the same awful nightmare, only hers had been going on seven months longer than mine. Like everyone else, I wanted Devin to make it. But not just for Devin, but for Lea as well. That Friday Devin died, just ten short months after his DIPG diagnosis. This news was the jolt that brought me out of my vacation fantasy back to the reality of what we are facing. I quickly count the months on my fingers… if I go back to when we saw a change in Lea, I count almost four. How many do we have left? I feel like time is slipping through my fingers and I wish I could make it stand still. 

My eyes have been filled with tears most of the days since that Friday. I cling to Lea and can’t hug, kiss or smell her enough, demanding hourly “snuggly with my buggly” as I call it. 

   I have been having trouble falling back to sleep after her mid-night bathroom runs. Many times my thoughts drift to a place my nightmares used to be made of… her funeral. I decide I don’t want any part of it. Not for me or anyone else. No one wants to attend a funeral for a child.

I feel petrified about starting this clinical trial, which is coming soon. It is our only hope, so what if it doesn’t work… just like all the others that have come before it. I am scared that we have no idea what it will do to Lea, what side effects it will cause, what effect it will have on her. 

If her balance or gait seems to be off one day, I instantly think the tumor is growing. She seems to be staying the same, no improvement day to day but some days seems worse and I fear what this means for her… for us.

I already miss her and she is right next to me. I feel like there will be a gaping hole in my heart forever… the hole is the place where Lea’s light and joy once occupied. I don’t know how I will go on without her. I think I don’t want to live the rest of my years without her… but there is nothing I can do to stop what is going to happen. 

Tonight is Halloween and the start of the “holidays” which brings up a host of emotions. Mike and I wonder if this will be her last Halloween…Thanksgiving… Christmas. And will she even make it to Easter, or her seventh birthday on May 25? 

I lace up her bright purple sneakers every day and wonder if this is the last pair I will ever buy for her. The still look brand new as she is not running, skipping, scooting, climbing and riding as six year olds should. 

There are moments I still have a hard time believing that this is real, that this is happening to my child. A child I grew in my body, birthed without any medication (as it was best for her), fed her from my body for the recommend 18 months (as it was best for her), fed her only the best organic food I could find, washed her soft baby skin only with organic soap, made certain she was always buckled in the right way, her monster helmet securely fastened.

Life is fragile. You can do everything right and still lose. I tell Lea often how blessed I am to be her mom. I never wish she wasn’t my kid. She has impacted my life in a way no one else has and is teaching us all so much about life and what is important in it. 

We have started a Facebook Page for Lea. You can follow that here.

Fundraising Updates:

We have been overwhelmed by the love and support from our friends in the community. The OWL Fundraiser at the Connecticut Children’s Museum, Moana Fundraiser at Cold Spring School and Flair For Hair Cut-For-A-Cure was a huge success and we are so very grateful for the kindness and generosity this community has shown us. Thank you so much. At this time we have all the resources we need because of your kindness and generosity. 

We currently have one fundraiser left and it is a 5K run on November 12. You can learn more and register here

For Our Prayer Warriors:

Last night I couldn’t sleep. I knew there was one of you warriors praying for me and then I heard it. “I will never leave you or forsake you.” Thank you for your prayers. 

Continue to pray for miracle. That Lea’s tumor shrinks and never returns.

Please pray for Lea as she enters the clinical trial. Pray that she is the first of many children to be cured from this monster. Pray for wisdom and guidance from her physicians. Pray for little to no side effects and a positive response. 

Pray that we will be able to find peace and hope in Christ, regardless of the outcome. I know He loves her even more than we do, but I am having trouble not being selfish. I want her on this Earth with us now. I don’t want to have to live my life without her or wait until Heaven to see her again if that is what will be.

Pray for patience with our other two children, who need us even more now, but we feel as if we have so much less to give. 

Honeymoon for Five

Christa Doran Uncategorized 6 Comments

The Bob Marley Pandora station plays through the speakers of our white rental car, as we drive down 5th avenue in our favorite place, Naples, Florida.

“What song is this?” Keira asks, as she always does with her curious three year old mind. “A lie” I mutter, just loud enough for Mike to hear and respond with a comment.

The song was Three Little Birds, a Lea favorite, and a lie.

“Don’t worry, about a thing. Because every little thing, is gonna be alright”… the song lies to me. “IS IT BOB?!?!” I scream in my head.

A few moments later the same station tells me about “a wonderful world” and then “don’t worry, be happy…”

All lies, set to a steel drum. I used to dance around the dark hardwoods of our kitchen to those songs, actually believing their words. Then, my six year old got the worst form of childhood cancer possible, and I started to see the world as an ugly place.

They call this the “honeymoon” phase of DIPG. The few months following radiation, when your child’s symptoms improve, often times to return to the perfect state they were in before the monster started growing in their brain. I call it a mind F***. False hope. Another lie. 

Our second day in our favorite place, Lea walks independently for the first time in two months. (I shared this moment on my Instagram page if you want to see it for yourself.) While I am grateful for these improvements and more time with our amazing girl, the thought that everything might be taken away once again is too much to stomach, so I swallow it down, just like I do to the margarita sitting in my hand.

Our trip, although very different from past trips, is enjoyable. We swim, and laugh, and float, and dive, and eat and drink and rest. No hospitals. No daily reminders of this nightmare. I feel happy, most of the time, something I have not felt in months.

We take our family fountain photo, just as we have been doing for the past seven years. Ironically the fountain is broken, and it feels about right for our situation. This one stings, and my mind returns to those horrible places. 

There are moments when Lea is sleeping, or beating grown adults for the hundredth time at Memory, and it is just the four of us. I wonder if this is the future for our family. And how does it feel? And will we be ok? Then I am jolted back to the now, reminded of how precious the present is. I do not know the future or what it holds, I need to stop worrying about what has not happened yet. I tell myself I have to prepare for what might be, but the truth is I don’t know so why do I do that? It is not serving me well. I must stop and savor every moment with our family now, all five of us.

The last night of our honeymoon ends with the most perfect sunset on the beach. Belly deep in warm, salty water, with a family of dolphins splashing just a few feet away, the sun sets on my family of five and I am reminded of all the beauty that I can still find in this world.

Ways to help: Upcoming Fundraisers for Lea

Baby Owls Rescue for Lea tomorrow (Saturday) at 1!

MOANA Movie Night Fundraiser Friday, October 27

Flair For Hair Cut-A-Thon FFH 19th ANNUAL PROOF

For Our Prayer Warriors:

Thank you for your prayers. They were working while we were away. You are amazing and we are so grateful for you.

Please continue to pray for Lea, that her tumor continues to shrink, and never returns. 

Please pray for the team running the clinical trial, for wisdom and guidance in caring for Lea and the other children. 

I am starting to feel very anxious about Lea’s upcoming clinical trial. Please pray for peace and the ability to find joy and happiness in the everyday with Lea.

Please pray for a Framingham, MA family who lost their 6 year old Devin today to DIPG. Pray for peace for them as they deal with the unimaginable. 

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.

Resilience and Reminders

Christa Doran Uncategorized 1 Comment

Man never made any material as resilient as the human spirit. 

-Bernard Williams

What is happening around the world seems to match what is happening in our own lives. At times you feel hopeless, the darkness and sadness seems to swallow you whole, and you mourn the loss. This post is not about the mourning or the tears, but about finding the joy in spite of all those things. It also serves as a reminder of all the good that is still in this world, even though it might not seem that way right now. I know this is only one families story, but I hope it renews your hope in humanity, even if just a little bit. 

I am still riding a high just like the roller coaster we rode when we visited the Big E Friday night, an annual tradition in our family. Lea walked almost the whole 4 hours we were there, riding her first roller coaster along with our favorite, the “big yellow slide”. These days it stings a little less when she says things about “next year”. Rather than run off and sob I engage in the conversation, still able to carry on. We eat and play and ride and festival and at the end of the night Lea asks to play a game. Every fiber of my being is against these games. They take your five or ten or twenty dollars, and hand you a stuffed toy covered in germs and who knows what else. Despite all those things, we say yes. Lea plays a water shooting game and doesn’t win, which means no prize for her, and she is ok with that. As we walk away the man running the booth calls her “little lady” and tells her what a great job she did as he hands her a stuffed duck. I start to cry and so does Mike, and we thank the man over and over. That man is a reminder of the kindness and good that is in this world, and we need to speak of it. A germ covered bright yellow duck meant so much to us on that cool night and I am so thankful for this reminder of the good. 

On Saturday hundreds of athletes at Tuff Girl finished up the “Tuff Triad,” a fundraiser for Lea. So many asked how they could help our family, and we loved offering this challenge as a way to help them get fitter and stronger while focusing on their health and raising money for Lea. Over the month of September athletes committed to doing a minimum of 1000 swings or jam ball slams, 500 squats and 250 pushups. We celebrated the finale on Saturday in special class class “Triumph” and I felt moved to address the 7:30 crew, many of them having been with me for 8 or more years. I told them how proud I was of them. I told them how strong and amazing they are. I told them how much this challenge meant to me and my family. And then, I was unable to say anything else. I didn’t need to… I touched my heart, as they have touched mine, and we held our hands in the air and clapped. This tribe, as we call ourselves, is a reminder of all the generosity, the good and the kindness that is in the world. 

The whirlwind weekend continues and the very next day we arrive at Cold Spring School for a fundraiser put on by the amazing Angie and Alicia from Rascals Gym. I arrive at 10:30am, just 30 minutes after the start to a packed gym. I could feel people’s eyes on me as I entered, hand in hand with Lea, and was instantly overwhelmed with a flood of emotions. Looking around I take in the room of beautiful and kind people, some I know well, some I have never met. I can feel their love and support as I feel all the feelings… sad, angry, and mad that we even have to do this fundraiser, while at the very same moment feeling so much gratitude and so much love for these people. Hundreds and hundreds of people file into the bright community building over the next four hours. Friends and family travel from different states, and I am again reminded of the kindness and generosity of people. 

We leave for one of our favorite places, Naples, Florida one week from today. I am both scared and excited, unsure of what it will be like… something I am very used to these days. The break from daily hospital visits is a welcome one and Lea is so excited. 

Tomorrow is Lea’s last day of radiation. I know most are excited on this day, but not me. I will celebrate for her, but inside I am angry that this is only a temporary fix for a fatal disease. The higher does of steroids has been good for her. It quickly improved her balance, strength and coordination and her headaches have subsided. Today we sat in brightly colored children’s chairs in the pediatric oncology department and I actually felt a glimmer of hope when we spoke to her doctor about one of the clinical trials she is eligible for. 

This week I am more hopeful and have had an easier time enjoying the now… not letting my mind wander to what is yet to come. I don’t know the future or what tomorrow will bring, so I will find as much joy as I can in today, allowing myself to ride the high as long as possible. Tonight I am smiling as Lea walked on her own for the first time in months. Tonight I will find joy in that as I reflect on the kindness of so many and the resilience of the human spirit.

To see more pictures of our busy weekend and how we are finding joy, follow me on Instagram.

Upcoming ways to help:

Baby Owls Rescue for Lea October 2017

 

 

Just Keep Swimming

Christa Doran Uncategorized 2 Comments

The Smilow Cancer Hospital Radiation department has the biggest fish tank in the hospital. I wish I was still blissfully unaware of this “fun fact” but the truth is, I see this fish tank five days a week. Today is not a good day for me and I wish I could trade places with the fish I am gazing at through tired and bloodshot eyes. Today I feel like my legs just might give out on me at any moment… like the strength and power is slowly being drained from my body with every passing day and every awful experience. It was just seven weeks ago we were admitted to the hospital and this nightmare began, but I feel like we have been battling for years. Something that scares me when I think that the worst is in front of us.

I manage the strength to hold Lea up as she looks at the fish. Her balance and coordination have been getting worse, so she needs us more than ever to stand and move. Today we stare into the fish tank and she yells “there’s Dorrie!” just as a bright blue look alike swims by. Just keep swimming, just keep swimming… I start to repeat in my head as we wait for Lea’s turn. With just seven radiation treatments left we are nearing the end, something I am not happy about, but will happen regardless. The doctors decide to up her steroid dose this week after observing Lea and then Mike and I file into a small conference room to do our weekly chat about the next step… clinical trials and experimental treatment. While there are several “exciting” trials, there is nothing positive about the outcomes and I feel no hope, only anger and sadness. People keep telling me not to lose hope and I want to scream at them as loud as I can muster. Easy to say when it is not your kid. I wonder how they would feel in my place? Watching trial after trial fail, child after child get taken from their family, no cure in sight.  

I have two hourglasses that sit perched on a bookshelf in my living room, surrounded by beautiful black and white moments of my family. I look at these hourglasses with distain these days, wanting to throw them across the room, sending sand and glass everywhere. Today, I feel shattered and broken, just like I want to do to those hourglasses. 

On August 16 when they told us about Lea’s condition and the prognosis, I felt as though someone flipped an hourglass, very Wizard of Oz like.  Every day more and more sand falls through the tiny opening, and we have no idea when that sand will run out and we will lose our child. 

I meet the eyes of other parents at Smilow and we give each other a knowing nod. Our eyes tell the same story, but deep down I wonder if there is hope for their child. Part of me feel jealous of the kids getting treatment, wishing that was my kid. There is hope running through those IV’s… hope I don’t have right now. 

I love the days that are sprinkled with laughter, where I can find joy easily, today is just not one of those days. 

Wednesday right now means a long day at Smilow and art class. Today we leave art soon after we arrive. Lea is tired and doesn’t feel like participating. She falls asleep in the car and I carry her inside, a reminder to myself that even though I feel differently, I am not weak and frail, I am strong and powerful. Just keep swimming…

Ways to help:

Rascals Gym is putting on a fundraiser in Lea’s honor this Sunday from 10-2 at Cold Spring School. More information can be found here. 

Arden from Beautycounter is donating her commission from every purchase made through the end of September to Lea. You can shop that fundraiser here. 

Less than 34 tickets are available for the wine tasting and pizza truck fundraiser hosted by Votto Vines on Saturday, October 7. Get your tickets here. 

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