Breakable

Christa Doran Uncategorized 11 Comments

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.

-Anne Lamott

“There she is” I thought to myself as I drove Liv and Lea home from school on Tuesday. I could hear her sweet voice from the backseat of the car, and it sounded just as it did BC (before cancer). I smiled and imagined for a moment, my life was not flipped upside down and I was a mom driving her two healthy kids home from school. I love when Lea goes to school and life feels somewhat normal. Picking them up at 3pm feels amazing. Driving home with them chattering and laughing in the backseat makes me smile and I wish it could always feel this good. 

Almost every minute of my day is different now. Everyday experiences have taken on a whole new meaning. Like when I put three pairs of matching fleecy Christmas pajamas up on the counter at Carters and start to cry, wondering if next year I will only be purchasing two pairs. Like when we are climbing the floors in the elevator at Smilow and two women are talking about the stress of the college application process and I hug her close, eyes misty as I wonder if we will ever get to enjoy that “stress” with Lea. Like when I all of the sudden have a limited selection of Christmas cards this year as a card with “merry” or “bright” or “happy” would be a big fat lie. Like how I get angry and jealous when I see healthy, happy families enjoying everyday experiences… like we used to. Like how I used to think three kids was just too much and how much easier it would be if we only had two. I regret every one of those thoughts and plead with God to keep me the mom to these three amazing girls.

Every moment of every day is different because of Lea’s cancer. 

          Every time I see this picture my heart breaks. Lea in February 2016

I get asked all the time “how I do it.” How am I able to show up and smile, and do my job with enthusiasm and energy despite everything going on at home? Imagine a box you would bring a case of wine home in. The box has these cardboard separators for the purpose of keeping each bottle of wine from smashing into another, possibly breaking one or both (the horror and shame!). When I go to work, I slide a divider securely into place, fully immerse myself in what I am doing, and shut the part of my brain off that is always thinking about Lea. In order to do this effectively I had to set boundaries. I asked the Tuff Girl community not to ask about Lea or how we were doing in that space, and for the most part, they have respected this request. Every now and then someone asks a question that feels like a jolt to my system and I feel the divider being tugged away. The worlds collide, the bottles smash, the smile fades, and for those moments I am unable to be effective in my role. 

Their questions are coming from a good place… they have no idea what you are going through…I tell myself as I secure the divider once again. 

Keeping this divider in place takes a lot of emotional energy. This might explain why I usually drive home with tears running down my cheeks as the dark reality of our life floods back into my brain just like the deep red wine that floods my glass once I get home feeling quite broken.

My role as a strength coach is one that helps people realize how strong they are. Almost every single woman that steps into our gym is stronger than she would ever imagine possible. My job is to help her (and him) realize what she (and he) is capable of and fully realize her (his) strength and power. I always knew that we are stronger than we realize and can handle more than we know. 

Our current situation has taught me that the strength and resilience of the human spirit is the same. It can withstand far more than we ever thought possible. There was once a time where I “could not imagine” how I would handle the exact situation we are in, shaking my head no, no, no…. when I would hear about a family with our circumstances. And here we are… handling it. Sometimes it feels joyful, sometimes it feels happy, sometimes we handle it with grace and a brave face… but most of the time it feels like we are slugging through the mud, just trying to get through it, one impossible step at a time. 

Before I had given birth the worst pain I had experienced was a broken bone, a very infected finger, and food poisoning. That was my worst. According to me, the most I could handle. Then I had three children without pain medication and set a new standard for what I could handle. I found a new “ten” on my pain scale. 

As we go through life’s trials and tribulations, we are only aware that we can handle what we have proven we already can. And then something more awful, and more painful comes along, and we handle it. Again and again, we test our strength and resilience and again and again we (eventually) rise. We are stronger and more resilient than we realize. I hope you never have to face a situation like ours. But if you do, or if you are, know that you are stronger, braver, more powerful and more resilient than you realize. Keep getting up and moving forward, one unbearable muddy step at a time. 

Updates:

How is Lea? Lea received her second treatment at Dana Farber on Friday and continues to amaze us with her bravery and resilience. She is tolerating the treatment well and we were even able to go down a wee bit on her steroid dose. We go back to Dana Farber right before Christmas for her third treatment and she will have another MRI in January to see what the tumor is doing. She has been walking without help and has been (mostly) in good spirits lately. I feel like her strength and coordination is improving, which comes with mixed emotions.

She is in school two days a week right now and we love that she gets to be a first grader for a few hours a week. We enjoy and savor all the moments. 

Many ask if Lea is “excited” for our upcoming trip to Disney (THANK YOU MAKE-A-WISH!) or Christmas. Lea doesn’t get excited anymore. The sparkle and shine has faded… the joy in her soul is gone. This is so hard for us as Lea used to be a spark… a live wire in the room. Now her flat affect and monotone voice is her new normal. 

How are you? One day at at time and one hour at a time is how we live. I am so thankful to have Lea with us for Christmas. I have moments where my thoughts go dark and I have to shake myself back to the here and now. I have days where I feel completely hopeless. I have days when I have so much anger towards our situation and all the “stuff” that goes along with it. One wrong question asked with good intent, one “puppy dog” look sets me off and I turn into this bitter and angry person. I always let the feelings in, I let them brew and simmer and many times boil over. I cry. I write. I hit things. I lift heavy weights. I push my body hard. I drink some wine. I pray. And then I feel better. I have been diligent with self care as I know I have to care for myself throughout this process. I get a massage every other week and get to Tuff Girl at least three days to train hard. I go out with my friends at least twice a month. I love this fresh perspective, newfound strength, and sense of self… it just comes at too high a cost and I would send it all back in a heartbeat if it meant Lea would get to grow old. I have this constant fear that something bad is going to happen to Mike or Liv or Keira. All the sudden life seems so fragile… so vulnerable and breakable, just like those wine bottles. 

Upcoming Fundraisers:

Thursday, December 6- My family is putting on a macaroni and meatball fundraiser at the Dante Club in West Springfield tomorrow from 5-8pm. You can get tickets by calling my uncle, Don at 413-330-7399. $20 for adults and $10 for kids over 6. 

Saturday, December 9- Yoga for Lea 1:00 this Saturday at The Breathing Room in New Haven. 1-2:30 and family class from 3-3:45. $25 suggested minimum donation per class. 

Month of December- Basket Raffle at JH Hair Design- All month long the amazing women at JH will be selling raffle tickets for $25 each. One basket is filled with amazing goodies and valued at $600. They will also be doing a drawing for a runner up. Stop by to purchase tickets or get some hair love from these talented women. 

Thursday, December 14- Jingle Bell Singalong with Musical Folk at 4:30 & 5:40. Suggested donation per family is $15. 24 Selden Street, Woodbridge, CT. 

 Photo credit to the amazing Rachel. Thank you for this incredible gift. 

A New Normal

Christa Doran Uncategorized 14 Comments

You are braver than you believe, smarter than you seem, and stronger than you think.

Winnie-the-Pooh

Thanksgiving morning we sat cuddled up on the couch watching the parade. The turkey was in the oven cooking, I was still cozy in my jammies with fresh coffee in hand, and my girls were all around me. Thankful.

In years past I remember tearing up over the St. Jude commercial that comes on during the parade. You know the one… Marlo Thomas comes on to remind us to “be thankful for the healthy kids in your life, and give to those who are not….” Every year I would do just that. Thank God for His many blessings including my three healthy girls. This year I was on the other end of that commercial. “Those who are not.” Liv noticed my tears, so I made my way to the bathroom to clean myself up. Not today. Today, you hold it together. 

I couldn’t help but be thankful for Lea and our Thanksgiving at home with her. She was not in the hospital. She was not hooked up to a breathing or feeding tube, like many DIPG kids are in their last days and weeks. She was with us. She is with us. 

The day after Thanksgiving we packed into the car to cut down our tree, much earlier than in years past. “Don’t put off until tomorrow what you can do today.” That is a phrase I am living by these days. Do it. Today. Wear it. Burn it. Drink it. See it. Visit it. Visit them. Call them. Hug them. Love them. Today. You have no idea what tomorrow will bring. Do it today. 

While stringing the lights on our Christmas tree I said what Mike and I had been thinking all day… “This might be our last Christmas with Lea…”  The words felt like a punch in the gut. 

We carefully string the lights while Lea naps and when she wakes up, we hang our ornaments. I have a few favorites I carefully position in the perfect spot while the girls put every ornament possible into the smallest space available to them. (Insert eye roll) One of my favorites happens to be the metal miracle ornament I purchased years ago… this year, like many things, it takes on a whole new meaning. 

I pull out our family letters. There are 5 of them. M for Mike, C for Christa, L for Livia, L for Lea and K for Keira. I start to cry as I hand them to the girls and Mike. My mind wanders to next Christmas… what if I pull these letters out and she is gone? I decide to stuff it down, refill my wine glass, turn up the Christmas music, and enjoy the moment. She is here. 

When I became a mom in January of 2009, like many new moms, I struggled with my “new normal.” I found the job so very challenging, and looked at moms of two, three and (gasp!) four in awe thinking “How do they do it?” Then I had number two, Lea, two years later, and quickly found an overwhelming new normal. Then… surprise! Keira is born three years after that. Yet again, I found a new normal as a mom to three amazing girls under the age of 5.  Today, I can’t remember what my life was like before I was a mom. I find this feeling both comforting and upsetting. Knowing  and experiencing that with time, we adapt and find a new normal means if Lea dies the pain will eventually lessen… but it also means that I might forget what life was like with her. I struggle to even remember what life was like BC (before cancer) even though it was only four incredibly long months ago. 

I can’t look back at what our life used to be. It crushes me and renders me incapacitated. I can’t look forward at what we are not yet facing. It paralyzes me. Both prevent me from living fully present and engaged in the moment. I will continue to fight to find joy in our new normal, and whatever that looks like down the road. 

Lea is the same. No better. No worse. She rocked climbed thanks to the amazing staff at City Climb this past weekend. What an amazing moment for us to watch. We head to Dana Farber on Friday for treatment number two of the clinical trial. 

I am in a good place most days these days. I have moments, like on Sunday night when Lea pulls up a video of herself from last Christmas, all sparkly and perfect, face, voice and body full of light and joy. I feel so sad for what we have already lost. I continue to mourn the loss of that amazing girl. She is not that same person anymore and I miss her so much.

Lea one year ago

That same night I read about another child with DIPG dying. Twelve months after his diagnosis. I feel some of my hope for Lea die along with every child who loses the battle with this monster. I quickly count the months on my fingers… five. I have no idea how many days we have left with her, but I am determined to find joy and be present in each and every one of them, as I continue to be reminded how resilient the human spirit is. How much more we can handle than we think we can. How quickly we are able adjust to a new normal. I find peace in that, and in the fact that time heals… I hope.

Ways to Help:

Upcoming Fundraisers

December Events

Pasta Night Fundraiser– Thursday, December 7 from 5-8pm at the Dante Club on Memorial Ave in West Springfield. Tickets are $20 for adults, $10 for kids over 6, kids under 6 are free. Please contact Donnie Felix at 413-330-7399 to purchase tickets. 

Yoga For Lea– Saturday, December 9. 1-2:30pm round robin adult class. All ages family class from 3-3:45pm.  Breathing Room Yoga Center at 216 Crown Street in New Haven. $25 suggested minimum donation. 

Blow-drys for Lea– Sunday, December 24 from 10am-2pm at Meche Beauty Lounge. Book here or call Meche today and book your appointment! 203.626.9963

Please Pray

For healing.

For a miracle.

For peace.

For the ability to find joy.

For patience. 

Smiling Through The Suffering

Christa Doran Uncategorized 4 Comments

You do not get to choose the events that come your way nor the sorrows that interrupt your life. They will likely be a surprise to you, catching you off guard and unprepared. You may hold your head in your hands and lament your weak condition and wonder what you ought to do. To suffer, that is common to all. To suffer and still keep your composure, your faith, and your smile, that is remarkable. Pain will change you more profoundly that success or good fortune. Suffering shapes your perception of life, your values and priorities, and your goals and dreams. Your pain is changing you.

-David Crosby

Laptops open, papers askew, Bridgett and I sit perched on the clear purple chairs in the back of the gym discussing to do lists, upcoming events and what felt like one hundred other things. At least. We went down the list…. check, check, check. “Oh and what about that email we got about your speaking at that event?” “It will depend on timing… when is it again” “April.” “That is the month my daughter is supposed to die.” I say the words matter of factly, not believing they are coming out of my mouth. Our fingers immediately stop typing, our minds stop racing and we lock eyes, which are now quickly filling with tears. We hold hands and take a few breaths together to recover from what I just said. “Ok then, so put me down as a maybe depending on what is going on with my life….” Check. Check. Check.

As a parent you are fully aware that you could lose a child… you just never think it will happen. You imagine it, then tell yourself no way, I cannot imagine… and throw a prayer of thanks to the Big Guy upstairs for healthy kids and a happy life. Or at least I did. 

Mostly it is loss which teaches us about the worth of things.

-Arthur Schopenhauer

Then comes the pain and suffering. The worst thing you could imagine actually happens, and you have to deal with it. Because really, what else are you going to do? I have a business, eight employees, three children, a husband, a dog, and a home… all things that need my love, care and attention. Want to or not (and there have been many days I have not wanted to) I have to face each day as it comes. One day at a time. One foot in front of the other. 

I get asked a lot “How are you?” and “How is Lea?” (Those are my least two favorite questions to answer these days.) 

I am as you might imagine. Caught in what feels like a nightmare. The days vary from really bad to not so bad. There are times when I feel sick to my stomach over our situation, swallowed in sadness, and so very scared about the future and what it holds for our family and Lea. There are joyful and happy moments within each day, and times when I am smiling… and mean it. Lately I have been smiling more… genuine, real smiles… and that feels good. 

Lea is no better, which is worrisome, as they told us our kid might return “back to normal.” Not sure what would be harder. Never having her back, or having her back and then losing her again. Her temperament seems different these days. Every morning when I get her out of bed I hold my breath as I check her gait and balance. A Masters Degree in Occupational Therapy is certainly coming in handy these days as my trained eye quickly scans her balance, coordination, dexterity and strength. I let out a sigh when my checks are done and I realize she is the same as she was the day before. This monster moves fast. I saw it with my own eyes when overnight she could no longer walk on her own. We have no clue when the monster will strike again. She is two weeks into the clinical trial and is not showing any adverse reactions. We won’t know if this trial is working until the effects of radiation wear off, whenever that is. No one knows. Every kid and every case is so different. We will head back to Boston next week for injection number two. 

We celebrated Mike’s birthday ten days ago. Lea shuffled over to him, smiling with pride, and presented his birthday card. The first thing that came to mind was if this was the last card she will ever draw him? And will I even get a birthday card this year from her on my birthday in July… the month we started noticing all those changes. 

Just a wee bit later that day I scroll through my phone to find some pictures of Mike for the “I am a good wife” birthday post. The one where I post pictures of our happy family and say nice things, like how much I love him (I do) and what a wonderful man he is (he is). I stumble across a video I had never watched of Lea, taken in February when she was still all sparkly and joyful, back when she still had the light in her eyes and the joy in her soul. I can’t apply the right filter through my tears as I post the pictures of Mike and our family. But it doesn’t matter. Lea’s beautiful, sweet face smiles back at me through the screen. I miss that face so much. The steroids that keep the swelling down in her brain also make her unrecognizable. The other night while she was sleeping I put my hands over her puffy cheeks and there she was. My girl. Just as she was before. Or at least on the outside.

She has been going to school on Tuesdays and Thursdays. I love that she gets to be a first grader and do normal six year old things. Today at school meeting Lea was a part of the art project her class shared. As she sat on the floor with “her class,” her photos flashed on the projector and instantly Mike and my eyes filled with tears of joy. It was such a gift to see her up on that screen as a participant.

When people know they are going to die what do they do? They travel. They experience. They work less or not at all. They visit and spend quality time with loved ones. Things like overtime hours, “the daily grind,” the image you are portraying on social media, the number of likes, comments and followers you have, as well as what others think about you seem very small and insignificant. Lea’s diagnosis teaches me so much each day. Whether she lives or dies I made a promise to myself to continue to live the rest of my days, however many are left, like this. I wish I could change our situation, but I can’t. So I will choose to let all of the pain and suffering change my values, perceptions, priorities, goals and dreams for the better, and I will keep doing my best to smile through the suffering. 

If Lea becomes another DIPG statistic this will be her last Thanksgiving with us. Every holiday seems that much more special, and so very bittersweet. This holiday, even in the midst of suffering, I have so much to be thankful for. The love, kindness and extreme generosity shown to us by so many, friends and strangers alike, has moved us deeply. Our family and friends continue to stand beside us and hold us up. Thursday as Lea sits next to us at the Thanksgiving dinner table, my smiles will be real. 

November Events

Owl by LEA T-Shirts are available for purchase until November 26 (that is FIVE days away!).  Order your Lea OWL tee here

December Events

Pasta Night Fundraiser– Thursday, December 7 from 5-8pm at the Dante Club on Memorial Ave in West Springfield. Tickets are $20 for adults, $10 for kids over 6, kids under 6 are free. Please contact Donnie Felix at 413-330-7399 to purchase tickets. 

Yoga For Lea– Saturday, December 9. 1-2:30pm round robin adult class. All ages family class from 3-3:45pm.  Breathing Room Yoga Center at 216 Crown Street in New Haven. $25 suggested minimum donation. 

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.