The Last Good Day

Christa Doran Uncategorized 39 Comments

“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” -Ronald Reagan

There are many events I imagined planning for Lea when I gave birth to her almost seven years ago. Her funeral was not on that list.

 May 25, 2011

This is the part of the story when I tell you Lea didn’t make it. She wasn’t the one to beat the impossible beast. This is that horrific post where I tell you we watched our six year old daughter die in our arms. We heard her last breaths. We watched her lifeless body get zipped up in a body bag… an image that will be forever seared into my memory and one that will give me nightmares I imagine, for the rest of my life.

Harsh? Yes. The past nine months have been nothing short of harsh. Childhood cancer is harsh. DIPG? Even harsher.

Lea didn’t even make it nine months. She died two days before Mothers Day, and 15 days before her seventh birthday.

I have decided not to sugar coat any part of this journey in order to spread awareness and perhaps, help another family facing this mighty beast called DIPG.

We knew this day was imminent. I prayed every day and every night for a miracle… and then, asked God if He was not going to give her a miracle, may He show her, and us mercy. And He was. Our mighty God was merciful.

I was so fearful about the end, petrified of what we were going to face, and if she was going to be suffering in her last days. But she didn’t.

At the advice of our amazing team at Yale, Mike and I decided not to intervene. We were going to let DIPG run its course, even if it meant less time with our amazing girl, because it would mean less pain and suffering for her. I remember our doctor telling us that the only saving grace of DIPG is that if you don’t intervene, the end is usually peaceful. We had their word that they would do everything in their power to make sure Lea was not in pain and we felt supported. I am so glad we trusted their advice and listened.

Her last good day was Wednesday. It was a beautiful day filled with sunshine and a warm breeze. Armed with Oreo cookies and some friends, I pushed Lea around the neighborhood as she laughed and sang and snapped her “more powerful” hand. We had her favorite pizza. We ate a “Lea owl” ice cream cake. We watched her favorite show. She saw her favorite people.

Wednesday morning Lea was in a lot of discomfort so we gave her pain meds and called in the hospice team. She struggled for a few hours to get comfortable, and finally, at 11:30am asked to be put on her belly, a position she never sleeps in, but quickly fell asleep in. I stayed close by as she rested, writing a blog that will never get published, because her life ended less than 12 hours later.

After her breathing became very noisy and I noticed she hadn’t moved at all in several hours I went over and picked her up, attempting to wake her… but she wasn’t there anymore. At some point during her nap, she must have slipped into what appeared to be a coma. Her breathing was labored, she was unresponsive, her body limp and lifeless, but she didn’t seem to be in any discomfort or pain. She was not speaking or moving, only breathing.

We gave her medicine to calm her breathing and took her upstairs to our bed at 9pm, positioning her body on her side as our doctor advised us to.

I snuggled up next to her like we did every night that she slept with us, hand in hand, head to head. I told her I loved her so much. I told her how glad I am that God chose me to be her mom. I told her she was special, and safe, and loved. I told her she could go… and then thanks to Ativan, I drifted off to sleep. At 10:55pm I woke up to Lea’s jagged breaths and Mike praying over her. She took four, horrifying, jagged breaths… and then she was gone. Peaceful. Free from pain and suffering. Free from her earthly body that had failed her.

I saw her in my mind skipping the way she used to down the streets of heaven, which Lea hoped were lined with candy.

We sobbed over her. We hugged her. We told her we know she isn’t in there anymore but we love her. We shook our head in disbelief and cried out no, no no… We stroked her sweet face. We held her sweet, small, perfect hands. We smelled her and kissed her all over, knowing this would be the last time we would ever do this. We laid in bed with her for what was the quickest two hours of my life.

And then they took her away.

For almost seven years Lea has been with me… and then… she wasn’t. It the strangest, most awful, most nauseating, gut wrenching feeling in the world knowing you can never see or kiss or hug or speak to your child again in this lifetime.

The next morning I felt numb, but also at peace for the first time in nine months. There was a sense of relief in Lea’s death. We no longer have to watch our once healthy child lose function day after day, or endure constant tests and medical interventions, or wonder if she will suffer a painful death, or wonder how it will end. It is over. We are so tired. And so glad that Lea is no longer in pain, forced to watch as her body fails her day after day.

I have been blessed with a very special group of friends, who are amazing distractions, margarita makers and force-feeders. Unable to change out of the clothes from the night before, we drank margaritas, cried, laughed, and shared our favorite Lea stories. We set up flowers and pictures of Lea inside my family room for everyone to remember the gorgeous, bright, sparkling girl that she was.

We are experiencing a sense of pain and loss that is indescribable. Worse than I imagined. But I truly believe everything in my life thus far has led me to this place. God knew I would need this community for this tragedy. He knew I would need an amazing family and an army of friends who are literally holding me up and standing by as we go through life’s very worst.

Walking with a friend in the dark is better than walking alone in the light. -Helen Keller

Lea taught a lot of people a lot of lessons, including us. She has been a blessing in our lives as well as touched the lives of thousands through her sickness, and now, her death.

Because of the reach Lea has had, the thousands affected by Lea’s journey, and in order to do what is best for us during this impossible time, we have decided to make the wake tomorrow night private. Close friends and family are welcome at the wake, and Lea’s amazing community is welcome at the mass on Wednesday. We welcome you to wear your Lea Owl tee, or Lea’s favorite colors, green and blue as we celebrate the life of one amazing girl.

More information can be found here.

Thank you for your continued prayers and support during this impossible time.

This story isn’t finished yet.

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 than 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

Comments 39

  1. I just want to say I’m sorry for your loss. Lea was an amazing little girl. I’ve been following your post and just got to know you guys for a short period of time. All of this has touched my heart so deep. I’m truly sorry for your hurt. ❤️❤️💕🦋💐

  2. Thank you again for sharing your story. You are brave beyond measure. I work in a job every day trying to cure childhood cancer and I will hold your dear Lea and your sweet family close to my heart for many days to come. 💙

  3. Words can not express how saddened I was to hear of the passing of Lea. May your beautiful memories of Lea carry you through this difficult time. You and your family are in my thoughts and prayers.

  4. Your Journey is heart wrenching and we will continue to pray daily for you. Lea’s life has touched so many and your story has caused us to pause and redefine our roles as parents, and what’s really important. We are changing the way we do things, the way we interact with each other, the things we prioritize. We will forever be grateful for what your little girl has taught us and will honor those lessons for the rest of our lives, in tribute to her.

  5. I am so sorry for your loss of Lea, but I know that she is with Jesus. I know in my heart that she greeted Avery Neill who went home to Jesus on Mother’s Day at 5:15 PM. Avery was diagnosed December, 2017.

    I pray that a cure will come to destroy this beast known as DIPG.

    God bless all of you in your time of healing.

  6. I cried the whole time I read this. I can’t even imagine that type of pain. You are an inspiration; looking out to God during your toughest time. Your strength is radiant in your weakest moment. I am so sorry for your loss.

  7. So heartbreaking to read. Our thoughts, hearts and prayers to all of you, Christa. Thank you for sharing your beautiful Lea and “Lessons from Lea” with all of us, including all we now know of this heartwrenching monster, DIPG… May God send you all peace, in the coming days, knowing He is hugging Heaven’s newest Angel, Lea.💜🙏🦉

  8. Christa
    You are an amazing woman and mother for sharing your journey with your sweet daughter Lea. My heart aches for you. May time help to heal the wound in your heart

  9. Christa, I met you & Lea when she was a baby through our mutual friend, Katie. I’ve been following your story & want to express my sincerest condolences. Nothing on this Earth compares to the monumental anguish of losing a child, and having to watch her suffer & struggle. I am absolutely amazed at how you have received this burden, this heavy cross, and have not only done an amazingly strong job caring for her, but you found the strength to allow the love pouring in around you to lift you up when you needed it. The entire community has been with you and you have taught us all a serious lesson in keeping things in perspective. You have amazing Grace and I only hope for you that the love of your daughters and husband will sustain you and give you the strength you will need in coming days and weeks. You are brave and wonderful . . .her huge spirit will live on forever, she accomplished so much in her almost 7 short years. I keep you & yours in my prayers . . .keep on keeping on.

  10. Our family is grieving with yours and holding you close to our hearts and in our prayers Christa. We love you all so very much.

  11. We ALL hold you and your family I pure light and love. My prayer is that you feel some strength and comfort in the prayers and love of this community around you. They are so genuine, so filled with love and light.

  12. Lea was blessed beyond all blessings….to have such a strong and faith filled Mom and Dad, to share your inner most thoughts with one true goal…to help others and defeat this monster once and for all. I know the Lord and our Blessed Mother holds you all in love, peace and strenth. I will surely remember Lea in my prayers every night. Love and peace, Linda Manzelli 🙏🙏💔💔💙💙

  13. Continuing to lift you all up in prayer – every day! In awe of what an incredible woman you are Christa. You continue to inspire me even if your darkest days.

  14. I am beyond sorry for your loss. My heart hurts and it’s hard to breathe imagining a fraction of how you feel. It sounds like your daughter was such a beautiful angel on Earth and you had an amazing bond. Again, I am so sorry. It’s not fair and I wish it was different. It sounds like you were both blessed to have each other. I’m sending you prayers. I admire your strength and grace. Your story has inspired me to believe. Believe in myself more, have more strength from within and more grace in the world in honor of your beautiful daughter, Lea.

  15. I am so very sorry for your loss of your beautiful daughter. Love, prayers, and hugs from California.

  16. I am so so sorry and my heart aches for you. I have followed your story and I ran for Lea this past year at the Tessa Marie run. I watched you cross the finish line with Lea. Your story and hers have touched so many hearts. As a mom to two young girls myself, you and Lea have taught me to stop and take the time to enjoy them. It has taught me that I need to stop worrying about the messy house, the constant repairs, chore list, etc and just realize how lucky I am to enjoy my children. You have helped make me a better mom. I’ll be praying for God to give you comfort. You are an inspiration and the true definition of grace and strength. God could not have chose a better mom for Lea.

  17. thank you for sharing the gut-wrenching journey to bring awareness. No parent should ever experience this tragedy. You are all loved and thought about from far and near. So much love to you as you navigate what feels impossible. LOVE LOVE LOVE. xoxo

  18. There are never appropriate words when someone loses a loved one, never mind a child. As a mother of two girls not far from Lea’s age, I could never imagine the pain you are your family are going through. You make me stop and appreciate everything around me. Deepest Prayers and thoughts to you as you go through this horrible time.

  19. I cried reading this post. In the end I realized while I cried for your loss I also cried because of how lucky Lea was to have you. She was meant to be yours and you hers. There is nothing more beautiful than that.

  20. The journey ends and yet the journey is just beginning. I have followed every post of ” Lessons from Lea” and this most difficult post has left me sobbing along with you and everyone whose lives you have touched. I hope there will be more “lessons” and that you find comfort and healing with each word you write. Your family has touched our hearts and we never be the same. God Bless your beautiful family.❤❤❤

  21. I cannot find words of comfort or consolidation. There are none. The gift God has given you, to communicate love and loss and hope and pain … is a tribute to your most precious girl. I am so very, very sorry for your loss. I know and love the Lord, but I cannot make peace with suffering of the innocent. I pray the miracles of grace and peace to you and your family.

  22. I too have followed your posts daily regarding Lea. She was fully of your love whenever I saw her. Navigating her own way with your watchful eye. We’re so sorry for your loss. What a bright spirit. She’ll be missed by all. Hugs, love and peace to you and your beautiful family.

  23. I have nothing but admiration for you and your strength Christa. I am so sorry to hear of Lea’s passing but I am glad she no longer has to suffer. God will lead her into heaven and she will eternally be an angel 💙

  24. Christa/Mike,

    Your little girl is in heaven now. Dancing with the Angels. Parents should never have to go through the ordeal that you have, but you have handled it so well. “Love is not having to say you are sorry”, is from a movie. You both and your girls have lavished so much love on Lea hopefully you will just have warm memories of Lea. Lea was a Angel in life and she is a Angel now in Heaven. Sincerely, Peg & Art Curry

  25. You are amazing parents, I have been a pedi RN for 27 yrs and have witnessed so many children suffer with terminal illness, parents who wont let go, children passing in the hospital, monitors, noise, etc. I admire you and your husband, embracing the heartache with grace and allowing Lea to pass in her home with her loved ones. Bless you all

  26. God bless you and your family, I could not stop crying while reading your post . I wish we had an answer why God puts Kids through this terrible disease. When I had cancer they gave me 4 months to live. I was fighting it at the same time a 12 year old girl I knew was also doing the same. I prayed that if God had to take one of us that he would take me. To spare that poor little girl, and let her grow up and have a family of her own. Well God was cruel and took that poor girl ,her name was Casey Ridgway. Childhood cancer is such a terrible disease. Some day I hope they can find a cure so the kids and their parents do not have to go through such pain and sorrow. Lea will be by your side as your little angel for ever. My daughter every once in a while will say , dad I saw Casey in my dream . That’s her letting us know she will always be present . May God Bless her soul and your family. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏😇😇😇😇😇😇😇😇😇😇😇😇😇

  27. You have an extraordinary gift with words. I’m so very, very sorry for your loss. I cannot imagine. Your loss is what every good parent shutters to imagine.

    In all of this tragic and terrible sadness, your words, your decisions as a family, your love speaks to an utterly beautiful thing.

    Your sweet daughter found the end (and a new beginning) peacefully. I KNOW you prayed for that. She was able to meet the one who made her, in all of her perfection, surrounded by you all who loved her most dearly.

    You don’t know me but I have been and will continue to think of your family. DIPG is a terrible thing.

    Lea was so fortunate to have her family to guide and love her through it.

    Much and sincere love to your family.

  28. You don’t know me, but I have been following your journey through a mutual friend and have been praying for Lea and her family. My heart is breaking for you but your faith in the midst of this painful journey is a testimony to the strength God gives His children if they will lean on Him. Maybe you have or haven’t asked “why” but I have, yet as I was reading in Ecclesiastes 11 today…

    Just as you do not know the path of the wind and how bones are formed in the womb of the pregnant woman, so you do not know the activity of God who makes all things.
    Ecclesiastes 11:5 NASB
    We don’t understand His ways, but we trust Him.
    I will continue to pray for your family as you go through the grieving process and pray that many lives will be touched for the kingdom of God through this journey.
    With love from a sister in Christ.

  29. My deepest condolences to the entire Doran- Vancini family. May you find comfort and peace as you face this devastating loss of your beautiful Lea. So very sorry to hear of her passing. She was a bright light and will always be a reminder of what is really important in life. ❤️

  30. My deepest condolences to you and your family. You are a remarkably brave, strong woman. I’ve known Lea through your blogs ……. and the Brady family❤️
    She was an incredibly brave little girl who was loved deeply by so many. RIP Lea❤️💐🙏🏻

  31. Psalm 23:
    1 The LORD is my Shepherd; I shall not want.
    2 He makes me to lie down in green pastures; He leads me beside the still waters.
    3 He restores my soul; He leads me in the paths of righteousness For His name’s sake.
    4 Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me.
    5 You prepare a table before me in the presence of my enemies; You anoint my head with oil; My cup runs over.
    6 Surely goodness and mercy shall follow me All the days of my life; And I will dwell in the house of the LORD Forever.

  32. You are all remarkable, you have all been remarkable, I have no words. Thank you for being who you are, that you opened your heart to share this horrific journey. God bless you all, just one day at a time. Breath and remember the sweetness of Lea. I, like every other, am crying reading this and have cried for all of hat you have shard. Hoping all the tears soften the ground so that flowers 🌺 may grow. God bless you all

  33. God has a new angel named Lea. Peace and prayers for all of you. You are one strong woman. God bless. It’s my pleasure to know you and Mike

  34. My heart is heavy but I admire your family’s strength! You are so brave and powerful which you constantly remind us. Now it’s our turn to remind you! Sending good vibes and love your way!

  35. I only know your story through Jen and Cori, but I have been praying for sweet Lea and all of you from the start. I will continue praying for peace and comfort for all of you. I am so sorry for your loss doesn’t seem appropriate words for a loss this great, so I will continue to pray for peace, love and comfort for your family. And until you all meet again may God keep sweet Lea in the palm of his hands.

  36. I have been reading and re-reading this post, all the while hoping it is some kind of mistake or bad dream. I have no words of comfort. My mind can’t even make sense of the death of a beautiful, wonderful child. Your family has endured the unimaginable. I am praying for you and Mike, Liv & Kiera everyday. Hold close the memory of her defiant spirit, her smell, the familiar timbre of her sweet voice. May God Bless you and watch over you.

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