Read personal stories from our founder and Jennifer's mommy, Libby, along with other Warrior Moms and news from our Unravel team.

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the 3rd 12th

February 9, 2017

Its almost here..

That invisible yet powerful clock has almost come full circle.. .to mark off yet another year without the girl that made me a mommy.

i thought that was it. i thought the brutal road to being your mommy meant i paid my dues. .. 

 Sunday will mark 3 years..

3 years since she I last touched my Jennifer’s warm skin. .. last heard her jagged and raspy breathing. I was so scared she wouldn’t let me be there .. be awake when she died. 3 years ago I was asking myself unanswerable questions.. ones I still am asking today..

That day .. those worries I wrote about then.. I was right. It is EXACTLY how I feel today. ..

10 more days… I had 10 days left with her..

She let me though.. She gave me so many gifts those final hours. Through her suffering she remained the girl she had always been.. Kind. Giving. Generous. Trusting.


You know I didn’t deserve any of it.. She suffered so much leading up to that final breath.. .

I am her mommy. Her mama. And my 6 year old suffered tremendously.

She hurt. Physical pain. Emotional fear. And I let it happen.

 I wanted her . .. I wanted to absorb as much of her as I possibly could. Tony wanted to give her more meds.. . He wanted to sedate her.. I fought him though.. I wanted her with me as long as I could.

when it really mattered.. hell the only time my parenting any of my children has ever really mattered I was so selfish. I put my needs ahead of hers. I can never ever undo that..

I can never right my wrongs with her. I don’t get that lifetime to live and experience and have so much more good than bad.. And this one. This one has condemned me for the rest of my life. ..

It was her eyes. When she lost every single other thing. When it was the only ting she could control.. It was her eyes… Those eyes I longed for .. the ones I begged for.

They never lost their spirit or their life.. until they closed for the final time…

and even now. Her eyes. They seem to still carry a magic to them.

please let her matter to you. please let her continue to walk her imprint into your heart.. leave her trail of glitter.

Once I let myself .. in those final hours.. once I let myself really connect with her though her incredible brown eyes.. It changed. I knew I had to let her go. I knew I had to lead her down the path ..

i tried. baby i tried to do the most unnatural thing .. except that it is natural .. see baby girl thats what a mommy is supposed to do.

you had the heart of an incredible mom.

So many questions.. so many things I wonder about. . so many things I want to know.. So I sit here staring at her kindergarten picture.. . And I beg her to just tell me.. I beg her to explain it.. to help me understand it all..

i beg you to forgive me

So I feel it. This pain. This gut wrenching despair .. I feel it ripping through me. .. I feel like every cell in my body is light up by it. ..  Real physical grief

i beg you to come back

  It hurts just as much as it did right then.. except now I know.. I know the grind that grief can have on a person. I know that the 13th is simply day one of a new invisible clock.. ticking towards the 4th year.


damnit little girl

i am telling you.

come see me in my dreams.




…until there is a cure..

  1. Patty says:

    I love you – I love Jennifer! Keep writing – I am still here


  2. Jessica says:

    We remember her – Jennifer and we will never forget her. I hope you get your wish. I wish you could have her back, real, warm, kind, generous, the list goes on. You are not alone, we support you and your family.

  3. Janis Rien says:

    Libby, No words can heal your pain or broken heart. Jennifer is so alive in spirit, her beautiful eyes sparkling, with love and gratitude that you are her mom. Jennifer will send you a sign a sign from Heaven. It may be a butterfly, a song, a feather, a rainbow, a feeling, a touch, or the breeze on your face. God Bless you and your family. … until there is a cure … ??????

  4. Kendra Smith says:

    She matters every day. It doesn’t matter if it’s days or years, she is and will always be very much remembered and a part of our heart… my heart.

  5. Jane says:

    I will always keep Jennifer close in my heart <3 I will pray our girls are together… February is just almost unbearable and then, we wake up again to a new day, another day with angels in heaven that should be here with us on earth. I get it Momma, I get you. Keep writing, keep sharing, you are teaching the world. Jennifer is teaching the world. Much love to you-

    Annie's Mom

  6. Kristy says:

    I am still here, still reading and touched by every post you write. We think of Jennifer regularly. We think of her when we see dandelions, dragonflies and many other triggers as well. She needed you in the end just as you needed her. Put yourself in her shoes. If it were you in that position (hurting, scared) would you choose to be sedated or would you choose to have the last moments with your mommy. As a mom myself and a daughter I know I would choose to have my final moments be with my mom, even if it meant I was scared and hurting. Don’t feel like you were selfish, I’m sure she would have chosen that time with you as well however she could have it. Love to you!

  7. Leah says:

    Sending love, and thinking of you and yours every day.

  8. Jennifer says:

    You’re family is heavily in my thoughts and prayers- LOVE4JLK always❤️❤️

  9. Melissa says:

    I have nothing to offer but my prayers and my tears. I pray so hard for her to visit you in your dreams…you deserve that sweet release, even if only temporary. I know nothing can take the guilt you feel away…but I know in my heart that she has forgiven you for anything you may have possibly done, although I understand why you acted the way you did…I believe I would have acted the same way in your shoes. Nobody could fault you for that. There is no guidebook for letting your child die the “proper way”. I am so horrifically sorry.

    I have grown to love Jennifer so very much through your shared stories and photos. Those beautiful brown eyes captivate…bring you in closer. I don’t have the words to describe the sorrow I feel in my heart for your suffering. How I would give anything to bring her back to you…

  10. EMailman says:

    I will pray fervently that she comes to see you in your dreams.
    And I think you did the right thing. She wanted that extra time with you too.

  11. Ashley says:

    I think about her and her stunning smile ALL THE TIME. I want you to know that.

  12. Stephanie says:

    Thinking about Jennifer, you, and your family always, Libby. Thank you for sharing your story. Jennifer has been my inspiration to attend medical school. Studying for my MCATs as we speak.

    <3 JLK

  13. Valerie says:

    I’ve never commented on your blog, although I’ve followed you now for over 3 years, and prayed for Jennifer and your sweet family. I love all of you, and wanted you to know that Jennifer has left an incredible mark on me. She changes how I see my own children, and inspires me to be a better mom to my blessings. I think of her whenever I see a dragonfly, and am very thankful that you have allowed us the opportunity to “meet” Jennifer and know your family. Thinking of you and yours, and praying for you all. <3

  14. Ashley T says:

    “when it really mattered.. hell the only time my parenting any of my children has ever really mattered I was so selfish. I put my needs ahead of hers. I can never ever undo that..”

    you are admitting that she suffered and while her father wanted to give her more medication to try and ease her pain, fear and suffering, you refused to do that? because YOU wanted her with you longer, more time with her even though she was clearly suffering. was it you wanted her less drowsy or that you knew the morphine could suppress her respiration? forget it, i don’t even want to know. i feel sick.

    this admission is beyond hard to swallow. i just don’t get it. so many things you’ve written in the past makes sense now. you actually did let her suffer pain in the end. you’re right, you were selfish and you can’t ever undo that. now i understand why you can’t let yourself off the hook. you actually do have a reason for tormenting yourself the way you do. it seemed like you were just not grieving well or maybe had other mental health issues interfering. but here we have it, the mystery is solved. now your constant apologizing to Jennifer and begging for forgiveness makes sense.

    i can’t even believe this. i can’t believe your husband let you win. my god. where was the palliative care team advocating for her?

    i can’t read one more word. i’ve supported unravel financial and now i read this? please get some help this is very disturbing.

    • Unravel Pediatric Cancer says:

      I did send you a email .. to try to help you understand.. But I will also just post this link if you happen to be interested.. Because it seems so many parents in my shoes look back with guilt and regret.. even if we shouldn’t.

    • Caitin says:

      These blog posts are moments from a life, not the whole life itself.

      It’s so easy to sit in judgment of a stranger on the internet as they share their darkest moments and bravely face the world so that others who may be going through something similar will not have to feel alone and ashamed.

      I pray that when you find yourself facing your darkest moments, that you may receive the grace that you are so unwilling to share with Libby.

    • Coyo says:

      Are you serious?! Do you consider yourself perfect? Do you have children? If you do, pick one, and then also pick a way for him/her to die. Yes, die. If you don’t have children, think of the person you love the most, and then kill him/her. How would you do it? How much pain would you have that person go through? How often? What if right when you decide it’s been enough, something could’ve saved him/her? Did you make the right choice? Did you -and those around you- suffer enough? Too much?
      I ask again… are you a parent? Have you ever felt sorry for hurting your child unintentionally, or seeing him/her suffer and even when you have tried everything, you can’t ease his/her pain -whether it’s physical or emotional?
      Have you ever felt judged? Have all your decisions always been the right ones? Are you sure?
      Regardless of your answers… you don’t get to judge Libby and/or her family. Really, you shouldn’t jugde anyone, because you simply don’t know anything. Hopefully you never have to go through something as terrible as Libby has. Or maybe, hopefully you do, and then someone comes and judges you in the same way you are judging Libby.
      The thing is, if you KNEW Libby, if you had known Jennifer, you would never had said something as cruel and heartless. What Libby shares is only a little bit of her truth… you really have no clue. And I’m sorry thre are people like you in this world. I am sorry for those around you, because you don’t love them. True love doesn’t judge. And I’m pretty sure you walk around judging everyone by your own rotten standards. Yep, I’m judging you… I don’t love you.
      Please do not come back to this site to insult Libby. We don’t need you here.
      “And that who is free of sin, may he cast the first stone.”

    • Kimberlee says:

      What’s sick is the fact that you can say these things to Libby or anyone for that matter!!! EVER!!!
      Libby is an amazing mother, in an unfathomable amount of grief. I have no doubts that in those moments that she did the very best for her daughter!!!…. you can’t honestly know what you would do in those moments , unless you’ve lived through it!!
      Morphine and methadone suppress your breathing BIG TIME… I’d imagine as a Mom, I’d question how much and wonder if I gave her to much that it would be what caused her to die….??? I’d wonder if I had that right – because wouldn’t God call her home when he’s ready! All along….God knew the time for all involved…..My thoughts would be all over the place…Jennifer and Libby also communicated through her eyes and blinks, if she gave her to much meds could she have that window into her precious heart/ soul, in a way only a mother knows how to tell what’s needed! ?? Even for me these are guesses, and I truly can’t imagine the horror they all went through! I am so very sorry, Libby! My heart is breaking for you, it sickens me to know how you’ve been treated….

    • Mae says:

      I don’t know what I would have done in this situation, not for myself, not for Jennifer. How can we *know* what was right? Would Jennifer have preferred her mind clouded, saying goodbye to her mom earlier? Or would she have elected to stay more alert, to have more time? I sort of suspect the latter.

      I went through major surgery as a child (I was seven); I remember waking up in *tremendous* pain in the ICU and absolutely refusing strong pain medication. I remember taking the pain; I remember that it was indescribably awful, and yet strangely bearable. Every time it was time for a new dosage, I again chose less medication, more pain. (Later, my mom was astonished at herself for letting me choose, but at the time she was just trying to do the right thing, she felt I was suffering enough and that taking away my autonomy would have made things worse for me mentally). I don’t know that my physical pain then can compare to Jennifer’s, if hers was too much for her. But you know what I do remember? My mom. I remember my mom just being there. For me. Knowing that she was there was everything, even if it was just so that I could cry out to her and complain. To know that I was heard and not alone.

      I also had several (at the time) painful procedures before and after that surgery. I would *always* fight the effects of the medicine. Both the sedative I got prior, to ease (the severe) anxiety I had; and then the mask on my face that put me under, the syringe… I hated not being aware, not knowing what was happening; hated the feeling of slipping away.

      I understand that my experience is not Jennifer’s; she probably experienced the world very differently, and I understand our prognosis could not have been more different. All I can offer is one child’s memory of severe pain and fear. And how in that time I just wanted to be with my mom.

      I barely ever leave a comment here and haven’t done so in a long time. And I do not like to talk about this time in my life, I’m actually shivering on the inside here. But Ashley T, that’s how strongly I feel about your words. I hope my comment is okay with Libby.

  15. Nadine says:

    I wish to God no parent ever had to make these horrendous, impossible choices. I can only imagine how there would never be a right answer, a “good” decision. I think anyone would feel guilty in some way, because it’s a conduit for the immense grief. What matters is how much Jennifer was loved and cherished in her life, and that she still is. Except it is now not just by those who knew her, but so many more. And how that love carries through to Unravel, not just for her, but for all of our kids.

  16. Veronika Zappelli says:

    I think about her everyday. She has forever changed my life and how I parent my girls. Sending you love.

  17. Jen says:

    In response to Valerie T. Shame on you. You have polluted this place in which Libby has opened herself up to be able to process the unimaginable grief and hell that she and her family are going through. How can you place judgement on this? You have no clue what it is like to walk in her shoes, and to be in the thick of your 6 year old daughter slowly dying. For me, even writing those words is surreal, and I cringe to think about either of my 2 children (aged 6 and 8) passing away. But that is unfortunately Libby’s reality and she loved and cared and was mom to Jennifer up to the very end. How dare you place judgement and say the things you said.

    Libby. I am a mom from NJ who stumbled upon your blog and now Jennifer and your family are in my thoughts every single day. I am so sorry that Jennifer is gone and so thankful that you have shared your story and enabled a whole network of people to be active and not just sorry.

  18. Jen says:

    Sorry. Not Valerie T.
    I meant to say Ashley T

  19. Lisa says:

    You made the right choice to love your daughter through every last breathe. This was an impossible decision for you to make for your precious Jennifer.

    Thank you for your bravery sharing.

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