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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September 21, 2018

You ever been in the water.. and you start to get tired and your stroke gets slower and you sink a little deeper .. or like when you are in the current and you stop fighting it and let it pull you …

That’s what grief is like I think..

Sometimes its too strong and you simply are unable to resist its pull on you.. Especially in the beginning.. because really you are only just learning to swim. But then you learn.. you have to right? So then you feel it happening and you kick against it.. Just a few strong kicks will bring you back to the surface and you can gulp in air.

It happened to me today.

pull. kick. kick. breathe

.. but first I’ll rewind..

Two days ago I took my 4 younger kids with me to go see their sister. .. the living .. growing.. visible part of her. They.. especially our middle two have been asking questions over the last few months.. Hard questions.. The same ones over and over again. ..

mama why did she get cancer? but mama did it hurt her?

Actually the hardest ones aren’t the questions but the statements.

mama when I turn 6 and get my brain tumor. Mama when I die young..

No matter what I said back.. no matter how I fumbled to find the right words.. it was never enough. So I asked if they wanted to go ask the dr. And the answer was an emphatic yes.

So we did.

We parked. Nicholas emotions boiled over.. He yelled.. he doubled over in the car and screamed at me. He hurt. He was scared. I knew that.. but all I saw was a angry hurting little boy. So we waited.. and eventually he was ready to talk.. Simple words exchanged. Understanding.. promises.. and questions.. and then ..

just a few minutes alone ok mama..

ok son.

And he was ready..

They were honored to get to sign the check for Dr. Monje.

We walked together.. each child in their own place .. heart and mind. Me too.. but them first. Today. Them first.

They could see her cells. . And they wanted to.. Charlotte went first, she was so excited. Hand in hand with Dr Monje down the hall. The girl that was just a baby when cancer first entered our world..

Charlotte and Pinkie were her constants… what she needed ..

Bridgette followed .. My on her terms only girl. She too went down the hall hand in hand with Dr Monje.. I had this moment watching them.. knowing this woman had walked a journey with each of my girls..

She never met Jennifer in life.. but she saved her in death.. and in turn all of us..

And so I chased them down the hall to join Bridgette in meeting her sister for the first time on this side of the rainbow.

pull. kick. kick. breathe

I barely took any pictures.. I just lived the moments with them.. rare for me.

Boys were next Nicholas asked to go alone.. And Jonathan allowed me to go with him.

My daughter a balls of cells.. I could see them this time with my own eyes.. big enough to really see without a microscope. Everything in me sprung to life. She was there.. oh sweet baby.. Every cell of me was on fire.. desperate to grab that flask and hold it to me.. to sing to her.. to whisper to her.. to comfort her.. To shake her.. to beg her..

please please please come back to me. .

please jennifer please

In a moment.. so many thoughts and feelings simultaneously reverberated through me. But it wasn’t my day. This was their day..

They all wanted to know.. to understand.. to learn..

And then they asked her their questions from the list they together had prepared the night before. .. hard ones.. intelligent ones.. and pure ones. And they were kids.. coloring and talking over each other.. becoming entranced with a white out pen.

At one point I sat on the floor and asked her the question that had been tearing me up.. slowly eating me alive since a recent trip I took to another lab..

wait.. rewind ..

(paraphrased from a warped memory) “With the ability to biopsy untreated DIPG tumors we can study the true disease”..  which translated simply to me.. that my daughter may not be useful anymore. .. That she was yet again. Failed by me.

I was going to write to the other researcher.. and ask.. Just ask for honesty if kids tumors that had been treated would be obsolete. .. But I couldn’t seem to do it.. so I just let my stomach eat away at itself .. and my fear steal me of sleep in the night..

With a tantruming Bridgette on the ground in front of me and a pressure in my head pushing me to just ask.. I found the words for the truth I feared.

But with biopsy now .. with those “virgin” untreated cells what does that mean for other treated cells…?? I cant remember what I even said .. but I remember her answer..

I remember in a room vibrating with the energy of 4 kids.. of a crying toddler.. there was a vacuum… that erased everything else going on.. That only allowed for this moment to be happening..

I remember her looking down at me ..

oh Libby Jennifer is so important. Jennifer taught us so much.. about how DIPG progresses.. about how its progressing in these kids..  And Libby we have untreated cells of hers too. .

Jennifer will always matter.

You bet your ass she will.. . this pictures shows that.. But it was so important for me to hear these remaining pieces of hers always will too..

That vacuum held me for a minute more.. and then the room broke open again ..

kick. kick. breathe.

Really breathe.

I exhaled.. maybe really for the first time since I sat in that other wonderful researchers lab… as he shared the hope of the future with me. .. that dissolved her past.

I needed to celebrate silently afterwards so we got cold yogurt and headed to a new park

And back to today.. I am the assistant coach for our schools 6/7 grade volleyball team… Its been a good experience so far.. (maybe not for the girls since I haven’t played since I was their age!!!) Today was our first game..

I was watching these girls..  incredibly nervous during the game.. Emotions that I wasn’t expecting them to have, because I have never had a daughter their age..

Jonathan and Jennifer.. the very best of friends.. what would that look like now?

And in that moment the image of her came to me.. The memory of those cells that looked like grains of sand washed over me. .. And I looked at these girls.. And I felt it .. that current of emotion.. The burn in my eyes.. the itch in my legs to get up and just run. To run. And succumb. . to allow myself to go under the surface for just a minute.

kick. kick. breathe

kick. kick. breathe

kick. kick. breathe

until now.

now buggers i just miss you

now i am pulled below the surface…

until tomorrow when i will




..until there is a cure..





  1. Karen Zoucha says:


  2. Cece Gannon says:

    So moving……you have touched so many. I am struck by your courage and perseverance …it just keep unfolding. Bless you.

  3. Meg says:

    Libby-this is amazing-doing this with your kids. For your kids. I never know what to say, but I’m still with you. Still reading. Still remembering JLK.

  4. Lorraine Bodinger says:

    Still beside you in your thoughts. Still beside you in your hopes. Still beside you feeling some of your pain but never knowing the reality of it. Butterflies fly into our yard everyday and remind me of the importance in finding a cure for DIPH. Jennifer is remembered and missed daily…until there is a cure

  5. Kendra says:

    <3 #Love4JLK

  6. J BarneS says:

    Still reading Libby…still get choked up…still remember..she was born the same year my twins were born…I remember her daily!

  7. Stunning writing, as always. Lovely to see you writing again. I have really missed you. Remembering Jennifer always x

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