Research and family

better together

  *ahem putting on my unravel Libby hat * 

I was honored to get to be part of an amazing and inspiring conference. It was host by PBTF (pediatric brain tumor foundation). I was in the company of around 10 motivated foundation founders and 71 brain tumor researchers.

It was humbling to say the least, to be by far the least intelligent person in the room.. but also super educational – I even tried to figure out how to make that sentence sound smarter.. but thats the best I got-

We heard about immunotherapy and clinical trials. I was introduced to a few incredible researcher led programs, which was so invigorating to see them helping further another scientists work to be successful. It means one winner in the end. Kids fighting cancer.

One of these programs is organizing big data to strengthen others ability to run their investigations. And another program to help the JR researchers get money to get started and to further test others results for accuracy.

In the non profit track meetings, we talked about ways for us all to stay engaged and working together over the year. We discussed the problems we see plaguing pediatric cancer patient families… and what we as a community can do about that!

ok.. so thats about the best I can do with talking about the conference with my Unravel founder hat on.. It was well run and a true honor to be allowed to attend..

BUT- I am bursting at the seams to put my mom hat on and just share..

It was pretty remarkable.. sitting in the back of this room filled with researchers.. some of which we have partnered with.. Many I have just fangirled over and some that I had never had the pleasure of meeting.

And just being an observer of these people..these scientists.. in their element was eye opening.. I am used to talking with them at a table with me one on one or in a small group.. But being a fly on the wall of sorts allowed me to see them in a whole new light.

Ive always said my daughter died not for lack of ideas.. but a lack of money.

these days so full of hope and promise

sissy 
you were worth so much more than we gave you

But I learned its so much more than that. Because its not because a lack of passion or desire on behalf of the researchers either. . not by a long shot.

They fought with each other. I mean they really challenged each other and scrutinized each others ideas and processes.

They asked questions. And they fervently detailed what they were working on. They were honest about struggles and places that improvement is needed.

They genuinely cared to figure out ways to effectively find treatments for brain tumors. They were all working on slightly different aspects of this disease..

In the case of DIPG they realize that buying kids a few more progression few months is a gift.. but not enough. So while that is being accomplished.. working towards removing the now terminal prognosis is the real goal.

this was their version of dumbing it down

And though I did not get to spend much one on one time with many of these researchers.. I did somehow end up with the right one.

Even..

wait for it..

I met a fella from the NIH I adored! whaaaaaaaaaa?!?!?

oh wow.
it was you.. maybe you and Mckenna up there..
you wanted me to meet him. you knew I needed to know

As he described his lab its “grass that feeds the science “. Basically his lab has the capability to support all the researchers that need it. It made me remember to look for the good even under the heaviest of rocks.

He openly struggled meeting me and some of the other bereaved parents that started their foundations.. But we were proud to put beautiful faces to the cell lines he and his team are working with.. I told him as we parted ways that he made it hard(ish) to hate the NIH.. he replied that hearing that I felt that way about NIH and ACS broke his heart .. and I gave him my honest reply.. Losing my daughter due to lack of funding broke mine.

But see.. I know he will go back and work with the same drive and determination I believe he always has.. And the same heart. Honestly. I believe he didn’t need more motivation or drive ..

The gift was mine. . now I know another person cares about my daughter.. I know another person is interacting with the last living pieces of her with gentle and loving hands..

And if I had gotten nothing else from this conference knowing that.. Putting a face and hands to that for me was priceless.

thank you sissy miss

At this conference..sitting back as Jennifers mom it .. it was what I wanted to see happening. ..

I want the people that have the capability to find the answer, to be really motivated to find it.

These pictures are still hard for me.. these images burned into my memory still of the time that the cancer was slowly stealing her.

I want them to have that healthy amount of ego to simply want to be right.. But enough to heart to care more about these kids than that. Our kids. The child that once was my living daughter. Its such a twisted catch 22… because once she was diagnosed.. it was already to late for my Jennifer.

This is what she needed… I bet it was happening then too.. but I assume that then it was also a lack of money holding them back.

As a friend to far too many kids recently diagnosed… its everything they need.

And its up to me to help these researchers… these yet to be diagnosed families get the funding they need to truly save these kids.

What I saw .. perhaps it was a feeling more than a particular word.

It is hope. 
It will lead to change. 
And that is a very very good thing.

and you.

you little girl.

you are still right in middle of it all

your cells. still fighting.

i saw the future .

you will win.

one day buggers

you will beat this thing.

..until there is a cure..

2 Responses to “Research and family”

  1. So glad you got to be there and share Jennifer’s story.

    FWIW, I don’t know you, but I was on an airport shuttle in Seattle last weekend, sitting across from a little girl who was a ringer for your beautiful Jennifer. It was hard not to stare. Made me think of Jennifer, and you, and the rest of your family, and reminded me that I promised to never forget.

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