proud

I had found out about a fundraiser earlier in the week that was happening tonight. Another family lost their beautiful daughter to the DIPG beast and started a foundation a few years back.

good people doing good things  <– check them out!

They welcomed my mom and I and baby Charlotte to attend. I debated until 30 mins after we should have left whether or not I should go.. . sick baby…I was tired and wanted to blog.. and it scared me. I went and I am glad we did.

Driving through palo alto.. a city we spent the bulk of the last of her life.. I had to look down at my lap as we drove through those familiar streets. I felt

.. . cold and lonely. .. . full and warm.

One town that fills me with such contradictory emotions. I know it’s not time to go back to visit the hospital yet.

I wanted to go to meet the founders of this organization. To learn from their experience and get advice. There are so many options and ways I can go about trying to make a difference. Trying to figure out the right path for me and my family…  Figuring out the way I can best utilize my talents is proving to be daunting. I don’t pray for specifics a lot.. but I have been for this. To guide me the right direction.

They were gracious and open. Willing to help me in any way they can. They are dedicated to finding cures for pediatric brain tumors and are willing to share what they have learned to help me find my way to help the cause.

Charlotte… red eyed and snotty nosed still drew a lot of attention. In particular, the other reason I wanted to attend the event.. Dr. Monje.  She is the researcher that has Jennifer’s cancer cells.. the one whose lab was able to successfully create a cell line from them to learn and to share.. to collaborate and give a piece of my girl a chance to travel the world in search of a cure. She was drawn to baby Charlotte without knowing who I was. (perhaps pushed by a sassy pants 6 yr old???)

Dr Monje is the one who inspired me to create the fund in Jennifers name. And was willing to be interviewed for the Bay Area Proud segment that covered our family.

She was genuine. And kind. Smart and dedicated.

Just like my Jennifer’s doctors and social worker. We were so lucky. I only knew them 3.5 months… but I miss them. The interactions we had.. the way they made my daughter smile..

She spoke of a trial in the works for DIPG. Something to give parents hope. The only thing left after hearing there is no cure..

Driving home though I started to think .. and hurt .. for her and other researchers.

Somebody has to be the one to physically get the tumors out of our childrens bodies

. .. . damn.. .

What a gift they give us by doing that. I told her that if I hadn’t had the option to send Jennifer to her I think I would still be  laying in bed holding her.. telling Tony I needed just one minute more. Instead about 60 minutes after she died I kissed her head and walked out of the room… with Tonys assistance if I’m being honest.

Those last 36 hours changed her. Altered the way she looked.

But

she was truly still so beautiful.

and Forever 6.

That couldn’t be easy to.. well… to do what they had to do to rid her body of those tumors and to help her make a real difference in this fight.

She explained to me that DIPG is truly just horrifically bad luck. The wrong cell changes the wrong way at the wrong time.. BAM. DIPG.

So when I thank her/them for the sacrifice they make it isn’t for Jennifer. No. its for all the other kids that I love.. all the adults impacted by cancer that will benefit from finding a cure and treatment for the hardest cancer to unravel..

So many pieces to this puzzle.. so many layers of grief.. so many sacrifices from different people.

I also found out only 1/3 of the donated tumors actually make it to be viable cell lines.

That’s a good job sissy.

Mommy is proud of you.

I love you and miss you.Gilroy Family Photographer | JLK Glitter Shoot-52

44 Responses to “proud”

  1. I am still here reading (….or maybe its stalking lol) but I still remain speechless. I am definitely more aware of pediatric cancer and grateful fir every day I have with mu loved ones, especially my son.

  2. I am still so touched by your story. I looked forward to your blogging and stories of your sweet little girl. I am amazed at how strong you are and pushing thru this as best you can. Praying for you

  3. I’m not surprised that her cells could be used because she was such a special girl. Thank you for sharing her with all of us. You are a wonderful, brave mother who has touched and will continue to touch so many with your family’s story. Sending you love and hugs.

    Vanessa

  4. Amazing! JLK is amazing! Thank you for sharing this information with us. I am beyond proud of u Libby. God Bless your family.

  5. Wow…. just wow. I love you for your generosity in the name of Jennifer and others to come after her. God bless you.

  6. Libby you are amazing. There is a bigger purpose out there for you. Jennifer will guide you to it a glittery path along the way. These hard days will get easier with your new focus. I know when your foundation is up and running it will take off. Your blog helps so many people. You are an inspiration as a mother to all of us. Look for her signs as little as they may be ♥

  7. What a wonderful concept, that a piece of JLK is traveling the world in search of a cure. I know it would be better to have her here of course, not traveling as such. It makes me think of all the different people she has touched in her journey and all the people that she will continue to touch in the future. Thanks to your bravery and generosity, she will be a part of the cure we all hope will be had one day. Sending peace and love your way today <3

  8. Jennifer is SO strong…and I am saying ‘is’, not ‘was’, because her legacy on Earth is still going strong, and her impact is being felt all the way from Heaven. I have read every single blog of yours since I discovered Jennifer’s story, about a month before she passed to Heaven. I don’t comment often, but I just wanted for you to know that you are the absolute STRONGEST mother I’ve ever known of, even if you feel like you are failing as a mother to your children (you are NOT). God bless you and your family.

  9. Still reading…proud of your steps forward Libby. Ready to fight with you.

    JLK will leave a legacy of inspiration and hope! A true guardian angel.

  10. I have been following your blog from the beginning but never felt worthy enough to comment. I am from Gilroy, grew up there from the time I was 6. Something about being from a small town like that makes me feel connected to people from there. Your words about your Jennifer are truly inspiring, heart breaking–I never read a blog without crying, but so very inspiring. I am a new mother and just can only imagine through your gifted writing what you’re going through and reaching out through a blog comment box doesn’t seem like enough, but your willingness to share yourself so honestly is so brave and appreciated. Your daughter is such a light even in death, I’m proud of her for you. God bless you and every member of your family Libby.

  11. The fear of being a Mom and having three children makes me want to be on your team to help fight that beast. Let me know when your ready and what needs to happen.

  12. Oh Libby, I can not even finish reading. My sobbing scared my 6 year old, my heart aches so deeply. Every single day. You are my true life hero.

  13. Good job cells for “cooperating” with the researchers. Good job Libby for keeping your little girl positive and for the strength and bravery it took to contribute to research. Love and prayers always.

  14. I’m so proud of you and happy for you that you went! I know it had to be so hard to head out the door – so glad it was the right decision, and I’m thrilled to know that Jennifer’s cells are in that special 1/3!

  15. I hope you can be “proud” of yourself too… For going to the benefit, for getting out of bed, for being such a wonderful mom to your children…all of them!!!!

  16. Reading every word…thinking of you and Jennifer every day. Praying for you.
    Jennifer is already making a difference, leaving a legacy. Who knows how many lives she will improve? Maybe save?
    Amazing. Xxx

  17. Wow. That is truly amazing. Really, really incredible. I am so glad you went and were able to learn that information.

  18. Libby you are truly amazing, JLK is helping you along with your journey, I have no doubt that you will make a huge difference!!!!Lots of Love and hugs

  19. She has done good. She is doing good. So are you. I am here ready to be put to work. I will help you fight. Sending hugs and strength.

  20. I read….every post…I read. And every post brings me to tears. If you have done one thing you have made me realize just how precious every moment of every second is with my kids. Thank you for that….thank you for your bluntness and honesty. You are truly amazing….you may not feel like it, but know YOU ARE AMAZING…it’s the glitter in your veins-born through your heart that keeps you going!

    Many thoughts & prayers,
    Erin (a fellow nestie)

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