golden tours

Last week we took members of the Unravel team to go tour some of the labs at Stanford. To learn about the work they are doing and who we may want to fund in the future. I planned on writing all about it. but as things do in this new life of mine.. I was taken away from just the science of everything to my heart.. my love and my pain… but now I am able to share.

First thing I have to say. WOW what an incredible place. The collaboration that we saw is a force to be reckoned with for sure. But for me the two biggest take aways are that there is so much potential .. new ideas and thoughts and innovation that are ready to happen.. but they need the money to make it happen. And how much they care. About their work and the science, about each other and about saving our kids. They all are invested in the idea of unraveling pediatric cancer and know that the once that is done all cancers will crumble. The day was full of smart talk and sad subject manner… but also so full of excitement and hope and new ways of doing things.. since we all know the old ways aren’t working.gold5

Tony had never been to any of the labs before.. I had the opportunity at the nano course. He was nervous as we were getting ready to go. I was remembering how many Mondays I spent like this.. trying to get ready and loading up my daughters. .. Oh how I loved having daughterS. . And we rushed out the door. Always so nervous we would be late. She cried every time. She never wanted to go. Once there though she was ok for the week. She never cried on the way to treatments leaving our little palo alto home away from home. It was only ever the mondays.. she would cry and hold Charlottes hand. And beg me not to take her. I always did though. We had to fight. We had to try to save her… buy some more precious time. Even though I knew it was possible I never really thought that we wouldn’t get it.

My girls and I would leave while it was still dark, but always by the time the sun came up she was in a better place. I miss those weeks and those drives. I know how twisted that must sound. But its my most vivd memories of her.. and it was such a sacred time. A time she leaned on me and into me.. both literally and figuratively. She grew up so much in that time. I got to experience a delious taste of what a slightly older daughter is like. That we talked.. real talks together. And we joked… real jokes together. She became my friend over those 7 weeks.

I miss my daughter, my friend and the lifetime of potential for what that relationship would have grown into.

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Its raining here. I love it. I yearn to run in it. But yesterday we drove in it. And then I saw the sign I remembered. One of the only times in my life before all of this I truly felt God .. that I knew he was sending me a sign .. through the hardest time I thought I would have to face. I was driving that time to Stanford also. For yet another IVF or maybe even miscarriage appointment. And then over the freeway I saw the most incredible rainbow. It shone right into me. I knew then that it would be ok. That we would get to be parents one day. I cried a lot after that.. I doubted and I worried.. But I deep down I knew we would be mommy and daddy one day. And I knew the pot of gold at the end of that rainbow would be worth it.

She was. She is.

I had told Tony about it. Not when it happened.. but later. When it happened I felt almost crazy how powerful the moment was. How I cried tears I never had before. One of sadness but also so full of hope.. I cried at the knowledge somehow, someway it would be ok.

And driving to Stanford again. .. Knowing we would have the option to see that beautiful pot of golds cell line through a microscope I saw another rainbow. In the exact same spot as I had seen it over 7 years before.

But this time it wasn’t alone. There were 2. Two incredible and vivid rainbows. Ive never really been able to see the end of a rainbow before. This time we could. Right there on the 280 we saw it hit the ground. They disappeared and reappeared over and over again on the rest of our drive.

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This photo is a big fail to how vibrant they were

It was incredible and exhilarating. So different than the first time.. Im still not sure what it is supposed to mean.

We arrived and went straight to our first lab, . This was one I requested after meeting the lab head, Jennifer Cochrane, at the nano course. She had a flight to the east coast that day, but moved her flight so she could be there to meet our team. We were all so interested in it we went way over our allotted time. She and her team are working on engineering all sorts of ways to unravel cancer. One particularly exciting way is to get the drugs that can impact the tumors to the tumor in a whole new vehicle. One that has GPS to take it right to its desired location. Promising..incredibly promising work.

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And another lab. This one Jennifers own fellow is now a part of. The passion they have.. and the collaboration made this very impressive. They are working within genomics. .. something we are currently working to fund with UCSC’s Treehouse Project and our Team Glitter run. Whats great here is that all these people are working towards the same goal.. just covering different portions of it and working together on it. This is big.. and I hope one day we can get big enough to help out this project. But hear me. This is big and this is the future!

We ended the day with Dr. Monje. I loved hearing about what she is doing. How the progress her team is making will not only impact DIPG and pediatric cancer but also so many other white matter diseases, like multiple sclerosis. One great moment was when one of the people in her lab came up and asked her a question.. first I understood what they were talking about.. well mostly.. And how much this is a team. How dedicated and committed her while lab is.gold3

But what struck me most was how she explained that part of what they are doing is learning the right questions to ask.. and they are learning this, in part from my Jennifer, from her tumor cells..  Hearing that.. it made me feel proud of us. Made the sacrifice of that time with her right after she died completely worthwhile.

We got to see her cell line. We went in small groups, the first was me, Tony and one more team member. Jennifer sent us each a sign. One just for me. And one just for her Daddy. I appreciate the signs. They mean everything to me. But damn it I want more. I want her… more than just in a microscope.

I feel like this picture my emotion shows in my face
I feel like this picture captures my emotion. My want and my angst shows in my face

This time it hit me in  I felt so childlike in that moment. As I looked to Dr Monje and asked.. “is it really a piece of her. If we tested it would we be able to tell its Jennifer..” I felt exactly how Jonathan looked when he wanted to know if Jennifer had walked in that one spot. I had such a need..such a yearning for the answer to be yes. Luckily for me it was.

you are still here baby girl

my first pot of gold

you deserved better than this

.. but..

you are making a difference

and helping me make one too.

gold…until there is a cure..

 

 

13 Responses to “golden tours”

  1. You ARE making a difference, and I’m so proud of you…. and so happy to hear about this research. Share more when you know more, please.

    In terms of the double rainbows and what they mean this time? I truly, deeply believe that’s your baby girl telling you that she’s ok, and to remind you to look back on the hope from before and know that some day you will be ok too. While I want it to be soon, you’ll find the way to that in your own time. Hang in there!

  2. The double rainbow was most definitely from her, showing you that there will bbe other pots of gold for you. She is ok, and I am sure she is happy.

  3. Oh Jennifer, go glitter girl go!!! Unravel the medical mysteries!!

    Rainbows are a symbol of God’s promises….a promise of motherhood and a promise to survive (no matter how long it takes) through the loss of Jennifer for you, Tony, and your surviving children and to make a DIFFERENCE!!

    Hugs!
    Janeel

  4. You and your entire family amaze me- while you are grieving your baby girl, you are truly making a difference in saving our kids Libby.
    LOVE4JLK ALWAYS

  5. Oh Libby! Jennifer, you, Tony and the Glitter Team are doing amazing things! Change WILL happen. Its already happening. Jennifer, we LOVE YOU!

  6. This takes my breath away. You, Unravel, and Stanford are doing wondrous things. Thanks for sharing bits and pieces of the tour…I know in my heart that Jennifer is a huge catalyst to help unravel pediatric cancer.

  7. Yes she is making a difference, through you and with you. Up there with God as she is, not even death can take away her incredible light.

  8. I was holding my breath that they would say “yes, it is Jennifer” What an emotional day for you all….Jennifer is still here and making a difference in so many ways.

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