nano course

I was invited to this thing called a nano course here at Stanford. Its a small invite only week long conference. The basic idea is to train some parents/foundation people to be liaisons for the medical community. What that means is much of what I was taught went over my head!!

Some easy take aways I can share now ..  A lot of the stuff we learned wasn’t specific to childhood cancer.. but translated to all cancers. Like a 3D gel that can mimic tissue better than other mediums. .. a big step up from a petri dish, but more accessible than a animal model. The head of that lab was so jazzed and into it. It was pretty remarkable to see.

That leads me to my next easy take away. There are so many cogs in this machine. We heard from multiple different heads of labs. That are all working towards different specific goals.. but collaborating for one purpose.. dare I say.. Unraveling Cancer!

One such lab was the bio medical lab. I was happily surprised to learn that they are doing a lot of the same things as Jim Olsens lab over at Project Violet…with some slight variations. Best part though was hearing that they are collaborating! Worst part hearing that they need 1.6 million to get the project off the ground. It literally makes me a feel a little ill to know that treatments are being held up by money. The real kicker.. the woman running the lab. Her name..

Jennifer

Another topic discussed was how finding treatments for DIPG can have a great impact on other diseases..  I’ll give this a shot.

There is something called myelination.. the creation of myelin which is the coating of the axon. Think of it like this.. the axon is the phone wire connecting cells to chit chat. .. the myelin is the coating on that wire. Mylenation.. the act of getting that “wire coating” happens throughout our first 3 decades.. but has 2 big bump periods 0-2 and 6-8. The latter being when DIPG tends to show up. They aren’t entirely sure why it doesn’t also occur in the 0-2 range but any brain tumor in that age is rarer. So the brain likely has some extra protections in place.  Understanding and fixing how these cells start going myelination crazy in DIPG (they have shown there is too much) and how to get it to calm down can lead to progress with disease where the mylen is not being formed enough.. like in multiple sclerosis and spinal cord injury.

I learned lots of stuff like that … and even more stuff like that I tried to learn but mostly just took notes on!

I missed the first two days. Those covered some fundraising stuff (shoot!) and some treatment effects. Basically what Monjes idea, that my Jennifer was crucial in developing, radiating the whole brain really means for our kids. “Luckily” much of it was long term results… and well we all now know long term is not a real concern yet when it comes to DIPG kids.

This morning was awesome though. Her Dr.. really I should call her our doctor was a presenter. One day at the end. I am honestly not sure if it was while she was on hospice or the day she died I was talking to Dr Partap on the phone. I told her that her job sucked and that she needed a singing telegram.. She said she had never had one so I of course promised to get her one. partap

I keep to my word. Queen Elsa my Jennifer’s favorite Frozen character came to serenade her most favorite physician, Dr Partap, oneelsa of the greats. Jennifer loved secrets and tricks and this morning combined both of those things. She would have loved it so much. I think she was probably really proud of me for pulling off a twofer.

Some of my  favorite lines:

                                            Jennifer loved the Disney tale of the Ice queen and her snow
The story of Isolation is a story we all know
Her doctor’s courage was a swirling storm inside
All the joy we shared and the tears we cried
and
Let it Go, Let it Go
It won’t hold you back anymore
Let it go let it go,
Don’t let Cancer slam the door
I don’t care
What they’re going to say
Let the storm rage on
You’re gonna find a cure someday

You know it was really meant to be a bit of a joke. But it morphed into so much more. Even the singer had tears. I like to think all of our kids were there laughing and watching us in that room. .. I can imagine Jennifer bent over covering her mouth with one hand and pointing with the other.

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miss that sound. .. miss those little hands.

And because Jennifer was there.. somehow I know Brecken was there too.. That won’t make sense to most people.. But I needed to say her name too tonight .

My biggest take away hands down was these people care.. I mean really care. I get incensed when people say cancer is just business.. they don’t want a cure. To me this is a truly ignorant and genuinely insulting statement. . I found out, because I asked, who was there when my daughters tumors were taken. Dr.Monje was there. A mother of her own beautiful kids… she stood there while mine was having what killed her taken out. Likely within 2.5 hours of her death.

Jennifer was beautiful. Always. She looked very much like herself when she took her last breath. I know they cared. I know they took her purple jammie dress off of her so carefully .. And even though she could no longer feel any pain.. I know they moved her with gentle.. loving and respectful hands.

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Just like they do with her cells now. There is a reverence when they are being handled. Not just because they are so valuable to the scientific community.. but because she is valuable to them. I know they don’t allow their minds to connect our kids cells to our kids when they are working with them.. but I truly believe their hearts are telling their hands and their minds have no say in the matter.

I saw her cells. Funny I didn’t feel at all emotional about it then.. but now I am. Actually I guess it started right before I left.. I wanted to ask if I could run upstairs to the lab just to say good bye. To whisper to those cells floating around.. to the part that’s her.. to say I love you baby girl and I am so proud of the work you are doing. .My Stanford girl!

And then I imagine my voice getting lower to say grow tumor grow.. such a change from the song she sang here. .. grow tumor grow.. because one day we are going to fucking kill you.

Because we are going to save parents from all the heart ache I am feeling now… From the heartache I was able to share and hear shared this week with all these parents and loved ones of kids taken far too soon. Our kids all suffered in ways I would like to say are indescribable.. but unfortunately we can all describe the trauma they suffered in painstaking detail.. sometimes without words – we explain.

During a lunch one mom said she wasn’t scared of dying.. she was scared of suffering and we all nodded in agreement. Misery loves company as they say.. and in that moment it was true for me. I feel such guilt. That she hurt so much more than she needed to. I have always imagined other parents helped their kids stay ahead of the pain better than I did.. Somehow it was cathartic for me to hear from somebody else’s mouth that they are scared of the exact same thing that I fear.. for the exact same reason.

Every time we ate together we talked.. I was extremely fortunate to be recipient of all sorts of advice. .. from celebrating

.. oh that was so hard to even type…celebrating her birthday..

to healing faltering relationships and blowing off ignorant and cruel people who want to say they “connect with” and “see” my daughter, and tell me she is suffering still.

I felt a kinship.. a connection and a bond can come so quickly to me now. With people that have drunk from the same bitter well. .. that know. Each story different. Each path different. But they know. I wish sometimes I could disappear in a crowd and shed this life..

Sometimes I just feel so alone in this new world.. where everything and nothing is changed. I am grateful for moments of respite from the loneliness.

But now it is back. With a wicked vengeance.

So I will try to remember. . her purpose. her new mission. her joy and her simple power in her smile.

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…until there is a cure..

21 Responses to “nano course”

  1. I know Jennifer is proud of you. We all are. We are so proud of her. You both are on your way. Making changes. We love all 6 of you. ♡

  2. Hi Libby,
    I was at the mall two days ago and I saw that music video. You know the one with the yarn. I couldn’t hear the music, and I don’t know the song, but that video is you. It always will be your story, with Jennifer and with your babies. I thought of you. I reflected on Jennifer, as I bought clothes for my little girl who is going into first grade I also thought of cancer and how next year she could not be here. Morbid thoughts maybe, but it’s the truth. In part that is why people with no connection with cancer are huddled at their computers reading your words. Because next year I could be looking to you for comfort, and you brought that home to us. Don’t take health for granted it could happen. Thank you for that. Your pain on the pages reminds us we need to pay attention to our children. I have caught myself looking at their eyes more than once. I also had full blown panic when my son kept falling down. I didn’t run into the hospital or anything but I paid a lot more attention to him. Your pain also reminds us it is to late for Jennifer but if we stick with you and help your foundation if it is my kid next year maybe Jennifer will be the reason she makes it. *Hugs for that Libby. You guys are so brave, and always thought of. Even in your darkest hours something somebody sees is reminding them of your Jennifer because of your words. When you go to learn new things and you share with us it’s like we are actually taking part. I wish there was a way I could do the fluttering but I have no money. Is there another way to do it?

  3. Libby, one day I will learn not to read your words directly going into work. I get so upset, tears filled eyes and then feel l sometimes drive everybody crazy with all my talk about pediatric cancer. I have had people tell me they don’t like reading my post sometimes because it’s “too sad”. Really? I never know exactly how to respond. But I also don’t care. Today though, I am glad I fell asleep last night before reading your blog. Forcing me (yes forcing because I don’t dare ever miss a post) to read this while sitting outside the hospital waiting to go in to take care of my critically ill patients. Today your words are a reminder of why I do what I do. Today you have reminded me to always use gentle hands, gentle words and to always always keep a gentle heart. ….I am more than thankful..so very grateful for your words this morning. Thank you….

  4. Crystal, your words are exactly how I feel. Exactly why I can never walk away and why I must do everything I can to stick by Libby …even if from the sidelines.

  5. I only wish I lived closer to you . I want so much to be a part of this in honor of your beautiful Jennifer. Even though I don’t live close I will do what I can from a distance. Your such a strong lady and so determined. I can understand being that determined because of sweet Jennifer. I hope one day that they make progress on this monster disease. So many young children suffering so much and being so young. As I have told you in the past and will continue to tell you that I on board in helping to raise money and awareness. It’s a honor to be on your team and to work hard to achieve this goal. I know when you have a true and committed team you can only win and not loose. I pray for you and Tony and your children every day. I know there are alot of people praying and wanting to help. If we pull together I know you will achieve your goals in this journey you are on. Going to do what I can to be part of this.

  6. Your Jennifer is so beautiful, and though I’m sure you don’t always feel this way, you are a so strong to be moving forward in such a thoughtful and purposeful way. You are making her proud.

  7. Elizabeth. . .all I can say is WOW!!! This post is just amazing, what you are learning, sad as it is for you, truly inspires all of us to think, learn and do whatever we can to make DIPG a thing of the past forever and ever. LOVED the singing telegram and fell like Jennifer was singing right along too! Sending love and prayers and wishes for hope for all!

  8. I tried to post this earlier and kept getting an error message….hopefully it isn’t a repeat! I love the singing telegram! I am sure Jennifer and her friends all loved it, too. She is going to do great things in this childhood cancer/DIPG world, but so is her momma. It is because of her, but mostly because of you, that I will continue to support Unravel until the day I die, or until there is a cure. I’m hoping the cure comes first! ♡♡♡♡♡♡

  9. I am glad you were able to connect with others…just so sorry it’s for this reason. I pray the funding is there soon, $ should not be what’s stopping a cure from being found.
    love & prayers for all of you.

  10. The pictures you took of Jennifer – that help us to so vividly understand who she is and was during her six years – are unique. It’s ironic or sad or wonderful – I don’t know which – that you took so many pictures that were so full of life. I know, from everything you’ve conveyed, that she was intense, emotional, passionate – so it makes sense that the photos reflect that. Still . . . one has to wonder . . .

  11. You and Jennifer are making such a difference in pediatric cancer. I just wish she was by your side…prayers for angel hugs Libby- you are amazing:)

  12. Went to Knotts Berry Farm last week with my 3 kids and 2 nephews. Saw several Make A Wish families and my heart hurt for them- I’ve seen them before but knowing Jennifer’s story and reading your blog has given me a new perspective- I wanted to go give the parents a hug. Libby you teach us so much…in so many ways

  13. You know what? You are FUCKING AWESOME. With you steering at the helm, we’re going to beat this stupid, despicable disease. No one should have to live through what you’ve lived through. Sending up a prayer tonight for these good-hearted doctors.

  14. Libby,
    I read your blogs quite often and would love to do more. I always feel empowered after reading and think to myself “maybe I can help” and I want to. When I read I usually don’t comment because I never know what to say but I saw you and your family around town today and the first thing I thought was, “That is one strong woman and one strong family right there.” You guys are always in my thoughts.

  15. Wow. That is incredible. Thank you for sharing some of what you learned. I have found the same thing in my experience with oncologists, our family friend who is one and the ones who treated my mom. They are in that field for a reason. Because they care. Deeply.

  16. Wow. The compassion, grace and passion of so many people makes me proud to be a human. And you and Jennifer are two of the best examples of this. Much love. Xx

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