I was lucky enough to be invited to go to Seattle to speak at a fundraising event for Dr. Olsen. One of our best friends and a member of our board, Renee came with me. I was happy not to go alone! We arrived at noon and jumped right into business.
But first we ate.. in the cafeteria there.. I couldn’t help but have my mind wander just a bit then.. to all the meals I shared with Jennifer in the cafeteria at Stanford. How we struggled to find gluten free food that was safe for her.. how all she wanted was eggs and french toast. How happy she was to finally get it.
Simple things I remembered. Simple things I am constantly remembering and lamenting lately.
We got to tour and speak with 2 different labs at Fred Hutch. We learned about their successes and struggles and most importantly what is upcoming. They both focus primarily on immunology as a means to battle leukemia They both had passion and love for their patient and they both had a confidence in their approach that was contagious.
I got to tour the whole facility again since it was Renees first time there. What I love about Fred Hutch is the history there the noble prize recipients pictures hung on the walls, like Dr. Thomas who pioneered the
stem cell transplant.! .But for me the most endearing part of their past is simply the very start of it, founded in honor of a sibling with cancer. What great things tragedy and love can do.
And its a place where everywhere you walk researchers and lab heads are totally accessible .. and collaborating with each other. Each lab seems like a family unit but the the entire facility is a giant extended family. Its a pretty remarkable site. And we are honored to be a piece of it.
I have found a friendship in another cancer mom whose son Zach died at the same time as my Jennifer.. This mom and I are quite similar. We haven’t laid down .. or even slowed down much since our children passed. We have both found a purpose and a place in the fight against childhood cancer. Walking past a lab I saw his name carved into a plate of metal.. and I chocked back a surprising package of emotion. For this boy I never knew and the mom I have come to care about. To see his name emblazoned on this wall in front of a door that will hopefully lead to a cure of kids still battling.. of ones yet to be diagnosed.. It was just incredibly moving.
We went to the hotel after that and then walked all around Seattle. We talked about Unravel and we gossiped like girl friends should .. like I so miss getting to go with my friends. I felt like I go the opportunity to be her friend.. even if just for a little bit again. I have friends still.. I am so grateful for that. But the truth for me is that I am still not a friend. They are mine. I am not theirs. Because I am broken. Because being mom to 3.5 surviving kids, 1 in heaven and trying to run a non-profit leaves room for nothing and more importantly nobody else.
I am sorry. And I am grateful for the people that choose to remain.. even though I give nothing in return.
The next morning I woke up missing Jennifer a lot. I wondered what I had dreamt about to make me wake up with such a weight on my chest.
We headed out and got completely lost trying to get to a different facuiltiy to tour their labs, (if you are wondering it actually wasn’t my fault!! a first!). Eventually though we made our way to the Ben Towne Center. It was worth the journey. It was a whole different kind of place then I have toured before.. smaller.. and hungrier if that makes sense.
Their entire focus is using our own immune systems to eliminate cancer.. their hope is to learn how to treat cancer in a way that makes it no different than treating a everyday virus. Lofty, a seemingly unattainable goal.. But what wasn’t lost on Renee and I was the realization that making tumors light up from scorpion venom was much the same at one point. But with support and most importantly funding that has in fact become a reality. .. A life saving reality.
Ben Towne center has one main approach, immunology, which is a current focus for many blood cancers.. what I think made them different was that they are looking to use this approach against all types of pediatric cancers. So every single lab is concentrating on a different type of cancer is focused on using kids own immune systems to save them.
The heart and the willingness to try something different is what we both were most impressed with at this center. We almost cancelled the appointment, but I am glad we didn’t. Though it is hard to find so many truly dedicated and innovative researchers when I know we simply cannot fund everybody to the level we want to .. it is also so encouraging.. Given the funding they can have the opportunity to learn from failures to get to the successes so that kids will stop dying. Kids will stop suffering through nightmarish treatments and their survival will be positive in all ways, not just “its better then them dying”.
Better than dead. Its true. But it will never ever be a good enough way for our kids to live.
Renee and I walked again. And found Jennifer was insistent on letting me know she was there with me. Walking through pike place market I heard the song Brave.. but I wasn’t quite sure where it was coming from. But then the crowd opened up.. A man likely in his 40’s was just sitting on a stool laughing watching a video on his phone with a song blasting out of it. Brave. A song that will forever carry so much meaning and symbolozime for me and my girl.
I was so nervous for that evening.. for the speech that we flew there for. Because it wasn’t for Unravel, It was for Dr. Olsen. He was entrusting me to share out story and motivate people to donate right then and there. I was honored. I was terrified.
but you were just proud of me. thank you sissy miss.
We got ready and headed out. I was still more nervous that I had been but steady. Jennifer has that ability to calm me, at age 6… forever 6… she grounds me and holds me up. I am constantly in awe of my brown eyed girl.
The event was amazing. And I am really proud of how I did. We were able to help raise a little over 600k in one night to support Dr. Olsen and his truly dedicated team of scientists. (ps if you want to meet one come to our MNO at the end of this month in May in San Jose we will have one of them with us!)
The next morning we moved up our flight so I could get home in time to jump in the car with the kids and Tony to make it to our bereavement camp weekend. So Renee and I didn’t sit together. But that was ok.. because again I wasn’t alone. High up in the clouds I met a little somebody.
A baby.. a tiny baby with hiccups commanded my attention. My baby. Our baby. It finally and truly hit me. We are having another baby .. I will be a mom to 5 children. We are all tied up now. .. but our dandelion wish will be our tie breaker. And I am completely and utterly in love.
…until there is a cure..