Tag: childhood cancer research

Research and family

  *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[…]

prison

I always want to figure it out. I always want to know why I am aching so much more than normal. But even now. Just sitting down behind my computer the tears are already flowing.. And I can’t say for sure why. There is a little girl, she looks very much like my Jennifer. Aptly named, her FB page is Katherine the Brave. And her mom has shared videos of her. And never held back from showing a snapshot of the brutal and harsh reality of DIPG. How it slowly chokes the life out of our children. .. How it tightens its grip..so cruelly slow. Leaving them completely aware of whats happening. ***moments after I posted this Katherines mom posted she had joined Jennifer earlier this evening. I hope they can become friends. And I am so damned sorry*** I saw one recently .. just scrolled past.. I didn’t need[…]

Seattle in pictures

  Seattle was great! So many memories made.. and difference to be made. We gave over 130,000 into the hands of some incredible and dedicated researchers. Thank you! I didn’t tell Jonathan until the night before our trip that we were going somewhere and he didn’t know it was on a plane until we got to the airport. Then I told him every single step before we did it. That seemed to be the perfect rhythm for him. We were on seriously the smallest plane I have ever been on. My 5 ft tall self could easily put my bag in the overhead compartment. I am not a good flier so that didn’t help!! The last time Jonathan was on a plane was our Make A Wish trip. On the flight we talked about those memories… Bridgette was perfect! Until we got to the hotel. Then she freaked. Jonathan got[…]