Building awareness, back in my hiking boots, progress on my immunotherapy fundraiser
Last night I was invited to an event at Kite Pharmaceutical headquarters in Santa Monica, the maker of my magic t-cells. I met a lot of people on the management team and am hoping one of them will join me in April on my trek to the Mount Everest Base Camp. They are interested in contributing to the documentary I am producing, including allowing us to film at their production facility in El Segundo where my t-cells were genetically modified for one month. They have a special elevator in El Segundo called the Elevator of Life that transports the CAR-T cells to the ground floor once they are fully produced. Kite also has an ambassador program similar to LLS First Connections where they connect patients who are going to be getting Kite CAR-T with those who have already had it. I will participate in that program.
I have volunteered 2 Wednesday’s at UCLA as a bedside buddy and have found it very rewarding. I feel like I have been able to help not only the patients undergoing CAR-T but also those receiving stem cell transplants and inpatient chemotherapies. I have learned the areas behind the scenes that I didn’t know existed when I was doing my CAR-T there in summer 2018. No one told me there were popsicles in the freezer in the nutrition room - I wish I had known as it might have helped soothe the pain I had from the infection in my lips post CAR-T. It has been wonderful to see staff I hadn’t seen since August 2018, they are all shocked at how much better I am doing than when they last saw me.
I returned to the orthopedic doctor this past Monday, two weeks after I broke my big toe on a hike. They X-rayed it again to see how it was healing and were shocked to discover the fracture is barely visible on the X-ray. The doctor told me usually at the two week point, it looks worse than the initial X-ray because of inflammation but that was not my case. Must be those magic CAR-T cells that are still ricocheting about my body. He told me I don’t need to wear the boot any more, just firm shoes. I ventured out in my hiking boots today and it felt good, just a tiny bit of discomfort.
I am now less than 4 months from my flight to Kathmandu (with a layover in Doha, Qatar). I have raised over $80,000 so far but have a long way to go to get to my goal of $250,000. I am ever optimistic I will accomplish this and look forward to choosing research projects to fund with all of the money I raise. As a reminder, my fundraiser link is at www.bit.ly/2yMzGRM if you haven’t had a chance to make a donation - I so appreciate each and every gift. Feel free to share the link on your social media also.
Santa and the elves are hard at work up here in the Hollywood Hills on all the preparations. Gus arrives home on December 19 and will be here for 3 weeks. He will again work at the Santa Monica seasonal ice rink and was excited to learn that they bought a full sized Zamboni for the rink which he looks forward to driving.
Thanks for reading!
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