The Chordoma Foundation (CF) hosted a research workshop ahead of the patient/community conference in Boston, details here. It is truly incredible that the CF has rallied so many global chordoma expert researchers and physicians. I believe there were 140 chordoma experts from seven countries and dozens of treatment centers this year. Amazing, truly. If you click on the bullets dating back to 2007, that year being the first year was astounding, and more experts participate every year who are committed to chordoma! There were several physicians and researchers from Beijing again this year, so what do eastern medicine experts know about this tenacious disease that westerners don't? China has 1.3 billion people, so roughly 1,300 cases a year... about a thousand more annually than in the US. There were six experts from China at the 2016 conference too. Coincidently there was a very recent paper published that included Madison's actual data/treatments related to her rare (1 in 20,000,000) variation, and the following was noted in the publication: "Perhaps more exciting is whether this unique subset of chordoma could be targeted through novel molecular therapies". Sadly late but there will be a cure, and there is excitement. Madison knew she was part of that study prompting the paper/article, it just had not been published and socialized until recently.
The 2018 patient/community was incredible, details here. Chatting with others Friday evening (before the Saturday patient conference) I asked a few people what they expected from the conference... for many it was their first. Most wanted to learn more about chordoma, hear about immunotherapy, any new treatment options that are on the horizon, etc. I think my expectations were a tad high because when I was asked in this small group of patients and caregivers, my response was "I expect a cure to be announced"... and let it hang, then added "If not tomorrow, then at the next conference... or the next. I know it's not a matter of 'if', it's a matter of 'when'. I wasn't disappointed when a cure wasn't announced at the conference, but there are more clinical trials than ever and both experts and patients seemed excited: a researcher mentioned that he was energized and energized seeing so many patients committed to these conferences. The CF continues to generate awe-inspiring passion and most importantly progress.
If you have nine hours of idle time I'd invite you to watch the conference, replay link here and there won't be a quiz. A very eloquent physician/chordoma patient gave the closing statements at the 9:11:30 mark. I feel this is a must-watch, as is Debra's presentation at 31 minutes. There was a memorial tribute that was put together by two co-survivors: one lost her teenage daughter and the other lost her husband. Before you go digging through nine plus hours of video, I posted the picture slide of Madison below and offered my favorite quote of one of Madi's favorites to Maureen and Kris who created the tribute. It starts about 20 minutes from the beginning.
The 2018 patient/community was incredible, details here. Chatting with others Friday evening (before the Saturday patient conference) I asked a few people what they expected from the conference... for many it was their first. Most wanted to learn more about chordoma, hear about immunotherapy, any new treatment options that are on the horizon, etc. I think my expectations were a tad high because when I was asked in this small group of patients and caregivers, my response was "I expect a cure to be announced"... and let it hang, then added "If not tomorrow, then at the next conference... or the next. I know it's not a matter of 'if', it's a matter of 'when'. I wasn't disappointed when a cure wasn't announced at the conference, but there are more clinical trials than ever and both experts and patients seemed excited: a researcher mentioned that he was energized and energized seeing so many patients committed to these conferences. The CF continues to generate awe-inspiring passion and most importantly progress.
If you have nine hours of idle time I'd invite you to watch the conference, replay link here and there won't be a quiz. A very eloquent physician/chordoma patient gave the closing statements at the 9:11:30 mark. I feel this is a must-watch, as is Debra's presentation at 31 minutes. There was a memorial tribute that was put together by two co-survivors: one lost her teenage daughter and the other lost her husband. Before you go digging through nine plus hours of video, I posted the picture slide of Madison below and offered my favorite quote of one of Madi's favorites to Maureen and Kris who created the tribute. It starts about 20 minutes from the beginning.
I watched that with immense amounts of pride for Madison. Not only did she go through the wringer, but she emerged the wonderful being that she was... still is within us. Data from her treatments and her actual tumor tissue will help researchers. While I'm bragging about my kid, Madison probably didn't socialize that she did a couple of video clips in early 2016 for the Cancer Support Community (CSC); one for fundraising and another on the CSC orientation DVD for newly diagnosed cancer patients.
Anyway, back to the conference. About 31 minutes in, Debra Jarvis did the Keynote speech. Debra was a Chaplain in an oncology unit, is a published author, a Ted-Talker, and a breast cancer survivor. One of the many things she said that resonated within me was in the form of a similar message that moms and I had heard form from an ex-chaplain at UCLA: when he polled cancer patients close to death, 90% wanted to die quickly, pain free, and in their sleep. Seems reasonable... What was a surprise though when he asked them if they could time-travel back to their diagnosis date and die pain-free, quickly, and in their sleep... would they? Overwhelmingly no. Wait, what? You can avoid the chemo, surgeries, radiation by just time-traveling back and again, nope!
Debra talks about something similar in her presentation which was about finding meaning, spirituality, and death. In it she tap-danced in to a series of seminars with nurses ultimately leading them towards the question "how would you choose to die?" Odds are, it's going to happen. Interestingly but not surprisingly 80% of the nurses chose cancer. When asked why compared to an instantaneous death options in a plane crash, car, drowning, etc., the 80% chose cancer because it affords the opportunities to say goodbye, to say and express I love you, I forgive you, etc. I had asked Madi the time-machine question way back when, she waived that off. We all saw that in how she chose to live and love over the past year.
One of the highlights was the ask-the-experts panel at the 2:52:41 mark of the unedited video. Internationally recognized chordoma experts answering questions the patient community has. Incredible as always, unparalleled passion and commitment to such a rare disease.
Debra talks about something similar in her presentation which was about finding meaning, spirituality, and death. In it she tap-danced in to a series of seminars with nurses ultimately leading them towards the question "how would you choose to die?" Odds are, it's going to happen. Interestingly but not surprisingly 80% of the nurses chose cancer. When asked why compared to an instantaneous death options in a plane crash, car, drowning, etc., the 80% chose cancer because it affords the opportunities to say goodbye, to say and express I love you, I forgive you, etc. I had asked Madi the time-machine question way back when, she waived that off. We all saw that in how she chose to live and love over the past year.
One of the highlights was the ask-the-experts panel at the 2:52:41 mark of the unedited video. Internationally recognized chordoma experts answering questions the patient community has. Incredible as always, unparalleled passion and commitment to such a rare disease.
I gotta tella ya, I felt like I was at a rock concert! I'd see these global experts around the hotel thinking I need to get their autographs. Researchers who discovered brachyury, most of Madi's surgical/treatment team was there, and one of her physicians played the sax with his band Friday evening... a lifesaver by day and musician at night. He and his band are actually quite good!
A few people have asked about Madison's dog, do we see Colleen, how's she doing? Colleen still picks Bailey up Friday evenings and drops her off for the workweek on Sunday nights or Monday mornings. PJ loves to see Bailey Mondays and loves to see her go on Fridays. Pictured below is Mrs. Kravitz sitting on my desk studying her surroundings with extreme intensity, a neighborhood watch of sorts keen to every movement in her domain.
So what's next? Short term, Facebook. Madison has the Chrome browser on her laptop and turns out the password is saved so I can get in to account as her (or is it as she?!) At first, there was a sense of panic. Holy smoke, her profile showed active on Messenger, I had to turn that off so nobody would casually ping her if they were not in the-know. I pondered sending her mom Facebook private messages from her (no wait, from she?), but that would be mean, which is why I'd likely pick on someone else (like Rodger).
Kidding aside, I suspect there is a way to make her FB page a memorial; I'll have to research that. I think people would still be able to post which is obviously fine... may even be cathartic as Madison put it, and as evident about my seemingly rambles here.
All that said, moms and I are acclimating to our new normal and hope/pray everyone else is who loves her. She is a wonderful book... a beautiful love story, just way too short. Angela and I recently talked about being able to make it through watching the latest video (links in a prior post) during all of the baby and kid pictures, but when we see more recent pictures of her having plowed through what she did with such grace and courage. While there is certainly sadness, we feel so much pride too, and actually grateful she left this planet the way 80% of the nurses wanted to that Debra spoke about, versus suddenly being gone.
Had suddenly-gone tragically been the case, sleepwalking trends in the backyard wearing only an open bathrobe backwards calling Madison's name while making bird sounds... that might have continued for years versus just a couple of months.
