Xan Harwood-Karlik Purples Strides: Yes We Xan
It is with a heavy heart that we update the YES WE XAN team page today. To all who have donated to the 2017 YE WE XAN team, thank you. To all who have been touched by Xan, we hope you will make a contribution, regardless of size, to demonstrate your support for Xan, Sara and their son as they commence Round 3.
Below is Sara's post from the lifeline page that they have asked to share with you.
With deep gratitude,
August 31, 2017
It is with reluctance that I write this today. I feel like once I write it here, everyone will know, and it becomes real again. On Monday, Xan had his routine 8 week CT Scan. I worked in the morning and then met Xan at OHSU to meet with his doctor and get the scan results. All scans had been clear for 9 months, so this shouldn't be any different, right? Wrong. Here is the medical jargon: development of widespread lymphadenopathy, new liver lesion, and new soft tissue mass within the pancreatic bed, consistent with progressive disease. Our hearts sank, the rug was pulled out from under us for the third time, and we had to get back on this roller coaster that we had all hoped was stopped for good. We had the conversation with the oncologist that we have had so many times, What's next? What do we do? When can we do it? What can we expect? However, no where along the way has Xan asked Why me? He is a fighter, that much has been proven. This is not the most dire place that we have been. March of 2016 was much worse, but it still felt like a really big setback. Xan and I had really been enjoying our time as new parents, enjoying the summer, and really starting to feel normal. We no longer made plans based around how many days out from chemo something was, or scheduled vacations around chemo treatments and scans.
Wednesday, Xan had a PET scan to confirm the spots were disease, since they weren't able to do a needle biopsy, and today Xan got signed up for chemotherapy. We were hoping to start next week, but OHSU is full and he is on the schedule for next Tuesday the 12th. It will be the tough 55 hour chemo that he has now done 18 or 19 rounds of, so at least he knows what he is getting into.
I feel like I need to do something. It's the most helpless feeling in the world when you can't do anything. So what can I do? I am trying to rally as much support as possible for Xan and the Pancreatic Cancer Action Network. They do some amazing things like match patients up with clinical trials, provide support for loved ones and care givers, pay for personalized tumor analysis for patients to help them know which treatments will work best for their individual tumor, and finally they help improve patient survival outcomes. In just 3 years, the 5 year survival has changed from 5% to 9%. That seems small, but think about it. That is 4 more people that get to live at least 5 more years! That is amazing. We need to help them continue to further the fight so that we can get Xan a CURE and not just a treatment.
Our Team is called Yes We Xan, and we have set some lofty goals for ourselves! We want AT LEAST 50 participants to walk with us (a 5k), and we want to raise $50,000!!
Here is the link to Join our team: http://support.pancan.org/site/TR/PurpleStride/Pur...
The date is September 23r, 2017 in Portland, Oregon. We have about 13 people registered so far. If you aren't local or can't make it, please make a donation to our team! And if you aren't convinced yet, Kevin Brady, our little mascot, will be there passing out smiles :)
Xan and I appreciate everything you have done for us, and we are thankful for all of your love and support.
Lucy's Post from July 2017
Dear Family and Friends,
As many of you know, my beautiful son Xan was diagnosed with Stage 3 advanced pancreatic cancer in November 2014. In late 2015 Xan learned his disease had progressed to Stage 4 invading his liver. Throughout this journey, the Pancreatic Cancer Action Network ("PanCan") has been an invaluable resource to us. PanCan raises funds for its services primarily through the Purple Strides walks around the country. PanCan's mission is to double the survival rate of pancreatic cancer patients by 2020. Currently, the 5 year survival rate is 8%. The 10 year survival rate is 1%. Only through research and clinical trials can that survival rate increase.
Of PanCan's many patient support services, the one Xan has most benefitted from is the "Know Your Tumor" program, which takes your tissue samples and runs a genetic sequencing project that identifies which available treatments would be best for your tumor, and which clinical trials you might be eligible for. PanCan also maintains the most complete database of available clinical trials in the country. Xan participated in 2 immunotherapy clinical trials, the first in 2014 at right after he was diagnosed and the second in 2015 after the disease had spread. In March 2016, when Xan learned that the disease had spread aggressively in his liver to a point where he had months to live if the next treatment option worked, the "Know Your Tumor" program gave Xan the information he needed to make some quick decisions about his next course of treatment. Xan chose to proceed with a rigorous treatment regimen, which has been remarkably successful, so much so that Xan has been able to take a chemo holiday. Xan has a shot at survival because of the services he has accessed through PanCan.
We know all too well that pancreatic cancer patients need to hopscotch from treatment to treatment to stay alive long enough for a better treatment to come along. This past year Xan and I have both lost friends to pancreatic cancer ~ all were vibrant, determined, hopeful people struck down in their prime, leaving devastated families and loved ones. These losses remind us each and every day how lucky Xan and we are right now. Something miraculous is working in Xan's body right now; our job is to raise funds so that researchers can figure out what that 'something' is and how to keep it working so the number of survivors walking in Purple Strides walks increases each year. Please help us raise the money to fund the research necessary to develop these treatments by supporting the "Yes We Xan" team. Last year, through your generosity, we raised over $50,000 for the "Yes We Xan team. My personal fundraising goal this year is $20,000 and our team goal is $50,000. Please help give the gift of hope and survivorship to my son and his fellow pancreatic cancer survivors. And, if you find yourself in Portland, OR on September 23, 2017, we would be honored to have you walk with us. With deep gratitude, Lucy