This weekend, James, the kids and I were blessed beyond measure, thanks to my cousin Sean and his business partner/extended family member, Bryan. One night at dinner, they heard about James and his acceptance into a clinical trial and came up with the idea of having a benefit for him. Then with the help from several others, they managed to put together a fabulous afternoon and as a result, some of the burden will be lifted from us (especially James) during the months to come.
I don’t know how many people were there but we were surrounded by friends (some we haven’t seen in 20+ years), family, extended family, and people we had never met. If I had to guess, I would say at least 250 and one of them made the trek all the way from MN, which was pretty amazing!
This was the 3rd fundraiser we have had and each year it has raised awareness to Appendix Cancer, which really is the most important, and also for the Appendix Cancer Research Foundation. This year brought us two more families afflicted with this crazy disease – all living within minutes of our old home in Illinois.
As we always say, awareness is our top priority, research and helping that research are next in line.
We are eternally grateful to all of you and love you all! Most importantly your prayers and good thoughts are appreciated. Without them, James’ past 6.5 years would likely have been very different.
Please pray for Houston and all of those displaced. MDAnderson is currently closed through at least tomorrow for all outpatient services. As a result thousand are having their treatment postponed. James beginning his trial next week is questionable, which means he will need another scan (as he will fall outside the 28 day window). We are not thrilled about another barium filled scan so close the last one. But our only option would be that or wait 4 months to his normal scan and begin the trial then. So we are praying we are able to keep his currently scheduled appointments.
Hey everyone! We are in full travel/trial mode in the Richter house. Nerves are a bit frantic on occasion, but overall we are all pretty even keel. However, that may change many times over the next couple of weeks.
I loaded up on some cleanser and creams that a fellow cancer patient used who had the horribly red, itchy, painful facial rash. Hers never got that bad and her doctor was always amazed. James will have antibiotics and prescription topical cream in hand prior to his first infusion, but I figured a little facial cleanser, scalp wash and lotion couldn’t hurt. (Stay tuned on whether my intuition is right on)
So, this is what I purchased – Ceravue Hydrating Cleanser, Florasone Cream and Home Health Psoriasis Medicated Scalp and Body Wash. If you have had similar side effects and have any recommendations, send them my way. I think the side effects are the scariest aspect of this, next to the financial/travel.
Also, you may notice a few changes to the home page. I added an Appendix Cancer Info tab at the top of the blog. This is just a layman explanation of Appendix Cancer/PMP because the numero uno question I am asked is “Why can’t they just remove the appendix?” Easy answer, the mucin tumor usually explodes and spreads (for years) before the stupid useless appendix gives you any indication that something is wrong.
I welcome questions, suggestions, advice. This has been our journey for nearly 7 years, so I have a lot of information to share but also each PMP patient is different in their journey, so advice and suggestions are a plus and definitely appreciated.
One last thing, I added an Upcoming Appointments/Prayer Opportunity section to the right sidebar —>. It will show his appointments and special dates, so your prayers for travel, physician wisdom, and treatment success is so appreciated.
Welcome to my new blog! Old stuff can still be found here, but all things Richter will now be found here. Feel free to go to the sidebar —> and sign up to follow our journey as James begins his Clinical Trial. I will also throw some other Richter daily musings in, just for fun.
For those of you that are new to our story, my handsome hubby was diagnosed with Appendix Cancer with Psuedomyxoma Peritonei (PMP) in December of 2010. This is a slow growing tumor that spreads a mucin like substance throughout the abdomen. Since then, he has undergone 3 surgeries, two that included intraperitoneal chemotherapy heated to 107 degrees. Unfortunately, he has had yet another recurrence and surgical intervention is not an option at this time.
Because of the slow growing tumors, the disease does not respond to traditional chemo, so he has not had any systemic chemo during his 6.5 year journey.
Because there are no current treatment options, he will begin a clinical trial at MD Anderson in Houston, Texas on 9/12/2017. This first appointment will consist of a biopsy, labs, ophthalmology appointment, echocardiogram and finally the immunotherapy infusion, if all tests are within normal limits. He will then have to travel to Houston every 14 days for an infusion. Along with the immunotherapy infusion, he will also be taking a chemo pill daily, which does produce some side effects (something he nor our children have had to experience)
While it is an exciting time for us and the research of Appendix Cancer, it is a scary time too. Your continued support and prayers is greatly appreciated.
If you are interested in the trial, visit here
If you are interested in The Appendix Cancer PMP Foundation that provides yearly grants for ACPMP research only, visit here
If you are interested in the research that previous Team James fundraising helped, visit here