Yes, it has been a while since anything was posted here. I have not talked to Kathleen in a while myself. Human nature is weird (for the lack of a better word). I used to email and talk to her often when she was sick, yet, now that she’s doing better I have not talked to her in months. Its not that I don’t think about her often but we’re both back living our busy lives, 300 miles apart and well… I should really call her. … OK. Its in my calendar now. Got no excuses. Kathleen, expect a call from your cousin tonight!

But I did not write this post just to inform you about this…

I received great news from Barb Abernethy on December 13th (Yes, I wanted to post this before, I know. Busy life as I mentioned above.). Instead of summarizing it, with her permission, here’s the whole thing:

Email from Barb:

Last night I had the honor of meeting Dr. Kirk Maxey, CEO and Founder of Cayman Chemical. He also started a not-for-profit research arm called Cayman BioMedical Research Institute, or CaBRI Med for short. Kirk had some exciting advances…small, yes, but in the world of SNUC, anything is great!

In a nutshell, our money is going to fund genomic sequencing on the tumor samples they have from the Andrei Makovic. Andrei worked in IT for Dr. Maxey at his chemical company, Cayman Chemical. Andrei was deemed uncurable, but he wanted Dr. Maxey to be able to continue the research they started when Andrei was first diagnosed. He had a first surgery and those tissue samples were not saved, so the 2nd surgery were strictly for research purposes. This is how CaBRI Med was formed, with about 20 employees from Cayman Chemical offering their time and resources to try to save Andrei. After Andrei died, the recession hit and funding sort of dried up…until Ashley’s Purple Star Foundation was formed. We’ve provided the funding for this activity. Genomic sequencing basically allows them to understand the DNA of SNUC, which in turn will help them understand better treatment alternatives.

One thing that the SNUC team at the University of Michigan has found (and it’s not proven yet), is that by changing the timing of the different treatment options (chemo, radiation, surgery), that some patients are living longer. In Ashley’s case, as is the case in other patients, surgery is not always a best first option due to size and location. In those cases, several cycles of chemotherapy, followed by a combination of chemo and radiation is usually given. However, SNUC is a stubborn cancer. Think about an ant infestation and using a typical spray to get rid of them. You may kill off the majority, but the strong survive, reproduce and then your problem becomes even worse. Such is the case with SNUC. After a dose of powerful chemo, there are usually cells that survive, and with the aggressive nature of this cancer, reproduce, and now the tumor is growing instead of shrinking. So in some newer cases, radiation oncologists are opting to start with strong doses of radiation first in an attempt to blast the cancer cells. Radiation is done daily for 7 weeks straight, so there’s really not a lot of time for regrowth. Again, not enough cases to say this is the best way to go, but if it works on just one patient, then that’s good enough for me, and I know Ashley would be pleased with that result.

I’ve been in touch with personally, 11 SNUC patients, or families of patients who have not made it. Most of them are supportive of what we’re doing and have actually contributed to our fund, or to Ashley’s Foundation. Last night Dr. Maxey handed over a check for $5000 from his for profit company, Cayman Chemical. I in turn will donate that to CaBRI Med for continued research on SNUC.

Last night over 60 people showed up at Summit Hickory Pit in support of Ashley Abernethy’s Purple Star Foundation. A portion of each meal will go to Ashley’s Foundation and in addition to Dr. Maxey’s generous donation, I received over $750 in other private donations. With the proceeds from our dinner, we’re pushing $1500 for December. We also raised about $1000 from the sale of Christmas cards. Every little bit helps!

A Pub Crawl in downtown Lee’s Summit is being planned for April 28, 2012 with all proceeds going to Ashley’s Foundation. We hope to raise in excess of $25K. I want you to know that John and Amber and Kathleen and all the other SNUC patients are always part of our motivation when we do these things.

NOTE: Barb will send me the details about the Pub Crawl when they are confirmed and I will post them here.

I’ve exchanged a few emails with Barb and she informed me of two ways how people suffering from SNUC can help research so I decided to make that a sticky post in the hope that people having to deal with this disease can take their fight a step further and help others at the same time.

Merry Christmas and Happy New Year to you all!

Marco