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

The days ahead of you will be hard but don’t despair and kick the freakin’ snot out of SNUC like Kathleen did.

I’m a pragmatic guy so I’ll jump right to the point: With no (well, very little) extra effort, you can not only fight SNUC for you, but you can help others fight it. You can help research. You can help find a cure.

The team at CaBRI Med is working hard to find a cure for SNUC. If you will be undergoing surgery during your fight against SNUC, then you can help them by asking the surgeon to save SNUC tumor samples for them to use in their research. Here’s what they mention on their website:

Urgently Needed: Additional fresh frozen SNUC tumor biopsy samples

In order to draw meaningful conclusions, we need to sequence SNUC tumor samples from as many different patients as possible. It does not matter whether the cancer has been treated, but it is very helpful to have the tissue frozen immediately on collection. Anyone who is a recently diagnosed SNUC patient or a friend or relative of one, please contact us at admin@cabrimed.org

Being asked for something like this may be hard to “process” right now if you just learned about your disease, but think of it as an extra kick in the ass for SNUC. It will make no difference to you, but it may make a huge difference for someone else in the future. SNUC is a rare disease and CaBRI need any help they can get. If in doubt, I strongly suggest you get in touch with them to learn more. Do not pass up this opportunity to help please.

If you had SNUC and won your fight, you can still help.

CaBRI Med is also interested in understanding the treatment protocol for survivors. As mentioned by Barb Abernethy here, there has been some research in regards to timing of the different treatment options (chemo, radiation, surgery). The more information (data) they can obtain from survivors, better are the chance they may find a pattern and a preferred treatment schedule for SNUC patients. If you had SNUC, please contact them using the email address above to see if you can help.

Anyone can fight back too!

Just give something to the Ashley Abernethy Purple Star Memorial Fund. All funds are dedicated to the fight against SNUC.

Thanks for your help.

Marco

I am very sorry to inform you all that Greg passed away on March 5th 2011. You can find his Obituary here.

I won’t go into all the details, I will let Kathleen tell you if she finds the time and courage, but the timeline goes like this: In December, a few days before Christmas, Greg’s back hurt such much he had to go to the hospital. They found that his cancer had propagated to his spinal column and some organs (sorry, I don’t remember all the details). Greg started chemotherapy and, the last news in February was that it was looking good and that tumors were shrinking. Around March 3rd, one of Greg’s hand started swelling badly. He went to the hospital and they diagnosed him with a blood clot and started trying to get rid of the clot. In the night of March 5th, the doctors told Kathleen that the treatment was not working and that they had to quickly amputate Greg’s arm. Greg left for the operating room but never returned. He died suddenly when a clot blocked one of his arteries.

As you can imagine, we were all devastated and this new trial is very hard for Kathleen.

I know Kathleen is very busy right now. She just returned to work and she is now working more hours. That is why I took the liberty to let you know about the recent events.

Marco

It has been a crazy and busy summer. I took a trip at the end of July with my parents to Pittsburgh and Dr. Snyderman said “It looks beautiful in there.” So that was very reassuring.

My family planned a trip to Outer Banks North Carolina at the end of August which was a blast. It was a very emotional time for me because I was diagnosed on August 27th 2009, the day before my birthday. We left for NC that night and I got to celebrate my 39th birthday in NC with my family. It was the best birthday ever!!!

I just had another MRI and PET scan done on Tuesday and got my results back yesterday. My oncologist gave me a copy of my reports and everything is clean. There is no change from my last MRI which was in June and my PET scan came out normal. So needless to say, yesterday was another emotional day.

I thank you for your continuous prayer because it certainly is working.

God bless.

I had another MRI done yesterday for my double vision and the good news is there is no change. I am meeting with my neuro ophthalmologist next week to see what the next step is. Right now I have glasses with a prism on the right lens which helps tremendously. I only get the double vision when I am tired, so I can deal with that.

Greg has 3 more days of radiation left. Next week is the “extra strength” radiation. Then he will have another CT scan. Everything is going well. He is doing really good, a bit tired and a little nauseous every now and again, but otherwise, he is still going to work and doing his everyday thing.

I am doing really well. I am looking forward to the Relay for Life tomorrow. Thank you for your donations and support.

Love, Katheen

As you may know, I am doing the Relay for Life this weekend (June 5th & 6th) for the American Cancer Society.

With your permission, I would like to have a Luminaria bag lit for Saskia and Ashley.  Please let me know if you are comfortable with this.

I hope all is well.

Kathleen

To get to Kathleen’s team directly, use this URL instead:

http://main.acsevents.org/site/TR/RelayForLife/RFLFY10EA?team_id=650881&pg=team&fr_id=20782

Marco

Greg had surgery on the 23rd and everything went well. He is back to work today on “light duty”.  So he is happy about that.

His CT scan showed that the cancer spread to his lymph node. We went to the doctors yesterday and he will only need radiation, no chemo. Thank God. The doctor said it is highly curable which is great! He will be enduring the radiation for about 4 weeks. He will be able to continue to work as long as he feels up to it.

Thank you for your prayers and support. We will get through this, I truly believe there is a reason for everything.

I had another MRI last Monday because of my double vision. My doctor said that the MRI’s are improving, that the swelling is going down and everything is looking good. I have to go see a neuro-optamologist to see why this is happening.  At least I know it’s not because of a tumor. Thank God!

Now we are facing another challenge in our lives. My husband got diagnosed with testicular cancer. I know it is very curable so I am not too worried. He is going to have a chest x-ray and a CT scan this week. I guess we will see from there what the next steps are, if there are any. 

I will keep you posted. Have a great day!