November 14, 2016
Haven't penned an update for quite some time for fundraising. Now that I am at the mid point of treatment I thought that I update to all of my donors and thank you for your support. Without the support of so many family and friends, and frankly many that I haven't met and don't know, but out of their goodness of heart are making this treatment possible. I humbly and from the bottom of my heart say THANK YOU!
My treatment has been going fairly well so far with only one slight set back. Having said that it means no negative surprises and that is a big win going through a major medical issue such as a transplant. Woot!
I've met some really great people here who are also patients fighting the same disease and getting the same treatment. I am seeing first hand how difficult this treatment is on some people, which is why I am very cognizant on how lucky I am tolerating as well as I am. My heart pours out to the ones having difficulty. I don't get the sense from a single person that their is a regret for making this decision for treatment. We are all hell bent on getting rid of MS, regardless of the temporary uncomfortable feelings of treatment.
As you are all aware this treatment is very expensive and is not covered my insurance. Many of the patients getting treatment was able to raise the entire cost of treatment through fundraisers and such. We fell woefully short, but i felt that i was not going to be denied treatment to maintain a quality of life that I so dearly want. I'm sorry to once again ask for some donations to help offset the cost of this treatment. We raised roughly $8000 of the estimated $65,000 needed to cover all expenses. The treatment cost is $50,000, extra costs included, plane fares, hotel, visas, lost wages, etc.
We are not expecting to have others foot the bill for the entire endeavor. Anyone who could help in any way is so greatly appreciated by us. Had some conversations with other patients and to a T they told me that they they outpouring in support had a new appreciation in humanity. It's very touching and emotional for chronically ill patient to hear that.
As a side note. All contributions are made to Help Hope Live which is a 501cs non profit and contributions are tax deductible. If you are looking for a tax deduction this year and would love to help than it is a double win.
February 13, 2016
My journey will be a story in the local newspaper, The Seguin Gazette.
Another interesting week in my journey to halt the MS progression. I was contacted this week to see if I was interested in having the local newspaper write an article about my journey. Of course I am. Yesterday a reporter from the Seguin Gazette stopped by my office.
We had a great conversation with their reporter, Felicia Frazier. She told me that the article will publish shortly before our fundraising BBQ on March 6. We will get together again after I return from Moscow for a follow up story. Her interest in the story is somewhat personal as she has a good friend that has MS. Unfortunately for her friend, she is living in a nursing home. Obviously her MS is more aggressive than mine.
Living in a nursing home or assisted living is part of what I am trying to avoid by having HSCT. Quality of life is what this insidious disease robs people of. Quality of life. Yes, quality of life is what I strive to maintain. Is that asking too much?
This journey is still in the very early stages. But, I can tell you it is already a roller coaster ride. Many ups and downs. I suspect the ups and downs will likely get more intense as time goes on. Better tighten the belt as the ride is going to be very rough. Ugh!
January 27, 2016
Wow, fundraising for a large sum of money sure looks a high hurdle. Raising $65,000 is no picnic, to say the least. Thankfully some really great people are stepping up to the plate and helping out in a big way.
First fundraising event is penciled for February 19th. Not sure on the exact location as of yet. Will have to get back to you all when everything gets firmed up. Down here in Texas we love our BBQ! So why not kick things off with a BBQ plate fundraising event!
You may have guessed that the second fundraising event would be a BBQ plate also! Ha, you are sooo clever!!! Did I ever tell you that we love our BBQ down here? LOL Chef Ernest Servantes has graciously offered to help us with our efforts on March 5th. Will update this on another post when all of the details are confirmed.
We are kicking around the idea of doing a casino night in April, if time permits. Will keep everyone posted with any more information on this idea. Who knows, it may never come into fruition. But if it does it could be a fun and exciting night.
January 16, 2016
I always enjoy an inspiring story. Against all perceived odds the underdog wins. My Facebook friend, Kristy Cruise, has one such story. It was filmed by 60 minutes Australia and aired almost two years ago. Please watch this short video about courage, perseverance, and fight. It’s a very uplifting story; you may want to have a Kleenex nearby. She is a real trailblazer and warrior.
My journey for battling MS will begin in late April. Like Kristy, I will be travelling to Moscow and be treated by the same medical team.
January 14, 2016
Click to see Ken with Celebrity Chef Ernest Servantes https://helphopelive.org/campaign/album/9726/gallery?return=/campaign/10143
January 12, 2016
Alicia & I had a great meeting with celebrity chef Ernest Servantes this afternoon. Ernest has agreed to assist us with a BBQ fundraiser for my upcoming transplant. He has a lot of experience in fundraisers for various just causes. It's truly God's work that he and his fellow cooks do for people in need. How great is that???
We are looking at a possible date in early March and as we get things figured out we will post the information. In the meantime we are looking for people willing to help out in many different facets. If anyone is willing to help please reach out to Alicia or myself. This will take a great deal of work and we are in need of serious assistance. We will be looking for corporate sponsors, food donations, as well as anyone willing to help in any way needed. We may even do a bake sale for any bakers willing to help with something like that.
Thanks everyone.
BTW, I ate another slice of humble pie today. The extent that people like Ernest go to help others is extremely humbling.
January 9, 2016
Grateful.......and another slice of humble pie
I woke up this morning at 4:00 am. Immediately thought of a text message that I received from my friend Bill Squires. Grateful is the best way to describe how I feel when people will put themselves out to help another. Bill texted that he would like to have a BBQ fundraiser to help me with my transplant expenses. I am very humbled and grateful by his generous offer. A slice of humble pie for me. As I lay there I am overwhelmed with emotion, my chest swells, tears flow.
It takes me back a few years. The same level of emotion, the same thoughts of gratitude, eating humble pie. Many of you may remember the terrible car wreck that I was party to in 2009. There was many prayers circles organized around the country. People of whom I did not know sent me cards and prayed for me. Trust me, I could feel their faith and love. My friend Phil Ruge-Jones' teaching of Theology inspired me in this difficult time. I was still healing my 14 broken bones, collapsed lung, comatose state. RJ talked about God as energy and that really resonated with me. I wrote a paper on optimism because these two things intertwined in my mind. Prayer circles and the love that I felt gave me optimism and energy. God fueled my optimism and healing, all helped out by people. People like Bill. People like you. Again I am overwhelmed with emotion as I type. Again I am grateful. Again I eat another slice of humble pie.
Alicia and I have another friend who has offered to help us with BBQ fundraiser also. He told Alicia that he is honored to help us. It is I who is honored. Honored to know people like this. Honored to have them as friends. Most of all, very grateful. Another slice of humble pie please. And a larger belt as my waistline is ever expanding!
