The HeliOS Project is now.....

The HeliOS Project is now.....
Same mission, same folks...just a different name

Search the Blog of helios and all comments

Loading

Tuesday, November 18, 2014

Tough Choices and Uncertain Future for Reglue Projects.

I sat in the office of Dr. Peter Scholl yesterday and the decision was made. After an uncomfortable but necessary laryngoscopy ,the rate of growth  of the pre-cancerous tissue in my throat and larynx can no longer be ignored. Depending on how soon we can get the insurance minutia settled, I will undergo surgery to remove my larynx and associated lymph nodes sometime in the second week of January.

This isn't a carefree decision. This surgery is both complex and life-changing. It entails a two to three week stay in the hospital and months of therapy to learn how to speak and eat again. It is an extremely painful recovery.

 On the positive side of the ledger, this will stop any further throat cancer growth and let me get on with my life. I cannot function with the malignant sword of Damocles hanging over my head. I say "my head"...

This decision has a larger impact. Diane isn't taking this well. Even though she knows it's the best thing to do, she still worries. We're working through the problems of caring for her while I am in the hospital. Two back-to-back strokes in 2011 left Diane unable to fully care for herself. Hopefully my youngest daughter can take a few days off to stay at our house. I'm working on a way to get some money together so I can give it to her. She will have to take a week of unpaid leave at work and she lives on a shoestring the way it is.
  
What this means for Reglue.

In the long term, Reglue will continue to operate. I will remain the Executive Director and our mission will not change. However, it may dwell in hiatus for a couple of weeks after my surgery. Pete Salas and James, two extremely important volunteers for Reglue will keep the lights on and will continue to repair and refurbish incoming computers and maintain the building. Unfortunately, some other things will not happen in my absence.

Our ongoing annual Reglue fund raiser is 55% behind our mid-campaign goal.

Even though Indiegogo extended our campaign an additional 15 days, I can't be sure we will reach the amount needed to fully fund us for the next year. That being the case, I am cancelling The Twelve Geeks of Christmas this year as well as our Mentoring Program for Girls.

 Our Prometheus program, the project that helps the most disadvantaged Reglue Kids get online is also being suspended for the coming year. My crystal ball is foggy at this time so I cannot plan on projected figures. We must plan based on what is on hand. Prometheus is the most cost-intensive project we fund.

Ohio Linux Fest was an emotionally overwhelming experience for me. It gave me literal haptic feedback on how many people value what we do at Reglue. For that I am grateful beyond words. We have 11 installations scheduled between now and the last day of December. Others may pop up in that time but, for now, I am comfortable with those numbers.

I want to thank everyone who has helped us during the ongoing campaign. You folks are the life-blood of what we do and I appreciate you more than you know. So, between now and January, we'll march forward, keeping in mind what is really important.

A child's exposure to technology should never be predicated on the ability to afford it


10 comments:

Anonymous said...

Ken, I wish you all the best. I am recovering from a rather severe concussion, a very small issue compared to what you have been through. As I have followed you blog for years now, I feel as if I know you. My prayers are with both you and Diane. I haven't been active in Church for many years, but I hope God will overlook that when I ask for him to help both of you. I feel that he will. I'm only slightly older than you, I know you make your own decisions, and that's as it should be. I agree with your choice to do this. I may not have the right to express my opinion on a matter so personal, but I hope this will allow you to move on with your life, and Diane's too. I wish you all the best, you have made a positive difference for a lot of young people. You will probably never know how many positive contributions that so many of them will make to this world. Take care of yourself Ken, you have made a difference for so many, most likely for more than you realize. I believe you will help many more, right now, this is your time.
Paul Sams

John Allen said...

Sad times indeed, best wishes Ken.

Ken Starks said...

Hey John...from my perspective, not so much sad as a period of Metamorphosis. To the point, this is a time where I cannot act as fund raiser and a cancer surgery patient at the same time. Trying to do both would make each effort that much more difficult.

We will get through this and come out of it more able to help. And a spoiler here if I may. An anonymous source has donated enough to our paypal account to bring The 12 Geeks of Christmas back into play this year. I will make that announcement this coming Monday. Again John, thank you.

Ken Starks said...

Paul, thank you from both Diane and myself. As I mentioned earlier, this is simply a time for change, and in the long run, a change for the better. I'm not worried about the surgery. Doctor Peter Scholl is in the top 10% of ENT surgeons in North America and I am extremely lucky to have him quarter-backing my recovery.

The 12 Geeks of Christmas is now back on btw...that is due to an anonymous but extremely generous donation to our paypal account. This will be fun this year.

jbmoore said...

Um, if these are precancerous lesions you can try an aspirin/resveratrol combinational therapy first:

http://www.ncbi.nlm.nih.gov/pubmed/24516128

I am guessing that this is epithelial tissue that is precancerous, so it may respond to this therapy. You may also want to look at metaformin (http://en.wikipedia.org/wiki/Metformin) and mitoq (http://en.wikipedia.org/wiki/MitoQ).
It would depend upon your doctor's estimate of the rate of growth of the tissue, but if you can wait a month, that should be sufficient time to determine if a combinational therapy of two or more of these drugs would work to reduce/destroy those precancerous tissues. All cancers are due to loss of mitochondrial function. Resvertrol promotes production of new mitochondrial. The aspirin inhibits an inflammation pathway. The combination kills abnormal cells. It may be too late to save your larnyx, but I hope not. Metaformin is another cancer preventative. MitoQ is liekly another. It specifically targets mitochondria and should help repair damaged mitochondria. Anyway, check the references out yourself and make an informed choice.

Good luck,

John

Andrew Cater said...

You're a good bloke Ken - you work extremely hard for those that need you even as you could do with some help and consideration yourself.

Reglue will keep going: we need you to keep going too.

Gavin said...

Well, darn it, that sucks. I know you will be OK about things, one way or another, Ken, but I worry about Reglue in all this.

Just curious, how much would it take to get the Mentoring Program for Girls back on track?

Ken Starks said...

Gavin, thanks. The surgery is just a thing...I'm not concerned about it. It's what I have to do to defeat this son of a bitch once and for all. I'm glad for it actually. Diane...not so much, but as I said...Diane tends to see the sinking of the Titanic with a orange peel circling the kitchen sink drain.

I probably won't have time to do it in the next couple of days but we've received 3000.00 on the paypal side of the fund raiser and both The 12 Geeks of Christmas is back on. I think we'll be fine for the Gurlz-R-GeEKz-2 program. It runs us from 300 - 400 dollars for the 90 day program so I think we should be good on that as well. Thank you though for your help and concern. Like I said...the surgery? Not a big deal. I'll get through that.

Finally. ;-))

James Dixon said...

Keep us updated, Ken. We'll be praying for you.

ebrke said...

I have made a small contribution through PayPal, unfortunately all I can afford at the moment.

You and Diane will be in my thoughts as you prepare for your surgery, which I have no doubt will enable you to continue the great work that you do.