Tuesday, 3 December 2013

MedWorm: a sign to continue

I have been working 8 years now on MedWorm. It has been a labour of love, frustration and determination. I always knew it would save lives. I always believed in this project. But evidence of its worth was a long time coming.

Well just this week I received that which I was looking for, and I guess badly needed to hear. Proof that this project can and is making a difference on people's lives. An email landed after a moment of despair and prayer regarding direction as to whether I should indeed be continuing with this project or not. The relief, joy and sadness combined receiving the following emails is hard to put into words, but you can read for yourself and you may understand.  

First message, received Saturday November 30th 2013

Hello, I would like to request access to the MedWorm search function.

My wife has since 2009 battled stage IV cholangiocarcinoma. She is still alive today in large part from the information I was able to find on MedWorm back in 2010 linking her cancer's genetic profile to research which her oncologist leveraged to come up with a treatment plan.

This treatment halted the cancer and she was able to be off chemo for nearly two years. (THANK YOU MEDWORM!)

Specifically, the MedDorm find that help at the time was "Dicoumarol enhances gemcitabine-induced cytotoxicity in high NQO1-expressing cholangiocarcinoma cells" (World J Gastroenterol. 2010 May 21; 16(19): 2362-2370. Published online 2010 May 21. doi: 10.3748/wjg.v16.i19.2362.

We now find ourselves back in the "heat of the battle" as the cancer has started to grow aggressively, and I am looking to find new options and information now nearly three years later. Being able to keyword search MedWorm would be a huge help again!

Please would you grant me access use the search function again and if possible the ability to set up specific RSS feeds based on those searches terms I will be using?

If you have any questions please do not hesitate to contact me. Thank you for the great gift to some many and all that MedWorm is and has been to us personally over the years! It has been a great help!

God Bless and Thank you,

[name removed]

My reply

Dear [name removed],

Thank-you so much for getting in touch. I am both delighted to learn that MedWorm helped you to find the treatment your wife needed, and also deeply sorry to hear about the cancer returning.

Currently I am facing a real problem to keep MedWorm going as I have completely run out of money to pay the server fees (actually due tomorrow - the fact that your email arrives right now, just after prayer asking for direction, brought me to tears as I believe it is a sure sign for me to persevere to find a way forward).

So I decided to bring the search functionality back as a subscription service, as much as I really want to keep it free for all, it appears to be the only way to keep going at least for the moment. I am therefore launching this weekend a trial version of search by subscription, aiming to start with just 10 people accessing the search, and for that I am asking for sponsorship donations of $100 each per sponsor which would entitle the sponsor to 1000 searches on MedWorm. Details here: http://youtu.be/oGj_zNIGIqI

I wonder if you could afford to contribute as a sponsor and be one of these 10 that gets access to search initially? If not I would still give you access as I certainly do not want to deprive your wife of the information she needs. But if you could contribute that would be a huge help so I must ask.

So far I have just 2 sponsors but will be launching a push across the MedWorm feeds for more sponsors this evening. I hope this is not too insensitive for me to suggest you contribute as a sponsor at this difficult time. I actually hate myself for suggesting it and if you do not want to or are not able to of course I will provide you free access.

Also I was wondering if I may publish your email online (with name and contact details removed of course)? I know it would help me find the support I need to continue.

Best wishes,
Jamila Hanan


His reply

Hello Jamila,

Thank you so very, very much for your kind reply.  Please do not feel bad in your request for a sponsorship donation.   At this time, I can and will be happy to do so. [my wife] and I watched your video and totally appreciate your need and are grateful what you are trying to do here.

Please let me know how we can make the sponsorship donation and contribution?

I will also be happy to provide you any kind of feedback or input from my experiences with the tool that you would like, and I would welcome help in improving the effectiveness of the searches so any insight you can shed on that front would be most welcome too.

Yes, you may use these e-mails as you wish.

I just cannot emphasize enough how valuable MedWorm has been to us.  In 2009, the statistics for stage IV cholangiocarcinoma were abysmal (and frankly they still are.) In 2009, [my wife] initially and arguably had a 6-9 month prognosis, with statistics at the time showing only 10% surviving a year, and worse than that and while some do survive 5 years, statistically speaking the number was so small that it was reported at 0% surviving 5 years: we will be at 5 years here "officially" in March 2014. Our two youngest at the time of diagnosis were only very young, 2 1/2 years old and a one year old, and I was so devastated that they would never know their Mom. Now [son's name] is 8 and [son's name] is almost 6, and I am so grateful that they both have had their mother this long, and I  pray that we can go at least another 5 years.

God Bless you for all your hard work on MedWorm!  We are grateful to you for it.

Sincerely,
[name removed] and Family
My reply

Dear [name removed],

Your reply actually sent me into floods of tears. I guess it was relief after having been working and struggling with MedWorm for 8 years that I had just received proof it has indeed been making a difference as I always knew it would.

Mixed in with delight that [your wife] got to know your children, and sadness that the thing has returned. How I hate cancer and wish society had given it the boot long ago! I am more determined than ever now to help give it the kick it deserves. Thank-you so much for the motivation!

I shall email you a PayPal invoice so you can contribute online - but if that doesn't work for you let me know and I shall find another way.

Good news is you are now my 6th sponsor and I have a few more that may be confirmed today so this really is encouragement and will help me get MedWorm get to where it should be.

The aim is to get all medical sources in the world into MedWorm, some way to go yet but by the grace of God it will get there and you and your wife have just provided a big stepping stone for me to continue.

I shall email you a logon later today so that you can begin search without delay.

Love and prayers,

Jamila

You can read more about my MedWorm project and search for sponsors here.

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