How do ever begin to say "Thank you" to those people.
You just can't
there have been alot, and I mean alot, of conversations with our nephrologist over the last few weeks. We have been trying to find a solution to how get an appropriate donor chosen so that I can be transplanted.
Time runneth out.
Kelli needs a kidney quick.
Our doctor has worked relentlessly to find a solution. He has researched options, called transplant centers. No stone was left unturned.
Finally on Friday a decision was reached. And all have agreed.
Medical records have been requested and received. Referrals have been faxed.
We have decided to move on our journey with Cedars-Sinai in Los Angeles.
And here is the reason why .... (clickety click click)
Did you see that last paragraph!
About 40% of the patients who come to Cedars-Sinai for a kidney transplant are highly sensitized. According to Dr. Jordan, between 95 and 97% can be successfully desensitized with IVIG and Rituxan.
Let me reiterate:
between 95 and 97% can be successfully desensitized with IVIG and Rituxan.
So we are really, really hopeful!
And here comes the rub...
It's 800 miles away.
So - last night marked the beginning of what will be a really busy several months for me/ us/the family/ blah blah blah.
It's Fund-raising Time.
And I have to take it seriously.
Each time I have an evaluation appointment, or whatever, it's going to be a production to get me there. Since I can't drive and therefore travel alone, I have to figure out a way to get there each time.
If John and I drive it's 4 full days of driving round trip, plus the amount of time at Cedars.
I cannot fly due to the wheelchair.
In looking at it, Amtrak may be an option, but we have to make sure and work out all the handicap accessible things on-board. And I may be able to handle it alone, if John cannot go with me.
We both grew up in this area, so I am hoping I have enough friends that may be able to help with the ground transportation should I have to go alone since again I cannot drive at this point.
(And honestly, I am praying, real hard, that the first visit coincides with my multi-class High School Reunion - 20 30 years - on June 19th. Cause that would be awesome!)
Anyway, I know all of this can be figured out with some thought, but the scary thing is that our expense level just skyrocketed. To the Moooooon, Alice!
We have been talking about doing an online auction type fund-raiser over the summer.
It all started when I was talking to the gal that does my hair about things (as we all do), and she suggested that everyone in her salon would be willing to donate services like cuts, color, perms, etc if we ever thought about doing some type of thing that would help with fund-raising. She also mentioned that the vendors in our area really like to participate in things like this, so we would probably get a great response from the community, if we just ask!
Than I got in touch with a friend from high school who is really good at things like this and she suggested an online fund-raiser.That way we could have both local vendors and others from all over the country get involved. She had used a specific software for a fund-raiser she organized at her kid's school that had worked real well.
And an idea was born.
Now that LA is in the mix, I'm thinking I need to get off my keister and get moving.
And that, my dear hopefully still awake and comprehending friends, is where I need your help.
Here is how we plan to structure the fund-raiser date to be determined).
The Software Sponsor: I would like to find a business (or businesses) willing to be a sponsor for the auction software we will need to purchase. It will cost $500.00US. I would be happy to offer them all the advertising within the auction communications, and on the blog as I can as a thank you.
I would like to know who would be willing to go out an contact retailers i your area, and see if they would be willing to donate goods or services for the fund-raiser.
Services (like hair salons, tax preparer. etc) would be setup and identified by region, so people in those areas can bid or buy the service and then go into the store/salon/etc and retrieve the gift certificate for that service.
Goods (Gift baskets, etc) donated will be auctioned off to the highest bidder, and then shipped directly to them. (Note: for goods donated, we would like to ask that the person donating the item be willing to include and manage the shipping of the item as part of their donation. If not, we will pay for it out of the proceeds, but would still need them to manage the actual packing/shipping for us.)
Spreading the Word: I would ask who would be interested in helping me organize a "Spread the Word" day. It needs more thought., but my initial idea is to setup a Mr. Linky thing where we first get an initial base of blogger willing to help out the word. Then, on the chosen date, all of those blogger do a post to talk about the need for goods/services donations. then, once we have the auction all organized, prepped and type with a bow, we do another blog explosion to drive traffic to the actual auction.
I am not really schooled in how to drive traffic like that, so if there is someone out there who can help me get it right- that. would. be amazing.
Somehow, all of this needs to be organized in the midst of traveling to California for evaluation appt's, etc. But, I am confident that with some work, and a great WiFi connection, it will all come together.
Can I get an Amen?
This will be the summer we will look back on fondly.
In 2040, I'm thinkin'.
Wow. Now that I have put on this on paper (as it were), I feel so much better freaked out....
On top of all that, we have setup a new Cash Donation site through GiveForward.org which is an amazing organization that works with many medical needs fund-raising individual and groups. this will be open through the end of the summer. It can be found at:
Anyway, if you would be interested in helping to get the word out about that, just click here to join the group!
And, if you would like to help with the auction (either getting out the word, or finding items to auction), please email me at jkbach(at)comcast.net, or leave me a comment below. Thank you!!If anyone has any ideas on anything that might help in all the craziness, please let me know. It would be mucho apprecianado.
If you would like to assist in any of the madness described above, please let me know wither in comments below, or if you prefer to email me at jkbach(at)comcast.net.
You guys are awesome. I do not tell you enough, but you are.
Please let me know if there is anything I can do to answer any questions, or whatever. Please :)