johnkemeny.com

(Nairobi) “This morning first went to a wildlife orphanage, they had 20 baby elephants and the cutest tiniest baby rhino!!! I actually got to touch a black baby rhino! Next we went to the girafffe center where I got kissed by a giraffe (gross–but did you know their saliva has natural sunscreen and antiseptic).”

(Muhuru Bay) “It’s Friday night and I finally have enough time to just sit and write an email with more substance! Everyone has been so busy since arriving in Muhuru, I can’t even imagine that we’ve been here less than a week. But being busy is good, the one slower day I’ve had so far I started to feel homesick. The cure for that was cooking with my new friend Mama Olwen (Mama Eunice-the real mama’s- neice). She showed me how to make mandazi’s, which are made of chipati dough but deep fried in vegetable oil so that they puff up like fried dough. She has a little one year old running around so she was very grateful for my help and recruited me again at dinner when I made Banana stew for everyone! I can’t to wait to make a version for you all at home. This morning after someone got a text about Michael Jackson we had a tribute, playing his music all through breakfast. People in town were sad to hear the news, although Mama Eunice doesn’t know his name.

So far with Eve’s research project we’ve  been nailing down the organizational stuff and working mostly on the WISER compound. First we hired ten research assistants, all are awesome, and have been training and getting ready for the mass surveying to come! Today was a good day of firsts to write about. I went on my first motorbike ride this morning, we call them ‘piki-pikis’. Philip, one of the research assistants was a very good driver and since the dirt roads are so terrible we go slowly. It was SO much fun to ride around and see more of the lakeshore and downtown Muhuru which is called ‘Customs’ because it is on Tanzania road, nearly at the border.

We went to the Young Social Entrepreneur center in customs which is full of amazing teenagers, then to two schools. One was a private school—meaning very poor, and the other was the best in Muhuru. I talked to the girls there while Philip and Vivian tested the surveys. I started talking with just four girls who were so fun. They taught me how to count in dhoLuo and I told them about university in America. They wanted to be a Pilot, Doctor, Nurse, and Teacher and told me they’d visit me someday. Within the hour about thirty students were gathered under the shade. They told poems and taught me songs in Luo, so I had to come up with a poem on the spot in return and tried singing the WISER song—it was funny hah.

Tonight we had a surprise fish dinner from Mama Eunice. We eat fried tilapia (tonight I had a tail) with cabbage, fresh sliced tomatoes, raw onions, and Ugali. It is my favorite dinner after Christmas Eve’s…if nothing else because it is so fun to eat—no utensils allowed, you just pick everything up with a chunk of Ugali!

Could go on forever…this was just one day, but I’m keeping better tabs in my journal. For a general flow of my days, I wake up with sunrise (6:30) because Im in the top bunk right next to the window. After I watch it rise I get breakfast and tea then get dressed and put on sunscreen! Some mornings we also go running, which is fun because kids will call after you or chase you! Then we work until lunch around 1 or 2 and then again until sunset and dinner. Dinner is our time to all be together and usually ends in some singing or game.

The stars are beautiful as expected. One night I thought I was seeing lightning or some weird phenomenon in the sky at the equator—then I realized it was a car and since everything is so dark you can see the headlights bouncing from very far away. There’s something really natural feeling about waking up with sunrise and letting everything get dark at sunset.

Construction is going on all around us. It’s so amazing to be in the middle of it, because girls will come and look around and you can feel such excitement. Watching the fifty or so workers you think nothing will ever get done. But then by the end of the day another wall is up, a door put in, a floor painted. It’s fun to watch.

Tomorrow is Sabbath for most people here. The plan is to go to Mama Eunice’s family’s church in the morning and then try the clapping church afterwards—with big drums and crazy dancing included. Lunch should be chipatis at Customs and then we might bring them to “the caves” a clearing at the tip of a small peninsula where you see the lake, and Tanzania, and lots of big rocks…and also monkeys!”

How did you spend your Summer vacation?

A hero of mine died yesterday, Christine Stashko. Beautiful and smart, Chris was a free spirit, who would pull her car over to the shoulder to better appreciate a favorite song on the radiio. Her only true ambition was to start a family. It was not to be. Over 30 years ago, while still in her 20s, she noticed a numbness in one foot. It turned out to be a particularly aggressive case of MS.

She moved to Ft. Collins, Colorado for the cooler, dryer air, which helped her symptoms, and the spectacular views at the foothills of the Rockies. Whenever I was in Colorado for TPC meetings I would visit her. She always wrangled her scooter to the front of her house to greet us, no mean feat given she couldn’t sit up without help at the time. I’ll never forget her wonderful smile.

She loved Colorado, but was separated by half a Continent from family, and it was a struggle to get the day-to-day care she needed, a struggle shared with her mom,Tony. About 13 months ago she was admitted to a hospice center. Last month she was evicted for “overstaying” her welcome. Spunk! Pneumonia finally took her.

Facing incredible adversity, Chris demonstrated a resilience and a love of life that is rare. Though she had great cause, I never heard her once complain about her condition. A special person like Chris doesn’t come around often – she will be missed.

We learned yesterday afternoon that Stanford Cancer Center has found two donor matches for Nick out of the thirteen potential matches that had been developed by the national registry. Human leukocytes antigen (HLA) typing is used to match patients and donors for transplants. The immune system uses these antigens (markers) to recognize which cells belong in your body and which do not. Stanford was searching for a set of ten markers for the best match. Each of the two donor matches that were discovered, match ten out of ten criterion markers. Further evaluation needs to occur on the two donors by Stanford before a final selection can be made. Moreover, up until the actual transplant event, the national registry will continue to search for other possible donors that might make an even better match.
   
In any event it looks like Nick is going to get his chance at a transplant procedure which is heartening indeed for all of us. Nick and his family are so very grateful to all those people behind the scenes at EMC, as well as the other large companies that joined in, The Asian-American Donor Program, the Be The Match Donor Program, all the media involved, and the Stanford/Kaiser medical teams that have helped bring about this hopeful development. We are equally thankful for all of the outpouring of personal support by individuals all over this land and around the globe for their good wishes, prayers, support, and for all the donor volunteers who have come forward this past month.

Five weeks ago, we received the devastating news that there was 0% chance of finding a donor. Due to all of the overwhelming support and response to our call to action, not one, but TWO 10 out of 10 matching markers have been found and secured. We have not been told who these angels are due to confidentiality reasons, but we are so grateful for them! Both donors will be prepped, as well as Nick, for a transplant, which should take place within 30 days. Nick still has a long road ahead of him, so we ask that you continue to keep him, as well as both donors, in your thoughts and prayers for a successful transplant. We ask you to continue to spread the word for the need for donors, as Stanford will continue to search for even more perfect matches, until the actual transplant day. Also, we never want any family to experience the hopelessness of not being able to find a donor match. The harsh reality is that there are thousands of people just like Nick waiting for a donor match to be found. Time is ticking away and they need your help too. Please continue to spread the word that every person ‘in good health’ should be tested and enlisted into the registry. Time is of the essence! This is Nick’s wish, and ours, that every person should have a fighting chance!

Thank you from the bottom of our hearts and God Bless!

Kindest Regards,
Carole, Nick & Family

Bottomline: Keep Donatiing. Thanks.

Updates here and here.

Here are Myths and Facts about Bone Marrow Donation thanks to Dan Stack.

Updated May 20 8:10 pm

Letter to Mark Fredrickson from Stacy Morales (friend of Nick):

Subject: Information from hospital meeting

Hi Mark,

An update on the information I learned today at the hospital meeting with Carol Gillespie and Carol Wiegand.

*Nick will most likely start chemotherapy (a slightly different version from the first two rounds) tomorrow. His cell count is slightly better and the doctors are wanting to buy him some more time to find a donor. If not put him into remission, slow down the multiplication of cancer cells.

*Stanford should have Nick in the national database by this weekend to start running the search for a match for a bone marrow transplant

*Once a match is found for Nick, it is usually about 30 days minimum until transplant date due to additional testing and analyzing that is required.

*AADP are expediting testing for potential donors. They are the quickest way to get test results into the national database. Anyone who is going through Be A Match that is not a drive specifically for Nick will have their test results in the system in approximately 4-6 weeks from test date. This is why it is important that if someone is not going to a AADP drive or a specific drive for Nick, they order their kit through AADP. www.aadp.org

I think the most important thing that I came away from the meeting was this: Potentially a match could be someone that has heard our push and been tested. If they went the longest route for test results, that’s 6 weeks from now until they are found to be a match. Add on top of that the 30 day minimum for transplant date. We’re looking at 2 1/2 months. God willing Nick has that. The message we need to push is do not wait, get tested NOW….At a drive for Nick (being held in Bay Area, at EMC World in Orlando, and at EMC HQ in Massachusetts) or through an AADP kit.

A side hopeful tidbit I learned is that a match could potentially be found from someone of a different race. Carole Gillespie said it is rare but she spoke of two cases she’s seen where someone of a completely opposite race was a perfect 10 for 10 match. It’s a shot in the dark, but you never know!

Thanks again for all that you are doing!

Stacy

Takeaway (from Dave Farmer):

Please go to http://www.AADP.org to register online and order a free test kit to be mailed to you. Kits ordered through AADP.org (not the ones ordered through marrow.org) are being expedited specifically for Nick. Free kits are available for mixed races or minorities. At the top of the page, click “Register” and select “Request a Test Kit.”

Do it today!

In case you’ve been hiding under a rock these past couple of days, you’ve seen publicity re: Nick Glasgow’s urgent need for a lifesaving bone marrow transplant. The difficulty is that Nick is part Sino-Asian (specifically 1/4 Japanese) and part Caucasian, which makes finding a match difficult. However, testing for a match is a simple cheek swab.

Mark Fredrickson’s blog has all the details.  Phillip A. Harris’s blog has up to date information on the search, including important donor links: www.marrow.org, www.aadp.org, www.asianmarrow.org, and www.aabmf.org.

Twitter has been all-a-twitter’ng about Nick, including my close personal friend (don’t sue me!) Phil Plait (hint to @donttrythis, @grantimahara, @pennjillette, @GStephanopoulos and all celebrities: we need more celeb re-tweets); and thanks to @storageanarchy there has been broad tweetsupport from IBM, SAP, HP, NTAP, HDS, … .

Facebook has at least 2 groups, the main group and one I started, for which I even paid a very modest amount of money to advertise.

Then there is the free publicity this website got when CBS-TV Channel 5 in San Francisco/Oakland/San Jose ran a story (video) on Nick, and showed this website as an example, highlighting johnkemeny.com! The great thing about that is it made my unaware cousin Peter, who lives in SF (and Paris and the World), fall off his chair when he saw it!!

Update: SF Examiner Story, Digg this, and ‘UP’ this.

This post is way out of the ordiinary. Right now (and time is of the essence) you could help save a life. Read on …

Appropriately wearing a Sombrero (Galaxy), Audrey Hepburn would be 80 yesterday, the day before the Cinco de Mayo. Lia and Alan celebrate with her.