Shortly after my last post, I resumed cycle three of the GVD chemotherapy which has been working very well to control the disease for the past few months. On Friday, I will begin cycle four. I am afraid that this is the only substantive update that I have, as I remain in a holding pattern while the search for a bone marrow donor progresses (we have still not found a match) and I consider participating in a clinical trial, which somewhat hinges on the status of the donor search, since my oncologist feels that the trial would be less risky if I had a well-matched donor as a back-up plan.
Many of you have already held drives, gotten yourselves registered (just a simple cheek swab!), and worked with my family to coordinate future events to register more donors. I sincerely thank you all for your efforts. If you're able to plan a drive in your office, church or synagogue, camp, youth group, or community, please consider working with the Gift of Life, or Be the Match -- contact information and their websites can be found at the end of this post. While we're looking for a match for me, we can also help register matches for other people's Elissas -- communities of color are particularly under-represented and we can all help add all types of people to the national registery.
Please read this 'guest post' from my friend Miriam, who organized a donor drive recently in New York. In an upcoming post, I will be adding some testimonials from friends who have actually been bone marrow donors, who will share their experiences as well. I invite those of you planning drives who have dates scheduled to email me so that we can use the blog to spread the word, and keep my mom and sister in the loop as they continue working hard to get as many new registrants into the system as possible. Please also consider sending in some "best practices" just like Miriam, so that I can post additional resources for others planning events and drives. Thank you all!
"Organizing a Bone Marrow Drive with the Gift of Life Foundation (GOL) was an absolute pleasure. Their personable staff, organization (which I truly appreciate) and simple instructions made everything go smoothly. I decided to organize the drive and thought that holding it at work (the Union for Reform Judaism) would be perfect. Before I contacted GOL, I wanted to make sure all was okay on the work end of things. I contacted our HR department and explained what I would like to do. After I was given the go ahead, I reserved the conference room at work, picked a date and time (working with my friend Cara to make sure the date worked for her as well) and called Gift of Life. I spoke with Shayne Pilpel, GOL's recruitment coordinator and he explained the process while I gave him all of our information (date, time, location, volunteer coordinator- me, how many kits I would like, etc).
I sent them a business logo and the dates/times of the drive and GOL created a flyer for us to use. We promoted it through our office staff and thanks to the power of friends and the internet, many other people were brought into the loop as well. It was suggested to gather a few volunteers (thank you Cara and Natalie for all of your help!) and set up a time to conduct the volunteer training which is a simple 20 minute phone call with a GOL staff person. They send all of the information in a power point and are available during the drive for questions as well.
A week before the drive I received a box from Gift of Life containing everything from hand sanitizer, a large banner for the table, testing kits, consent forms, rubber bands, name tags and even return shipping labels. I set up the drive as instructed with the help of the wonder volunteers and the day went smoothly. We packed up everything as instructed by GOL and put the shipping label back on the box and we were good to go- 20 more people in the bone marrow registry! I would work with GOL again in a heart beat! If anyone is interested in helping to set up additional drives, I am available to help! (email@example.com)"
To organize a drive - contact "Gift of Life" or "Be the Match"
http://www.giftoflife.org - 1-561-982-2900
http://www.marrow.org - firstname.lastname@example.org - 1-800-MARROW2