I have some exciting updates to report. First of all, you can now go to the Circle of Life website and see the video that was made of the tour. It's a little hard to see over the computer but don't let that stop you. It's still incredibly moving. In February John, Callie and i went to the ASBMT meeting in Keystone, Colorado to present the 2007 Alaina Enlow Scholar Award to Dr Mari Dallas.
She is at the Fred Hutchinson Cancer Research Center in Seattle. The work she is doing is really exciting. I will now try and explain what it is in a layman's nutshell. She and her colleagues are working with cord blood cells trying to get the T-cells to come back quicker after transplant. The T-cells are what you need to fight infection. Typically they are very slow at maturing after engraftment and the patient is at risk during this time of infections or GVHD. They are not released from the hospital until they are engrafted which is usually around 4 to 6 weeks. Dr Dallas and her team are growing stem cells in the lab so that they will be a bit more mature when transplanted. In Dr Dallas' eloquent terms , the stem cells are uneducated when transplanted into the marrow and have to grow and move into the thymus to get educated and come out as T-cells. Once they are T-cells that act as paratroopers fighting foreign cells and knocking the cancer cells out. In the lab the stem cells are given a jump start and make in to the thymus quicker so engraftment happens at a much quicker rate. Ok , so that was my attempt at explaining. If I lost you a long the way, I'm sure I did, I have a link from the Fred Hutch newsletter that explains it MUCH better.
Last week John and I went to "The Hutch" to visit Dr Dallas and meet her mentors and see the lab. On a beautiful Friday we found our way to the Thomas building, one of the many research buildings that comprise "The Hutch". Thomas is significant in that Dr Donnell Thomas was the first person to believe in and try a bone marrow transplant. For his work he received a Nobel Prize. Two other researchers at FHCRC have also been awarded the Nobel Prize.
We first visited with Dr Colleen Delaney, who is Dr Dallas' mentor. She does the actual clinical work (among other things) and Dr Dallas does a lot of the research (among other things). After that we toured the lab. The lab basically looked like the others we've seen with lots of cubicles, microscopes and freezers but we loved it. We actually got to see some of the stem cells that they were growing. Later we met with Dr Irv Bernstien. Its his lab that is doing the work. He also developed a new drug that is widely used in some leukemias(among other things). In other words, this is one of the best,innovative cancer research centers in the world. OK so after that .......we met with Dr John Hansen. He is all about GVHD. He is also one of the founders of the National Marrow Donor Program. Barely 20 years ago he performed the first unrelated marrow transplant. He had an enormous amount of wisdom to share and still many questions. It's very hard to track GVHD due to the kind of transplant, age of patient and/or donor, past health issues. The list goes on and on and unfortunately right now there has not been significant progress in ameliorating the disease. At the seminars we attended this year and the researchers we have talked to it is clear that more research needs to be done. As you are well aware our focus is on providing research dollars. Every research center we have visited has welcomed us with open arms because we realize how important research is. It's not about which center gets the money. Many researchers are working along the same lines and whoever gets there first is great but everybody wins. The point is, they are all doing very important work that will advance the outcome of transplants. There have been so many changes since Alaina's last transplant 5 years ago that it gives us all hope and yet there are still many patients that don't have the quality of life that every human deserves. I see this on a weekly basis when I volunteer at the hospital.The main reason I do what i do is so i will never forget, never get complacent. I am a courier because it brings me closer to saving lives or at least giving people hope. Giving out grants for research is also very satisfying. It's a way of helping without having to be too involved. It's evident that we like being in the trenches but if you want to help and don't know how.............................please don't hesitate to donate. We promote The Marrow Foundation because the selection committee is very selective and the research that the investigators do will benefit patients needing transplant worldwide.
People ask me all the time about being a courier, mostly how did I get the gig. I won't go into that but they also want to know what's involved. Typically, I pick up marrow at the lab or peripheral stem cells at the blood bank and get on the first flight out to where I'm going. I pick up the product as soon as it is ready often times seeing the donor leave as I am coming in. I don't get hassled at the airport. The TCA don't necessarily know what it is I'm carrying and how to check it but they manage. Basically, it can't be x-rayed and can't leave my sight. After I get to the destination I go directly to the hospital lab or blood bank and drop it off. After that I am on my own and I don't know the outcome of the transplant. It all happens pretty quick. On my last trip, I picked the stem cells up at 1:00 was on the plane by 4:30 arrived at the lab at 7:30 and the cells were transplanted at 9:30 that night. Gee, did you really want to know? Any more questions.
footnote - some of the pictures might include Bone Marrow Bob. To hear his story and see more pics please go to his blog
A lot has been going on since I last updated the page. In September John and I went to New York to celebrate the 25,000 transplant facilitated by the NMDP. The Marrow Foundation sponsored a dinner at Cipriani's where the highlight of the evening was the meeting of a donor and a recipient. In this case the donor was a young woman who had a remarkable story to tell in her own right. The recipient was a 9 yr old girl who made a very eloquent speech. John also spoke of the value of the Scholar program. There was not a dry eye in the house. While we were in the New York we visited Sloan Kettering Memorial Hospital. We met with two research doctors who are also Amy Strelzer Manasevit Scholar recipients. This is the same scholar program that we have with The Marrow Foundation. We were excited to hear about all the fascinating research that they are doing to try and alleviate post transplant complications. It was gratifying to know how important the scholar program is to the doctors and the research they are doing. It is a significant award in the field.
The day after we got back from New York we gathered in Ft Worth for the kick off for the Lone Star Circle of Life Bike Tour. We met the 10 other riders and I got my first chance to drive the pace car at 15 mph. Alaina was the title honoree. Let me try and explain what this event is all about. First of all, it is to raise awareness for blood, organ, and tissue and marrow donation. There is an event at every stop where the riders honor a local person that has given or received a donation. Alaina was honored at every stop. The events were usually at a hospital or the Saturn dealership (a big sponsor of the tour). The riders ride in and meet their honoree then they each speak about why they are riding and who they are riding for. In many cases the honoree spoke also. These are incredibly moving events and I urge you to go to one if you get the chance. I know they have a similar ride in Rhode Island but I don't know about other states. Our tour started in Ft Worth then went to Tyler, Crocket, College Station, Houston, San Antonio, Austin and Waco. The cyclists rode over 450 miles in 7 days! As you can see by the pictures, we had some fog on a few mornings. Yes, there are some hills in East Texas. The weather was good but hot. In the 90's most of the time.
Callie was an honoree in Ft Worth and Austin (and key note speaker) and a day rider from Austin to Waco. I also got on the bike that day as I was tired of seeing them in my rear view mirror. It was a remarkable experience and you can go to the website at: http://circleoflife.sw.org for more pictures and details.
I wasn't home long before I had a courier trip to Munich. I had a tour of the children's hospital, where I was delivering the marrow, while I was there. It's so interesting to see different facilities and hear about all the research that is going on. Even in Germany they are doing research on post transplant complications. In fact, this kind of research is being done all over the world. Proof that GVHD research is indeed of vital importance. Already transplants are being offered to patients, who in the past, would not have considered such a procedure due to lack of quality and quantity of life. In the past few years researchers have come up with better drugs, protocols and procedures to help combat the bad effects of transplants.
We just received news that The Marrow Foundation got a large grant enabling us to award another Alaina Scholar for 2007. This is very exciting news. The more researchers the better and we know from their track record that the scholars chosen are tops in the field. We will be awarding the Scholarship in February at the annual ASBMT meeting in Keystone. Stay tuned
.Hello all, if anyone is still checking. It's been quite a while since I last updated the site and there is quite a bit to tell. John, Callie and I continue to support our worthy causes, The Marrow Foundation, Lymphoma and Leukemia Society, and Cook Children's Medical Center. The Alaina Enlow Scholar, Dr Pavin Reddy, is making great strides in his research. We visited him in Ann Arbor last fall and were very impressed. We had a presentation by Dr James Ferrera, head of the department, and Dr Reddy then got a tour of the lab and the rest of the University of Michigan Comprehensive Cancer Center. The research that is being done there is cutting edge and well respected by their piers. To find out more about it and/or read press releases about Dr Reddy's work go to: www.cancer.med.umich.edu/news/bmtimmunecell05.htm.
While I'm on the subject of The Marrow Foundation I am excited to tell you about our involvement with the National Marrow Donor Program. I have explained in prior updates who the NMDP is. Basically the Marrow Foundation is the fundraising arm of the NMDP. Last September, John rode a leg in the Circle of Life Bike Tour. This is an annual event to raise awareness for transplants, organ and blood. The tour goes about 700 miles around Texas in a week. It is an incredible and moving event. This year they asked us if Alaina would be the title honoree. This is quite an honor and we will get to tell Alaina's story throughout Texas, and promote the Alaina Enlow Scholar Program. John is in training to ride the entire event. Callie is planning on riding the Austin to Waco leg. Definitely check this website out: http://circleoflife.sw.org. Also, I have been working for the NMDP(volunteering). I do donor drives and am a courier. I deliver bone marrow/stem cells to medical centers all over the world. So far I've been to Germany, Mayo Clinic, Houston and I'm going back to Germany(different city) in a few days. The way I figure it is, I am on the registry but my chances of matching someone are slim so this way I can help save lives and get to travel too. There are 6 million people on the registry and 25,000 transplants have been done in the past 20 years.
We participated in the Light the Night Walk for the Leukemia Society again last fall. This was our 4th walk and we got the hospital involved which enabled us to raise over $6000 for the cause. I have already signed up to be a team captain for this year. In other LLS news, my friend Mary Gibbins is training for the Team in Training Walk in San Francisco. She has trained before in honor of Alaina but never made it to the event because of health reasons. This year she assures me she will do it! You can track her progress or donate at: http://www.active.com/donate/tntntx/mgibbins Cook Children's....I am still volunteering and loving every minute. The Alaina Fund has paid for much needed equipment in the clinic and the hospital. Alaina's photography is starting to pick up again. Her "Sunflower" is now part of the biodiesel logo(something I'm sure she would approve of) and she has a bona fide gallery in Tulsa , M A Doran Gallery. As always, the proceeds go to the hospital. Callie quit her job with The Marrow Foundation last fall and is living in Austin. We all like being closer to each other. She is taking up her agent skills again and looking for galleries to show Alaina's work.
Other than that we have done a lot of traveling. John is still working on his book about Alaina's journey. Please feel free to email me and, of course, you can always donate if the spirit moves you by clicking on any of the logos at the bottom of the page.
Thank you for your continued interest and support. There is much work to be done to help the thousands of people that are diagnosed with leukemia each year.
Leslie
