Wow, Alaina did it!!!! She would love this! The opening was June 8. Callie was there and reports that it was a huge turn out. The following Saturday the Enlows and the Owens converged on New York. Alaina has 5 pieces up among the 13 artists in the "Subculture City" exhibit now showing at CBs 313 Gallery.Alaina loved punk music and CBGBs. Five years ago, before she was diagnosed we went to New York. She took several photos while there including one of CBGBs (see bottom of page). The pieces in the show are from that summer trip. Alaina was a huge Ramones fan.The first Light the Night walk we participated in Alaina walked for Joey Ramone. For those of you who don't know, The Ramones got their start at CBGBs and put the club on the map. Now it is an institution. Unfortunately, the club and gallery might close as soon as August.It's a legal problem that you can find out more about it by searching CBGBs. I don't know if any celebs were at the opening but MArk Cuban and Mayor Bloomberg RSVPed that they couldn't make it. Pretty amazing considering the fact there was no RSVP on the invitations. Money raised from the sale of her photos in the show goes to The Marrow Foundation. The show runs through June 30. I encourage you to visit the gallery if you are in the area and please tell all your friends if they live there or are visiting to drop by. The gallery is located in the East Village at 313 Bowery.For more information go to: www.cbgb.com/gallery .

Words don't come close to describing how I feel.The last week was full of emotional moments. (The Team in Training ride was June 5 and Alaina's opening was June 8. We couldn't be there because we had just returned from Tahoe.) Alaina is very much among us.

I didn't know if i would keep this website going after Alaina but we have done so much and there is much more to come so please check back on a regular basis.
Leslie

The Team In Training ride was amazing! I can say that because I was only a spectator. It was part of "America's Most Beautiful Bike Ride" in Lake Tahoe.There were 3000 riders, 1900 were with TNT from all over the country. If you are not familiar with TNT, it is a part of The Leukemia and Lymphoma Society.Participants sign up to do either a marathon, Triathlon on Century bike ride and raise money for the LLS.This ride raised 7 million dollars!!! People sign up for various reasons, some are survivors of a blood disease or know someone that has cancer, many just want to challenge themselves and it's a good cause, and many are alumni.Every rider has an honored hero that they ride for.John ,of course , was riding for Alaina and he carried her picture in his back pouch. Once you have the experience of one , you want to do more.There were all different ages and sizes of participants. Yes, it was beautiful! Lake Tahoe is 72 miles around with 2 1000' climbs. For the Century, the riders take a slight detour. Weather was good, a little chilly and some wind. This was John's first century and he did great! I hope he does another one and if it's a flat ride with perfect conditions I might join him.The same weekend John rode I got an e mail from a friend who is doing the Fall ride on the Eastern Coast in honor of Alaina. Keep track of her donations and training progress at : http://www.active.com/donations/fundraise_public.cfm?key=tntncaVRichar

The stories you hear and the camaraderie are worth signing up for the challenge of your choice. The extra benefit is that you get in shape with dedicated trainers. I encourage anyone that has been contemplating doing TNT to go for it.

We did it! Or i should say Alaina did it or Callie did it. Callie is Alaina's agent and has been following up on the CBGB show. Alaina will have 5 -7 pieces in the June show. The opening is June 8th at 6:00 pm and will run through he month. If you are like me, you can't make the opening but we will be there Saturday 11 time TBA. The proceeds will benefit The Marrow Foundation. If you are in New York in June please stop by. CBGBs for those of you who don't know is a punk rock venue that started in the 70s. Many of punks biggest bands got thier start there(i.e. The Ramones, Blondie, Talking Heads). Its located in the East Village on Bleeker St. The gallery is next door 313 Bleeker. Alaina took a prilgrimage there 5 years ago. It wasn't open at that hour of the morn but she got a great photo that will be among the images on display. The others are mostly graffiti taken in New York at the same time. We went to NYC in early June 2000 right before she was diagnosed. I know that she is jumping up and down over this show. My hat's off to Callie for pulling this whole thing together. It is possible that the legendary club and gallery will close in August so we are especially grateful to have this opportunity.

We can not be at the actual opening because John will be riding around Lake Tahoe for Team in Training on June 5. The ride is 100 miles and benefits the Leukemia&Lymphoma Society. I ,of course, will be there to cheer him on. Right after New York, John will fullfil his dream of taking sailing lessons in Annapolis.

The rest of the summer we will be planning a benefit for Cook Children's H/O dept. We are only in the beginning stages but it should be a one night event with Alaina's pictures and featuring the music of Don't Quit Your Day Job Band. Alaina's infectious disease doctor Dr Mark Shelton is the sax player and ring leader. Watch this site for more details.

That's all for now. See you in New York!
Leslie

I haven't updated the page in a while so beware this is going to be a long update with some medical jargon. I will try to put it in layman's terms as much as I am able.

First, the Light the Night Walk was successful. We had a small but dedicated group of walkers. Our team raised over $2400! Thanks to all that donated.

In November John and I traveled to Washington DC to attend the 20,000 Second Chances Gala presented by The Marrow Foundation. It was a beautiful black tie event to celebrate the 20,000 bone marrow transplants facilitated by the National Marrow Donor Program (NMDP) since its inception in 1987. These are for patients that don't have a matched sibling (Callie was a perfect match for Alaina) and their only chance of survival is to find a match through the registry.Fact - each year more than 30,000 people in the US will need a transplant to survive. About 30 percent will have a matched sibling which leaves 70 percent who need to find an unrelated matched donor.The registry will only be able to find matches for about 2000 even though there are 5 million people on the registry. As the facts show there is lots more work to be done. First and foremost, more people need to get on the registry, especially minorities. I've talked about how to be a donor in previous updates .

Side note - We had a great visit with Callie while we were there. She had a lot to do with making sure the gala went off without a hitch and we are very proud of her.

Perhaps you can begin to understand that finding a matched donor(that is matching tissue types) is not an easy task. The 2004 Alaina Enlow Scholar, Dr Mari Malkki, is working on these matching difficulties, specifically in the clinical outcome(GVHD,survival, infectious complications). This is basically gene study.Dr Malkki will continue to type more genes, finish analysis and write manuscripts.*See below for the more scientific synopsis.

Christmas was spent with Callie and my mother in the Galapagos Islands. Hope you had a good holiday too. New Years was in New Orleans with John's mother and sister.

In January John signed up for Team In Training. Many of you have probably heard about this program or participated in an event. It is for the Lymphoma Leukemia Society. John will ride his bike 100 miles around Lake Tahoe in June. Yes, we will need to raise money for this event and John will have a webpage for direct donations, so check back. 75 percent of your donation goes directly to the LLS for patient care and research.

Research is a very good thing. A lot of people are wary of giving to research because it does not guarantee results. Think of it this way, even if some research has to be thrown out , at least you know what won't work. The research that we are interested in is cutting edge. Its new, it deals with adult stem cells(different from embryonic) and it IS making a difference in the treatment of leukemia and other blood disorders. We just returned from the Colorado, we were honored to give out the Second Alaina Enlow Scholar Award to* Dr Pavan Reddy. Let me try and put this in perspective...this is the meeting that is equal to seeing and talking to Dr Jonas Salk or Dr DeBakey.These doctors are working in a new and exciting field. Dr Pavan Reddy is from the University of Michigan, which has a highly aggressive cancer study program. His abstract(which is what we call his study) deals with acute graft versus host disease and graft versus leukemia effect by histone deacetylase inhibitors. Here's the deal... you want graft versus leukemia because that shows the that engrafted cells are fighting the disease but often you get graft versus host. This means that a person is successfully engrafted but later suffers or dies from GVHD. The GVHD causes severe skin and /or gastro reaction. Steroids are typically given to fight off these effects, however steroids play havoc with the immune system and the patient often succumbs to infection.GVHD is our primary concern and there is lots of new research going on studying the different aspects and reactions.Someone else can find a cure for cancer but for John and Callie and me it seems grossly unfair that someone can endure leukemia and the treatment only to develop a life threatening disease. The good news is that with all the research focused on GVHD , it could very well be treatable in the next few years.

And Finally.... Watch this site for the date of Alaina's New York Opening!!!! It looks like CBGB in New York City will show Alaina's works. We don't have a date yet but it will probably be this summer. I hope everyone can come. Alaina would be thrilled, not only to be showing in New York but at a club she revered!

Dr Malkki's progress report:

My work involves studying variations in HLA_A,B,CcDRBI, DQBI allele level matched leukemia patients(AML,ALL,CML,MDS) and their respective donors who have undergone unrelated bone marrow transplant at fred Hutchinson Cancer Research Center. I have studied 55 single nucleotide polymorphisms(SNP) in 25 immune related genes. We are in process of analyzing the data with clinical outcome (GVHD, survival, infectious complications). We have found interesting associations in 6 genes but these results need to be validated in a bigger study population. With this grant funding I have also been able to compare different typing technologies for discovering genetic variation. I just finished beta-testing multiplexed SNP typing system called SNPlex(ABI corporation) which allows scientists to type up to 48 different SNPs at the same time in a single tube. First experiment with control DNA samples was successful. I will continue testing this system for the next months.

We had another successful show! Many people came and bought. We sold about half the prints and raised another $2800 for the hospital's Alaina Enlow Fund. This week the fund sponsored a marrow drive at the hospital. Over 50 people signed up to be on the registry. I encourage everyone to sign up. It's easier than giving blood( not so many restrictions), not as time consuming and it's only a finger stick. All this does is put you into the registry and if you are a match then you actually give the marrow or stem cells. Minorities are desperately needed and it's free. I urge everyone to be on the look out for a drive in your area. There it is free for everyone. You can call your local NMDP(National Marrow Donor Program) office anytime and donate but it is timely and costly.

I don't know when the next show will be but I've got a few ideas so check back.

We are actively persuing donations for the Alaina Enlow Scholars Program with the Marrow Foundation. Not to be confused with the Alaina Enlow Fund at Cook Children's Medical Center. The Scholars program provides grant money for research. This year we are going for a $240k grant(funded over 3 years). If you would like to donate please go to the link at the bottom of the page. FYI the Fund at the hospital provides money for projects or equipment at the hospital. So far we have helped start a food delivery service to patients and families, bought books for the library, a neuro chair, and sponsored the marrow drive.

Other news... Its Light the Night Walk time again. Sign up in your area it's easy and fun. It's a slow walk ,about a mile, strollers welcome. John and I are team captains again for the FT Worth Walk on Sunday October 17. Check out my Light the Night webpage to sign up or donate. I've used that word "donate" alot in this update. You probably think all I want is your money. Yes it's true but it all goes to a worthy cause and it can be for as little or as much as you want. You'll probably never check this page again for fear that I will start emailing you directly and asking for money. Not true. Check the page to see what good things the money is going for.(www.active.com/donate/ltndallas/ltnlenlow)

On a personal note.. Callie has a job.YEAH! She started working for The Marrow Foundation in Washington DC on September 7. It's a great job and opportunity for her and because of her personal experience and skills she is a "perfect match" for the organization.

Thank you for your continued interest and support.

Leslie and John

I'm getting ready for another show of Alaina's photography. This one is in Ft Worth at the Coffee House Gallery 609 S Jennings. The opening reception is Saturday July 24 from 6 -8 pm. The works are all different from the last show. I haven't decided exactly what I will hang but it seems to be growing,25 to 30 prints. As always the proceeds go to Cook Children's Medical Center. We may sponsor a bone marrow registry drive in conjunction with the show. That way it would benefit both organizations that we raise money for, the hospital and the Marrow Foundation(actually the NMDP, which is a sister organization to the Marrow Foundation). Don't get me started on an explanation. The exhibit runs through August 29th.

In other news... Callie graduated in May from Scripps College. We are so proud of her! She did it in four years while dealing with her sister's illness, donating her marrow and stem cells and taking an incomplete one semester and dropping another. Pretty impressive! Now she is home and looking for a job. She has had several interviews and a possible offer might come through next week. John and I have been travelling but are now glad to be home, even the heat's not bothering us (yet).

So that's the story. If you are in the Ft Worth area, I hope you go by and see Alaina's photos. I'm sure I will have an update about the opening.

Leslie

Greetings

I have lots to tell. First of all, Alaina's photography show is a huge success. The opening was January 10. The place was packed with friends of Alaina and lots of family. So far we have raised over $3000 from the show. It will hang till the end of February. We are looking into another venue in Ft Worth and another show in Denton. Dates for both of those shows have not been confirmed yet. I'll let you know.

Last weekend started with John and I going to Cook Children's Medical Center to be a part of a radiothon for the Childrens Miracle Network. We did an interview several weeks ago and they ran it on Thursday. Friday we travelled to Orlando, Florida to attend the Tandem BMT meeting. This is a huge conference of the international and American Blood and Marrow Transplant Societies. We were there to present an $80,000 research grant to Dr Anna Mari Malkki(more on that later).While we were there we attended some seminars on GVHD and AML. To our surprise we could follow much of what was presented and had Alaina's transplant doctor, Dr Eames, there to translate what we could not understand. There were over 1600 doctors, researchers and investigators in attendance. The research being done is cutting edge and changing rapidly. Many advances have been made in th last ten years, since the meeting's inception. Therapies and understandings have grown since Alaina was diagnosed 3 1/2 years ago. Leading the way in large grants for research in post transplant complications is The Marrow Foundation .The Amy Strelzer Manasevit Research Program is a highly prized award. Top investigators from leading cancer institutes apply for these grants. The grants were started in 1998 by a family who lost a young mother, wife, daughter to post transplant complications. Like Alaina , she had a successful transplant and was in remission. We were fortunate to meet Bruce Manasevit and his family. We are honored to join this family in supporting and encouraging these grants.

Dr Malkki was unable to attend the banquet ceremonies but we met her for dinner the previous night. She is on her third year of research at the Fred Hutchinson Cancer Research Center in Seattle. She is investigating the following:

I'm sure you all understand the above.

Callie was able to join us for this important weekend. We all feel that Alaina would be happy to know that we are helping to further the research. Alaina always liked the idea that Doctors could learn from her experiences and we are humbled that her ultimate sacrifice will someday lead to major breakthroughs in transplant and post-transplant care.

Check back for updates on Dr. Malkki's research

Greetings from webmaster central. We are in Gig Harbor, Washington for Thanksgiving visiting John's brother (Tom , the webmaster) and family.

The latest news is that Alaina has a photography show coming up in January. It will be at the Brickhaus Café in Denton and hang for the entire month. The opening party is January 10 and will benefit Cook Children's Medical Center. It will feature only a handful of her many images. To see more of her photography check back soon. Her art page will be up shortly, we promise.

Thanks to everyone that has donated to the Alaina Enlow Fund this past year. So far we have started a GVHD research grant, donated a neuro-chair to the hospital and raised thousands for the hospital through photo and card sales. If you want to donate please click on the link below and please consider registering at your next local blood drive to join the national marrow registry.

In February the grant from The Marrow Foundation will be awarded at the annual meeting in Orlando, Florida.

It's been quite awhile since the last update. I have been waiting for some concrete news and recently we got it. A lot has transpired over the last eight months. Last spring I started enlarging and matting Alaina's photos(no they are not online yet). One thing led to another and she has 2 upcoming shows in Denton and possibly 1 in Dallas. I am frantically trying to get enough photos ready for the shows and selling the prints as well. They are doing so well, that it is hard to keep up. We also took 4 of he floral prints and made greeting cards. We sold out of the first printing and are on the second run. The hospital found a printer to do the first run pro bono so every cent went to the hospital. We were not as fortunate with the second run but all proceeds after cost will go to the hospital as well .Proceeds from the sale of the prints also go to the hospital.

We spent many months wondering how to best support GVHD research, whether to start our own foundation or start a fund under another umbrella foundation. With the help of Dr Gretchen Eames (Alaina's transplant Dr) and Cook Children's we have started a fund with the Marrow Foundation for post doctoral fellows to conduct research on GVHD. This is exactly what we were looking for and ,pardon the pun, its a perfect match. The Alaina Enlow Scholars Program was announced last week at their annual board meeting in Washington DC. I am not going to go into it in any more detail here but I encourage you to look at their website and please write me if you want to learn more.

John and I are team captains for the Light the Night Walk benefiting the Leukemia and Lymphoma Society. The walk is in Ft Worth on the 11th. Callie is participating in the walk in Newport Beach that same weekend. It's fun and easy so if you want to walk in the event in your town go to : www.lightthenight.org.

On the home front... John is only going into work a couple of days a week. He has several projects at home including writing about Alaina. I would not be surprised if it turns into a book. Callie is back at school in California for her senior year .We have been doing some traveling, separately and collectively, which has been really nice.

So as you can tell we are keeping busy. If you want to know more about Alaina's prints or cards, don't hesitate to email me : leslieenlow@hotmail.com

Thank you for your continued support,
Leslie