Mainly we are in the process of getting our new website up and running. We are far behind, but only because we have changed the design, and we have real jobs as well, so getting the time to do it, and do it well, is hard. But, we are now close, and we have lots of great content for everyone including:

1. Patient resource page with lots of links to studies, a comprehensive donor center directory with links to stats for the centers success rates etc.

2. Easy to understand process to join the registry, medical guidelines, where to register, what your responsibilities are as a donor.

3. Events page: learn about all RTR upcoming events.

4. Information on Team RTR and RTR Cares, and how to get involved.

And much more…so stay tuned.

Also we have dedicated slots to the Philadelphia Triathlon, Broad Street Run in Philadelphia, and Rock ‘n’ Roll Phila Half Marathon. If you want guaranteed entry, and want to raise money for a good cause, let us know at racingtoregister@gmail.com. Also get lots of goodies and free coaching.

On Friday we did an interview on the Michael Barkann Radio show here in Philadelphia on CBS Radio, 94.1 WIP. See below link for a clip:

Our next drive will hopefully be at the Lemon Run. We have asked for a table (11/3) and even if we are not there, we encourage  you to go to the one in Philadelphia or check out there site www.alexslemonadestand.org for more info on other cities. This is an incredible organization that does amazing work. Sad that a young girl had to fall to this disease, he whose name we shall not mention, but they turned a negative into a huge positive. It’s a great time, we did it last year and hope to again this year.

We will also be at the Philadelphia Marathon on the weekend of 1/17-11/18 at the Philadelphia Convention Center with Ronald McDonald House. 

Things are moving along and we are excited to offer the RTR Team program. This is a program where anyone can do any race and have their own fundraising website we get for you, and you can race and raise money for a good cause. If you select the Philadelphia Triathlon, Brod Street Run, Philadelphia Marathon we can provide you with exclusive coaching services through our partner Mid Atlantic Multi Sport. 

Of course we could always use some funding help so if you know of a company or group that believes in our cause, let us know. We are seeking charity sponsors for the 2012 RTR Charity Golf Classic. Sponsorships of all levels are available. 

Last for now, good luck to all the athletes going to Ford Ironman World Championships, its hard to believe it was a year ago this week we left. If you are going, enjoy the expericen, be good to the island! Kona is everything you think it would be, incredible energy and amazing people, not to mention an electric course.  Take your time, have fun, enjoy the scene, for that week, you are a star! Good luck everyone!!

“As a professional athlete I recognize that winning any race or competition takes focus, determination, and passion. My impression of Racing To Register is that this organization has all of these essential characteristics required to win the race against blood cancers. The ongoing work Tom and his team do to educate and inspire people of all races and ethnicities about the importance of joining the Be The Match Registry is invaluable.  It is my sincere hope that you will join me in supporting Racing To Register, now and in the future. “

Rod Carew

Baseball Hall of Fame 

Congrats to friends of RTR Bob Pugh who had a great race at the US Nationals, in Vermont. Bob finished 8th in his age group and continues to be a threat at the Olympic distance in the US and abroad. Also to Mike Abenne. Mike finished 3^rd in his age group in the Ironman Wales last weekend, missing qualifying for Kona by one slot…but don’t feel bad for Mike, he qualified for the 2011 Ford Ironman in Kona and will be racing there in just three weeks. Traveling around, and racing fast! Mike also ran a 3:20 marathon in Wales…need I say more? 

As an update to our “webmaster” Glenn in Canada, and is recovering from a marrow transplant as we speak, he is back in the hospital fighting the graft vs. host disease. GVH is common, and nasty. It can cause lots of issues, most of which I will spare you the details of. Glenn is now in hospital recovering and fighting them, but his spirits are high and he is showing us that he indeed is a true “Ironman”,

Here is the most recent update I got just yesterday: 

I am still in the Hospital and will be for another 2 weeks as they try to control the graft vs host disease.  They are trying a couple of other drugs to control the (symptoms) .  We wait, we try to be patient, and we put our trust in God, that this is something He has the ultimate control of.  The doctors and nurses and level of care here is excellent.

It is not easy to keep my spirits up daily, and this is where I need your support and Prayers.

 Glenn is an amazing guy and will not quit. I’d expect nothing less. Hang in there Glenn!

 Tomorrow is the first RTR Charity Golf Event, and we are expecting great weather and a good crowd. Check back here for photos in the next week or so. 

Last, if you have an interest in joining RTR Team, please go to www.firstgiving.com/racingtoregister . You can choose any race on the site or let us know of one, create your own fundraising page, and help us continue to raise awareness on joining g the National Marrow Registry.

Of course the main focus of Racing To Register is to continue to educate and promote the need for people to join the Be The Match Registry.

To that end, if you are going to be at the Philadelphia Eagles home opening game, 9/25/11 please come by and see us. We are going to be the charity honored by the team as part of the Teva Red zone Community Heroes and we will have a booth location to follow….

8/17/11

Hi everyone,

It has been a few days since the last update. We wanted to keep you up to date with the progress. Glenn normally writes but this  time I am doing it.

The kids and I visited him today and we did all the talking as Glenn just sat and nodded. Glenn’s last few days have not been very pleasant and have been pretty crappy (the word I will use J ). His mouth is so swollen inside and out. His tongue is triple in size and his mouth is full of sores. They have him on morphine and steroids to help with the pain and the swelling. Unfortunately, we knew the mouth sores were a side effect of the chemo but perhaps we were hoping he would skip this side effect. His nurse says he is a trooper and is obeying the staff as with regards of what to do. A simple task of eating a popsicle is taking him half an hour to eat a ¼ of it or a few bites of applesauce. He gargles with a couple of different medicines and hopes this will help. The nurse said the sores may last a week. We are on day 4of the mouth sores. He compares it to a football being shoved down your throat with all razors on it. The nurse said way worse then strep throat..so if you have had it then you can imagine perhaps..

Today, he also surprised us by taking a chunk of hair out of his head…so now he will soon sport a new hair style.

Thank you for all your prayers and emails. I do forward them to Glenn so he is reading them although he may not respond to them.

He is quite tired too still so that too is par for the course.

But..we know that even as Glenn is going through this dark time, the Lord is holding his hand..or I like to think as read in the Footprints Poem, the Lord is carrying him in His healing arms.

Thanks you and we will continue to keep you posted.

Michelle

8/12/11: Day 4 is almost over and everything is going as planned,  the doctors must have done this before as they have called every side effect and when they happen to a tee.  Currently I am dealing with nausea and mouth sores.  Both are manageable and I am eating ok despite the side effects.  I am told that these side effects will get worse for the next few days then things will start to get better.  The stem cells will start to graft around day 10 with grafting results showing up at day 18. 

My brother Wayne started a really cool facebook page  called “the 28 day Glenn Challenge” check it out and sign up.

Thanks to all those who have emailed me well wishes in the past 10 days,  I may not always answer them, but I really appreciate them, they help to shorten some long isolation days.  Special hi to all my friends at Parker Hannifin!

Glenn

—–Hi everyone,

This update is from me, Michelle,…so yes..it may be longer then Glenn`s. J

I just got back home from checking him into PMH..that is Princess Margaret Hotel….I mean hospital. J He has a wonderful room with a great view, which he is VERY THANKFUL for. Hopefully this view will help him with feeling a little less isolated. He is right near the nurses’ station so I am sure he will enjoy seeing and hearing their conversations. He has his own private room with a bathroom and a bidet in there…see I did say Princess Margaret Hotel.

Upon arriving , we checked in and met with the nurse who asked questions and Glenn can also say he has now experienced a new version of `get swabbed“, which he is thankful we do not have to do that to others…. We met with the transplant doctor and the pharmacist who went over the numerous drugs and anti drugs will be taking. Wow…talk about lots of drugs and money for these drugs!

We were wrong with some of our dates and what happens over the next few days. Starting tomorrow, he will be having 4 days of chemo. One kind in the morning and another stronger kind in the afternoon. The second dose takes 3 hours to go intravenously through his Hickman line. Then he is done chemo around 4 :30 and can actually leave the hospital and go for a walk or come home and be back by 11. But Glenn will be staying after the chemo and he  may go for walks. Then on Monday he has radiation which he will have 2 rounds of throughout the day . Then on the 9^th(Tuesday), he will have the transplant. So as the pharmacist said `pretty uneventful prior to transplant. He may be nauseous and vomiting but they are pretty good with the anti nauseate drugs. We learned lots of things that could or might happen after transplant but will take it one day at a time to see if Glenn experiences any of it.

So…the time is finally here. Lots of emotions have played through this past week. Yes..I should be excited…and am somewhat.. But to be honest….there is fear, and I know that is a human response. But along with the fear there is peace and joy.! Joy of feeling the love from all our family and friends. We have spent the last few days with family and friends, laughing , crying and praying! What a wonderful feeling and experience. We had our Pastor over on Monday with Ryan and Collette. Sierra has been in the States with our church group doing  mission work  this past week and comes  home on Friday night.. We talked with Pastor Jana about our joys, concerns, fears and thoughts. We also said how proud we are of Glenn because he is so strong and he is the rock in our family right now. We also know that the Lord is our rock and we would not be able to go through this without Him. Pastor Jana read to us Psalm 121( will share a verse and you can read the rest yourself) vs.1-: I lift up my eyes to the hills, where does my help come from? My help comes from the Lord, the maker of heaven and earth..vs7. the Lord will keep you from all harm, he will watch over your life, the Lord will watch over your coming and going both now and forevermore “ So, yes, there is a little fear..but there is more peace knowing that the Lord is watching over us and watching over the doctors and nurses.

Please continue to also pray for the donor! What a gift this person is giving and is probably now also going through some medical appointments.

Thank you again for all your prayers, emails , cards and thoughts. We do covet them. We hope to look back in five years and rejoice in the healing of Glenn and praise the Healer as we go.

Continue to pray for us as this journey is long,

I am sure that Glenn’s updates from now on will be much shorter than mine J

Tom didn’t race due to his continuing recovery from surgery, but plenty of Racing To Register athletes did.

Bob Pugh, 3rd in age group, top 50 finish overall, Matt Noone-2nd in Olympic Aquabike overall, Josh Sloan-3rd in overall Sprint Aquabike. Many other team members had personal best times on a fast course.

Probably more critically, we registered over 100 people for the National Donor Registry, and collected some much needed donations. Thanks Phila Insurance!! and the Philly Tri for the help on the booth, for the second year we have had tremendous success at this event in creating awareness and educating people on the fact that we must increase the donor base.

We will do a more formal announce soon, but we are very pleased that the expanding roster of athletes flying the RTR logo is expanding with the addition of Seun Adebiyi. Seun is originally from Nigeria but graduated high school in the US and started college….at 14! He then went on to graduate Summa Cume Laude from U of Pittsburgh, at 14 he placed 4th in the US in his age group and beat the Nigerian 200 meter National record, he missed qualifiny for the 2004 Olympic trials by a mere tenth of a second.

Seun was also a finalist for a Rhodes scholarship. He is a graduate of the Yale Law School where he was also on the law review.

Seun was diagnosed for Lymphoblastic Leukemia and stem cell Leukemia,a rare combo and deadly. After undergoing massive chmo and full body radiation he underwent an umbilical cord transplant, approx 18 months ago. With the help of DKMS Americas Seun held the first ever marrow registry drive in Nigeria, and recruited 300 people in one afternoon. Now Seun has set his goals on qualifying for the Nigerian Olympic Skeleton team, a task he can accomplish and is training full time for.

Seun embodies what Team RTR is all about: inspiring others through sport to make a difference and join the marrow registry.

Tom and Seun will be setting speaking dates to tell their combined story of RTR, its mission, and the true example Seun is of this.

The link for our first Annual Golf Event is open and CLICK HERE to play or buy a tee sign that you can customize with a message…the event will raise money with proceeds to pay for donor testing kits as well as to go to financially needy families of kids who have had or will have stem/marrow transplants. 

Despite having a nasty crash last week (dont tell the doctors), Pam is back up on the bike and riding, albeit indoors, and still plans to compete next weekend in the Phila Triathlon. A true inspiration to all.

We will also be hosting a marrow donor sign-up at the Phila Tri expo 6/24/-6/25. So come by!