Once upon a time....

UNDER CONSTRUCTION.....

FF Donors Winter/Spring 2008-09

I want to thank all of my generous FLETCHER FLYER CENTURY DONORS...without YOU there would not be HOPE...there would not be cures!!!

• Rich and Bes Stewart
• Debbie and Dennis Weber
• Susan Phillips
• C. Bowles
• Kim and R.T. Tepper, Jr.
• Blair and Mike Grappone
• Amber Williams
• Mary Jane and Randy Burton
• Robert Zukowski
• William and Ann Lagos
• The Lagos Family Foundation
• Allyson Wyld
• Cornelius Turnage, Sr.
• Lisa Kunz
• Jennie Shaw
• Art and Mary Ritter
• K.E. McFeely
• Lori and Mark Hatcher

WHY I do this....

Some of you know that I am of Italian descent. In Italy, St. Anthony is the patron saint of MIRACLES. That is why I chose to honor a young man I call "MIRACLE MATT" by doing the St. Anthony's Olympic Distance Triathlon last April 2008 and will SWIM the first leg of the AUGUSTA HALF IRONMAN in Georgia on September 27, 2009.

Matt’s recovery and good health today attests to the miraculous efforts being made by LLS researchers to find the cures...made possible by generous donations to the Society by folks like you.

When my college roommate’s younger brother was diagnosed with leukemia over 35 years ago, it was a death sentence. Children only had a 4% survival rate back then...he died 3 months later. Today, through great strides made by LLS researchers, about 86% of children are cured!

I want Matt to continue to be one of those children. His prognosis is excellent. He's now competed “the continuation phase" - TWO years, of chemo treatments EVERY WEEK (though much less harsh than those he underwent while in the throes of T-cell AL), and regular checkups that involved painful spinal taps every three months, standard procedure for cancer survivors.

I dream of a day where the remaining 14%, whose treatments don't currently work, will instead reach adulthood and live to see their own children grow up...that will truly be a miracle!

THE FOLLOWING POSTS from January-April 2008 (in reverse order) chronicle this incredible young man's successful battle back from leukemia and my efforts to raise funds and complete the St Anthony's Olympic Distance Triathlon in his honor as a member of The Leukemia & Lymphoma Society's TEAM IN TRAINING.

Matt Confirmed and I finish St. Anthony's....

Well, of course, Matt was confirmed and I finished St. A's in his honor. When times got tough...I thought about his struggle to regain his strength and even pulled on the memory of my late Dad who told me, "Never give up!"

I finished the entire event in 3 hrs and 41 mins despite some mistakes along the way...and was elated that I made it through the choppy swim [the elites complained!] in 43 mins and didn't see any SHARKS along the way[!], cycled my way around St. Petersburg in 1 hr 33 mins, and despite walking the first two miles of the 10K run along with lots of folks [90 degree heat!], I finished the run strong in 1 hr 15 mins! When I crossed the finish line and they put the medal around my neck [everyone got one] I burst into tears because I felt SO GOOD and realized that what I did was really easy compared to what Matt has already endured and what he still has to face. Thank YOU all for believing in MIRACLES!

TODAY, he had his every-three month SPINAL TAP at MCV Medical Center. Now, we wait to make sure that all is well and that the leukemia has not returned. I'll keep you posted.

MEANWHILE, some incredibly wonderful things are going on in Matt's life and he is not letting anything get in the way!

Today, I got this message from his Mom, Debbie: Hi Susan - we are actually at MCV right now and his spinal tap is done. He is getting an ImmunoGlobulin transfusion right now which takes about 4 hours. His "Battle of the Brains " Collegiate team qualified 4th out of about 50 teams in the semi-finals which is pretty good since the seniors are gone and it is the sophomores taking their place. Matt is flying out with the Collegiate team Friday morning to Chicago for the National tournament and returning Monday. We got a new addition to the Weber family Sunday. Matt is so excited. He has been wanting a dog forever. He started talking about it again Sunday and Dennis told him to look in the paper and there was an ad for Bischons in Richmond. Matt named him Luke after his confirmation name.

So, MIRACLES DO COME TRUE...but not without a price.
Pray for Matt and for all folks who get blood cancer!

CONFIRMATION and PORT-A-CATH....

CONFIRMATION... and “PORT-A-CATH”...those are my terms of the week. Here I am, trained and as ready as I am going to be only FOUR DAYS until my race...and all I can think of is CONFIRMATION and “PORT-A-CATH.” It’s also two of the only things that Matt and his family are thinking about right now.

In FOUR DAYS...on Sunday, April 27 while I am doing the triathlon, Matt will be making his CONFIRMATION. This is a time of great joy in the life of a Christian, an occasion of mature commitment, when young people baptized as infants put their "personal signature" on their parents' decision and knowingly claim their Christian identity.

A “PORT-A-CATH” is a device used to make the administration of chemotherapy into the venous system easier and works to reduce the risk of certain chemotherapy-related complications. A thin, soft, hollow plastic tube/catheter is tunnelled under the skin of your chest. The tip of the catheter lies in a small reservoir connected to a large vein just above your heart and the other end connects with the port which is about about the size of a quarter and is placed under the skin, in the upper part of the chest in the space between your collarbone and nipple.

Some chemotherapy drugs—the kind that Matt has to receive every week—can cause major problems if they leak from the veins into the surrounding tissues causing painful burning and destruction of skin and tissue. Such damage could be very dangerous and difficult to treat. This may happen if certain drugs are administered into a vein in the arm. Without it, doctors very often run out of usable veins. Matt must receive chemotherapy every WEEK.

MATT'S "PORT-A-CATH" HAS FAILED...is no longer working!

Now, just when everything has been going so well, a decision has to be made and, neither decision is an easy one. Matt must either have the surgery to remove and replace the existing “Port-A-Cath” – probably causing him considerable pain and discomfort –- while the new wound and surrounding chest tissues heal.

Or, he could risk having the chemotherapy administered into his arms facing all of the inherent problems associated with that decision...which are many and not insignificant!

And, if he has the surgery....when should he have it???? Before school ends...he can’t carry his backpack till the new “Port-A Cath” heals??? Or after...risking at least two chemo administrations before that occurs??? This is no way to greet the end of school and the summer break! No matter which decision is made, his summer will not be what it should be! Not only will he have to deal with the discomfort and any limitations caused by this turn of events, he will be reminded again that he has leukemia and that his battle is not yet over to eliminate its threat.

But, he WILL have this summer...and with the blessings of God granted to him on his Confirmation Day...many more.

In FOUR DAYS – Sunday, April 27, 2008, I will SWIM, BIKE and RUN in honor of Matt. He will be my inspiration...as he has been all these months of training...as I struggle to finish this exhausting event.

I will be thinking of Matt and his family... knowing for certain that my doing this triathlon for him and YOUR generous donations to THE LEUKEMIA & LYMPHOMA SOCIETY will someday help save other children's summers...and provide hope for the rest of their lives.

HAPPY CONFIRMATION, MATT!

FOUR WEEKS TO GO.....

St. A's is exactly FOUR WEEKS from TODAY!!! This is a view of the course map...ohmigosh! [BLUE=SWIM, ORANGE=BIKE and BROWN=RUN]

It's almost here...where did the weeks go? Tonight's swim training was tough...drills, drills and more drills! My "favorite"...swimming 50 yards freestyle...oh, yeah...but you can only breathe every FIVE strokes! I thought I was going to have a stroke! Your lungs burn like nothing you can imagine while you are doing it and then...it's over and you catch your breath during your 15 second "rest"...that's what our coach calls it!

Saturday is a huge bike clinic where they are going to teach us how to pick up something from the road while riding [if I drop it...it'll stay there], how to maneuver your bike in a straight line even when looking back [like I really want to see where I came from] or even better yet...how to put your hands on another rider’s shoulder while looking back [now WHY would I even think about doing that???]...oh well, I guess I have a lot to learn! Seriously, they will be teaching us some really useful skills that day...how to ride on open roads and in a paceline of 8-12 riders.

Some folks have been asking me if I am running anymore since all they hear about is the swimming and cycling! Well, duh...I love to run! But, since I know that I can easily run 6.2 miles...I'm not focused on the last leg of the triathlon. But, I ought to since my guesstimate is that I will be about 2-1/2 to 3 hours into the race by that time and starting to feel the strain of the day. At some point I know my brain will start to say, "Suck it up...FINISH...SURVIVE! You can do this!"

And, that is when I will think of Matt and his struggle just a little over a year ago when he was in the midst of his treatments and working hard to get to the next level. He will be my inspiration as I look down at the orange bracelet he gave me: STRENGTH - HOPE - FAITH - COURAGE! Time doesn't fly by when you have cancer...but now with every passing day he gets stronger...and those days retreat further into memory. "FINISH...SURVIVE! You WILL do this!"

100 METER DASH....He's back!

This time it's ALL about MATT! You see, while I have been training for this event to honor him, he has been training hard, too, practicing with his buddies again as a member of Collegiate's Track Team.

This is "MIRACLE" MATT...running the 100m dash for Collegiate School on Wednesday, March 19...racing towards the finish line!

A milestone in his recovery! A personal triumph for the brave young man who never gives up! This is what your donation to the LEUKEMIA & LYMPHOMA SOCIETY can do...make MIRACLES happen! GO MATT!!!