Showing posts with label LLS. Show all posts
Showing posts with label LLS. Show all posts

Wednesday, May 22, 2013

A beautiful ripple effect

Last Saturday  was the grand finale for the 2013 Man and Woman of the Year campaign for the Leukemia and Lymphoma Society.



One year earlier, I had the honor of being a part of Cassandra Perkins Woman of the Year campaign and it is a memory that I will always treasure.


I couldn't have possible written a better ending than the one that unfolded.

My son Adam and I sat at the table with Dr. Jeff Matous and his daughter Catherine.  Catherine ran as a woman of the year candidate in 2011 during her freshmen year in high school.



Catherine's ripple effect inspired me to nominate Cassie to run the following year during her freshman year in high school.  Cassie to became the youngest person in the state of Colorado to run as a candiate for this campaign.

At the kickoff event last year Cassie met a young man, Michael Guglielmi who ran for Man of the year in 2013.

Cassie, Ralph and Michael at 2012 MWOY Kickoff

Michael ran in honor of his Dad, Ralph Guglielmi who is a blood cancer survivor.  Ralph is a former Man of the year winner from our chapter so Michael was indeed following in his father's footsteps.

The entire audience was thrilled when Michael was announced as this years winner.  Michael is 17 years old.

I had written last year, that Michael's decision to run was part of the ripple effect that Cassie created during her campaign.

It is the great mystery of our lives as we never know how what we do might touch and change the life of another person.

So from Catherine, to Cassie and now Michael, the seeds you have planted are taking root.  The beautiful ripple effect you are creating is inspiring others to take action and live unbound.

In love and gratitude to these three young and inspirational people.

2013 Man of the Year with Laurie Maeves

Sunday, June 6, 2010

Virtual 10K run for LLS





I ran in a virtual 10K this morning to benefit the Leukemia and Lymphoma Society.

One of my awesome Facebook, Twitter, TNT friends Courtney was hosting a virtual 10K.

I lined up at the start line at 7:00 and off I went to run in some of my favorite areas of Denver.



I took an early lead and never looked back :)



                                          Running East on 7th Avenue towards Colorado Blvd.  



                                         One of many quiet and shady tree lined streets.



                                                   Love being mindful and enjoying the awesome
                                                               beauty of this city.



Oh my gosh, it was so hot this morning.  I tried best as I could to enjoy the run and not think about the situation at work. 

I put on a burst of slow and finished my 10K run in 1:03:10

Thanks Courtney.  Best first time 10K race director ever!

                                   

Wednesday, April 7, 2010

LLS Man/Woman of the Year Midway rally

I went to the Rocky Mountain Chapter Man/Woman of the year mid year rally tonight after work.

We got to meet the boy and girl of the year.  They are the reason, the inspiration for the men and woman who are putting themselves on the line.

This is one of many of the signature fund raising campaigns for the Leukemia and Lymphoma Society.

This is a 10 week contest where each candidate runs to become the man and woman of the year and every dollar that is raised counts as a vote.  The candidate with the most votes($$$) wins.

It was a nice night.  I got to chat with the Mom and sister of the former boy of the year Robert.  Robert's sister Cassandra is running in honor of Robert this year.

How awesome is that for both of them.

This was a night full of hope, determination, inspiration, commitment.

When I got home I read an email from my Mother. 

Cancer struck once again in our family.

Monday, August 10, 2009

Brittany and Brandan fight on

Brandan went on his Make-A-Wish trip last week to go on a Disney cruise with his family.

My friend Brittany who is a 8 1/2 year AML survivor was able to spend some time with Brandan before they left and I suspect she may have spoiled him just a little bit.

I think this is pretty cool. Two of the heroes that I ride for, run for, spending some time together.

Brandan has a rare and dangerous form of Acute Myelogenous Leukemia. He has a long and difficult road ahead of him, so please keep Brandan and his family in your thoughts and prayers.

I met Brandan for the first time at the Team in Training Winter kickoff last year. Brandan is about the same age as my great nephew Keegan. So hard to imagine how different their young lives are.

I am so excited for this Thursday to arrive. Brittany is moving back to Denver! I am going to meet her at the airport and if time allows we will run over to the Mile High Station for the Denver Light the Night kickoff celebration.

Brittany is an avid volunteer for the Leukemia and Lymphoma Society. When she was in Orlando, I don't know how many events she went to for the Leukemia and Lymphoma Society, in addition to the time she spent volunteering at Give kids the World. Every time she has a chance to volunteer, raise awareness, give something back to the cancer community she is there.

Brittany and her family have raised over 100,000 through the Team in Training program.

Relentless for a cure and Brittany go hand in hand.

It is going to be great to have her back in Colorado and have her lend her passion and support to the Rocky Mountain Chapter.

Game on!

Wednesday, June 17, 2009

Turning the page

Today marked the end of an era for me.

As Monica Geller explained, "an era is defined as a significant period of time. Maybe it wasn't significant to you, but it was to me!!!".

I attended my last board meeting tonight as a board of trustee member for the Rocky Mountain chapter.

I have been on the board since October 2002. I have to step down from the board(MRO, mandatory roll off) per the by-laws of the society.

I have mixed feelings about this.

In some ways I am looking forward to turning the page and seeing what happens next.

The last two years have been very difficult, marked with the loss of team hero, Gary Taylor, board members, Don Austin, Patty Kaufman and of course the biggest loss of all to me was marked by Kelly's passing 15 months ago today.

Patty was the first person to reach out to me at the first board meeting after Kelly died and shockingly she was gone 3 months later.

I have made some great friends, people that have had a huge impact on my life. I have become friends with people in other chapters that I have never met, Shayna, Jeffrey, Sarah, Kristin. People who are all unified in the efforts to find a cure for blood cancers.

I had the best cycling coach(Gary Thompson) ever during the 2003 season for the Lake Tahoe Century ride. Gary was kind enough to send Kelly a card for her birthday in 2001 when we thought we were about to lose her. That touched me greatly that he did that for her.

The staff for TNT, Light the Night, School and Youth, Man/Woman, Patient services are simply the best.

Many thanks to Anisa, Ashley, Mackenzie, Cathie, Cindy, Joni, Amanda, Tamara, Kelly, Andrea, Lynn, Lori, Katie, Georgia and a huge thanks to the executive director , Rebbecca who has helped turn our chapter into a powerhouse!

I will greatly miss working with each of you.

To the Mom's that I have so much respect and admiration for(Catherine, Krisztina, Desiree) Your commitment to your children and your families in this fight is truly inspiring.

I wasn't sure how I would feel about this final meeting tonight. I am the board secretary and I am responsible for taking the meeting minutes so in many ways it was business as usual.

Rick Peterson who has been the Board of Trustee president for our chapter the last two years, presented me with an exemplary service award. I was doing fine until he got to the last whereas in the presentation.

I got choked up as he read these final words as I think it captures the spirit of what mattered the most to me over the last 10+ years that I have been volunteering for the Leukemia and Lymphoma Society.

Whereas, Ross has been a champion for all patients and carried the banner highest, from the moment they met, and now in memory of one very special hero-Kelly Grubb.

This is what has called my heart.

15 months ago today, Kelly died after an almost 12 year battle with her Leukemia. I still miss her each and every day, but I no longer feel the sadness and the sorrow the way that I did. I was so afraid to let go of the sadness as I thought if I did that I would let go of the love I had for Kelly. Now when I see her picture I can smile and be grateful and joyful for the time I had with her. The sorrow is gone, the love is not. It was a hard lesson for me as most lessons are.

Tomorrow, I turn the page and start a new chapter. Not much will be different. The battle rages on. There will be other rides, more Light the Night walks, maybe another marathon.

It feels all too familiar.

I want a different ending...

Monday, March 16, 2009

Oh no, IMADEAMESS

My two year great nephew Keegan gave me the title to my post. I thought that was fitting as I have the emotional stability of a two year old right now.

Brittany left me the nicest message on my cell phone today and I have been crying ever since I listened to it.

Brittany is going to featured speaker at a black tie gala fund raiser for the LLS chapter in Orlando on Saturday.

She went shopping at the Magic Kingdom today and bought an Eeyore stuffed animal. She plans on carrying Eeyore with her all day tomorrow to honor Kelly and will put Eeyore next to her on the podium on Saturday and share with the audience that Kelly is her inspiration for the night.

I am crying as I type this. I can't explain how much that has touched me. Brittany shares an unbreakable bond with Kelly and for her to honor Kelly and keep her memory alive in this way....

I don't know what to say.

I know Brittany will keep fighting for Kelly. It is such an honor for me to know such amazing people.

Please take a minute to watch this message to cancer here

Wednesday, January 21, 2009

All LLS, all the time

I started my day off attending a LLS bi-monthly executive board meeting before going to work and attended a TNT information meeting after work.

That is my idea of a productive way to spend time before and after work.

There were probably about 35-40 people at the meeting tonight, which is one of the best turnouts I have seen at an information meeting in quite some time.

I got to talk with one of my cycling teammates that I rode with last summer. I was really happy to see Daniel. Daniel's wife is a Lymphoma survivor and he shared some of Leanne's story during the mission moment. No matter how long I have been doing this or how many different stories I hear, every one is unique, compelling. . .

I had been looking forward to tonight for the last two weeks. I had signed up to help at this meeting when I saw Daniel was going to present the mission moment.

It looked like a very productive meeting and quite a few people signed up tonight. Take that, blood cancer!

Unfortunately blood cancer continues on it far too productive and torrid pace. My friend, Shayna is preparing herself for the possibility of losing another person she loves to Leukemia.

When and where will this all end? I don't know.

I do know that Daniel, Shayna and I will keep talking and writing about this, raising awareness, recruiting more people to this cause.

All LLS, all the time. 30 new people. Take that, blood cancer.

Wednesday, October 22, 2008

The marathon I never wanted to run













I was talking to a friend of mine at work last Thursday before I left work and I was telling her I was still struggling with my grief about Kelly. Kelly always seemed to sense when I needed to hear from her. I would be struggling, feeling discouraged and I would get home from work and suddenly an e-mail from Kelly would be in my in-box. I had made a special folder just to store Kelly's e-mails so I would always know when a new one came. My heart would leap every time. How did she know I needed to hear from her?


I got home Friday afternoon after running some errands and inside my mail box was a special delivery letter from Don and Patty(Kelly's parents). Inside the envelope was one of Kelly's bandanna's and a locket with a picture of her pinned to her bandanna. Kelly's parents wanted me to have something of hers to treasure before the marathon. That was so neat.

This was the marathon I hoped I would never have to run. A marathon where I was running in Kelly's memory instead of running in her honor. I have crossed the finish line of 15 other marathons, running for Kelly, running to honor Kelly. Can I do this? Can I finish what I began for her? The finish line awaits, 26 miles, 385 yards from the start.



My training has been off for weeks, my emotions are completely off kilter. For the first time before a marathon I really feel like I might not finish. I am so edgy. I have the emotional stability of a two year old the entire week before the marathon. I have the same feeling of dread I used to have before I fly. I know this is completely irrational and yet I can't shake it.




I have a picture of Kelly, Sarah and Laiken on the back of my singlet and ribbons with their names alongside their pictures. I also have a wallet sized picture of them I carry in a pocket of my running shorts.


The race started right on time. I lined up very near the end of the runners and walkers, took me about 8 minutes to cross the start line from when the elite runners had started. They would almost be at mile 2 before I crossed that start line. Now that it is finally race day, the irrational fears are gone. I am still not sure that I can do this. However, I know that barring a catastrophic event I will finish what I start. To borrow a made up word from my friend Dane , I have a lot of stubbornocity in me.


I crossed the mats at the start line and began running. What would the day be like, what would unfold over the vastness of 26.2 miles?


Most of the day was very quiet. It was rather strange, I don't think I talked to anyone during the entire marathon other than a couple of TNT coaches, shouted some Go Team to my teammates during the marathon. I usually strike up a conversation with someone for a period of time, but today was different.


As I had planned, miles 0-5 I ran as a tribute solely to Kelly. The start of the race takes us through lower downtown, Larimer Square, past the 16th street mall, Pepsi Center, Coors field, back through parts of downtown and then heads east up 17th avenue towards City Park. The first 5 miles pass fairly quickly. I am alone with my thoughts about Kelly, enjoying our time together.



I pass the 5 mile mark and mentally make the transition to running the next 5 miles in tribute to Laiken Kenwood who passed away on April 22 at the age of 13.



Earlier last week KFRG radio was doing a fund-raiser for Londa Lima Children's Hospital in California. This was a fundraiser that Laiken had participated in prior years and the radio station had a wonderful tribute to her. I got to hear her grandmother, her mother, and friends talk about her life. In so many ways she reminded me of Kelly. She lived her life in dignity, never complained about why she had cancer, cared more about others. At the end of the tribute I even got to hear her voice. She sounded so much like Kelly did at that age. It was almost like listening to Kelly again. I had tears pouring down my face as I got to hear her sweet voice.


I ran on thinking about Laiken and her family, about my friend Shayna who was doing a 1/2 marathon in San Francisco on Sunday. Shayna was walking for her mom, for Laiken and also for Kelly and so many others. More on that later.


Miles 5-10 route the runners into City Park for a couple of miles and then we head back out west on 17th avenue and then turn towards the south towards Cheesman Park. I saw one of the TNT running coaches(Wendy) as we ran up a hill towards Cheesman. Wendy asked me how I was feeling. I told her I wasn't having a very good day. She said she could tell from the look on my face. I was at mile 9 and I was already spent. I was 17+ miles from the finish line. I tried not to think about that. One foot in front of another. Focus on Laiken. I entered the park and saw my wife Sue, cheering for all of the runners. I asked her where the kids were and she said they were on the west side of the park.


I passed the 10 mile mark and began my tribute mile to Megan Dickey. Megan was a teammate of Laura's on her club swim team who had died a year ago also at the age of 13 from bone cancer.


Check out the tribute Megan's friend Jenni Greenwald is doing for her at http://www.lovelets.org/


I have often wondered if Jenni might have met either Mason or Bradan during her visits to Children's Hospital.
I ran on for Megan.







Picture in Cheesman Park. Picture of Kelly and Sarah on left of singlet, Laiken on right.

I saw Laura and Adam near a point in the park where I run with my nephew Keegan on Thursday night's. Luckily today I don't have to run today pushing a baby jogger. I asked my kids, "whereishe" about Keegan. Keegan says that all the time when he asks where Laura(LaLa )is. It sounds like one word the way he says it.


I pass the 11 mile mark and begin my tribute mile for Patti Kaufmann. Patti was a colleague of mine on the board of trustee's that passed away suddenly this summer. Patti was the driving force for the Denver, Light the night walk. The walk grew from 300 walkers in 1998 to over 6,000 last month. Revenue from the walk this year is 800,000 and counting. Patti was a very kind person. She never wanted to talk about her illness. Her focus was always on helping others.


12 miles, almost halfway. I begin running this next mile for baby Melina. Melina was diagnosed at the age of 3 months. I can't get my head around that. How is that possible? This is a really hard mile. It totally sucks to have to run a mile in memory of a 10 month old innocent baby girl. So sad. Her Mom is so sweet. I feel overwhelmed.


Mile 13-We are now running on one of my favorite parts of the course as we head east on 7th avenue past some beautiful homes on tree lined streets. I run this mile in honor of Brandon Hickey. Brandon is about the same age as my nephew Keegan. However Keegan is healthy, Brandan has an extremely rare form of AML. His disease is the first documented instance of this form of AML in 21 years. His Mom is hopeful that if Brandan survives that it will make it so much easier to help others that follow. I will see Brandan later in the day on the course. More to come on that.


Mile 14-I run this mile in tribute to Mason Bernard who is the team hero for the fall marathon team. Mason's mother Catherine is a teammate of mine this season. Coincidentally, I see Catherine running east on 7th avenue as I am running west. I shout out to her and Marianne, another TNT teammate that they look great. Catherine hurt her knee/IT band during our last long training run and has literally done no running for 3 weeks, but here she is. Running for her son, running so that Mason can cross his finish line with a cure. Catherine reminds me so much of Kelly's mom. I thought that was pretty neat that I saw her during Mason's mile.


Mile15-16. I had dedicated these miles to Brittany Ross and Kelly. Brittany is one of the team heroes for the Winter team. Brittany is a very fun, upbeat young woman. She loves her TNT runners. Who does she remind me of? Brittany and her family have raised over 100,000 doing TNT events. I had dinner with her a couple of weeks ago. She was telling me she had no bone marrow at one point during treatment for 275 straight days. Any kind of infection would have been fatal. Here she is now, about to graduate from college. Amazing.


Mile 16-Memories of running for Kelly on her 16th birthday, a birthday Brittany wasn't supposed to live to see.


Sue and I were at the PF Chang marathon on Kelly's birthday that year, we celebrated her sweet 16 birthday. Sue was the world's happiest marathoner that year. Kelly was so healthy at that time. It seemed like the cancer had been turned away forever....


Mile 17-18-I ran these miles for Sarah Larson. Sarah was one of Kelly's best friends. They both underwent transplants in 1999. The oncology nurses couldn't tell them apart. They both loved collecting Eeyore trinkets. I got to meet Sarah at Kelly's graduation in 2007. In a way I ran for both Sarah and Kelly, celebrating their friendship. What a bond they shared, yet they were just like other teenage girls. I don't think either of them let their experience with cancer define who they were.


At some point during mile 17, I saw Brandon Hickey and his mom at the east side of Washington Park. They had come out to cheer for the TNT runners. Brandan had a purple shirt he was wearing that said cancer survivor. It was so big on him. He looked like a little ewok. I hope he outgrows that shirt.


Shortly after seeing Brandan and his mom, a young lady yelled out to me. Go Team, I love you. Thank you for saving my brother in-laws life. I have never had anyone say anything like that to me before during a marathon. I almost started to cry as I tried to sputter out a thank you.


Mile 19-20. Back into Washington Park. I see Sue, Laura and Adam again. It is always a nice boost to see your family on the course. I am so tired now. I start talking out loud in my head to Kelly, ask her to stay with me. I start to cry a little. I had promised Kelly years ago when she relapsed in 2000 that I would run for her as long as she needed me. Now it is me who needs her, for as long as I am running.


I pass the mile 20 mark. I am at symbolic 1/2 point of the marathon.


The next five miles I run as a tribute to Rose, Molly, Marcy, Patty and Don. Kelly's family, my family.


At some point, think it was right after the 20 mile mark, I started to take roll call for everyone I was running for that day. I had my entourage, my team angels, Kelly and Laiken, Megan, Patti, Melina, my team heroes, Brandan, Mason, Brittany, my honorary team hero Sarah. When I would get the next mile I would add a new name, Rose, Molly, Marcy, Patty, Don. I had an awesome team propelling me to the finish line.

Mile 25.


I saw Mighty Mason with his Dad somewhere during this mile.


I run this mile for my family. They have been such a big part of this journey with me. I realize I have about 5 more minutes of running to go and I will be done. I am going to finish and I just start to let my emotions go, all the pain and sorrow for all of these months. I have cried so many times about Kelly and yet not really cried. Maybe this was what the day was all about, letting it go, feeling the sadness so I could finally move forward and learn to live joyfully as well. I am running and crying, really crying and out of nowhere the TNT head coach runs alongside me and asks me how I am doing.

I tell her I am okay, but I am losing it emotionally and incredibly she says come on you are almost done, you can do it. RATS. I don't need someone to help me run in. She keeps exhorting me to pick up the pace. The cleansing moment has passed and now I am racing for the first time all day. It was a rather ironic ending to the day and to top it off, I forgot to shout "God save the queen". Now I have to run another marathon.


I really can't describe all the emotions I felt as I crossed this finish line. Some of it was relief, it was finally over. I spoke at TNT kickoff for this season on May 10, 23 weeks ago. It was a long journey to reach this destination. I am so glad I was able to finish the race for Kelly and for everyone else I ran for on Sunday. I ran almost the same time I did two years ago at this race. Two years ago, I was so disappointed in the time I ran that day. This year I have no regrets about that aspect. I ran to the finish on fumes. I was out of gas at the 9 mile mark. I had to finish if I could for Kelly. I still choose to feel like I am running to honor Kelly, her memory as well for what she means to me and to so many others, but mainly I run in her honor. After all, I am Kelly's runner. That is what I do.

After the race was over I saw one of our team heroes, Sharon and asked her if she would mind a hug from a sweaty runner. That helped me a little bring some of the emotions back to the surface. I stood off to the side for a minute or so after that and just cried. I went over and hugged my wife and kids and cried softly.


I was able to check in at the TNT tent and chat with a couple of people and make it back to the finish line just in time to see Catherine Bernard cross the finish line. She was able to run the entire race without walking. These parents of kids with cancer are tough!



Catherine is just left of the TNT head coach wearing the white hat. It was a very touching moment to watch her finish. Her friends that did the 1/2 marathon ran in with her and are clapping for her.

Catherine with Mighty Mason share a priceless moment together after the race.



Rebecca Russell, our awesome chapter executive director and me after the race. Rebecca always willing to raise awareness for TNT is wearing a purple wig.


I am going to wash my singlet and then pin the pictures and ribbons I wore that day during the marathon and get a frame to put it in.





This is my friend Shayna(far left) and Cathie Nicolson. Cathie is one of the awesome girls on the TNT staff. This picture was taken at the Pasta Party at the Nike marathon in San Francisco.

Thought I would share this story from Shayna about Kelly.
Also... The strangest thing happened... I was wearing 7 TNT bracelets when I went to San Francisco... The one with Kelly's name was one of them... I was planning to send you the bracelet with the nametag after the race... And I had this amazing reunion with my boyfriend (whom I hadn't seen in 3 months!) at the airport, then we all went to the expo, then to Alcatraz... And it was when we got back from Alcatraz when I realized I was missing a bracelet... And of course, it was Kelly's... She jumped off my wrist at some point... I don't know if she's at the expo, or on a trolley car, or somewhere on Pier 39, or on Alcatraz Island... I just know that she decided to stay in San Francisco... I'm sad that I can't send you the bracelet, but glad that she's somewhere fun! :)

Knowing Kelly, I am pretty sure she decided to do some shopping at Pier 39.




Friday, July 11, 2008

At a loss


I received an e-mail this afternoon informing me that Patti Kaufmann had suddenly passed away.


Patti served on the board of trustees of the Rocky Mountain chapter for the Luekemia and Lymphoma Society. Patti was a cancer survivor of many years.


Patti's passion was the Light the night event. The Light the Night walks are really a community celebration. The walks are held at desk and participants carry either a red balloons(for hope), white ballons(for survivors) and this year they have added gold ballons(in memory of those that have left us too soon).


The Denver walk began as a pilot program in 1998 with very modest attendance. Last year the Denver walk site had grown to thousands of participants and revenue for the walks brought in over $700,000.00.


The Rocky Mountain chapter is on track this year to join the chapters that raise over one million dollars with the Light the night walks.


Patti was deeply committed to being relentless in pursuit of a cure for blood cancers. Her leadership, passion and enthusiam will be deeply missed by all of us that knew her and were privledged to be able to serve with her.


I just saw Patti at a board meeting three weeks ago. She was so excited about the walks this fall. We are all stunned by her passing.


Please keep Patti's family in your prayers.
We will continue to Light the Night with hope this fall for Patti, for Kelly, for Laiken and for everyone that needs hope.
Relentless for a Cure.


Monday, June 2, 2008

Here are some great candidates for 2008 and beyond


Saturday night was the grand finale for the LLS Man/Woman of the year event for the Rocky Mountain chapter.

Pictured in the photo from left to right, Dori O'Malley(7-Girl of the year) Dick Saunders(Man of the year), Jill DiPasquale(Women of the year) and Robert Jackson(11-Boy of the year)

Man of year Dick Saunders raised $89,664.00. Woman of the Year Jill DiPasquale raised $41,537.00.
Overall the campaign raised $225,400. There were over 270 people in attendance. This was a huge night for the Rocky Mountain chapter in the fight against blood cancer.

Sue and I had the privilege of sitting at the same table with Robert Jackson, his mother Kim and and his older sister Cassie. Sue and Cassie hit it off instantly. Cassie reminded Sue so much of Kelly's sister(Marcy) They had a great time chatting. Robert is quite a character. He tried to dip his mother Kim on the dance floor and had a great smile on his face the whole evening. His smile was infectious, reminded me so much of Kelly.

I liked one of the things that Jill Dispquale said during her acceptance speech . "There is no greater medicine than hope".

That is one of the things we talk about all the time during board meetings, being relentless in our efforts to provide support and hope to patients and their families.

Congratulations and heartfelt thanks to Dick and Jill for providing hope for Dori and Robert and to everyone that needs it.