Friends of Heroes Affiliate Team – Angel’s Wings

Team Angel’s Wings is a new Friends of Heroes affiliate, but they are not new to Light The Night or blood cancers. National Co-captain Jenn Burgess interviewed Helen Bailey, captain of Angel’s Wings to find out more about why they participate in Light The Night.

Angel Marie

Can you tell us a little bit about how your team Angel’s Wings started?

My son, James Rodriguez, had a friend/classmate whose younger sister, Angel, developed leukemia. Angel’s mother asked for donations, help and support for Light The Night, so I decided to get a team together of James’s classmates to help.

Two years later, my mother Estela Bailey was diagnosed with non Hodgkins lymphoma. And, a grandparent of one of our walkers was also diagnosed with cancer, so I decided to keep the team going in their honor.

How are Angel and your mom doing today post-treatment?

Angel is doing great! She was the honored hero for last year’s Light The Night walk and is now in first grade. Angel only needs to visit the clinic for treatment every six months (instead of every day!) which allows her to live a “normal” life. Due to additional complications, doctors did not share hope that she would make it this far. We’re thrilled that she proved the doctors wrong!

My mom is back to being a mom! I am grateful she is doing well and here to watch my kids and grandkids grow up.

It’s so good to hear they are doing well!! Events like Light The Night fund blood cancer research and helps families through patient services programs. Survival rates have increased dramatically in the past 30 years, yet a cure is still needed.

Let’s talk about Light The Night! What made you decide to become a part of FOH as an affiliate?

A new co-worker (Jenn) invited me to a local baseball game which was a fundraising and awareness event for Light The Night. She told me about her team, Friends of Heroes, so I looked up their website and between what I read about the pediatric cancer research grants and the excitement she showed about their success stories and fundraising, I decided to join her team as an affiliate.

Please share a little bit about your planning leading up to the walk. What are your plans for team fundraising this year? Is there anything that worked well in the past?

I am trying to recruit as many members as possible at work and school, plus friends and family. I want to get everyone together for a meeting to decided other ways to raise money like making pins, buttons, ribbons, etc. to sell. Maybe hold a car wash, bake sale, etc.

I also have the help of my daughter, Nicole Bustinza, as a co-captain. She is able to run errands, deliver walker information and pick up donations when I’m at work. Together, we are able to reach more people.

You’re good at recruiting and motivating people. What do you say to encourage people to walk and raise money for Light The Night?

I tell them that participating in this walk may one day help save the lives of their children, family or friends like it did for Angel and my mom. What cause could be better?

When someone asks you what Light The Night means to you, what do you tell them?

It gives me the opportunity to help save lives!

Helen, thanks so much for sharing more about your team and what you are doing this year. Is there anything else you would like to add?

I think since so many children have been afflicted by this disease, we should target schools to help.

Well said! The Leukemia & Lymphoma Society has a priority to help young patients and has initiated the Trish Greene Back to School Program for the Child with Cancer. The program is designed to help parents, teachers and administrators when a child in their school has cancer. Programs like these can help schools and care givers provide the best possible chance for pediatric patients to renter their schools and succeed.

To donate to or join Helen and her team, visit Team Angel’s Wings.

Check out the photos from the baseball game fundraiser and awareness event. Walkers who purchased tickets walked onto the field with the twinkling lights. For each ticket purchased, $5 was donated directly back to The Leukemia & Lymphoma Society. To plan a similar event in your city, contact the Community Relations Manager for your local ball club. (Mouseover the sides of the large photo to navigate.)

A Beautiful Future of Life Lived; Not A Life Lost

Affiliate Team Courtney’s Angels

Team Courtney’s Angels is a new Friends of Heroes Affiliate Team this year and is captained by the mother-daughter team of Debbie and Ashley. They formed the team in memory of their daughter and sister Courtney. This month, Debbie has graciously taken time to share about her daughter’s battle and how Courtney faced life and “lived strong”.

Can you tell us a little bit about your daughter Courtney?
I know that everyone thinks that their child is amazing, and that is exactly how I think of Courtney. As a young child, Courtney was definitely a Mama’s girl, never wanting to be far from my side. She was the youngest of three children, the baby of the family. But, during her first bout with cancer at 13, she matured and grew into a strong, compassionate young girl. She had a zest for life and was a friend to everyone she met.

Court was a cheerleader all throughout her high school years. She loved to dance and be goofy. She was a girly-girl to the max, she loved rhinestones and blinged out everything she owned – but she also had a cowgirl side that loved fast horses and big trucks.

Courtney was a 6-foot tall, stunningly beautiful young woman with big dreams. She had the most incredible spirit and was never one for self-pity – never once asking “why me?” Courtney is the strongest person I know, she is my hero, my angel.

Can you share about Courtney’s diagnosis and her treatment?
Courtney was originally diagnosed with Acute Lymphoblastic Leukemia in September 2000 at the age of 13. It was just a few weeks after she began her freshman year in high school and our lives took a drastic change. We found ourselves thrust full force in the world of childhood cancer and hospital life.

Court went through 10 months of intense chemotherapy, followed by 2 ½ years of maintenance chemo. In December 2005 we excitedly celebrated her being “cured” – she had been in remission for 5 years and we thought she had won the battle.

So, needless to say we were stunned when just a few months later in May 2006, we learned that she had relapsed. The doctors first told us that they would be treating her with basically the same protocol, but they suggested that we have the family tested to see if any of us were a potential bone marrow match.

When we learned that Courtney’s older brother, Gabriel, was a perfect match, we felt that it was the answer to many prayers. The doctor’s left the final decision up to Court, but encouraged her to consider the transplant.

The treatment was much more difficult the second time around and Courtney experienced many complications. She developed a severe case of Tiflitis after her first chemotherapy treatment which resulted in a 36 day hospital stay during which she was not able to eat or drink anything by mouth in order to allow her stomach to heal.

The weeks following her transplant were really difficult, with more complications – she suffered a blood clot to her lung. But things finally began to turn for the better. We were just a few days away from being discharged from the hospital when Courtney suddenly developed a horrible infection, flesh-eating bacteria.

In a matter of a few hours, things took a drastic change. The doctors tried to save her by removing her leg, but the infection was too much for her compromised immune system and Courtney passed away just 1 week before her 20th birthday.

No words could ever express our sympathy for the loss of your daughter. Unfortunately, learning of stories such as the journey of your precious daughter is a prime example why events such as Light the Night are so important, to help aid in the funding for research. The monetary value of research is priceless when advancements in treatments can be offered to help save the lives of these children.

What are some of the lessons Courtney has taught you through her journey that you apply to your lives today?

As she fought her first battle, I saw that it was changing her and molding her into the person she would live to be – enjoying life to the fullest, laughing her infectious laugh, and touching people’s lives in such a special way. Courtney loved people and was so accepting of everyone. She made everyone she met feel like they were a true friend.

Just days after Courtney died; I received an email from a girl that Courtney knew. This girl was not very nice to Court in high school, but had been communicating with her over the Internet for a few weeks before Court passed away. She was having some minor medical problems of her own. Following is part of that email:

“I just wanted to let you know what an inspiration Court has been to me. I don’t know whether she was a gift sent to me from God, or just plain good luck, but she was my backbone, and my inspiration for the last few months. For her to be in so much more pain, and so much more traumatic problems than me, she was the stronger person, writing me emails telling me I would be okay, and everything would end up good. She told me that no one’s problems should be compared or measured… most importantly – she told me how God only gives people like us these kinds of situations because we are the strongest… and we are the ones who can go through it.”

That was the kind of person my daughter was, more concerned for others than she was for herself. Her story has touched the lives of people around the world, including some very famous people.

Because of a meeting that he had with Courtney, Derek Lowe (Dodger pitcher) has started D. Lowe’s Heroes, helping the kids being treated at Mattel’s Children’s Hospital at UCLA. Courtney’s wanted to become a Pediatric Hem/Onc nurse. She wanted to make hospital life better for the kids at UCLA and I will spend the rest of my life making her dream become a reality. We are in the process of starting a foundation “Courtney’s Angels” to support the fight for a cure.

Courtney left a beautiful imprint in the world with her selfless example. One that isn’t forgotten with her death.

Have you been involved with Light The Night in the past?
I had actually planned on participating last year, but Courtney was scheduled to be admitted to the hospital for her transplant the day of the walk. So, this year was the first time I had been to a Light the Night walk. What an incredible experience.

I was also able to experience a TNT marathon for the first time. Last December, Courtney’s brother Gabriel (her donor) ran the Honolulu marathon in honor of his sister and I was lucky enough to be able to meet him at the finish line. It was just 3 weeks after Courtney passed away.

What made you decide to become a part of FOH as an affiliate?
It’s kind of funny, but I was on MySpace and saw a bulletin from FOH. I went to the site and decided right then that I would try to contact you to become an affiliate. I wanted the money that Team Courtney’s Angels raised to have the biggest impact it could.

Well, just minutes later, I went on the website that I had set up to keep family and friends informed of Courtney’s progress (freewebs.com/courtneynicole) and there was a message from FOH in my guest book. I knew then that it was meant to be – Courtney was somehow telling me that I needed to join FOH.

Thank you for letting us honor Courtney as one of our team heroes. We are so glad you are part of FOH!

Please share a little bit about the planning leading up to the walk. What were your plans for your team fundraising this year?
Most of the fundraising was done online. Ashley, Court‘s older sister, posted a lot of bulletins on MySpace and I used the website that I had set up to keep family informed about Courtney’s. We didn’t know what to expect since this was our first year being involved. We set a team goal of $2,000 and were pleasantly surprised that we were able to surpass that goal. Next year we have plans to do more fundraising and will get started a little earlier.

Now for the evening of the walk itself…

How many team members did you have on the team Courtney’s Angels this year? Please share a brief description about your walk and how it went.

Team Courtney’s Angels walked in September. We had 38 walkers and our team raised $3,332.

The walk was incredible. It was very emotional – it was exactly one year from the date that Courtney was admitted for transplant, and the walk took place on the campus at UCLA (she was treated at the hospital at UCLA).

One of our walkers was a teenage girl who had been transplanted just a few weeks before Courtney and is doing well. Ashley and I proudly carried a “gold” balloon in honor of Court. I can’t wait for next year!

Is there anything else you would like to add?
November 14th will be the one-year anniversary of Courtney’s death – November 21st would be Courtney’s 21st birthday!

No family should have to endure the year that our family has endured, no family should have to watch someone they love suffer the way Courtney and other kids with cancer suffer, and no parent should have to bury their child.

I will do everything that I can to spread the word about FOH. I will do everything that I can to raise money to find a cure for a disease that is robbing families of their children and robbing children of their childhood.

Thank you, Debbie, for sharing Courtney’s story with us!

Courtney was an amazing fighter, helping others even when she was going through difficult treatment herself and making a positive difference to all she touched, in life and even after her death.

With the approach of Courtney’s birthday and the one-year anniversary of her heavenly birthday, we remember you and your family in our thoughts and prayers.

For more information, visit http://www.friendsofheroes.org or contact teamleaders@friendsofheroes.org

Introducing Team Jackson’s A.L.L. Stars – Friends of Heroes Affiliate

Please share a little bit about your precious son Jackson?

Jackson was born May 23, 1999 and was a healthy baby boy. He has always been a constant joy and was a very easy- going baby. We celebrated Jackson’s 8th birthday back in May and it’s hard to believe he is now a 3rd grader. In Jackson’s free time, he loves playing sports. His favorite is soccer. He also loves playing basketball and baseball. Jackson is one big sports fan! He just about loves any sport out there. He is a big ESPN fan.

Can you share about his diagnosis with cancer, his prognosis and how it has affected your family?

Jackson experienced a lot of joint and bone pain for about 3 months. It progressively had gotten worse and it had come to a point where he was not able to walk on his right leg. We had taken him to his pediatrician’s office on several occasions and when he was no longer able to walk it was very alarming to us. His pediatrician ordered a CBC for Jackson “to rule out leukemia” and unfortunately it was not ruled out.

The next morning was the scariest day of our lives. Our worst nightmare had come true. We were told that Jackson had leukemia and to get him to UCSF Children’s Hospital in San Francisco as soon as possible. Jackson was diagnosed with Acute Lymphocytic Leukemia on November 22, 2004. Our lives were immediately changed. Jackson was admitted for 3 weeks and his chemotherapy began immediately. Jackson’s chemotherapy treatment will last approximately 3 ½ years. He is scheduled to go off treatment February 2008.

The last three years have been long and exhausting. But, we always try and make the best of our lives. We truly appreciate each moment we have together as a family and I never take for granted hearing, “I love you Mom,” or playing with my children.

Have you been involved with Light The Night in the past?

This will be our 4th year participating in Light the Night. My husband and I participated with Jackson in 2000, prior to his diagnosis. We also participated in 2005 and 2006. We are very excited to be involved again this year. It is such an amazing evening. We are so glad we are able to celebrate Jackson’s life along with other survivors and remember those lives that have been lost to blood cancers.

What made you decide to become a part of Friends of Heroes as an affiliate?

I really like the fact that we are working together with other affiliate teams to stop childhood cancers. In honor of raising $100,000 or more The Leukemia and Lymphoma Society have allowed FOH to name a research grant in support of raising awareness of pediatric cancer. For the last two years FOH has selected UCSF Children’s Hospital, Researcher Dr. Weimels as the grantee for a prestigious grant.

(For more information on Dr. Weimels, you can follow the link below for a letter where he talks about his cutting-edge research http://www.friendsofheroes.org/walkerresources/letter_DrWiemels.pdf )

We were grateful to have you as an affiliate in the 2006 season and are thrilled to have you team up with us again.

Please share a little bit your experience with the 2006 walk season and the planning leading up to the walk. Did you have any plans for your team fundraising last year?

The last two years we have not been able to focus on our fundraising like we are this year. Now that we are getting closer to Jackson going off treatment, we are trying to focus more energy towards Light the Night. We have doubled our fundraising goal this year and hope to surpass that. We have done some fun fundraising events, such as dine and donate nights at local restaurants, a fundraising bunco evening and also a kids’ night out fundraiser. We have been having a lot of fun!

Now for the evening of the walk itself…

What are your plans for your team leading up to the 2007 walks?

We are very excited about the walk this year. We have included a special boy who lost his battle to leukemia in May to our team. He fought a relatively short but very hard battle and he will forever be remembered as a true hero. We are proud to honor our friend Jacob Mihalca. We are focusing more on raising funds and awareness and are looking forward to raising more money.
Thank you for sharing Jackson’s story with us, we will continue to keep him in our thoughts and also will keep Jacob in our hearts during this year’s walks as well.

For more information, visit http://www.friendsofheroes.org or contact teamleaders@friendsofheroes.org

Team Friends Of Heroes Pays Tribute To A Very Special Hero

One of the sweet faces in our Friends of Heroes collage is that of 3-year-old Noelle Naylor. After the Wisconsin Angels reached out to the Naylors, her family joined Friends of Heroes as one of our original affiliate teams in 2005, just months after Noelle’s diagnosis. Noelle was a spunky, loving, and courageous young girl, daughter and sister, whose life was cut way too short.

Our deepest condolences to the Naylor family for their sudden and immense loss. You are in our thoughts and prayers. Noelle was an inspiration and true hero to all of us and her absence is felt – even for those of us who did not have the pleasure and privilege to meet her in person. She is forever in our hearts.

Yokayo Bio-Fuels: Affiliate Team Profile

Can you share a little bit about your Affiliate team Yokayo Bio-Fuels?

Yokayo Biofuels is a small company located in Ukiah, California. We make and sell biodiesel, which is made from used restaurant oil and grease. You can read more about us at www.ybiofuels.org.

Have you been involved with Light The Night in the past? Had your company?

I have been for the last three years, through the various incarnations of Friends of Heroes, (Allie’s Angels, Friends of Allie). The first year, I was unable to travel to the actual event, as I’d had a c-section and a difficult recovery not too long before. I had a balloon sent to me by the local office, and I walked down the main street in my town with my two children in their stroller. The next two years, I was the team captain of a really small team, mostly of my family and me. I have raised almost $2000.00 for the LLS in those three years.

The company I work for has never participated before, but oddly enough, there is a more personal connection. My boss’s sister works on the pediatric cancer ward at UCSF, and is one of the nurses for our honored child, Jackson.

What made you decide to become apart of FOH as an affiliate?

The company I work for is very environmentally conscious, and as cancer is often caused by exposure to chemicals, they felt right this was a good cause for them to be involved with.

How did you go about approaching your company to see if they might be interested in forming a Light the Night Team?

I had to do a presentation at one of our general employee meetings, which I messed up completely. I started crying five lines into my speech. I had pictures of Allie and the other child I walk in memory of, Cole Regan, taped to the wall behind me, and I couldn’t even get through it. I had to have my boss take over for me. Needless to say, it must have been a good speech, because everyone agreed to participate in some way.

Do you have any advice for someone that is thinking of approaching their own place of employment about forming a company affiliate team?

The worst thing your company can say is no, and you won’t know if you don’t ask.

Do you think working as a LTN team has had any effect in your actual office environment?

No, it’s a pretty tight knit group of individuals already.

What are your team goals for this year?

We have a combined goal of 1000.00 between the Yokayo Team and the Friends of Heroes team.

How is your team organizing or planning for the walk? Does your team have any fundraisers or events planned leading up to the walk?

The weekend of August 18th and 19th, there is a huge festival that we are involved with called SolFest, and we are going to have a booth there, and be asking for donations from people that stop by our booth. It usually draws in about 10000 people in two days, so I hope that we can earn a lot of money that way.

We are also going to raffle off 50 gallons of fuel to our local customers, and sell the tickets for 10.00 dollars a piece, with a limit of 200 tickets. I have a feeling that will sell out rather quickly, because, honestly, who doesn’t want a chance to win free fuel? We are also just going to ask for donations from our customers, either when they walk in the office or by letter to the ones that we deliver to.

You shared with us this is the first year for your affiliate team, however you have walked for FOH in previous walks, can you share a little bit about your LTN walk last year?

Last year our walk was the last Friday in September, and it was a beautiful night. My husband and my children were my teammates, and we were “honorary” members of another affiliate team, Jackson’s A.L.L. Stars. Every year when I have seen Jackson at LTN, I have such a hard time believing he has cancer; he is so healthy and vibrant. Seeing that makes me want to continue the fundraising effort, because every child should be able to win the fight against this awful disease just like Jackson.

I know that no matter how many times I participate in Light the Night, I will always be in awe of how beautiful the balloons are when they are lit up. I just wish that their beauty could be used to signify some other purpose.

Anything else you would like to share?

I am so proud of this remarkable group of people, and proud to be a part of it! I know in my heart that we will reach our 1 MILLION DOLLAR GOAL!

Jenny Scott, if you are reading this, thank you so much for having the bravery to share Allie’s story with the world, and for opening all of our eyes to the world of pediatric cancer. The people that have opened their hearts and given their time to support this cause have renewed my faith in humanity as a whole. Allie’s story was just the beginning of something so much bigger, and we should all be so very proud of all that we have accomplished as a result of her life. I know my life is forever changed, and I am grateful for it.