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

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

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.

Walk for ‘heroes’ fighting leukemia

By Loni Nannini

Special to the Arizona Daily Star

Tucson, Arizona | Published: 08.26.2007

There is life after leukemia, and Renee Rubio and the Friends of Heroes are taking steps to ensure it by raising funds through the Light the Night Walk for the Leukemia & Lymphoma Society.

Rubio is the captain of the Tucson contingent of Friends of Heroes, the largest national Friends and Family Light the Night team in the history of the Leukemia & Lymphoma Society. Last year, the local team raised more than $19,000 to fund pediatric blood cancer research and patient services; the national team had raised almost $850,000 as of January. Rubio said the endeavor is a labor of love for many of those involved.

“We consider the kids that are going through this heroes. It’s amazing how resilient they are,” said Rubio, who has experienced the reality of leukemia firsthand with her grandson, Gavin Kelley. Gavin, 5, is a survivor of acute lymphoblastic leukemia and is undergoing chemotherapy in Jacksonville, Fla.

Read more at:
http://www.azstarnet.com/allheadlines/197670.php

Article quoted from http://www.azstarnet.com

Often times, especially this time of year, I pay close attention to the amount of time and energy I spend on Friends of Heroes. I spend many hours a week on my local and national duties and sometimes I get lost in the tasks and have to remind myself of the importance of our mission, which is the children and their families.

Have you ever wondered what these families think about you as a volunteer with Friends of Heroes? How they feel about the time you put into raising money and awareness? These families, that inspired you, who have been through YOUR worst nightmare, ever wonder what they would say to you, given the chance?

Me, too.

So I asked them. I spoke with both Desiree Nichols, whose daughter Sammy battled leukemia and who is in now in remission. I also spoke to Melissa Rasmussen, whose two year old son, Donovan passed away in January of this year. I don’t think any one of us will ever forget his beautiful big eyes.

What would Melissa say to you, if given the chance? “Besides Thank you, I hope that volunteers everywhere and especially for LLS know that by giving a little can CHANGE A LOT. Volunteers everywhere have an enormous impact on how parents like myself feel when we look to the sky to our sweet angels and know that there are PEOPLE THAT REALLY DO CARE!!! During every treatment and every procedure I felt so helpless and alone and people that made the most difference in my life were people I didn’t know personally but were volunteers at hospitals and at every event FOR LLS. To date I have been apart of 7 different events and I have never felt more at home or comfortable during every event and every training. I am going to be apart of LLS in some capacity for as long as I can and perhaps a volunteer!”

Desiree Nichols, who is an affiliate team with FOH says that “being part of Friends of Heroes, raising funds and awareness for LLS is a great satisfaction. You meet so many wonderful families, caring people, and make a HUGE difference as one team. You have an awesome team behind you encouraging you, supporting you, and helping you the whole way! I’d like to stress to each and every walker to please remember this can happen to your child, niece, nephew, grandchild, etc. Today is the day to make a difference. Today is almost gone, and tomorrow may never come!”

Desiree continues, “Friends of Heroes means a great deal to the Nichols family. They have pretty much been there from the beginning of our journey through childhood cancer. We have met a lot of very special women and other cancer families that helped us emotionally in our time of need. Through endless guestbook signings, chatting with me when things were tough or celebrating joyous moments, and even helping me fundraise for the society countless times. Friends of Heroes will always have a special place in my heart. As long as I am alive I will always help them raise funds for LLS in hopes one day no child will have to endure what my daughter went through!”

When I read Desiree’s thoughts on Friends of Heroes, I can’t help but feel a tremendous sense of pride in that she feels exactly what we have always strived for. Mission successful for the Nichols Family. Mission continues for countless other families in their time of need.

Don’t forget the power of Friends of Heroes. The power of you.

In closing, you must know, whether you raise $10 or $100 the gratitude these families feel toward you and our entire national team, Melissa sums it up for me “I think the most striking emotion that I get when I see people come out and volunteer their own time is enormous “GRATITUDE”, gratitude that someone somewhere has touched their lives and that they are willing to go out and be amongst those that are still surviving and yet also opening their hearts to those remembering their angels that have been taken by such a devastating CANCER.”

-written by National Co-Captain Beth F.

WDYDWYD?

Do you know the first basic key to fundraising success? I bet you’re aching to know so you can implement it at your next awareness or fundraising event or add it to your active.com page!

If I told you the answer, would you commit it to memory and never forget it? Would you share this wisdom with a friend or neighbor? Are you ready for the answer?

WHY???

Really, that’s the answer. WHY do you do what you do (or WDYDWYD)? The foundation of being a successful fundraiser is knowing why we’re raising money.

As Friends of Heroes, we have a Mission Statement (to the left) that establishes our purpose and reason for joining together. It sounds great and looks good on paper but, in your heart, why are you a part of Friends of Heroes?

Like many of you, I was deeply touched by Allie Scott’s story three summers ago. I’ve lost a family member to leukemia and have a friend with myeloma. Along my journey with FOH, I’ve met countless others who have been affected in some way. I carry these stories with me as inspiration to raise awareness, to find a cure and make a difference. Without these connections, it would be easy for me to lose interest in fundraising and to take our Mission Statement for granted.

If you’ve lost your passion, take time to reflect and to rekindle your fire. Fundraisers who believe in the cause with a passion in their hearts can convey the need for a cure with purpose and persuasion.

Basic #1: What is your personal motivation? Why is Friends of Heroes and Light The Night important to you? Be sure to check out our WYDWYD Project.

What is holding you back?

The second basic key to fundraising success is to address your obstacles.

Is it a lack of time? We make time for the things that are important to us and find ways to get them done. Start early on your fundraising or make a plan and pace yourself to reach your fundraising goals before your walk.

Lack of ideas? This is where teamwork comes into play – we share ideas and resources! The team message board [http://friendsofheroes.proboards80.com] is the perfect place to bounce ideas off of other walkers and find inspiration and support. The monthly newsletter and website [http://www.friendsofheroes.org] also offer ideas and tools to help you.

Fear? Don’t be afraid to try something new or out of your comfort zone. Don’t be afraid to send that second (or third) email blast to remind people about Light The Night. Go for it and see what opportunities open for you!

Complacency? This is only a state of mind. See Basic #1 above and search your heart for the answer. Reread a Caringbridge site that moves you. Surround yourself with people who inspire you and let their energy ignite your passion.

No local walkers? Work on small scale fundraisers like a yard sale or recycling ink jets for cash/LTN credits. Donate the proceeds from a Tupperware party (or something your friends will like). Start networking! This is a valuable personal skill to develop. The more people you talk to and meet, the greater chance you might find a new walker or LTN donor.

Let me tell you a little secret: I’m not a great fundraiser. My first LTN I raised $110. The second year I raised $100 and recruited people who raised over $300. Last year, I went after a corporate sponsor and our family raised $600.

Learning to raise money has been a growing process for me; I’ve had to work at it. At points along the journey, I have dealt with each of the issues above. Instead of giving up, I turned it into a personal challenge and focused my thoughts on the kids and families who will benefit from the patient services and cancer research. Every dollar counts!

Basic #2: By identifying the areas that need work or stop you from succeeding, you can create a plan to move forward or seek the help you need. To find activities that will help you fundraise and build your team, see the FOH Team Point Challenge!

The Power of One

One blue-eyed baby ignited our fire. One person shared the need for a cure with family and friends and it spread like wildfire as local LTN teams were formed. One national team joined in spirit to raise a phenomenal amount of money and support families through kind words. One million dollars – our ongoing fundraising goal.

As one team of individuals connected by the internet, we’ve shared ideas and combined our talent and resources to create a powerful synergy. Despite being separated by miles, we’ve offered each other moral support and encouragement. Who knew that our passionate efforts would result in three pediatric research grants named in our honor!

Can you imagine how much we would grow if we each secured one corporate sponsor, recruited one affiliate team, held one awareness day, got one paper balloon merchant, etc.??? Our combined efforts would add up quickly!

Basic #3: Teamwork is essential to reach our goal! Use the team message board to get involved, encourage your teammates and help build our high-performing team. Visit our team forum at http://friendsofheroes.proboards80.com/

Basic #4: Don’t underestimate your abilities or reach in your local community even if you are a team of one. See article on Awareness Day Events and Team Tidbits section to read what others are doing.

The Million Dollar Plan

This year, we are closer than ever to reaching the Million Dollar Goal! The fact that we are even close to a million dollars is amazing! You should all be proud to be a part of this unprecedented effort to find a cure for blood cancers!

To reach our stretch goal, we need 90 teams to raise $2000 or more. Breaking it down further, teams can achieve $2000 with 8 walkers raising $250 each or 10 walkers raising $200 each. (See “10 Ways to Reach $250”.)

While this goal may sound challenging, we’ve achieved it in the last three years! As we go forward, this “formula” is the foundation for continuing to effectively raise our LTN monies and develop our team.

Basic #5: “By failing to prepare, you are preparing to fail.” (Benjamin Franklin) By setting goals and planning to succeed, we will reach our goals!

THANK YOU for being part of Friends of Heroes. Each of you has a critical role as we continue to strive for our benchmarks. Your Team Leaders are here to help! Contact us anytime at teamleaders@friendsofheroes.org Together, we can do it!

- Written by Co-Captain Jenn B.

(Originally from the July Newsletter)

“Godspeed Little Man” Video

For more about Matthew, please read the touching tribute his father shared with us.

Team Friends of Heroes had the complete pleasure of having Sean Haines share the story about his precious son, Matthew’s journey with cancer on their LTN Kick-off conference call. If you were on that call, there is no doubt that you were as touched, moved and inspired as much as I was. So you will most certainly understand why we feel the need to share this story again with those that were unable to participate in the call.

This story is so powerful we feel that its message embodies our mission so very strongly. Also with Mother’s Day and Father’s Day having just passed, not only does this message speak to us the importance of FOH’s purpose but it speaks volumes to us as parents and the importance of what these days truly mean. So in place of our “normal” affiliate team interview we would like to share with you this transcript from Sean Haines, Team Captain to affiliate Team Matthew, and more importantly Matthew’s father.

I was graciously asked to share my story with all of you tonight, the story of my son Matthew David Haines. I was truly honored to accept since sharing memories of Matthew and the incredible life lessons he taught me, is one of my greatest pleasures and blessedly helps me cope with my own grief on a very personal level.

We all recently celebrated Mother’s Day a couple weeks ago, which means Father’s Day is just around the corner. I have always treasured Father’s Day since I have always treasured being a father. But when you lose a child, it’s hard for Father’s Day to not take on a somber tone since the person who enabled you to be a Father is no longer with you physically. Last year’s Father’s Day was exceptionally difficult for me. Last year, Father’s Day fell on my son’s birthday…. Matthew would have turned 10 years old that day….but, in 2005, my son lost his battle with cancer…

Matthew courageously fought his cancer from the time he was barely four years old….He endured incredible pain and suffering through a multitude of surgeries, sickening chemotherapy and radiation. He was at death’s door on many occasions. He experienced horrors no adult, let alone a child should ever have to face. But, despite all the pain, suffering and sickness, despite all he sacrificed in order to fight his cancer, Matthew never lost the essence of who he was: the most kind, compassionate, empathetic, and loving person I have ever been blessed with knowing…

But, I have to admit….during Matthew’s five year battle with cancer, I found myself moving farther and farther away from God. Each time Matthew relapsed, I felt further abandoned. Part of my brain was furious at God for allowing this to happen to my family and allowing my son to suffer in such a horrendous way. I felt more and more isolated from Our Heavenly Father…I stopped attending church. I felt betrayed…I felt lost…I felt alone…I felt like God either didn’t care or wasn’t there…

On November 18th, 2004, after my son had been hospitalized for 40 days, the doctors informed us that Matthew’s cancer had come back once again and there was nothing more that could be done…I emember the horror I felt as I wrote the following entry within my journal:

November 18th, 2004 – Day 40:

Cancer Has Won Cancer….the destroyer of hope….the killer of dreams….
Matthew’s cancer has come back…
The only thing growing in his bone marrow are cancer cells…
We are taking our little boy home with us…
Matthew’s cancer is incurable…
He has been given a ‘life sentence’ of 2 to 8 weeks…
I’m numb with horror and grief………….
My sadness is all-encompassing………
God help my family…..
God help my family…..
God help my family…..
God help my family…..

I poured out my heart and soul to God…I so desperately needed to believe in him once again. I so desperately needed to have him back in my life. I so desperately needed to know he would take care of my little boy…

God heard my plea….But I soon came to realize he ALWAYS heard my pleas….During the remainder of Matthew’s life, my eyes were opened and I was fully able to see the beauty that is Our God…I was able to see that through all of these years, God had never abandoned us. He had not left our side for even an instant. I was able to look back and see the miracles he put in place to help us THROUGH our pain and sadness. I realized that during the times I felt alone in the past, I wasn’t alone at all. The beautiful story entitled “Footprints in the Sand” is exactly what had been happening in my life…As you remember from the story of the man’s dream: He was walking along the beach with the Lord. The man questioned why, during the lowest and most difficult times in his life, there was only one set of footprints in the sand. He wanted to know why the Lord would leave him at the times he needed him the most. The Lord replied that he NEVER left him, and that during those times of trial and suffering, when there was only one set of footprints, it was then that the Lord carried him…

I was able to witness first hand God’s powerful grace as his loving arms wrapped around my family during the latter part of Matthew’s life… God blessed Matthew and his family with nine full weeks of love, laughter and togetherness. We didn’t waste precious time thinking about death. We lov-ingly embraced every single day as a true gift from God, living each one to the fullest. The fact that Matthew outlived the ‘life sentence’ handed down to him in the hospital is an example of just one of the multitude of miracles God provided during the time my family needed each other the most…

I remember writing in my journal about God’s “direct intervention” and how it did more to ease my pain than anything else EVER could since it helped put my son’s heart at ease with his inevitable outcome: “Matthew told Debbie and me God came to him in a dream this past week. He said a man in a white cloak appeared before him in a dream. Matthew said he knew this man was God. God told him he would be ‘OK’……that he would be taken care of. Matthew felt an overwhelming feeling of comfort and love surrounding him. He holds that dream very close to his heart…..but will not talk about it to anyone except us (and that is sparingly)…….It meant the world to me to hear about this dream……it truly did….”

I also remember writing about Matthew’s Angelic visits as well: “Matthew has told us Angels have appeared before him. They appear as children to him. They are all dressed up in white with halos and wings. They also tell him he is loved and will be taken care of. He has drawn me a picture of one of the Angels, but feels he just can’t do it justice…I thought the Angel looked pretty beautiful to me…”

For the remainder of Matthew’s life, he continued to amaze us in his understanding and acceptance of what was going on. He would tell us he was being visited by angels on a regular basis and that he was not scared to die when his time came. He even told us he was kind of excited about the idea of becoming an angel. Thank you, God, for helping put his mind to rest…as well as ours.

I remember Matthew telling us he would like us to have more children…He knew how incredibly devastated we would be as a family, and how pain-fully empty the house would be without his physical presence…He knew how far the pure love, beauty and joy, which comes from the arrival of new lives, would go in helping to heal our wounds…heal our hearts…heal our souls….

Matthew requested we use two names for the children: Michael Jacob and Jennifer Michelle…

Matthew and his mother were having an emotional heartfelt talk about two weeks before he passed away…Debbie was not able to hold back her tears of grief…Matthew looked into her eyes and said for her not to be sad….that she would be blessed with a pregnancy in seven months….

How much more proof do you need that Matthew was truly privy to God’s master plan than to learn Debbie and I were blessed with a pregnancy seven months to the day Matthew passed away….and that this was a twin blessing….one boy and one girl…whom we lovingly named Michael Jacob and Jennifer Michelle…honoring Matthew’s last request…

At 11:20pm on the night of January 21st, 2005…Debbie and I lovingly held Matthew as he drew his last remaining breaths on this Earth…We told him about all of the beauty he had brought into this world during his lifetime and that he would never be forgotten… he passed very peacefully within our arms as we comforted him…cancer couldn’t hurt him anymore…

Throughout Matthew’s cancer treatments, I continually prayed for a miracle for my son. A miracle that would save him from his cancer….

I came to realize that Matthew was the miracle….and that our miracle was here all along…Matthew was sent to teach us all a very important lesson…a lesson about what pure unconditional love and pure unconditional FAITH truly is…Through the example he set by the way he lived and loved his life, he has literally saved my life.

The bond between a father and his child is one of the most special, loving and spiri-tual connections that can exist in this world…..and the next….

So the advice I would like to pass along to all Fathers for this upcoming Father’s Day is to please remember…

Father’s Day is not about getting breakfast in bed, or being allowed quiet time to watch a sporting event on TV. It’s not about the store bought cards you receive or the pretend ‘Father’s Day’ crown your kids may make for you at school. It’s not about being ‘let off’ chore duty for one weekend. It’s not about the gaudy neckties and argyle socks you may receive that somehow find their way to the back of the closet, never to be seen again. It’s not about the kids promise to ‘play nice’ with each other during your big day….

You see…it’s NOT about the store bought presents or pleasantries you RECEIVE from your children…It is about the children themselves…THEY are the presents…THEY are the gifts…from GOD.

But unfortunately…too many fathers lose sight of this or tend to take their kids for granted ….Too many fathers don’t fully appreciate what incredible blessings they have right in front of them…Too many fathers don’t see their children as the beautiful gifts they truly are…

So please….please….take some advice from a father who fully understands the absolute preciousness of time….Please cherish every single moment you are blessed to spend with your children….since you never know how long you will have to hold them in your arms…to kiss them goodnight…to tell them… “I love you”…Please don’t waste precious time which should be spent laughing and loving because you will never get that back…. Please fully realize that every single additional second you have with your children is yet another true gift from God…

So you see…The largest life lessons can be learned from the tinniest teachers…My tiny teacher was Matthew. He taught me some very key life lessons that we all can take into our hearts and lives:

Value the moments: Include yourselves fully within your children’s lives. Make the most of the time you have together. Strengthen that father/son bond. Help each other to grow stronger empathetically and spiritually…

God will never leave you: No matter what trials you face or how bleak your outlook may seem, God will ALWAYS be there to help guide you through…even if he has to carry you…and be the only footprints in the sand…

It’s not the length of the life that matters…it’s what you DO with that life: None of us know when we will be called back home to our Heav-enly Father. We need to use the beautiful gift of life God has granted us to make a positive difference in this world…to touch as many lives as we can with compassion, love and the blessing of unconditional faith…

God bless you Matthew…You have been, and will continue to always be a very important teacher in my life…

My life’s goal is to now do whatever I can to help fight cancer and help ease the lives of those suffering with this disease.

I personally started walking and raising money for Light the Night six years ago. Last year, my team joined FOH and became one of your affili-ates…In the past; I was walking in support of my son Matthew and his fight for life. Now, since his passing, I walk in honor of my little man as well as all the precious angels that are currently fighting their cancer, or who have joined my sweet son in Heaven…

We all desperately need to keep up the fight…we desperately need to continue raising funds to sponsor cancer research. Medical research HAS come a tremendously long way toward finding a cure for pediatric cancer. Blessedly gone are the days when being diagnosed with cancer, in essence, meant an automatic death sentence for your child. Through all of the funding that has flowed in to expand upon and support on-going cancer research, whether it be via corporate grants or hard-earned public donations from the heart, the survival rates have dramatically in-creased for all pediatric cancers. The chance of your child outliving their cancer is becoming the dominant percentage, while the possibility of losing your child to this disease is slowly becoming more the exception than the norm…

But…when you are the parent of a child who has lost his life to cancer…when you are the parent who has watched incurable cancer ravage your child…when you are the parent who has tenderly held your child while they slowly died in your arms…along with all your hopes and dreams…dashed amongst the jagged rocks of overwhelming grief…all the pediatric research success is still…not…nearly enough. Not enough to stop the gut-wrenching pain…not enough to dry the heart-rending tears…not enough to fill the empty, gaping hole in your soul…not enough to bring your beautiful child back into your yearning, loving arms…to have and to hold once again…

Until every parent doesn’t ever have to experience the absolute worst pain imaginable…Until every single precious, innocent child can be saved from his or her cancer…

Research MUST continue to be funded…
Research MUST continue to progress…
Research MUST…NEVER…STOP…until a cure is found for every pediatric cancer…
…A parent should never have to bury their child…

The Friends of Hero’s organization, in coordination with Light the Night, has done amazing life saving work thus far. The money all of you have raised has helped bring a cure that much closer to reality. I encour-age…I PLEAD for all of you to please keep it up! Strive to do more every year…increase those goals, raise that bar, extend your abilities…Do whatever it takes to fund cancer research…We must all work together to help save these precious lives…

For all the hard but beautiful work you do, I thank you…the children and their families fighting this disease thank you…and my beautiful little Matthew thanks you…

And thank you all for letting me share with you…

Take care everyone…and God Bless….

Sean Haines

http://matthewhaines.info
Matthew’s Video Tribute

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

Two years ago, the life and death of beautiful, 8-month-old Allison Leigh Scott brought us together. It was easy to fall in love with Allie’s soulful blue eyes and sweet dimpled smile. Compassion compelled us as readers of Jenny Scott’s journal to form “Allie’s Angels”, a national Light The Night team, to show our support of the Scotts and their family and to honor Allie’s courageous battle with AML leukemia.

Today, Friends of Allie continues to support and honor young patients stricken with blood cancers by raising money and awareness and by reaching out to these families. We remember Allie and the Scotts this month as we endeavor to find a cure.

Thank you, Jenny and Andrew, for openly sharing your lives and your girls with us. Allie will always have a piece of our hearts.

Friends of Allie is proud to have the likes of Desiree Nichols in our presence. The fundraising and work she does to raise awareness is an inspiration to our Light The Night team.

Her daughter, Sammy, is one of the very special reasons why Friends of Allie has adopted the tagline “Putting a Face on Childhood Cancer.” Her cute mug can be seen in our collage featuring the 2005 Honored Heroes.

During our August team conference call, listeners had the privilege of hearing Desiree, a busy mom of three, share her family’s journey while dealing with Sammy’s blood cancer.

Here is an excerpt of Sammy’s story and ways to raise awareness and funds:

On March 8th, 2004 my then 2 yr old daughter was diagnosed with acute lymphoblastic leukemia. At that moment my world came crashing down.

Over the past two years, Sammy has endured countless procedures, tons of medication, and actually doing wonderfully! We should be off of treatment this winter if all goes well!

I dedicated my life to being a “better” mother. Spending as much quality time as possible with my children. Taking in each moment, and each conversation, even when it drives me nuts bcause they are talking about something off the wall. LOL And to raise awareness and funds till the day I die.

To date I have raised over $13,000 for LLS. Have had two blood drives, and even had countless people get on the bone marrow registry. And most of it I have done by myself. Coming from a family that has been directly effected by cancer…. you would think I would have family members ready and willing to assist in each fundraiser, blood drive, etc. But no……..

I thank each and every member from FOA, and your family and friends you recruit to walk on your LLS LTN teams from the bottom of my heart. Each member here should be proud of themselves for stepping up to the plate, and giving back even when this awful disease has not effected your child personally. Each dollar you raise, each pamphlet you hand out, each person you tell Allie’s story to, as well as all the other childhood cancer victims stories too get’s us one step closer to a cure. Raising as little as $10, or high as $20,000+, each amount matters. It shows you care, and you’re making a difference.

I am honored to be apart of such dedicated, caring women. Who take charge, and have a goal in life! Together we will…. make our million dollar mark this year.

Just tell everyone you come in contact with. Have packets in hand to pass out. Chat with the parent’s at T-ball, ballet, or any other sport your child attends. Make cupcakes, or cookies and send to work with your hubby (selling them for a donation to LLS). Contact your local Chamber of Commerce and ask about upcoming events. Set tables up everywhere. You would be surprised at how many people are willing to give you a spot for free. Get the stroller out and walk around town. When you put a company on the spot face to face, it is harder for them to say NO. You will come to find out a lot of people are affected by some form of leukemia or lymphoma. And I can not stress the fact of getting your letters out. Last year, I pulled in a good $10,000 from just letters. I got out my phone book and sent one to each company. Not everyone will respond. But a lot will.

If anyone needs help with fundraising, ideas, or just encouragement, please do not hesitate to email me. I am here for you.

Hugs, Desiree

To support Desiree and Sammy in their fundraising, please visit
http://www.active.com/donate/ltnRichmo/SammyNichols

And, don’t forget to leave a guestbook message for the sweet princess herself!
www.caringbridge.org/va/princesssammy