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Affiliate Team Courtney’s Angels

November 21st, 2007 | 1 Comment | Posted in Affiliates, Personal Stories

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”.

th_pbwhite1.jpgCan 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

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

October 17th, 2007 | No Comments | Posted in Affiliates, Personal Stories

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

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Team Matthew: A Father’s Love

July 6th, 2007 | No Comments | Posted in Affiliates, Newsletter Articles, Personal Stories, Team Tidbits

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

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