Archive for March, 2008

Never Tapped Out

Sunday, March 30th, 2008

           I am amazed at my daughter. The more I think about her the more I am amazed at the way she fought her battle. She fought with incredible courage and fortitude.
           In the brutality of the fight I liken Boey to an Ultimate Fighter. You know the guy that choose to be in a ring with another man trying to kick, punch, slam and force their opponent into submission. This is the nature of fighting. These guys train by fighting and wrestling for hours, running miles, slamming  their bodies and learning to slam others. This is how they gain strength to fight their battles. But how did my Daughter train for the fight that she was in? In a sense I was her trainer. I was her trainer and her mother and brothers were other trainers.
           A  fighter learns to kick and box and the skills of grappling. These are the skills that carry the fighter in the ring. My daughter learned how to relax and know that she is loved. These were the skills that she needed in her fight. The hospital stay for chemo including the stomach pain, vomiting, nausea and diarrhea were much longer than the 3 minute rounds of an ultimate fight. For her second bout with cancer they were for 5 days at a time! If the going gets tough in an Ultimate fight, and they can get brutal, the fighter can tap the mat to prevent a broken arm or to stop from passing out due to being strangled. Boey did not have the assurance that she could tap out if she felt she couldn’t take the pain anymore. No “tapping out” for her. Once she set foot in the hospital she was committed.  She needed to wait for 5 days for the suffering to end. I never remember her leaving her “warrior mode” once she entered it. She was fierce but she had a sense of peace at the same time.
          Her assurance was her mom and her dad at her side every moment. We were there praying, cheering her on and assuring her that it would be ok and loving her deeply from the heart. She would go into her fight mode where she would rarely talk and only answer yes or no or ask for what she wanted. She knew we were there to take care of her physical needs and she spent her energy to calm herself and be at peace. This was her battle ground and she was good at the fight and she never gave up.
           The nature of a fight in the ring is different than a fight in the hospital. The very nature of a ring fight breeds aggression and anger. If properly controlled this aggression can provide  an edge over your opponent. The adrenaline fuels the strength needed for the goal. Boey knew how to find her edge. She was very skillful at calming herself and closing down her focus on her outward suffering to find her peaceful center.  It was a center where GOD spoke to her and whose foundation was birthed and fueled by our love. 
           Boey found strength in GOD, found in her own spirit, strengthened by our love for her. It was this strength that we all enjoyed and I am learning more about now as God speaks to me to strengthen and encourage me now as I am in the “fight of my life.”  I wrote this blog 2 months ago and as I read it right now it is reinforcing what I sense God speaking to me. Boey was remarkable because she fought by calming herself and centering herself in GOD. This is what I have been learning to do because I have no real strength in myself anymore. I long for the strength I have found in GOD. I want more of what Boey had; the ability to calm and find center in GOD. Having this strength will insure that I will never tap out.
Love to all, ROB

Here is Decypher Down performing “fight like this” BO once rocked out with me to these guys in Medford!

Suffering and the favor of GOD. Oh and happy Easter.

Sunday, March 23rd, 2008

            

           Since it is Easter week my family watched the movie “The Passion” ,Mel Gibson’s version of the passion of Jesus Christ.  Boey loved this movie and she cried when she watched it. I cried last night when I watched what  Jesus chose to endure to bring salvation to man, but  my attention was drawn to Mary, the mother of Jesus and what she had to endure. 

           When the angel Gabriel came to Mary to announce to her that she was to bring forth a son he said, “Rejoice, highly favored one, the Lord is with you; blessed are you among women!” You would imagine being highly favored of the Lord would be such a good thing and I know that it is. I also know that it does not always mean that you are insulated from anything. 

           From the very beginning of this favor Mary experienced very real emotional pain and turmoil. Imagine being a devout Jew and having to tell your fiancé that you are pregnant. Can you imagine that conversation? Can you imagine the frustration and pain in Joseph’s eyes. Joseph did not even believe her until an angel came to him to confirm this outlandish story. So right from the beginning this favor had an unusual effect. Gods favor did not mean peace or calm in Mary’s life, it actually brought conflict and discomfort.

            Fast forward 33 years to the day of Jesus trial and crucifixion. Mary was forced to endure the beating and flogging and killing of her son whom she loved. When I watched the movie it activated that emotion in me that I have been familiar with during the last 2 years. Seeing Mary unable to help her son while he was enduring his suffering reminded me of trying to comfort and be there for Boey but unable to take the suffering away. I know that Rachel excruciatingly feels this emotion every day. Having the favor of God does not prevent us from watching those whom we love suffer great pain.

            It is not my intention to compare Boey to Jesus. Boey was an extraordinary girl who loved her King Jesus. Our family experienced the favor of God for the 8 years that she was with us. We experienced more love, joy, laughter, triumph, and good fortune than anyone I can think of. This was the enjoyable part of Gods favor. 

           But we were not shielded from the anguish of sickness or death.  I don’t for one second believe that sickness or death are from God. I believe they are part of what the enemy has brought to this world  and that Jesus came to destroy the works of the devil. So what happened? I don’t know but I ask God every day. I know that Boey has been part of this destroying the devil’s work. She truly showed by example how to combat cancer as her faith and love for God was unwavering in the midst of pain. It is my prayer that others will adopt her fighting spirit and not allow cancer to win. I can sense the favor of God in my spirit even while my soul cries out that I have been forsaken.

            I do know beyond a shadow of a doubt that my daughter experienced the favor of God while on this earth and is experiencing it beyond measure now in Paradise. I know her life-song was sung with passion and conviction and that many people were drawn to her because of this.  Perhaps she will draw people to the life force she relied upon. This is my prayer. We enjoyed her song’s beautiful melody above all others. We also believe the melody is reverberating throughout the atmosphere of this world and it is drawing people to her Jesus. Drawing people to where she is right now.

             It is our prayer that this Easter you will take a moment and think of Jesus, whom Boey loved and loves and consider what her song means to you.         

Have you written your letter to Oregon(R) Sen.Smith?

Sunday, March 9th, 2008

Please write your letters!! He’s our very own senator and he’s not signed on to a bill that could save our children’s lives with funding for research for a cure!!!   

So, now there are 53 sponsors (another signed on yesterday) - need 7 more to negate the hold on the bill.  OUR VERYOWN SENATOR SMITH HAS NOT SIGNED ON TO THIS BILL. BOEY NEEDS YOU TO CONTACT HIS OFFICE AT - 503-326-3386.  YOU CAN ALSO WRITE HIM LETTERS AT Senator Gordon Smith, 121 SW Salmon St, Suite 1250, Portland, OR 97204) or emails (thru his website, gsmith.senate.gov/webform.htm):

SUGGESTED TEXT FOR A LETTER TO SEN SMITH:

“ I’m encouraging Sen. Smith to cosponsor S.911, Conquer Childhood Cancer Act.  One of his own constituents, 8 year old Boey Byers of Corvallis, was, and continues to be through her memory and family and friends, an amazing advocate for the kids in this country suffering from cancer.  She fought valiantly to bring to the attention of Congress and the country that there’s a pressing and immediate need for more pediatric cancer research.  She did this even as she couragously fought for her own life for two years.  Through two years of chemo and radiation treatments, brutal pain and sickness - she never gave up!  I ask you to honor Boey’s memory and legacy by cosponsoring S.911 - no child (nor should their families) EVER have to suffer the horrors of cancer.  I commend Sen. Wyden’s cosponsorship of the bill, and ask Sen. Smith to consider supporting this important legislation.”

Respectfully, (your name)

Thankyou to curesearch for their update on the bill and honoring Boey, Ben and all the amazing warriors. Please contact cure search at  http://curesearchnccf.blogspot.com/ and http://www.curesearch.com/ to find out ways you can help our children. Cure Search is an awesome national organization dedicated to finding a cure to childhood cancer.

Below is from the Cure Search blog

Childhood Cancer Discussed on the Senate Floor

On Monday, February 25th, Senator Jack Reed (D-RI) and Senator Ron Wyden (D-OR) gave a colloquy on the Senate floor about childhood cancer. Specifically mentioned were Ben Haight from Rhode Island and Jenessa “Boey” Byers from Oregon, both of whom have passed away from childhood cancer. Their families continue to be champions for childhood cancer research funding.

Cancer in children is more common that most people realize. Childhood cancers behave very differently than adult cancers and the survival statistics are not as promising. Furthermore, the incidence of childhood cancer seems to be increasing. -Cancer is the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents.
-One in 330 children will develop cancer before the age of 20.
-On average, 46 children are diagnosed with cancer every day in the United States.
-Approximately 12,400 children were diagnosed with cancer in the year 2000.
-Each year, about 3,000 children die from cancer - more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.
-Only about 20% of adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80% of children are diagnosed with advanced disease.
-In the past 20 years only one new cancer drug has been approved for pediatric use.
-Only 3 % of the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That’s 3 % for ALL kinds of Pediatric Cancers combined!)
-The incidence of childhood cancer is increasing. The cause of this is unknown.
-Pediatric cancer funding is nominal in comparison to other more publicized diseases such as pediatric AIDS or juvenile diabetes which increases awareness each year.
-Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and exposure to cancer-causing agents. The cause of most childhood cancers in unknown.
-Approximately 70% of children with cancer participate in research trials compared to only 3% of adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research.
-The government recently CUT the budget for Childhood Cancer research.
-As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year.
-The symbol for childhood cancer is the gold ribbon

Boey’s dreams becoming a reality:-)

Thursday, March 6th, 2008

 Although the grief and pain  seems to get worse every day and our broken shattered hearts are aching, we want to share some very exciting and encouraging news about carrying on beautiful Boey’s legacy and radiant spirit. Although it’s difficult, we are trying so hard to not focus on the stress we have and take it one day at a time.

     If our beautiful and brave girl could sing praises her to King and proclaim “I love God” while enduring the horrible pain of a broken hip and brain tumor from this devastating disease…we can over come anything this temporary world throws at us.

     With the help of team Jesus and Boey orchestrating from above, we are in the developing stages of creating BOEY BEARS and the BELIEVE FOR BOEY foundation. Nothing brings our family more happiness than watching our baby girls dreams come true right before our eyes. Although the pain is unbearable, this does bring some healing to our family because it was one of Boey’s biggest dreams. This charity is going to be phenomenal. There have already been many divine encounters, appts, connections with certain people that can only be explained from coming from above:). We want to thank everyone involved with the Boey Street Teams and Jeff Palombo for making our precious Boey’s dreams a reality and keeping her extraordinary loving joyful spirit alive. 

      I have to share a very heartwarming wonderful little story so you understand how much this means to Boey and our family. Around November of last year me and my beautiful Boey were at one of her favorite restaurants discussing her dreams of how many ways Boey Bears can help find a cure and help other families going through the nightmare of a cancer diagnosis. Boey lived for helping her little friends and if the hospital would’ve let her she would’ve been there everyday offering her Boey Tude encouragement and spunky never give up attitude passing out bears, cards and balloons.

      Boey was radiant that day in the restaurant. She was sparkling and sooo happy that she was finally feeling good enough to be a part of making her dreams become a reality. Her big beautiful brown eyes spoke volumes about how excited she was to get started on Boey Bears and what she wanted from this charity that meant everything to her. I watched in awe as she began to write down her visions, goals and dreams on a notebook..she was the most adorable little CEO you’ve ever seen LOL.

     What a glorious and joyful day that was. With that being said, we are now getting ready to launch Boey Bears a wonderful amazing charity that will involve Build A Bear (Boey’s favorite place) Our dream is that it will provide funding for a cure for pediatric cancer, assistance for children and families living with cancer, and maybe even building retreats for families so they can escape the nightmare cancer world and enjoy time together as a family. I remember when Boey said to me “mommy, it’s really important that all my little friends are spoiled with love like I am cause that’s what gets me through the horrible chemo”.

        Boey’s heart was so pure and that’s exactly what our organizations will stand on ..perfect agape heavenly love. Boey was a beautiful vessel of God’s love and her amazing story will forever impact lives. We are honored and blessed to carry on our baby girls amazing inspiring beautiful legacy. We will updating throughout the next 6 weeks to let you know how close we are to the official launch date of Boey Bears. Our goal for the official lauch date is May 20th, Boey’s Bday…what a beautiful tribute to Boey on her bday:). 

     Pray for God’s wisdom and guidance in the weeks ahead. Pray for God’s love and healing power to invade our hearts and souls…the grief literally takes on a life of it’s own and it becomes unbearable. In honor of Boey and her friends please continue to contact any senators that are not signed on to the Conquer Childhood Cancer Act Bill. Please refer to the post below regarding all the information on the bill and the ways you can help to ensure this bill is signed into law and this evil disease is kicked to the curb FOREVER!!

A very special sincere heartfelt thankyou to everyone that is reaching out to our family. Boey is so proud of everyone uniting together to help her family make her biggest dreams in life a reality. God Bless

KEZI STORY

Wednesday, March 5th, 2008

 We just watched the local news and found that we were on it! It was a story about how things are very difficult for us.
The flavor of the newscast was that we need help because of our increased expenditures and how we are struggling.This is true and
we are trying our best to overcome all that have been dealt to us.

We are a little embarrassed because we have recieved so much love and support and are still struggling.
I wanted to thank them for caring about our family but we want to clarify: we have not asked for help. We do appreciate it and probably really need it but we have not spoken to any news about this because we dont want to be misunderstood. We have recieved so much. We appreciate it so much. We are blessed and loved and everyone should be very proud of that.

I guarantee one day we will pay it forward to help other families, our life has been changed forever; but for now we are just surviving.