Hiking to Help

a message from a little brother

Hello friends.

My big brother, Zack, died of liver cancer on May 28, 2011. He was only 12 and I was almost 7. Childhood cancer is a terrible disease and affects too many kids like my brother. Childhood cancer isn’t something that happens just to the kid with the diagnosis, it happens to the whole family. I spent most of a year in a hospital room and in the Ronald McDonald house with Zack and my parents. Sometimes it was hard but I was happy we could all be together.

My parents friend, Mike Owen, has been hiking in Zack’s memory since he died. We decided to join him this year to raise money to help cure cancer for kids.

I am participating in a true ultimate challenge – hiking to raise funds for children’s cancer. The money I raise will support CureSearch for Children’s Cancer, a national non-profit foundation whose mission is to fund and support targeted and innovative children’s cancer research, with measurable results.

We chose this hike for a couple of reasons. Since it is a 12 mile hike, we thought it would be great to hike a mile for every year Zack lived on this earth. Also, this hike is held the weekend of Zack’s 19th birthday so we thought this would be a great way to celebrate his birthday.

Additionally, they are a great source of information and resources about children’s cancer for families. With your help, I can exceed our family fundraising goal of $2,500! Please, donate and make a difference in the lives of the 43 children diagnosed with cancer each day. Click here to donate now:  http://www.curesearchevents.org/goto/mayofamily

Five of the 43 children diagnosed every day do not survive. Please, support me (and my family) as I help change the odds for those children most at risk.  No kid should have to watch their brother or sister die. Any amount you donate is greatly appreciated!

Thank you for helping me work tell children’s cancer to take a hike!

Nick Mayo (age 13)

Nick and Sam

Nick and 2 year old Sam always remember a big brother…

I Poisoned My Child

And I haven’t been arrested yet.

A big brother with liver cancer gets a sweet hug from a little brother.

If you don’t live in North Carolina, you may not have heard about our Cape Fear River water supply crisis. Apparently, the chemical that replaced C8 (used for Teflon) was replaced by a chemical called Genx. This chemical has been pouring into our drinking supply for years. DHHS says rates of liver cancer were up in our area during the time that our 11 year old son, Zack, was diagnosed.

And sure – lawsuits will be filed and there will be years of litigation and money will eventually be trickled out to people impacted but really? Money? Blah blah blah!
Criminal charges should be brought against anyone who knew this and didn’t make the public aware. Dumping it in the Cape Fear River for years – knowing it is the water supply for towns downstream…..I cannot begin to wrap my head around it! If I fed my kids poison, I would be arrested. But it’s ok for for a company with a permit to release unregulated chemicals ( chemical that they know cause a variety of health issues and death) into water supplies so I can unknowingly feed that poison to my kids? 
The thought of me giving my children poisoned water makes me sick. I remember insisting he drink water instead of soda because it was better for him. I remember encouraging him to swim in our city water supplied in ground pool because exercise was good for him. I remember making him bathe daily because he was dirty from doing little boy things.  I remember watching him die. He was only 12. He died from liver cancer….liver cancer likely caused from this?

What
??

His life mattered

.
How can this continue to happen all over this great nation? Water supplies contaminated and poisoned (knowingly) by US companies! When I google it – I am dumbfounded that it is happening again and again. Our water is being poisoned by US companies – not by hate filled terrorists – these are US companies! How is it that we are not more outraged? Our communities, our children, our pregnant mommas and future generations are counting on us to stand up for them. 

If we don’t insist on better, it will never get better.

It’s time to fight!

Zack smiled as I fed him poisoned water.

Don’t Feel Sorry for Me

I don't need your pity - I need your love.

DSC_5504My heart quickens when I meet a new person because I know the inevitable question is coming. These days I am usually holding or holding onto our littlest who is now approaching 2 years old when I meet someone new. His presence spurs on the question “Is he your only one” or “how many kids do you have?”

Samuel

Samuel

My answer is always proud and straightforward. ” I have 2 boys here and a 12-year-old son in heaven. ” I don’t add unnecessary details unless they ask. Some do. Some don’t.  But, I have come to dread the looks of pity and awkward discomfort that follow my response.  Watching them avoid eye-contact and squirm and fidget….I almost feel sorry for them.

Almost.

I don’t want them to feel sorry for me.

When we feel sorry for someone, it doesn’t help them.  We have to push past our own feelings of fear uncomfortableness in order to connect with someone… this is almost always easier said than done.

Because everyone is going through something and we can be a blessing when we exchange that “feeling sorry for” energy to “doing something for energy.”

If you meet someone who tells you about a child who died (and yes it is ok to say they died – they are not going to fall crumbling to the ground) , please at least take a minute to acknowledge their loss.

  1. Exchange your awkward smile for truth.  For those who are speechless, I have some suggestions… “I have no idea how to respond but what you are going through/have been through is horrible.” “I can’t even begin to imagine how you must feel.”  Let the person know you acknowledge their pain and aren’t just showing them “pity.” I despise the looks of pity.

 

  1. Ask a question. “What do you miss most about your son?”  “What was your daughter like?” “What makes you smile the most when you think of him?” When you allow a grieving parent to share even a tiny bit about their child, you are giving them an unbelievable gift.

 

  1. Whatever you do – RESIST your urge to runaway. Don’t cut the conversation short or switch it immediately to a different subject or runaway in fear that you might “catch something”.  If you are feeling awkward and uncomfortable, suck it up!  When you ask someone a personal question, be prepared to follow through – otherwise keep quiet or stick to “safe” topics. Safe topics are things like “it sure is hot outside” or “these apples are too ripe.”

 

 

  1. God calls us to love each other. People are going through all kinds of stuff – divorce, sickness, financial difficulties, loss of a loved one, (insert whatever you’re going through right now because we’re all going through something however big or small if may seem).  When we put ourselves out there and ask a question – we had better be prepared to respond with love when we get a “real life” answer.

  1. Pray for God to use you to see beyond ourselves and lift someone up today.

“We rise by lifting others.”  – Robert Ingersoll

It doesn’t take very much effort to lift someone up and don’t worry – it won’t cost you much…just a piece of your heart if you do it right.

Words.  Simple, heartfelt words. The right ones can make a difference.

Can we all strive to be difference-makers?

“I don’t want to end up having simply visited this world.” – Mary Oliver

September is Childhood Cancer Awareness Month. Be a difference for a family who is facing this journey.  It can be a lonely journey. Let them know they are not alone.

Be blessed and be a blessing as we live and love a day and a moment at a time without our son, Zack.

zackattackbrothers1

The Empty Chair

Holiday Grief

Grief is so unpredictable.

Emptying a dishwasher, it crashes over me like an ocean wave.

Friends celebrate kids home from college, school being out and loved ones being together and all I can think about is the empty chair that will be at our table.

I have so much to be thankful for but I am deeply sad for what is missing. I miss our son. I miss his smile. I miss his voice and his silly jokes. I miss him picking at the turkey before it was time to eat. (Sigh)…

The empty chair waits for all of us who grieve. Thinking about sitting at the table of thankfulness without them is almost unbearable.

Please remember those who grieve as you celebrate with your healthy and living children.

And don’t forget to say Zack’s name to me. Please. Don’t be afraid to say it. I need to hear it. Because he is not forgotten.

And be gentle with all who are grieving this holiday season because the missing doesn’t go away.

The empty chair is there.

Be blessed.

dr nickboys pumpkin

Gun Control, Childhood Cancer and Voices

Zack Mayo September 17, 1998 - May 28, 2011Cause of death - liver cancer

Zack Mayo September 17, 1998 – May 28, 2011
Cause of death – liver cancer

How many children have to die?

I listened to a clip that featured Gabby Gilfords testimony in hearings on Capitol Hill last week.
“Too many children are dying. Too many children,”she said.

YES!! Too many children are dying!!nick stand

“We must do something,” she said, “It will be hard but the time it now. You must act. Be bold. Be courageous. Americans are counting on you.”

And my stomach ached.

Because the passion she and others are displaying for children is only for children who die from a killer with a gun.
There is a heated debate among our politicians for and against gun control. All of our media outlets are covering these highly charged debates.

And I love living in a country where we can express our passions and get things done using that passion as fuel.

But I can’t help but ask “Where is the passion for the 7 children who die every single day from childhood cancer?” Those numbers don’t seem to matter – we rarely – if ever – hear about it on the national news.

But these numbers matter to me and the other parents who lose their children to cancer.

Where is the passion for stopping the killer who murdered our 12 year old son and 6 other children on May 28, 2011? Where is the passion for stopping the killer who is still on the loose taking 7 children and rolling the dice on 46 more every single day?

These numbers are shocking to me.

In 3 days, more children die from cancer than were killed in the recent horrific school shooting.

“Children are the world’s most valuable resource and its best hope for the future” – JFK

Kayne Warters  dob July 6 2008.  Currently fighting Metastatic Angiosarcoma.  If you research this cancer, you will see that the prognosis is poor. His twin brother, Ashton, is being monitored for lesions present in his liver.

Kayne Warters dob July 6 2008. Currently fighting Metastatic Angiosarcoma. If you research this cancer, you will see that the prognosis is poor and options for treatment are very limited. His twin brother, Ashton, is being monitored for lesions present in his liver.

And people, rightfully so, are outraged at the killer at the school – the gunman – and want to do something – anything – to prevent it happening again.

But are we numb to childhood cancer?
Have we just become accepting of it?
Are these children any less important than children who are gunned down?
Don’t they deserve a voice?
Why are we not demanding more for them?

Why?

Are we all willing to continue to gamble that it won’t happen to our children?

Don’t all of our children count?

Our sweet friend Kyle Williams left this world shortly before our own Zack. He died of neuroblastoma

Our sweet friend Kyle Williams left this world shortly before our own Zack. He died of neuroblastoma

Don’t children with cancer deserve a full fledge commitment to a “War on Childhood Cancer”?

Fact: The incidence of invasive pediatric cancers is up 29% in the past 20 years.
Fact: In 20 years the FDA has initially approved only two drugs for any childhood cancer – 1/2 of all chemotherapies used for children’s cancers are over 25 years old
Fact: On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
Fact: Despite these facts, childhood cancer research is vastly and consistently underfunded.
Fact: Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers.
Fact: NCI (our tax dollars) spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

Fact: Childhood cancer is ugly.
Fact: There is no known cause for childhood cancer. This means EVERY child is at risk!! Even yours.

And if we believe the evening news, then we know that children being killed by guns can be prevented if we ban this or that. And people are willing to spend money – whatever it takes – to prevent such killings.

Meanwhile, the lack of available successful treatments for children with cancer is beyond outrageous.

Our son Zack, at age 11, was given smaller doses of adult treatment because not enough children get liver cancer to deserve treatment specifically designed for a child’s growing body.

Side effects of the available treatment are horrible. Children get to spend their days and nights attached to an IV pole and suffer nausea, vomiting, constipation, diarrhea, headaches, muscle and stomach pains. Children with cancer suffer from swelling, peeling blisters on their skin and sores in their mouth and throat. Children with cancer eat through a feeding tube. Older children with cancer are reduced to wearing diapers again as they lose control of their bodily functions. Children with cancer watch as their families struggle to balance jobs, finances and the daily demands of caring for a child with cancer.
They become sterile from their treatment, they go deaf, they go blind, they have brain damage, they have heart damage, they have speech problems – the list goes on and on…

Fact: Children with cancer want to live.
Fact: Children with cancer deserve a chance.

How many children have to die from cancer before we consider it too many?
And does it only become too many when it is your child?
And you may ignore this blog post and go on about your “normal” life with your healthy children and you may only stop and think you need to take some sort of action when it becomes your child.

Or you can help by contacting your political representatives and tell them that ALL children count and demand more funding for pediatric cancer research. You can contact your representatives with the following links: http://www.senate.gov/general/contact_information/senators_cfm.cfm
http://www.house.gov/representatives/find/
http://www.whitehouse.gov/contact
You can also help by making a donation to organizations that support research for childhood cancer. Organizations like St Baldwicks, http://www.stbaldricks.org/filling-the-funding-gap
Alex’s Lemonade Stand http://www.alexslemonade.org/ both focus on childhood research.

I will be a voice.

I will be a voice for those who cannot speak.

I will be a voice for Zack.

I will be a voice for your child and mine.

Because one person can make a difference and every person should try….

And if it makes a difference for just one, then that will be all the difference in the world.

Because don’t all of our children matter?

I have never posted this picture before because it is so personal. This is the last picture taken of our precious Zack only hours before he would leave us.  But this picture matters so much. Our children should not have to suffer and die from cancer.

I have never posted this picture before because it is so personal. This is the last picture taken of our precious Zack only hours before he would leave us. You can see his jaundice was severe(as his liver quit functioning), he was weak and his belly was so swollen… But this picture represents so much…How many more have to die before you do something? None of our children should not have to suffer and die from cancer.

Half-Empty Bottle of Scope

scope

Cleaning up Nick and Zack’s bathroom, I see the half-empty bottle of Scope tucked in the back of the cabinet.

And it tears open my still healing wound.

I pull it from the cabinet and stare.

But I cannot bring myself to throw it away.

And I wonder how strange that is.

I remember Zack asking me to buy it for him – Spring of 5th grade (2010). And I remember thinking he must be starting to get interested in girls.

That cherished memory makes me smile at first but then it makes me cry.

Because that bottle of scope is so much more than just blue/green breath-freshening liquid…

It is the young man our son was just starting to become and a future that would be robbed. A future of voice changes, shaving, wearing deodorant without being reminded, a first kiss, holding a girls hand, a first date, first dance, the prom, first love, marriage, family….

And so I sit on a bathroom floor and smile and cry.

In a bathroom where toothpaste still gets left in the sink, on the counter and sometimes even on the floor and repeat showers still take place after I discover a dry bar of soap. Where a toilet seat is still left up and clothes are still scattered across the floor instead of in the hamper. And while I still offer gentle reminders, I don’t complain about it.

Instead, I give thanks in a bathroom for the simple reminders of life.

May we all count it all JOY a Moment at a Time…

scope1

Little things – will you be the gift this Christmas?

“What is desirable in a man is kindness.” ~ Proverbs 19:22

Messages of encouragement on a facebook wall and a caringbridge site…

A pot of coffee already freshly brewed in the parent lounge after a long night in a children’s hospital…

A smile from a stranger in an elevator…

A fellow childhood cancer parent taking time to stop and ask about my sick child and my healthy one…

Cookies baked at the Ronald McDonald House…

Cards and gifts arriving in a hospital room daily…

you made a difference in his days...

you made a difference in his days…

Little things…

All lifted spirits in our darkest days.

All still remembered.

Is it the little things that make the difficult things more bearable?

Random acts of kindness really do make a difference.

“Kindness is a language which the deaf can hear and the blind can see.” ~Mark Twain

And when we look at someone, can we really see?

Or are we so consumed with self that we only see what we want to see?

Or is it just too painful so we simply look away?

Emptiness, loneliness, and overwhelming hurt can be easily hidden with an outward smile.

We never know what people are going through.

Not really.

And we never know how much of an impact a simple random act of kindness can make on a life.kindness

A smile.

Letting someone go ahead of you in line.

Paying for someone else’s coffee in the drive-thru.

Passing along a great book.

Helping someone load packages in a car.

Holding the door.

Taking in a neighbor’s trashcan from the curb.

A Christmas card with a real note in it.

A phone call.

A word of encouragement in a card, message or email…

Little things

Last year a group of Zack’s friends and their families got together in December and agreed to look for opportunities to perform “random acts of kindness”.

Carefully written and thoughtful notes about Zack memories and their “random acts of kindness” delivered to us in a wrapped box.gift

And we read each one.

And in the midst of our missing, our spirits were lifted.

Little things — will you be the gift this Christmas?

We encourage you this Christmas season to make a point to perform random acts of kindness in honor of our Zack and all the other children who have lost their battle with cancer and all the ones who continue to fight. And we would love to hear about your random acts of kindness so please share them with us as we honor and miss Zack and find the joy in the moments of every day.

Random ride through the neighborhood with friends...Zack on his special bike and Nick giving a little push.

Random ride through the neighborhood with friends…Zack on his special bike and Nick giving a little push.

family4

Random visit from a very special friend…

 

A Headstone Delivered…

The sun shines brightly against the blue sky.  Puffy white clouds.

My throat tightens. I whisper a prayer for help.

You will keep him in perfect peace, Whose mind is stayed on You, Because he trusts in You. ~ Isaiah 26:3

Where is my mind today?

I step out of the truck and my heart spills on the ground.

The ground where my son’s body rests.

Everything is alive with Spring. The grass so vividly green. Flowers bloom. Birds sing. Life is all around me. But death looks me straight in the eyes. Death of my first born. My Zack. Our son. It pierces my soul.

Grace. Amazing Grace. Grace greater than my sins. HIS grace enables me, enables us, to make it no matter what…

And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness.~ 2 Corinthians 12:9

I walk through the cemetery.

A headstone delivered.

A headstone for our son’s grave. Our 12 year old son’s grave.

A headstone placed carefully at his burial site. A place I do not visit often.

We put if off for so long. “You need to get one” – my momma would gently encourage.

A headstone finally ordered. What words are sufficient? To tell of a life lived. To tell of a life loved. To tell of all that is missed. Impossible.

A headstone finally delivered.

Back of his headstone. Dirt bike racer Zack Mayo Number 25

I run my fingers carefully over the letters of his name. I breathe. The sun warms the cold stone.

I notice grass has started growing over the sandy dirt on his grave.

A grandmother. My mother, “Ebie” to my boys, tenderly cares for his resting place near her home. Flowers lovingly switched out regularly. A new vase waits to dry so she can add more flowers.

The 2+ hour drive back to Wilmington, back to our 7 year old Nick, is quiet.

My husband’s hand in mine requires no words.

And this morning, the sun still came up. A new day.

And today people will complain.

About nothing.

About something.

About everything.

Instead of being thankful…
“I had no shoes and complained, until I met a man who had no feet.”  ~Indian Proverb

Parents will complain about their children.

Instead of being thankful…

And while they complain, today forty-six parents will learn their child has cancer.

And seven parents will kiss their cancer stricken child for the last time. Hold their hand and smell them for the last time. Look into their eyes for the last time. Listen to them breathe. Watch them struggle to live. And watch them leave this world.

And the way they look at this world and the people in it will be forever changed.

And they will wonder why anyone complains…

Instead of complaining that the rosebush is full of thorns, be happy that the thorn bush has roses.  ~German Proverb

Sidenote: Seeing a headstone, my son’s headstone, may make you uncomfortable. I am quite certain that I will get at least one message asking how could I post it? No messages surprise me anymore.  There will be others who won’t message me about it, they will just talk with their neighbor about it.(gossip?) That’s just a part of life. Headstones are also very much a part of life. Death is very much a part of life. You can push it out of your mind. You can ignore it but for sure it will still come. For you. And for your children. The ultimate question for you is what will you do for the eternal glory of God, not yourself, that will make your life count when it comes time for your headstone? Will HE be pleased with your words, your actions? Are they reflective of HIM in your life? If you don’t like the answers you have, it’s never too late to change. Let God be the change in you. If you already like your answers, get over yourself, there’s always room to do more. And the next time you feel a complaint rising up in you – take time to count your blessings instead. This life is but a vapor and then it is gone…make every moment count.

Loneliness…

A father to the fatherless, a defender of widows, is God in his holy dwelling. God sets the lonely in families.” ~ Psalm 68:5-6

A variety of emotions have overwhelmed me being back in our house in Wilmington this weekend. Nick is so excited to be home in the only house he has ever known as home. He loves being in his room, swimming in his pool, and playing with his and Zack’s friends. He is loving introducing his puppy “Miley” to all of his friends. Seeing Nick this happy (the happiest we have seen him in weeks) makes my heart happy.

But, being back in our house is bittersweet. I see Zack everywhere….at the top of the stairs yelling down Mommy where are my clean socks?, at the door of the pantry and the fridge seeing what we have to eat, in the pool playing, in the front yard running with friends, in my bathroom (which he always chose over his own), and in his empty bedroom – which is just the way he left it. And while I cherish all my memories of Zack in this house, it is a painful reminder all of that will never be again.

Tears still flow easily and I ache with loneliness in this new world I have come to know but still do not understand. Some days are tougher than others. God sends relatives, friends and even strangers to help lift the loneliness from me and bring me into the company and companionship of others. I never really understood what it was like to feel lonely in a crowd until now. Even though many people may surround me, I realize that not one of them truly understands what I am going through. But I do believe God understands my pain – all of our pains – and yearns for us to let Him fill that pain with His presence and the fullness of His compassion and care…if only we will let Him.

(God said) “Never will I leave you; never will I forsake you” ~ Hebrews 13:5

Today is another new day. I will face the day with hope and embrace the smiles, the tears and everything in between.

Perseverance is not a long race; it is many short races one after another.” – Walter Elliott

Still praying and believing….learning to live life without Zack. A moment at a time…