A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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The Pain of Caring

Grace: A Child's Intimate Journey Through Cancer and Recovery

On any day our lives can change.

At any moment, our lives can change.

On this day of remembrance, ten years after 9/11, I feel sorrow.  As television stations show news clips of the destruction of the World Trade Center again and again, all I can think of are the lives. I think of the lives lost and the lives that have been drastically changed by the catastrophe. 

In the senseless violence of these acts of terror, I find myself asking, “What can I learn from this?” The answers spin around in my head, making me dizzy. There is so much to learn from this. What I am learning from this is not complex, but plain, simple truths…

—We are mortal.

—Our time here is short.

—Since our time here is short, we have no time for hatred.

—Our purpose here is not to gather and “get”, but to seek out and give.

—What The Media World tells us is important means zippo in the Great Scope of Life.

—We need to love deeply, fully, holding nothing back at all.

My heart is with the suffering—those who are grieving a loss– those who are fighting for their lives– those who are helping loved ones fight for their lives. With everything in me, I want to be a building block for change that will relieve suffering.  I want to notice when people suffer and not turn away.  I want to be grateful for all of the people who give me love. I want to be especially grateful for those who are close to me; the people who will always and forever love me unconditionally.

I feel that sharing in the suffering makes us more Heart Aware.  There is a love I have inside me that comes straight from the pain of caring. I would not trade this love for anything.

Please don’t be afraid of the pain of caring; it is great nourishment and terrific exercise for our hearts.

One year ago yesterday… never forgetting…

Isaiah Alonso

http://www.youtube.com/watch?v=pNO92du1jgI

Thinking of Isaiah

 

 

 

 

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Hold Them Close

Grace: A Child's Intimate Journey Through Cancer and Recovery

The incidence of invasive pediatric cancers is up to 29% in the past 20 years. Source: PAC2 & CureSearch

One week from tomorrow, I will have the honor and opportunity to sit in the Reading Chair to share excerpts from my book at the Central Coast Book and Author Festival. The event takes place from 10-4 at Mission Plaza in San Luis Obispo on Sunday, September 18th.  Will those of you who have read Grace please help me choose what you think would be the best passages, so that I can use my time best to raise awareness for childhood cancer? The people organizing this event had no idea that September, along with being Literacy Month, is Childhood Cancer Awareness Month as well. They do know now!

Maybe this for one… from Grace…

“I heard myself groan and pried my eyes open to look at the clock. Believing it was morning, I was shocked to see it was only midnight. Ugh. I tried to adjust myself to get more comfortable, but I found my weakness overbearing. I didn’t want to move. Heck, I couldn’t move. I let out another moan. My stomach hurt so badly. The pain was nearly unbearable, like barbwire was trying to be churned up and digested in my belly. The cries and moans that escaped from my lips woke Mom, who slept on the fold-out bed nearby. As she turned to look at me, I blubbered and groaned in pain. I just couldn’t help myself—that was one of the worst moments of my life. Mom reached for my small hand that hung, motionless, over the side of the bed. The tears flowing down my cheeks settled on my pillow, making it wet and soggy. I didn’t believe where I was or how I felt. It was all too intense, too scary—too mind-blowing. Lying there, I wondered if other people besides Nurse Cyndi and Mom knew of my suffering. While I sobbed, groaned, and experienced total and complete helplessness, people were sitting on their couches watching Jay Leno with a tub of Häagen-Dazs. My mind tried to grasp this concept, but it became too exhausted and failed. Words only from hell will begin to suffice in describing how I felt that night. The only thing that gave me hope was the warm, soft touch of Mom’s hand.”              copyright Melinda Marchiano 

 As I was saying in my last post, it’s those mini-lights of love and hope that help get us through the most difficult times. If we are not careful—and grateful—we miss them all. No matter how bad things got, I had Mom’s warm hand. My message here to all of the families who feel they can do nothing to help the suffering of their beloved child who is fighting cancer is to let you know that the best thing in the world was to have someone just be with me, just love me, just hold me.

So hold them close. Know that your presence, warmth, and love are exactly what they need—even if they cannot express it.

Hold them very close.

Reefie Needs our Help

 An update for everyone who has fallen in love with Reefie:

Please continue your support for this amazingly strong and incredibly lovable boy!

http://www.gofundme.com/ReefieCarneson-Family

A MIRACLE IN THE MAKING
by Charmeon FortheCure Carneson on Friday, September 9, 2011 at 2:29am

“OMW Dont know where to start. Ryan and Lydia are blown away. Such positivity, such incredible hope. Thank you Lord and everyone for getting him to this incredible hospital. Dr. Shah wants Reef back as soon as Novemberr as an inpatient for a week and then for an outpatient for 1 year. God knows how we are going to raise that amount of money in so short a space of time. Dr. Craig is soooo positive, says they have had worse contractions of hands and those kids are now using their hands perfectly. OPERATING WOULD BE A HUGE MISTAKE. They will have him eating, drinking talking and using his hands in a year. Dr. Shah says Cyclosporin is known to affect the hearing adversely and Reef may need to be fitted with hearing aids. The have a new drug on the market which apparently after his ONE WEEK of inpatient treatment will clear up his GVHD. GVHD WILL NOT BURN ITSELF OUT as we have been told, the contractures would only get worse and Reef would land up in a wheelchair. They are sorry that he was not seen to earlier. They have not seen a child with such bad GVHD before because they NEVER let it get this bad before treating it. REEF WILL HAVE TO HAVE ANOTHER PORT INSERTED. They also recommend that he see a pulonologist (horrified at the piece of port that is still in his chest) an opthalmologist, an orthopaedic surgeon – oh so may specialists. THEY WERE AWESOME – everything Reef had done he got a little toy, at one stage he dropped his toy, a nurse swooped down grabbed it, sterilised it and gave it back to him. GET THIS HE WILL BE ENROLLED IN SCHOOL there in December as they encourage that he mix with other children.
HE MUST NOT HAVE HIS BABY INNOCULATIONS NOW as we have been advised,. OH Lord I could ramble on here for hours – So much positivity at 2.30 am had my head reeling. Ryan will need a work permit in order to stay in the country that long. I AM IN TEARS HERE AND JUST CANT STOP – THANK YOU TO EVERYONE FOR GIVING REEF THIS CHANCE TO BE A NORMAL HEALTHY LITTLE BOY.”

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Millions of Mini-Lights

Grace: A Child's Intimate Journey Through Cancer and Recovery

Amid the turmoil and chaos that is childhood cancer there are millions of mini-lights. By mini-lights, I mean moments of intense joy and happiness. Today, I am so happy, I feel like the lights are more like a beacon!

Happy 7th Birthday Braden!

My buddy, Braden Hofen, turned seven years old today.  Not one of us can come close to imagining the battle he has been through. Braden may be only seven years old, but I look up to him. He helps me be who I want to be and who I need to be.  It’s easy to get our thoughts twisted around by the routine of living our daily lives—and then—someone brings us back to reality. Braden has taught me about reality, about loving, and about courage.

Today, Big Bear, as your adorable mom, Deliece calls you… I send you HUGE Big Bear Hugs.  Please hold onto them because I will be coming to collect them soon.

I want to share with you all of you the elation and joy we feel along with Braden’s mom on this day that many believed would never come… 

Deliece shared these feelings today:

*** So today is all about celebration and happiness!  Today is a day that I’m wearing my HOPE shirt and shouting “TAKE THAT cANCER” as loud and long and to as many people as I can!!  TAKE THAT cANCER!!! You DID NOT get today!! Braden wins this one!!!!

*** Thank you LORD for this day…truly a miracle! I was driving home from Price Chopper where I picked up his John Deere cake for his friends party tomorrow and was smiling and laughing so much I was bawling and had to pull over to get it together! Happy through my entire SOUL! Thank you Lord, thank you!!

Does anyone have any Kleenex nearby? Why is it that tears of joy feel so good?

Braden’s victories makes me want to work harder so that the day we find a cure will be closer. If we all work as hard as Braden has to fight cancer, I don’t see how the illusive cure cannot be right around the next corner. If Braden  can work this hard– remember he is still a kid–what excuse can we possibly have as healthy adults not to do all we can to stop childhood cancer?

Braden, lead the way my little buddy…

Braden’s Hope for Childhood Cancer

Happy Seventh Birthday Braden!

Isaiah Alonso Foundation asks us to “Like” this page:

Please “like” this page. LaFontaine Hyundai will donate $1 to childhood cancer research through Hyundai Hope on Wheels for every like!

https://www.facebook.com/LaFontaineHyundai?sk=wall

 

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Butterfly Kisses and Ordinary Grace

Grace: A Child's Intimate Journey Through Cancer and Recovery

“If you know someone who has lost a child or lost anybody who is important to them and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them that they died. What you’re reminding them of is that you remember that they lived and that’s a great, great gift.” ~ Elizabeth Edwards

Two outstanding nominations have come in for the Big Heart Red Carpet Awards for September’s Childhood Cancer Awareness Month. What makes me very happy and full of hope for our future is that both nominees are my age. If you think of teenagers as self-centered, obnoxious, difficult beings who don’t give a darn about anyone but themselves, I have three excellent examples of teenage selflessness that will turn your opinion around.

The first nomination is for Lauren Clements and the non-profit she created called Ordinary Grace. (Yes, I do like that name!!!) Lauren has a huge heart for children with cancer, dedicating her time and efforts to make their lives better.

The second nomination is for Lindsay Kunik and Holly Walsh and their non-profit, Butterfly Kisses Care Baskets.

Ordinary Grace and Butterfly Kisses Care Baskets have similar missions. Lindsay describes their mission:

“Butterfly Kisses is a 501(c)(3) nonprofit organization that operates with several major goals. First, our goal is to lift the spirits of children fighting terminal illness and their families. As we saw firsthand with Ellie, cancer is a family disease. It does not only affect the child, who is diagnosed, but the parents, grandparents, siblings, friends and so on. We pride ourselves in making the entire family our focus. Secondly, our goal is to raise awareness for childhood cancer through involving as many people as possible. We encourage everyone to help, whether it is through a monetary donation, a donation of a toy, making cards for the children, or simply sharing with a friend about Butterfly Kisses. As two 16-year-olds who started this organization off of babysitting money alone, we believe that everyone can make a difference. It isn’t all about the monetary donations or the money we raise, but about the spirits that we touch, and the lives that we move. This is a big part of who we are and what we believe. It is our belief that there is no excuse for not getting involved. We appreciate $1 or $100, 1 card or 100 cards, 1 toy or 100 toys. Everyone has the ability to make a difference through Butterfly Kisses.”

With Lauren Clements at Braden's Run

This is your daily opportunity to be a childhood cancer advocate while only lifting your finger for a click!

The Andrew McDonough B+ Foundation

Have you voted today? Remember, for this contest we have to VOTE DAILY in order to win $50,000 for The Andrew McDonough B+ Foundation to help families of children with cancer nationwide. With 46 kids being diagnosed daily, many families need our help. Click “Vote for this Idea” at http://pep.si/oFeHcX.

SPREAD THE WORD! 

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The Truth Is, It Takes Sacrifice

Grace: A Child's Intimate Journey Through Cancer And Recovery

“A man never stands as tall as when he kneels to help a child.” ~ Abraham Lincoln

 “If our American way of life fails the child, it fails us all. ~Pearl S. Buck

“Children are one third of our population and all of our future.”  ~Select Panel for the Promotion of Child Health, 1981

“Children are the world’s most valuable resource and its best hope for the future.” ~John Fitzgerald Kennedy

“It is easier to build strong children than to repair broken men.” ~ Frederick Douglass

In recognizing this month of September as Childhood Cancer Awareness Month, I am happy to share these quotes about children.  Today, and every day (believe me!!!!!) I want to give an outpouring of loving thanks to the people who work with and treat childhood cancer patients.  I have heard people say over and over again, “How can anyone do that… work with very sick children?” Right now, at this very moment, I want to express my sincere gratitude to everyone who “is able” to work with sick kids. Thank you for choosing the path you have chosen so that I – and many other children—are able to be here today.

I want to personally thank Dr. Dan, Dr. Gonzalez, Dr. A., Dr. Keshen, Dr. Pickert, and the entire staff at Cottage Hospital.

When I imagine the sacrifice it takes, not only to achieve the needed education, but to live each day with the great emotional impact of their occupations, my respect and admiration grows for everyone who has stepped into the “ring” of fighting childhood cancer.  What would we do if no one sacrificed?

The quotes above remind us that “our” children are more than worth sacrificing for. Giving now to help stop childhood cancer will certainly act as an “Insurance Policy” for our children in the future. You don’t need to get a medical degree, or work in a hospital, or even work with sick children… we all have something to give. 

Sharing from Max’s Facebook page:

600 CHILDREN get DX with cANCER a day 365 days a year. 200 children die from it each day 365 days a year. Is your child safe? $$ = Protection for children. Please buy a policy from www.curesearch.org, www.stbaldricks.org orwww.alexslemonade.org and treat your children’s future like you would your auto. Are your Children’s future in good hands? No restrictions apply, valid worldwide. STOP CHILDHOOD cANCER!

“The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be, another child like him.” ~ Pablo Casals

46-7 Stop Childhood cancer

 

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The Blanket Fairy

Grace: A Child's Intimate Journey Through Cancer And Recovery

I want to thank Britta Fleeson for the very first nomination– The Blanket Fairy— for the Big Heart Red Carpet Award for this National Childhood Cancer Awareness Month of September.  I find this fascinating… it is just as I had imagined… The Blanket Fairy would never show up to any award ceremony because he/she operates anonymously.  I will admit that I have had the extreme honor and pleasure of meeting The Blanket Fairy, but I have sworn to keep the identity of this loving and talented person a secret.

It’s okay Blanket Fairy— it just makes all of us love you even more. Would you like to know what The Blanket Fairy does? He/she donates soft blankets of love to children fighting pediatric cancer.  He/she follows blogs, Facebook and sites like CaringBridge to notice if a certain child needs a lift and then contacts that child’s parents about a gift that their child would enjoy. Warm, soft blankets played a huge role in my healing!!!  To receive something like this must be a wonderful moment that lasts and lasts for a child with cancer.

What a perfect nomination!

Would you like to volunteer to help The Blanket Fairy in  some way?

http://theblanketfairy.weebly.com/volunteer-fairies.html

Do you have more nominations?

Everyone have their gold ribbons on?

Just checking.

Love you Braden!

For anyone asking me, “Melinda, why the heck won’t you be still about all this childhood cancer stuff?”   I can’t.  You see, each day, children die from cancer.  It’s horrifying to me that it takes so long for childhood cancers to be detected.  It’s unfathomable to try to comprehend why childhood cancer receives so little funding in comparison with adult cancers.  Less than 2% of federal funding for cancer research goes to childhood cancer research. This first video does an excellent job of helping you understand this point; the second one reminds us all that time is short, that life is precious, that we all have to give sacrificially until we find a cure.  Please give generously from your resources.

The Pie: Childhood Cancer

http://www.youtube.com/watch?v=fjp1es04qgE&sns=fb

Michael Tells it as it is

http://www.youtube.com/watch?v=PW20UOk4sqU&feature=share

 

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Big Heart Red Carpet Awards

Grace: A Child's Intimate Journey Through Cancer And Recovery

Have you ever noticed (I’m not sure that it’s possible not to notice!) the headlines on the magazines available for purchase at our grocery store checkout stands? Right along with the latest headlines of the latest happenings of celebrities, there are captions commenting on how excellent it is that someone has lost weight, or how dreadful it is that someone has packed it on.

I have a hard time managing my brain when I look at those. I have a hard time managing my heart when I realize that we, as a society, value what our outer shells look like much more than we value the wholeness of our hearts. Is it just me, or is something sickening and wrong with this? I am not suggesting we discontinue bathing and grooming. I just think that The Grand Prize of Life cannot possibly lie in becoming The Thinnest, The Most Beautiful, or even The Most Famous.

I think the Grand Prize of Life lies much deeper… down in the deepest part of us.

Will you please help me look for winners of The First Annual Childhood Cancer Awareness Month Big Heart Red Carpet Awards?

I am looking for foundations, businesses, and individuals who have opened their hearts (wallets are appreciated, but certainly not necessary!) to fighting childhood cancer.

melinda@melindamarchiano.com

It’s way past time we start giving awards where they are truly deserved.

Know what’s funny…. if there were an award ceremony for this, no one would show up. These people already have their “prize.” They have helped children with cancer. They don’t need or want accolades or praise.

Those aren’t The Prize.

I leave you with —reminders of the reality of childhood cancer…

Andrew McDonough

Written by Andrew’s family…

 This B+ Hero is Andrew – the reason we fight so hard for a cure. Andrew was diagnosed with Leukemia (AML) on January 29, 2007, just 48 hours after playing 4 soccer games. His body went into septic shock and his heart stopped. Doctors said he wouldn’t live through the night, but he proved them wrong. He underwent nearly 50 surgical procedures, 4 strokes, multiple hemorrhages and a brain aneurysm that forced him to be airlifted to Jefferson Hospital in Philadelphia for emergency brain surgery. We were told he was the sickest child the hospital had ever treated. After 167 days in the hospital, Andrew passed away on July 14, 2007. www.caringbridge.org/visit/andrewmcdonough

 

46/7 is real... are you?

Written by Carla Mota…

… like always up all night fearing for my daughter… indescribable how it is to live fearing that your daughter might die… only someone who walks in my shoes will truly know the heartbreak I live with and for all of you who don’t, get on your knees and thank God NOW and beg him you never find out !!!

Update on Reefie... he's on his way to the U.S. today!

Written by Randy Hinton…

“If you force radiation ,steroids, and chemo on a condemned prisoner without his permission he can SUE THE STATE AND WIN. If you do it to a child it is called “Best medicine available”.

Praise the Lord for Remission

Written by Nikki Katz of Teddy Bear Cancer Foundation…

“Teddy Bear Cancer Foundation is currently working with a family whose three year old daughter is battling a Wilms Tumor. The family recently had to move out of their home into a small two bedroom apartment and have no furniture. If you or someone you know have any of the following items and wish to donate them please contact Nikki at 308-9941 or via e-mail.

Be sure to share this e-mail with friends, family and coworkers.

Queen bed, sheets, comforter, two pillows & pillow cases

Twin bunk bed, sheets, comforter, three pillows & pillow cases

One Twin Bed mattress

Sheets and comforter for a toddler bed

Small couch and chair

Dining room table with six chairs (not big)

TV

 DVD player

Standing lamp or two

Side Table for table lamp

Bookshelf

Thank you for your time and consideration.”

 

Reality check to all of America!

I will be awaiting your votes for the True and Most Deserving Winners in This Life.

 

 

 

 

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Think About the Unthinkable

 

Grace: A Child's Intimate Journey Through Cancer and Recovery

Welcome to the month of September.

This is National Childhood Cancer Awareness Month. 

“The White House announced today that September has been declared National Childhood Cancer Awareness Month.

President Barack Obama made the proclamation to highlight the recent successes in treating pediatric cancer and to underscore the challenges still facing young people dealing with life-threatening diseases.”

From an article in Hem/Onc Today, dated September 2, 2011 (today!)

http://www.hemonctoday.com/article.aspx?rid=87148

My friends, I ask you to continue your fight against childhood cancer. For those of you who may read these words who have never looked to face the world of childhood cancer, I ask you to turn and look.

What I want you to see most of all is not a “what,” but many “who’s.”

The children…

It is our serious responsibility to care for the young in our society. If each and every adult knew that tomorrow, 46 random U. S. children will be “chosen” as cancer victims, I don’t see how we can live on without swift, determined action. I don’t see how we can look at these faces and not think about how their lives matter. The dearest way we can show  that their lives matter is to make a difference for the children of the future.

Breanna

Thank you to everyone who is building the Childhood cancer War Machine for your hours of dedication, sweat, and tears. You know exactly who you are.

I do too.

For everyone else, please bring yourself to think about what is truly “Unthinkable.”

Children do get cancer.

If we know the truth, well…I guess we each have to think about it, and then think about what part we each play in that truth.

Without a doubt, we are all called to action.

Max...

 

“Unthinkable” by Alicia Keyes (played by Melinda in my Team Max Shirt (which by the way is a fashion “must have!”)

http://www.youtube.com/watch?v=pDI8FC_kMm8

Go ahead… think about the unthinkable… 

Beware, you will fall in love with the children, over and over again.

Fair warning.

 

 

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Gratitude

Grace: A Child's Intimate Journey Through Cancer And Recovery

Today, and every day, I wake thinking of the children still fighting their cancer battle.  I think of all the families thrust into the nightmare. My heart breaks for the families who have lost their child.  I share their sorrow and their grief, and I swear I will do everything I can to help stop childhood cancer— stop the suffering and great, great loss.

 As a survivor, there are no Earthly words to express my gratitude for life.  What I know is that it hurts to share in the suffering of others.  I understand why people need to turn away, because the truth is so painful that it strips away every single barnacle off your heart until it is barren and exposed.  This “exposure” is good for us, I think in some ways.  It brings us to the core of who we are and why we are here.  It makes us truly appreciate the love we have in our lives and makes us grateful people. It makes us giving people.

 During treatment, there were times I wondered if I would ever be able to dance again…

 I will always remember exactly how that pain felt—to not be able to dance— and to be truthful, it hurts my heart to even imagine it now.

 Today, as I share the pain of others, I will also rejoice in the extreme gratitude I will always have because I am able to dance!!!!!!!!

 From Grace:

 “The tribal-like music blared, and my body strained to do the movements. I was actually doing it . . . what I thought was entirely impossible . . . I was dancing. On the brink of crying out of joy, I was distracted by the intense concentration it took to make my body do what I begged it to accomplish. Tuesday was modern class, and my bald head had an almost internal glow under the dim lights.

I felt horrible. My vision was fuzzy, my legs were weaker than twigs, and my back moaned with the intense pain of the Neupogen shots. But somehow I kept going. As long as the music was playing, it carried me, supported me. I didn’t think. The music and my spirit guided my body through every single step.

The most amazing feeling on Earth is when I am just dancing, not thinking, stressing, or trying too hard to control the movements. It was happiness, and my love for dance, that moved me and kept me going. Experiencing a new, powerful connection with the melodic beat of the song, I felt like I was in a dream… it was too good to be true. Having virtually no coordination, God moved me, like His little puppet. Somehow managing to make my fragile body appear graceful, I danced in honor of life and Him.”

                        Copyright 2010 Melinda Marchiano Grace: A Child’s Intimate Journey Through Cancer and Recovery

May 2011 Nipomo High School Dance Company

“Held” by Natalie Grant, choreographed by Melinda (I hope you enjoy the dance!)

http://www.youtube.com/watch?v=rozVr1rhh50&feature=related

Have I told you before how much I love dance???????????????? 

Posing by Statue Ballerina on the Children's Hospital Hope Tour

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Sweet Baby Boy Reefie

Grace: A Child's Intimate Journey Through Cancer and Recovery

I first learned of Reefie over a year ago. He captured my heart immediately. He needs our help. This brave baby warrior is suffering from Graft vs. host disease.

Each time I write, I try to provide an opportunity for readers to learn more about childhood cancer and to become childhood cancer advocates. Even the click of a button on your computer can help organizations raise money for research. Today, I am reminded how important it is for us to give not only to childhood cancer research, but how important it is for us to dig deep to help individual children in need.

From CureSearch website:

Graft vs. host disease (GVHD) – This occurs only in an allogeneic blood or marrow transplant. Certain types of donor cells, called T cells (or T lymphocytes) react to the patient’s body and recognize it as “foreign.” Medicines are given post-transplant to prevent this complication, but it may occur despite this.

Acute graft vs. host disease – most commonly occurs within 3 months of transplant. The skin, liver, and intestines may be affected. Skin involvement occurs as a red rash that may be itchy or develop blisters. Liver involvement may cause jaundice or elevation of other liver tests. Intestinal involvement may cause very severe, watery diarrhea. Medicines such as steroids are used to treat GVHD and are often successful in controlling it.

Chronic graft vs. host disease – may occur months or even years after the transplant. Most commonly it is a continuation of acute GVHD. Many different parts of the body may be affected. Skin is the most common organ affected – patients may have red, scaly skin or skin that is thickened and tough. There may also be changes in the lining of the mouth, dry eyes, dry mouth, joint stiffness, lung restriction, and difficulty absorbing nutrients from foods. In addition, patients are at risk for infection because of the medications needed to control the GVHD as well as the effect of GVHD upon the immune system.

Rather than tell Reef’s story in my own words, I will let Kendal explain…

A message from Kendal Robinson

“I am raising money for REEF CARNESON AND HIS FAMILY….REEF IS ONE OF GOD’S MIRACLE WARRIORS…HE IS IN REMISSION FROM CANCER, HOWEVER HE FIGHTS ANOTHER DISEASE CAUSING HIM MUCH PAIN…GRAFT VS. HOST DISEASE AND ALSO DEALS WITH OTHER MEDICAL ISSUES.  REEF IS THE ONLY CHILD IN SOUTH AFRICA TO HAVE RECEIVED A BONE MARROW TRANSPLANT JUST BEFORE HIS 1ST BIRTHDAY, AND IS THE YOUNGEST PERSON TO HAVE RECEIVED ONE THUS FAR.  THE DOCTORS THERE DONT KNOW ENOUGH ABOUT GVHD, SO TREATMENT IS NOT AS GOOD AS IT MIGHT BE IN THE USA.  THIS FAMILY HAS BEEN THROUGH SO MUCH THE LAST TWO YEARS, IT’S BEEN NON STOP!!!  REEF IS A FIGHTER…AS THERE HAVE BEEN A FEW TIMES THEY THOUGHT THEY WOULD LOSE HIM….I BELIEVE GOD HAS DIFFERENT PLANS FOR REEF.  ONE CAN ONLY IMAGINE WHAT IT MUST BE LIKE TO STRUGGLE FINANCIALLY, WHILE TRYING TO SAVE YOUR CHILD AT THE SAME TIME…..PLEASE FIND IT IN YOUR HEART TO GIVE TO THIS FAMILY, AS THEY ARE LIKE A FAMILY TO ME….I LOVE THEM DEARLY AND HAVE BECOME VERY CLOSE TO THE ENTIRE FAMILY.  TO READ ABOUT REEF’S STORY…YOU CAN GO TO SAVEBABYREEF.COM  OR ON FB, TYPE IN 1000 CANDLES FOR BABY REEF, THAT WILL GIVE YOU A BETTER OUTLOOK ON THIS FAMILY’S STORY…GOD BLESS AND THANK YOU.

WE NEED YOUR HELP NOW, TO GET REEFIE TO THE USA FOR THE TREATMENT HE SO DESERVES…PLEASE PLEASE FIND IT IN YOUR HEART TO GIVE….THIS FAMILY HAS A VERY LONG JOURNEY TO TRAVEL BEFORE REEF IS ABLE TO BE THE BOY HE SO LONGS TO BE….PLEASE HELP BRING REEF TO THE USA…..

 The money collected will go towards THE MANY MEDICAL NEEDS FOR REEF AND TO HELP THE FAMILY WITH HOUSEHOLD BILLS, FOOD AND LIL’ SISTER MISS PAYTENS NEEDS TOO.”

http://www.gofundme.com/ReefieCarneson-Family

Baby Reef… may the citizens of the world share their blessings by giving all that you need, and may the United States welcome you with wide open, healing arms.

May you receive healing, sweet baby boy.

Let's help Reefie!

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