Wow. Who are the bully’s now???

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http://www.myfoxny.com/story/26549430/esb-facebook-review-controversy#.VBjjA2kkM1c.twitter

Dear Empire State Building, Part 16

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Empire State Building,
We, as a community, are not asking you to light up for individual childhood cancers. All we are asking is that you light up Gold to teach to the millions of people that don’t know today that kids get cancer too. When you light up for world cancer day, most of the viewers don’t know that it includes children. People are unaware that children can get cancer as well and when they think world cancer day, they think of adults. By lighting up gold, you represent and show that kids get cancer too. Again, we are not asking for you to light up Gray for brain cancer, even though it is one of the deadliest forms of childhood cancer. We are not asking for orange for leukemia or pink for breast cancer. We are asking for Gold, the color to symbolize ALL CHILDHOOD CANCERS… that is all..

I lost my friend to cancer in 2012. She was 12 years old. I have a current friend now fighting for her life as well. She’s 14. These kids need our help to raise awareness. We have celebrities donating money and time to these kids. We have people working three jobs, taking time to help raise awareness. We have college, high school and elementary school students starting clubs and raising money. All we ask is that one of the most important and well known buildings in the world, light up gold for one of their available nights to show the people who don’t know, that kids get cancer too.

If it is the way we have applied that is what is causing our request to be denied, then please do us the honor of giving instructions on how to apply differently. If you are going to keep denying us the real reason of why you won’t light gold one night in September, than please do not light up for movie promotions and anniversaries of events. You say you won’t light up for those events as well, however you continue to do so. If you are unable to break rules for dying children, why do four teenage animated turtles, get awareness?
Children are fighting for their lives, receiving adult medications for a disease that is under researched because people are unaware. If you wouldn’t give your child an adult size portion of Tylenol, why are we giving them an adult size portion of a toxic, second cancer causing drug as well? We need awareness.
Thank you,
Jenny Formica

Dear Empire State Building, Part 15

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Dear Empire State Building,

Two and a half years ago, this was my daughter. It is hard to look at these pictures; to go back there. She received a stem cell transplant for a very high risk form of Leukemia. To prepare her body for her transplanted immune system she was given high dose chemotherapy and four days of total body irradiation. All of this, just as she was turning two years old. We were told that the treatment itself could kill her and the list of immediate and late side effects was almost endless. We went ahead with the treatment though,signed those terrifying consent forms because, we had no other choice. There was no plan B. This, as her doctors told us, was her only hope for life. Three years post diagnosis, she is still here with us which, I am eternally grateful for but, the cost to her has been high. She has graft verses host disease in her skin, cataracts in both eyes, and her thyroid has been damaged. We have been told that she will not go into puberty without the aid of synthetic medication, and perhaps most crushing, she will be sterile; unable to have children of her own. She is also at high risk of developing secondary cancers and heart disease due to the extremely toxic nature of her treatment.

I have shaved my head twice in an effort to raise awareness and research funds, signed petitions to light the White House gold, kept a blog documenting our journey through the hell that is the pediatric cancer world, and I’ve often felt as though I’m just screaming into the void.

We, as a community, feel so alone and isolated. Evidently the Empire State Building doesn’t take lighting requests from individuals but, we are a community of parents, grandparents, siblings, extended family, and friends that is hundreds of thousands strong. We have hardworking researchers, hospital networks, and non-profit organizations desperate to change the options and outcomes for our CHILDREN. Childhood cancers need their own recognition. A light to shine into the dark places, where cures have yet to be found and young, developing bodies are not poisoned to death or near to it in order to have any sort of hope at life.

It is the right thing to do. Helping our children, the most innocent and undeserving members of our society, could never be wrong. Please help us. Please help kids like Olivia. Please help the desperate moms and dads out there who just want to give our children a voice in a world that largely ignores them. Please imagine walking a mile in our shoes. Please shine the light gold.

Sincerely,
Rachel Ambroson
Mom to Olivia

 

GOLD PARTY TICKETS!!!!

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The tickets for the Gold Party are going fast.  Get yours here and join us for a very sparkly night to celebrate the life of a very beautiful boy.

Can’t wait to see you all there!!

https://go.ordermytix.com/event/3867801

 

Get your Spicy on!

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They’re back! I am thrilled to announce that the spicy monkey SpiritHoods are now back in stock just in time for fall.  They make such great gifts and kept Ronan’s bald little head so warm in the hospital.  He loved wearing his so much.

 

100% of the profits go to The Ronan Thompson Foundation which is just beyond amazing.  A huge thank you to our friends at SpiritHoods for releasing these again just in time for September to help us bring awareness to this cause.

Thank you all for your continued love and support!!

 

https://www.spirithoods.com/spicymonkeys

Dear Empire State Building, Part 14

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As a mother of a child fighting cancer, I’m deeply saddened to hear that pediatric cancer is not worth enough, special enough, important or whatever it may be, to be recognized and have Empire State Building go Gold for just one night.Living in pediatric cancer world is horrible for so many reasons. Seeing your child in pain, the feeling of being helpless in so many ways, the agony of treatment plans, sleepless nights, and anxiety are just some that come to my mind, and there are plenty more that I have experienced in the last year and a half. On top of all that I also feel sad, disappointed, let down, ignored by the society we live in.
That’s what brings me to write this letter to you.
I read the statement published by ESB in the response to the EmpireGoGold campaign and it brings out all those feeling of sadness, disappointment, let down, ignorance.. The responses is exactly the reason why community of parents who lost children due to cancer, parents fighting the battles of cancer with their children or advocates for pediatric cancer are trying to be heard, trying to bring attention, or almost uncover the truth about this. I’m begging you to understand the reasoning behind this need, to hear the statistics about funding for pediatric cancer, to read about drugs and treatments offered to children.

My 4 year old, should have a better chance, better treatment plan, less invasive protocol as she is fighting for her life. As voices of our children, we are asking for awareness which equals funding, funding equals research, research equals cures. Life with child battling cancer feels like you are attack every second, you are harassed every minute and still are considered very lucky because every day 7 children die from it, and I cannot even try to imagine what that feels like.

I would never ever wish this on anyone, but what I do wish for you and many others is not to look away because this is a reality of so many, it can happen to anyone. Here is my passion, my reason for living, breathing, fighting. But it’s not just her, it’s also for 46 kids who will be diagnosed with cancer today.

Kids deserve so much more.

Dear Empire State Building, Part 13

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Dear Empire State Building,
I would first off like to say I am writing this letter from the bottom of my heart, the depth of my soul and to express my push for Pediatric Cancer Awareness, research and funding which comes down to me being on board for and with #empiregogold.
A few years ago I was diagnosed with a slew of chronic health conditions which left me in a place I never had been before. Not only was it dark and twisty but it was lonely and quite possibly the worst place I have ever been. One night I stumbled upon Maya’s blog and fell in love with one of the most heartbreakingly beautiful love stories I have yet to encounter, at that point however I was hopeful, and for the first time in the months felt that. Within a day I got caught up on her blog and continued to follow her fight for her son every day, but more so follow the life of a not even 4 year old who was so perfect in every way. As I followed their story I found myself learning lessons I did not even know I needed to learn. Slowly I learned it was okay to not be okay, it was okay to cry, to scream, to swear and rely on people for support. I learned the importance of life as a whole, how precious and fleeting it is. But most of all I learned about love and how if love alone was strong enough, Ronan would still be here today, spicy as ever. While I followed their story, I was amazed at Maya’s blunt honesty and Ronan’s spicy loving heart. I found myself smiling at pictures of this little boy, beautiful and bald as he played with his star wars figures, as he despite fighting for his life every day continued to smile, laugh and love all while causing mischief and opening his heart to all who crossed his path. I in return found myself following by lead, taking life advice from a 3 and a half year old and also believing in miracles.
When you see billboards or ads on TV for hospitals you see bald kids smiling, laughing and singing uplifting songs, but that is so far from reality it actually hurts. While I followed Ronan as he fought like hell I learned of brovaric dressings, barbaric outdated treatments, missing eye lashes and that these children that are being thrown into a war they did not sign up for. They are losing their hair when they should be learning their ABC’s. They are laying in agony begging their parents to make it stop, to save them when they should be playing with their older brothers or spilling chocolate milk. The reality of childhood cancer is not only ugly, but it is horrific and beyond tragic while leaving parents and siblings in its wake, lost and the world at loss of what to say about the beautiful boy who died.There is no peace you can take from that. There is no solitude in the fact these children are stolen from their own lives or have gained “angel wings”. What does that even mean? How can a 3 year old have earned wings? Society says these things because THEY are uncomfortable with reality but until we face it nothing will ever change.
When Ronan died I felt like I lost someone close to me, I cried as I read Maya’s posts and ask why? WHY is this happening, why are people not screaming from roof tops at how messed up this is. WHY are more people not angry? Why are we not doing everything we can to help these kids who are our future get a chance to see past their 10th Birthdays? Why are people still looking at Pediatric Cancer like its sunshine and rainbows and they are in a better place? WHY is this acceptable?
As I myself grieved for not only Ronan but his mother Maya, his father and brothers I started doing more research, I started trying to figure out how can I make an resemblance of a difference. I was sickened to learn that Pediatric Cancer receives the least amount of government funding, that they have developed only 2 new protocals for treatment in the past 20 years for these kids while still using modified adult treatments leaving them in horrific shape if they do survive.
Ronan was more than a boy with Neuroblastoma to me; he was this beyond wise child who faced every day with strength beyond comprehension and love without measure. In my life I have faced not only my own mortality with my heart stopping 6 times but I have witnessed death of the old and young and it’s not easy either way .With Ronan however, knowing that it was because of lack of medical knowledge, lack of funding and lack of overall treatments that aided in his death left me beyond words.
I hope you are still reading this Empire State Building, I hope you are thinking about the beautiful little boy with the most stunning blue eyes who died days before his 4th birthday because of lack of awareness and treatments. By lighting the tower gold for one night, you are not only showing those who are still fighting so courageously that you support them, but you are showing that those who have lost their fight are not forgotten. That the families who are grieving are not forgotten. That those children did not go unnoticed for their ferocious battles but most of all That you yourself support Pediatric Cancer and will not let it go unnoticed because it’s not pretty, that you will help us be seen for the entire world. So that Gold never goes unnoticed again.
Thank you for your time and patience while reading this letter.
This is for Ronan Thompson and his Mother Maya who have both made me a better person inside and out as I learned the true meaning “All good things are wild and free”.
With sincere appreciation of your time,

Ashley Graydon

Dear Empire State Building, Part 12

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Dear Empire State Building,

 
When I was younger, I thought all kids got to grow up. Of course I eventually figured out that kids do indeed die too, but only from accidents, right? When I was old enough to realize what cancer was, I thought only adults got it and maybe one or two kids a year. I knew of St. Jude’s and I thought that the kids in there were the only kids in the world to have cancer. One hospital full of kids? Not so bad. Of course it was terrible that those kids had cancer, but they all lived, right? That’s what I thought. I thought the only cancer kids could get was leukemia. Sure, they lost their hair, but hair grows back.

Personally, I have never been affected by cancer. I don’t know anyone who has cancer and I don’t personally know anyone who has ever died of cancer. I remember the first time I really found out about childhood cancer. It started with a little boy I have never met who lives thousands of miles away. His name is Ronan. When I found out about him, it was too late. Still, I read his moms blog from the very beginning and still read it today. What I learned from that blog is how terrible kids cancer is. Everything that little boy went through was so cruel, and for what? He died three days before his 4th birthday after 9 months of fighting for his life. I remember reading the blog posts from around the time he died and I was absolutely devastated. I never knew what it was like to hold his little hand, hear his sweet voice, or look into his precious eyes, but it changed who I am. After Ronan, I started to learn of other kids who had cancer and went through the same thing and many who have cancer still. I learned about all the different types of cancers and how many have terrible survival rates as low as 0%. Yes 0%. Can you imagine? Imagine a doctor telling you your child’s headaches are from a brain tumor and that there isn’t anything they can do. Imagine your child dying two months later. That’s the reality of childhood cancer.

Because of Ronan I am aware. Because of Ty, Ezra, Ava, Ryan, Sam, Gage, Jace, Mason, Luke, Thomas, Lilly, Bella, Achilleus, Emma, Talia, Robyn, Sammy, Cannon, Ollie, Max, Lacey, Mac, Nathan, Josh, Caden, Kicker, Dax, Hayden, Shay, Bethany, Gabriella, William, and so so many more, I am aware.

Most of the kids I just mentioned were once apart of 7 children that die EVERYDAY in the US alone. All of their parents were once told “There is nothing more we can do.” Why? Because there isn’t enough funding for research. Why? Because there isn’t enough AWARENESS. Awareness matters. That is why we are asking you, Empire State Building, to go gold. It really does matter and it isn’t something silly to be denied. With more awareness, kids won’t have to die from cancer.

Empire State Building, and whoever else may read this, YOU can do something to help these kids. Please do it.

Sincerely,
Emily

Dear Empire State Building, Part 11

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Dear Empire State Building,

I am sure you have received many letters much like this one, and many more will come. My hope is that you realize that each letter you receive represents a child, a precious human life that has fought that unfair fight of childhood cancer. The letters and petition that have been handed to you asking you to light the Empire State Building gold for childhood cancer awareness represent a chain reaction. This chain reaction is one made of broken hearts, tired, sad mothers, fathers, sisters, brothers, grandparents and friends of the strongest people in the world who are thrust into the world of cancer with no choice and absolutely no warning.
I knew a brave little soul who was pushed into that dark world years ago.

Dylan Anthony was an eager, bright, blue-eyed little boy with a mischievous smile and a contagious laugh. He was in the summer of his fourteenth year of life when he was diagnosed with brain cancer. As a ninth grader, the thought of death never crosses your mind even with such a serious diagnosis. I remember laughing when when I was told, not because I found this news to be even remotely funny, but because it was so hard to wrap my mind around. Cancer does not happen to fourteen year olds, right? Wrong! It does. Dylan was so sick, weak and tired during his treatments that the only people really allowed to be around him was his family.
All his friends could do was watch Caringbridge for updates on how he was doing on a day to day basis and get a phone call in every now and then when he was awake. When he did come to say hi months after his diagnosis, the harsh steroids had left him unrecognizable. After months of treatments that just left him sicker, the chemo just suddenly stopped working. Two weeks later, he was gone. Two things stick out in my mind the day of his funeral. His eight year old brother as he carried his big brother’s coffin up to the front of the church and his mother’s scream as she lied herself on top of his coffin yelling his name over and over as if to will her son back from the dead.
That is the ugly truth about childhood cancer. A fourteen year old died with dreams unfulfilled and a life ended before it had any chance to really begin. Dylan and so many others fight every day for a chance at life so that they can one day make their individual mark on the world. You have a chance to start a chain reaction of your own and make a difference in the world by lighting up the Empire State gold to raise awareness for these sweet, innocent children like Dylan who deserve so much better! I ask that you take that chance!

Alexa Kent

Dear Empire State Building, Part 10

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Dear Empire State Building,

I am taking the time to write this letter because my son, Grant was diagnosed with Non-Hodgkins Lymphoma at age four and is now a cancer survivor! See, that very first sentence sounds so cheerful and happy. It doesn’t make you think about the fact he went through hell to get where he is today & continues to struggle due to late side effects from chemotherapy (poison) being injected not only into his veins, but his spinal fluid every other week for almost three years, and full cranial (brain) radiation. Each time they injected the high dose chemo into his spinal fluid he had to be sedated. Read that sentence again. Yes, for almost three years my sweet boy had to be sedated every other week to have poison injected into his spinal fluid. This doesn’t include the biopsy, port being put in his chest, exploratory surgery, radiation treatments and bone marrow asparates (he had to have so many our insurance didn’t want to pay for some, they said it wasn’t necessary.) He now has cognitive side effects from the therapies.

You see, one beautiful July morning in 2004 Grant had gotten out of bed and his little face was very swollen. He also had a cough and some wheezing. I actually thought maybe he had been bitten by a spider. I made an appointment with his pediatrician. The pediatrician diagnosed Grant with having allergies. That evening Grant had fallen asleep on the couch and as I went to carry him to bed he started crying & could not catch his breath. As 911 was about to be called he took in a deep breath & started breathing normal. My husband & I decided we would take him to one of the Children’s hospital satellites first thing the following morning.

The next morning they took a urine sample, chest xray, and did a physical. We were told everything looked good and they agreed Grant probably just had allergies. They did give us a prescription of steroids to bring down the swelling.

When we arrived home there was a message waiting for us from the Children’s satellite…the X-ray had not been read correctly. It was read by someone in training. After we left, the attending radiologist looked at it and was concerned. We were instructed to continue the steroids and go to the main Children’s Hospital if Grant’s symptoms worsened and in two weeks follow up at the main Children’s Hospital for a CT scan.

The day of the CT scan our lives were forever changed. We were told our baby had Lymphoma. I wanted to just lay on the floor and die right there. I asked God to pease just let it be me, not my baby. We were told Grant had a huge mass in his chest. It was so large it was blocking his bodily fluids from draining properly through his body. The fluids were getting backed up in his head and around his left lung and heart. He was admitted to the oncology floor right then. Just looking at the word oncology made me feel like I was going to vomit. Grant was crying by this time. He was wanting to eat and the iv taken out. My husband and I tried to explain to him he had “yucky” stuff inside him and the doctors were going to get it out by leaving the iv in. Grant spent his fourth birthday in the hospital.

A biopsy was done and Grant was diagnosed with stage III T-cell Non Hodgkins Lymphoma. It was do hard looking at Grant’s chest where they had cut his little chest wide open. The doctors told us this was rare, usually children are 12 years old or older when diagnosed with this type of cancer. We were told this was an aggressive cancer and could grow from a grape to a grapefruit in day. They said this cancer either responds very well to chemo or grows out of control. They gave us hope Grant would respond well to the therapy and felt he had a good chance of going into remission.

The doctors started Grant on a treatment plan, but the mass wasn’t responding or growing out of control. This cancer was mean & had them confused. It was then they told us they weren’t sure if Grant had a 50 % chance to beat this. His treatment plan was then switched to the most intense protocol they could offer. This would be close to three years of treatments & consisted of at least every other week staying in the hospital, (usually about a week and a half and we knew our one year old didn’t understand why we had left him behind) and after getting half way through the protocol Grant would be able to be admitted to “day hospital” (8hrs) of chemo and go home.

This protocol also consisted of Grant vomiting and unable to control his bowels, us holding him down so they could inject a huge needle completely into the muscle of his thigh while he screamed “Please mommy, no more no more, mommy!” (I still physically get sick when I think of it.) Grant crying because he missed his brother, being admitted whenever he would get a fever due to his immune system being weak and unable to fight off any infection, being admitted because he had a battle with cellulites in his foot and leg due to a splinter that wasn’t visible to the naked eye, trying to explain to our four year old he can’t eat or drink anything all morning and early afternoon because he will be getting “sleepy medicine” , watching bags of another persons blood & platelets going into our baby over and over again, over hearing the oncologist tell the team of doctors to do another blood draw because he would rather hold off on giving Grant blood that day because he had had more blood given to him than any other child on the floor, your child’s face now swollen so badly it looked like it was going to pop from steroids, two needles stuck in his chest, him having to walk with an iv pole everywhere he wanted to go, (if he had the energy), sometimes not being able to walk at all from the pain in his legs from the chemo, having anxiety so badly if he touched something I was afraid he would get a germ and die from an infection… I’m sure there are many other horrific encounters that I’m not thinking of at the moment.

We had gotten to the place in the protocol where Grant should have reached remission, but the mass was not responding to the treatments. Our oncologist wanted to do one more big round of high dose chemo and we agreed. Unfortunately, the mass remained the same. The only change was the impact it had on Grant’s little body. He was already so weak & frail, but now it was more then I thought I could take. He was a skeleton with skin and he had mouth sores in his entire mouth throughout the inside of his entire body down to his rectum. (Side effect from the chemo) He was unable to swallow his saliva & had to spit it in a cup. A pain management team was assigned to him and hooked another tube up to him with morphine, but it was a PCA pump. This would allow Grant to push a button every few minutes to give himself the morphine.

It was then that we were told Grant’s body couldn’t handle anymore treatments. They told us they couldn’t get him into remission. They mentioned a study drug, but didn’t know much about it. We were coming to the end of the road. Really? After all this, I’m going to lose my baby? After him being so strong and brave, there’s nothing else?

We were in the hospital a month and then we were sent home. By this time Grant’s oncologist had come up with a plan and mentioned wanting to do exploratory surgery on Grant in two weeks. He was hoping Grant would gain some strength back by going home for a couple of weeks.

His oncologist mentioned sometimes scar tissue can look like cancer on the CT scans. We were concerned because the mass was not only on the CT scans, but still lighting up on the pet scans. (Indicating it was cancer) This was going to be a very invasive surgery. The surgeon wound have to go around Grant’s left lung and heart to get his hands into Grant’s chest to really get a good look. We agreed to the surgery. Many of the other oncologist were against it and the surgeon didn’t recommend it. Our oncologist had become family and we trusted him. Not to mention we were praying for scar tissue, this was the only way to find out and we weren’t going to take our child home to die, we were never going to stop fighting!

During the two weeks at home we prayed & asked others to continue to pray and to ask others to start praying and sending good energy and thoughts our way. Two weeks went by and Grant went for the exploratory surgery. The surgeon called to a conference room and said he couldn’t believe what he was about to tell us…..there was no sign of the mass or scar tissue! Both the oncologist & surgeon couldn’t explain it. The oncologist could only suggest the chemo must have been working on the cancer cells during the two weeks we were home. Grant was scanned again that day to be sure nothing showed up ( what had been appearing on the scans- the mass) and nothing did! A true miracle.

Yes, this is all great and happy, BUT Grant will always have to have follow ups to check for relapses & for damage to his body from the treatments. He has & will continue to have blood work with the oncologist, EKGs, echos, blood clot checked he has a blood clot in his heart most likely caused from the port), etc with the cardiologist for the rest of his life. They will never say Grant is cured because of the type of cancer he had. He has to be seen by a neuropsychologist because he has cognitive side effects from the radiation & chemo injected into his spinal fluid because the doctors wanted to be proactive. The longer he is off treatment the higher the risk of having heart problems increase, growth issues, reproduction side effects, relapsing, and the list goes on and on.

Have you ever heard someone say “I wish my baby came with a manual.” Well, mine does. Grant will forever have to keep a huge manual with him containing all his treatment information from Children’s Hospital. This will be used by any new doctor Grant may choose to see as he becomes an adult. I am forever grateful my child is a survivor, but I live with survivors guilt, have horrible anxiety, PTSD & my own health issues now. No, I don’t want pity, but just shedding light on how this disease can screw up so many lives in so many ways. This disease is so evil. It continues to try to win in other ways even when you hear the beautiful word “remission.”
We need to educate society on the horror these children go through both during and after treatment. We need to find treatment plans to beat pediatric cancer and allow these survivors to lead normal lives…before you decide NO on lighting up GOLD just read the following and imagine the child you love most being the child you are reading about…a few days ago you were told this child has an aggressive cancer, you have to hold the child down, (you, the person who is suppose to love and protect them) so some stranger can come and stick a huge needle in their muscle, then the burning of the poison. Oh, but wait…the vomiting, let’s not forget the vomiting that follows along with uncontrollable bowel movements that their bottoms bleed, mouth sores so bad they can’t swallow their saliva. Telling this child they are not going to have hair much longer, you’re sorry, but they can’t go home, you know the stitches hurt, but you know they are tough, you know they are hungry and thirsty, but they have to wait so the doctors can take “pictures” Can you imagine being that child? That parent or adult? I can tell you, it’s so horrific there are no words to describe your emotions or feelings. Just think, this is normal for these little children fighting for their lives. People turn their heads because it’s too sad & think to themselves “research is being done”, there’s nothing I can do to help anyway. Turning their heads will not help & the people that do know they can help and want to help need to be made aware of where to donate (pediatric organizations so our children receive the funding) and how they can help. That’s why we are asking you of this huge favor. We don’t feel like you owe it to us, but don’t you believe these children deserve to be recognized for their courage, bravery, and battle they are up against? I know I do.

You mentioned lighting up for world cancer day…Yes, all cancers are terrible. Yet it seems as though we only hear the sad stories of the adults who are fighting & going through hell or who have lost to this battle. Let me tell you, children experience just as much if not more. As an adult you understand why people are doing things to you that hurt or make you sick, young children do not. As a nation we are recognizing and supporting each other as adults. If we don’t do it for our children, who will?

I truly believe if we will stand together as one we can and will change the lives of children diagnosed with cancer. Now, please I ask you on behalf of all the people all over the world that have or will be effected by pediatric cancer, GO GOLD!! It’s one day that will change millions of lives! Wow, wouldn’t that feel great!

Thank you for taking the time to read my lengthy letter. Sending positive energy to open the mind and hearts for all at the Empire State Building,

Kara

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