You are featured on Babble.com, as one of the Mom’s who is changing the world. You are number 1 on their list. Number 1 for your Charity work. Now, I know I don’t know you personally, but we just might have a few things in common. If this Open letter somehow reaches you, I really hope you will take 5 minutes to read it. I’ll start with the things that we seem to have in common, Mel. Is it o.k. if I call you Mel?? I hope so, as it seems to fit the picture of you that is smiling back at me from my computer screen. You seem like a happy person. I’ll bet you would be fine with Mel. So, Mel… here we go. Let’s start with the first thing I think we may have in common, which is the one that I think is the most important. Being a mom. I am a mom too. It is the most rewarding thing I’ve ever done in my life. Right now, I am having a hard time being a mom because I just had my 3-year-old stolen from me by this disease called Neuroblastoma. Have you heard of it? I’m assuming not. I hadn’t until the day my precious 3-year-old son, was diagnosed. I’ll give you a little tutorial so you can get a better idea of what it is. I could just be vague, and say he was stolen by Childhood Cancer, but I can’t do that to him. He deserves to have you know the exact name of the monster that took him away from me.
N E U R O B L A S T O M A. There it is. It even looks ugly just written out. Oh, Mel. You have no idea how ugly it is. It is killing hundreds of children a year and nobody seems to care because they say it is RARE. How can something that over 700 kids are diagnosed with a year, be considered rare? I’ll never understand that. Even if only 50 children were diagnosed a year, that should still not be considered rare, because it is a problem and since when did our children’s life value become justifiable because of a “rare number?”
Here are your cliff notes to catch you up to speed. I know you are a busy woman, so I don’t want to keep you longer than I have to. Neuroblastoma is a rare disease in which a solid tumor (a lump or mass caused by uncontrolled or abnormal cell growth) is formed by special nerve cells called neuroblasts. Normally, these immature cells grow and mature into functioning nerve cells. But in neuroblastoma, they become cancer cells instead.
Neuroblastoma most commonly starts in the tissue of the adrenal glands, the triangular glands on top of the kidneys that produce hormones responsible for controlling heart rate, blood pressure, and other important functions. Like other cancers, neuroblastoma can spread (metastasize) to other parts of the body, such as the lymph nodes, skin, liver, and bones.
In a few cases, the tendency to get this type of cancer can be passed down from a parent to a child (familial type), but most cases of neuroblastoma (98%) aren’t inherited (sporadic type). It occurs almost exclusively in infants and children and is slightly more common in boys than in girls. There are never really any warning signs and it is usually not caught until it is Stage IV. That is when Ronan’s was detected and our only sign was his little left eye, started to look lazy. Other than that, he spent the summer in Washington State (another thing we have in common) running around, happy as clam.
Children diagnosed with neuroblastoma are usually younger than 5 years old, with the majority of new cases occurring among those younger than 1 year old. About 700 new cases of neuroblastoma are diagnosed each year in the United States.
This is the disease that killed my child. Him. Ronan Sean Thompson. Age 3. And yes, those are his real eyes. I know. Have you ever in your life, seen eyes that are such a piercing blue color? I hadn’t until he came along. He looks like a fake doll, doesn’t he? He was not fake. Although now that he is gone, my mind often tries to trick itself into thinking he was not real because the pain of missing him is sometimes too much to take. You have no idea what I would give to be able to look into those eyes again. Instead, I know get to stare at his Urn full of his ashes on top of my dresser in my bedroom. Can you even imagine such a thing? I couldn’t, until it happened to me. It happens, Mel. All of the time but it seems that people think Childhood Cancer is too sad of a story to shed any light on. That to me, may be even sadder than the death of my son. Well, maybe not… but it is very close.
The second thing we have in common Mel, is that we are both if first place for this contest. FIRST PLACE! I’ve never won first place at a thing in my life! O.k…. maybe I have, but I don’t think I should count that beer chugging contest that I won in High School. Errrr…. I mean when I was 21. A stranger nominated me for this and I have had so many people voting and spreading the word because they believe in me and the love that I have for my son. I don’t know if you win any money from this contest, Mel, because I think you are in a different category because of your very well known last name. I’m winning in the Charity category and I am just a simple, stay at home mom. Nobody really knows me the way they know you, but I am about to change that and I could really use your help. If I win, I win $5,000 dollars which will go to the charity I have started up in honor of my son, The Ronan Thompson Foundation. I have decided to take that money to help a local family whose little boy was just diagnosed with Neuroblastoma as well. I know $5,000 dollars seems like very little to you, but that very little is going to go a long way for this family. They have insurance, but I know how quickly everything adds up. I know how stressful it can be to have a child with Cancer and to have all the little problems start to pile up as well. If I can help this family, by doing something as little as this, I have decided I would like to do so. I’ve also decided that even if I don’t win, I am going to give this family $5,000 dollars to help them. They deserve a break and Ronan would want me to help. He would be proud to know that I am trying to take the pain of his death and trying to channel it into helping other. We are fortunate to be able to do so thanks to all the support of our family, friends, strangers, and community. We are very much blessed in that way.
The third thing we have in common seems to be our hearts. You seem to have a good one. I know I have a good one. I had a good one before all of this, and now it is trying to grow even bigger. I’m not going to lie. At this very moment, my heart just feels heavy, black, and empty. But I cannot live with my heart like this forever. Ronan filled it with so much love that I know it will find it’s way back to me. It’s only been 4 months since I lost the love of my life. It is going to take time to get my heart back, but I will do it for Ronan and for his 8-year-old twin brothers. I don’t have a choice as I still have a responsibility to give Ronan’s brothers a really good life. I don’t think their life would turn out very well if they had a mommy who had lost her heart and never found it again. I do believe, that in time, my heart will find it’s way back to me. I just have to be patient. Your heart seems to be filled with love, which is such a beautiful thing. I am sure you know how lucky you are to have healthy, beautiful children.
I noticed that a lot of your Charity work goes towards Humanitarian efforts which I think is amazing. The number $37 BILLION, jumped off the computer screen to me. WOW. That is impressive. $37 billion dollars that you use for Humanitarian efforts such as Ghanda and funding child hunger programs. I wonder if you would consider, Childhood Cancer as a Humanitarian effort? I’ll bet if you spent some time on a Children’s Oncology floor, you would. You would see how the lack of financing, education, and awareness is basically murdering these innocent children. Yes, I said murdering which I know is a harsh word, Mel. But it is the truth. It is because of the lack of these things, that my child was murdered by not only Cancer, but the Medical Community as well. They failed us which is so heartbreaking because it is so unnecessary in this day and age. Did you know that Pediatric Cancer is the #1 disease killer in the US? Pediatric Cancer kills more kids then AIDS, Asthma, Multiple Sclerosis and Muscular Dystrophy COMBINED and the really sad part of this is that no one knows this. Doctor’s do not educate parents about this. And to top it off, Pediatric Cancer research gets the least financial funding. Less than 3%. That is tragic and I just don’t understand why people are not making more of a fuss about this. I think a lot of it has to do with the lack of awareness the comes with Childhood Cancer. It is easy to look the other way and ignore it because it cannot happen to you. I’m here to tell you, it can. This is real and not something to be taken lightly. Our future generation is dying by the thousands, everyday. What needs to happen to make a change with the way this is overlooked? Do the streets need to be lined with the dead bodies of our bald-headed kids to get someone to pay attention? That is what it is starting to feel like.
I am putting your Momination blurb in here are well. This is what they had to say about you.
Co-founder and co-chair of The Bill and Melinda Gates Foundation, Lady Gates is a humanitarian powerhouse. The organization currently manages projects ranging from domestic school reform to biodiesel efforts in Ghana and has managed more than $37.1 billion in assets since 1994 and projects in more than 100 countries. Both Gates and her husband take a big picture view—save the most people first. Major Gates Foundation projects have included substantial funding to child hunger programs, polio eradication efforts, immunization work, and farm support programs. As for her personal stake in the Microsoft empire, Melinda and her husband have reportedly reserved $30 million of their empire for their three children and plan to donate much of the rest of their $56 billion net worth to humanitarian efforts worldwide. As for why she does it, Melinda cites her daughter. “I really want her to have a voice, whatever she chooses to do,” Melinda told Fortune Magazine. “I need to role-model that for her.”
You say your daughter is a big reason for you doing what you do. I am sure you are an amazing role model to have and she is so lucky that you are teaching her about all of the worldly things in life. You want your daughter to have a voice and I have no doubt she will have a powerful one and do amazing things with it. I wanted my Ronan to have a voice too. He doesn’t get to anymore so that voice now has to come in the form of me. If you were to know me, you would know that I tend to be on the quieter side. I don’t really like attention which seems like such an oxymoron since I have taken our very personal tragedy and turned it into a very public forum. I have a couple reasons for doing this, but it actually very simple. Everything I have done from the time of Ronan’s diagnoses, until now has been about living my life the way he would have wanted to live his. This fuel and fire inside of me, all comes from Ronan. He gives me the strength, power, and love that keeps me going. I know people don’t really want to listen to our sob story, but I refuse to quit being honest and blunt about it until things start to change. I have to continue to break the rules for Ronan, which was one of our favorite things to do together; to make these changes happen. I know most people do not understand the way I have chosen to share our story in such a public way; but in order for things to change, this is how it has to be. My son died, Mel. He doesn’t get to live on this earth anymore and he deserved to have the most beautiful life. His soul is still here though and I know he is hurting from seeing his mama, his best friend, in so much pain. I am here to tell you, my soul will never be at peace until I start to see a change and less and less children are dying from Childhood Cancer.
So can you help me? Can you help Ronan? It seems like such an easy thing to do. One look at his beautiful face should be enough for you to want to. I need somebody powerful on our side. Somebody who has the heart, compassion, and voice to help us. You are already doing such wonderful things in the world. How about adding Childhood Cancer to your list? Before you say no, can you do me this favor? Can you at least go to your local hospital and visit their Oncology floor? I know this may be too sad for you but if you need strength, you can channel it from me. I lived in and out of hospitals with Ronan for 8 months. I survived. I promise you will too. I also promise you that by stepping on that floor, your life will be changed forever. In the most beautiful way possible. Each and every one of those kids is a GIFT. I need your help so that they can stop being thrown away. They deserve to grow up into the amazing adults that they want so badly to become.
Thank you so much for your time tonight. I hope my letter made sense to you as I now function on very little sleep due to missing my little boy so much. It’s 2:43 a.m. here. Sleep is no longer my friend. I worry about Ronan more now that he is gone, than I did when he was still here. It is amazing how strong a mother’s love, truly can be. My love should have been enough to save him, but it wasn’t. I have to live with that everyday of my life. I have to learn to live a new life, without him. The only way I am going to be able to do that, is by getting people to start paying attention so hopefully another family, someday, will not have to suffer like we are.
G’nite, Mel. Sweet dreams to you. Thank you again for your time.
Mama to Ronan