Breaking News! Childhood Cancer is NOT Rainbows and Buckets of Sunshine!

Ronan. Last week, I got really mad. So mad that I was left tossing and turning many nights. My anger comes and goes, but it was due to an email that I got that caused my anger to boil over in a way that has not happened in a while. I will share this email in a bit, and yes I did get the permission to do so by the person who wrote it to me. Why do people in this world choose to cover up the real truth behind childhood cancer? Is it because they are too scared to tell the truth? Is it because they are in such denial? Is it because it is easier to be vocal about this if you are sweet and everything is pretty little rainbows and puppy dogs? Is it because they don’t have the strength to tell the truth? That is so unfair. This is only hurting the world of childhood cancer. Childhood cancer is NOT happy kids with sweet shiny bald heads and brave smiles. Childhood cancer is NOT something that is given to kids because they are strong enough to handle it. Childhood cancer is NOT sunshine and love. Childhood cancer is scary. Childhood cancer is dark. Childhood cancers ruins families and lives. It is probably one of the most stressful, heart wrenching things in the world. The way childhood cancer is portrayed, is not accurate. I know what childhood cancer is. I think I’ve been very vocal about it. I don’t think I’ve sugar-coated much and I never will. People need to know the truth about what this disease does, so maybe it will open everyone’s eyes about how these kids are being beaten, battered, bruised, and murdered over and over again. It’s like child abuse, only everyone is fucking o.k. with it. Why is that? Because the reality of what is really going on, is too much to look at? That is such bullshit. If more people were upset about this, being vocal about this, and would stop looking the other way, maybe things would change. The treatments for childhood cancer are barbaric. The treatments for childhood cancer, if one does survive, do so much damage to the child, that life is difficult and hard. And this is acceptable, why? I will NEVER understand why these kids are not the one’s who are getting the most funding/research/attention. If I had the choice to save myself from some awful cancer at 50 years old, or the life of a child, I would choose the child, hands fucking down. And great that the White House is fucking pink for Breast Cancer Awareness this month. Where the fuck is the Gold for last month? I’m sorry, but the color pink makes me want to throw up. Give these little girls a fucking chance to grow up and get breast cancer. Everything is backwards and I don’t understand why. I watched as cancer took my most beautiful boy, and ate him alive. It is doing this to kids every single day and nobody seems to care.

Back to the email that I got. I read it. I was in bed. It was kind of late at night. I read it twice and started sobbing. I know everything you went through, Ronan. I know everything you went through and it wasn’t half as much as these other kids. Do you remember Ty? I’ll never forget him. He was so sick. We bought him a superhero cape. He gave you a gun. He’s not doing so well, Ro. This is eating me alive. I think I know what is coming next and there is nothing I can do. I can’t do the one and only thing, I know his mama wants. Tomorrow is her birthday. Her wish is for everyone to know about Ty. I think I can help with that. It’s the least I can do. This is from Super Ty’s mama.

Maya.  Why didn’t we talk when our boys roomed together at Memorial Sloan Kettering?  I regret that, because we should have connected.  I am not very outgoing, but we would have been fast friends nonetheless.  I spent an entire day getting to know your mom, but I can’t imagine why you and I never shared more than polite exchanges.  Oh yeah, now I know, because we were living in pure misery and probably too distracted by Ronan’s “asspole” to concentrate 🙂
We shared a room in April of 2011.  Your mom told me how you have a blog about Ronan.  At night, I remember we both typed under dim lights into the late hours, updating everyone on how our little boys were doing.  Ronan was diagnosed the same exact time as my son, Ty Louis Campbell.  He’s only five months older than Ty.  We gave him a gun, you gave us a superhero cape for Ty.  My husband and I talked about Ronan and his incredibly fun spirit so often (we still talk about him all the time).  That little boy laughed while bathing with his star wars and he had the most adorable laugh.  Ty was so, so sick… we were envious of you.  We couldn’t wait until Ty was a funloving baldie like Ronan, walking the halls and shooting at nurses.  We got a kick out of that, and we know Ty would have too if he was feeling better.
I remember Ronan looking into my eyes and feeling like he knew something we don’t.  Now I know why.  Look at all of the amazing things he has done!
It was several weeks later that I randomly thought to check on you out of nowhere.  I googled your website and was completely floored when I read the title of your post “Where’s Ronan?”  My heart was crushed, my soul deflated and my mind throbbed in pain over the tragic loss of your beautiful boy, and the immense fear for my own child fighting the same disgusting beast.  I check in on your family sometimes and I always find your words to coincide with everything I am feeling – thank you.  I love you and all you are doing.  It is so f-ing perfect that Taylor Swift found Ronan.  He is MOVING MOUNTAINS.  I am so excited.  I want to tell you that you are amazing, but I know you will just think that it’s not you but Ronan who is doing all this.  Ronan who is amazing (and I would wholeheartedly agree).
Ty was sent home on hospice care a week ago.  I don’t think I will survive, but then I think about you and I know that I will (even though I don’t want to) and it won’t be pretty.  I wrote you once before when my husband ran the NYC marathon for Fred’s Team.  He wore Ronan’s name on one arm, and another boy, Tanner, on the other.
I am going on and on, and I don’t mean to.  I am trying to contact you again for two reasons and I can only imagine how bombarded you must be so I wanted to give you enough background.  First, I just want to tell you how much your writing helps all of us who are going through this painful, tragic life of a cancer mom.  To tell you how much I love what you’ve done for Ronan.  And, to tell you how much I love Ronan.
The other reason is about the media, and I hope it makes sense through my rambling…
I can’t stop thinking about how you are really doing it… how you are really making a difference.  I am excited!  I am a huge believer in all things rockstar ronan!  I believe that YOU have brought this fight to a turning point, and that childhood cancer awareness is going to blow up thanks to you and your beautiful boy.  I can’t wait to see what’s next!  On that note, I have a request that revolves around your mission to share the horrors of childhood cancer.  Ty’s fight against cancer was/is reallybad.  I know every kid’s fight is really bad, but Ty had 27 surgeries in 2 years.  He had meningitis three times because of chemo.  He hasn’t been able to walk for two years.  He was on high dose steroids that destroyed him.  He had 45 rounds of radiation treatments to the brain where his head was bolted down to a table every day.  He had only four fairly healthy months in over two years of treatment (August – December 2011) when he almost walked again, but then he suffered a post-radiation brain bleed that paralyzed the left side of his body.  That terrible blow was followed by necrosis to the brainstem a couple months later that made his entire body paralyzed from the neck down so he can’t sit up or move his arms or feed himself anymore.  We went to a hyperbaric oxygen chamber every day for 2 hours a day all summer.  He endured 60 of those treatments.  Now we’re told that his cancer returned and he is going to die soon.  I always believed that he was suffering so much because we will all get the greatest reward.  That he would get better.  That our love and determination would prevent the other shoe from dropping.  We suspended that bitch in mid-air for a long time… but she eventually hit the ground, hard.
I’m telling you this because I hope that you can build the horrors of what kids go through into your messages about childhood cancer.  You are our voice, our amazing vehicle to spread the word and I am so proud of you.  Awareness should focus on how many children are diagnosed, how many die so unfairly, but also how incredibly f-ed up the treatment options are for children.  They physically destroyed my perfect baby with the golden curls.  The medicine DESTROYED HIM just as much as the cancer did.  He has been robbed of his quality of life for so long.  How is it possible that there has been only ONE NEW DRUG approved for children?  I know you know all of this.  I just want to share Ty’s suffering so you can talk about the level of sheer hell these kids can go through at such a young, innocent age.
Forgive me for bombarding you like this.  I am a PR and marketing professional (I was) so I guess it is my nature to do this.  I just know you are going to do amazing things, and I see kinder, gentler treatment options THAT FUCKING WORK for our children in the future.  Thank you so much for taking the time to read this.  I hope to hear from you some day.
Love,
Cindy Campbell
Do you want to know what my response was? It was this. My words were nothing of comfort. Words of comfort do not exist in a situation like this.
Cindy,
I’ve been checking in on you guys. I wasn’t sure how to get your email address to write. I cannot even form words to write now as I am sobbing. I don’t have any words of comfort. If I did, they would be lies. The cold feet. I’ll never forget the cold feet. I’m so sorry. I wish I had something more to say. If I had Ronan here again one last time, I would have held him more after he passed away. I didn’t hold him after he left. I kissed him. I bathed him. I dressed him. But I didn’t hold him. I didn’t know I could. Please hold Ty.
Do you see why I am so angry at the world of cute little happy bald kids? Because it is a lie and the treatments for these kids, are a JOKE. It’s like saying, let’s lock your kid up in a torture chamber and hope for the best. UNFUCKINGACCEPTABLE. I am on a rant tonight and it is well deserved. Next year, that White House better be lit up GOLD for the month of September. Add it to my list of things to do.
Today, was just an o.k. day, Ro. I might be lying. Today, was not a good day. I’m still so sick so I am dealing with that. I also feel like I have the weight of the world, on my shoulders. I am doing a lot. Trying my best to navigate everything that is coming my way. Who’s intentions are true and who’s are not? I feel like I am being pushed and pulled in a thousand different directions. Your daddy came home to me in bed, with the covers pulled up over my head. I was so wiped out from the day and so tired. I may have said some things like, “I don’t want this baby. I just want Ro.” Things that I know I don’t mean, but all I could do was lay in bed and cry and stare at your pictures on my iPhone. Please come back, Ronan. Please, why did you have to leave me?  It’s not fair. It’s not right. I wish people would stop telling me things like “God only takes the best.” That is not true. It might be the stupidest thing I have ever heard. I am surround by the BEST people on the planet, so why aren’t they all dying, left and right? Somebody explain that one to me. I never wanted this job, Ronan. But I am left on this earth with so much anger/fire/passion/love for you, that I WILL change all of this. I always think about Liam and Quinn. You can mark my words, when they have kids, and god forbid one of them gets cancer… things will be better. The survival rates, treatments, and outcomes. Our future, deserves better. I couldn’t save you, but you can be damn fucking sure I am going to save the others that will go through this. How as a mother, could I even look myself in the mirror if I did not do something? That would be such a slap in the face, to you and our family.
I am going to end this tonight. Please, everyone help me make Ty’s mom’s wish come true. Please go and check out his story. He has been though so much. He is such a fighter. I only wish it was in the way where he was a healthy boy, fighting off monsters, dragons and bad guys. Not cancer.
Oh, and hey cancer. Fuck you.
Goodnight, Ronan. Sweet dreams. I miss you. I love you. I hope you are safe.
xoxo