A Rebel with a Cause and A Death Hike

Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.

I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.

Pediatric Cancers:

Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers

There has not been a significant breakthrough in the deadliest childhood cancers in 30 years

One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers

Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials

Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.

The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable

In today’s clinical research landscape, progress is too slow and promise too rare

Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)

Basic research generally receives more funding than translational or clinical research

Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone

Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries

Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas

Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer

Conventional nonprofit organizations are not necessarily designed to progress therapeutic development

Parents are forced to become experts in their child’s treatment

With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can

To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer

Children need help now

You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.

Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.

So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.

I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.

So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.

25 thoughts on “A Rebel with a Cause and A Death Hike”

  1. I was listening to ‘Ours’ on the way home from work today…I thought of you. Keep going mama- you are moving mountains! xo

  2. I think it’s disgusting that less than 1% of funding goes to childhood cancer research. I hope more people will get involved in this cause and speak up for the kids that can’t anymore. It cannot just be the parents, or nothing will ever change. For everyone that reads this blog, you can’t say you didn’t know. Knowledge is power. Share your knowledge and do the right thing!

  3. Yes, YOU ARE STRONG!! Gad Damn, I am loving Mr Bret Michaels even more these days…….what a true rockstar!

    Love to you as always Maya


  4. Mama Maya,

    So glad you made it safely down that mountain in the pitch dark. I’m sure Ro was leading the way. Your blue eyed spicy monkey was right there beside toy! Making sure his mama was safe!!

    Keep rockin’
    Thinking of you and Rockstar Ro!!!always Ro!!!

  5. Interesting statistics – and YES – it is so TRUE that the drug companies don’t want to cure cancer! I am currently living in France for my husband’s job (lived in Tempe) and I met a woman who moved to Toulouse France because she had cancer (found out in the States) and started a different treatment here because the stupid FDA won’t approve cancer drugs. She is free and clear now and has been for 12 or so years. Unbelievable.
    PS – download the free flashlight app for your iphone – it works great! 😉

  6. Thinking of you always. Glad you made it down the mountain. Thanks for all the knowledge, I’m glad you are there to get the fire going to help find some cures and make it a better world for our children.

  7. WOW, that’s a beautiful photo but scary! I’ve done that once myself, never again! Glad you’re okay! I hope you have a good day today- thinking of you and Ro always, xoxo. And that Bret Michael’s-AWESOME guy! I can’t wait to see all that you guys will do to make a change and keep Ronan’s memory alive! Much love to you today Miss “Rebel with a cause Maya”! 🙂

  8. I’m so glad you are taking on this cause! It is disgraceful, and it does seem like drug companies are not trying to cure cancer. Well, Fuck them too–Rockstar Ronan and Maya are here! You’re going to do it; you are doing it! Keep up the amazing work!

  9. Maya, love Bret Michaels! I am absolutely in amazement that not enough is being done for childhood cancer and no real progress has been made in treatments. Heartbreaking to read…and impossible to ignore. I hope everyone who reads your post spreads the word and raises awareness to these horrifying statistics…
    From your last couple of posts, I sense the glimmer of hope, strength and purpose you are starting to feel. That is Ronan with you every step of this journey. Much much love to you, if anyone can make a difference in childhood cancer, I know it will be you.

  10. Thank you Maya for sharing the aweful truth to us about the facts but yes it is the TRUTH and it is ugly. I am so thankful for all you do. You are a fighter and a Rebel and you and Ronan are going to change all of this with the help of all of us who now are aware. I am a mother of three and I never knew these facts sick I know. I should but I am a dummy like most so Thank you Thank you. And we will all continue to fight with you to end this horrible disease. Thank you Bret for caring!! You are AMAZING and truly inspiring Maya.

  11. Thank you Maya, you move me so much. You are such an enormously beautiful mother with a love for your boys that brings back my hope in humanity. Your epiphany of the beauty on the dark mountain and it’s mirror in your soul-wow! Just beautiful. And your strength in fighting this fight against that horrible dark ugly FUCKING cancer-also wow! I understand your motivation deeply and that praise is NOT your goal, but you are absolutely an amazing mamma! Motherhood is the heart of this world, of mine anyway-nothing more important or significant in my eyes. And you are just at the top! I will ALWAYS see those beautiful blue eyes of Ronan’s in my mind, ALWAYS. I will have to close my eyes and imagine him playing, being spicy, or reaching out for one of those precious, trepidous little hugs kids sometimes give to a new friend they like. Hopefully, someday, I can get a little one from his mamma in his place. You are doing such awesome, amazing things for the world, Maya-may the force be forever with you!

  12. I am so glad that you made it back from your hike and that Bret Michaels called you. You and Ronan are going to change the world.

    Those statistics are not acceptable. As a parent I am scared about what could happen to the 2 children I still have here with me. I wish at times that I could wrap them up in bubble wrap. Fuck you cancer! Take care Maya.

  13. Maya, You inspire me every day. I am already researching ways I can help out. I am furious after reading this! My life is surrounded by sweet little faces (I’m a teacher and a mom) and I will not watch another beautiful young face be taken away by this disease. I am ready and my gloves are on. Watch out cancer, I’m coming after you!!

  14. Why aren’t the schools taking a more pro active roll on educating our kids with awareness?

    Please, please tell me what I can do Maya. As a teacher I need something to do to help because I am terrified/sad/shocked about the statistics. How do I get on board with the awareness? I just don’t know where to start. I have already shared your blog, but I need something more. There is nothing out there for teachers to do help childhood cancer. We do crappy food drives, toy drives, etc.

  15. My comment posted before I was done. Stupid return key. Please let me know what I can do. I can’t do something stupid like a 5k, it needs to be way bigger.

  16. maya…it isn’t that you CAN do this. You ARE doing it. I know you will keep doing it too. Keep going, Mama. I am sure it is unbearable, but you..YOU, Ronan, and your whole family are raising awareness, helping families, and saving children.

    My brother is a PhD and is a researcher for a major pharm. corporation. I am going to ask for more details when I see him next week. I find it disgusting that we have made almost no advancements in the treatment of childhood cancer.

  17. I never comment on blogs, nor did I know Ronan’s story until today. As a mother of two young boys 3 and 4 I’m beyond pissed. I hate to say I had no idea the extent of absolute Ill repair treatment for pediatric cancer is in. Ronan is an inspiration, your family is a inspiration and you are a miracle for all the small voices that can’t speak for themselves.

  18. Every time I read your blog I cry. I get so angry. So fed up. Just so tired of people NOT paying attention. I just want people to pay attention. You inspire me to move mountains. You inspire me to be a better mother to my two little girls. You amaze me with your strength and heart through all of this. You inspire me to be AMAZING and to make everyone around me want to be the best they can be. I yelled at a safeway clerk in october. They had a huge raffle going on for breast cancer. Which dont get me wrong, its an important cause to raise awareness for. But it ALREADY HAS so much awareness. You know what they did in September? NOTHING. I just wanted to punch someone. PLEASE keep doing the INCREDIBLE things that you are doing. I know its hard sometimes, but please dont give up. because I have the greatest feeling about you. And I KNOW that you are going to make a difference. For Ro. For your family. And for every child out there that has cancer. We WILL make people pay attention. Thank you so much Maya. FUCK CANCER!!!!!!!!!!!

  19. Maya, usually when I comment, I don’t comment on your music, but Ours is one of the perfect songs for you and Ro. That and Red and Ronan, of course! God bless Ronan, you, and the amazing Taylor Swift! ~Isabelle ❤

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