Dear Empire State Building, Part 3

Ronan, before he was diagnosed.

Ronan, before he was diagnosed.

 

 

Dear Empire State Building,
My name is Payton. I am fifteen, almost sixteen. I have never been in the hospital. I do not have cancer. None of the people close to me have cancer. Still, I am a pediatric cancer advocate. I read the blog of Maya Thompson after I heard Taylor Swift’s song Ronan. This soon led to multiple children on Facebook, who I look for on my newsfeed everyday. One of these children is Lilly Bumpus. She’s a beautiful toddler, in remission. She suffers from side effects of the 75% adult strength chemo she was given. Seizures and tics, with no explanation. She has night terrors, about people coming in and waking her up in the middle of the night to check her vital signs.

I’m writing this from a hospital bed, as my appendix was just removed. So I can understand how the nighttime checks could scare someone so young. What just happened to me is nothing. Nothing, compared to what so many children go through. They live with IV needles and ports and constant pain. I don’t know if you’ve ever had to leave a needle in your vein for a long time, but it sucks. These children go through surgery and chemo, radiation and clinical trials. While we, as people who understand how horrible this disease is, fight for awareness, these kids, teenagers, and babies fight for their lives. In the US, 7 of them lose everyday. 46 are signed up to fight. Families are forced into this battle, for their kids. I cannot even imagine life without my little sister. Some of those siblings, whose brothers and sisters you refuse to represent, know what that life is like.

Maya Thompson’s older sons learned that at 8 years old. When his 1 year old sister got a black eye in a baby tumble, one of these boys asked his mom if baby Poppy was going to die. An 11 year old. Because he watched as cancer took his 3 year old brother. No child should ever have to fight cancer, no parent should ever have to lose a child to cancer, no sibling should ever have to watch this disease take their brother or sister. You don’t need to know someone closely. You just have to look around and realize how wrong these kids’ situation is. You just have to want to help them. To tell everyone, “pediatric cancer is wrongly underfunded, and we need awareness, so we can save these kids.”

Some people are pulled into this fight for their loved ones,and to make sure it never happens to someone else’s, but I fight for all of them. For Ronan and Lilly, Paxton and Mateo, Ellie and Alyna. I want you to light up gold, so in the future, Babies like Alyna, toddlers like Ro, and teens like Talia won’t die. So Lilly and Kaitlin and so many others can stay in remission. And Mateo and Ellie and every other kid facing cancer can win. Childhood cance is wrong. You don’t have to experience that to know it’s true.

 

Please light up gold,
Payton

It will always be Maya and Woody or Woody and Maya

My feelings have been getting hurt a lot over things lately. Things that normally wouldn’t bother me, but they do now. I’ve been struggling with all of these new feelings and have felt guilty  thinking I was being selfish and mean for having them. I now know that these feelings are normal because of what we are going through. I found a guideline today while reading the online handbook. It made me feel as if maybe I am not losing my mind. If anything, I am more in tune with what is the appropriate way to act when handling our situation. Most people do it with such grace and ease…. some not so much. I wish I was more “guy like” and could just brush certain things off. I’m not that way at all. I sit and think about things too much and it is a waste of time and energy. I’ve got to let some things go and spend time on things that are important to me now. I can’t be dealing with other B.S. That’s all I’m saying about that because as I said before, it’s not worth my time and energy. I know what is true and what is not.

Today, I got a call from one of our nurses, “A.” Yes, that is really what she is called. Her real name is something else, but she has been called just “A,” ever since she was about 4 years old. She called to tell me they have set up Ronan’s scans. His first one will be this Thursday and his second one will be next Thursday. My stomach dropped just hearing that they are set up. I know I have been waiting for this but I feel like the not knowing part is almost easier at this point. It’s like I am in a protective bubble and when those scan results come back, it’s going to pop. We are hoping that the results will show that the shrinkage of his tumor  is about 20-25%. We are praying and praying hard. What we are doing has to be working. Ronan will have to be put under with anesthesia both days. I hate that part but I know Dr. Maze will take good care of my little seal. He won’t let anything happen to him so that makes me worry a little less.

Tonight, Woody and I were able to get out for a few hours. We went to meet our friends, Kenny and Stacy Frakes for dinner. As we were walking to AZ88, holding hands… I closed my eyes for just a second, took a deep breath, and pretended that we were on one of our normal weekly dates that we used to have and that none of this was happening to us. It was just Maya and Woody and nothing else mattered or existed. For those 10 seconds, I felt such bliss and happiness. I felt connected with my husband and it felt really good. We met our friends, who we have not been out with on a double date with in a good 5 years. Which is so sad. Another one of those times in your life where you get too busy and always say you are going to meet up and never do. What a waste of years without good company. Kenny and Stacy are the kind of friends where 5 years can go by without seeing them and then 5 years later you meet up and pick right back up where you left off. Woody and I had the best time with them tonight. We got to act like a couple again and enjoy being out with our friends. We talked about everything from Ronan to Bob Dylan. Tonight was an absolute joy in every way. I also love that Kenny and Stacy are not the kind of friends who run away and disappear after something like this happens. If anything, it made them want to see us more because they truly care and love us. We knew them before were married, and have always held them close to our hearts. I am so glad Ken got in touch with Woody and we set something up. It was so healthy for us to do something like that. I actually saw Woody enjoying himself tonight. I have not seen that side of him in 7 weeks. It was beautiful, refreshing, and made me all warm and fuzzy inside. We need to take time to do things like that more often. I was not ready before… but I feel like I am now. Woody and I are the foundation of our family. We have to love, cherish, and take time for each other. We are going to try harder to work on that. This won’t break us or our family.

My inspiration

Busy little bee

My day started at 5 a.m. this morning. That is usually not a big deal but seeing how I didn’t get to sleep until 3 a.m…. I am surprised I am still awake right now. 2 hours of sleep is hard to get by on. Ronan had an eye check-up at 7:30 a.m. which meant we had to leave the house at 6:45 to allow enough time to get to Dr. Cassidy’s office. He is far away from us and I wanted to be a little early so we could sneak into the office without any other patients there. Mission accomplished. Ronan was not happy about getting up so early, but I talked him into it. We met with Dr. Cassidy and he did Ronan’s eye exam to see how his  eye was recovering after his surgery on his left orbit. He was afraid that it might be weaker than his right eye and he had talked about patching his right eye to give his left eye the strength it needed to catch up. After his exam he decided that he was very pleased with what he was seeing, and so far thinks that Ronan has no damage to his eye! That is great news for our little guy! One less thing to have to deal with! We left the eye appointment, headed to pick up my mom, and then went off to the clinic for our Monday exam. They did his blood work and all of his counts looked really good. His ANC counts(his immune system levels) were in the 6,000’s so we get to take a little break from his Neupogen shots. Woody was so happy about that. Giving Ronan those shots has not gotten any easier on us or him. He HATES them and we hate giving him them. Our plan is to start his stem cell harvest on Monday, assuming his counts are still climbing. We will pray that his immune system keeps going though the roof! After we left the clinic we came home and had lunch.

My friend Jen came over to help me work on a few things for the tee shirts and for Ronan’s Foundation. I am so excited about all the things that we have in store for The Ronan Thompson Foundation. This is a way for us to give back to something greater than Ronan. My hopes are to raise so much money that we can donate it to Neuroblastoma research for a cure, add a wing to Phoenix Children’s Hospital, and hopefully help many family’s who are going through something like this, but may not have the support system or strength that we do. I want to give to people in times of need, a glimmer of hope and strength. When Ronan beats this ugly disease, our fundraisers will continue for the rest of our lives. I was just telling my mom tonight that I can’t wait for the day that Ronan is better, and we have organized a run in his honor. Every year, we do the Pat Tillman run here. It is a tradition of ours and I can’t wait for the day that we have the “Ronan’s Run.” His Foundation is something that I will work on for the rest of my life. It is now a full time job and I am so passionate about all of it. As I said before, this is my calling in life and it is what I was meant to do. And I do everything 110% so I know it is going to make huge difference in the world.

I talked to Charisma today for quite a while. It was so moving to hear her voice and listen to her talk about her experience with the Rally for a Cure. She had the most beautiful things to say about the kids who were there, about how it made her feel, how Ronan is going to be fine, and how she is going to work to make a difference. She said she always had it in the back of her mind to use her celebrity status for charity purposes…. but she never really had something she was super passionate about; until now. There was a reason that she didn’t just pick a charity… it is because Ronan was going to need her all along. I was going to need her all along. I think that is very telling of the kind of person she is. Any celebrity can put their  name on something… it makes them look good. Charisma is the kind of person who does good things when nobody is looking.

Having my mom here has allowed me to get caught up on a bunch of things today. I have not stopped until I sat down to write this blog tonight. Woody and I were supposed to go on a date…but we are both so tired we just decided to stay in. We have plans to go to dinner tomorrow night with some friends we haven’t seen in a very long time. I am really looking forward to that. Goodnight, sweet dreams, and blessings to you all!

I also wanted to say a special thank you to everyone who came out in my hometown to support Ronan. I wish I could give you all a big hug for believing in my child. Next year I know my little guy is going to be the one handing out the trophy to someone else! A very special thanks to Kim Walters for working so hard on everything and making Ronan the poster child for hope! I am so lucky to have been raised in such a loving community<3

To everyone who would like a Rockstar Ronan shirt…

Please email me at:

rockstarronan@gmail.com

First come, first serve as they are going fast. We will be printing more soon.

RockStarRonan Tee’s

Raglan (Baseball) Tee’s – Unisex Youth sizes: medium & large Adult sizes: small – xxl
White Ladies Tee Adult sizes: small – xl

Thanks for your support!!

Ronan has a Facebook page!

If you are on Facebook, search for Rockstar Ronan. I have created a page for him!! Thanks!!

The face of an angel

I’m not sure how much I’ll be able to write tonight. My husband says he does not have a wife anymore… he has a blogger. He needs me to spend some time with him. I will just say that today we had a great day. My mom is here and I know that I made the right decision on making her wait to come out and see us. She is stronger now and Ronan is stronger as well. Having her here is the perfect timing. She gets to see her sweet baby grandchild while he is feeling great. That is exactly what I wanted. I took Ronan out for his first time in 7 weeks. We went to Yogurtland and sat outside with Liam, Quinn, my mom, Gay, Chet, and Cal (Liam and Quinn’s buddies) Ronan was practically glowing. He was so happy to be out and with his brothers and friends. We sat outside on this beautiful AZ night and the boys played and giggled. I’m going to talk to the doctors tomorrow about Ronan being around other kids. Taking his childhood away from him is just not fair. He needs to be around other kids. Of course I had out the hand sanitizer every 5 minutes, but that’s o.k. At least he was out:) It was exactly what he needed.

My friend, Charisma, got back from Toronto today. She sent me a really beautiful email about her experience and I wanted to share. Instead of blogging a bunch tonight, I thought I would share a couple of things. Here is a little bit of what Charisma experienced.

Maya,
I thought this trip to fundraise would be so heart breaking and sad- which was ok, I was ready for it. But you’re never ready to see kids fight so hard for their right to live. However, they inspired me so much!

A Dr. spoke at the gala dinner last night. He’s a Doctor from “Sickkids Hospital” in Toronto.
He said fund-raising equals life. (- whoa! ) He also said, “There is a cure.” There are new drugs out there to develop that can trick cancer cells from multiplying by getting the cancer cell to kill itself. 5 of his former patients are either; in residency, the lab or med school. By the time these kids finish school, there will be a cure. “This time” he said, ” it’s personal”
The beauty of the story is, kids weren’t surviving before. In the 80’s (?)there was a 5 percent survival rate for pediatric cancer patients. Now its 80 percent due to funding and awareness. There is HOPE! A little girl shared her story her survival of cancer. She said when my grandpa was in med school and if I had been diagnosed then, I would have died. But now, I live to see another day. ( Her grandpa discovered her illness) uh! So brave! So clear , so inspiring. And she’s not even 13 yet.

I know Ronan will make it! I just am sure of it. He will win and he will have changed lives by just being him. A fighter! A spunky little man with just the right amount of angel to stare cancer down!
I talk about Ronan to everyone I can. I talk about his bright eyes. I was on the plane home with Robin Antin from the Pussy Cat Dolls I told her to tweet about you and send her peeps to your blog. Hopefully she’ll do it. Other pediatric cancer patients are lucky a child with such a face has cancer. Unfortunately or fortunately, he will motivate more people to do more and give more because of his good looks. -And that’s ok. Its more meaningful to be the poster child for pediatric Cancer than the Gap. Yes? ( Not that you asked for that, Maya. No one wants their kid to be ill. – I hope you can see the silver lining in what I’m trying to articulate, a bit poorly.)
None the less, I read your blog every day, every post. I want to buy a Tee! A few! Do you have any left?
That’s all. Love to you!
Charisma

Charisma is inspired, and moved, and is getting her wake up call in life. She now knows helping with childhood cancer awareness is something that she is going to be part of, for the rest of her life. She knows this because she looks at her beautiful little boy, Donovan, and knows it can happen to anyone. There needs to be more funding, more hope, and a cure. Charisma loves Ronan and loves us and is part of our army of angels. I know she hugs Donovan a little more tightly at night and I am so glad I can give her that gift. Even through all of my pain, it is worth it to me.

My last little thought is a comment on my blog that brought me to tears tonight. It’s from somebody that I don’t even know, but it really moved me. I would like to share that as well. Here it is below:

I have always been a believer that everything happens for a reason-no matter how small and seemingly insignificant-and that eventually the meanings for your actions become clear. That being said, the other day while in line at the grocery store, I picked up a copy of Us Weekly. While skimming I read that Tori Spelling had set up a Twitter account for her son and ended up adding him, Tori and then Denise Richards on Twitter.(I promise this is all relevant.) I do not read “Trashmags” and I log on to Twitter every once in a blue moon, so I really do believe this is special. Moments after I added Demise she tweeted something about 20k reason why and a link. I was intrigued and opened to find a fan page to get Oprah to do a show on Childhood Cancer. I began reading posts and looking at pictures of children who had lot their fight and whose parents simply wanted them to be “seen.” I fell asleep crying and in the rush of the past two days, completely forgot about it…

Today I went looking for my mothers blog, and happened onto the wrong one. It was one about mothers being better mothers before they were mothers. I skimmed and scrolled down to the comments where I saw a comment that said, “If you want to learn a thing or two about being a mother, read this blog.” I clicked through to find a beautiful little boy staring back at me-your army boy Ronan. I sat for about 2 hours and read this blog from start to today. I cried happy tears and sad tears and I laughed and sighed and felt your pain. In 2 hours I felt like I knew you, Ronan, Woody, Quinn, Liam, Mimi Kay, Lindsey, Winston, everyone. I was transferred into your heartbreaking and miraculous world. I would just like you to know that I am here. Both with you and for you and don’t hesitate to email if you just need to vent. I live on the East Coast, in CT. But I hope someday I will be able to meet you and your beautiful little fighter.

Love, hugs and prayers,
Cassidy

So, Cassidy… I just wanted to say thank you for this. Your email really touched me. It gives me strength to see that good things are coming from this heartbreaking journey we are on. It brings me joy to know that Ronan’s story is making a difference in people’s lives. He is the most special little boy and is going to win this fight for all of the other kids out there. He is strong enough to take this on and give others hope in their darkest hours. I, as his mother am his biggest advocate, and he inspires me everyday. He inspires me to work harder, be kinder, love stronger, and never give up. It is through his eyes that I see our battle being won. He is worth every ounce of blood, sweat and tears that comes from this. I will never give up hope and I will never stop fighting for all the children that also have to endure this kind of pain. If anything, I just want the people reading our journey to be the best parents they can possibly be to their kids. A child is the most precious thing on earth and if you are lucky enough to have kids who are healthy… please don’t ever take that for granted. You have no idea how lucky you are.

That is all tonight. My husband is giving me the death stare ;) Goodnight and sweet dreams to you all!!!

Family, friends, love and laughter

Tonight was one of the best nights I’ve had in a very long time. My heart is so full of love that I feel like it could explode! The Diamondbacks game was a huge success and I heard the tickets that were sold for our foundation almost SOLD OUT! Thank you all so much for coming and for those who could not come but still bought tickets to support Ronan. A huge thanks to Becky for coordinating everything, giving us an awesome tour, and making sure we were all taken care of. I am so happy I finally got to meet you. I smiled, laughed and cried tonight and it all felt good!

I finally got the chance to meet a very special young man, Will and his mother. I have heard about Will since day one of Ronan being diagnosed. Dr. Wood spoke of him very early on. Will is a Neuroblastoma survivor and is 18 now. I was soo honored to finally meet them; I have been dreaming about this day for a very long time. I talked with them for a bit and completely broke down and the tears came pouring out. They were tears of happiness, sadness, and hope. So much hope. Will is a beautiful boy and I can tell he is much wiser than other kids his age. He’s got a twinkle in his eye like he has a secret. Maybe someday he will share that secret with Ronan. I know that Will and his family will forever be a part of our lives and I can’t wait to get to know them better and to introduce Ronan to them.

The kids had a blast at the game. Woody and Liam didn’t make it which I was sad about. They planned on coming but then got tied up at home with Ronan having a bloody nose. It turned out to be fine, but by the time they were ready to head over to the ballpark, the ASU game was getting ready to start. You know our loyalty to those Sundevils… nothing gets in the way of that:) They headed to the football game instead. I think Quinn had enough fun for the both him and Liam though. I really enjoyed being surrounded by all of my friends’ kids tonight. I saw Quinn laugh and giggle more than I have seen him do in a very long time. Those Willits’ boys know how to have a good time. With parents like theirs, it’s easy to see where they get it from. Thank you Gay and Barry for bringing your 3 beautiful boys and supporting and loving us. Everything is so much more fun when you all are involved:) I wish I would have taken more pictures tonight. I was so caught up in the moment that I forgot. Tonight I needed to relax and let go just a bit and that is just what I did. We sold a lot of shirts at the game! Mainly to friends and family. My friend Jen and I went down into the lower 100 level to see some of my other girlfriends who were sitting down there. Lauren, Heidi, and Christy and their kiddos had a section to themselves so we joined them for a bit. Jen and I made quite a stir with our huge bag full of tee shirts. Soon, strangers were asking what they were for. I used my strongest voice possible and told them they were for my son’s Foundation and he has cancer. The man behind us bought one instantly for his wife. The woman two rows back wanted to know how much they were and when we told her 20 dollars, she said she would like to have one, but couldn’t really afford it. 5 minutes later she said she changed her mind, because it was for such a good cause and handed us a 20 dollar bill. The woman next to her only had 10 bucks and said she didn’t need a shirt but wanted to just donate it to him. I instantly started BAWLING. And not the kind of cute cry where the tears just innocently roll down your cheeks, but the kind of bawling where you are a total mess and can’t stop. Thank goodness I was surrounded by my friends. They hugged me, kissed me, loved me and Christy even came and sat on my lap and fed me peanuts:) I think it was the kindness of the strangers that did it. They don’t even know Ronan, but they know he is worth fighting for and they are willing to fight for him. I hope these people tonight are blessed with many things in their lives. I truly believe in good karma. I know it exists and someday, they will be repaid.

After the game, Jen, Ashley and I headed to Chelsea’s Kitchen for some dinner. We were starved and Chelsea’s is my favorite neighborhood place to go. We had to wait about 30 minutes for a table so we sat outside and just enjoyed it. We watched Ashley(who is 7) do back bends in the grass, pick flowers, and play in the fountain. We quietly talked about the present time and the future. I have known Jen since the 8th grade. She was a year older than me in school and I have always worshiped the ground she walked on. She is smart, athletic, funny, beautiful, and someone who tells it like it is. I LOVE people like that. She just moved back here about 5 months ago and I now know that someone put her back here with me for a reason. She was meant to help me during this roller coaster of a ride. She is someone who you can put in charge of something, and it gets done, no questions asked. And if anyone knows how to get things done, it’s Jen. Plus, she makes me laugh like no other. I feel like we have connected souls and being around her always makes me feel at peace. She has a calming effect on me. I don’t feel that way around many people these days, but with her it is always there. After dinner we walked out to the valet to get our car. The cute 18-year-old boy who went to open my door saw that all 3 of us were wearing matching shirts. He goes, “You all have matching shirts. Do you mind if I ask what they are for?” Now, because of the rawness of my situation, and the core age group of my target audience which is usually parents and grandparents, I guess I wasn’t quite prepared on how to answer this question to an 18-year-old valet boy. So, I just blurted out my normal answer which is, “It’s the Foundation for my 3-year-old son who has cancer.” He then responded, “Oh, well that’s cool. Good luck with that.” Bless his heart. Jen and I were hysterical once we got into the car. Not only was his response priceless but it reminded us of one of my favorite skits on Saturday Night Live called Debbie Dower. If you don’ t know what I’m referring to, you really should Google it and watch it for a laugh. Basically there is this girl, Debbie, who is always the downer of the party. Whenever her friends take her out or have her over for a good time she ruins it by telling awful stories the entire episode. They play this wah wah type of music throughout the skit and it has always cracked me up. I was totally Debbie Downer to that 18-year-old valet kid. I swear I could hear the music playing in the background during our conversation. It was worth it though because we cracked up about it almost the entire way home. Ahhh the little things in life:)

I came home to a sweet Ronan and even sweeter Karen all cuddled up on my couch. It melts my heart to see those two together. Thank you Karen for taking such precious care of my little guy so I could go out and celebrate him and his amazing fight. He is sleeping peacefully next to me and I am going to whisper sweet nothings in his ear about all the people who love him. Friends, family, and strangers. Thank you again, to all of you. Thank you for loving us, believing in us and supporting us. We will forever be grateful for all of you. Goodnight and blessings to you all!!

Change of plans!

Come see us in section 310 Row 5 seats 5-13! Thanks! Sorry for the late coordination!!

  • Instagram is my BFF

    There was an error retrieving images from Instagram. An attempt will be remade in a few minutes.

Follow

Get every new post delivered to your Inbox.

Join 24,030 other followers

%d bloggers like this: