Nothing like some hometown love to kick cancer’s ass


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Ronan. I don’t remember the last time I’ve written to you and I don’t like that. My days are so consumed with trying to be the best mama to your brothers and sister. This means no computer time, only a little time is spent posting the never ending cute little Poppy pics on Instagram as my way of trying to keep up with all of your lovies out there. They seem to be growing by the day and that makes me so proud. My nights have been spent writing and working on this book. My nights have been spent writing accompanied by hot flashes and puking over the toilet again due to living this fucked up “journey” over in my head again and writing it all out to tell our little story. Don’t get me wrong, I am grateful for the opportunity, but it’s still very difficult. I got through your diagnoses and I had no idea writing about that again would leave my head spinning in the way that it did. I can’t imagine what writing about your death will be like for me. This is the part where all you lovelies chime in on how brave I am. I don’t feel brave. I just feel like a mama who will do whatever it takes to continue fighting on for her child. Wouldn’t every mama walk to the end of the earth to make sure their child’s legacy lives on? To make sure good things continue to go on, because of their baby? I would like to think so. This is also just me, grabbing on to anything and everything I can, to still get to be your mama and parent you, Ronan. I don’t get to teach you all the things I dreamed of. I don’t get to scold you when you are being naughty… The only way I can get to you, is through these things that I am so desperately trying to do. Sometimes I feel like I’m grasping at thin air, sometimes I get tired and so very sad, but I have never in my life wanted to give up or quit. No matter how frustrated or sad I get because I know at the end of the day, you’re not coming back. And that is all I want more than anything in the world. But all the gratitude and good things will keep me going… I promise you that.

Today is an amazing example of good things that will keep me going. My little hometown showed some major RoLove today. I got asked to lead a 5k run that some girls I know wanted to throw together at our Lake Sacajawea. Of course I said yes and that is pretty much all I did. Everyone else buzzed about, working their butts off to make this “Run Like A Rockstar” 5k run, happened and it ran smoothly. All I did was try to get in a few runs before the big event so I could actually try to make it around the lake without having to be pushed in a wheel barrel. We had such an amazing turn out and I felt like I was floating in a sea of purple the entire day. I ran the lake as fast as I could with an injured knee from my previous running that I have been doing. I ended up walking a bit too but I was fine with that. One of my oldest friends, Laura was sweet enough to stay back with me so I didn’t have to walk alone. She talked about how she was so excited to run this but then pulling up to park and seeing your little face on the poster was just awful. How this was such an awful reason to have to run. I told her I knew. How surreal this all still seems to me. I know I used the word unfair through my tears. How could my baby be just fucking dead? How could my totally healthy, beautiful baby boy be so healthy, and then have fucking stage 4 cancer just like that? Through her tears she told me she was sorry, but how proud she was of all the things we are doing. I am proud, too Ronan. I know we are and will change this world in a very big way but FUCK. What I wouldn’t give to have just one more second with you. What I wouldn’t give to have my old life back. I can’t though. I know this but sometimes I like to close my eyes and just pretend.

I finished the lake and my knee actually felt o.k. My time sucked but today, I had nothing to prove at all. I was just happy to finish without injuring myself even more. You know who kicked ass in the race today, Ronan? Your brothers. I had no idea that I had little runners in our family! Liam has been going on some runs with me at night, but I had no idea he could run 3.6 miles in 30 minutes. Holy smokes I was blown away! Quinn came in just a few minutes after him. Liam ran pretty much the whole lake, by himself. This totally brings tears to my eyes because I know he did this for you, and how proud you are of him. I am so proud of them both not only today, but always. Such amazing little boys they are.

After the race I got a chance to meet some really lovely people who all love you so much. It was an emotional day but so rewarding as well. I am so grateful to everyone who came to support your foundation. Thank you to all of my rad hometown babes who worked so hard to get this all done. I know you are doing these things for the RIGHT reasons and nothing more than that. That is so important to me. Thank you for never forgetting my little guy who continues to inspire you daily. Thank you for keeping his mama going by showing me how much the power of love can move mountains. I am so proud to call you all my friends and I will never forget what you did for us not only today, but always. This is just the beginning. I cannot wait for next year and I am so proud to call this place, home.

Alright little man. I need to get in some hours working on this book. I talked to your Sparkly the other day. I miss him when we are away so much. He knows that I’ve been staying up late, working on this book and I listened to him as he said with urgency in his voice, that I need to get this done so I can “Fuck Cancer.” I know what the urgency meant. It meant that kids are dying, dying, dying and nobody is paying attention. I know he feels the same way that I do, that this book is not only our beautiful, tragic love story, but it is another way to spread awareness as well. I am doing the best I can, working as fast as I can, but I also know this cannot be rushed. All I can do is my best and I want to do this the right way, not the rushed way. I am just proud that I actually started it and I am making progress.

Alright little man. Back to the book. I miss you. I love you. I hope you are safe. G’nite, babydoll.

xoxo

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23 Comments

  1. Miss L

     /  July 15, 2013

    I’m do proud of you Maya. You are an amazing mother to beautiful children. You are an inspiration to all! Keep on running never give up, your fight is doing wonders around the world.

    Wish I could meet you in person one day.

    Laura (Sydney, Australia).

    Reply
  2. Beth

     /  July 15, 2013

    You ARE brave, Maya. So very brave! From day 1 off Ronan’s diagnosis you demonstrated that bravery. Keep that fighting spirit, girl! You’re giving all the mommies and daddies whose kids are fighting this terrible disease a tremendous gift and something they desperately need. You’re giving then hope, Maya.

    Reply
  3. RoMama,
    Ro is everywhere! That’s romazing what your town did for Ro! So proud of L & Q. Running for Ro! Keep writing and working on your book! Awareness! Fucancer !!! Rolove always!!! XO

    Reply
  4. Cindy Nelson

     /  July 15, 2013

    It’s been almost 29 years and I still have such a tough time on July 16th and all the days after. I am not saying isn’t a good life, I have 3 beautiful daughters and 5 granddaughters and 1 Grandson, I just wish he was here to see them.

    Reply
  5. Maya, thank you for writing your book and all the other amazing things that you do. I struggle to “parent” my dead sons but it really does help to read about what you and other parents do to keep their children’s legacy alive.

    FU CANCER!!!!

    Reply
  6. Jessi Paulson

     /  July 15, 2013

    I love you.

    Reply
  7. Kara

     /  July 15, 2013

    Love truly can move mountains.
    Our kids deserve better, and because of your love story with Ronan they will get it. Thank you for bringing this fight so far, for all the awareness, and for ALL the lives that will be saved. I’m just so sorry you had to go thru all of this.
    From one mother to another Thank you!!! πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

    Reply
  8. Evie Jay

     /  July 15, 2013

    This quote always makes me think of Ronan, and you and your husband.
    This blog reminds me of how lucky I am, and how much we need to fight to be able stop cancer and the suffering of little ones.

    β€œThey’d crossed over to that continent where grieving parents lived. It looked the same as the rest of the world, but wasn’t. Colors bled pale. Music was just notes. Books no longer transported or comforted, not fully. Never again. Food was nutrition, little more. Breaths were sighs. And they knew something the rest didn’t. They knew how lucky the rest of the world was.”
    ― Louise Penny

    Reply
  9. Michelle

     /  July 15, 2013

    Keep on keepin’ on girl. You are doing great!! You ARE making a difference!! Hugs from Texas :)

    Reply
  10. chrissy

     /  July 15, 2013

    You are such an inspiration, in so many ways! Don’t know if you’ve seen this article or not, but anything, ANYTHING, to raise more awareness for this horrible disease has to be a good thing. And check out her amazing smile! :)

    http://shine.yahoo.com/parenting/reddit-s-mass-pizza-delivery-to-2-year-old-cancer-patient-170423611.html

    Reply
  11. beckee

     /  July 15, 2013

    Maya, I really started crying when I read about your boys running. I just imagined them all sweaty and racing as fast as they could for the ultimate goal of making their dead brother proud. When I was their age, my biggest issue was going to basketball camp and trying to get my neighbor boy to like me. It was not anywhere close to dealing with my brothers death. They are just as brave (I know you don’t like that word, but you ARE!) as their mama. Thank you for sharing all of the details about your life.
    On a side note, I am wondering what you think of The Truth 365? They have an online petition to sign to increase federal funding for cancer. I hope they are not some terrible organization, but they seem legit. http://www.thetruth365.org/petition/

    Reply
  12. Julie

     /  July 15, 2013

    Can’t wait for your book! I think you should have another 5 dollar Friday this week! I was just thinking in line at Starbucks this morning if all of these people would give 5 dollars to charity it would make a big difference! Why does coffee cost 5 dollars anyway!

    Reply
    • Jenn

       /  July 16, 2013

      I saw that same article and thought the same thing. So sorry to hear the sad news about Talia today. FU CANCER!

      Reply
  13. Samantha

     /  July 16, 2013

    Thought of your army guy when I saw this. While it is far from a solution, I think it is fantastic and brilliant and matters.

    http://www.upworthy.com/brazil-just-became-the-least-terrifying-place-for-a-child-to-have-chemotherapy

    Reply
  14. Angela

     /  July 16, 2013

    In a nutshell.. I β™₯ you….

    Reply
  15. ED

     /  July 17, 2013

    Gah what a terrible week. I’m heartbroken for Ronan and Talia and all the other kids who deserve to be ALIVE….

    I wanted to share the story of an awesome college student who goes by the name Z, who is doing her part to help kick childhood cancer’s ass. She’s raising money for an event this October where she and 4 other people will be shaving their heads to raise awareness for childhood cancer.

    Here’s her blog: http://hairfreez.wordpress.com/
    And here’s the event/donation site: http://www.stbaldricks.org/events/hairfreez

    How cool are these college students? Its a tiny shining little beacon of hope that more people will become aware of the terrible dark truth that kids are dying daily from this stupid awful disease.

    Reply
  16. Jodi Frasier

     /  July 17, 2013

    I don’t even know how to start. Cancer sucks. Lost my dad to cancer. You lost your beautiful boy. I am dealing with my best friend having a sick son. Sick from cancer with no treatment available. Her boy is adopted as are my 2 girls. I was adopting my 2nd when she was adopting her first, when we met, and instantly became best friends. I received a picture of my girl on a Tues, and she received her picture the next day, barely 12 hours apart. A beautiful boy. About 18 months, (maybe 2 yrs. It seems like forever, and for like 5 minutes at the same time) ago it started with a tumor in his wrist. They said it was isolated. No radiation needed. They got it all. You’ll be great. You can go to college. Come back in 6 months. It will be fine. 6 months later he had 22 tumors in his lungs. Those 2 surgeries behind him, and another surgery a few months ago to remove tumors from his spine. He was supposed to have surgery this Friday. There are tumors in his rib cage and who knows where else. Here is the email I just got.

    ” We are so grateful for your prayers and encouragement.

    Well, we have gone from bad to worse, or so it seems. The scans show a large pulmonary mass behind Conner’s heart. This had not shown up on previous scans. To remove it would require removal of the entire lung. With all the other tumors (spine, rib, lung), the surgeon feels a major surgery at this point is not a good plan. He advises trying to treat this systemically with one of the current trials. We were given three possible options here and they are going to contact Sloane Kettering and some sarcoma cancer place in southern California to see if there are other trials going on elsewhere. They are seeing some success in slowing the growth of chondrosarcoma tumors with a couple different oral meds. They did say there is no cure, but it is possible we can slow the growth and manage it for awhile. One of the trials seems somewhat promising. Pretty much a crap shoot though, as they kept saying how rare Conner’s cancer is, so no one knows what might work (God excepted!). So…back to the drawing board. I had a gut feel this surgery wasn’t going to happen as planned, so in that respect I feel relieved and I think Conner does, too. He had such a bad feeling about it. They also prescribed a non-narcotic pain reliever and told him it’s ok to keep using Ibuprofen and Tylenol…he was worried he’s going to damage his liver or get addicted to Oxycodone…that would be the least of his problems at this point.

    The team here is wonderful. The radiologist wiped his eyes a couple times while we were talking, and they were all so gentle, kind and genuine. For that we are thankful.

    There have been other things to be thankful for as well: a friend who lets us use his truck every time we are here, other friends who had us over for dinner and the night, a friend from home who had a bday cake delivered to Conner at the Inn,friends who sent cards, friends & family who treated us to bday dinner & drinks, two nurses in nuclear med who made him a bday card and attached two lottery tickets ($5 winner!), many of the same warm, friendly faces who remembered amazing details of our family after a year, the encouragement many of you have sent, knowing you’re praying, hot humid weather that hasn’t been too awful!, etc, etc. I know Conner is struggling to feel God’s presence, but He is definitely with us.

    Not sure what the plan is from here. Conner has an MRI in the morning. They want to see his spine again. Then I guess we wait for referrals. Guessing we’ll be home over the weekend? Not sure. Will keep you updated. I guess the main prayer now is that we get hooked up with the right trial soon so Conner can get started before school starts. That’s all he wants to do. Then of course, will pray something works to choke the blood supply to these tumors.” That’s the end of her email to me. I don’t know how she stays so positive.

    FUCK CANCER is what I say. Conner turned 21 two days ago. He is a promising filmmaker and everyone loves him. A wonderful young man. Had the pictures of our babies been reversed, Conner would be my boy, and my boy would be dying. I feel like he is my boy. How horrible am I, that I am so grateful that I got Miranda’s picture and not Conner’s, I am all over the place.

    So I am here in Tukee, where my friend and I met 21 years ago, and now she is in Oregon. I feel so helpless and so lost. I wish I could help them. I hope it is ok that I posted here. I know you will understand my jumbles of emotion and anger and frustration. Thanks for listening.

    Reply
  17. KT

     /  July 18, 2013

    What a beautiful post!!!
    I love you, and miss you!!
    xoxo

    Reply
  18. KT

     /  July 21, 2013

    Rain and hummingbirds today. Thinking
    of Ro. πŸ’œ

    Reply
  19. Jessica

     /  July 21, 2013

    Maya, you are truly an inspiration to us all. Your dedication and perseverance has truly impacted my life, as well as others. I know that God has a special place for Ronan in heaven, and I’m positive that he is loving it up there. He gets to run and play as a little boy should, with no pain or sickness whatsoever. Its amazing how one 4 year old boy can touch so many people. I can’t wait to meet this little fighter in heaven one day. Stay strong.

    Reply

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