Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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Ava is Love

Hi little lovies. I’m back from Texas. It was a great trip. I will update you soon. My head is spinning with a thousand different things that I need to do, that need to be done, lots of plans to put into place. My head is spinning but all I can do is sit here and think about this sweet little Ava. She lives Arizona. I know her, not well, but well enough. This is another time that I wish I had a magic wand to make this all go away. I don’t. This is why there has to be a cure for this nasty disease, soon. No child deserves to go through any of this. Can you all please keep Ava in your thoughts, hearts, prayers, or whatever it is, you do. She has been fighting so hard, for so long. This is breaking my already broken heart. Thanks, friends. xoxo

http://www.caringbridge.org/visit/avaholder/?ref=nl

The eagle has landed!! Or maybe just Maya has landed in Austin, Texas.

 

Ronan. I had our white party, yesterday. I had it solo and it really wasn’t much of a party at all. But I wore all white and just did my normal, everyday stuff. I didn’t bring it up to your brothers. They don’t need to know every single one of these dates, all in a row, the way I do. I will protect them from what I can and the date that we had your service last year, didn’t seem like a day I needed to remind them of. They have been reminded of enough lately. My party didn’t last long, my party wasn’t very fun. I don’t think P Diddy, would have enjoyed it. I am glad he didn’t come. I spent the majority of yesterday, unpacking all of our suitcases and doing about 20 loads of laundry. I am anal like that. I needed everything to be put away/clean so I could feel o.k. about turning right around to hop on another flight. I am in route to Austin, Texas as we speak, but due to US Airways sucking balls, our flight has been massively delayed.

I am heading out to Austin, Texas to go to the Dell Children’s Medical Center for the 2012 NMTRC Symposium. I am going to listen to them talk about the latest in genomics-based personalized treatments for neuroblastoma in children. You see, when you believe in something or someone as much as I do, you will do whatever it takes to support them and learn as much as you can, about what they are doing. Even if that means surviving the worst month of the year, being beat down, tired, numb, sad and alone; but still continuing to move forward. I believe in Dr. Giselle Sholler this much. I believe in her, so much that I will do whatever it takes to help support her in whatever way I can. As of now, going to this conference is my way of saying thank you to her. For all that she is doing. It is my way of supporting her and it is a great way to learn the everything I possibly can, about what she is doing. Yes, I am tired. Yes, I just had a brutal past week. Yes, I would like to just crawl in my bed and not come out for a while. Yes, I probably need a break. But now is not the time for this. Right now, I have work to do. Right now, there is no stopping. I am too angry at this disease to stop and come up for air. I will eventually, but not now. Dr. JoRo texted me to see how I was doing. I told her I was in the zone. She told me she was worried. That my “zone,” makes her nervous. That she feels like I just got though the dates of hell, and now here I am, off again to do more, more, and more. I told her I knew. That I was nervous too. I told her I expected to have a breakdown next week. But not this week. This week I have some stuff to take care of. This week I can power through because I am strong even when I am not. I am doing this week, because this is what comes along with still taking care of you. I say this all the time, but this is my way of taking care of you. I will always put you, before myself. Always.

So yesterday, I played catch up all day. I got everything in the house, taken care of which in turn will lessen my anxiety and it will be nice not to come home to a shit storm of suitcases/dirty clothes, everywhere. I could not handle that so I powered through the day. I slept last night, off and on. No Ambien needed. I think I mostly tossed and turned. I sent some emails at some very vampire times so this tells me I really did not sleep at all. Today was more of the same stuff. I finished packing. I ran to Safeway to get our Hallie a little something for her birthday. I dropped it off at Green Cleaners for her and got to run in and give my friend a hug. She is my friend and she loved you. I think I made her day. I hope so, because she often makes mine. Whenever I’m having a bad day, I will run by to see Hallie because her mouth and her sass always makes me laugh. Laugher to me, is priceless. Not many things make me laugh anymore. She always does. I hope she had a nice birthday. She deserves to.

I am finally here. I am tired. I spent much of the flight with my head buried in your blanket, crying. Tonight, I am beating myself up. Tonight, I am filled with we should have done this. Tonight I am filled with, why didn’t we do that? Tonight, the only voice I hear in my head is I didn’t do enough to save you. In my irrational mind, if that were true, you would still be here. I know this is not logical. I know this an impossible standard to live with. I see how absurd this all sounds. It’s not a fun place to be, but this is where I am, as of tonight. I hope to wake up tomorrow, wearing a new set of glasses that seem less foggy and hard to see out of. Sometimes, things get really blurry and foggy with these glasses of regret and shame on. Maybe I just need some sleep.

Alright little one. I love you. I miss you. I hope you are safe. Sweet dreams. I love you to the moon and back.

xoxo

Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

Ava Holder

  • Dear Lovely Little Blog Readers,

    I’ve had the chance to meet Ava and her mom, Chrisie, a few times. I have looked this little girl in the eyes and I have seen the fire that exists. She has endured so much and continues to fight like a rockstar. Ava’s family needs help as they start a new treatment in Texas as they have been left with no other options. Please take the time to read the letter written by Ava’s Grandmother below. If there is anything you can do, no matter how big or small, it would help so much. Please keep this little girl in your thoughts, prayers, or whatever it is you choose to do. Please take the time, to remember how lucky you are to have your babies safe and healthy. Please stop and cherish every single second you have with them. I’ll be talking to Ro today and asking him to watch over Ava and help her in any way he can.

    I love you all so much. Thank you for your endless love and support. Thank you for being grateful. Thank you for being the best version of yourself, that Ronan would give anything to be.

    Dear Friends and Family,
    I am writing this letter on behalf of my granddaughter, Ava Holder, who as many of you know is battling cancer. This February marks the 3rd anniversary of Ava’s diagnosis of Stage 4 High-Risk Neuroblastoma. Over the last 1,095 days Ava has had huge obstacles to overcome. Ava has never had a break in her treatment – it has been a constant for our family. It is remarkable that Ava has survived this disease and her treatments to this point. We were not sure Ava would make it to her 2nd birthday. Ava has relapsed in her brain 3 times and in her body several times. Ava is currently in the fight of her life with an inoperable brain tumor and a tumor on her pelvis.

    Doctors have given Ava limited treatment options as she has had her maximum amount of radiation and 17 cycles of high dose chemo which has required 2 stem cell rescues, 5 tumors removed from her brain, and 1 major resection surgery in her abdomen. Despite all this Ava is a vibrant four and a half year old who loves to ride her bike, play dress up, and most of all loves her big brother Eli. Ava looks forward to the future and has dreams to one day become a doctor and help kids just like her.

    Ava has never given up her fight and neither has her family. This February Ava with her family will travel to Houston, Texas where they will embark on an experimental trial that involves chemotherapy and a vaccine treatment. The year long trial consists of traveling to Houston every 2 weeks for the vaccine. The expense incurred over the next year will include airline travel, lodging, ground transportation, meals, and various medical expenses and copays plus any unforeseen costs. Total monthly costs are expected to exceed $2,000. These costs will be incurred every month for a year. Many of you have asked what you can do to help. Having a child with cancer is stressful. It takes it’s daily toll on you physically, emotionally and financially. Chrisie and Nick are so strong and have always handled the situation with such grace and dignity. They would never complain or ask for help themselves which is why I’m reaching out for them and my granddaughter.

    The expenses of associated costs surrounding Ava’s treatments will add up quickly. We have seen our friends and family come together in the past to help Ava but continue to be asked what can be done to help now. So I ask you, our friends and family, to assist financially Ava’s family with current travel and medical expenses. Any contribution is welcomed, no amount is too small.

    Thank you for your continued support and love. Please share this letter with others who have the ability to support Ava. Family updates can be viewed at:
    www.caringbridge.org/visit/avaholder

    All checks can be made payable to Ava’s parents. Chrisie and Nick have set up a savings account dedicated to Ava’s medical/travel expenses.

    Nick and Chrisie Funari
    18036 N 93rd Street
    Scottsdale AZ 85255

    With Great Love and Hope,

    Bruce and Sharon Elliasen
    Cell#602-432-2962

  • www.caringbridge.org

    Through CaringBridge, you can be a part of Ava’s health journey by reading updates, viewing photos and leaving messages of love, hope and compassion in the guestbook. Your support will mean the world to Ava.