I am going to take my anger out on my surfboard with some very mean looking waves. I will surf for Ronan and Ava, and all the other kids, who will never get the chance to.
F U Cancer.
I am going to take my anger out on my surfboard with some very mean looking waves. I will surf for Ronan and Ava, and all the other kids, who will never get the chance to.
F U Cancer.
Ronan. Fucking fuck fuck fuck. We left AZ. Had to leave AZ. Just like we do, every summer. This year, I couldn’t get out of there fast enough. Last summer, I was in such a fog coming here. I think I was highly medicated. I don’t remember any of it, really. I left you at home. I left your urn and your ashes at home. This year, I didn’t. I put your urn at my feet in the front of the car with me. Safe and sound. I was not about to leave you behind this time. Who reads that last sentence that I just wrote, and is able to just go on with their lives? Who reads that sentence and just goes, “Oh, that’s nice, she tucked her child’s urn, at her feet because he died of cancer… I’m off to go shopping now and not help in this fight against childhood cancer.” I think a lot of people. I think a lot of people who still live in the world of puppy dogs, unicorns and rainbows. Those people, suck. I am thankful for those who read my words, close their eyes, are thankful for all that they have, but that is not enough. I am thankful for those people who do not just go on with their days, without thinking about Ronan or Ava or Esther or Ben or Liam or Hazen or Ezra or Saoirse… I could go on and on and on with the kids’ names that I know now. I am thankful for the people who take the time to donate what they can, because they know want to help against this war that we are in. I am thankful for all the love and support friends, family and strangers. Without all of them, things would not be happening the way that they are.
So, today we packed up our car and headed out of AZ. Out of our house that is slowly killing me. I could not get out of that state, fast enough. I could not take another day of walking past your empty room, not hearing the pitter patter of your little feet or your squeaky little voice. I don’t know how I’ll ever get used to not having you around. I feel like I am a shell of a person. I feel like I am a shell of a person yet I look back on last year and fuck… even that kind of scares me because I was in such a bad place. I think I spent the majority of the summer, in bed, crying. I think I was out doing crazy things like swimming in the ocean in the middle of the night and taking way too many sleeping pills. Looking back, I clearly was trying my best not to live. I seriously could have cared less. This year, I’m not better. Because you never get better from something like this. I’m just different. I want to be around to tuck your brothers in at night. Last year, I did not. And I don’t think it’s such a good idea to go swimming in the ocean, at night. But I am also aware that I still have that streak of crazy that exists in me and I never know when it’s going to come out which in turn usually means my pain needs to be fed by something other than sheer pain. Usually something crazy like a night swim or this marathon that I am running on Sunday and I have not trained a lick for. 26.2 miles without training is a little insane. But whatever. So is watching your baby throw up in bed from the chemo poison that is being injected into his body that is supposed to be saving him, but it turns out, is not. That is truly fucking insane. So is driving to San Diego with your baby’s body burnt to a crisp. Nothing is more insane than that.
We arrived here. Unpacked. Your brothers were hungry. We headed out to go to Costco but it was closed. Your starving brothers could not wait to eat and IHop was our best option. We ended up there where your brothers enhaled bacon, waffles, eggs, pancakes… you name it, they ate it. You would have loved our little breakfast for dinner outing. I was sitting there, thinking about Ava. I’ve been checking in on her all day through Facebook and her Caring Bridge. Nothing had been posted. Just as I was thinking about her, I got an alert on my phone. I read it, felt the color drain from my face, excused myself from the table and into the IHop bathroom I went to puke my guts out. I read the words, the Ryan House. Hospice. Not doing well. That was all I needed to see. It was if I was living last year, all over again. Fucking fuck. No. Not again. What is happening? Why is this monster taking all of these babes and nobody gives a shit? Because if they did, this would not be happening at the rate it is. Do you know what this looks like to us parents going though this? It looks like somebody is lining up these kids, one by one, and blowing their brains out. If that were the case, this country would be in an uproar. But because childhood cancer, is such a dirty little secret, everyone can just look the other way. That’s not fair. That’s not right. People need to start stepping up and making such a stir about this so that funding will be a little more fair. Give these kids a chance to grow up and get things like breast cancer or prostate cancer. Give them a freaking chance, you fucking idiot fuckwads.
Back to Ava. Back to the Ryan House. I’ve been quiet about this for a while. I am not going to say I am thankful that we got to go there, because no parent should be thankful that their child is dying, so they get to take them to this place. Ronan. The Ryan House, should not exist because kids should just not die. If only it were this simple. I did not think we were taking you there, to die. But everyone else knew around us. I thought we were taking you there, to get your pain under control. I was in shock. I still had hope. I heard the whispers all around me. I got the whole, “You are so calm.” Of course I was calm. You were not going to die. I was still going to fix you. I didn’t understand any of what was going on. I remember being confused as to why everyone was coming to see us. I felt like we were zoo animals on display. Like I was the mama bear in her den with her baby, hiding behind a glass wall, while everyone on the outside, was looking in at us. I didn’t know they were all coming to say goodbye. I didn’t figure any of that out until probably a day before you died. That we were not going home. I remember thinking that nobody knew what they were doing. Why was I the one asking for oxygen for you? Why was I the one calling your Dr. Maze to ask him what to do for you, in order to get your pain under control? Why were you getting all bloated? Why were you not peeing? Nobody told me this was all because your body was shutting down and you were dying. Nobody explained anything to me. And then it happened. Your little heart, stopped beating. Somebody came in after you had left. They brought in a tub of water. They said they were going to give you a bath. I remember looking up at them and saying, “No you’re not. I’m going to give him a bath.” I remember this person saying to me, “You are very brave.” I looked up, dumbfounded. “I’m not brave. I’m his mom.” I bathed you. I dressed you. I kissed you. I didn’t hold you. I didn’t know I could have. I didn’t know I could have rocked you. Held you or spent as much time with you as I wanted to. I wish I would have known that. I think I stayed in the room for a while with you. But I let somebody else pick up your body and take you away. I wish I would have done that. It was not anybody else’s job. But I knew none of this. I am so sorry.
Then we left the Ryan House. Bye! Have a nice summer! I think we were checked on and I know we were refered to a place called New Song. But nobody from the Ryan House ever mentioned the MISS Foundation to me, which blows my freaking mind. Ummmm… hello. They work with bereaved families. Ummmmm… hello. I know you are aware that they exist and I know you know who Dr. Cacciatore is, because she is a badass and truly has a gift for helping these families. Where was Dr. JoRo when I was at the Ryan House? Why didn’t anybody ever offer her to me, to hold my hand through what it is, that she knows best?? Why is it, that out of sheer desperation for my life, that I had to find her by screaming in bed one day, not able to get out and googling, What to do if you have a dead child in Arizona? I don’t know. This is what this woman does and she only does this for the fact that she truly wants to help these families. This is not about the money for her. This is only about taking her pain, experience, sadness, compassion, and using it for good. That is the thing that upsets me most. She saved my life, yet I had to find her on my own. There is a very good chance, that I would not be here if I had not found her. I thank you, Ronan, for helping me get to her. But it shouldn’t have been that way. Somebody at the Ryan House, should have offered her to me. She is a gift and I was in shock. I would have accepted someone to walk me through the hell I was about to go through. Instead, I went though it scared, abandoned, and alone. That’s the truth. There were so many mistakes made though out this whole your child has cancer, process. I am not going to stop until they are all fixed. Dr. Jo will be a part of everything that I do. She is part of my fixing the world, package. It’s as simple as that.
I went for a little run tonight. I talked to you about Ava. Please do everything I asked. Now is not the time to rebel, little one. She needs you. Take good care of her. I will try to help her mama in anyway that I can, but I feel helpless. There is nothing that I can do or say that is going to make this easier. All I have to offer her is I know what this feels like. And I am not dead from the pain. I am still here. That’s all I’ve got. That and I am just so sorry. I love you, Ronan. I miss you. I hope you are safe. Sweet dreams, baby doll.
Ronan. I had a lot to get done today. A lot of stupid, everyday stuff. I had a my little Mandy Bee, to help me get my things done. Sometimes I need help. This little Bee knows it without me even having to ask. Even if it’s just things like going to the post office, picking up dry cleaning, etc… This little Bee swoops in, drives me around, helps me with all of my little chores because some days, even the littlest things, seem like big things to me. That’s how it was today. I walked into Walgreens with this little Bee. I ran into an old friend of mine. One that has quietly been waiting for me, on the sidelines. The last time I saw her, you were sick. She’s been reaching out to me, but from a distance which I so appreciate. It was pure alignment of the stars, that I ran into her when I did. She was sitting in a chair, waiting for a prescription. It took her a minute to recognize me as I was in my best undercover Fedora Forever 21 hat like I love to wear, when I am feeling in a piss off world kind of mood. I looked at her, without saying anything for a minute. As soon as she recognized me, she got up to give me a hug. I stood with her for a while. I nuzzled into her neck and started to cry. Mandy Bee swooped into grab the items I was carrying, before I dropped them.
We fell into a rushed/emotional talk. I then said to her, “I’m leaving tomorrow. What are you doing, tonight?” We made plans to meet up and to catch up. I had a lot of shit to do, tonight, but I didn’t care. I needed some time with my Janet. We met up. It was as if no time had passed at all yet the entire world had changed. I caught her up on things. She knows the outside of my world like a lot of people do, due to reading this blog, but tonight I got to sit down with her and catch her up on my inside world. She made me laugh with her great stories of me and how we first met. I had forgotten the details as my memory is still long gone with most things in my life that happened in the past. I was telling her all of my crazy ideas about what it is I want to do for you. She just looked at me and said, “Do you remember how you met me??” I said, “Yeah. You were one of my professors. I was one of your students….” She goes, “Oh my god. You really don’t remember? You don’t remember how the course I was teaching was closed, due to it being all full of students? How you tracked me down, on campus, and begged me to let you into my class?” I just looked at her and said, “Ummm, no. I don’t remember that at all.” She goes, “Maya. This is how I know you are going to get this done. I told you, NO, that my class was full and I was not going to let you into it. You didn’t even give me an option. You somehow made me change my mind and open up one more spot for you. I did not want to. I even thought to myself, GOD, this girl is annoying. But you wouldn’t take no for an answer. And I told you no, more than once.” I smiled at Janet. “Yeah… I guess I kind of remember that now. A little bit.” The memory of this is still faint but I can remember parts of it. Janet went on to say, “You told me that I wouldn’t be sorry. You gave me some sassy pants attitude that you would be the BEST student that I had ever seen. Something in your eyes made me believe you. I knew there was something different about you. And so I finally agreed to let you into my class. And you know what, you were my best student. You sat in the front row of every class. You kept all your promises. You were my star student. One of the best I’ve ever had.”
I giggled at Janet’s memory. I guess after being in her class for a while, I also made her agree to go to lunch with me, even after she told me that she did not interact with her students, outside of school. I somehow got her agree to go to lunch with me and after that, our student/teacher friendship flew out the window. We became very close friends. The last time she saw you, we went to Chelsea’s Kitchen. I think you were still pretty little, but I remember you being such a handful even back then. In the best way possible, of course. I have no idea, where you got that from:)
Our dinner tonight turned into a 3 hour dinner. I listened to Janet tell me how proud she was of me for all I am doing. I let her words sink in. I listened to her advice as I have always admired the things that have come out of her mouth. Her words mean a lot to me. They always have. As we were leaving, some man who had been sitting by us for most of the night, was telling us goodbye. He got the gist of your story due to his overly curious mind/really wanted Janet’s phone number. He told me he was sorry about you and he thought it was really great what I was doing. I just looked at him, shrugged my shoulders and said, “I’m here to fuck cancer, in the ass.” True statement. Those are the words that came flying out of my mouth. I don’t think he knew quite what to make of my statement which in turn, made me giggle. My filter did not exist tonight, in that moment. This is just how I am. Love me or leave me. Take me as I am or let me go. I am o.k. with all of it.
I have one more little thing to say tonight. I don’t have a high tolerance, for listening to people complain about stupid shit in their lives anymore. Stupid shit such as, ” I am so stressed. I have this party to go to. I have this many errands to run. My kid has an ear infection. I didn’t get time to go to the gym. My life is so busy, stressed, awful and my kids are driving me crazy.” If you complain about this stuff, I can guarantee you, I will shut down. I will not say a word to you because I have mentally checked out. I have already written you off for the time being. I am not doing this to be mean or hurtful. I am doing this because all I am trying to do, is survive. I cannot exist in a world full of pretend problems. I don’t have the mental capacity to handle that. If you think I am being harsh or unfair… please take a second to read this. I think you will better be able to understand, what it is, that I am saying. This is from my friend, Ava’s caring bridge tonight. If I sometimes come off too harsh, jaded or unfair… you only need to read these words to understand why. My heart is sad, heavy and broken. I am so sorry to Christie, Ava, and her family. Nobody deserves this.
Written 7 hours ago by Chrisie Funari
i am sorry – I have bad news. This is so hard to sit here and type. I just got home from the hospital and am exhausted – we all are – nothing in comparison to Ava. Ava’s scans show that she has a lot of new progressive disease in the front part of her right brain, her esophagus/chest, pelvis and stomach area and in her spine. This is in addition to the disease she already had – her brain tumor and her tumor on left pelvis. This new disease did not show up on her scans 6 weeks ago – or on her follow up ct scan just 3 weeks ago. So, it means this new disease is growing rapidly. Ava got extubated last night at midnight. It is almost indescribable what it feels like to watch your child go through that. She will continue on daily dialysis and the goal is to keep her comfortable and keep her pain under control. Ava’s body is not able to handle any cancer treatments as her kidney’s are just not working. She has zero urine output and her legs and stomach are swollen since they are full of fluid. Her doctor said we would come up with a plan of care next week. Ava continues to be in pain so this afternoon she was hooked up to a morphine pain pump and she seems a lot more comfortable. We are so saddened by all of this and thank you for your continued support and prayers. We are taking it one day at a time.
-Is this what is going on, in your life? If not, shut up and be thankful for all the fucking soccer practices, ear infections, homework and graduations that you have going on. Seriously. I feel like I sound like a broken record. If you are going to complain about things that you should be thankful for, please be kind enough not to do it around me. Please continue to keep Ava in your thoughts, prayers, or whatever else it is, you might do. Then get up and go hug and kiss your kids because you are so fucking lucky, to have them. Reading Christies words ripped me to shreds. I know them all too well.
Ronan. Please take care of Ava. I can’t sleep tonight. It’s now 2 a.m. I have not been able to stop thinking about Ava, all week, but today she has been on my mind, all day long. I don’t like this world I live in now. I would like to go back to the world of unicorns, rainbows and puppy dogs where childhood cancer, does not exist. How many kids are going to have to go through something like this, before something is done? I am trying really hard to work as fast as I can, but it is not fast enough. This should not have happened to you, Ava, or the thousands of other kids I am hearing about. Enough is enough. I love you, baby boy. I love you. I miss you. I am so very sorry. I hope you are safe. Sweet dreams, baby doll.
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
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:
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