Fancy and Karma can go get FUCKED

Ronan. The holidays are over. I’m still standing. I’m may be shaking, but I’m still standing. The room is still spinning, but I’m still standing. I wonder how long until I fall. Hard. I wonder if I’ll be able to get back up. Some days I think yes. Other days, I think no. Today, I thought no. Today, I am just trying to breathe. I did a lot of things today. I went to breakfast with your daddy and brothers. We played football, basketball, and went on a bike ride. I’m exhausted from the normalcy of today. My hands have shaken for 2 days now. Your daddy asked me if I was mad at him. I told him I was not. I was mad at the world. I am. I used to believe in karma, Ronan. You know you always hear, you get back what you put out there. Fuck that. I believed in karma, until it kicked me in the face. Now I’m not sure what I believe in, besides you. Without having you to believe in, I would not be here. That is a FACT.

I spent most of the day, hiding my tears from your daddy and brothers. Your daddy asked me what we had planned for next weekend. I wanted to punch him in the face. I don’t understand how he can possibly ask me such a question. Does he not see that I can hardly get through the day, let alone think about next week? I wanted to scream at him that I was not doing anything, until he brought you home. I didn’t. It took everything I had, not to. I just don’t understand, why you can’t come home. Or why you had to leave home in the first place. I still wonder when you are coming back. I walked around most of the day screaming back at the voices inside of my head and staring at your Urn. We had friends over for dinner except I forget to cook for them. I’ll let them say it was a miscommunication but it was not. The old Maya would have never done such a thing. The old Maya would have given Martha Stewart a run for her money. Tonight, I tried to keep myself composed but I was so shaky it was all I could do not curl up into a ball and hide in the corner. I told Mandy Bee this while we sat on the floor of our laundry room and folded socks. Ahhhh, yes! Come for dinner where I totally space everything but you can sit on my floor and help me fold the piles of laundry that won’t fucking go away! What the hell? Whose world am I living in because it can’t certainly be mine! My old world, the one where you were here, where you are supposed to be, the laundry didn’t stand a chance! I always had that beast under control. Now, it is eating me alive. How are the simplest things, so challenging? Oh wait, I know. It’s because I no longer have your clothes to wash, your stains to remove, your socks to fold, your sheets to clean, your bed, to make. I still carry your socks in my purse though. The one’s that I put on your little feet before you died. The ones that kept your little frozen toes, warm. I carry your little socks with me all the time. I told you I was a good mom. I’m still an awesome mom, to you even though you are dead. TOTAL AWESOMENESS, RO!!!!!!!!!!!!!!!!! fucking bullshit, ro.

Mia’s mom called me tonight. I normally don’t answer the phone anymore, but I was sitting on my bed with Mandy Bee and she called. I didn’t hesitate, picking up as we don’t get to talk often. She was crying. She told me she had just read my last post. I told her I wish she wouldn’t have. I don’t remember what I wrote, but she told me she was really worried about me. I didn’t argue. I told her I was too. Because I am. I listened to her and the way her voice quivered, I listened to her as she begged for someone to help me. I listened to her, as she asked if there was anything that was going to make this easier. I told her no, I didn’t think so. I told her I think I am just expected to live with this pain for the rest of my life. I told her, I didn’t think I was strong enough. I told her that I still can’t believe that I was staring at your ashes on top of my dresser. I told her that nothing is getting easier. I told her a lot of things, I wish I didn’t have too. I wish I wouldn’t have had to listen to her as she cried about Mia, how she may never walk again, but oh wait! The cancer is gone, so they have won! Everything is ponies and rainbows and sparkles galore! Bullshit. Sandra knows this is bullshit too. I know she wouldn’t trade places with me in a heartbeat. I know she was not being insensitive to losing you, Ronan. And all they have been though, is fucking awful and it’s not even close to being over. Mia had her childhood robbed from her but she is still here fighting, even though cancer is trying so hard to take anything she has left. So, going back to the fucking karma thing? This is fucking karma? A little girl like Mia, who was perfectly healthy, deserves to have her entire body destroyed because it was trying to fight the cancer that was trying to kill her? She didn’t do anything, to deserve this! And where does that leave you? Karma for you? You deserved to die because what goes around, comes around? Fuck that. I wish people would actually think of other situations, besides THEMSELVES, when speaking. Mia does not deserve this. You did not deserve this. Charlotte did not deserve this. Haley did not deserve this. Esther did not deserve this. None of these kids, deserve this! I don’t know who the fuck is in charge but if I ever find out, it is not going to be pretty. I may not know who is in charge, but I am here to scream and cry and yell until someone fixes it. The world owes all the parents, and children out there, who are dealing with this, better outcomes and answers. They owe us, because too many kids are suffering and DYING from the NUMBER 1 DISEASE KILLER IN CHILDREN!!!!!!!!!!!!!!!!!!!!! HELLO ASSHOLES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What do we have to do to get people to start acknowledge this?????? We have billboards, TV, Movies, Books, Magazine Ads, but NOBODY is willing to take this on? St. Jude’s is not enough to get the word out. It’s not acceptable that when people think of childhood cancer, they think of only St. Judes. It’s a start, but bigger things have to start happening or our kids don’t stand a chance. Ronan did not stand a chance and he should have. He MATTERED. He should still be here but because of the lack of awareness and funding, he is sitting in an URN on the top of my fucking dresser where I get to kiss him goodnight now. So karma, can kiss my fucking ass. This has nothing to do with karma. It has to do with bad luck and a society that would rather look the other way and watch the fucking Kardashians on T.V because that is what matters in this world? Because childhood cancer is too sad and it doesn’t happen to kids. Well FUCK YOU. You know nothing about sad asshole society. Unless you too, have had to bury your child. Unless you too, are now expected to live in a world that is UNFUCKINGLIVABLE. If you know what this is like, then do something about it. If you don’t know what it’s like, do something about it, so that if the awful time ever comes, that you do… and I pray to Ro that it doesn’t,….. you will know that you helped make a difference. Stop standing around like a bunch of ignorant fuckwads! Stop being scared! Be the change you want to see in the world. Stop being so selfish and wasting time on things that do not matter when you could be doing something like helping to save a child’s life by making people aware of how ugly childhood cancer is. How it deserves to be recognized. How people need to stop doing things just to have their fancy name on a fancy door at a fancy hospital to go to a fancy ball so they can dress up in a fancy dress. Clinical trials need funding. Research needs funding. This is the only way the results for childhood cancer are going to change. You can build all the fancy hospitals you want but if the right answers are not there, I hope you felt really good about eating in the new cafeteria while the Friday Night Candy Cart came by all while your child was really dying. I hope that free meal, was worth it. I would have rather sat my ass in a ghetto of Mexico with Ronan if I knew the treatment there, would have been the best chance he had. Not because I cared about what the hospital looked like. I’ll bet you half of the people who are donating, do not even know where their money really goes. Do they ask? Probably not. Is it going to save a kids life? I doubt it. But it makes them feel good because they get to put on the fancy dress and Louboutin shoes and have their picture in a fancy magazine so they can show all their fancy friends and feel good about themselves. Unless you are on the floor of a hospital, wearing your Louboutins, getting down and dirty, holding the babies who need to be held because their parents work 3 jobs so they can’t be there……..Fancy can get FUCKED.

I know I still have not been clear on where this money is going to go towards. As of now, it’s piling up. I am going to NYC Janury 22-30th to meet with a couple of people who I hope can steer me in the right direction. I have to cover all of my bases. I am meeting with Dr. Mosse at CHOP in Philly to look at the clinical trials she is working on. I believe in her and I know she is doing everything she can, to make a huge difference in Neuroblastoma. This money, will NOT be used so Ronan’s name can go on some fancy door. This money will be used to help with research of clinical trials that will hopefully let some children at least celebrate another birthday. I know the doctors are no where close to having a cure for this disease, but FUCK. What I wouldn’t have given, to have had Ronan around to celebrate another birthday. What I wouldn’t have given for some more time, with my baby boy. Anything I had. Everything I had. My hands, arms, legs, eyes, whatever it would have taken. I sold my soul a long time ago to somebody. He can keep that. I don’t want it back. I’m in the process, of finding a new one because the soul that once was me; is DEAD.

Ro baby. I don’t know what else to say. Except I am sorry every second of life. I do not think you are WILD and FREE up in heaven with GOD. Enough with that people. Or keep it to yourself. I don’t want to hear it. I am not on this one all mighty GOD bandwagon. And if he is hanging with God, then GOD is an asshole because he should be here with ME. His FUCKING MOTHER. The only one who was ever supposed to take care of him. Can’t we just leave it at Ronan is wild and free? That gives me a tiny bit of peace. Not much but it’s better then nothing. Ronan was too much of a rebel to be hanging with this “God” dude. He is wild and free all by himself. But I’m sure he’s got a great wolf pack in tow, following right behind him. I love you, Ronie baby. I miss you. I hope you are safe. Please make me a little less sad tomorrow. I don’t know if I will make it if things continue on this way. Why can’t anyone save me? You know why, Maya. Because you never let them. You’ve always saved yourself. The cycle…continues. It’s been this way since you were 9 years old. I doubt things will ever change. The only person that can save you; is you. I know this. I just wish someone could swoop in for a bit so I could take a break. But no breaks here. This mission is too big, but not impossible. You were mine, you changed my entire life, I am here to carry this out for you, baby doll. Just like we talked about. G’nite my sweetest boy. I love you. Sweet dreams.

Throwing this in here for you all tonight. I talk about living a fearless life a lot now. Because I do. I don’t fear much of anything…. unless you count Rats, Mama Kristi…. that was for your Raine. xoxo

So read this. Think about this. Tonight, when I was needing some inspiration, I found this thanks to Dr. JoRo. I felt hopeful once again. I felt like I can do this. I can change this. I’m not afraid. I’m a rebel at heart. Ronan’s Rebel Forever baby. Breaking the rules, all the time.

by Jiddu Krishnamurti

“I WONDER IF WE HAVE EVER ASKED ourselves what education means. Why do we go to school, why do we learn various subjects, why do we pass examinations and compete with each other for better grades? What does this so-called education mean, and what is it all about? This is really a very important question, not only for the students, but also for the parents, for the teachers , and for everyone who loves this earth. Why do we go through the struggle to be educated? Is it merely in order to pass some examinations and get a job? Or is it the function of education to prepare us while we are young to understand the whole process of life? Having a job and earning one’s livelihood is necessary- but is that all? Are we being educated only for that? Surely, life is not merely a job, an occupation, life is something extraordinarily wise and profound, it is a great mystery, a vast realm in which we function as human beings. If we merely prepare ourselves to earn a livelihood, we shall miss the whole point of life; and to understand life is much more important than merely to prepare for examinations and become very proficient in mathematics, physics, or what you will.

So, whether we are teachers or students, is it not important to ask ourselves why we are educating or being educated? And what does life mean? Is not life an extraordinary thing? The birds, the flowers, the flourishing trees, the heavens, the stars, the rivers and the fish therein- all this is life. Life is the poor and the rich; life is meditation; life is what we call religion, and it is also the subtle, hidden things of the mind- the envies, the ambitions, the passions, the fears, fulfillments and anxieties. All this and much more is life. But we generally prepare ourselves to understand only one s mall corner of it. We pass certain examinations, find a job, get married, have children, and then become more and more like machines. We remain fearful, anxious, frightened of life. So, is it the function of education to help us understand the whole process of life, or is it merely to prepare us for a vocation, for the best job we can get?

What is going to happen to all of us when we grow to be men and women? Have you ever asked yourselves what you are going to do when you grow up? In all likelihood you will get married, and before you know where you are you will be mothers and fathers; and you will then be tied to a job, or to the kitchen, in which you will gradually wither away. Is that all that your life is going to be? Have you ever asked yourselves this question? Should you not ask it? If your family is wealthy you may have a fairly good position already assured, your father may give you a comfortable job, or you may get richly married; but there are also you will decay, deteriorate. Do you see?

Surely, education has no meaning unless it helps you to understand the vast expanse of life with all its subtleties, with its extraordinary beauty, its sorrows and joys. You may earn degrees, you may have a series of letters after your name and land a very good job; but then what? What is the point of it all if in the process your mind becomes dull, weary, stupid? So, while you are young, must you not seek to find out what life is all about? And is it not the true function of education to cultivate in you the intelligence which will try to find the answer to all these problems? Do you know what intelligence is? It is the capacity, surely, to think freely, without fear, without a formula, so that you begin to discover for yourself what is real, what is true; but if you are frightened you will never be intelligent. Any for of ambition, spiritual or mundane, breeds anxiety, fear,; therefor ambition does not help to bring about a mind that is clear, simple, direct, and hence intelligent.

You know, it is really very important while you are young to live in an environment in which there is no fear. Most of us, as we grow older, become frightened; we are afraid of living, afraid of losing a job, afraid of tradition, afraid of what the neighbors, or what the wife or husband would say, afraid of death. Most of us have fear in one form or another; and where there is fear there is no intelligence. And is it not possible for all of us, while we are young, to be in an environment where there is no fear, but rather an atmosphere of freedom- freedom, not just to do what we like, but to understand the whole process of living? Life is really very beautiful, it is not this ugly thing that we have made of it; and you can appreciate its richness, its depth, its extraordinary loveliness only when you revolt against everything- against organized religion, against tradition, against the present rotten society, so that you as a human being find out for yourself what is true. Not to imitate but to discover- that is education, is it not? It is very easy to conform to what your society or your parents and teachers tell you. That is a safe and easy way of existing; but that is not living, because in it there is fear, decay, death. To live is to find out for yourself what is true, and you can do this only when there is freedom, when there is continuous revolution inwardly, within yourself.

But you are not encouraged to do this; no one tells you to question, to find out for yourself…, because if you were to rebel you would become a danger to all that is false. Your parents and society want you to life safely, and you also want to life safely. Living safely generally means living in the imitation and therefore in fear. Surely, the function of education is to help each one of us to live freely without fear, is it not? And to create an atmosphere in which there is no fear requires a great deal of thinking on your part as well as on the part of the teacher, the educator.

Do you know what this means – what an extraordinary thing it would be to create an atmosphere in which there is no fear? And we must create it, because we see that the world is caught up in endless wars; it is guided by politicians who are always seeking power; it is a world of lawyers, policemen and soldiers, of ambitious men and women all wanting position and all fighting each other to get it. Then there are the so-called saints, the religious gurus with their followers; they also want power, position, here or in the next life. It is a mad world, completely confused, in which the communist is fighting the capitalist, the socialist is resisting both, and everybody is against somebody, struggling to arrive as a safe place, a position of power of comfort. The world is torn by conflicting beliefs, by caste and class distinctions, by separative nationalities, by every form of stupidity and cruelty- and this is the world you are being educated to fit into. You are encouraged to fit into the framework of this disastrous society… and you also want to fit in.

Now, is it the function of education merely to help you to conform to the pattern of this rotten social order, or is it to give you freedom- complete freedom to grow and create a different society, a new world? We want to have this freedom, not in the future, but now, otherwise we may all be destroyed. We must create immediately an atmosphere of freedom so that you can live and find out for yourselves what is true, so that you become intelligent, so that you are able to face the world and understand it, not just conform to it, so that inwardly, deeply, psychologically you are in constant revolt; because it is only those who are in constant revolt that discover what is true, not the man who conforms, who follows some tradition

Fucking Fuck Fuck Fuck

Whoever thought of the word, “Fuck,” is a fucking genius. I like to throw it around here and there, when it is necessary. I say it in my head, more often than I do out loud. I write it a lot. I get a lot of crap for it which I tend to ignore. You don’t like my language on here, then don’t read my blog. You know what I don’t like? That my son got cancer. And died. That fucking sucks more than anything. When Ronan was diagnosed with cancer, it made sense to have bracelets made so people could show their support. I stayed true to who I was and what I was feeling, which just happened to be, “FUCK YOU CANCER!” It also made me laugh during the darkest of times, like when I was in a hospital for over 21 days straight, with my baby boy. Looking down at that bracelet, often gave me a good chuckle. I’ll admit it, I have a very dark sense of humor. I embrace this. I own this. Fuck you cancer is about as dark as you can get.

I can guarantee you, anyone who is dealing with cancer, no matter what type it is, wants to scream this. Most people don’t have the balls to put on a bracelet, especially when it is pertaining to their child; but why not? Because it is offensive to put the FUCK word out there when your child gets cancer? Says who? I say it is offensive to not stay true to yourself. I say it is offensive that children get cancer and die from it. I say it is offensive that my husband and I had to navigate our way through our son’s treatment, because nobody in the medical world knows exactly how to handle Neuroblastoma. I say it is offensive the way people say the word, Fuck, is offensive whom have obviously never lost a child. It’s a word. Get over it. Childhood Cancer. Now that is something to be offended by.

Your child dying from cancer? Your mom dying from cancer? Your sister dying from cancer? Your husband dying from cancer? Your best friend dying from cancer? Your brother dying from cancer? That is beyond fucked up. It is worthy of the fuck word being used. Stop being so afraid of the word Fuck. Embrace it. Saying the words “Fuck you cancer,” is much more satisfying than screaming, “Gosh darn you cancer! You killed my son!” Trust me on that one. There are bigger things in life to be afraid of. There are bigger things in life, to be offended by. If you are offended by the word, Fuck, it tells me that you are living your life in such a bubble, that you have to make up things to get upset about. It is absolutely ridiculous.

I made a nice version of the bracelets too. I don’t wear it, but my kids do. I only let them wear the Fuck You Cancer bracelets, on special occasions. Oh no. Are you offended because my 8 year olds know that word? I am offended that they had to watch their brother, die. I am offended by the fact that my 8 year sat with his little bro, 2 days before he died, and asked me why he was talking so sleepy and wanted to know when would he wake up, so they could play. I am offended that I had to sit there, look my child in the eyes, and tell him that he wasn’t going wake up and play again because he was going to be getting sleepier and sleepier. That really fucking offends me.

So, to all of you fucking fuck word haters out there. YOU OFFEND ME. CANCER OFFENDS ME. I know what it means to live a life and to have real things to be offended by. If you are going to let a word get you all hot and bothered; then you need to re examine what is really important in life. You need to re examine what it means to truly be upset by something. Because it is not worth it, to get so upset over a word. You don’t like the word? Word to your mother. I get it. You don’t like it, then don’t use it. But to get upset over somebody else using it, is just obscene.

I personally think the word, is awesome. Did you know that it is the only word in the English language that can grammatically complete, and stand alone in a sentence? Ex: Fuck, fucking fuckers fucked. It can be used as an adjective, adverb, adverb enhancing an adjective, a noun, as a part of a word, ex: one of my favs:::: absofuckinglutely, and as almost every world in a sentence, fuck the fucking fuckers. Bloody Brilliant!

You know what else I would like you to know?? Don’t judge a book by its cover. If you know me, in real life, you know that I am a classy broad. I don’t run around screaming this word just to hear myself say it. I am quiet, reserved, serious, and shy… until I am comfortable enough with you to show you the real me. That’s when the real fun begins. My truth is, my son got cancer and all rules flew out the window. If I want to have tee-shirts made that say “Fuck Cancer,” or bracelets made that say, “Fuck you Cancer,” that is my right, as a human being. That is my right, and who are you to say I shouldn’t be able to say what I want to scream at cancer everyday? The fucking cancer police?

Like I said, if you don’t like it, fine. I don’t really get that, but whatever. But don’t try to silence me. Don’t sit back and judge me. You haven’t walked a second in my shoes. It’s time to go and find a new hobby. One that is more offensive than the F word. Maybe you could get fired up about all the babies who sit in the hospital, with cancer, who don’t have any parents to hold them, because they have to work all day and night. Maybe you could be offended about all the babies who get cancer and die. Maybe you could be offended by parents like my husband and myself, who spent our lives doing everything right, only to have our precious son, die of cancer. Trust me. That is way more offensive than the F word could ever be.

Or maybe it’s time to let your guard down and figure out what’s the REAL reason, you are so offended by that word. Because it’s not lady like? Neither is sitting in a pool of blood because your child’s platelets are so low that you can’t get his bloody nose to stop. Neither is not being able to shower for 3 days because you cannot bear to leave your child’s side. Neither is screaming the FUCK word because you were just told that your child’s cancer is spreading and there is nothing more that anyone can do. Fuck ladylike. I’ll stop using the word, FUCK, when Childhood Cancer no longer exists. Until then, the FUCKING FUCKWAD can FUCKING FUCK OFF!!!!!!!!!!!!!!!!!!!

Actually, I changed my mind. I won’t ever stop using this word because Cancer killed my son. So unless you have a magic, purple fucking wand that can bring him back, I will be screaming this word until the day I die.

To all my lovelies. I love you all. Thank you for being so open-minded and not being offended by my truth. Sweet dreams. G’nite my little Ro baby. I miss you. I love you. I hope you are safe.

xoxo

If you are still offended after this picture, then you have serious issues and can fuck off in the nicest way possible.

Taylor Swift loves Rockstar Ronan! And I don’t love Obnoxious Complainers! So shut up!

 

 

 

 

Ro baby. I am trying to breathe tonight. I am trying to focus on all the yummy goodness that has filled my days. Because of you, and the effect you are having on the world. I actually had a lady come up to me today and tell me that I didn’t only change her life, but I am creating a movement. A movement, Ro. I hugged her. I cried. But what is new….. I’m always crying. Those were powerful words that she said to me, as she looked me in the eyes as I watched her eyes, well up with tears. I told her it was all you. Not me. Never me. Always you.

So, I am trying to let some things off of my chest because there are people who just don’t get this, or who do get it and just choose to ignore this and are not worthy of your story. They just are not. And I have to accept that. I cannot change everybody. I cannot change the person who knows your story, knows who I am but does not care. So, she sits in front of me and bitches about all the stress in her life, like the remodel of the 1 of her several homes. Complains right in front of me Ronan! And I am so pissed at myself tonight. I sat back and pretended like I wasn’t standing right there, as if I was invisible because I know if I let myself get pissed about the all of the asshole people in the world, that I am going to wasting a lot of time and energy on negativity. I have enough Inferno Fuckwad Bob in my life to go around for everyone. Do I really need to add to it? Do I really need to let stupid shit, get under my skin? No. But it does because I am human. And I know what it means to have real things to worry about such as just trying to stay alive. Every day I pray for death because the love of my life, DIED, of Childhood Cancer. I’ve got to come up with a new plan. And it cannot consist of the berserk fantasy moment I had in my head where I ripped this ladies hair out and told her to shut the fuck up because she has all of her babies and that is all that matters. I am going to have to take a less violent approach so I don’t get my ass shipped off to tent city with Sheriff Joe. It will maybe just have to be something like, “Oh, do you know Ronan? (slip her one of your little cards) Oh you do?(because everyone that lives in our very big but very small little city does) I am so glad. He is amazing. You know he died from Childhood Cancer, right? But gosh, I am really sorry that you are so stressed out over your home remodel. I hope it turns out to be beautiful.” Kill em’ with kindness, right Ro? Either that, or just choose to look the other way. Fuck that. I’m not looking the other way anymore. People need to wake up and stop bitching about such nonsense. Your house remodel, is NOT a problem. Your nanny quitting, is NOT a problem. Your nail breaking, is NOT a problem. Kids dying, everyday IS a problem. The dad just diagnosed with Lung Cancer, who is not a smoker, IS a problem.  All of the kids around the world, who don’t have homes or families, IS a problem. Not getting to wipe your babies sweet tears anymore, because he is DEAD, is a FUCKING PROBLEM!!!

Enough with the complaining about make-believe problems. Go visit a Children’s Oncology floor and then see if you can leave there, still bitching about your problems. Actually, do not go and visit this floor. The fact that you sat and complained in front of me today, is your fucking problem, not mine. You are not worthy being surrounded by all the beauty that shines off a kids Oncology floor. You are not worthy of any of the beauty that is going to come from Ronan’s story. Do you know what I heard today, asshole lady? I met the most beautiful family. Little Elizabeth Blair who has Stage IV Non-Hodgkins Lymphoblastic Lymphoma. She was talking about her bald head and how she doesn’t have blond hair, like her mommy anymore. Her mom just looked at her and said, “But where does beauty come from, Elizabeth?” Elizabeth answered right away. She said, “It comes from here,” and pointed at her HEART. Her heart ladies and gentleman. This 5-year-old knows more than most adults. This 5-year-old knows what is truly important in life. This 5-year-old is going to grow up to be an incredible young lady. I am pretty sure she would have anyway, due to the family that she is surrounded by. But now she has that extra sparkle in her eye, that most people do not. A sparkle in her eye, just like you did, Ro. The sparkle that is going to help to change this world. And hopefully make more people, stop complaining about stupid shit and doing something that will actually help to make a difference. Even if it means they just make their kids’ lunches for school and give the nanny/housecleaner, the day off. So be it. It’s a start. Baby steps can be done. They can be done and they can turn into something much bigger.

Maybe it starts with giving the Nanny the day off, paid of course and actually driving your kids to school, yourself. Then guess what? The next thing you know, instead of spending Thanksgiving basking in too many pies and food to eat, you and your entire family, spend a few hours, in a soup kitchen. Pretty soon it starts to set in that, “Oh my god. I am so thankful. I mean really thankful. I am thinking about that family today, who is having to spend their first Thanksgiving, without their Ronan. I have all of my kids. They are healthy. I want to be a good person. Not just a good person, but a REALLY good person. Because I am thankful. And blessed. And because so many people, are not. But deserve to be. So I am going to work really hard, to try to make a difference somehow, in this world.” Or maybe not. Maybe you would just sit around Thanksgiving, obsessing about everything you are going to buy on Black Friday. Obsessing about the Jimmy Choos that are going to go on Sale at Saks. This is probably the case. So in that case; fuck off. But I really hope your contractors are not late, AGAIN! I mean really, they were an hour late and you screamed and yelled at them because that is so much of a real problem? Those paid employees can be so rude sometimes. I don’t know who they think they are. The sense of entitlement of those blue-collar workers, is just beyond me. Shut up lady. Shut up and fuck off.

Oh Ro. Sorry your little post got Hijacked tonight. I just had to get that off of my chest. UGH! I have ONE more thing to say. Hang tight, little man. DEAR PEOPLE WHO STILL HAVE ALL OF THIER CHILDREN- Please STOP. I do not want to hear anymore, “Oh… Ronan is happy. He is in Heaven. God is taking care of him, you don’t need to worry.” I’m warning you NOW. If I have to hear this one more time, it is not going to be pretty. I get that most of you mean well, but you also have all of your kids. You get to watch them play soccer, you get to hang up their art work, you get to kiss them goodnight and tuck them in bed. You get to do all of those amazing things, therefore you do not have the right, to tell me my child is in a better place. Because I can tell you, I can fucking guarantee he is not. He is not here, with me, which is the only place he belongs. So please, keep your he is with GOD and in a better place comments to yourself. It may bring you peace, but it only makes me angry. Pray for me all you want. Bring on the prayers. But stop saying the things above. I’m going to start carrying a weapon with me, like Silly String. The next person that says this to me, is going to be douched in Silly String. You’ve been warned.

On to the amazingness, RO! Moving forward. Breathing. Inhaling the smell from your GiGi that is covering my face. It smells like you. Let’s start with the darling Taylor Swift. That’s a good story to end with. Or how about the “Fan Mail,” that I am getting sent to Katie’s Shop, like the Foster the People signed concert poster. Ummm… Hello lovie who sent me that. So rad. Thank you. Or all of my Ro Baby Maya’s Mafia Fans whom I met today, by chance, who just popped into Katie’s store to buy bracelets. So sweet. I loved meeting a few of you today. The love you have for us is so inspiring. The awaking I am seeing in these beautiful people, Ronan, is very moving and powerful. Just like you.

Crap… sidetracked! I just have too many great things to blab about! Back to T’ Swizzle. Who told her about you? Because I am so very sure, it was one of your little Fairy God Mothers down here. I was contacted by her event manager. “Taylor would like to extend two tickets to her show, plus a meet and greet with her, before hand. Are you available?” Was I available? Why yes, of course. I knew with all the amazingness going on, that I wanted to see if I could work my magic just a little. I have no shame, so I asked for 5 tickets instead. Poof! My wish was granted. Now, I just had to come up with a plan to reward some very special people in a very special way. I told Katie about the email. I knew the two of us, would come up with something very yummy and delicious to do. We thought about having people bid for the tickets, to raise more money for your foundation. We knew the tickets, could have gotten a lot of moolah. But that seemed to be defeating the purpose. We have been watching how hard, our little Rockstars have been working, to raise their 200 dollars to model in the show. Then Katie showed me this FB Wall post written by Elizabeth’s mom, the little girl with Stage IV Cancer.

Oh my SWEETNESS! Holy Willy Wonka! Today was the absolute BEST!!! Today we ran, walked, skipped, piggy backed, wheeled and twirled a 5K to fight Childhood Cancer at Grand Canyon University “Pinkalicious Style!” What does “Pinkalicious Style” look like you ask? Well, let me tell you we had everything from argyle to piggy tails, rainbow to more rainbow and lipstick! You can’t forget the lipstick. And oh my, the most AMAZING, “Beauty comes from within the heart” t-shirts designed by our multi-talented long time very special friend Chris Wahl!! He designed the most perfect shirt for my most perfect little girl. E’s Team consisted of not only the most incredible besties that a girl could ask for but also her past preschool teachers, babysitters, and new friendly faces of the kindest individuals who truly give the meaning to our team shirts. Beauty comes from within the heart. Team Elizabeth showed genuine beauty today. Each and everyone of us crossed that finish line in true pinkalicious style whether it was by wagon or walking, running or riding, age 5 or age 50. Medals were made and miles were gained all in the fight against childhood cancer. And well, Lymphoma, it can kiss our determined pinkalicious butts! Because we rocked it out there today! But, that’s not all. The kids also rocked it in our front yard today. They ROCKED it GOOD! As promised, Elizabeth, Kate and Bryce were fundraising full force with their Super Duper Candy Scoop Shop featuring a Rainbow of candies and Rainbow Manicures. Although, there was no rain, they each had a pocket full of sunshine and were ready to make things happen with a rainbow of colors in Pop Rocks, Gumballs, Lemonheads, cherry rainbow and pink lemonade Swizzle Sticks, gigantic Jaw Breakers, Gummy Bears, rainbow heart cookies, and rainbow manicures. Have I mentioned Elizabeth LOVES rainbow anything? The proceeds of todays fundraising efforts will benefit The Ronan Thompson Foundation. The Ronan Thompson Foundation and The Garage Boutique for Kids are hosting a Rock the Runway Fashion Show Event. My 3 kiddos are all participating. Although they may not all model, they all 3 are certain they want to help raise money to help in the fight against Pediatric Cancer. These kiddos made BIG BIG accomplishments today! I would say a top accomplishment for each of them to date. Their goal for today was to raise $200.00 each for a total of $600.00. Are you ready for this? Are you ready to hear what my kiddos raised in our front yard to fight Pediatric Cancer? $1019.64!! In three hours, these determined children fought for their sister, they fought for their cousin, they fought for their friends, they fought for your family, they fought for our family, they fought for Ronan and all the other children who have won or lost their battles to childhood cancer. They fought hard and they fought proud! My husband and I are so completely impressed with how busy these little bees worked today. But we are not surprised at the results! You, our community, our family of friends are more than generous. We had a complete stranger drive up and give $100.00! Oh my SWEETNESS! We have a toothache tonight from all the sweetness. We are blessed, thankful, and just so happy for all the kindness, love and of course beauty that comes from within all of your hearts. So whoop there it is! $1019.64 going to The Ronan Thompson Foundation. You are beautiful, The Blair’s P.S. Elizabeth went back to school on Wednesday!!

It was a no brainer. We wanted to extend the invitation to The Blair Family, to go with us. I had Katie call them today. She said it there were tears all around. My heart fluttered. I had not met The Blair Family, until today. Until after this phone call was made. About an hour later, they came bouncing into Katie’s shop. I hugged Elizabeth’s mama tight and we both cried a little. I rubbed the top of Elizabeth’s smooth, bald head. It made me miss you so much. Turns out, The Blairs, LOVE Taylor. They already had tickets. They gave their tickets to some friends and Elizabeth’s brother and Daddy get to go as well. We are so exited to take Elizabeth, her mama, and older sister, with us- to meet Taylor and to sit in some really good seats. It is going to be an amazing night. That Taylor, has a heart of gold. Just like so many of the lovelies that seem to be coming out left and right, Ro. They all love you so much. Amazing things are happening, my little man. All because of you.

Ro baby. I wish I could tuck you in but I can’t. So I will cuddle with your blanket instead. I will go to sleep, without my Ambien because the pain is something I need to be in. I cannot mask or cover it up. I will fall asleep with my tears soaking my pillow because it is where I need to be, now. I love you so much. I miss you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Your Sparkle will Shine Forever

I’m not sleeping. I can’t. Could you? Could you sleep, without being able to kiss your baby goodnight? Knowing that the place that he once slept, is empty. Knowing that his little closet, filled with his clothes and shoes, will never be worn by him again. Could you sleep? Could you drift off into a peaceful place even for a few hours, to escape the nightmare? For me, it is physically impossible.

So, I sit here instead. Wishing so badly, that he would come running into my room in the middle of the night, just because he missed me. Wishing to be able to complain about the sleepless night I had the night before, because he was up all night, with just the flu. Wishing I would be exhausted tomorrow, because I had him to take care of all night long. Not because of the fact that I cannot sleep, because he is dead.

DEAD.

MY CHILD IS DEAD

What that does that even mean?

I GOOGLED IT. Too many raw things appeared. But nothing as raw and painful of having you not here.

I FOUND THIS. IT IS AN INTERNAL SCRIPT FOR PARENTS WHOM HAVE LOST A CHILD. What they may be thinking and feeling.

I concur.

  • I have failed my child.
  • I can’t live without seeing my child’s face.
  • I can’t live in a world where my child is a statistic now.
  • No one needs me now. My life has lost purpose.
  • My future – as a mother, as a father, as a step-parent, as a grandparent – died with my child.
  • I have regrets for things not said/done/realized before the death.
  • I should have prevented it.
  • I am alone. Other people grieve, but cannot share MY grief or make it less. They do not understand the depths of my grief.
  • My energy is gone. My will to live is gone. All around me, I see and feel the sadness and emptiness.
  • The world failed me. God failed me.
  • I am only living now for my other (children, spouse, partner, family, friends, profession). I am no longer living a life worth living for me.
  • I failed my child. (It usually begins and ends with this)
I know all of this. I believe everything above to be true. It is my life every single second of the day. I read the words. They make me sad. I take a break from Googling all things morbid, twisted and dark. An email pops up on my screen. I open it. I read it. I smile. I laugh. I cry. I have goosebumps. I feel alive. It’s from somebody I don’t know. There are a lot of those somebody’s now. This somebody made me feel proud of who I am. This somebody reminded me that although your little physical body is gone, Ronan. Your sparkle will stay here, forever. Thank you for this, to this M.o.M.M <3

Maya,

Im sure you get HUNDREDS of msgs on here as well as thru your email, FB, and your foundation but I feel like I need to write to you. You may not read this but I want you to know that Ro and YOU, Ms.Mama Maya are MAKING SHIT HAPPEN!!!!

I was not sent to your blog by a fellow reader, I dont know anyone personally (except for EVERYONE I have turned on to the blog since) that followed your blog or knew you personally, no one i know even knew of you or Ro before May 27th 2011 when I was sitting in the living room and happened to be browsing came across a post that had just been written, titled ‘Learning how to Live Half-Alive’. I had to click on it and see just what this post was and if it STOOD up to some of my fav lyrics.

Well, imagine my shock when not only did the blog stand up, it OUTSHINED anything i have EVER in this world even imagined of feeling. Tears sprang to my eyes, I felt like I had been punched in the gut, the wind knocked out of me, my mind could not wrap around the possibility that this was REAL LIFE and not just a blurb for the latest fiction novel from Jodi Picoult.

After reading that first post I clicked on the Baby Ronan link and within seconds had tears POURING down my face. I instantly had to know WHO this baby boy was that had ALREADY captured my heart? Can you believe that Maya? My whole sense of being ACHED for this baby whom I had NEVER even seen a picture of. I felt numb, my head was aching. I couldn’t believe that YOU were somewhere in this world hurting the way i was X’s a GAZILLION. I couldnt even (and still can’t) IMAGINE a pain that fierce. Right then and there The Thompson’s became a part of my family and heart.

My friends on my fb are re-posting my posts on childhood cancer, people are asking my kids and myself about our RockstarRonan bracelets, to which my 6-year-old replies, Ronan is the BRIGHTEST STAR IN THE SKY BABY!! http://www.rockstarronan.com. He’s a lil walking bill board for Ro and this horrible disease.

Next FUCKTEMBER I will be walking around with Info cards about childhood cancer and the BIGGEST sharpie i can find so that EVERY breast cancer sign I see gets graffitti’d on with KIDS GET CANCER TOO!! (sorry had to vent that it has been driving me crazy seeing Breast cancer start gearing up for OCT and trying to take the light from these BABIES who put all of their faith and trust into ADULTS who are supposed to be caring for and watching out for them?! and yet MOST turn a blind eye because it’s just too ugly. . . I honestly would not like to know the person who can look at RO, hear his story and simply walk away and DO NOTHING??)

I know that I have been rambling in this letter to you and I’m sorry. I really just wanted to let you know that you Ms. Maya and your A M A Z I N G baby Ro have touched the heart of a random stranger thousands of miles away and I will be by your side in this FIGHT of kicking cancers ASS every step of the way! I hope that one day our paths cross and I can meet you and hear some ‘spicy’ monkey stories, golf in some funky TUTU’s, blaring some Katy Perry while doing ALL things ROCKSTAR (:

Im so happy to read when you have a ‘good’ day, that means that even just a LIL bit of what I have been praying and wishing for you is starting to break thru the HELL you are living.

Love,

A MoMM <3333

PS. My grandma was THE BEST grandma in the WHOLE world!!! There is not a day that goes by that I dont think of her. Since she is no longer ‘here’ with me I KNOW that she is with Ro and since she was the best in the whole world she is DEF the best in ALL of the HEAVENS and she is taking care of Ro for you until you can. . . and she’s a stickler for brushing teeth and a SOFTY when it comes to rocking babies and snuggles <3

Bubbles galore. Just for you. Who cares that Quinn flooded everything? He did it, for you.

Magic Medicine, Day 4 and Day 5…. Round 7

What a beautiful, rainy day. My favorite kind of days. Being from the Pacific Northwest, I miss days like this so much. Ronan woke up happy as a clam, excited to know he was going home later this afternoon. We played in his bed for a little bit and then we went down to the cafeteria so I could get him his slurpee mix to put his oral chemo in. We came back to our room and talked to the nurse about discharge time and specific instructions as far as being back at the clinic tomorrow for the last day of cycle 7. Dr. Maze came up and sat with us for a while, played with Ronan, and we talked about the upcoming trips we are taking with Ronan to visit a couple of other hospitals. I had no idea, but his brother is the head of Anesthesiology at UCSF where we will be visiting on Wednesday. He sent him a message to let him know we were coming to the hospital to meet with Dr. Matthay. Ronan is excited to go to San Francisco and we have turned it into something really positive and exciting. I contacted somebody we were put in touch with whom works for Lucas Films. Lynne, has so graciously set up lunch on Wednesday over at the studios of Lucas Films and a little tour for Ronan. He cannot stop talking about going to visit Star Wars and New York Miss Macy, who just moved to San Francisco. It is going to be a short, productive trip. I am of course, over the moon about getting to see my love, Mace 🙂

I started this post yesterday but didn’t finish it last night due to falling asleep at 9:00 and sleeping all night long. It’s a miracle! I have not done that since before Ronan was diagnosed! My dreams were not even that horrific. I, of course, dreamt about Ronan and his cancer…. but my dreams were more peaceful than they have been in a long time. We went home yesterday around 3:30 and we are now back at the clinic for Ronan’s last day of this round of chemo. Liam and Quinn have the day off from school and Quinny is here with us while Liam is with Mimi and Papa. We will be finished here around 3 and Quinn is being such a good little helper. It was fun to introduce him to all of the people  here who are such a part of our lives now. He hears Ronan talk about them all day long and I think it was good for Quinn to put the faces that go with all the names. It was also good for Quinn to see what we do on a day-to-day basis while we are in the clinic. He likes to know what is going on with Ronan. Ronan is of course over the moon to spend the day with one of his brothers.

Fernanda came by the clinic and dropped me off a coffee (which I proceeded to knock over and spill) She called that, good luck. I of course chopped it up to nerves. I’m scattered today; nervous about meeting with the doctor in San Francisco. Dr. Eshun already told me that he spoke with Dr. Matthay and she is going to suggest we do MIBG treatment as soon as possible. I already knew this. Everybody is going to be biased in the way they want to treat Ronan’s cancer. But nobody really knows the correct answer. This is beyond fucked up to me. The fact that Woody and I are going to have to make a choice in regards to Ronan’s life and part of it is going to have to be based on a leap of faith. No parent should ever have to be put in that situation. I’m not one to get political one here because that would stir up too much shit, but HELLLLLLLOOOOO WHITEHOUSE!!!!!!! With all the money that you are spending on the world….. why don’t you throw a WHOLE bunch of it at Childhood Cancer so we can actually find a cure for this horrific disease that is killing MILLIONS OF CHILDREN?!?!?!?!?!?! They are our future and with the lack of funding, you are throwing away the lives of amazing children who would make this world a much better place.

I came across a quote by Mark Twain today and it made me smile. “There are three kinds of lies: lies, damn lies, and statistics.” I said at the beginning of all of this I was going to stop listening to the statistics for Ronan. I stand by what I said. He is not a statistic, he is my child. Many people do not want to associate cancer with children. It is just an unthinkable horror. It’s easy to dismiss the idea by saying, “This will never happen to my child.” Unfortunately, it happens more often than we’d like to believe. According to the National Childhood Cancer Foundation, one in every four elementary schools has a child with cancer. While many children are cured, there are still many children who will die.

When you lose your parents you are an orphan. When you lose your spouse you are a widow(er). There is no name for a parent who loses their child because it is just too unspeakable.

Why is the happening to my perfect little boy? Because there was never a boy born who is more beautiful in this world; so now he has to pay the price? I want an answer for something I will probably never know and it’s not fair. I want someone to be mad at and someone to blame, but that person does not exist. If I can’t have something tangible to blame, I want a cure, god damn it! I don’t want to have to put the life of my child on the line and trust my instinct in choosing his path. This is beyond unfair. It is sick, inhuman, and cruel. He does not deserves any of this! NO CHILD DOES! For all of you out there who are compassionate human beings; and I know you are because you continue to read this blog and pray for Ronan….. I dare you to come and spend the day at a hospital full of kids who have cancer. If your life is not affected, if you can walk away from all of this and never look back, you are reading the wrong blog. For those of you who are already doing something, big or small….thank you. The time is now to make a difference and your wake up call is here. It’s time to do something, whether it be to volunteer, to make a sick kid smile, or to help in raising awareness in any way possible. I wish I wasn’t getting my wake up call in life because my child has cancer. I wish I had someone telling me to do something. I would have listened if I had known this world existed. I lived a blind life full of a false sense that everything was perfect in the world, because my world was perfect. WHAT A BIG, FAT, LIE.

An innocently good day turned into a not so good night. Let’s see….. I threw up the one little thing I tried to eat for dinner, went to try to get gas in my car (had to leave due to not being able to get the gas to pump due to my head spinning) and then went to Target were I proceeded to abandon my cart due to almost having a severe panic attack in the store. Fernanda called just as I was walking out and I started bawling to her. She was like “What at the fuck are you doing trying to get gas for your car?” “That’s what we are all here for!” You know you are in trouble when getting gas seems overwhelming. In the mist of my bawling in the car before I left the parking lot I texted my Mr. Sparky eyes whom is always telling me that I am doing a great job at handling everything and I need to stop being so hard on myself. I said to him, “People that are doing o.k. do not have to leave in the middle of shopping at Target because they cannot focus on what they need to get. I am not o.k. and I cannot believe I have to make a decision in regards to my son’s life when nobody knows the right answer.” 2 minutes later, he called and basically talked me down from the ledge and sat on the phone and let me cry. He reassured me as he always does that we are doing everything right in our power and we are going to make the best decision for Ronan. He then told me how I am alright, I had just had a shitty day and tomorrow will be better. He also told me that anything I needed at Target, I really didn’t need anyway. He calmed me down as he always does with his wisdom and words. After talking to him, I was able to go and get gas for my car without any problems.

I came home to a hectic house of boys’ gone wild. My 3 little guys are so happy to be together, that it is hard to get them calmed down for bedtime. Lots of laughing and playing just as it should be.  San Francisco tomorrow. One more piece of the puzzle to put into place. Will it fit or not?? Only time will tell.

G’nite my loves. Thank you to Fernanda, Stacy, and Mr. Sparkly Eyes for being there for me tonight. Your words helped me through the night. I love you.

xoxo


There’s beauty in the breakdown

Ronan and I headed to PCH this morning for his clinic visit and audiology test. Once we got to the clinic, I could tell Ronan had been put through enough this week, so I ended up calling audiology and rescheduling the rest of his test for next week. Enough is enough. It was a good thing because Ronan ended up needing a platelet transfusion and it took forever today. We were at the clinic all day long. I am so over this week. Next week is going to be just as busy. We are at PCH everyday except Friday. If I think I’ve had enough, imagine how my 3 year old is feeling. He’s such a good little guy though. He has been going with the flow with everything; except the audiology test. We’ll deal with that next week. We are going to spend this weekend letting him be a kid and enjoying being at home.

Our weekend plans are busy but low key. I am going to hot yoga with my friend Stacy in the morning. So looking forward to that. I need to get some of this toxic energy out of my body. Liam and Quinn have 2 basketball games tomorrow and their cousin Luke is going to come over and stay the night. All 3 boys’ are so excited, they beyond idolize their older cousin. We love having him here, and he is especially great with Ronan. I would love to sneak in a hike up Camelback but we shall see. I mainly just want to enjoy being at home with all of my boys. Our time together is so precious.

I just got some exciting news tonight. My dad, whom I have a very “special” relationship with, as it is not a normal daughter/father relationship. It’s complicated, it’s sometimes strained, but always honest to a fault. My dad, after being divorced for 16 years, got remarried. I never thought I’d see the day but I couldn’t be happier for him. I always pictured him growing old alone and the thought of this always made me very sad. He has been with the same woman for about 10 years now and I adore her. They finally tied the knot:) So happy for them both and I told my dad tonight that he’d better not screw it up again and he’d better take good care of her. I hope he listens. I have a feeling he will. She knows him better than anyone and knows just what to expect. My dad rarely reads this, but if you are tonight…. Congrats again to both of you. You have no idea how happy it makes me to know that someone will be by your side to take care of you, and in turn you will have someone to take care of as well. Everything is as it should be for just his minute in time and I am very thankful.

So, are you ready for “The List?” My friend, Fernanda, sent it to me today. It is something that she found while researching isolation for us. It’s a little overwhelming, but I have such a good army of people who are willing to do anything and everything for us, that I know it will be o.k. Thank you so much to all of you who are offering your help; you have no idea what this means to me. I can do this, Ronan can do this, we can do this. It is a glitch in time and I am going to make this positive in every way I possibly can. Nothing but the best for my baby; we are going to take this the crummy situation and make it as fun as possible for him.

I am going to make this list my bitch!!!!!!!! Let’s do this!!!!!!

Home away from home

Probably one of the most difficult emotional aspects of the transplant process is all of the time you will spend away from home if you don’t live near the hospital. Your transplant social worker or other hospital coordinator will help you arrange for housing if you live far away. During the weeks of outpatient transplant recovery most hospitals will require your child to be within a 30 minute drive (with traffic) from the hospital in case of fever or other medical issues. Although it’s comforting to be close to your hospital, chances are you’ll end up staying in a facility provided by your team, such as a Ronald McDonald House, local hotel, or temporary apartment. Some families are lucky enough to have friends or family near their hospital and able to accommodate them. Check with your child’s transplant team before making any arrangements, as individual hospitals have various guidelines and preferences for where a child may stay during the transplant process. Such guidelines relate to disease-control issues and are imposed with your child’s safety in mind.

Wherever you are, it isn’t home of course. That said, there are many ways to make your surroundings feel more comfortable and familiar.

Although lots of little knick-knacks can get dusty and are usually discouraged, bring a few favorite items from your child’s room or your home.

Consider laminating posters of your child’s favorite characters or movies to put up in the transplant room. Laminate family photos (easier with a copy printed from your computer if you have digital photos). Laminated items are easy to clean and make a better choice than framed items (usually not allowed on the walls because of nail holes).

If it is not provided, consider bringing a small lamp with a soft light. This can make any room more comfortable.

Invest in a portable DVD player or CD player if the transplant room will not contain a TV. If you’re staying for a couple of months, consider bringing a small TV if it is allowed (it may not be because of noise control).

Bring your child’s favorite towels, sheets, pillows, and blankets.

Bring washable stuffed toys for your child’s bed.

Consider bringing an area rug or play mat for the floor to soften up the room. Make sure it is easily washable.

If it isn’t provided, bring a shower squeegee. You can get one of these at Target, Wal-Mart, or the like. It will help control mildew in the shower.

Since food for caregivers is usually not allowed in individual rooms (to avoid germs), bring plenty of familiar snacks and foods to keep in the communal kitchen. Check with the medical team about any food since some are prohibited during transplant.

Preparing for isolation

Although your stem cell team will help you prepare, getting your child and yourself ready for inpatient isolation can be stressful and intimidating. Guidelines and rules for isolation stay can vary greatly from hospital to hospital; however, some suggestions and general information are provided below to help you get ready.

Insist that you be allowed to inspect your child’s isolation room before he/she is closed in. Check that every surface has been properly cleaned, sanitized, and repaired. Look in the corners, closets, etc. (Some hospitals go so far as to clean these rooms with toothbrushes and re-paint the walls and re-wax the floors between each patient.) Don’t be afraid to point out any dirty or damaged areas of the room. Check that your child’s bed is comfortable, safe, and clean. You don’t want to have to break isolation to get your child a new bed or have something repaired later.

All your child’s clothing will need to be freshly washed and completely dried in a dryer (no air drying) and placed in plastic sealable bags. This is for germ control. Hefty and Glad make oversized bags that make the transport a little easier. Once you get to your child’s room, these clothes will probably need to be removed from bags before entering the room.

You will also need to be freshly showered and dressed in freshly laundered clothes when you arrive at the hospital. Some hospitals will require you to shower again before entering your child’s room. Some will allow you to shower at home but ask that you not make any stops (gas station, grocery, etc) before arriving. If you do, you may be asked to shower again. Leaving the hospital may mean another shower (even if it is to just get a Starbucks). Remember, it’s all for your child’s safety.

Your child’s toys will probably need to be new or sanitized. Toys that can be completely submersed in water by either washing them in a sink or a washing machine can usually come in the room. Some hospitals will purchase new toys for children undergoing transplant, so check with your transplant coordinator before you run out to buy all new stuff.

Remember to sanitize and wipe down anything you plan to bring into the room. If it can go in the washer, put it in the washer. If it can go in the dishwasher, put it in the dishwasher. If not, seriously consider whether you need it or not. Check with your team about electronics, as anything electronic or with batteries will probably need to be cleaned by the environmental department of your hospital or otherwise may not be allowed. (Think laptops, DVD players, portable game devices, etc.) Notebooks, books, and other paper materials will probably need to be new or cleared by your transplant team.

Your child’s meals will need to be specially prepared, and the hospital will have a special menu for your child. Make sure your child’s meal comes wrapped in plastic. Check to see whether or not you can have a meal delivered for yourself as well, since you probably won’t want to leave your child to get a bite. Also check before you order any takeout. Some foods may be prohibited altogether in your child’s room.

As noted above, try to surround yourselves with familiar things — photos, posters, pillows, blankets, towels, etc. It may mean a little extra laundry for you, but it will help your child feel more comfortable. Rugs will probably not be allowed.

Make sure you purchase new toiletry items for your child- and COMPLETELY discard the old ones — don’t save them at home for use after transplant, because your child’s immune system will not be normal for a long time. These items include toothpaste, hand soap, toothbrush, nail clippers, lotion, deodorant, etc. Anything that has touched your child’s skin, hair, mouth, nails, etc. should be replaced, unless it can be washed or totally submersed in water (like a comb).

Bring a lot of straws and disposable cutlery for yourself, and don’t share with your child from your plate!!! This is not a time to be environmentally conscious or conservative. Don’t keep leftovers or leave food out for more than an hour. Don’t save a napkin from your takeout bag that wasn’t used. Germs are a totally different thing for your family now.

Consider bringing your own Swiffer and pads. Bring lots of anti-bacterial wipes and go over the computer keyboard, phone, door handles, counter tops, bed trays, buttons, blood pressure cuff, bed frame, and thermometer handle several times a day. Although the room should still be cleaned daily by the custodial staff, you may want to go over it yourself. The room CANNOT be too clean!

As convenient as it may have been during your child’s initial rounds of chemo, DO NOT share bathroom facilities with your child. Use the parent restroom outside your child’s room when possible. If your child does not use the toilet, make sure you wipe the toilet/sink after every use.

Be extremely selective about visitors, especially children. Your hospital will have special visiting policies during transplant, but be extra vigilant yourself. NO ONE (including you) should be in your child’s room if not feeling well. Young children (even siblings) should not be in the room at all (as they are less likely to report not feeling well). The smaller number of people you allow in, the better. Your child can get sick very easily during this time.

Insist that cleaning staff, food service staff, nursing assistants and any visitors entering your child’s room wear gowns and/or masks. Anyone entering your child’s room should ALWAYS wash their hands with soap and dry with a paper towel. If ANYONE coughs, sneezes, or sniffles in your child’s room, insist that they leave immediately. Small germs can cause big problems during transplant.

Some medical issues during transplant

Drugs. Your child will probably be taking several different drugs before, during, and after his/her transplant. These drugs are primarily administered to prevent viral, bacterial, and fungal infections, which can of course be very dangerous to your child during this time. Some of them don’t taste very good, so experiment if possible with your pharmacy’s flavoring system. Choose something that generally tastes good to your child, or whatever is most likely to go in and not come right back out. Get into a routine for administering these drugs — keep a schedule, checklist, calendar, or timer set, as each one is probably going to be administered at different times. Eventually you will be able to wean your child slowly off of each of these drugs as his or her counts begin to recover.

Nausea and fatigue. Not surprisingly, nausea and fatigue will be common for your child during transplant, as his or her body will be severely immune-suppressed. Expect lots of naps, easy fatigue even in low-activity situations, and overall crankiness while your child’s counts are recovering.

Food. Make sure you are fully-informed by your child’s medical team about food restrictions. The avoidance of fresh fruits or vegetables, deli meats, some breads, buffets, fast foods (unless freshly prepared), yogurt and some other dairy products, and tap water will be among the many restrictions for your child. Food also must be prepared in accordance with certain precautions, so make certain you understand all the requirements. Know what is safe and what is not. These restrictions are for your child’s safety, and shouldn’t be taken lightly. Some teams will refer to the rule “packaged, processed, frozen” as a guideline for foods for your child. As disgusting as it sounds, most of these foods are safe and should be the basis of your child’s transplant diet. If you’ve been lucky enough to avoid an NG tube or TPN before now, you’ll probably become familiar with one during transplant. Since most children don’t eat or drink for several days or even weeks during this time, the provision of nutrition by IV infusion is likely. Both options have their pros and cons, so discuss both with your team so you can make the best decision for your child.

Skin. Shortly before your child’s isolation, he/she will receive the final round of chemo. These high- dose chemos come with some added precautions to protect your child’s skin and internal tissues that you probably have had to experience during induction chemo rounds. Again, discuss the requirements and side effects of these drugs with your team. Some of the protective precautions taken may include: use of a Foley catheter during the duration of the Cytoxan dose; 4-6 hour bathing

intervals (round the clock) during and a couple of days after a Thiotepa dose; frequent mouth care with lidocaine or similar mouthwash to counteract mouth and GI sores that accompany several drugs (ACT or lidocaine-free mouthwash helps for a young child that cannot spit yet, and offering frequent popsicles before onset of mouth sores help to reduce the incidence and pain); protective creams (also for the skin burns that can accompany Thiotepa- ask for the Remedy line if your hospital provides, otherwise ask other parents what they used). One cancer family concocted their own recipe — equal parts Kaopectate, A&D ointment, and Aquaphor cream. Mix it all together in a big bowl, put it in a squeeze bottle (like a shampoo bottle), and rub on diaper area and any skin fold areas where irritation occurs. Keep away from the eyes, of course! Even if your child is out of diapers, his/her diaper area will be very irritated for some time. There are several creams that parents have found to work well during transplant. Dr. Smith’s Diaper Cream, Flander’s Diaper Ointment, or the homemade version mentioned are all standard choices. Be prepared to try lots of things until you find what works for your child.

Pain. Your child will most likely be on morphine or other pain control (either PC or continuous) at some point during the isolation period. This may seem extreme to us, but it really does help control the continuous irritation from mouth and GI sores, as well as the sometimes severe skin irritations. If your child is old enough, he or she may be able to control the dose, and the pump may be put on a continuous flow for some children. The doctors will slowly wean your child from the pump, and most children must clear the pump before leaving the hospital.

Keeping your family together during transplant

It’s hard to keep your family together during this difficult time, especially if you are traveling to a distant cancer center, if there are other children in the home, or if one or both parents still need to work. Having a support system is very important. Many times neighbors, relatives, and friends will take turns with your other children. As much as you would like to help them with their every day activities, it may not be the best solution at the time. Because there are so many disease-control issues with your transplant child, you want to try to minimize the number of people who come into contact with him or her during this time. As much as possible, your child’s only contact other than the medical team should be you and your spouse. Many hospitals will also not allow young visitors when your child is in isolation. Keep this in mind, and be sure to talk with your team before bringing siblings to visit in the hospital.

While your child is staying at a facility, hotel, or friend’s house near the hospital (either before or after isolation) consider bringing siblings to these places to visit and/or stay the night. Most of the time accommodations can be made, although not usually every day, when siblings want to visit.

Also think about trying a web-cam service to keep your child in touch with siblings, other family members, or friends. Someone at the hospital may be able to help you hook up this service, either on your own laptop or on one loaned by the hospital. This way your child can chat live with his or her family and friends. It works out great for Grandma, too!

Older siblings might enjoy keeping a journal or tape-recording themselves for your child to read or hear. If your child is old enough, he/she may want to journal back or tape-record a message back. Hearing familiar voices is also good for little ones, as they are very responsive to familiar voices.

Keeping yourself busy in the hospital

There are many things that you can do to keep your sanity while you’re inpatient with your child. Although not always the case, some children sleep A LOT during transplant and may even be unconscious for periods of time. Although this may be scary for you and your child, it is generally normal and will pass. In the meantime, you’ll have to find something to keep your mind busy. Since you probably won’t want to come and go from the room very often (minimizing contact with germs), you should bring along lots of stuff to keep you occupied. Some suggestions are:

Magazines, books, crossword puzzles

Laptop computer with internet access (sometimes hospitals will loan one to you)

Movies

Sketch pad or journal

Crochet, knitting, or scrapbooking

Hand held game system (may sometimes be loaned by the hospital)

Healthy munchie snacks (nuts, popcorn, etc.)

A new address book to fill out

Remember that your child’s toys can also be therapeutic for you- coloring and crafting have actually been shown to reduce blood pressure and quiet the mind!

Keeping your child busy in the hospital

You will need to bring some things from home to keep your child busy and happy while in the hospital. Many hospitals that offer transplant procedures do a great job of making your child’s room comfortable and homey, and provide toys and other items to help entertain the child. Ask to speak with a child life specialist or social worker BEFORE isolation to see what can be done to help your child’s stay more enjoyable. Remember that he or she will be very tired and may not feel well enough to play or do any activities. This doesn’t mean you shouldn’t try! Each day, encourage your child to get out of bed if possible, read, interact with you, watch favorite videos, bathe and change clothes, eat or drink, and walk. There will be some days that your child will not be able to do any of these things, but daily encouragement and motivation will help your child recover. Here are some suggestions:

Bring new board games or puzzles.

Buy or rent new movies or movies your child has been wanting to see.

Encourage play that gets your child moving and out of bed — bubbles, window markers, floor activities, tents, ball pits, video games like Wii, anything that might encourage your child to move! Most hospitals are supportive about bringing whatever you think might help your child. Just make sure it is either new or properly sanitized first.

Many hospitals will stock your child’s room with age appropriate activities, new toys or games, and other favorites based on information you provide about your child. New things are always a nice distraction!

Talk about the view with your child and encourage him or her to get up and look out the window. Even if you can only see a wall, sunlight and a busy alley can even be exciting.

Keep a calendar of your child’s activities and status each day. Display a large classroom calendar (you can get one at a teacher supply store, make one yourself from a poster board, or even ask the hospital for one) and keep track of your child’s days inpatient. Encourage him/her to decorate it too.

Remember to be happy and upbeat as much as possible around your child. Even on the toughest days, being positive can help your child feel better.

Preparing your home for your child’s return

Preparing your home for transplant is a big job. Once again, check with your child’s team as every hospital’s guidelines are different, but here are some suggestions:

At the very least, have all carpets in your home shampooed, steam-cleaned and sanitized. If you are financially able and your carpets are more than a few years old, you may want to consider replacing them. If you do this, don’t forget to vacuum the floorboards before new carpet is laid. Usually the carpet-layers won’t do that.

Have your duct-work professionally cleaned if possible and change the filter in your furnace. Buy enough filters to change them every month for the next year, and if you’re financially able, buy the really good ones.

Have your home cleaned top to bottom. Whether this is done professionally or by you, family, and friends, be very picky about how your home is cleaned.

Wash all draperies, throw rugs, throw blankets, pillows, sheets, and towels

Wash any stuffed animals

Vacuum or dust behind and under all furniture, including appliances. 4. Clean out your refrigerator and freezer.

If you have a door-front water dispenser, change the filter.

Discard or give away any house plants. Ask your team if you’re really attached. Some plants can just be moved to other rooms of the house.

Put away or discard your portable humidifiers. You probably won’t be able to use them in your home for at least 6 months.

Wash out all cabinets (inside and outside) in the kitchen and bathrooms. Clean all blinds

Scour all bathrooms.

Clean all light fixtures and fans.

Vacuum or dust all ceiling corners and vent covers.

Wash all windows and windowsills

Scrub floors and grout.

Clean your child’s toys with an alcohol/water solution. Add essential oil or lemon juice for a better smell!

Dust, sweep, mop, clean, vacuum and scrub everything in sight! Again, your home CANNOT be too clean

Have your chimney swept.

Don’t forget to insist that everyone who enters your home be healthy. Anyone with a sore throat, cough, sneeze, or sniffle should not be near your child until it is okayed by your stem cell team. This includes grandma, siblings, and even you!

Ask your transplant team about pets. Even the cleanest of pets carry germs, shed hair, and create bacteria in your home. Your team will be able to help you make the decision that is right for your family regarding your pets. At the very least, your pets should be regularly bathed and up to date on all immunizations.

If you haven’t yet established this rule, insist that anyone who enters your home remove their shoes at the door or in the garage. They should also immediately wash their hands with anti- bacterial soap. This includes service professionals, nurses, family members, friends. This should become the new normal for your home. Shoes and hands carry way too many germs.

Do not put hand towels in your bathrooms for about six months. Although it may seem wasteful to use paper towels, this is again an easy way to stop the spread of germs in your home for your child. Bath towels should be washed after every use for at least a few months. Same with bath mats and washcloths.

For at least six months, wash everything your child wears, even if it doesn’t “appear” dirty. Don’t “re-hang” anything your child has worn. Wash or clean favorite toys as often as possible.

Replace your child’s toothbrush every week or two for about six months.

Buy anti-viral tissues (Kleenex makes them)

Wipe down all kitchen and bathroom surfaces daily with anti-bacterial wipes for about three months.

Never leave a snack or cup (especially milk) sitting out for more than an hour. Again, what is normal bacteria for us can harm your child after transplant. Also, don’t save an uneaten portion from your child’s plate or cup. Be wasteful!

Finally, as cruel as it may sound, be careful about how you and others touch, kiss and hug your child for a while. Kisses on the mouth should be limited, and make sure that anyone who touches your child is healthy and has washed their hands. If your child touches someone or something that you’re not sure about, break out the anti-bacterial wipes. Again, it is difficult to think about limiting something as essential as human contact, but unnecessary contact with germs will definitely affect your child’s recovery.

Take a deep breath! This is a lot to digest! Yes, transplant is a challenging process, but it is also an important step in your child’s full recovery and remission. Although you may be feeling overwhelmed by the idea of your child’s transplant in the future, know that you can do it! Become fully informed about the necessary safety precautions, make a plan, and stick to it! Also, don’t try to go it alone – now is the time to rely on your Neuroblastoma community and your family and friends to support you during a trying time.

www.nbhope.org

Did you get all that? I am still trying to digest it all. I will be having a little pow wow session on Sunday with a few girlfriends to hash all of this out. I was born a fighter, I can handle this, it was what I was meant to do in life. I will take on the entire world to get Ronan better. Cancer has no idea who they are messing with. Nothing can come between Ro baby and his Mama Bear. We are an unstoppable team.
Cheers to you all tonight. May your weekend be filled with love, light, and laughter. I hope everyday is filled with adventure and smiles. LOVE TO YOU ALL!!!!!!!!!

P.S. Today was World Cancer Day. You know what I have to say to that????????????????? Earmuffs if you must.

A big FUCK YOU, CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It is also my oldest and dearest friend, Sandy’s birthday. Happy Birthday my sweet, hobag, of a friend. LMAO!!!!!!!

The faces all around me they don’t smile they just crack
Waiting for our ship to come but our ships not coming back
We do our time like pennies in a jar
What are we saving for [x2]

There’s a smell of stale fear that’s reeking from our skins.
The drinking never stops because the drinks absolve our sins
We sit and grow our roots into the floor
But what are we waiting for? [x2]

[chorus:]
So give me something to believe
Cause I am living just to breathe
And I need something more
To keep on breathing for
So give me something to believe

Something’s always coming you can hear it in the ground
It swells into the air
With the rising
Rising sound
And never comes but shakes the boards and rattles all the doors
What are we waiting for [x2]

[chorus]

I am hiding from some beast
But the beast was always here
Watching without eyes
Because the beast is just my fear
That I am just nothing
Now its just what I’ve become
What am I waiting for
Its already done

Oh