The Stages of Life without you

Ronan. Productive days are good for me. Days where I am busy, have lots of tasks at hand, and it forces me to feel like I have a bit of a purpose in this life without you. I went this a.m. to meet your Mimi so we could have a meeting with our Foundation CPA. I wanted to meet her and go over a few questions I had. It was a good, productive meeting. Afterwords, I headed out to North Scottsdale to see the Good Doctor. I like to check in with him every couple of months. I told him that I had stopped taking my Zoloft. He asked why and I told him that I was tired of being numb. He said that was a good reason and asked all the usual questions to make sure that I am actually doing alright without it. I told him that I wanted to deal with the pain of losing you, and to actually feel it; even as much as it hurts. We talked about a lot of different things. I told him about the sleep issues I’m still having in a major way and how I’ve taken my Ambien the past couple of nights. I don’t want to take that crap, but I also know that sometimes I need a break from all of this pain. Trying to sleep on my own, with only Melatonin, is just not working. I’m still going to continue to try, but I can only take so much. I hope one day I’ll be at peace with sleeping again. I really miss it.

After my visit with the Good Doctor, I came home and was full of way too much energy/anxiety. I threw on my clothes and drove to Camelback Mountain. I met my Frienemy, Inferno Fuckwad Bob there. I hiked up that mountain, as fast as I could today. It was only 102 out. Just as I was tackling the last part of it, I felt the need to stop and take a break. But then the voices in my head, screamed at me otherwise. They told me to keep going, to push myself harder, because you were waiting at the top for me. I could have been suffering from heat stroke, but I didn’t care. In my mind, I had to keep going, to get to you. I ignored the waves of nausea in my stomach, and continued to the top where I think I almost passed out. I sat and took a lot of deep breaths and drank my water. There were a couple of other people as crazy as me, who were there as well. They were there for pure pleasure though. Not because they know anything about Inferno Fuckwad Bob. I sat and listened to the happy conversations around me and almost got lost in the couples world; while they were snapping pictures of each other and were beaming with excitement about making it to the top. I wished to be that girl that I used to be today….. so giddy and proud of hiking Camelback. I remembered that girl today. The one who used to hike Camelback for pure pleasure, not because she feeds off of the pain. That girl seemed so young, so innocent, and so carefree. I missed that girl.  I wished for a rewind button, before you were sick. I wished so many things today at the top of that mountain. None of them came true.

Somebody asked me the other day, where I was in the stages of Grief. I am aware of the stages, but the question caught me off guard. Stages? I have to follow the stages? I didn’t know how to answer. It seemed so strange to me, as if there is a formula to follow after losing you. I am not like everyone else because everyone else did not have YOU, as there son. I guess I’ve never really taken the time to sit down and process the “Stages.”  I took a look at them the other day. They make sense, but I don’t necessarily think there is an order that I am following them in. I have felt these things, since you were diagnosed. I feel these things, 100 times a day. I don’t think the things below should be named the “Stages of Grief.” It should be written as a manual on, “Welcome to your new life, after losing your child.”

It should also have a side note that says, “Good luck with that. Doesn’t it fucking suck?” Here are the “Stages,” below. Just in case any of you are curious.

Denial

This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.

Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this?

Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – – your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.

Bargaining

Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.

Depression

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.

Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves.

Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

So, there you have it, Ro. The Stages of Grief. I do think it was beautifully written. I think it was written by Dr. J’s friend, Elisabeth Kubler-Ross. I’m reading her book now, “On Children and Death.” She was a good friend of Dr. J’s which tells me she is worthy of me reading her book. I’m not too far into it as I am having a hard time staying focused on it as it is one of the many pile of books next to my bed. I want to finish this one first, but I have some homework that I am trying to get done before I meet up with of few of our lovelies next month to go over your Foundation. Homework that requires research and not enough hours in the day.

Ro baby. I spent the rest of the day, playing the good mama role, really well. Except I didn’t cook dinner but one of our dolls dropped off dinner instead. Thanks, Katie. You saved me tonight<3<3<3

Time to try to sleep, Ro. I’m getting up early to run with Samya in the morning. Miss you so much. I love you and hope you are safe. Sweet dreams, Baby Doll.

xoxo

For you, I swear.

Ronan. It’s days like today, that scare the shit out of me…. because they do not. I don’t have ANYTHING I’m scared of anymore. I have things I worry about, of course. Obsessively. But fear does not register anymore. It’s weird to live so freely, yet so contained. My mind is going a million miles an hour today, with no end in sight. I feel like I’m on that carnival ride, the Tilt a Whirl, and I cannot get off. Life is just spinning, spinning, spinning…. everything is out of control, moving so quickly, and never slowing down or stopping when it should be. You died. The world should have ended too. It would have made sense to me, if it did. The pain I feel from losing you is so great, that I feel as if everyone else should be feeling it too. I know there are people, who are feeling a great deal of sadness from losing you. People you didn’t even know. People who you did know. Like your Godmama, Tricia Boo. Whom I sat with and had frozen yogurt with. I sat in the dark with her and listened to her tell me how she went out on Friday night because she is young, gorgeous, single, and that is exactly what she SHOULD be doing. She sat and cried to me and told me how guilty she felt about going on, about living life, because she never wants me to think for a second that she is not thinking of you, how unfair this all is, and how fucked up everything turned out. She sat there and tried to justify the happiness that she should be feeling, but she just is not because she is so jaded by this world. It hurt me to hear her say these things because all I want for her is to live her life, without having to worry that I think she is being disrespectful. I took some time to sit quietly with what she was saying to me and I finally just looked at her and told her I basically never wanted to hear those words, come out of her mouth again. That I never want her to worry that she could be offending me or hurting me, because she could not. And if she ever did, I would let her know. I told her how I know how much she loves you and she does not need to prove anything to me. Ever. I told her I am aware of the friends in our lives, who your death has affected so deeply. How by because of what we have gone through, their lives have changed, even in the smallest way. I notice it. I am aware of it. I am thankful for it. Not thankful for your death of course, but thankful for the way I am watching all of my little flowers bloom around me, because of the love they have for you. For us. I don’t need any of my little flowers worrying about being happy or having a great life. They were all meant to, Ro. They were meant to because you were part of their worlds and you affected them in such a way, that they will become more beautiful, because of you. What a gift you have given all of us.

So to all of my Tricia Boo’s, my Little M’s, my Susie’s, my Macy’s….. stop it. Stop apologizing for things that you do not need to apologize for. You all have proven yourselves more than I could have ever asked for. My Macy… I’ve been meaning to tell you to stop apologizing for not calling me on the 4 months of Ronan’s death. He loved you so much. That in itself means you are my sister forever. Nothing you do or forget to do, will ever change the way I feel for you. I expect you all to live your lives, just the way you are. As being the best versions of yourselves and being happy and thankful, because you know what it truly means to have been loved by Ronan. If there ever comes a time, that I am hurt or mad, and that day may come….. And it could be over somethings as silly as the time that I yelled at Tricia because I said she abandoned me, and then she and Macy ended up tracking me down on Camelback Mountain; because they were so upset over my words. What happened then? Tricia grabbed me, we cried, hugged, and apologized. But we were honest with each other and it only made us closer. You know what else happened? Macy flashed everyone she passed with the skirt she was wearing as she tried to hike up the mountain, in sandals. It made me laugh and love those two more than I ever thought possible. I know, Ro, who is true. So do you. That is the reason our lives are filled with the most beautiful people on the face of the planet. And I’m not exaggerating. If you are in our lives, there is a reason why…. so stop worrying, second guessing, thinking you have offended me or hurt my feelings. I promise you, I will let you know.

I fell asleep late last night. Once again, the thought of falling asleep without having you to kiss goodnight, is worse than any nightmare that I could ever have. I fell asleep but did the usual tossing and turning. I remember a bit of my dreams, but not much. I remember it had to do with the locket I have, that I put some of your ashes in. Somebody, and I cannot remember who, took my locket and threw it into a fire. I remember screaming hysterically and thinking that I was burning you all over again and you were going to be able to feel it. It was an awful dream, Ro. I’m so sorry. I woke up today, so tired from my restless night. I bounced out of bed anyway. I had a meeting to go to. A meeting that I’m not going to go into too much detail about because it is personal. And I don’t know if this person is o.k. with me blabbing about the things we discussed today. I know how to tip toe around things when I need to, as I don’t want to scare people off. I know I walk a fine line with the responsibility that comes along with this blog, but for as much as I am all about honesty….I do want to be respectful of others. Let’s just say, I met with a mom today. An amazing mom who knows what it is like to walk in my shoes. She took the time to meet with me, listen to me, hold my hand, to cry with me; but she also took the time to tell me this is livable. Her marriage survived. She still has her other kids, who have turned out to be amazing kids. She told me how she knows what the lowest of the lows are, but when the highs come along, they are unbelievable. She didn’t sugar coat a thing, which you know I love. I love to meet other people who are open and honest; it makes my heart happy. It’s funny throughout all of this, the people I am meeting. The people whom I feel like I’ve known my whole life, even though I have not. It was so easy to feel a connection with this mom today, because of the fucked up club we are in together. She is a firecracker, like me. She is a fighter, like me. She is ready to go to War. She is willing to do whatever it takes to help me get this message across. She is ready for the Sea of Gold, that is going to come. I know this is going to take some time, but it is coming. I will stop at nothing to make sure of this. And I love all of you, for being on board as well. Thank you.

After my meeting, I came home and went to meet Inferno Fuckwad Bob, at Camelback Mountain. Man, he was messing with my head today. I climbed that mountain, in the heat of the day, while dealing with him, screaming in my head. I have now convinced myself that everyone I know, is either sick, dying or leaving me. Ronan, you had to leave me…. so who is next? This is what Inferno Fuckwad Bob, is trying to convince me of. He’s doing a pretty good job because I spent a majority of the day, screaming and crying. I ran down Camelback at an insane speed. I fell hard, didn’t feel an ounce of pain, got back up and screamed to the world, “This is the best you can do!!! FUCK YOU!!!!!!!” I fell. Just like we all do sometimes do in life, all the time. I made a choice today. I could have cried out in pain and carefully continued down the mountain, watching my every step, tending to my bloody hands, bruised ass, and jacked up ankle; but I didn’t. I got back up, laughed, screamed, had someone ask me if I was alright, said “Yes, thank you,” and I ran my ass the rest of the way down to the bottom. Fuck you, Cancer. I hate you so much, that you make me stronger than I ever knew I was capable of being. I remember driving in the car, sobbing, and screaming out loud to you how sorry I was. I swore on my life, the life that I don’t want anymore, that I would not stop advocating for Childhood Cancer until people start to become aware and a major shift comes. I swore that to you today, out loud and I will not let you down, Ro. I don’t care if this does not happen until I am on my death bed, at 100 years old. It’s going to fucking happen. I have to take this anger I feel for losing you and turn it into something good. I HAVE TO, Ro. You were so gorgeous Ronan, that I know you will end up making this disease, which is so dark and ugly, into something beautiful. Something that people will no longer ignore. I know we will make this happen, together. Just you and me, Ro. Forever.

I love you little man. I’ve got to pick up your brothers soon from the airport. I miss you a million times a day. I love you more than you will ever know. I hope you are safe. I hope you were never scared. I’m sorry I couldn’t save you. I’m so, so sorry, Baby Doll.

xoxo

The sweetness of simplicity

Hello my friends. I’ve been hiding from you too… hence my writing to just Ronan; which I will continue to do as it feels good to me. But I still want to write to you as well. I wish I could tell you things are better; but they are not. I wish I could tell you that we are learning to come to terms with all of this; but we are not. I know this is still all fresh and new and I imagine it will be years before we will learn what happiness feels like again. I know that the absence from Ronan will always remain in our hearts, in our minds, and in our souls. That will never go away. I am doing the best I can do; today. That could all change tomorrow. I can tell you that I didn’t end up in a mental institution like I had suspected I would. I can tell you that I didn’t blow my head off with a gun, like I have dreamed of. I can tell you that both of those things won’t happen because that to me feels too selfish and that right there will prove that cancer has completely won and I won’t let that happen. I won’t do that to Ronan, to Liam, to Quinn, or to Woody. Or to any of you. I can tell you that I am still here and one of the hugest reasons is to keep Ronan’s memory alive. I have a big job ahead of me and although I am not ready to fully embrace it yet; the time will come when I can and I will. I would like to hide out for a little while longer. I am taking a break from the everyday things and embracing the love from my husband and twins. It’s been hard. I feel disconnected from everything and everyone. I am having to learn to feel the love from my twins again. Not that it ever went anywhere, but when I was taking care of Ronan I was with him 24 hours a day, for 8 months and fully submerged in his world. The bond that came out of that is something that I will never feel again. Our relationship formed into something so much deeper than anything I have ever known or will ever know again. Our relationship was filled with a love so deep, so painful, so raw, so heartwrenching, that it went to a whole different level. And I know that I love my twins just as much as Ronan and I would have fought just as hard for them, but the fact of the matter is I didn’t have to. I went through this with Ronan and in 8 months I gave him every ounce of love that I had. It was intense and exhausting and I wish this would have a different outcome. I wish I didn’t have to pour everything I had into him just to have him leave here. I was prepared to give him everything I had for the rest of my life. But instead I had to give him everything I had, for the rest of his little life. And his life was cut way too short, way too fast. All of this leaves me feeling empty, lost, and extremely sad. I know I have to go on, that I have a purpose in life, but it does not feel that way at this moment. After 8 months of fighting, I am now left with nothing. The fighting is gone, Ronan is gone, and the quietness and calmness that is seeping in is not welcomed. I don’t want it, I don’t want to embrace it. I just want Ronan. I know that he is not going to come back, at least in the way he was before his death. So, I am going to have to learn to live a life again without him. I am going to have to work to rebuild our family. I know this is not going to happen overnight. Everyday for us is going to be a struggle. But I also know that my actions and the way I handle all of this is going to have a huge impact on how we get through this. So, I am going to take a little break from Phoenix. I am going to throw myself into the world of Liam and Quinn. I am going to love them with everything I have and Ronan is going to help me do this. I know he misses them almost as much as he misses me.

I’ll never forget at Ronan’s service when one of Ronan’s doctors, Dr. Wood, came up to me and hugged me. He then looked at me and said, “Please give those 2 boys the best life possible. They deserve it.” I made him a promise I would. I’m not going to let him down or my twins down. I will continue to be the best mom I can to them. I made a huge promise to Dr. Maze too. He is asking a lot and at one point I told him I could not promise the things he was asking of me. But today, I feel differently about it. I feel like I can maybe come through with what he is asking of me. After all he has done for Ronan, I am having a hard time ignoring what he wants. I am going to take these next few weeks and work really hard on some things for him. I told him that when I come back, I will try to be stronger because the way I left him, was awful. Awful in the way that I could not even drive myself home because I had to sit in my car and bawl for an hour as I did not want to go on. I somehow managed to drive myself home through all of my tears and anger. I somehow managed to let Ronan’s little voice guide me and listened to him tell me how I cannot give up so easily. I know he does not want to see me yet; he needs me to help save our family and to help raises awareness for the sickening disease that stole his life. Even though he is gone; he still needs me just as much as before. Even though he is still gone, when some stranger asks me how many children I have; I will always say 3. We will never go back to being a family of 4 again. We talk about Ronan everyday as if he is still here. That will never change.

Yesterday, I spent the day with Liam, Quinn, and Woody. Despite Ronan being gone; there was a lot of laughing from the twins. They are as happy as can be and I know a big part of that is all the time they have been having with Woody and I. Their happiness is so simple. It is because we are together, as a family, enjoying the laziness of summer. As painful as it is for me, I can tell it is a little healing as well. I’ve missed my buddies. They are such amazing little boys who have been robbed of so much. It’s time to slowly make things up to them. One day at a time. I am so thankful for them because I know without them, I would not be here. That I can guarantee. But they are here and they are the most beautiful little boys who love me so much. Who love Ronan so much.

Alright my friends whom I’ve missed so much. Time to go and enjoy my little men today. Blessings and love to you all.

xoxo

We miss you, Ronan.

Thank you Lulu Lemon girl

Ronan. Everyday without you is stranger and stranger. I am trying to keep super busy, but I am really just existing. Somebody asked me how I was today. I said I was existing so that was better than nothing. I’ve stopped saying I’m fine because I’m not. And I know you know I’m not and you are o.k. with that. Maybe someday I will be o.k.; but as of now , everything is a freaking nightmare. I keep thinking I forgot you at the grocery store or something. I remember feeling this way when you were alive, and if I had dropped you off at school for a few hours. I would go about running my errands and panic because I thought I had left you somewhere when you were really just at preschool. That is how little I was used to be without you. I would give anything to have just left you somewhere now; as awful as that would have been. In the grand scheme of things it would be a whole lot better than this.

Today, I took Liam and Quinn to school. Late. They have been tired lately. Staying up a little too late with us. As of now, Quinn is in my bed with me and is just now falling asleep. He is stuck to me like glue. I don’t blame him…. the poor little guy didn’t want to go to school today. I had a talk with him and told him I would talk to his teacher and if he wanted he could come home later. I think the distraction of school is good for your brothers minds right now. I know I am going to have to get them some counseling. I am meeting with someone Thursday morning to see if she will be the right fit for our family. I cannot tackle this alone. I need some help with my two little guys. As strong as we are as a family, this is all too much for your daddy and I to fully handle. An outside source will be something we will embrace for as long as we need to with your brothers. They need someone else to talk to besides us and someone who has experience in helping out with things like this.

After I dropped of your brother I ran some more “let’s keep you totally busy,” errands. I ran over to The Biltmore to return some running shorts that your daddy had gotten me for mother’s day as they were too big. As soon as I walked in, I was greeted by a bubbly blond girl. She didn’t give me the standard greeting but instead goes, “Heeeeey girl!” I just smiled and said hello. I went about my business and got the things I needed. She met me at the cash register. She asked me what I was out doing and I just quietly told her I was running errands. She then goes, “Oh, getting shit done?” OMG. Who is this girl and how can I be her friend? She totally cracked me up today when nothing is making me laugh. I thought to myself, is this really happening? Did the LuLu Lemon girl really just tell me I was getting shit done?? She did and made my day. As she handed me my receipt, I grabbed one of you F U Cancer bracelets out of my purse and gave it to her. I told her to look you up. She was totally worthy of one of your bracelets. If only more people in the world could be so candid and real. I LOVE REAL PEOPLE. So thanks, LuLu Lemon girl. You made a very sad girl, giggle on the inside the entire day today. It felt nice.

I did a really good job of keeping myself busy. I was only home alone for about 30 minutes and it wasn’t bad. My friend, Melissa dropped by and I had her drive me up to Echo Canyon so I could get in a hike. What is this weather, Ronan Baby? I know you are responsible for it because never in all the time that I have lived here, have I experienced a May quite like this. It has been so gorgeous and almost cool. I hiked as fast and hard as I could today. When I got to the last part, I was starting to get tired. The wind literally picked up and I felt like it was pushing me up the rest of the way. I know it was you. I sat at the top for a long time and enjoyed the sun. It was almost the perfect day except you aren’t here. I guess I’d better get used to those almost perfect days as I know I will have them for the rest of my life. I ran back down the hill to our house. I looked for you in our front window and so expected you to be waiting for me right at the front door like you always used to do when I would hike. You were always so anxious for me to get back to you. It was like a slap in the face today when I returned and you were not here. I slap in the face that I will never get used to and I will never accept. Because all of this is fucking unacceptable.

Tonight, we went out to Tarbell’s for Uncle Jay’s birthday dinner. We went with Jay, Charlene, Lindsey and Mark. It felt weird to be out, but all of those people are family so it was comfortable. It was important to us to celebrate your Uncle Jay as he has been such a good friend to us for so many years. It was a quiet dinner and the food was as usual, nothing but amazing. I ate a bit for you and even had some of the amazing deserts that Mark sent out for us. It was a nice night but we kind of had to hurry home due to Quinny waiting for us. We were on the clock and he called me twice to see where we were. My heartstrings tugged for him, so we ate our dinner, went back to Uncle Jay’s for about 15 minutes and sat outside. We then went home and now here we are. All snug as bugs in a rug. Tired. But restless. I am so very restless all day everyday. I’ve got to find something productive to do with all of this energy. I know you will help me figure it out. Mr. Sparkly Eyes told me he thinks I need to just take a couple of months to regroup and not do anything. I told him, I knew he was going to say that, but I don’t know if that is something I can do. I have done nothing for the past 8 months, 24 hours a day, 7 days a week, but fight for you. And now what? All is expected to be peaceful and calm? When I have  gotten so used to is going, going, going, fighting, fighting, fighting. I know he is probably right, but I don’t know if I am capable of this calmness that he wants me to embrace. I explained to him that I feel like a brand new mom, with my first born baby. Stumbling, lost, scared, worried, with a ton of adrenaline. Except now I am a brand new mom, to a dead child. How the fuck do you figure out what to do with that? Not a clue. I’m just doing the best I can which is not hiding in bed all day and taking care of my twins. As of now, that is all I can handle.

That is all for tonight my sweet baby boy and lovely peeps. Ambien induced sleep coming my way as that is the ONLY way I sleep now. Love you all to the moon and back.

xoxo

This is the tattoo I got in New York. I had “This too shall pass,” with one baby star. The other night, I had 2 more baby stars added for Liam and Quinn. So now I have all my boys with me all the time. 🙂 The stars are in purple. Club tattoo did a great job:)

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

“Just you and me, Mom.”

I am trying my hardest to pretend this weekend is normal when all I really want to do is run away. Ro woke up bright and early as well as the twins as they had their baseball game to get ready for. Woody headed out early with them and Ronan and I waited for Tricia and Macy to pick us up to head over to the game. Macy’s eyes were full of tears as soon as she saw us and I tried my best to look away. It hurt so bad. Tricia drove my car, Macy sat in front and I sat in the back with Ro. We headed out to watch the twins play in their baseball game. It was hard for me to be there today, as I know everyone knows whats going on and I could feel the sadness in the air. I held on to Macy and Tricia’s hands, kissed my husband and cheered on my twins. I put on my sweetest smile, tucked Ronan away in his stroller and said hello to a few lovely team moms. We got to watch my boys play their game for about 20 minutes as that is all Ronan could handle. He is in pain and just wanted to go home. I left there with Tricia, Macy and Ronan in tow and talked Ronan into getting a shaved ice from our favorite place. He even went inside to pick out his flavors for him and his brothers. Macy had her first shaved ice today too. So proud I was the one to break her in. After our shaved ice, we headed to Have Java for coffees and Ronan then decided he wanted to go to Target. At this point, his wish is our command. We stopped by our house to drop off Liam and Quinn’s treats and Quinn hopped in the car with us to go to Target. It was the first time I have seen Ronan smile since we’ve been home. We went to town on getting him some new Star Wars guys and a Nerf Gun. After Target, we came back home and my mom had just arrived. Ronan was overwhelmed by the few people in our house as it was a little chaotic for him. Tricia and Macy said they were leaving and I begged them not to. I feel so strong with the two of them around. Tricia was only trying to be helpful and said I needed time with my family but I pleaded with her that she and Macy are our family. As soon as they left, I started bawling. I told them I just needed them at my house even if that meant they were picking weeds in my backyard. They both decided to respect the space that they think we need. I get it, I understand, but I am not my rational self these days. I sent Tricia a text telling her I was mad at her and as she had abandoned me. I know this is not the case at all, but not getting my way when I think I know best, is something I have a hard time with. I know that Tricia was right in leaving today. Nobody knows their place and it is a hard thing to watch. All I want is my house full of the people who I love most. Full of laugher, fun, and friends. But this is not what Ronan wants and I have to respect that.

After the Tricia fiasco, I went into straight psychotic mode and knew I was going to end up huddled in a corner somewhere bawling my eyes out. I didn’t want to freak out Liam and Quinn, so I decided I needed to take my anger out elsewhere. I ran my ass up Camelback Mountain as fast as I could and cried almost the entire way. I think Marisa called in the middle of my hike and I remember babbling to her about everyone abandoning me. She tried to calm me down, but there was no calming me today. I kicked that mountains ass and it felt good. I got to the top, prayed once again, and zoomed down as fast as I could. Tricia called me as I was halfway down the mountain begging to come and find me. I told her no, that I would be down soon. She in Macy trecked up as far as they could in their flip flops. As soon as Trish saw me she grabbed me and held me tight and we both cried. She told me how sorry she was, and how she would never leave me. I was the one who was sorry as I was a big, fat, jerk. Nothing in my mind makes sense anymore and the littlest things upset me. I know my best friend would never leave my side. I was being overly dramatic. I about peed my pants laughing when I saw what Macy was wearing while trying to climb up the mountain. Only a true friend would hike up Camelback in a red skirt and sandals, flashing everyone in sight due to the wind. As she said, “Thank god I wore underwear today.” I’m still laughing about that one.

I had them leave me at the bottom, so I could run home. It was there that I was greeted by my mom and Quinn who was riding his bike looking for me. So sweet. I was so happy to see him. He was so proud to come and find me. I am such a lucky mama; my boys love me so much.

I’m sick to death about Ronan. I feel like his body is giving out, but the worst part is his spirit and soul seem to be going as well. He is tired, grumpy, and just lays around. This is so hard for us to watch. It was only a few weeks ago that he was running around as if nothing was wrong. This is all happening way too fast. He just wants to be held and loved so that is what we are doing. I am still praying for a miracle and won’t ever stop. I keep picturing in my mind, him just getting better by himself because of all of our love. I’m hoping that months will go by and he will slowly come back to us. I dream of taking him in again for scans and hearing the words, “It’s amazing, his cancer has stopped spreading and is going away.” I dream of this a dozen times a day.

We have not had the talk with the twins yet, although I know they know something is going on. I’m trying to think of the perfect way to do it. There is no perfect way or perfect timing but as of now, I’m imagining Woody and I taking them on a walk to just let them know as little as possible. No talk about death, but explaining to them that the medicine is not working so we just need to love Ronan as much as we can. We will answer their questions as best we can, but have to try to make this as positive as possible. They do not need to know everything at this point. He is still here with us, he is still fighting but my baby is getting tired. I can see it in his eyes.

I’m scared to sleep now. What if I miss something. What if he takes his last breath and I miss it? I will never forgive myself. I’ve stopped taking my Ambien…. I’m obsessed with listening to his every heartbeat and watching him all night long. I sit and think about where he is going to go next…. somewhere with no more pain, but how can he not be in pain because I know his heart is going to be broken because he won’t be with us. This is going to be worse than any pain that he has been through at this point. He was meant to be with us forever. Not such a short amount of time as we had so many plans.

I’m restless and scared at what is going to come out of my mouth if I keep rambling on tonight. I love all of my family and friends so much. I love my Mr. Sparkly Eyes whom is always there to pick me up, especially when I’m at my lowest point. He is the only one who makes me smile now and who gives me such amazing advice. I love him for that. I love my husband for trying to be so brave, but he is so sad and I don’t know what to do except for try to be strong for him when he needs to break down. I sat on his lap tonight outside for a long time and tried to be the voice of reason and tried to reassure him that none of this is his fault like he is insisting that it is. He keeps saying it’s because of his bad genes. I told him that was bullshit and had nothing to do with this. It was just bad luck. Look at our beautiful perfect twins we have. My heart breaks for my husband and all I can do is love him, talk to him, and try to be strong for him as I did today, anytime he was around. I love him so much, that beautiful man of mine.

I’m ending tonight on that note. I love you all so much. Sweetest dreams to you all. I will never stop thanking you for your love and support.

xoxo

You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

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.

http://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

The little monkey made it through the night

We ended up staying out of the hospital last night. Ronan slept and slept hard. His fever was off and on through the night, but did not ever go above 100.1. So thankful.  I had the most awful dreams last night. UGH. I can’t shake them this morning. I had a dream that Ronan could no longer have his Stem Cell Transplant because he had too much Neuroblastoma everywhere. All of our doctors were in my dream and there was a lot of screaming, crying, and hitting done by me. Can’t I catch a freaking break?? Why can’t my sleep be at least be peaceful; my days are filled with so much crap you’d think I’d at least be able to take a break while I sleep. Not the case, ever. I need a break today. I may have to just bite the bullet and leave Ronan for a bit to go and hike Camelback or something. I need to clear my head for just awhile.

The boys’ are excited to watch the Packers football game today (Go Packers!) and they also have a birthday party to go to as well. Woody and Quinn are still asleep and I am cuddled on the couch with Ro and Liam watching Mickey Mouse. Ronan does not want to do anything; except have me be by his side. The little guy gets upset if I even leave his side to get up and try to do some things around the house. Macy and I have been laughing about this on the phone and calling him my warden. He certainly is the one who rules the household around here. I don’t mind, I secretly like being his slave. Especially when he looks at me and tells me I’m the best mommy in the world. It’s moments like that, that make me realize I can get him through this because he is so worth all of this.

On Friday night I got a call from my OBGYN,(the BEST one in the world, Dr. Kathleen Schwartz) We have been trying to connect forever but I keep missing her when I am in for my visits. She is the one who delivered my twins and Ronan. It was so nice to hear her voice and to talk to her for awhile. The first thing I said to her was, “Can you believe this is happening to us?” She was very sweet and very concerned and it was nice to catch her up to speed on things.

All of my little monkeys are up now so I’ve got to get breakfast made. Have a great morning… I basically just wanted to update you on Ro’s fever. Hoping we continue to keep him home. Thank you Stacy Frakes for saving my life with your Hava Java delivery this morning! You are the BEST!!!!!

If I could open my arms
And span the length of the isle of Manhattan
I’d bring it to where you are
Making a lake of the East River and Hudson

And if I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings

I wish we could open our eyes
To see in all directions at the same time
Oh, what a beautiful view
If you were never aware of what was around you

And it is true what you say
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to . . . .