Sometimes even I need a reality check

Ronan. I woke up yesterday morning with a Halloween grief hangover. I felt like I had been hit by a bus. I was determined to not stay in bed all day, like every aching bone in my body was begging me to do. I had to talk myself out of doing this and it took a lot but I wasn’t about to give into my grief and let it chain me to my bed all day long. I got ready for the day instead and headed over to my office. Thank god for that place. It is helping me so much. I pounded out a few things that I needed to get done. I had an interview at 1:00 that I so did not feel up for, but the person interviewing me was coming to my office so I told myself just to stick it out and I would go home and crawl into bed, after it was over. Little did I know, that this 22-year-old kid was about to make my day.

I never know what to expect when doing these interviews. They can be emotionally draining most of the time and quite honestly, I don’t love doing them. I would rather just hide behind my computer all day wearing my spirit hood, glasses and pajamas. But I also know that I am very lucky to have the opportunity to get your story out there in a way that will raise awareness for childhood cancer. I know this comes with the territory and is a part of me being an advocate for you and all of these other kids who have been dealt this shitty hand in life. They don’t have a voice. I do. I will use it and scream for you and them as loudly as I can. I will use this platform to do great things and hopefully help change this devastating world. As soon as Tyler walked into the room, I knew I was going to love him. He was so nervous and I could totally tell. He sat down and told me a little about himself and why this story struck such a nerve with him. He had me at hello and the fact that he was wearing a skull shirt, made my day. “Tyler! You have on a skull shirt, I have on a skull necklace! You could be my 22-year-old soul mate!” I tried to put him at ease as much as I could. He had his notebook full of questions and it was so refreshing to see that he had really done his research on my blog and all things you. That made me like him right away and automatically made me respect him right from the get go. It was so refreshing to see he was serious about us, our story, and helping to get our message out there. Our interview went on for about 2 hours. We had a good little thing going back and forth. I was so impressed by him at one point I thought, “I hope Liam and Quinn turn out to be like this kid. His parents must be so proud of who he is and all he stands for.” I told him being interviewed by him was one of the greatest interviews I’ve done yet and I truly meant it. I know he is going to do a great job on our story and I can’t wait to see what he does with it. He left me by saying, “Please don’t go home and throw up because this was so hard.” I told him that in no way did I feel sick and the interview was actually really great. I gave him a big hug and told him thank you. I felt like I had just spent the afternoon with my little brother. It was a great afternoon for once and I left feeling totally inspired by the youth of today. Mark my words, that young soul will help change this world in one way or another.

I left shortly after Tyler left. I ran home to do some things. There was a support group going on at the MISS foundation and Dr. JoRo was leading it. As much as I hate support groups, because to me they are so painfully hard, I dragged my butt down there to attend. I’ve only been to one before and it was so awful that I refused to go back. I sucked it up last night for a couple of different reasons and I have desperately been missing Dr. Jo, so I knew that seeing her would be great. My favorite mom’s were there. The mom’s of a baby boy named Noah. I was so happy to see them and was able to spend some time with them. I adore everything about those two except for the fact that they have a dead child, just like me. I got settled into group and we all went around and told a little bit about ourselves and our kids. I felt vulnerable, sad, and scared sitting in that group. I know everyone in the room is there for the same reason so it should feel safe to me, but to me it just feels like the saddest place on earth. Every single person in that room, has a dead child. It is always a wake up call to me, as if I need anymore wake up calls in life. But it honesty is like a slap in the face. I sat and listened to the horrific stories of everyone else. The drowning, the car accidents, the ecstasy story, the stillbirths, the mental illness, the sudden death at school, etc….. Newsflash! Cancer is not the only way kids die. I know this. It made me want to run home and lock Liam and Quinn up forever and beg them to never touch a drug in their life, not drive a car, or leave the house. You think you are immune to your kids dying? You think you are too perfect of a family, for this to happen to? You are not. Nobody is. I think the sooner we as a world start to realize this, maybe we will take less things for granted. Maybe we will enjoy every single split second with our kids because nobody can say when our time is up. Maybe parents will start understanding that being a parent is a privilege, not a right. No matter how much money you have or how protected you think you are. Sitting in that room last night is the most humbling place in the world. Even I myself, need a reality check once in a while to be reminded that I am not the only one hurting this badly. That is why the MISS Foundation is such an important place in the world. Without it I can guarantee you about half of the parents in that room tonight, would have ended their lives. I know I would have. Dr. Jo is part of the reason that I am still here. If you don’t know about the MISS Foundation, please check it out. They have such little funding and need it so badly. It is such a safe haven for all of us parents going through the worst thing possible and Dr. Jo is my absolute idol in life. She is one of the rarest most beautiful souls that I have ever known. http://www.missfoundation.org/

After group ended, Dr. Jo came up to check on me. She knew I was a wreck. She looked at me and said, “How was that for you?” I said, “So Poppy is going to be born dead, right?” I was so shaken up by the still birthing stories. She just looked at me with that wise motherly look in her eyes. “I knew you were going to say that. I know that was hard for you to listen to. Poppy is going to be fine. She has Ronan looking out for her.” I keep telling myself I have to trust in that. I know that Ro. I tell myself that about 100 times a day. I left group beat and exhausted. I came home and crashed out until early morning. I woke up, showered and went to wake up your brothers. Liam was burning up. I put him in a luke warm shower and told Quinn to get ready for school. I had a lot to do today, but canceled it so I could stay home and take care of Liam. He was so sweet and so thankful for everything. I ended up taking him to the doctor to rule out strep because that has been going around. His strep test came back negative and his fever is almost gone. He does look miserable though, so he spent the day resting while I spent the day being domestic around the house. I hate being at home doing all the same things I used to do. Today, I forced myself to cook all day long so Quinn would have a nice meal to come home to after school. Cooking used to be our thing and now it’s just so hard for me to cook without you. Doing anything around the house is hard for me now. I don’t have your clothes to wash, your breakfast to cook, your dishes to do. Not having all of those things to do for you makes doing them sting so badly. Today, I took the day, set myself aside and did things that I knew your brothers would be thankful for. I was right. Quinn must have told me about 10 times tonight, “Thanks for the homemade soup, Mom. It was really good.” This broke my heart in a million pieces. It made me realize that I need to work a little harder around here doing the things I used to do, every single night, such as cooking really great homemade meals. I think the every night thing might be pushing it, but a few nights a week, can be a start. You know why cooking is the most hard for me? It’s because dinner time, with a homemade cooked meal means we have to sit around the dinner table without you. I don’t think that will ever become an easy thing. I often find myself getting anxious and sick to my stomach. Quinn sits in your chair now. I’m just glad someone is sitting there, I guess. He is a good little seat filler.

Your brothers have their last basketball game of the league tomorrow. I hope Liam is feeling well enough to play in it. I’ve made him rest all day and I fed him a good dinner tonight. Hopefully, I can get him to go to bed early to get the rest that he needs. I’m tired too. An early bedtime sounds like a good idea for both of us. G’nite Ro baby. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

Bye Bye Little Sad House! We Have a New Home!

Ronan. Guess what? I had a good day. Another one of those crazy, good days where something so big happens, that I have seriously been jumping up and down all day long. Thanks to all of the amazing people you are just throwing my way, thanks to this blog, and thanks to the most kind hearted, generous people in the world, I now have a new home. As in The Ronan Thompson Foundation has an office! You know how important it is to me, not to spend the money that people are donating on administration stuff. This is why, I have been doing everything from our house. Our sad little house where I often work from our dining room table, our kitchen table, and even my bed. Our sad little house that leaves makes my skin crawl during the day because I miss you so much. I did not want to use our money, to rent an office space so I did the best with what we had, which was our house or one of the 5 Starbucks that I troll on a regular basis.That Starbucks music was about to make me slit my wrists. But now we have an office! And the people that work in this building, could not be lovelier! They are giving me access to all of their conference rooms, space, and my very own office with a door and all. They even have a COKE machine! Holla! (but don’t tell Poppy. We are almost totally off caffeine) It is the most beautiful building and it even has a basketball court which your brothers are so excited for! They just handed me over a key, and voila! Welcome to our new home! I took Becca and Stacy there today. They both cannot believe this. Carolyn called me and left me a message that said something like, “This is the yellow brick road and you are Dorothy!” That make me smile so big. It just tells me, once again, what we are doing, is so right. If it was not, things like this would not just continue to happen over and over again. Thank you, Amy for hooking this up. Thank you, V and K. For being so kind and generous today. I can not wait to have an actual place to go to where I will be a thousand times more productive. And maybe a little less sad. Watch out childhood cancer! I’m really going to kick your ass now! I promise to be the best little tenant ever.

I have been reading all of your comments today. I had forgotten about that story that happened while Woody and I were in a Nordstrom Rack in San Diego. The one where I was watching that little girl play in all the clothes racks. I was mesmerized by her. I had just lost you. I heard her mom call out her name. “Ireland!” I almost fell over. I went up to the mom. “What is your daughters’ name?” She just looked at me and said, “Ireland.” I smiled and said, “It’s beautiful.” That has been our girl name, for about 10 years. I wonder if that was a sign of what’s to come. I have a few more weeks before I will find out. Ireland Ronan. I think you would have loved that name. We shall see, right Ro baby. If this baby is a girl, I will fall over. I never thought I would have a girl, but have always felt like I was meant to have one. I will be just as happy if this is a boy, too. But oh, how much fun would a little baby girl be. My due date is April. I have a ways to go. I think I am starting to feel a little better and pie is still my best friend. Meat is still my enemy. So much so that I am wondering if I’ll become a vegetarian after this. The thought of this made me laugh due to Dr. Jo. She is a hard core vegetarian and has been so for over 20 years. I often give her crap about this. She would fall over if I became a vegetarian. I used to love my meat, but now I think I know how she feels. I don’t my hatred with meat will last, but as of now the thought of it makes me ill. Pie. I’ll just stick with pie for now.

Your brothers have a basketball game tomorrow. They are at practice now. We are going to go to dinner when they get home. We don’t have many plans for the weekend. Most of our weekends are low key. A lot of time at home, which is still hard for me. Our house still to me feels so empty and sad, without you here. I don’t understand how even watching your daddy and brothers, watch football is normal now. As in, this is exactly what they would be doing if you were here but you are not here, so how are we doing the exact same things? The exact same things feel so wrong and are so hard for me. I wonder if this will ever get easier. I often feel like after you died, we should have just up and moved to freaking Australia or somewhere crazy. So we would be doing all different things. I know that running away would not have solved my sadness, but living in the same house, without you is hard for me. It’s comforting to your daddy and brothers so this is why I stay here. I sacrifice myself, for them. Having my own office, is going to help so much. Having my own space without your little empty bedroom 10 feet away from where I am working is going to save me. Once again, I am so grateful and humbled by the kindness of strangers.

It’s late now. We went to dinner. I ended up throwing up in the bathroom. Quinn was eating a piece of steak beside me. I couldn’t take it. I tried my best. We are home now. I’m begging your daddy to go and get me a pie from the store. Because he is the best daddy ever, he will. I’m tired. It’s been a long and busy day. I missed you tonight, when we were riding in our old jeep to the restaurant. Oh, how you loved that thing. Kind of broke my heart, to be in it, without you. Ronan, do you want to know the one question I get asked, all the time? It’s so funny. It’s the “Who is Mr. Sparkly Eyes.” A lot of you, ask that in my comments. How do I even put into words, who he is? I could describe him in a thousand different ways. But the most important thing is he is someone who loved you so much, Ronan. He is someone you loved so much. You two had a bond and almost a secret language. I know he is connected to your soul and you are to his. He is doing such a good job, of watching over me for you. He is quite simply probably one of the few reasons that I am still alive. He has saved my life and for that, I have you to thank. Thank you for him. I thank you for him, every single day. Some things I like to keep private, like people’s real names. Same with our Fairy RoMo. I have to have some things I keep to myself. Those two, will always go by their nicknames.

I love you, my little seal. Ah, for those of you who have also been asking… the logo for Ronan’s Foundation is a little seal, because that is what his name means Irish and Gaelic. I love that so much. A little seal with the biggest eyes. So sweet. Goodnight baby doll. I miss you. I love you. I hope you are safe.

xoxo

Did I die? Nope, it was just the flu.

Ro baby. It was bound to happen sooner or later. The way I run myself ragged, I’m surprised it took this long. It started Wednesday night. I was getting ready for our little board meeting and I should have suspected something….. but I just chopped it up to being tired. I went to our meeting, did my best to formulate my thoughts with this heavy fog that was hanging over my head (tiredness or so I thought), came home 4 hours later (meeting very productive) crawled into bed and by that time, every inch of my body was aching. I threw off my clothes, washed my face, and curled up in your bed. I don’t think I moved for the next 24 hours. I slept for about 16 hours straight. When I did finally wake up, I felt like I had been hit by a truck; several times. I spent the next couple of days, wishing for death just due to how physically awful I felt and for the first time, it was due to something else then the loss of you. It was official. I had the flu. And there was nothing I could do about it. I gave into it. I let my body break down like it has been wanting to do. After about the second day of being extremely sick, I started to come about and realized my surroundings again. Grief, reality, Inferno Fuckwad Bob, were all there waiting for me. I woke up to a quiet house. Alone. A heavy wave of sadness washed over me. I’m alone. I’m sad. Why is the house so quiet? Where’s Ronan? Ronan’s gone. Ronan’s dead. You are alone. Nobody wants to take care of you because you’ve been so mean. Because you’ve pushed everyone away. I started to cry. My phone rang. Of course it did. You always make sure of this. I pick up and say hello to our favorite lovie and I give him my best I’m not crying or sick voice I can. It doesn’t work.

Mr. Sparkly Eyes: “Why do you sound like that? What’s wrong? Why are you not at your F U Cancer Starbucks office today?”

me: “I’m sick. I think I’m dying. I’m sick. I’m alone and I have nobody to take care of me.”

Mr. Sparkly Eyes: “Well, how are you going to Fuck Cancer if you are sick?” the chuckling begins. “I’ll bet you are the WORST sick patient ever. You being sick, unable to do things, just does not go hand in hand.” the chucking continues.

me: UGH. I’m too sick to laugh. But I laugh anyway. “Why are you laughing. It’s not funny. I’m really sick and alone and nobody wants to take care of me.”

Mr. Sparkly Eyes: “You are not alone. You have plenty of people who would love to take care of you. I know how stubborn you are and I know how you won’t let ANYONE take care of you.”

me: “I hate that you know me so well. Not really. I love that. Thank you.”

Mr. Sparkly Eyes: “I miss him. I’ll check in with you later. Please rest. This does not suit you at all.”

me: “Fine. Agreed. How are you always right? It’s starting to annoy me. I love you, Sparkly.”

I hung up and listened to your Sparkly and went back to sleep for the next 8 hours. I let the tears, sweat, and vomit take over my world for 3 days straight. I almost made your daddy take me to the ER as I thought I was massively dehydrated. The thought of the ER and the reality that would come with it, kept me at home, chugging Gatorade. Finally, late last night, I started to feel better. I poked my head up out of bed to get a peek at your daddy who was stripping sheets, washing blankets, and tending to your brothers. Thank RO for that daddy of yours. I tried to get to sleep at a decent hour last night but my achy body and the thoughts of you, were consuming me. I found myself, on my phone, looking at pictures of you. Starting from before you diagnoses to the months after. Oh, there’s perfect infant Ronan. Then perfect baby Ronan. Then perfect toddler Ronan. Then perfect little boy Ronan. Then perfect your baby has cancer Ronan. Then perfect your baby has cancer Ronan, but we will fix him. Then perfect your baby has cancer, Ronan but we can’t fix him……. Then the pictures just stop because no more can be taken. So I shoved the phone away and rocked myself as I sob and cry and cry. What do you mean, no more pictures of Baby Ro? He was mine, how can that be? What do you mean, I can’t talk to him anymore? He was my best friend, the love of my life….. this can’t be real. It cannot be real because it is too awful. Things like this don’t happen in real life, right? Things like this don’t even happen in the fucking movies so how can they possibly happen, in real life? Fuck this FUCK THIS FUCK THIS!!!!!!!!!!!! I just want my best friend back. Please!!!!!!! Somebody make this not real because it is too horrific. I’m up out of my sickness coma. I’m better. I’m pacing the house now. I’m looking for you. The screaming won’t stop now. I grab my Ambien that I now only take due to emergencies. It was an emergency last night. I was like a wild animal out of control. I needed the blackness of the night that only exists due to this little frienemy of mine. Swallow pill. Sheets drenched. Pillow case soaked. Clutch phone to look at your face. Your sweet little face. Blackness engulfs my forever painfully aching body of grief. Lights out for the next 7 hours.

I wake up to the fucking sunlight obnoxiously screaming in my face. Dude. Can’t a vampire/zombie catch a break around here? Would it be too much to ask for the happiness of the world to just go on vacation for a day? Not today. Today you will be slapped in the face with the reminder that everything is AWESOME in AZ because it is a perfectly sunny happy fucking day. Even when you have a dead kid, life just goes on. Or so the outside world seems to think. Even the weather agrees.

That’s all for now little man. I miss you so much. SO much that I somedays think this still cannot possibly be real. But then I see your Urn staring back at me and I am quickly reminded that it is and there is nothing I can do about it, to bring you back. For that, I’m sorry. I am so very sorry. I love you. I miss you. I hope you are safe. Please keep watching over Ben with the Bald Head for me. Thanks for making it rain on him the other night while he was out for a walk with his mama. I love you, Ro. Sweet dreams.

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

On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CTMIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me

Yoga, Hiking, and Tears

What a busy, yet peaceful day. I started off my day joining my friend, Stacy, for a hot yoga class. An hour and 15 minute class where I was drenched in sweat and tears almost the entire time. I have not done a yoga class in years, but it has been something I have dying to get back into. It was almost too much… intensity wise. I felt broken, vulnerable, sad, yet strong and calm too. Stacy looked over at me at one point while we were standing up doing our poses and saw the tears pouring out of my eyes. She came over and held me for a minute and then asked if I needed water. She then goes, “What about Coconut Water? I have some!?” She made me laugh out loud at that one. Ah yes, Coconut Water makes everything all better. We had some after Yoga and it was the best Coconut Water that I’ve ever had in my life;) Thank you Stacy for the yoga today… I really hope to get a bunch of these classes in before we start isolation. It is a good way for me to let everything go and release all of the things I am feeling.

After yoga, I came home showered and got ready to head over to The Village for Liam and Quinn’s basketball game. I took Ronan with me. He was in heaven and spend a lot of the time helping Woody coach. He even had his own whistle hanging around his neck. It was adorable and he loved being out with his brothers. Liam and Quinn did great as always. They are such good little basketball players. Watching them play basketball is one of my favorite things to do in life. I am so thankful I was able to go today; it meant a lot to all of us.

After basketball we came home and I took a long nap. I think the hot yoga and all the crying I did this morning did me in and I had a bad headache the entire day. I felt better after I woke up and around 5 I headed out to church, a.k.a. hiking. I needed an active day today. It has been way too long since I’ve been in touch with nature and hiking is something that I have been missing so much. I ran up the mountain, watched the sunset, and prayed my ass off. It was one of the most gorgeous evenings tonight and hiking always clears my head. Today was absolutely perfect in every way.

The boys’ have their cousin, Luke, staying the night tonight. He is a fifth grader at their school and all three of my guys idolize him. Woody took them to play basketball at The Village and then to pizza tonight. If my boys’ turn out to be anything like Luke, I will feel like the most blessed mama in the world. He is a parents dream come true. Such a sweet soul, funny, and is so good with all of my boys’ but especially Ronan. We love having him here and spending time with him. I think it is really good for Liam and Quinn; it is good for them to have somebody to look up to who is a little closer to their age. Thanks Heidi for letting us borrow your Lukey. We love him like one of our own:)

Tomorrow we are having another low key day. I’m going to breakfast with a few girlfriends to go over isolation things in the morning and then we are planning on watching the Superbowl over at Uncle Jay’s house. He lives right around the corner so if Ronan gets too tired, I can just walk him home. I may try to sneak in another hike before my insanely busy week starts. My body is already beyond sore and it is a feeling that I miss so much. Before all of this exercise was my stress relief. It’s hard not to have the consistency of that in my life anymore as I don’t have any other outlets. I’ve got to make the most of these couple of weeks before transplant.

Ronan is curled up beside me. Luke has been in my room reading him some books and cuddling up with him. So cute… he loves to love on Ronan. It has been such a nice family night at home tonight.  We have really been needing this time together. I’m finally getting a little sleepy so time to shut things off. Hope you all had a great Saturday; thanks for checking in with us. Sweet dreams!!

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

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)

A breath of fresh air

I spent today enjoying everything to the fullest. Woody and I made a big breakfast together for the boys, Mimi and Papa; who came over to take Liam and Quinn to get their flu shots. I ran some errands alone which was nice. I then met Woody over at The Village to watch Liam and Quinn’s basketball game which was the highlight of my week. Danielle, her amazing boyfriend, Dave, and Trish came to watch as well. It was such a great game and I found myself laughing and cheering the entire time. The twins played awesome… it was like a switch flipped and all of a sudden they get it. They were hustling up and down the court, throwing great passes, guarding their guys, they each made a basket and played with the most heart that I have ever seen them play with. I was grinning ear to ear watching them and seeing how much fun they were having. The most beautiful sight that I have seen in a long time. I loved sitting with my sweet friends too and hearing them laugh and cheer right a long with me. Liam and Quinn were so excited to have an audience<3 I wish I would have recorded it all but it will forever be engrained in my brain. There is nothing like watching your kids flourish at something they love. My heart is sooooo happy today. I feel like a whole new person…. well, maybe more like the older version of myself;  someone that I love and miss so very much.

After the basketball game, Trish and I went to Chestnut Lane for some lunch and girl talk. There is nothing like time with my bestie. It was nice to catch her up on some things that have been going on and to get to talk about our Marisa who just had her sweet baby boy, Max. I am so excited to see her and meet the newest little member of our inner circle. I am going to try to go to the hospital tomorrow to check in on them and to give Marisa the big hug that I have been saving for her. I’ve been missing her so much. Trish and I ran a couple of errands over at the mall and then we parted ways. It felt good to be out today, with her by my side. I even managed not to be bothered by being out in public. I am feeling stronger than I have in a very long time. I’m chalking it up to a very big weight being lifted off of my shoulders and the fact that Woody and I have really been enjoying each other lately. I have been missing spending time with him, doing all the little things that we used to do. Even just cooking breakfast together this morning was so therapeutic.

Tonight Mimi, Woody, and I all made a big turkey dinner together at our house. The boys played board games with Papa while we got everything ready. Ronan was pretty tired but ran around the entire night. He didn’t nap today so he finally fell asleep around 8. His energy amazes me. He had a few tantrums today…. I hate seeing him so angry. I know that anger is usually a secondary emotion so I am wondering what the first one is that he is feeling…. could be fear, or even pain. I hope he is not hurting physically and that is what is causing him to be so mad. I ask him all the time if he is hurting and he always tells me no. He has such a high tolerance for pain though so I can’t always trust what he says. I just pray that his little body is not hurting… that would break my heart. He is going through enough with everything and if he is feeling any of this, well, I don’t even have words to express how that would make me feel. All I can do is pray, watch him, and take the best care of him that I possibly can.

I am going to curl up with Woody and watch Saturday Night Live in a bit. Auntie Karen’s close friends daughter, Emma Stone, is hosting tonight. (GO EMMA!!!)You all should watch if you stay up that late. She is such a talented little thing and I love watching her in movies. She was amazing in “Zombieland.” One of my favorites:)

I hope you all have a beautiful weekend full of love and thankfulness. It is easy to get caught up in things that are not worth our time or energy, but it is even easier to just let some things go and live a life full of being true to ourselves. I know days like today are not going to come along very often for me for a while. I am going to have more bad days than good; which is a huge reason why I will forever cherish and remember today. The feeling of complete happiness is so easily taken for granted, but so easy to achieve when you know what really matters most in life.