An Inferno Dark Death Hike that should have resulted in a Heart attack.

Ronan. Someone had a party in your room last night and it was not you. That would have been me and my friend, Ambien that I have not taken for weeks now. It’s funny how just when you think you are making progress with little things like a normal sleep schedule and BAM! Out of nowhere, 10 giant steps back. Where is my natural sleep remedy, your New York Miss Macy when I need her? And why does that girl always relax me so much that I sleep like a baby when she is around? Insomnia strikes again tonight as well. Good times around here.

I had a meeting this morning. I felt like a zombie. I took your brothers with me. They quietly sat at the table with us and ate their breakfast. Not a peep was made. Sometimes they are so good that it makes me want to scream, but I was thankful for it this morning. After my meeting in regards to the Sept. 29th event, I ran your brothers to basketball camp. I went by Dr. JoRo’s office to sit and get some things done. She has been letting me use it while she hasn’t been there. I think I was pretty productive but I ended up crying hysterically when one of my MISS mama friends, popped her head into the room to see how I was doing. I tried to say fine, but the tears that followed told the truth. She came and hugged me and sat with me for a while. She told me about the dream she had of you. She asked if there was anything she could do. I just told her no. That there was nothing, anyone could do. She said she knew. I left there shortly after that as I had to pick up your brothers. We came home and spent the rest of the day, hanging out. I made them lunch and tried to do all the normal things that a normal mom does during the day when she does not have a dead child. It still feels foreign to me to go on with normal day to day things. I would give anything back to go back to our cancer world where all I did was take care of you and your brothers when I could. It is such an unfair world but it is so much less cruel than this. Your daddy came home and I told him I needed to go hiking. He took your brothers to Costco and to play basketball for me. I headed up to Camelback around 6:30 p.m. It was still so bloody hot out. I hiked that mountain as fast as I could. At one point my heart was racing so quickly that I thought to myself, I wonder why my body doesn’t just give out and have a heart attack right here. I wonder if this is what it feels like? I was panting so hard trying to get up the last stretch that I could not even breathe. There was some dude behind me. Ummmm, no way was I letting him beat me. He didn’t. I won the little made up competition in my head. I fell to the ground at the top as I could not even stand. I sat there and tried to get my heart rate to come down. I was dry heaving but due to not eating the entire day, I had nothing to throw up. I know I should have been up walking about but my legs would not let me stand back up. I soaked up the bright pink sunset. It was gorgeous up there. I spent way too long at my church, but that tends to happen to me up there. I could sit for hours and talk to you. It was already dark as I headed back down. Dark on Camelback is not a good or safe thing. The trail is steep, rocky, loose gravel everywhere. I did my best to navigate my way down with the little light that was left shining from the moon. I left my headlamp in the car. I was in a fuck it all mood today so fuck it all is what I did. The headlamp did not stand a chance of making it into your little backpack. I got down, somehow. Guided by you of course. It’s the only way I get through things now. I came home, threw off my drenched clothes and got in the shower. I felt so tired that I was sure tonight was going to be an easy night of sleep. I snuggled up to your daddy. I tried to be peaceful but that did not work. I ended up throwing pillows, tossing and turning only to wake him up from his very peaceful sleep of slumber. I told him I was sorry, I loved him, but had to get out of our room. He said it was alright but I know how much he misses me when I don’t sleep in our bed with him. Maybe I’ll attempt to go back there later.

I found out something from Fernanda today. Something that she didn’t tell me but she should have told me. I am just thankful that it is you, who is watching over her and taking care of her to make sure she is o.k. I know she has been talking to you a lot and asking you to help her with some things. You are being such a good, brave boy by taking good care of her so nothing can happen to her. I need her here, for a very long time. Remember how good of care, she took of us? I won’t ever forget it. Now it’s your turn, to take care of her, o.k. baby boy. I know you always are. Thank you for that.

I’m queasy probably from the way I over did things today. I’m getting sleepy. I think I’ll go and cuddle up to that daddy of yours. Goodnight baby doll. I’m so sorry. I miss you. I love you. I hope you are safe.

xoxo

A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo

Happy Fucking Mother Fucking Birthday

Ronan. I think I thought last year was a hard birthday for me to celebrate. I’m pretty sure I bitched and complained about it. I wish I would have known then, what I know now. That last year, was the best birthday of my life. I know we were in the hospital. I know we spent the day, in your bed, cuddling and playing Star Wars. I would have given anything, for that day today.

My birthday is almost over. Thankfully. I expected it to be hard. It was a day full of ups and downs. You would not believe all the beautiful things people did for me and said to me. It was a day where I had so many people try to make me smile. I smiled over a few things. It was a day full of lap dances, Miranda dances, Purple, Skulls, kisses, hugs, tears, phone calls, text messages, FB messages….. and so many beautiful people. Want to know some of my favorite things that I got told? I have a few that I can remember. Someone told me how it was just another day, right? And 2011 was officially the worst year ever. I exhaled when I read that. YES. THANK YOU. I’m being serious too, Miss J. I so appreciated your honesty. Somebody told me, “Happy Fucky Birthday!!” I laughed over that one. Thanks Sarah. Somebody wrote to me, “Happy RObirthday!” I loved that one. I got a lot of “Happy Fucking Birthdays!” I of course, loved those too. The card above is from one of the sweetest souls I’ve never met but I hope to someday. Her card made me smile from ear to ear. Thanks, K.

I spent the day trying to be kind to myself. Something that is hard for me to do now. I spent the day, just trying to get through the day, without you. I couldn’t believe I had to spend my birthday, without my best friend. I worried about you a lot today. I missed you so much. I cried a lot. I just wanted to today to be over. I told your daddy that I was so mad that I was having another birthday, and you were not. Dr. JoRo texted me to see how I was doing today. I responded back to her, “Bloody fucking fucking mother fucking awful. Shaking a lot. Going to try to run some of this off.” She said her birthday was always hell for her too. She said she was going to do some sort of kindness act for you tonight. That made me smile. I went for a run. It didn’t stop the shaking of my hands. Nothing does.

The whole not celebrating my birthday did not work either. It turns out…. the lovies in our lives were not having it. So the day and night was filled with more I love you’s, than ever. Your daddy picked up your brothers from school for me. My mind was in one of those moods today where it played tricks on me. I had myself convinced that you were going to come running through our front door yelling, “Happy Birthday, mama!” I sat and watched out the window for your daddy’s car to appear with you and your brothers in it. I imagined how you would all tell me that this was indeed a sick joke and you were alive and well. I imagined your daddy telling me he had brought you back to life, for my birthday. I know you know how this turned out. None of this happened. Not any of this, came true. Your daddy and brothers took me to AZ88, one of my favorite restaurants for dinner. I blew out my birthday candle. I made one wish. The same one that I make 50 times a day. I hoped, wished, and begged that you were safe. I put on my best face and thanked your brothers and daddy for such a nice birthday. We came home and we all snuggled in our bed and watched part of a movie. Quinn asked if the two of us could sleep in your bed again tonight. I told him o.k. We snuggled up, I kissed him goodnight, we said goodnight to you, and he soon fell asleep. I’ll sleep with him in your bed again tonight. It makes me sad that your bedroom is so empty now. I feel so guilty that it is so sad and lonely. I have been sleeping in your room just to mess up your little bed and to cuddle with all of your Master Yoda‘s and monkey friends.

I ended tonight with a phone call from one our favorites, New York Miss Macy. Fucking fuck I miss her. The phone call started off with me crying so hard, that I couldn’t even talk. It ended with us both in fits of giggles. Her ability to bring the laughter and sunshine out in me is a gift that nobody else has the capability of doing. She asked me what I was going to do in NYC. She asked me if I was going to visit Sloan Kettering. I told her I didn’t think so, unless I wanted to end up in jail. I told her I was pretty sure they had me on a watch list, after the letter I sent to Dr. Kushner. We cracked up at the thought of me wearing disquises, in order to get into the hospital. She said she knows I could pull off some awesome mustaches. We cracked up at the thought of this. She misses you so much too.

I’m going to end this tonight now, Ro. I miss you so much. I’m so sorry. I hope you are safe. G’nite, sweet dreams, I love you.

xoxo

Dear Loveliest of Lovelies,

Thank you all. For being so kind, sweet and thoughtful. Thank you for taking the time out of your day, to wish me a Happy Birthday, Unbirthday, Fucking Fucked Birthday, not a birthday, a Wild and Free Birthday, a RoBirthday, and all the other creative things you came up with. You made me smile through my tears. You made me feel loved. You made me actually feel which is hard for me to do though all the numbness. You all are the best RoFriends a girl could ever ask for. I know Ronan is so thankful for all of you. So am I.

I love you all.

xoxo

Therapy in the form of Britney Spears

 

 

Ronan. Hi baby doll. I miss you. I fell asleep last night thinking of you and I didn’t even take my Ambien. I was so exhausted from crying, that I pretty much passed out as soon as my head hit the pillow. I was hoping to dream about you and I did in a way. The dreams I have now, that I remember, are pretty much the same theme;  just with different people involved. It’s always me talking about how you died and the people in my dream are always comforting me. I have yet to see you….. it’s always me talking about you. Last night, I had a dream I was at Dr. Campbell’s House and we were talking about you and your death. Everything in her house was white and there were animals everywhere and I remember she had really funky art everywhere. It was a very vivid dream and I remember every detail. The only thing missing in it was getting to see you. Maybe tonight you will visit me. I woke up feeling extremely hung over. I am sure this had to do with the 6 hours I spent crying over you pretty much non-stop last night. It was a release I very much needed. I didn’t want to get out of bed this morning, but I had too much to do, so I didn’t have a choice. The day went by pretty fast and I stopped by our house once to pick some things up. I went in, said hi to you, and gave you a kiss. I then returned back to the hotel where I am staying and was able to relax a little before my silly night out.

I did something tonight for the first time in a very long time. I had fun. And I didn’t feel guilty about it. I went over to Auntie Karen’s house and picked up our love, Liz, to go and do something very special to us. Something that will always be our sisterly connection and bond. Something that is a tradition to us. We went to the Britney Spears concert. We talked about you the entire ride out there. She still can’t wrap her 21-year-old mind around you being gone. I told her I know because I feel the same way. We both talked about how it feels like you weren’t even real. You were just too beautiful, too powerful, too strong, too wise, and we both said how you were unlike anyone that we had ever known on this earth. It felt good to talk to Liz about you and to listen to her talk about you to me. She loves you so much and you were crazy about her.

Once we arrived to the Jobbing Arena, we sat in the car for a while and watched all the people in their crazy outfits walk by. It was such entertainment and I finally found myself relaxing. I had mixed feelings about going tonight, but I am so glad I did. Dancing my butt off to Britney Spears’  “I’m a slave for you,” while Liz’s arm was intertwined with mine, is exactly what the doctor ordered. We danced, laughed, talked, sang, and it all felt good. I needed this tonight to remind myself that I am still alive. I’m not dead like I have felt for the longest time. Feeling alive for those 3 hours that we were there was so therapeutic. I told Liz how much you used to love Britney and how we used to dance to all of her songs together when we were doing chores around the house. She loved hearing that. After the concert was over, a huge thing of sparkly confetti was shot off into the air. It was all purple and Liz and I were covered in it and hysterical with laughter. We squeezed each other when we saw what color it was. Your favorite color, Ro. All for you:)

I’m going to get some sleep now as it is late. Thank you for showing me that it is o.k. to be happy even though I am so sad. Thank you for showing me that happiness will exist in my life once again. I can feel you pushing me with little signs here and there to make me smile. To make me feel something other than pain. I know you don’t want me hurting for the rest of my life, 24 hours a day. Thank you for the break tonight from this pain. I love you to the moon and back, baby. Sweet dreams. I hope you are safe.

xoxo

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo