The show must go on

My skinny little chicken leg boy is finally getting his appetite back. Finally. It’s been about 2 weeks since he’s really wanted to eat. Now, I can’t keep him full. He is back to eating every hour on the hour. Oatmeal, eggs, Peanut Butter and Jelly, Fruit, Pizza, Carrots, Hummus, Cottage Cheese, Peas, Cheese Crisps… I can’t keep up! All I’ve done today is cook, clean, cook, dishes, and cook some more. It’s a good thing though… his little legs look like sticks. I need to fatten my chicken up before we go into Stem Cell Transplant. We have a clinic visit tomorrow to check Ronan’s blood levels, platelets, etc…. I’m still waiting for him to crash from this last round of chemo; but so far, he seems to be doing well. His energy is still a little low, but his spirits are great. We have really been enjoying being at home together. Lots of cuddling and down time which we both have needed. Marisa stopped by today with Baby Max. It was so nice to see her and Ronan even let her stay. He shut himself in his room at first but I finally coaxed him out. He sat on my lap and watched Marisa feed and change Max. He was very intrigued and just sat quietly, giving us a little smile here and there. After Marisa left, Ronan told me that he wanted a baby sister. Oy vey! He loves babies has been talking all day about Baby Max’s visit. He told Liam and Quinn all about Max which then led to the discussion of baby names. It was hilarious. Liam said if he had another baby brother, he would name him, Ochocinco- for the football player, Chad Ochocinco. I told him no way, so then he decided on the name Zach, for Zach Miller, the former ASU football player. Quinn was really sweet and said if he had a baby brother, he would name him Finn and if it were a girl, Isabelle. Ronan has decided that he would name the baby, Mickey Mouse. So cute. I was surprised how into the whole baby conversation they were. Just shows me what sensitive and sweet little guys I have. I’m pretty sure the baby shop is closed around here, but it was a fun conversation to have with my 3 little guys.

Tricia came over last night and we went for a quick 4 mile run. It was nice to be out with her. It was no Central Park but it felt good to be out running and it felt good to be with her. We talked the entire time and laughed a lot. I know I say this all of the time; but I don’t know what I would do without her. I could not have picked a better Godmother for Ronan, and I could not have a more amazing best friend. I so owe Woody for the rest of my life for introducing me to Tricia. Thanks Woo:) I never imagined in my life that I would need my best friend as much as I do now.

Ronan didn’t nap today, and I am listening to Woody play guitar and sing him to sleep. There is nothing more peaceful than watching Ronan as he drifts off to sleep. He is so perfect. Have I mentioned how lucky I am to have the husband I have?? He left the house this morning, worked hard all day, came home, took Liam and Quinn to basketball, dinner, came home and helped them with their homework, and now he is singing Ronan to sleep. He doesn’t even get to sleep in our bed anymore due to Ronan taking over and insisting that he sleeps in bed with me and nobody else. Woody grins and bears this…I feel awful but this is just the way things have to be for now. There are not many men out there who would be able to do this on a day to day basis, and still have a good attitude about everything. He does it all, is constantly telling me how beautiful I am while watching me fumble and fall, all while trying to pick me back up over and over again. I would be nothing without him and I’m not ashamed to admit it. He is not the lucky one. I am.

So, for the most part, today was a good day. A good day now consists of things like Ronan having an appetite, a few smiles here and there, and having my family all under the same roof. A good day now is so simple…. how could have it been so complex before all of this? How was I not grateful for everyday that I had with Ronan when he was healthy?? I guess it was because in all of my wildest dreams, I would have never imagined that my worst nightmare would come true and I would be forced to reexamine everything that I thought made me happy. What a hard and awful lesson to learn through the eyes of a 3 year old boy.

That is all for tonight. I am actually in a good mood and don’t want to spoil it with my ever consuming dark thoughts. I’m going to enjoy some quiet time with Woody and finish the movie we started last night, “Harry Brown.” Sweet dreams, my friends. Love you all!!!

P.S.

S.B. I know I am going to dream the sweetest dreams tonight knowing you are dancing and drinking your wine under the moonlight and that everything is alright. xo

Ronan’s favorite song for Woody to sing and play guitar to.

All Her Favorite Fruit by Camper Van Beethoven

I drive alone, home from work
And I always think of her
Late at night I call her
But I never say a word
And I can see her squeeze the phone between her chin and shoulder
And I can almost smell her breath faint with a sweet scent of decay
She serves him mashed potatoes
And she serves him peppered steak, with corn
Pulls her dress up over her head
Lets it fall to the floor
And does she ever whisper in his ear all her favorite fruit
And all the most exotic places they are cultivated
And I’d like to take her there, rather than this train

And if I weren’t a civil servant, I’d have a place in the colonies
We’d play croquet behind white-washed walls and drink our tea at four
Within intervention’s distance of the embassy
The midday air grows thicker with the heat
And drifts towards the line of trees
When negroes blink their eyes, they sink into siesta
And we are rotting like a fruit underneath a rusting roof
We dream our dreams and sing our songs of the fecundity
Of life and love
Of life and love
Of life and love

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

Magic Medicine…. Day 1, Round 6

I feel like I don’t have a lot to say tonight. Ronan hasn’t gotten out of bed, except to use the bathroom, since we got here on Sunday. He says his legs are hurting and does not want to walk around, go to the playroom, or anything. I tried all day to get him out of bed. I’m sure a lot of this is due to all of the pain he is in from his surgery and just feeling crummy that he is in the hospital. He has been playing with his Star Wars guys, on my iPad, watching Mickey Mouse, and we have been reading a lot of books. I did get him to giggle tonight which I really needed. I downloaded a book for him on my iPad that has Grover in it and he thought it was hilarious. He has been really sweet, but really quiet which is not my little guy. The chemo finally started this evening. It took a few hours to get him hydrated before so it was around 5:00 p.m. before it got started. He is sleeping now and I am praying that he continues to sleep without getting sick to his stomach.

Sarah came to the hospital for a few hours this morning so I could run home and shower and do a little bit of laundry. Ronan was happy to see her and didn’t even put up a fuss when I left. She is so good with him and he loves her. It was nice to get out of the hospital for a few hours just to be at home. Felt a little sad and empty though. I try not to remember my old life too much anymore because it hurts so much. I am mostly just numb to everything and going through the motions. It’s all I can do right now. I am trying to come up with a way to make this whole isolation thing easier on everybody. I worry about Liam and Quinn a lot. I am thinking I can set up Skype and do things like help with them with their homework, etc…. I miss doing normal things like that with them and I worry that they are going to suffer. They are at an age where they are going to remember this time in their life and I am trying to figure out how we can make this into something that makes them stronger little men. Woody took Liam and Quinn to the Suns basketball game tonight with their entire basketball team. They called me when it was over and they were on their way home. I heard Quinn tell Woody it was one of the best nights of his life. I am so glad they had such a good time, but hearing him say that felt like I had just been slapped in the face. Bittersweet. It was one of the best nights of his life, and I wasn’t there. Makes me sad. All the time.

My girlfriends keep telling me they are going to kidnap me soon to take me out for an unbirthday celebration. I love them all so much, but I honestly feel like burying myself in a hole and never coming out. Hospital depression maybe? Or maybe just sad because my baby has cancer. I know things with Ronan could not be going better, but I am the one who has to watch everyday as he suffers and goes through what he is going through. It is the hardest thing to see and watch; and all day long I push my fear and sadness away to be happy and strong for him. Nights get me, when he is asleep and I have nothing to do but sit with my thoughts and watch him sleep, praying that every little whimper he makes is not due to any pain he is feeling. I will have to watch him closely tonight. This round of chemo is nasty stuff. I’ve gotten so good at the “cancer lingo,” and knowing what exactly the side effects are. Words like, Vincristine, Doxorubicin, and Cyclophosphamide, roll off of my tongue with such ease as if I’ve known them entire life. They are now words that I will never forget, no matter how hard I try.

Alright, that is all for tonight. I am going to get out my own head before it’s too late and I can’t get my thoughts under control. G’nite, sweetest dreams to all of you.

xoxo

Hellllloooo Phoenix

Home. Safe and sound. Tonight, my life flashed before my eyes as I pictured not having Ronan on a private jet to get him home. I seriously was almost sick to my stomach and I looked over at Trish and said, “Could you imagine if we would have had to fly home on a commercial flight??” She said no way. If that would have been the case, I don’t think I would have taken Ronan back to Phoenix. I think I may have possibly said screw the study. I know I was not going to say thank you anymore but I’m sorry, SB. You have no idea how much stress you saved me. Thank you again, and again, and again. A commercial flight would have been HELL. He is so miserable right now and was so miserable on the flight. Thankfully, he was able to stretch out and actually lay down on a big seat and rest. He was cranky, hurting, and not a happy camper at all. You should have seen the way he lit up as soon as we touched down in Phoenix and he watched as his two brothers ran and got on the plane to hug him. Oh, it was so sweet it brought tears to my eyes. We loaded everybody into the car and headed toward PCH. As soon as we approached, Ronan asked where we were going, and we had to tell him to the hospital. I watched as his little lip quivered and he said he just wanted to go home. Once again, I was almost sick to my stomach. He was so sad but was too tired to put up much of a fight. Right as we pulled up to PCH, our two favorite nurses, Danny and Arica came walking out. I could not have been happier to see them. Arica gave me a big hug and they were so happy to see Ro. They are both working tomorrow so I know that will make Ronan happy. Liam and Quinn cannot even come into the hospital due to it being RSV season. How is he going to survive without seeing his brothers for the next 10 days? We are going to have to get Skype set up pronto. Ronan is now passed out with his antibiotics running. My poor little guy. He has been through so much and is so strong and brave. I am so sad that he has to go through all of this. It breaks my heart on a daily basis; especially when I see him not acting like himself, like he is depressed and sad. I miss his laugh and smile so much. It’s been a few days since I’ve seen it. Maybe it will appear tomorrow on my un-birthday. That is the only thing I want for my day tomorrow, is to see Ronan smile.

So tomorrow is my 1.11.2011 birthday. It’s supposed to be extra special, right? No thanks. I told Woody tonight that tomorrow is officially my un-birthday. I have actually been being a little bratty about it to anyone that brings it up. I was talking to my friend Pam tonight and she goes, “So happy birthday tomorrow…like it fucking matters.” I said, “THANK YOU! Finally, someone who gets it!!!” She told me she absolutely gets it and I have the right to have an un-birthday. My wish for my birthday tomorrow is for all of you just to think about Ronan, and all of the other kids who are suffering. Take my day and pay it forward to someone else… buy the stranger behind you a coffee at Starbucks, make someone smile, and then think of Ronan when you accomplish this. Take my day and hug your kids extra tight and be grateful for everything you have. I have everything I could ever wish for in my life, except for Ronan’s health. The thought of “celebrating” my birthday seems so unimportant and silly. So no birthday for me tomorrow. Just another day, with my beautiful son, is all I could ever want or need.

So, back from New York and I’m still having mixed feelings. I’ve been pretty upset about having to return so quickly when Ronan is so not feeling well, but I know it’s not going to do me any good so I’m trying my best to change my attitude. This is just not the way I pictured coming back here at all. I wanted to come back from such a positive trip and transition Ronan back to Phoenix in a positive way. By taking him straight off of the airplane, fully healed from surgery, and back to his house and to his brothers. Not straight from an airplane right to PCH for another 10 days. But here we are, and we will make the best of it that we can because that’s just how we roll around here;). I will get Ronan through this and soon we will be home for awhile, before transplant and it will be oh so sweet.

G’nite to all of you out there. Sweetest dreams.

xoxo