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

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!!