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

The happiest day of my new life

I got a phone call from Dr. Maze today re: Ronan’s scan results. He told me as much as he could, which was so nice of him to do. Waiting is the hardest part and he instantly put me at ease with his news. Woody heard from Dr. Eshun around 5:00. We have some very good news to share tonight. 2 weeks ago we were told to expect the mass in Ronan’s abdomen to shrink around 20-25 percent, but not much more than that. Dr. Eshun told us tonight that the mass has actually shrunk 47%. That is huge news for us! We could not be happier with those results. It is still in his bone marrow, and there are a couple of other areas they are going to watch… but nothing else has progressed or started to grow, so Dr. Eshun is very pleased with what he is seeing. I fell to the floor after hearing this news… and cried like a baby. All I could think about was how I knew Ronan would fight this as hard as he possibly could. He is proving it by the results we are seeing and how well he is handling everything. He is so unbelievably strong. He is fighting so hard for us all of us, because he loves us all so much.Today has been such a happy day for our family, a day full of hope and a big sigh of relief. We still have a long road ahead of us, but today was a victory for us. Tonight, we will sleep a little better and dream a little sweeter. We are so full of hope and joy and are going to continue to love Ronan so deeply and so much that it kills all of his cancer. We are doing everything we can to surround him with positive energy, laughter, and love. We will continue with his treatment plan and pray that we continue to see amazing results.

I had lunch today with 3 lovely ladies. I finally had the chance to meet another mom, Lara, her son was diagnosed with Neuroblastoma and he is now 10 years old. They live here and are very involved in raising money to fund less toxic treatments for this disease and to find a cure. I cannot tell you how much meeting her meant to me. Her son, Noah, is alive, healthy, and is so full of love for life. He beat all of the odds and is living proof that miracles do happen. Lara gave me a lot of great advice and seeing her courage and strength was so very inspiring. I can’t wait to meet Noah someday and introduce Ronan to him.

I  also saw a therapist today. I knew within 15 minutes of our session that she was the one. Intelligent, compassionate, and we meshed well. She gets it. You want to know how I really knew she was the one for me?? She asked me about Ronan’s cancer, she asked me to tell her what his treatment plan entailed. I went through the list of 5 rounds of chemo, surgery, another round of chemo, stem cell transplant (maybe 2), Radiation, and the last blast of antibodies. She looked at me and goes, “Does cussing offend you?” I go, ” No, quite the opposite.” And she goes, “Good. Holy shit.” Ahhhhh, a woman after my own heart! I loved that she was so raw and blunt. I don’t need any sissy pants, sugar-coating, therapist. I need someone who understands that this is one of the worst possible things to happen to a parent and who can look me in the eye and tell me it’s bullshit, but she can figure out how to get me through it, so I don’t have to check myself into a loony bin. This lady is going to be that person for me, I can already tell. I feel better than I have in a very long time. I can see little pieces here and there of our old life coming back. It’s like there are little flickering pieces of glitter floating through the air and every once in a while I’ll catch one. I caught one yesterday when I spent a few hours with Woody. We went furniture shopping and to lunch. I can’t tell you how important those few hours were with him. I allowed myself to forget about Ronan’s cancer for a while and just enjoyed spending some time with my husband. It was a beautiful day spent with a beautiful man.

I just want to tell each and every one of you who are reading this blog, following Ronan’s journey, praying and thinking about us, thank you from the bottom of my heart. I will say this over and over again until the day I die… I know he feels your love and I know all of the love, prayers, and positive energy are working. There is only so much medicine can do, so please continue to do whatever you are doing for him:)