Time, compassion, remembrance and empathy does not come in the form of a pill.

She is changing the world. She is getting shit done. She is moving mountains. She is on of the biggest reasons that I am alive. She is responsible for saving my life. I am thankful every single hell on earth day for her. I love you, Dr. JoRo.

http://drjoanne.blogspot.com/2012/03/relativity-applies-to-physics-not.html

We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


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:)