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 ❤

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


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7 thoughts on “We’re not married…. we’re still dating;)

  1. sheryl

    Ugh! What a day! This darned thing is just ALL CONSUMING! I can see why you can’t focus on anything else but this… Your husband is amazing and it’s great that you have each other. And it’s great that you have such good friends by your side. Hang in there and keep your chin up (as much as you can). You are doing great. I can’t wait to see pics of Ronan graduating from High School and getting married!

  2. Pingback: Tweets that mention We’re not married…. we’re still dating;) « ROCKSTAR RONAN -- Topsy.com

  3. Marcy Shipman

    I have not been able to read the blog for a couple days, so I just got caught up. I am truly devastated at the recent news. I don’t understand how basically a role of the dice can determine a child’s fate. Like you, though, I believe that there truly is a power above controlling everything, which is the comfort in all of this. Ronan will do this his way, with the guidance from above. I know whatever path he takes, the outcome will be amazing and inspirational! I will continue to send many prayers your way.

  4. Denise Kivela

    My only comment is you must put ALL your faith in JESUS CHRIST.And then BELIEVE WITH ALL YOU MIGHT!IT WILL HAPPEN!BUT YOU MUST RECOGNIZE THAT IT ISNT JUST A HIGHER POWER IT IS:JESUS CHRIST PERIOD!!!HE WILL TAKE CARE OF YOUR BABY BOY!!

    1. K.J

      Great advice!!!! Jesus is our healer, strength, wisdom, and comforter. You have to trust in him 100%. We wont ever understand why we go threw the terrible things of this world while we are on this earth. Someday if you believe in Jesus you will get your answers. Believe in Jesus and he will guide your decisions and steps that you need to make it threw this. I pray every night for these things for Ronan, you and Woody. I pray so hard for you guys. I really know that the end will be positive. . On another note you are soooo lucky to have a wonderful husband. You are doing a wonderful Job Maya being the strength and comfort for Ronan, and daddy is doing a wonderful job doing his research.

  5. chrisie

    hi – i am so sorry that you are faced with such a difficult decision. this disease sucks – no 2 kids are the same – and nobody knows what works for sure. it is unbelievable that we as parents are forced to make these medical decisions for our child. you are right, you have to trust your gut and you have to trust the dr’s caring for ronan. you will make the right decision for ronan and your family. thinking of you and sending prayers.
    love
    chrisie

  6. K.M

    This stupid stupid stupid Cancer can (excuse my language) SUCK IT! Ronan is a warrior and will put this dumb-ass disease in it’s place! What you keep saying is so true NO-ONE is like your lil Rockstar he has his own path. Like you I have always had a crazy intuition and since I’ve been following your blog (October) I have always just known Ronan will beat this, I truly truly feel this as I know others do. Go with your gut, it’s gotten Ro this far and we all know that it will heal him! God Bless you & thanks for keeping us all in check about what is truly important in life (:

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