Let the hiding begin….

Hello. Hope you all are well. I have officially gone into hiding. So much so, that my 3 besties had to bust into my house on Sunday morning to make sure I was o.k. I felt like I was on that show, “Intervention.” I don’t mean to shut everyone out; but it’s what I do best. Being home has been great and I have been loving spending time with Liam and Quinny. I could easily stay in my house and never leave again because when I do go out, the anxiety is still too much. Woody practically kicked me out of the house last night and made me go to a movie. I picked up Linds (my go to last minute girl… thanks mama) and we went to see “Black Swan.” Good movie, but I should have picked something a little less dark. After I dropped off Linds, I was driving home and the tears started up and I couldn’t get them to stop. I had to pull over because I couldn’t even focus on my drive. I’m not going to tell you what thoughts were consuming me…. but I’m sure you can guess. I still don’t think this is real. I still can’t wrap my head around the fact that my perfect little boy is so ill. It seems like yesterday that he had a head full of hair, and was running around always looking for trouble. I can’t tell you how much I miss that little boy. The little boy that I could never get mad at because one look at those bright blue eyes and that mischievous smile and I was done. I always ended up laughing at whatever naughty thing he did. Well, most of the time:) Now, I get to watch as he is too weak to walk and wants to me to carry him all of the time. Now I get to lay next to him and know that every breath he takes is a blessing and every kiss he gives me is a dream come true. Every tear that falls down my face is for him and I think about what sadness was like before all of this. Before all of this, sadness should have not existed in my world because I absolutely had nothing to be sad about. Everyday is a struggle for our family; nothing is easy anymore. I am doing what I can do to push through the motions, I am doing what I can do to survive. I am still numb to everything around me, except for pain. I feel that every second of the day.

We got a call from Radiology today and we have all of Ronan’s scans set up. February 2nd, Ronan will go under Anesthesia for his Bone scan. February 3rd, he will go under Anesthesia again for his MIBG, Pet scan, CT scan, and MRI. These two days are going to be very telling for us. After these scans, we will know exactly where the cancer is left in Ronan’s body and from here we will find out when we start the stem cell transplant. We already know that it is clear from his bone marrow; but the MIBG scan will be the most telling of them all. A MIBG (iodine meta-iodobenzylguanidine) scan is a test used to find tumors of a specific origin. This scan will light up Ronan’s whole body to show us where the cancer is still active. Of course we will be praying that it has diminished immensely. Ronan has come too far and worked too hard for it not to.

So, this is my update for today. Tricia was officially concerned because I have gone off the radar; so here you go Tricia Boo. I’m here, or I’m here as much as I can possibly be. I haven’t been talking to anyone so I hope none of you are offended. I miss you all but just need some time to get back in a routine at home. I miss my New York Miss Macy dearly. I will think about the time I had with her and Tricia in New York when I need to smile. The time spent with those two and Ronan meant the world to me. It felt so good just to be and laugh, even though we were in a hospital with my baby who has cancer. True friends that can make you smile and laugh during the hardest times in your life, are the truest of the true. I love you both so much.

9 thoughts on “Let the hiding begin….”

  1. Hang in there and do whatever you have to do to cope. We understand are are always here for you. Thanks for the update.

  2. That made me cry. So unfair. I can’t even begin to imagine. I do know that you are so strong even if you don’t feel like it. I can tell you are. And Ronan is a hero (I know I’ve said it before, but I could say it all day). His spirit is the strongest. I’m praying that nothing glows on those scans, that there is no cancer left, and that the stem cell transplant will just make sure it never comes back. By heart breaks for Ronan. Every single time I see his face on my computer screen, when I get in my car and see the picture I printed out of him to put in there. I think of him all the time. There’s only been one other time in my life where I even got close to praying, hoping, wishing, or believing this much. I’m believing. Sending you lots and lots of love…
    COLE Prayer Team – http://www.colesfoundation.org

  3. Dont appologize for going radio silent !!!! you have earned it and it wont be the last time you do it. Glad you are recharging those batteries and getting some quality home time!! Every day is an adventure and you guys are doing a great job! Be well and use my AZ peeps if you ever need them.

    The Lynch family

  4. I love you, Maya! I still can’t believe you went to see Black Swan. For future, you are not allowed to go to any movies until you run them by me, ok? 🙂 I will cherish the time you, Ronan, Trish and I spent at Sloan forever. You are such a special friend and if I could take away your fear, anxiety, and depression I would. I know Ronan has a tough journey ahead of him but he WILL get through this and so will you and the boys. I cannot WAIT to come out for a visit after his stem cell transplant. I know without a doubt in my mind that good news is on its way! xoxoxo

  5. Hi Maya,

    This is Ellen, Phoebe;s mom. We are back at Sloan this week for Phoebe’s 17th round of chemo with one more to go. I feel every word you write and wish I could take away some of the pain and suffering. The only thing to believe is how strong Ronan and your family are. That is going to get you through all of this. It is so hard all around – there is no getting around it, but as we have learned there are some bright spots like the amazing support of friends and family which sounds like you have. I think about you all of the time and hope the scans show good news. We are sending you love, prayers and only good things. Lots of love, Ellen

    1. So good to hear from you! We think about you guys a lot, and have been keeping in contact with Jonathan as well. Please tell Phoebe to hang in there… she is so close to being done! It was such a pleasure to meet you and your beautiful daughters. I am so glad you are surrounded by such amazing family and friends. Please keep us updated on Phoebe’s progress. Does she have a website?? My email is mayawoody@gmail.com if you need anything…. even just a voice talk to. Enjoy NYC for us! We miss it so much! xoxo

  6. Still praying for you all. My son is scheduled for an MRI on feb 3rd as well so we will definitely be praying for you on that day. Stay hopeful!


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