The path is not clear, as the road is long


I feel like I’ve run a marathon today because of everything I got accomplished with a lot of help from my friends. This morning started off busy and I woke up overwhelmed by everything. We still had not heard back from Dr. Kusher from Sloan Kettering to see if he was o.k. with Ronan starting 2 more rounds of chemo here and then having him rescanned. We were waiting to get the green light from him. I called Fernanda and she said she would be over after she dropped her little one’s off at school to help me tackle my “to do” list. As soon as she got over here we started to go over the things we needed to get done. Soon after, we got a phone call from Woody and I put him on speaker. His exact words were, “I need you and Fernanda to take Ronan to PCH now and demand that they start him on his chemo or else we’re taking him to New York tonight. We left the house as soon as possible and it looked like a bomb went off in it. Auntie Karen was sweet enough to come over and tidy things up for me because I was afraid we were going to have to stay the night at PCH tonight and did not want Woody to come home to a messy house. Thank you to the best fairy godmother in the world. Woody would have had my head if he had seen that mess!! Fernanda and I busted into PCH to explained our situation as best we could. I knew getting them to start the chemo today was probably not going to happen, but we insisted that they put the order in and start it tomorrow at the latest. I don’t think they were too happy with us but we don’t have a choice and waiting even a day to get things going is not o.k.  We finally got everyone on the same page and tomorrow Ronan will start his 7th cycle of chemo; one he has never had before. He will be starting Temozolomide and Adriamycin which are supposed to be tolerated fairly easily. We will do these two rounds of chemo and then take Ronan out to Sloan Kettering for his scans. We are basically buying ourselves more time to make a decision and exploring every possibility for our son. If these two rounds of chemo work, and Ronan has less disease, we are keeping the transplant door open. We are also going to squeeze in a consult in San Francisco, Philadelphia, and New York. We have no choice but to explore everything that is out there.

Ronan’s chemo will be done at the clinic tomorrow and Friday so we don’t have to stay the night at the hospital. We will check in to PCH for the rest of his chemo Saturday-Monday. I feel very comfortable with the plan as of now. I have a great feeling that these two more rounds of chemo are going to give us the results we want to see and will lead us to the direction we need to go. I am so thankful for the beautiful soul of Doctor Adams yesterday in suggesting this. For the time being, we are back on track with a plan. This gives me peace ❤

After we got home from the clinic, Ronan and I took a little nap together. It was so sweet. There is nothing more precious than having Ronan say to me, “I’m going to cuddle you mom.” And then nuzzle his little head into my arm. I wasn’t really tired but he was so cozy and peaceful that I fell asleep with him anyway. My friend Gay came over and helped play with Ronan so I could get some things done. She also got me a phone call with a woman named Karen Kudro. Her daughter, Hailey, was diagnosed with Neuroblastoma at age 5. They did a lot of her treatments at CHOP in Philly and Hailey is a healthy and beautiful survivor. I was so grateful that her mom took the time to talk with me today, even though they are in Disneyworld for Hailey’s Make A Wish trip!! She didn’t have to take the time to call Gay back at all, but did and she gave me a lot of insight that was very helpful. People out in this world are so amazing. I am blown away everyday by the kindness of strangers. Having this happen to Ronan has made me realize that I need to work so hard to be the best version of myself that I can possibly be; even though there are many days that I just want to give up, I just can’t and won’t. I find myself doing things I wouldn’t have normally done in my so called busy life before all of this. There is a lot less unnecessary anger in my life and I have such a high tolerance for not letting the little things get to me anymore. It is much easier to find the beauty in each and everyday than it used to be. The most beautiful things are the simplest.

After Gay left, Stacy called to asked if I needed her to come over to help me get ready for tomorrow. Nevermind that she had just worked a full day and had her gorgeous babies and husband waiting at home for her. I couldn’t pass up the chance to utilize her help. My pile of papers, bills, receipts, has been eating away at me and I told her Woody was about to divorce me over it. She showed up and we tore through everything and got a ton of my to do list done. Talk about an amazing feeling!! I could not have done it without her. Seriously Stacy, you may have saved my marriage tonight;) And my sanity. I can go to PCH tomorrow with a clear head knowing that most of what I need to get done, is done. Thank you my dear friend. I am the luckiest girl alive to be surrounded by these amazing women. Thank you all for taking such great care of us and helping in any way you can even if it’s little things like dropping off a coffee (Heidi) or calling to check if I need anything from the grocery store (Melissa:) Ed- (So excited about the Zico Coconut Water that arrived today!)  I have the best group of girlfriends one could ask for and every second of the day I am so thankful.

I am ready for what the world has to throw at me tomorrow and can go into my day with a clear head. One day at a time, baby steps. Today, I sent my Mr. Sparkly Eyes a text and it said… “Ronan is going to get through this, I just know it. He is so strong.” His response was, ” You and Ro are BOTH going to get through this.” He knows it, he feels it, he believes it. I like to call him my very own Master Yoda and the fact that he believes this is true, tells me my feelings are 100% right. Everybody I know feels this way and that says so much. It’s just like Woody said to me today which made me laugh out loud. He said, “Ronan is a superfucker. It would only make sense that his cancer is too.” He means it in the sweetest way possible… that Ronan is so strong, that of course his cancer is as well. It would only make sense that this is the road we have to take; Ronan wouldn’t have it another way.

Goodnight sweet angels out there. Goodnight Moon. Goodnight Ro Baby, Liam, Quinny Q, and Daddy Woo. Goodnight New York Miss Macy. See you in my dreams. Sweetest dreams to all of you.

xoxo

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One thought on “The path is not clear, as the road is long

  1. Pingback: Tweets that mention The path is not clear, as the road is long « ROCKSTAR RONAN -- Topsy.com

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