The hands that refuse to let go

 

 

After a Friday evening meltdown, a sea of tears from both my husband and myself, we somehow managed to pull it together and put on our happy faces for the weekend. Time to pick ourselves back up off the bathroom floor and together; we did. We spent Saturday doing things around the house with boys. Lot of quality time just enjoying being together. Later in the evening Woody ran the boys’ over to his parents house for a sleepover. The twins stayed the night, but Ronan just wanted to come home so of course, he let him. Woody and I had planned on having a date night, but it didn’t quite work out that way. I had plans for an early dinner to celebrate one of my best friends, Marisa’s birthday, but was planning on spending some time with Woody after. I met Trish, Marisa, and Danielle, at True Foods for a dinner out. I tried my best not to be a Debbie Downer, but there is not pretending around those 3. There is no need to pretend either which is why I love them so much. I sat outside alone before the girls arrived waiting for our table. All I could think to myself, was, look at all these shiny happy people…. everywhere. I wanted so badly to be one of them but could barely muster up the energy to come out of the zombie state I was in. Once Marisa arrived, we sat at the bar and both had an amazing Margarita together and caught up on some things. It felt so good to be with my little M. I miss her so much. Trish and Danielle arrived soon after and we sat down for dinner. It ended up being such a wonderful evening. We talked about everything. Somehow, those girls managed to take my sadness and wash it away for a couple of hours. I was so happy to be with them and celebrate another birthday with Marisa. We talked about how we will all be together when we are 60 doing the same thing and how life will have all worked out beautifully. I can’t wait to look back on everything we are going through and have survived it. All with the help of my beautiful friends. Luckiest girl ever.

When I returned home, Ronan was still awake but he was tired and ready for bed. I kissed Woody goodnight and crawled into be with my little bug. Although I was beyond exhausted, I tossed and turned the entire night. It was an awful nights sleep once again. Ronan woke up bright and early, so I got up with him and we let Woody sleep in. Our Sunday was spent spring cleaning. Or, in our case I’ll call it, “You’re moving to New York in 5 days so you’d better get your shit together.” Woody cleaned and organized the garage, I tackled the boys’ closets, drawers, toys, my closet, and everything else that needed to be done around here. I cannot go to New York without a clear head and having everything organized to a tee is the a good start to that. Ronan happily played around the house all day and waited for Liam and Quinn to come home. Woody and I were able to get a ton done which feels really nice even though my anxiety is though the roof. I went for  a fast 4 mile run this evening to try to burn off some of my nervous energy. Oh, and Trish, if you are reading this, totally forget to text you that I made it home safely and did not get eaten by a coyote on my dark run:) My run felt nice but didn’t do much for my nervous energy. I came home to a house of happy boys’ playing sweetly. I finished up all of the laundry and the rest of the little things that were left to do. Ronan is now curled up beside me and sound asleep. Woody and Quinny are playing video games and Liam is asleep in his bed. All is peaceful here. I love nights like this.

Liam and Quinn have Spring Break this week. Normally we would be going somewhere totally fun for vacation. Not this year. Makes me so very sad. We will spend the week at home and I will do my best to entertain and soak up my time with them as much as possible. Ronan has his clinic visit tomorrow and it will be his last one before we leave for New York. He told me tonight he is sad to leave everyone to go to New York and wants to know why Liam and Quinn can’t come. I hate that we have to leave them behind. I don’t know how I am going to do this when Thursday rolls around. It is going to be beyond hard to say goodbye to them for such a long period of time. We will have to set up our nightly Skype chats. Everybody seems to enjoy that.

So much to do this week. I am trying my best to be excited for New York because I know once we get there it is going to be great, just like our last long stay there in December. I didn’t even want to come back here at that time. It’s hard; my heart is torn because it feels like it belongs in both places. UGH. Don’t even get me started on leaving Tricia. That is going to be beyond brutal. I’m still trying to convince her to move to New York with me…. best idea ever:)

Goodnight dear friends. Hope you all had a beautiful weekend.

xoxo

An old soul

Ronan had his clinic visit this morning. His levels have dropped just as we were expecting. We are so used to this chemo thing now that we know where his counts will be. What I didn’t expect wash his platelet counts to be so low. They were 10,000 today. WHAT?!?! 10,000 and not a bloody nose in sight? How is that possible? Since we started this chemo journey, anytime Ronan’s platelets drop lower than 20,000-30,000 we are guaranteed that he has the dreaded bloody noses that we cannot control. I told “A” today that maybe it’s due to having the tumor out of Ro. She smiled and I know she doesn’t think there is any correlation between the two, but I am going with what I have been saying all along…. He really is a brand new boy. He was so sweet as we were waiting at the clinic today. He sat and talked to me about all of the nurses who take care of him. As “A” walked by, he goes, “She’s so nice, Mom.” The he told me how much he loved Sharon and Kristin. He is so full of love today and is just so grateful, even though he is feeling so crummy. His ANC is at 60… which means his immune system is almost wiped out. I’m expecting it to hit 0 tomorrow. We will have to keep a close eye on him…knock on wood no fevers or bloody noses. It would be so nice to stay out of the hospital until Transplant time.

I spoke with Erin from Transplant today; she is basically Dr. Adams go to girl as far as scheduling and preparing us goes. She told me to expect to start Transplant on February 15 or 16th. Assuming all of Ronan’s tests come back with the results we are wanting to see. She didn’t see any reason why they wouldn’t, but he has to have everything from his heart, liver, and kidney checked to make sure they are functioning properly before we can get the green light. He has those tests scheduled for February 9th. So far, every time he has had his organs checked, everything has looked great. It is amazing how much the human body can take. After we get the green light for transplant, we will then be randomized to see if Ronan will have two transplants or one. You know we are hoping for two…. even though I am scared shitless at what this is going to do to my little guys body. Woody keeps saying we’ve got to throw the kitchen sink at Ronan’s cancer… and two transplants is definitely throwing the kitchen sink at it. If Ronan’s cancer comes back, it will be because we didn’t kill all of the cancer cells the first time around. Two transplants we feel, will increase the chances of killing all of his cancer.

I am trying to mentally prepare for Transplant/Isolation. I am wracking my brain for everything that I can possibly think of to keep myself and Ronan happy during his stay. I’ve been trying to think of it more like… If I were stranded on a desert island rather than… if I were trapped in a solitary confinement… what would I need?? Something tells me George Clooney may not be realistic. So far, I’ve come up with easy things such as: my computer(duh) my camera, movies, books, my coconut water (have I mentioned that I am OBSESSED with the stuff??) my yoga mat, Ronan’s favorite toys, Art supplies, his favorite bedding, his Wii and PS3. We will have to set up Skype to keep in touch with Liam and Quinn. I am trying my hardest to turn this into something really positive. Not many people get the opportunity in life to just simply “be.” I am hoping something really good will come out of this and it will make Ronan and myself even stronger. It will be a time for great reflection and learning. Tricia and I were laughing the other night because I told her I was going to study Buddhism while in Isolation. She told me she was going to make me a little sign to wear around my neck that says, “Cannot speak,” due to respecting the silence that comes with this religion. The image in my head totally made me laugh. Don’t think I’ll take it that far, but I love her for making me laugh.

I talked to my NYC Miss Macy today. That crazy pants. She texted me to see if the boys’ would like a King Cake from Nola. She is going there on a business trip soon and wanted to ship the boys one. I had no idea what a King Cake even was so I listened as she Googled it and explained it to me. I also told her that I needed her to come stay with me in Isolation. I was half joking and told her I needed her purely for selfish reasons. She told me to say the word and she would be on a flight if that is what I needed to keep me sane. I told her that we would save her visit for when we are finished with this Stem Cell Transplant and that way, we can all enjoy Miss Macy to the fullest. We are going to have such a reason to celebrate! I know Ronan is going to soar through this transplant with flying colors. He is so tough and has done so well with everything else, how could he not.

For now, I am going to soak up being at home with the boy and Woody. These past couple of days have been so sweet. I am thankful every second of the day, for all the blessings we have in our life. Ronan being the biggest one of them all. One of the night nurses that takes care of Ro whenever we are admitted to PCH says the same thing to me every time she comes in to check his vitals. She always tells me that she can tell Ronan is an old soul. This always makes me smile because I have known this since the day he was born. He has always been different; almost like he has been here many times before. He just has that look in his eyes that tells me not to be scared, not to worry, because everything is going to be alright. Looking into his eyes, I know this. This cannot turn out any other way; he has way too many hearts to break and way too much trouble to cause.