I feel like I don’t have a lot to say tonight. Ronan hasn’t gotten out of bed, except to use the bathroom, since we got here on Sunday. He says his legs are hurting and does not want to walk around, go to the playroom, or anything. I tried all day to get him out of bed. I’m sure a lot of this is due to all of the pain he is in from his surgery and just feeling crummy that he is in the hospital. He has been playing with his Star Wars guys, on my iPad, watching Mickey Mouse, and we have been reading a lot of books. I did get him to giggle tonight which I really needed. I downloaded a book for him on my iPad that has Grover in it and he thought it was hilarious. He has been really sweet, but really quiet which is not my little guy. The chemo finally started this evening. It took a few hours to get him hydrated before so it was around 5:00 p.m. before it got started. He is sleeping now and I am praying that he continues to sleep without getting sick to his stomach.
Sarah came to the hospital for a few hours this morning so I could run home and shower and do a little bit of laundry. Ronan was happy to see her and didn’t even put up a fuss when I left. She is so good with him and he loves her. It was nice to get out of the hospital for a few hours just to be at home. Felt a little sad and empty though. I try not to remember my old life too much anymore because it hurts so much. I am mostly just numb to everything and going through the motions. It’s all I can do right now. I am trying to come up with a way to make this whole isolation thing easier on everybody. I worry about Liam and Quinn a lot. I am thinking I can set up Skype and do things like help with them with their homework, etc…. I miss doing normal things like that with them and I worry that they are going to suffer. They are at an age where they are going to remember this time in their life and I am trying to figure out how we can make this into something that makes them stronger little men. Woody took Liam and Quinn to the Suns basketball game tonight with their entire basketball team. They called me when it was over and they were on their way home. I heard Quinn tell Woody it was one of the best nights of his life. I am so glad they had such a good time, but hearing him say that felt like I had just been slapped in the face. Bittersweet. It was one of the best nights of his life, and I wasn’t there. Makes me sad. All the time.
My girlfriends keep telling me they are going to kidnap me soon to take me out for an unbirthday celebration. I love them all so much, but I honestly feel like burying myself in a hole and never coming out. Hospital depression maybe? Or maybe just sad because my baby has cancer. I know things with Ronan could not be going better, but I am the one who has to watch everyday as he suffers and goes through what he is going through. It is the hardest thing to see and watch; and all day long I push my fear and sadness away to be happy and strong for him. Nights get me, when he is asleep and I have nothing to do but sit with my thoughts and watch him sleep, praying that every little whimper he makes is not due to any pain he is feeling. I will have to watch him closely tonight. This round of chemo is nasty stuff. I’ve gotten so good at the “cancer lingo,” and knowing what exactly the side effects are. Words like, Vincristine, Doxorubicin, and Cyclophosphamide, roll off of my tongue with such ease as if I’ve known them entire life. They are now words that I will never forget, no matter how hard I try.
Alright, that is all for tonight. I am going to get out my own head before it’s too late and I can’t get my thoughts under control. G’nite, sweetest dreams to all of you.
Today is day 8. Every time Ronan starts his chemo treatments, his blood levels are supposed to drop after 7-14 days. Which means, less energy, his immune system is low, etc…. Nothing yet. I took him to the clinic yesterday and his blood levels were still good. He has been full of energy and has been running around non-stop. Let’s hope this continues. Woody and I can’t get over him and how great he looks, for being so sick. None of this makes sense at all. I am just taking this as another great sign that Ronan is going to beat this and pray we continue to sail right through this. For dealing with something so difficult, he has been a champion…. not acting like a sick kid at all.
We have been taking advantage of being at home and doing normal things. The boys’ have been playing together non-stop. The love my 3 boys have for one another is so powerful and moving. It’s helping us win this battle. Last night Ronan cuddled up in Quinn’s bed and fell asleep with him. I left him there all night and only got up a few times to check on him. He slept peacefully the whole night through and woke Quinn up around 6:30 this morning to play. Ronan was upset that the boys had to leave for school this morning but I kept him busy. We ran some errands and I even took him into Target. Shhhhh! Don’t tell Woody;) I took him in to grab a few things, the store was empty, and I didn’t let him sit in a shopping cart. Poor kid has been begging me to take him for weeks now. We were very careful and I sanitized his hands about every 5 minutes. It made his day. He just wants to do normal things, like we used to do. So we did<3 And we will continue to do things as “normal” as possible. I am getting used to the looks of pity when we go out into public and Ronan doesn’t want to wear his hat. It doesn’t seem to bother me as much anymore. Heck Ronan doesn’t even care or notice, so why should I??
As of now, Ronan’s surgery is scheduled for the end December. I have a nice little story about the exact date of his surgery. I was telling my new friend, Pam, who has the little girl, Victoria, who is a cancer survivor, when it is going to be. As soon as I told her, she got a little quiet and goes, “Oh my god. That is the date that Victoria’s surgery was.” Same surgeon, Dr. La Qualia and everything. Another one of those good signs that I’ve been seeing during through this entire journey. We both got goosebumps and I got teary eyed. So Christmas in New York it will be:) Just wish it were under different circumstances but we are going to make it the best Christmas ever. As my dear Karen keeps saying, it’s one step closer to Ronan’s wellness.
Our next round of Magic Medicine does not start until November 1st. Until then, if all goes well, we will just be making visits to the clinic twice a week and we will be home the rest of the time. There truly is no place like home. Tonight, we went for a walk down to the our neighbors house. Ronan ran the entire way, only turning back to catch the football we were throwing. We had a great walk with our friends and enjoyed the cooler weather. It was the perfect evening and I was so happy that we were all together as a family.
I fell asleep early tonight, cuddled up to Ronan. Only wish I could sleep the whole night through…. ended up waking up in a panic and now my mind will not be still. Too many unknowns and worries keep me up. How do you sleep when the baby right next to you has cancer?? I woke him up to tell him I love him a few minutes ago. I tell him that 100 times a day. None of this has gotten any easier, but it has become our new way of life. This is not a life I would wish on anyone, but it is our life now and we will make it as happy and beautiful as possible. To be any other way would not be fair to Ronan or the twins. I know how important consistency and security is in a childhood. Especially in little guys who are 7. They will remember most of what we are going through so we have to make sure we make this as positive of an experience as possible.
Woody came home tonight with his hair buzzed super short. So sweet and cute of him to do. Ronan loved it and kept wanting to feel the top of his head. His long eyelashes are starting to go, as well as his eyebrows. His eyelashes are still there, but they are not as thick as they used to be. It just makes him that much more beautiful. Every feature on that child is beyond perfection.
So, if you don’t hear from me this week it’s only because I am taking full advantage of my healthy baby and being home. This week has been spent playing catch up on all the things I am behind on from being at the hospital all last week. It is amazing how far behind I can get on things around here.
Sweet dreams, friends. ❤