Not a lot to report today. The day was spent with Ronan waking up bright and early in pain; therefore, he was pissed at the world. We spent the majority of the day playing in his bed and figuring out the correct dosage of morphine for him since they decreased it last night after his little “falling asleep quickly” incident.
We did his second day of chemo and third day of radiation and are still inpatient at Sloan. They are thinking we will be able to be discharged tomorrow and just do the rest of his chemo outpatient. I’m not sure how they will have us handle his pain, though, since he is getting morphine through one of his Broviac lines. We’ll discuss that tomorrow with Dr. Modak.
Radiation was a little trickier today because Ronan was in the middle of sleeping when they came to take us down to the second floor. He was mad about being woken up and was crying when it was time for radiation to start. I got him to settle down, and our new friend Con, who has been doing Ronan’s radiation since day one, started the procedure. It only took a few minutes again, and soon we were back up in our room. Ronan fell asleep in the wheelchair on the ride up, and I transferred him into his bed.
While he was sleeping, I snuck out to go back to the RMH to shower, change, clean up our room, and repack our bags. I had a chance to talk to Tricia on my walk back to Sloan. That felt good. I told her the highlight of my day was getting to shave my legs. Ahhh… the little things now. They sure do mean a lot.
Ro hadn’t napped long while I was gone and fell back asleep right before I returned. He woke up a little while ago and was in a lot of pain again. I called the nurse in and asked if we could increase his morphine back to what it was yesterday — 0.3. The on-call doctor came in to find a very unhappy boy, so she agreed. He is back asleep now, and I am hoping he continues to sleep painlessly through the night.
I am beyond tired and glad that tomorrow is Monday. I love having Woody here with me, but I think he needs a distraction from everything going on. I’m so used to this hospital life; he really isn’t. Tomorrow will be good for him because he has a lot of work to catch up on. I’m kicking him out of here so he can go back to the RMH to work. I will tackle Ronan and everything we have going on. I know that if I really need Woody, he is only a few minutes away.
I am missing my friends and family back home a lot, but this time here with just the three of us has been good. It has given me some time with Woody that I’ve needed. We do really well in this city together. It is a special place for us; it’s where he brought me for my 30th birthday and we had the best time. So many good memories here. I know we are going to make more through all of this. Once we get Ronan back on track, we will take full advantage of being here and enjoying it with him. We just need to get this pain under control.
It’s the worst seeing him this way, as I’m sure I’ve told you all a thousand times before. Just like I’ve told Ronan a thousand times since his diagnosis, how sorry I am. I found myself saying it over and over today as he cried about his little arm. I’m so sorry, Ro baby. I wish this were me and not you. I wish I could feel the pain in my arm instead of you. I feel it in my heart every second of the day, though. I am never without your pain, and I wouldn’t have it any other way. I will hurt every second of the day with you until you are better.
That’s all for tonight, my lovely friends. Thank you for checking in on us. Sweetest dreams.
xoxo
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