We arrived at Sloan bright and early to start our plan for Ronan. Once again, you can never really make a plan with all of this because, as of now, our plan has changed. We headed back to Dr. Modak’s office and as soon as we walked in, I looked at him and told him Ronan’s arm is worse and the pain is unbearable. I slowly pulled Ronan’s little arm out of his shirt to show Dr. Modak how swollen it looks now. He looked like he was going to be sick and was completely taken aback. This man is a doctor, and to see that look on his face was upsetting, to say the least. We talked with him and he decided we needed to hold off on the NK cell trial and get Ronan’s pain under control. He sent us down for an X-ray because he was concerned Ronan may have a fracture due to how little he is using his arm. The X-ray came back showing a lot of swelling but no fracture. Dr. Modak told us what he felt was the best course of action now: to start radiating Ronan’s right shoulder today and admit us to begin his high-dose chemotherapy. He said we could go home and do these things, and Woody and I both said no way. We wanted to start ASAP. Dr. Modak made a few phone calls, and now we sit and wait to start Ronan’s radiation.
Woody looked at me in the waiting room with tears welling up in his eyes. My turn to take over being strong for a while. I looked at him and said, “What are you doing? Knock it off.” He replied that he was upset because Ronan is in pain. I told him I was too, but that’s why we’re here. We’re not fucking around. We’re not waiting until Monday. We’re not being put off. We are going to take care of this now so we can get back on track. We are in New York City, for crying out loud, and we are not wasting any more time. I told you I feel strong in this city. Today I’m not sad. Today I am determined and strong. I know we are in the best place possible, and Dr. Modak knows what is best. To say I love that man is an understatement. He is brilliant, smart, caring, and knows what is best for our son. Between him and Dr. Kushner, Ronan could not be in better hands. Knowing this gives me strength too.
After another grueling, long day, we are finally settled in our room for the night. Today was full of dealing with Ronan’s emotions because he is beyond mad that we have to be at the hospital and not out romping the streets of NYC. We decided to check in until Sunday or Monday so we could start Ronan’s high-dose chemo tomorrow. Dr. Modak got us started on Ronan’s first session of radiation tonight.
I cannot tell you how proud I am of my son. We went back to the room and Ronan was so upset and scared about the big table he was going to have to lie on. It took me 20 minutes, with the three technicians ever so patiently waiting, to get Ronan calmed down. He was crying and shaking. I sat and talked him through it. I told him exactly what they were going to do, which was nothing scary at all. They were just going to take some pictures of him, but everyone would have to leave the room, including me. He was not happy at all, but after about 20 minutes I got him to lie down in his little body mold that we had done earlier in the day. I looked him in the eyes and told him he could do this without his sleepy medicine and that I would be right back. He screamed for me as I left, but the techs gently secured him so he wouldn’t fall, and they stepped out to begin the radiation. I watched Ronan on three different cameras and was able to talk to him the entire time over the speaker system. I watched as my baby held as still as he possibly could, his little lip quivering, being the bravest boy he could be. At one point, I looked over at the tech, tears streaming down my face, and told her this was beyond fucked up. Because it was. It is probably one of the hardest things I have ever had to watch in my life. Not because the radiation was painful — it isn’t — but because watching Ro on a monitor receiving radiation as cancer eats away at his little body was almost too much to handle. I did my best to keep talking him through it. The whole thing took about 15 minutes, but it felt like a lifetime. Nobody could believe my little guy held so still without anesthesia. Everyone kept saying how amazing it was that a three-and-a-half-year-old could do that. I could not have been more proud.
After we returned to our room, Woody followed shortly after. He had missed the radiation because he was collecting our things from the Ronald McDonald House. He asked how it went and I quietly said fine, but soon ended up in his arms crying like a baby. He held me tight for a few minutes and let me cry. I guess I’m not as strong as I was earlier today. Sometimes my little badass attitude can even trick me into thinking I can handle this, no problem. I have decided I am only human and can only endure so much. Tonight, in my husband’s arms, is exactly where I needed to be. We are so lucky to have each other.
Ronan will do 14 more days of radiation and will start a different high dose of chemo tomorrow, a five-day treatment. Here we go again — another little detour on the road to getting Ronan well. What else do you have for us, world? I am trying my hardest, but this is getting beyond exhausting. I just want my baby better already.
After speaking with the orthopedic doctors, they found that Ronan has a lytic bone lesion in his right shoulder. It basically means the bone is becoming hollow. I am telling myself it sounds scarier than it is, and that is true. It is something that can heal because Ronan is young and his bone can regenerate. It will take radiation to address the problem. Radiation is very effective in neuroblastoma, so we have all the faith in the world. They want Ronan to be careful with his arm so he does not end up with a fracture, and they say the radiation should make the pain disappear in a few days. I am crossing all my fingers and toes. I cannot stand seeing him like this.
That is all the update I can manage tonight. I am beyond tired but wanted to let you all know what is happening. Please continue to send our little guy all your love and prayers. He needs them so badly. Sweet dreams, friends.
xoxo
I would like to say a big FUCK YOU CANCER for doing this to my beautiful baby boy. I hate you very, very, much.
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