This chemo is going to be rough. This is the stuff that causes major vomiting… and a few other side effects that we will PRAY hard, do not happen to Ronan. Hearing loss is a big one. High pitch hearing loss to be exact which I can absolutely live with, if it means keeping him alive. I am hoping and praying that Ronan tolerates all of this well, without a hitch. If he can get though these 4 days, this baby can get through anything. Our poor roommate next to us. He is an older boy, feeding tube in his nose, his parents are nowhere in sight… working I’m sure. Every once in a while I hear him on the phone, crying about how he can’t eat. Poor sweet boy. As awful as all of this is, I am so thankful that I am not a working mom and can devote all of my time to taking care of Ronan. We are so fortunate for being in such an awful situation. I can’t imagine having to leave Ronan in the hands of others to go and work. Thank god for Woody, I thank god for him everyday of my life.
Today has been great so far. We spent the morning home, getting ready for our week here. I have the laundry all done, house all clean. Niki stopped by to bring me coffee and Ronan actually came out of my room and played with her for a bit. We headed over to the clinic to have Ronan’s counts checked to make sure he was good to go to start this round of chemo. Ro was very excited about seeing our nurse, Sharon and followed her around the clinic while we were there. We didn’t have to wait long to get a room which was nice. We got checked in very easily and fast. Once we got up here we played in the playroom for awhile. Ronan was full of energy. He is sleeping now.. he didn’t nap today and is taking a late nap. They are going to start his first dose of chemo soon. I am anxious to get it started asap. The sooner we get it over with, the better. Trish is going to come by and bring me dinner and Woody is going to pop in as well.
We are in the same exact room that we were in when we were first admitted to the Oncology floor. It gave me major anxiety, walking in here. I tried to talk myself out of a panic attack but it didn’t work. I almost passed out on the spot. I am fine now.. I had Woody stay with Ronan so I could go downstairs and have a conversation with myself about how I need to suck this up and be strong for Ro. This whole floor brings back so many awful memories for me. It was a very hard 3 weeks when we were first here. I keep telling myself if I survived three weeks of this before, a week will be a piece of cake. Fucking cancer. I still can’t believe this is happening to our precious baby. It is a parents worse nightmare.
It’s going to be a long night. We are still waiting to start the chemo. It has to be double approved by the pharmacy before they can even deliver it, and the person who has to approve it, does not even get in until 9:00 p.m….. hopefully Ronan will stay asleep during the whole process and will not have any side effects. Trish came to visit and brought some homemade pumpkin soup. It was delicious. Woody also came by and brought CPK for all of us. While they were here, Dr. Maze stopped by to check in. It is always nice to see him, Ronan talks about him all the time and always asks me if he is going to carry him to sleep. So sweet and funny. We talked to Liam and Quinn tonight and it sounds like they are having a great time in Colorado. They got to spend some time with one of my best friends, Susie, who lives there. Wish I could have been there with them. Ronan talked to them both on the phone tonight. He misses them just as badly as I do. I hate that they we all have to be away from each other so much now. I will never stop being bitter about that.
Wish us luck tonight. Hopefully Ronan won’t even notice the chemo and will sleep right through all of it. Goodnight dear friends.
A childhood friend of mine, Mandy, in Washington supporting Ronan. He has angels everywhere.
A girl whom I’ve never met, Jennifer, posted this on my FB wall:
I’ve gone to the book store and seen a pink Bible. I’ve gone to the grocery store and seen pink reusable shopping bags. Pink yogurt lids. Pink ribbons on chip bags, ways to donate by buying certain items. I’ve seen pink on TV, heard it on the radio, seen it in my email and had it thrust in my face at almost every retailer. Don’t get me wrong, I want to take NOTHING from breast cancer sufferers and survivors. I know they worked hard to get where they are. I just want the same for the children that are also fighting. They need us too. Even more, their voices are smaller and their hearts are bigger.
Our weekend was a great one. Ronan is still refusing to act or look sick which makes this whole thing so much easier on us. I can tell his beautiful eyebrows are starting to go, but his full eyelashes are still hanging on. He looks so beautiful. On Friday we had family game night and just played at home. Ronan was of course thrilled to be spend the night with this big brothers. On Saturday Liam and Quinn had their basketball game. We were brave and let Ronan go. He was in heaven. His BFF Winston came to watch as well. It was their first mini reunion. They were both shy at first and wouldn’t even look at each other. Ronan stayed right on my lap. By the second half of the game, Ronan went to sit by his big brothers on the court and Winston soon followed. They sat by each other, talked, played, and laughed. I had to fight back the tears. It was hard to see but also beautiful to watch. Ronan took off his hat during the game and I could see other parents staring at him… also hard for me to see. I am fully aware of how sad our situation is but being out in public with him, seeing the look in other people’s eyes makes it so much more sad and real. I am so happy we took him out though, I think Woody is starting to realize that it is o.k. as long as we are making sure he washes his hands a lot and we don’t have him around people who are sick. We won’t be going to the grocery store or anything like that with him, but I think it is important for his well-being to get to do some of the same things he used to be able to do.
Saturday night we had Kay, Charlie, and Uncle Ron over to watch the ASU game. The Devils won, so it was a good night here. Liam and Quinn went home with Mimi and Papa because they had to get up early on Sunday to leave for the airport. They left for Colorado for the week for their Fall Break. Ronan was very upset about that, he was crying really hard as they got into the car. We finally got him settled down, but he is still talking about them and saying he wants them to come home. It’s better that they are gone and off doing something fun. Ronan and I have a very long week ahead of us. Last night Auntie Karen and Olivia came over to watch Ronan so Woody and I could go out for a bit. We were both tired but agreed we should take advantage of sneaking out for a bit. We didn’t do much… went for a drive and then stopped at Target. When we came home, Ronan was asleep so we hung out for a while and listened to Wood’s 45 record collection together. It was a very sweet date night. Simple but sweet.
Today, Ronan and I will head over to PCH around 1:00 to get checked in. We will be there for the entire week for Round 3 of his magic medicine. I am trying to have a positive attitude about it as far as staying the entire week in the hospital goes. It sucks that we can’t be at home… I know how much better Ronan does here. I will just have to keep his spirits up by bringing lots of things to read and we will have to go for a lot of walks. I don’t want his little legs to get weak again by sitting in a hospital bed all week.
Woody will be flying out to NYC on Thursday to meet with the doctors at Sloan Kettering. I am excited for him to get out there, talk to the doctors, and then I can be sure that the path we are choosing for Ronan, is the right path to take. New York is my absolute favorite city and I’m trying not to be sad about the reason Woody is going out there. It has always been our favorite place to visit together. Someday we will go back, as a family, and celebrate Ronan being healthy and cancer free.
Yesterday was the Susan G. Koman breast cancer walk in Phoenix. SO MUCH PINK! AMAZING! Pediatric Cancer awareness was last month. Did you see the sea of Yellow anywhere? Take a minute to think about that. Pediatric Cancer is the #1 killer of children of all childhood illnesses combined!