I wish Neuroblastoma was an April Fools’ Joke

Last night, I left Sloan beyond beat due to our traumatic day. Woody came and met me and we swapped places so I could sleep at the RMH and spend a little time with Quinn. As soon as Quinn and I stepped outside, we were hit by all the rain. I wasn’t prepared at all… ballet flats on, no coat, no umbrella, etc….so the two of us held hands and we ran as fast as we could back “home.” We splashed in every puddle along the way, laughing the entire time. It was some much-needed simple fun. As soon as we arrived back to the RMH, we ran into my new friend who lives there, Doriet and her little girl, Ester. Doriet got a big kick out of how soaked we were and hurried us up to our room to get warm. I am just starting to get to know her and LOVE her. When I told her a few days ago that Ronan’s bone marrow was positive again she looked at me and goes, “So what. That doesn’t mean anything.” She is full of tough love which works for me. Seems that I respond well to her kick ass attitude and she is the pillar of strength. An amazing woman, mama, and wife to say the least.

Quinn and I warmed up and snuggled in bed together and slept peacefully all night as we listened to the rain outside. I didn’t wake up until my phone went off at 10 a.m. EST with a text from my Mr. Sparkly Eyes telling me he hoped today was a better day. I thought to myself… It HAS to be. I don’t think I could handle two yesterdays in a row. On our way to Sloan, we stopped at Delizia’s so Quinny could get a slice of pizza. He must have told me he loved me and thanked me a half a dozen times while we were there. Such a little love bug. I’m going to have a hard time when he leaves on Sunday. Once we arrived at the hospital, I found a sleepy Ronan and Daddy cuddled in bed together. I quietly woke Woody up to let him know he could leave, but he ended up staying for a few hours and working from the hospital. Quinn stayed in the playroom on 9 by himself and then met us on 2 so he could see Ronan at Radiation. It was the highlight of my day; watching my two boys laugh and play for the 20 minutes that we were waiting. Lots of laughs and giggles from them both. After RT, Woody and Quinn left and I stayed at Sloan. Ronan’s mood is so much better today. We have been playing a ton and he even let me hogtie him up while we played Cowboys and Indians. He is now quietly laying down and watching a movie. I think I wore him out! We are waiting for Woody and Quinn to get here and I asked the nurse if she could block off the playroom for us so Quinn could play with Ronan for a bit and we could have dinner as a family. She agreed to do so. Very nice of her as it’s the only way Quinn can be on the floor with Ronan for an hour or so. Better than nothing.

This weekend will be spent here, inpatient. Dr. Kushner came to see us today and said Ronan’s counts probably won’t come up until Monday or Tuesday. Yowzer. I am trying to make best of this and luckily, this hospital is really good about keeping the kids entertained. Lots of arts and crafts, funny clowns, the Candy Cart, etc….. I am just thankful that Ronan looks a million times better and he finally has his giggle back. It’s really hard to go a day without it. He is happy for the most part, although he asks me all the time when he can go back to Phoenix and says it’s not fair and he misses his home. This kills me. I just keep telling him that we will go home as soon as we get him better and that we have to be strong, keep fighting, and never give up.

Today, I was showing him his little lunch box with his name embroidered on it and I was spelling out the letters of his name for him. He looked at me and goes, ” I like it, but why doesn’t it say Rockstar Ronan on it?? I burst out laughing. Cutest thing ever. He spent the majority of the day playing April Fools jokes on me. He would tell me things like he had to go to the bathroom, and I would get him up to go and then we would yell out, “April Fools!” He must have done this a dozen times today. So glad my little prankster is up to his old tricks.

Ronan and I just got back to our room from our Friday Night Pizza Party. Woody and Quinn brought us pizza and we sat in the playroom and ate together as a family. Ronan was in a very playful mood and he is now tucked into bed watching the new “Clone Wars.” I’m going to cuddle up to him as he is getting sleepy. I am planning on slipping out soon and Woody will stay the night again. So thankful for that… I sleep horribly at the hospital and I really want to spend as much time as I can with Quinn before he leaves. I hope you all have a lovely weekend. Thanks for checking in!

xoxo

Scans are done… now we wait

We are home finally from our long evening of scans. Ronan started at 4:30 this evening and was not finished until about 8:00 tonight. Dr. Maze was there, as always, to give Ronan his anesthesia. He stayed the entire time, even though I was told that he would more than likely not be there when Ronan woke up. He was, and that meant the world to us. He is truly a doctor that goes above and beyond. The world would be such a better place with more people like him in it. He takes the time to go over everything with us… to make sure we are being taken care of, listens to our question and concerns and to give us advice. We will forever be grateful for him. He has made a huge difference in this experience for us. Ronan trusts him and truly loves him. He is only really like this with Dr. Maze and our wonderful nurse, Sharon. Those are the two people Ronan trusts the most… and those are the two people I trust the most. It makes a big difference when you can look into the eyes of the person who is taking care of your child and see that they truly have a passion and love for what they are doing. I see it every time I look into the eyes of the both of them. It brings me a lot of comfort and somehow makes me feel like everything is going to be alright.

Ronan woke up really grumpy from the anesthesia. He got a little sick to his stomach and slept the entire ride home. He is asleep now and I am hoping he stays that way for the rest of the night. Poor baby. He had a hard day and spent the better part of it being upset that we were at the hospital and not at home. It’s days like today that I feel so heartbroken for him. I just want him better and healthy so he can go back to his life before all of this. I did my best and was strong for him all day long… I spent the entire time at the hospital talking him through everything and trying to distract him. He just wanted to be home with his brothers. I don’t blame him; I did too.

I got to spend some time with Tricia and Marisa tonight. They both came to the hospital so I wouldn’t have to wait alone. It was nice to sit and laugh with them. They know when I need a good distraction and waiting for Ro to come out of anesthesia is always hard for me. Thanks girls for sitting with me tonight and thanks Marisa for checking my blood sugar levels;)

This weekend we are going to lay low and enjoy our family time together. Ronan will start round 3 of his “Magic Medicine” on Monday and I just found out that we will have to be admitted into the hospital for his treatment. The dose is stronger so they will need to monitor him all week. Not excited about that but like always, we will make the best of the situation.

We should hear back about Ronan’s scans some time tomorrow. Praying for good news and praying hard. Sweet dreams my friends.