You must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

MRI, CT, and Pet scan results…. kind of

After what seemed like the longest day ever; we returned home around 7:30 tonight. Ronan insisted we stop at CPK for pizza so we met Woody for dinner. I ate my one meal of the day, Ronan didn’t eat a thing and ended up just making me hold him while I ate. As  soon as we got in the car I was almost instantly sick to my stomach. I told you I don’t do well with food anymore…. we got home and I threw up my entire dinner. Awesome. Ronan is so used to seeing me do this now he just looked at me and said, “I sorry Mama. Do you want your toothbrush?”  It was the sweetest, saddest thing ever. He then asked to be put in my bed and for me to go to sleep with him. That is precisely what I did. I curled up beside him and 5 minutes later we were both sound asleep. I feel like I’ve been hit by a bus and am physically  and mentally beat. Ronan woke up around 9:30 tonight asking for some pizza, carrots, apples, and whipped cream. Nice combo. What Ronan wants, Ronan gets. He ate all of the food that I got him and went back to sleep. We have another early day tomorrow at PCH trying to finish up his Audiology test and then going to the clinic for a possible platelet transfusion. When they drew his labs today, his platelet count was low. “A” wants them checked again tomorrow and told me he will more than likely need to get them.

After Dr. Maze came to get me when he was done with Ronan I returned to a very sleepy little boy. I sat quietly and let Ronan wake up on his own and Aubrey tracked down Dr. Wood for me so he would come down and go over the MRI,CT, and Pet scan results. The results are all preliminary results, but I’ll take them. Dr. Wood told me that the Neuroblastoma is still showing up in a few areas, which he expected. Ronan’s shoulder bones, his upper thighs, and his spine all seem to have some Neuroblastoma left in them. The activity has decreased immensely and he said for as much cancer as Ronan had in his body, in no way shape or form, did he expect it to be gone entirely. This is what the Stem Cell transplant/radiation/antibodies will do. Remember, Ronan had Neuroblastoma in every bone in his body; even his pinky fingers.  I asked Dr. Wood if he saw anything he was concerned with and he said not all, that Ronan is making great progress. I wish I could say a huge sigh of relief came over me today, but I am still left with a feeling of numbness and sadness. Ronan’s results are amazing and I am elated that his cancer is responding so well; but the bottom line is my beautiful baby boy has cancer and I just want it gone. Now. I know, I know…..this is not a sprint it is a marathon. We will get him there but for some reason today was a hard day for me. Harder than yesterday. As I said before, all of these results are preliminary and we will know much more next week after he does the MIBG scan. That is on February 10th. As of now, we are moving forward and preparing to go ahead with transplant.

I have not spoken to anyone on the phone tonight except my dear Fernanda. We talked about Ronan’s results and I listened to her as she told me how she took the time today to research what exactly needs to be done for isolation and she made out a list for me that she got from the internet of other Neuroblastoma moms. I mean really, Fernanda. Never in my life will I be able to thank you enough for all the things you are doing for me without me even having to ask. I am so thankful for you every second of the day. Fernanda’s list includes everything from scrubbing down our isolation room with a toothbrush (not even kidding), to making sure every item of clothing is bleached and sealed in a bag before it goes into the room. She told me to stop doing my laundry for the next two weeks and to leave it at my door so she can pick it up and I won’t have to waste time on that bullshit so I can fully be focused on Liam, Quinn, and Woody. I said to her, “Well what if I like doing laundry?” She then told me that the only reason I like doing laundry is because it gives me a sense of normalcy and nothing in my life is normal at the moment so to knock it off. I had to laugh as this is so true. Laundry makes me happy because it is the one thing that I freaking have control over in my life and it is something that will always be consistent and never change. It’s true; I absolutely love laundry:)

I am trying to wrap my head around giving up complete control of my life once this isolation thing starts. Just the thought of this gives me such anxiety. I think I need to make a list of the things I can control, just to make myself feel a little bit better. I have no idea what that even will consist of because my “normal” life is pretty much going to be gone. All I have to say to this right now is HOLY FUCKING SHIT. I still cannot believe any of this is real. Shouldn’t this be a movie that I am watching in the theaters or something?? This cannot be real life, this cannot be my life or Ronan’s life. I will never stop shaking my head and the tears will never stop. This is all too much. What I wouldn’t give to complain about the things I used to complain about like having to take Ronan to the grocery store because he would NEVER sit in the cart and would insist on running up and down the aisles which would drive me crazy. Or how I would feel so overwhelmed with my daily “to do” lists….. what a joke. Nothing in my old life was anything to ever complain about.  I would give anything to have my worries of the day consist of what I was going to make for dinner and how I was going to squeeze in Ronan’s nap for the day because of all of the “things” we had to do. My past life all seems make believe, like it was never really real and it was all just a dream. I could sit and cry just thinking of all the things I was ungrateful for and how much I miss what we used to have. That won’t do me any good tonight though. Tonight I am not going to sit and cry myself to sleep because today was a day full of good news. I have to remind myself that on days like today, I am not allowed to be sad. Ronan is working too hard so I will take tonight to be thankful for the progress he is making and be proud of what a strong little boy he is. He is the bravest soul that has ever existed.

Tonight, while we were waiting for my car from the valet, I caught a glimpse of myself holding Ronan in the doors to the clinic. It was another one of my out of body experiences as I looked at my refection and almost didn’t recognize who this person was with her baby boy draped over her body. It was me but I felt as though it wasn’t. It took my breath away for a second and I almost felt like I was going to faint. Had nothing to do with the fact that I had not eaten all day I’m sure;) It had everything to do with the fact that I will never get used to the fact that I am now a mom to a child with cancer. I will never accept this and I will never come to terms with it. This is just a moment in time, a sick and twisted way of Ronan having to prove how much he deserves to be on this earth. It’s my way of proving how much I love my son by fighting as hard as I can fight to keep him here and surround him with every ounce of love I have in my body.

God, am I even making sense tonight? I feel delirious and all fired up at the same time. One day at a time, one step closer to Ronan’s wellness, right Auntie Karen:):) She always tells me this…. love and miss you so much. Hope you are having fun in Cali:) Thinking of you there makes me smile because I can picture all of the laughing and fun you are having. That makes me happy and gives me peace tonight. You know what else gives me peace?? All of you. When I get pissed at the world, I think of all of you beautiful souls out there who love Ronan so much and who have faith that his journey is meant for a very special reason. Having you all believe in him and love him so much means everything to me. So thank you a million times over. You all give me strength when I need it most.

Ahhh….. my New York Miss Macy is calling me right now. Perfect timing as she gives me the giggles like no other and I can’t think of a better way to end the night. I am beyond blessed to have the most amazing friends. Love you all! Sweet dreams!!

xoxo

This picture says everything tonight. My favorite animal is a Giraffe. Ronan’s is a Zebra. Keep on holding on baby. We will get you through this.