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.

Bone scans results…. kind of.

We started off this morning with Ronan’s Audiology test. It went alright… but we were not able to complete the test due to Ronan’s lack of cooperation. He was able to get through some of it in which the Doctor played high frequency sounds and Ronan would put a dinosaur into a bucket when he heard the sound. He did pretty well, but the Doctor is suspecting Ronan has a bit of high-pitched hearing loss. He is not confirming anything as of now. We are supposed to go back Friday to see if we can finish up the test. I refuse to believe Ronan has hearing loss… I don’t know why because it is very common side effect after going through so much chemo. Actually, I do know why. It’s because Ronan is different and is going to overcome any obstacle that comes his way. So what if he didn’t put the dinosaur in the bucket the second the high-pitched sound came on. He’s tired, mad, and sick of people testing, poking, and prodding at him. I wouldn’t corporate either.

After the Audiology test, we headed over to check in for Ronan’s scans. While waiting, I noticed a little girl who looked familiar to me in the waiting room. I have heard about her since Ronan was diagnosed, but have never met her. I’ve been on her website though so I knew the little girl was Ava. I went up to her mom, Chrisie, and asked if she was Ava’s mom and she said she was. I introduced myself and she knew who I was because I had emailed her awhile back. I thanked her for helping me out with my questions and we were able to update each other on both of our kids. I met Ava’s Grandmother and her Dad as well. They look like the nicest family in the world. What Ava is going through is beyond heartbreaking but she seems like a very strong little girl. All of Ava’s treatments are done at Sloan Kettering, even though they live here. Ava was here for scans today so please keep her in your prayers as well. Here is her website if you would like to visit it: www.caringbridge.org/visit/avaholder. Ava’s Neuroblastoma has relapsed twice, but she is still here and still fighting hard. I will scream and very loud, “FUCK YOU CANCER!!!!!!” for Ava. Makes me so angry. I just wanted to wrap my arms around her entire family while they were waiting for Ava to come out of Anesthesia. I am so happy I had the pleasure of meeting them today. What are the odds really? They are never at PCH and just happened to be on the same day I was there with Ro. It was meant to be. I feel so blessed to have finally met them and sweet little Ava. She is a little spitfire just like Ro 🙂

As we waited for Dr. Maze to come and get us for Ronan’s Anesthesia, he fell asleep in my arms. I sat and watched him sleep so peacefully. I took that time to think about what a long way he has come since first being diagnosed. I found myself in a comfortable state of mind full of peace and quiet. I sat with him in the dark and prayed for his scans to come back with the results we are hoping to see. I felt a wave of warmth in my heart wash over me because I felt, once again, that Ronan is going to be o.k. He is going to beat this and go on to live a normal, happy, long life.

Dr. Maze arrived and we were taken back to the room where they were getting ready to do the bone marrow procedure. He let me hold Ronan as he always does while he gave him the Propofol to go to sleep. I held him and watched him get sleepy and listened to him cry out, “Mama, mama, mama,” for me. He doesn’t like the way the sleepy medicine makes him feel. I told him I loved him and would see him soon and set him down on the bed. I gathered up my things, took one look back at my baby, and Dr. Maze yelled at me to go and eat something. I had to laugh to myself because at the beginning of all of this, Dr. Maze was so proper and reassuring. Now he knows me so well and knows that  I am so used to all of this that he is comfortable barking orders at me to eat something. Gave me just the chuckle I needed to get out of there without even tearing up like I normally do.  Woody met me at the cafeteria and I managed to eat a little salad, but pretty much just sucked down a giant Coke instead. An appetite is something that I am still having a hard time with, especially on scan days.

After Woody left, I sat in the waiting room and waited for Dr. Maze to come and get me. I tore through the piles of bills that I needed to get paid and the next thing I knew, it was time to get Ro. He woke up groggy and grumpy like he always does. Dr. Maze went back and looked at the scans for me and came back telling me as much as he could. Our Doctor, Dr. Eshun, is in New York City and will not be back to read the results for us until next week. Dr. Wood, who has followed Ronan since the beginning is here and I sent Dr. Maze a text asking him to please have Dr. Wood call us to go over the scans because next week is way too long to wait. I got a phone call from “A” tonight instead. It was hard for me to talk to her, as I had Ronan screaming in the background and had to run outside to even hear her talk. She said she could go over the results from the bone marrow and bone scan for me in a very limited way. As she put it, in her medical terms…. she told me that there was “No focal discreet abnormalities in the bones anymore.” Um… what?? She may as well have been speaking another language. I couldn’t think of what questions to ask, as I was distracted by Ronan and my nerves were a wreck. I said to her, “I have no idea what that means, but is that a good thing?” She said indeed it was a very good thing and that is just what they would want to see. She told me Dr. Wood would call us tomorrow or Friday to go over what exactly this means and to discuss things further in detail after they do the MRI, CT, Pet Scan tomorrow. Those scans will tell us in more detail what is going on now. All I know is “A” was not alarmed about anything and that alone will help me to sleep a little bit better tonight. I will let you all know the “formal” results when we get them, but as of now, there is nothing to be alarmed about. The treatment we are doing is working and that in itself is a huge victory in its own right.

We are all exhausted tonight and Ronan has another big day of scans tomorrow so I am going to try to get some sleep. Please continue to send your strength and love his way. His diagnoses has been beyond devastating to us, but the way he continues to beat all of the odds is beyond inspiring. He fills me with such hope and love every second of the day and it is the love that I have for him that will get all of us through this.

G’nite and sweetest dreams to all of you.

xoxo