Rocco in the City - Our NYC trip
A week later we met with her virtually. I don’t think I stopped crying that entire week. When we met with the NYC doctor virtually, she told us that although one of the lesions increased in size, she did not feel that it was due to malignant degeneration. She said it appeared to be growing because he is growing. The relief I felt after hearing this was immediate. I felt my whole body relax. I was so thankful. She explained being that “malignant degeneration” was written on the MRI report, she recommends us doing a follow up scan of his brain and spine in 8 weeks. She invited us to come to NYC to have her team of experts at MSK do the procedure and then she could meet with us after and go over the results the same day. So, that’s what we did.
We planned a trip for the end of October, but unfortunately Rocco got sick and we had to reschedule to November. My mom, my uncle, Rocco, and I flew to NYC earlier this week. The first day we arrived, we got a lay of the land and did a dry run to the hospital so we knew exactly where we needed to go for the procedure. We stopped in a nearby Catholic Church to pray, grabbed a slice of pizza, and checked into our hotel. Our close family friend stopped by for a quick visit, we went for a little walk, then called it a night since we needed to be up early the next morning. I felt pretty uneasy and anxious the entire evening.
Our arrival time at the hospital was 6:30am. Once we arrived, we were quickly taken back to a room where we met the sweetest nurse, Jane. Jane took Rocco’s vitals and got him all prepped. Rocco was stealing the hearts of all the nurses and pretty much everyone who passed by him. Once we met with the anesthesiologist, I started to feel a lot calmer. He answered all my questions with compassion and competence. Soon after that, we were taken to the procedure room. We walked there singing “The Wheels on the Bus” (one of Rocco’s favorite jams). He was smiling and waving the whole way and everyone we walked past gave a collective “awww.” Again, putting smiles on everyone’s face.
I stayed with him until he was out. It’s always hard to see, but I know he’s comforted by my touch and singing to him. After everything Rocco has been through and will go through, the least I can do is be a source of calm and comfort for him. This was my second time seeing him being put under, and not my last. Once he fell asleep I was escorted to the waiting room. I was told it would be a 2-hour procedure, so I was expecting them to call me back and tell me he was done around 9:45am.
9:45am rolled around and nothing. Nerves started to kick in again. After still not hearing anything by 10am, I asked the person at the front desk. He was so nice and could tell I was worried. He told me that the procedure start time was marked as 8:40am, so I could expect 2 hours from that time, which would be 10:40am.
At 10:40am, I was called back. Jane said he did amazing. I told her I was starting to get nervous because I was thinking he’d be done earlier. She told me that it took a while to actually get the procedure started due to some difficulty finding a good vein for the IV because of all the little satellite spots on his arm and his chunkiness. Rocco was so happy to see me and his Mimi. He was smiling, but I could tell he was definitely groggy. I gave Rocco a bottle and cuddled him. Jane took his vitals and determined he was good to go upstairs for the appointment with the doctor.
We gave Jane a big hug, thanked her for taking such good care of Rocco, and headed up to the 9th floor. There we waited for about an hour and a half. Rocco was mesmerized by the fish tank. There was also a play room that he thoroughly enjoyed, but he was still so sleepy from the anesthesia that he ended up taking a nap. Sitting in that waiting room was heavy for a few different reasons. I was hopeful for good results for Rocco because of what the doctor had told us in September during the virtual visit, but I was starting to let the “what if” thoughts take over a little. The waiting room was also heavy because once Rocco fell asleep, I took a moment to really look around and saw we were surrounded by very ill babies, children, teens, and their parents. Many had no hair, some had walkers, others were in wheelchairs, some were hooked up to machines or IVs, and a few had amputated limbs. It was a truly heartbreaking sight.
We were called back in to a room to meet with the doctor. She immediately told us his scans looked good and the lesion we were concerned about looked better! I felt like the weight of the world was lifted off my heart. I am so relieved and thankful.
She did a neurological exam on Rocco, asked me questions, answered mine, and reviewed the scans with me. Rocco was awake and getting fussy at this point, so my mom was a huge help in keeping him happy and distracted so I could talk with the doctor.
She said Rocco doesn’t need any other imaging or tests done unless he were to develop any neurological symptoms. She said it is best to continue with follow ups with his local neurologist, which we will do. She said she is happy to consult with Rocco’s neurologist and his team of doctors back home. She will be in Orlando this summer and will see him as a follow up while she’s in town. I am so unbelievably thankful.
Rocco is enrolled in her research registry, so before we left she told us they would need to draw blood for that. We went back to the waiting room for them to call us to get his blood sample. It was then that a young boy, maybe around 9 or 10 years old approached us with a basket of toys asking us if we’d like to take one for Rocco. This sweet boy was clearly sick with cancer. He was frail, with no hair, pale, and using a walker, yet was so thoughtful to be gifting little toys to others in the waiting room. This moment took my breath away. I picked out a little giraffe stuffed animal and let Rocco hold it. He put it in his mouth and started chomping away on it which made the little boy bust out laughing. I said “Can you tell he’s teething?” and the boy said “He’s so funny.” I wish I asked him his name, but regardless I’ll be praying for him.
They called us back to draw Rocco’s blood, which was not fun. Once that was done, they removed Rocco’s IV port, and we were good to go. By this time it was 3:30pm. It was a long, emotional day. We were exhausted and starving. My uncle picked us up, we walked to get sushi, then went back to the hotel. We left the next day, but not before enjoying a New York City bagel.
I am so proud of Rocco. He is so strong. I feel so honored to be his mom. I feel so incredibly relieved that all is okay with him. I will continue to pray that he remains asymptomatic and keeps thriving. I truly believe he makes the world a brighter place and leaves a mark on people’s hearts.
I am so thankful for Mike. He has been an absolute rock in all this and holds me together when I am falling apart. I also don’t know what I would have done without my mom and my uncle on this trip. It wasn’t an easy or fun trip. Having them there meant the world to us and helped tremendously. I am also so incredibly grateful for my Papi, who stayed with Mikey because Mike was out of town for work. I am so thankful for my in-laws as well, who watched Rocco before our trip so I didn’t have to send him in to daycare and risk him getting sick again, which allowed me to be able to work!
We feel very blessed with family and friends who nonstop pray for Rocco and check-in on us. I am in awe by how much love and support surrounds us and how many people are rooting for Rocco. Now, I am so excited to enjoy the holidays and cherish this special holiday season with my boys. God is so very good.
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