We arrived back at hotel UIHC late Wednesday evening. We went thru the horrible ordeal of placing an IV in Grayson and after numerous tries it was in. Our oncologist scheduled us for a CT scan on Thursday morning, which meant Grayson was NPO; again. Ugh. At least this time his test was scheduled for mid-morning; so we wouldn’t have to starve him all day.
Thursday morning arrived and so did the need for the oral contrast for the upcoming CT scan. I have no idea how much he needed, but it was a lot. Our nurse’s job was to make sure he got it all done within an hour. First, we tried getting him to take the solution out of a bottle; no luck. We tried a sippy cup; no luck. We ended up forcing it down him, which we had wanted to avoid. Our nurse did all the hard work. She’d come in and give him a few syringes full of the contrast, leave and come back fifteen minutes later and repeat the process. We did this over and over again and managed to get all the contrast in him by the end of the hour. I hated forcing the contrast down him, but it was a necessity.
We headed over to radiology and handed the care of our son over to the lovely ladies of the sedation team. Watching Grayson get sedated is not easy for this momma. The “sleepy medicine” went into his IV and then it was only a matter of moments before his eyes got heavy, and he quietly drifted off to sleep with the sounds of the pulse ox & heart rate monitors beeping in the background. The sedation team wheeled him off to the CT scan and Mike & I went and waited for the test to be done.
Unlike the MRI, the CT scan only took a matter of minutes. It seemed like we had just sat down and pulled out our phones to check email and reply to texts and Grayson was done with his scan. We followed the sedation team to recovery and watched him slowly come out of his sleep. His vitals were checked and we were cleared to head back to our room.
We hung out in our room, and waited for the results. We were able to give Grayson some food and drink; so we ordered him lunch. Mike & I weren’t hungry, our stomach’s were in knots, so we skipped lunch. I contacted my mom to update her on the happenings of the day and to confirm that she was able to get Landon & Lillian from daycare and bring them down to the hospital. She said she’d be at the hospital around 4pm.
Around 4pm we had a knock on our door and it was our oncologist, our nurse and a sweet lady from child life. Our oncologist said that she had the results from the CT scan and wanted to talk to us about the results. Time stopped, my stomach dropped and I held my breath. I knew what she was going to tell us. The child life lady stayed with Grayson in our room and Mike & I followed our oncologist to another room. Crap, my mom would be arriving at the hospital any time with Landon & Lillian. I needed to tell her to hang tight while we talked to the doctor. I quickly texted her to let her know we were about to find out the results of the CT scan and to hang out outside of the inpatient unit.
Everything was happening all at the same time. My other kids just arrived at the hospital and were wanting to see their mommy & daddy. Mike & I were being led to a room (which I’ve named the “bad news room”) to be told that our youngest child had something wrong with him. Walking to the “bad news room,” was strange. I could see people around me moving and going about their business, but it was as if they were moving a mile a minute and I was crawling at a snails pace; it was the longest walk of my life.
We entered the “bad news room,” and took our seats. The room had a large table with chairs all around it, a projector screen and a computer. Mike and I took sat next to each other holding hands, our nurse sat a few chairs down from Mike and our oncologist and someone we hadn’t met before sat across from us. The unfamiliar person introduced himself, and it turned out he was a pediatric surgeon. Our oncologist started out by saying that a mass was found on Grayson’s right side, just above his kidney. The surgeon pulled up the CT scan and pointed it out to us. “Umm…I don’t see a single thing,” I thought. Mike must not have seen anything either, because he asked for the surgeon to point it out it again. “Ok, whatever you say,” I thought. Our oncologist went on to say that the mass was most likely Neuroblastoma, but additional testing would be needed to confirm. This was the point that I no longer heard what was being said. I could hear the doctor’s voices, I saw their mouth’s moving, but the only thing I heard was, “blah, blah, blah…”
The worst meeting in my entire life ended and we headed back to our room. The child life lady had rocked Grayson to sleep. He looked so peaceful in her arms, I couldn’t believe that this little baby was most likely going to be battling cancer. I texted my mom to let her know that we had finished our meeting with the doctors and Mike and I went to go meet her and Landon & Lillian. Landon & Lillian were so excited to see us. I tried my best to hide the fact that I had just been given the worst news of my entire life. We headed back to our hospital room and on our way back I filled my mom in on what we had just learned.
We had promised Landon & Lillian that we’d have dinner together; so a couple different volunteers from child life came to our hospital room to stay with Grayson while we went to the hospital cafeteria. I don’t remember too much about dinner. Landon & Lillian were their usual goofy selves, they had no idea what was going through my head. I didn’t want them to. I had to be strong for them, I didn’t want them to know I was scared. They needed to feel safe and secure, because their world was going to change.
Dinner was over and we headed back to our room. Grayson was up and happy to see us. Landon & Lillian played with Grayson for a little bit, and before we knew it was time to take them back to my parents house. Lillian didn’t want to go, she wanted to stay with her “baby Grayson,” and daddy. I explained to her that she couldn’t but that Grandma Jody was looking forward to having her spend the night. She reluctantly left the hospital room. She cried from the moment we walked out of the room and she was still crying when I put her in her car seat. I told her that it was ok to cry, that it meant that she cared a lot for Grayson. Through a tear soaked face, she nodded her head up and down and said, “ok.”
I hopped into the driver’s seat and completely lost it. Tears flooded my eyes and wouldn’t stop. Thankfully, Landon & Lillian couldn’t see me. Lillian was still crying and she continued to cry, as did I, as we pulled out of the parking ramp and headed down Hawkins drive and onto Melrose Ave. I have no idea how Lillian knew I was crying, but somehow she did. I heard her sweet voice ask, “Mom, are you still crying?” I lied and told her no, I wasn’t. She said, “well I am.” I assured her that it was ok that she was still crying.
I dropped Landon & Lillian off at my parents and headed back to Iowa City. The drive back to the hospital gave me some time to think about what we were just told. I couldn’t believe it, the news hadn’t sunk in (and wouldn’t for a few days). Just a couple days prior we were told that Grayson had a rare neurological disease, and now we were told that he had a mass of some kind. In less than a week, our boring life that I often complained about, had been turned upside down and inside out.