We arrived at our hospital room at around 9:30pm. We were all exhausted, Grayson especially, it was way past his bedtime. Our night wasn’t over, yet. Grayson needed an IV placed, which ended up being an absolute nightmare. Our nurse tried three different places, no luck. A more seasoned nurse, who always has success couldn’t find a vein so she didn’t even try. The transport nurse was called in to try. She tried three different places, no luck. Watching Grayson scream and cry, while swaddled in a blanket to keep him as still as possible (because he’s so strong, the nurses couldn’t hold him still – yay for momma’s milk!) was devastating to watch. We knew he needed an IV placement for fluids, because he was NPO (nothing by mouth) due to a brain MRI scheduled for Monday. We were running out of options on who we could ask to place the IV. The PICU nurses were our last resort. They arrived in our room and by this time Grayson was so tired from fighting everyone else, he didn’t have any fight left in him and the PICU nurses successfully placed his IV. Whew, that was over and after all of that, Grayson earned himself the label of being a “hard poke.” We got settled into bed and went to sleep.
Monday morning arrived and so did all of the medical students, Residents, Fellows and Staff Doctors in our room at 8:30. This was the first time we met Grayson’s neurologist. We explained his symptoms, and showed her the video we had of his eye movements. She examined him and was able to witness his eye movements and tremors. She told us that she had an idea of what it might be, but she wanted to wait until his brain MRI results before discussing it with us.
Grayson’s brain MRI wasn’t scheduled until 2pm, which meant no bottles, breakfast or lunch; he hadn’t eaten since 6:30 the night before when we were sitting in the ER exam room. Grayson loves food, so not being able to feed him was hard on us as parents. We did the best we could to keep him entertained, but he was a grumpy little guy. Finally, the sedation team arrived and he was taken away for his MRI.
We waited for about an hour for his MRI to be completed and we met Grayson in the recovery room. He woke up happy to see us and obviously hungry. His neurologist stopped by the recovery room and said the preliminary results looked good. There didn’t appear to be a mass or anything else to be concerned about with his brain, but she needed the radiologist to confirm the MRI results. This was wonderful news, we were so relieved. We had convinced ourselves that there had to be something wrong with his brain, because what else could be causing the tremors and eye movements?
We headed back to our room, excited to get Grayson some food. He was starving. Before feeding him, I checked with the nurse that it was ok to feed him and she said that he was still NPO. No!!!!!! This poor baby had to eat. The nurse told us that an ultrasound had been scheduled of his abdomen and that was the reason he was still NPO. It was about 4pm and the ultrasound was for 6pm and wasn’t expected to take too long. Two hours. We just needed to keep him happy for two more hours. Grayson and I went on the hunt for some toys. We found a car that I could push him in; so we went out and explored the pediatric inpatient unit for a little bit.
Back in our room his neurologist stopped by and confirmed the final results from the MRI. No mass or anything to be concerned about. His brain appeared perfect. She then shared with us what she thought might be wrong with Grayson; Opsoclonus-Myoclonus (dancing eyes-dancing feet – OMS for short). Mike and I hadn’t heard of this before; so we just shook our heads up and down and said, “ok.” The symptoms she was describing of this dancing eyes-dancing feet disease sounded exactly like what Grayson had. What we didn’t understand was the severity of the disease and how rare it was.
She also shared with us that 50% of the time that Opsoclonus-Myoclonus is diagnosed, Neuroblastoma is also diagnosed. I felt like I had been punched in the gut. I didn’t know too much about Neuroblastoma, but I knew enough about it to know that it was a form of cancer. So, we had just been told that our son may have a rare neurological disease (OMS affects one in a million people) plus cancer. She went on to explain that the reason she ordered the ultrasound was to look for a mass in his abdomen. That was a lot for us to take in, but we needed answers so we could begin to fight whatever was wrong with Grayson. Before she could make a diagnosis of OMS she wanted us to see ophthalmology to rule out anything physically wrong with his eyes; so an appointment was scheduled for 8:30 am on Tuesday with the U’s ophthalmology department
6pm came and went. 6:30pm came and went. Still no ultrasound. In the less than 24 hours that we had been in the hospital I learned that waiting is all you do. I’m not a patient person when it comes to my kids, so waiting on tests, waiting on results, waiting on doctors, waiting, waiting waiting…is not something I’m happy about. At 7pm I tell the nurse that ultrasound had ten more minutes to come get Grayson, otherwise I was going to give him food. It had been over 24 hours since he had eaten. The nurse checked with the ultrasound department to see where they were and they said they’d be there in fifteen minutes. They lied. They didn’t get Grayson until 7:30. Poor buddy was starving and not happy. Grayson arrived back from his ultrasound and I had a smorgasbord of food waiting for him. He was so hungry that I couldn’t get the food fast enough to his mouth, so he put his face in the baby food container. He ate until his little belly was full, then went to bed.
Tuesday morning arrived and we were off to see the ophthalmologists. We explained Grayson’s symptoms, showed our video of him and told them what his neurologist was thinking may be wrong with Grayson. A standard eye exam was done and it was confirmed that there was nothing wrong with his eyes, physically or visually, and they too ruled out Nystagmus.
We headed back to our room, to wait. We didn’t have any further testing or appointments scheduled that day; so we were just waiting for the results from the ultrasound and to speak with his neurologist about what else she would like to do for testing. Just before lunch we received the ultrasound results which showed no mass in his abdomen. Whew, we dodged that bullet, or so we thought. Since there wasn’t much going on, Mike left the hospital to go home for a bit leaving Grayson and I to hang out in the playroom. We had been in the playroom for a little while when his neurologist found us.
She had spoken to the ophthalmologist who confirmed that she was going down the right path of diagnosing Grayson with OMS. She told me that since Grayson also was having balance issues, that his complete diagnosis was Opsoclonus (dancing eyes) Myoclonus (dancing feet) Ataxia (poor coordination) or OMAS as I usually refer to it as. She then said that she was going to refer us to oncology to confirm if Neuroblastoma was present. I did’t understand. The ultrasound came back with no mass present. She explained that another MRI would be needed, because the imaging is different and can pick up things an ultrasound can’t.
March 22, 2016 our lives changed forever. It was confirmed that our son had a rare neurological disorder, in which there is no cure for, and that he could have cancer too. Hearing this news by myself was crushing. I didn’t blame Mike for not being there, but I sure wish he had been. I called him right away and explained what the neurologist told me and then I texted my good friend asking her is she had heard of the oncologist we had been referred to. Her response was, “call me…”
My friend knew what I was going thru. She and her husband had battled leukemia with their daughter a couple years back so she knew the doctors, understood the testing involved and was able to calm me down from my freak out mode. She’s such a positive person and looks for the silver lining in things. She tried to reassure me that Grayson was going to fall in the other 50% of kids who have OMAS and don’t have Neuroblastoma. I hoped she was right.
Mike got back to the hospital and I had had enough. I wanted to go home. There was no reason keeping us inpatient if no further testing was going to be done in the next day or so. I talked to our nurse about the possibility of leaving; so she sent a message to the doctor. A little while later Grayson’s neurologist arrived and along with her the oncologist. Oh crap, this is real. We’re dealing with some serious stuff. I was scared. I felt sick. I was tired. I wanted to go home. They both explained what the plan was for the next two weeks. Next week (the week of March 28th) we were to come to the hospital, as outpatient, for an MRI of his neck, abdomen and pelvis. Then the following week (the week of April 4th) we’d come back for an MIBG scan. Once these tests were done we’d know more if Neuroblastoma was a concern or not.
Mike, Grayson and myself left the hospital excited to sleep in our own beds, eat food other than hospital food and be with Landon and Lillian. We were really missing them. Before leaving, the oncologist said that she’d call on Wednesday with the date/time of his MRI.
Wednesday morning arrived and we were anxiously waiting to hear from the oncologist. It was 2pm and still nothing. The oncologist made the mistake of giving me her business card. I had her direct number, so I called it. About ten minutes later she called me back. She told me that she was having problems getting his MRI scheduled for the following week and that the first one she could get us in for was on April 4th. She did’t want to wait that long so she said the dreaded words, “inpatient.” She explained that if she admitted us, that we’d be able to get the testing we needed more quickly. She asked us if we could come back to the hospital that night.
Nooooo!!!! I didn’t want to go back. We had just got home and we needed more time to rest from the last stay. We didn’t really have a choice, since we were looking for Neuroblastoma we couldn’t wait. We needed to back to the hospital so we could confirm that Grayson wasn’t going to face cancer on top of the OMAS.