Starting point #1 :
In September 2015, Greg began vomiting randomly. He would vomit a few times a week but suffered no additional symptoms besides an occasional headache. This went on for a few months before his pediatrician and school nurse mentioned taking him to a Gastroenterologist. We immediately made an appointment and were given a date of 2 months out since it was a child GI and they are always booked (this is what I was told). So, we wait and we go to this appointment in January 2016- he wasn't suffering in any major way and would immediately look and feel fine after vomiting. The GI didnt find anything in his bloodwork and didn't find anything else wrong with him. He was diagnosed with Cyclical/Functional vomiting and was prescribed an anti-nausea medicine to combat the vomiting. We had a follow up visit for April.
Starting point #2 :
In February 2016, Greg's eye suddenly started doing weird things. Sometimes we would look at him and it seemed like he was developing a lazy eye. Sometimes his eyelid looked a little droopy. But, you know, it is allergy season here and we all have allergies. We kept watching that eye but I was looking for an ophthalmologist to check him out... just in case. Turns out... this is another doctor that is hard to get into. I was told the soonest appointment would be for 1 month out. Every other opthalmologist was offering appointments 2 or more months out. No one found the list of symptoms to be surprising or alarming.... until I found Nicole at Dr. Most's office. She listened as I told her about this suddenly lazy eye and how he also has been complaining of headaches and vomiting. I started to think maybe the two were related and his vomiting/headaches were maybe due to eye strain... who knows right? Nicole offered me an appointment 2 weeks out and I took it. Then she called me back and asked me to come in the very next day.... just in case.
Here is where our story continues. On Wednesday March 4th, Dr. Most did a comprehensive eye exam on Greg. He has some obvious eye issues but after dilating his eye and staring into his eyes for what felt like forever Dr. Most asked Greg to go wait outside while he spoke with me about his findings. He told me Greg had optical nerve swelling that was causing his eye to turn in. He told me that it was one of three possibilities: a tumor, a cyst, or a condition called Pseudotumor Cerebri. He strongly recommended we get an MRI and see neurologist right away... We did. We had a neurologist appointment for that Friday 3/5 and an MRI scheduled for Tuesday 3/9. After we saw the neurologist on Friday, he had us rushed into the local hospital for an emergency MRI and then we were to return to his office for the results.
March 5th is the day we found out Greg had a tumor. He recommended we go to Yale that same night.
We went straight home and packed a bag. We were at Yale and admitted that night. He was immediately put in PICU (pediatric ICU) to be watched. We were told that he had a tumor in his 4th ventricle and that it was large enough to cause a major risk. We were told he would need to have surgery to remove it immediately. We were told it was possibly an Ependymoma. Then we were told nothing as we waited in PICU.
The next morning, doctors, residents, and other medical staff team members came in sporadically throughout the day each one offering a tidbit of information.
We learn that surgery is scheduled for Sunday.
We learn that he will need to have his head shaved for it.
We learn that doctors cant tell you if your child's tumor is malignant or not...
not for a week post surgery.
We learn that nurses don't always consider children to be people
and don't offer them the same respect they would offer an adult.
We learn that we CAN tell the nurses no and have some control over our child's care.
So, we get ready for surgery on Sunday and we wait. Sunday arrives and it's time for surgery. They took him away at 8:45 am and told us it would take 4-6 hours.
It takes 10 hours because no one accounted for the prep time or the time it would take for the pre and post op MRI. My heart is in my stomach by the time they called us and tell us that all went well and he was going to be ok!
The neurosurgeon tells us that he thinks he removed the entire tumor. He tells us the tumor has already been sent for pathology and we should have the results within 7 days. He thinks it is an ependymoma since those are most commonly found in the 4th ventricle and is the most common childhood brain tumor.
Then we go up to his room to wait for them to revive him from anesthesia. I have never seen someone wake up from a long surgery. I did not know what to expect. His face was swollen. He was immobile. He was freezing and shivering. He was gagging from being intubated. He sounded like he was having trouble breathing. He was crying out in pain. I was ready to kill some doctors. I wanted them to make it all better. NOW! I was crying my eyes out to see him like this. My husband (a trained EMT) tried to calm me down and explain the fucking gobbledigook the doctors were yelling at each other while trying to help him wake up. They manage to stabilize him and calm him down. I never want to go through that again. Ever.
This was our experience with the first few days of our son's diagnosis/surgery.
More later.
