TRANSCRIPT

May 21st, 2015. It was a Thursday before Memorial Day Weekend. It started just like any other day. My four‑year‑old Alex got up and he was ready for his day, very excited because it's Thursday. It was Library Day at his pre‑K. It's his favorite day of the week.

I was getting my coffee, trying to get ready for the day, watching him do his morning thing, running around, watching TV, all of that stuff when I noticed something was odd about his left eye. It was crossing inward.

“That's weird,” I thought. I thought maybe he developed lazy eye. It was a common thing in my family. I had it. My mom had it. So, I took him off to school and I called an eye doctor and made an appointment then went about my day.

I was at my desk. I was a web designer at the time, so I was at my computer pretty much all day and I got an email from his teacher.

She said, “Have you noticed Alex's eye?”

I replied, “Yes. I made an eye doctor appointment.”

And she replied, “Okay.”

About an hour later, she sent me another message and she said, “I think something is wrong with the way he is walking. His balance seems off. He had trouble getting to the trash to get rid of his lunch.”

And I was like, “That seems weird.”

So, I made a pediatrician appointment. I picked him up from school and we headed over to the pediatrician's office.

The pediatrician was new. Alex hadn't seen him before. He was a young guy. He comes in and he asked Alex to walk in a straight line. He looks at his eye and he turns to me and he says, “I need you to go and take him to John's Hopkins to get an MRI. I think it's a brain tumor or brain cancer.”

I can only describe this as an out‑of‑body experience. It was like I was looking at the room from a different place. I couldn't believe that that's what he actually said.

He called in Alex's regular pediatrician. She was with another patient. She confirmed that he might be right and that we should get there right away.

Alex looked at me during all of this and he says, “Hey, Mommy, am I going to get dinner?”

And I said, “Yes, we're going to get you dinner,” as I packed him up to leave the office. I remember walking out of the pediatrician office and it was very quiet. The staff had pretty much stopped what they were doing and watched us leave. It almost felt like walking the plank.

I called my husband Sean and told him this news, picked him up and we made the two‑and‑a-half hour drive to Baltimore, which was a very anguished drive, to say the least.

When we got there, they brought him into the emergency room and started to do the vitals, which, little did I know, would be one of about a million times I'll be holding his arm still for blood pressure.

The tech whispers into my ear. She said, “Does he know?”

And I said, “Know what?”

And she said, “About the brain tumor?”

I was like, “There's no brain tumor. This is crazy.”

So, we go into the ER room and the nurses and doctors start coming in to prepare us for this MRI. They tell me he has to stay very still. He can't move. Needless to say, both four‑year‑old Alex and Mom were very scared.

We got into the MRI and I'm trying to tell him to hold still. He's scared and it's loud. He's crying and I'm crying. You know, for 30 minutes, it was pretty, pretty rough.

They got us out and back into the ER room and we waited.

A few minutes pass by, then maybe about 15, an attending walks in. She's putting on her coat and she says, “I'm leaving for the day, but, hey, they found something, so someone will be in to talk with you shortly,” and she left.

I remember looking at Sean and his face turned white. He's like, “What did she just say?”

And I said, “I don't know. I think that she said they found something.”

Another doctor had been passing by and overheard this, and she came in and took us into a room. She told us that there was a mass in the middle of his brain and that the doctors were working to figure out what they were going to do. They would be in to talk with us.

I remember Sean saying, “Is he going to die?”

And she said, “No, I don't think that's… I think it's going to be okay.”

I can describe this feeling, because I now feel it often, but it's just this like tightening of the chest and my stomach starting to hurt. It was just this like white hot fear. What is this? What is happening?

They took us to the pediatric ICU and put us in a room there. A nurse sat with us through the night as we waited to find out what the plans were and what they were going to do next.

Alex said to me during that time, he said, “Mommy, am I sick?”

And I said, “I think they're just trying to fix your eye, buddy.”

The next morning, early, in comes the anesthesiologist to tell us they were going to put him under for this next MRI. A neurosurgeon came in and said they were going to look and see what was going on so that they can decide how to treat the tumor.

They start to put him to sleep and they take him out of the room and they tell us that we can go get a coffee. So we started to navigate the labyrinth which is John's Hopkins to get to the cafeteria.

No sooner do we get there but our phones start blowing up. They call us back. “Come back right away.”

So we run back to the ICU where we meet a neurosurgeon. He tells us, “Here's some forms to fill out. We need to go into surgery right away.”

They escort us to the waiting room and we wait for eight hours. And during those eight hours, nurses came in to check on us and assure us that he is in the best hands and that everything was going to be okay. One nurse even said, “He probably will be home next week,” so we felt very reassured.

As the day progressed and we waited, the neurosurgeon came out to tell us he was finished with the surgery. He told us the tumor came out all in one lump and that it came out easily and that he thinks it's benign. So we were like, “Oh, thank goodness. “ Benign sounded not too bad, so we felt very hopeful.

They took us back into the ICU and they brought Alex out of surgery and they told us he would be awake probably within the hour, but he didn't wake up. He was covered with IVs and all these machines. And I remember the doctors coming in and jostling him and yelling at him and he didn't wake up.

So, throughout that night after surgery, there started to seem some things were concerning. One, that he didn't wake up, but, two, fluids kept leaving his body. He was just peeing nonstop.

The next morning, we were greeted with just a parade of specialists: endocrinology, neurology, neurosurgery, ophthalmology. The biggest thing they told us was that he had this condition called diabetes insipidus. Not the regular diabetes that we know about but this one that means that he doesn't make the hormone to keep the fluids in his body, and that his body will just rid all the fluids unless they give them a medication to replace the hormone.

Okay. This seemed manageable.

Until they said, “Well, his blood sodium keeps swinging. It's getting high and getting low, because we can't get the medication right.”

So, this became what kept him in the hospital for six weeks.

As we were starting to hear some different things, I heard that the name of the tumor was cranio‑something. So, I Google searched cranio brain tumor and come to find out this tumor, benign and non‑cancerous, causes the following issues besides diabetes insipidus. Endocrine dysfunction, adrenal insufficiency, growth hormone deficiency, loss of short‑term memory, neurocognitive effects, and the kicker was morbid obesity not manageable with diet or exercise and an insatiable hunger that cannot be cured by eating a typical meal.

So, all of these things we were not told about, but the one diabetes insipidus was the one where he had to be in and out of labs constantly.

After discharge, he was flown back to Hopkins multiple times. These conditions have been very difficult to manage. I learned quickly that no one really knew what was going on in the brain and how this all worked.

So, we left the hospital, and Alex was so different. He wasn't even the same kid when he went in. We were crushing medications and seven or eight different pills getting crushed up every day. And there was this constant management of care of these medical conditions that were a matter of life and death.

Ten years later, after we have learned to become his biggest advocate, and even starting a patient advocacy organization for this benign tumor, craniopharyngioma. Alex was hospitalized for septic shock just three weeks ago. He almost died. It has been ten years of battling the aftermath of this tumor craniopharyngioma, but we will continue to do so and advocate for him and all of those who suffer from this benign brain tumor.