April 12, 2013...the morning that changed our lives forever

The first two weeks of April that year were a whirlwind. On April 3rd, 2013, I received the wonderful news that I was negative for the gene that was responsible for Long QT Syndrome (What is it?), a severe electrical heart condition that my oldest sister was diagnosed with at age 18 after a sudden cardiac arrest. She is here with us and I know no one was happier than her to find out that our entire family (my Mom, 1 sister, 1 brother, 1 niece, and 1 nephew) all tested negative for the gene. This, unfortunately, meant that my Dad had to have had it and never knew. He died suddenly of heart attack in 2011.

April continued with Nathan waking up shrieking every morning before 4 am. We were doing everything we could possibly think of to keep him calm and comfortable to sleep to no avail: room darkening shades, different types of night lights, sound machine, radio, fan, none of it was working. He would wake at different hours of the night, but was up for the day around 4 am. Once he was up and walking around, he was a happy kid for the most part. That initial wake up, though, that was tough. We were getting anxious at the thought of April 12 coming. The dreaded MRI. Nothing could be wrong, right?  My nephews had larger heads, we knew of another child whose head measured larger, and I myself had a larger head! We were still hoping for the best.

On April 10, Benjamin got pink eye. Ugh! That's no fun! He was nice enough to pass it along to Nathan the next day. We started to worry as we didn't want to have to delay the MRI; we could not handle having to wait any longer than we did. We would learn later on this journey that having to wait less than 3 weeks for an MRI wasn't so bad.

Poor Ben and his pink eye

Nate's pink eye looked much worse

April 12th arrived and Stephen and I packed Nathan into the car to head to BayState in Springfield for an MRI. We were incredibly nervous; so much so that we initially went into the wrong building! (I went to college in Springfield so this should not have happened!) Once we got there, we spoke with the anesthesiologist briefly about his symptoms: large head circumference. He asked about Nate's vomiting (which there was none) and his ability to walk (which seemed typical for an almost 19 month old).

I don't normally take pictures of medical appointments. For some reason, I was compelled to take this right before they came in to begin the IV process to sedate him. This procedure did not go smoothly.

Based on our answers, he seemed to think we'd only be there an hour. Because he was so small and had to lay still for such a long period of time, he had to be sedated for the MRI. We were allowed to actually sit in the MRI room and watched Nate as he laid there peacefully. At one point, while attempting to stay distracted and flipping through a People magazine, I actually said to Stephen, "This is so hard. I don't know how some parents have to do this all the time." Wow...how naive was I?

While Nate was still sedated, the anesthesiologist came into the room to tell us that he had severe hydrocephalus (What is it?). He said that he would need emergency surgery, but they were going to back into the MRI to use contrast to find out what was causing the hydrocephalus. Once that was completed, I was able to hold Nate while he was still sedated. Hearing that he had hydrocephalus actually didn't scare me and for some reason, I didn't even think twice about it. My nephew had it and had to have several surgeries to correct it. So, in my head, I thought, "Okay, we can handle that, no problem." Two minutes later, the anesthesiologist came back in the room, except this time, he had another doctor with him. Stephen and I looked at each other and we both felt like we were going to throw up. The doctor looked at me and said, "Your son has a brain tumor." Six words that would change our lives forever. Six words that would change our lives in many more ways than we would've ever expected. This would be the first time I would ever see my husband cry. I sat there, holding Nathan, thinking there was no way we could lose him. No way. The doctors were kind enough to let us have some time with him before taking him back to complete the MRI. The rest was a blur. All I know is that they were prepping him for surgery and we had phone calls to make. How the hell were we supposed to tell our family this news over the phone? I will never forget these moments.

Stephen called his Mom first. She was watching Benjamin and Stephen just blurted it out. She said would drop Ben off at our cousin's house and head down. Then he called his older brother, Tom. I could hear him upset on the other end of the phone and could feel his pain. I decided to go into the nurse's office to call my sister.  Just 9 short months earlier, I had to call my sister to tell her that our Dad passed away suddenly and here I was having to call her again with horrific news. I had to call her first; I couldn't bear to call my Mom to tell her first. She had already been through enough with the four of us and now, she had to hear this news over the phone about her youngest grandson??   Thankfully, my Mom and niece were already with my sister, anxiously awaiting a phone call from me. They were expecting hear good news, I mean, he had no visible symptoms! I only had to say the words once: Nate was going in for emergency surgery to relieve the pressure on his brain and that our little baby had a brain tumor. Thinking back to this moment still takes my breath away. We were paralyzed in time. As we walked to where he would be operated on, so many thoughts went through our minds. We knew that news would travel fast, but we didn't realize how fast.