More than a Tumor: May 2014, the second scariest moment...

For those of you that are new to our blog, we are currently catching everyone up to speed and this post will get you to May of 2014. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

May started off with a bang. I was in the middle of receiving packages and deliveries every day for our toy drive. It was a wonderful distraction during an otherwise anxiety-ridden time. Nathan wasn't making it any easier. I swear he feels our anxiety as we approach scan time. He was in the middle of some of his toughest days, emotionally and physically. He was crying a lot, needing lots of my attention; plus, he hit his head four times in five days. Need I say more? Just tough. It's amazing that we're now nine months past that, and reflecting on it makes it feel like just yesterday. The anxiety is real.

Everyday prior to scan day (May 14th), I was sorting, organizing, and packing boxes. The boys would get so excited to see the brown truck pull up and unload our goodies. We were reminded every single day that we are not alone. That is a feeling I hope every one gets to feel at least once in their lives. It's a special feeling to be able to give back and have everyone you love join you in your mission. We had packages come in from all over the country; and those didn't include all of the deliveries that were being made at my Mom's house in Connecticut. On May 13th, I borrowed Stephen's cousin's mini-van as we figured out quickly that my SUV wasn't going to cut it. I was able to pack up 33 boxes filled to the brim with toys, coloring books, art supplies, board games, Lego sets, puzzles, books, and other baby items and left just enough room for Nate, my Mom, and the two of us.

All of the donations in our house

All of the donations squeezed into the car

We decided to drive up and stay over night in Boston as his scans are always first thing in the morning. We were a little nervous about leaving the car overnight overflowing with toys, but thankfully, no one even noticed. We arrived at Boston Children's Hospital and checked in for his MRI. I sent out an email to the Child Life specialist on the 9th floor and gave her an estimated time of our arrival. We were hoping that we could make the delivery in between his MRI and his clinic appointments.

Nate having a little laugh with Grandma

Nate and I pre-MRI

Nate's MRI went well; he was sedated successfully and woke up ready to go. Luckily, he usually has no issues with the sedation and wakes up ready to eat, drink, and leave. That's my boy! We walked upstairs and met with two Child Life specialists in the valet area. The look on their faces when I opened up the back of the van was priceless. I mean, I tried to prepare them with what we had collected, but you can't really believe it unless you see it for yourself. One of them had to run and get two more carts and some help from a security guard. We unloaded the van and also handed them an envelope filled with monetary and gift card donations as well. What an amazing experience! I was glad to be able to share it with Stephen and my Mom.

outside of BCH with all the donations and the Child Life specialists

We decided to grab some lunch before we headed over to Dana Farber for clinic. We were able to laugh and talk about all the donations, while secretly wanting to vomit over the thought of the results of the MRI. One thing I've learned over this past year is that no matter how hard you try to learn ways to cope, sometimes those scary moments still occur. There's no stopping it.

(dancing in the waiting room)

After getting his vitals taken, we went into the examination room and waited. This is always a tough process as you never know how long you're going to have to wait. There's a team of doctors, all specializing in different aspects of the brain tumor world; they sit down and review all of that days' patients' scans and then break off and see patients. There was a knock on the door and three people walked in. Not a good sign. My stomach did a flip and I know Stephen's did too. We glanced at each other and gave the "Oh shit" look. Three doctors never walk in at the same time unless they're giving bad news. We usually see the nurse practitioner first and then the oncologist. Today, that was not the case. My Mom was in the corner keeping Nate occupied. One of the neuro-oncologist's (not our doctor) brought up his scans and simply said, "I'm sorry to say Nate's tumor has grown." In the pit of my stomach, I knew those words were coming, but there is no way to prepare yourself to hear it. Quiet tears rolled down my cheeks as she explained what they saw, how that day's scan compared to January's, to October's, to July's, and to his original scan on April 12, 2013.

She continued to talk of possible treatment and her belief that it was probable that he would start chemotherapy sooner than later. While she spoke, the neurologist examined Nate and told us that he thought Nate looked good. Yeah, well, looks can be deceiving. You can't tell by looking at him that there's a tumor sitting on his brain stem that could potentially kill him if it doesn't stop growing. We felt like we had just been punched in the stomach; this conversation brought us right back to the moment we were told he had a brain tumor.

During that conversation with the neuro-oncologist, we were told that although we were told that Nate's tumor had been stable at each scan, there was actually growth each time. Because it was such slight growth, it still fell under their parameters of "stable." What????? I wanted to punch something. How on Earth could you tell parents that things were stable and fine, yet the tumor was actually growing?? This would take me a long time to fully grasp and understand.

We left there feeling absolutely numb and horrified. We went in expecting to be told that we could move to 6 month scans; instead, Nate's case was scheduled to be reviewed by the tumor board the following morning and we were told to go home and wait for their call either Thursday or Friday. The ride home was a quiet one. I would alternate between staying calm and crying. My Mom sat in the back seat with Nate and simply hold his hand. I felt terrible that she had to sit through that conversation with her youngest daughter and her youngest grandchild and hear the news firsthand. It's one thing to hear it over the phone, but to hear it straight out of the doctor's mouth is another. I'm not sure who I cried for more that day; my Mom or Nate.

We sent out messages to our families and close friends as I was unable to talk and tell people over the phone. I was not ready to vocalize what I had just been through.

We didn't hear anything the following day and after much discussion, we decided to get a second opinion from CHOP in regards to potential treatment. I started that process that night. I got a phone call on Friday morning from one of the neuro-oncologists that the tumor board reviewed Nate's scans and decided it was best to wait and do another scan in three months (August) before making any treatment decisions. They also scheduled an appointment with the ophthalmologist in Boston for Monday to get her opinion as well.

Nate's eye appointment on the 19th went very well; his vision was perfect and there continues to be no damage to his optic nerve. The ophthalmologist's recommendation would be for no treatment. Thank God! On the 21st, I received confirmation that CHOP received all of Nate's records and that they would be reviewed as quickly as possible and I would get a phone call as soon as possible.

On the 23rd, I left for Hagerstown, MD for a bowling tournament. My Mom was joining me and I was looking forward to having a great weekend with her and my friends. On our way there, I received a call from Dr. Belasco, one of the doctors from CHOP that reviewed Nate's records. She was in complete agreement with Boston's diagnosis and treatment plan. In fact, she said, "the entire country uses Dr. Kieran as their second opinion. I would do whatever he thinks is best." It was incredibly reassuring to hear another team of doctors agree with your original team. As hard as it was, it was time to move forward and enjoy the time in between scans. We'll cross that bridge when we come to it.