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.

crazy boys swimming in May!

Just a few of our supportive friends wearing all grey for Nate!

Allowing ourselves to relax

Some of our donations filling up the shelves!

Some of our donations filling up the shelves!

Getting through April 2014: LONG POST!

Easter morning, 2014

April proved to be a busy month! We were so excited for our announcement of doing a collection for Boston Children's Hospital, specifically 9-North: where Nate and I spent 5 days after his first of two brain surgeries. On April 3, 2014, I posted this on my Facebook page:

"As we approach the first anniversary of Nathan's brain tumor and hydrocephalus diagnosis, we have decided to celebrate him and his strength to overcome many obstacles by conducting a toy and book collection for kids that are not as lucky as he has been. They will be donated to the specific floor that he was treated on at Boston Children's. His doctors and nurses were incredible in every way and got us through one of the most difficult times in our lives. We've also met some incredible families and kids on this journey we are on. If you are interested in making a donation of any kind: toys, books, art supplies, gift cards, etc. (ages birth - 18), please let me know and I show you how you can help! You can private message me for my address or the address of the collection spot in Plainville. We will be bringing them to Boston on May 14. Thank you for honoring the perseverance of Nate the Great!"

We had no idea the response that we would generate from this one post. We received our first donation on April 5 and continued to receive donations of all kinds up until the day we left for Nate's next scan on May 14. It was an incredible 6 weeks. I'll touch more on that later.

In early 2014, I had added the app, Timehop, to my iPhone. This app is fun to use as it gives you a glimpse into the past allowing you to see your posts and pictures from previous years using your all of your social media outlets. This app can be great as it serves as a reminder of all the good things that have happened, but it can also be a source of sadness when it gently reminds you of what has happened. On April 6, 2014, I was given a Timehop reminder of the crazy headaches I had while I was pregnant with Nathan in 2011. I suffered through 16 long weeks of debilitating headaches all while attempting to care for Benjamin, who was not even 18 months old at the time. I sat and looked at the "gentle" reminder and began to question myself. Were these headaches a sign of things to come? Are they somehow related to what is going on with Nate? It was a time of crazy reflection, but also a realization that we may never know the cause of the tumor. But, does that matter? Will a reason change the way we live our lives? The answer is no. Nathan was given this tumor for a reason and he is here for a reason. We, as a family, will do our part to help change the world one person at a time.

The second week of April brought several emotional struggles. We were coming up on the first anniversary of Nate's diagnosis. We often re-play that day in our minds, but actually experiencing the day would be a whole new experience. But first, on the 10th, as we were delivering flyers in our neighborhood for our donation drive, an unleashed dog ran from its garage straight at the boys, Lincoln (our 100 pound boxer), and I. Lincoln did his best to fend him off before the owner grabbed him. Then, in the next second, the owner let him go for some reason and the dog crashed through me and knocked over the stroller, allowing Nate to go head first into the ground. Seriously?? I was absolutely beside myself. I gave the neighbor a few choice words and may have used the brain tumor card to make him feel like a piece of shit. (mind my language) Sometimes, people just don't think. Thankfully, Nate wasn't injured. 

If that wasn't enough, on the 11th, I somehow lost my wallet at Target. If you have ever done this, you know the feeling you get in the pit of your stomach. I realize it's a small thing compared to everything else that has gone on in the past year, but I was still hysterical at the thought of losing it. I drove back to the store and learned that someone had turned it in! I had dropped it in the parking lot and someone actually turned it in without even glancing through it. Everything was there; from my license to Nate's Dana-Farber information card, all the cash and the credit cards. Unbelievable. The front end manager must've thought I was crazy when I gave her a hug. She certainly didn't realize the overwhelming emotion I was feeling that week.

April 12th arrived; Stephen was in Florida playing golf with a group of friends and I was home with the boys. We shared a nice conversation at the beginning of the day to remind ourselves of our lucky we are to be where we are and that Nathan's an incredible little boy that has made so many gains over the past year with the help of so many people. For those of you that aren't on Facebook, this was my post from April 12, 2014:

"It was a year ago today that Nathan was diagnosed with an inoperable brain tumor and hydrocephalus. I don't have the words to describe that dreadful day. But, he's made it through the first year and is incredibly blessed to have made the strides that he has. We are beyond lucky to be his parents and we soak in every little thing that makes up Nate the Great.
 
Nate’s year in numbers: 

• 5 MRI’s
1 MRI w/contrast

• 1 emergency surgery to place external shunt

• 1 ICU ambulance ride from Springfield to Boston

• 1 Boston Marathon bombing

• 1 surgery to complete endoscopic third ventriculostomy (w/an unsuccessful attempt at a tumor biopsy)

• 1 inter-operative MRI

• 1 Early Intervention evaluation

• 1 dentist appointment

• 2 pediatric ophthalmology appointments 

• 1 ER visit
 (croup)
• 1 pediatric otolaryngology appointment

• 1 surgery to remove adenoids and put in tubes

• 2 hospitals

• 1 adult neurosurgeon

• 1 pediatric neurosurgeon

• 2 pediatric neuro-oncologists

• 1 sleep consultant

• 1 psychologist

• 1 social worker

• 1 development therapist
• 
14 rounds of antibiotics (pink eye, ingrown toenails, endless ear infections, croup)

How we got through it all:
~1 husband and 1 wife

~2 precious little boys

~3 grandparents (and 1 Pepere helping from Heaven)

~countless family and friends

~5 other adults in Nate’s life that probably don’t even realize how much they’ve helped him, (or me!) (1 playgroup leader, 1 swim instructor, 1 gym class instructor, 1 music class teacher, 1 daycare provider)

~1 playgroup with the most supportive group of Moms and kids

~several blogs written by brain tumor families

~3 Facebook groups made up of parents with children with brain tumors

~countless other families dealing with children that have any illness
 
This past year has taught me an infinite amount of lessons. I hope that my posts about Nate weren’t bothersome, but gave some perspective and motivated you to learn, to grow, to inspire others and be inspired. I know that I’ve done each of those things this past year and I’m not sure I would’ve if it weren’t for Nate. I know that out of all the brain tumor diagnoses, his is one of the best that doesn’t always require typical tumor treatment. However, he is also in that percentage that won’t be considered cured or in remission. His best case is “stable.” This means constant monitoring and knowing that even in the best case, he will never be tumor-free. Outside of a miracle, we will never be able to get that “clean scan” celebration. Most tumors get a diagnosis, treatment, post-treatment, and remission. Nate gets a diagnosis, watch and wait (treatment is never off the table), and hopefully, stable. We are always holding our breath."







It was a good way to allow me to reflect on our journey, the difficult moments, the good moments, and the realization that we don't have it so bad. We are surrounded by some pretty amazing people. Thankfully, the day wasn't as bad as I thought it would be.

Here are some videos for you to smile about...

On the 22nd, Nate and I traveled to Waltham to have his surgery follow-up and hearing test. Thankfully, all went well and his hearing returned to normal range. We were definitely excited to hear this!

Back to the "anything kid" donation drive. This proved to be one of the best experiences in my entire life. To see all the love and generosity pour in from everywhere made our hearts smile and it helped ease our scanxiety for the upcoming scan on May 14. On May 5th, before the actual "final" count of our donation, we had counted 8 boxes with 63 coloring books, 90 assorted art supplies, 25 board games, 4 Lego sets, 18 puzzles, and 14 baby items. This doesn't include monetary donations and gift cards. I hope you enjoy the pictures that were taken throughout the month of all of the donations!