Chapter 7: Jacksonville - Part One

The next morning, January 31st, I was awake at 4:00am to go into my Mom and Dad's room to help them get the girls ready for their 7:00am flight to Tampa. My parents have a winter home in Zephyrhills, which is thirty minutes from Tampa in a beautiful gated community. Stella was packed, ready and standing by the door vibrating with excitement to get to "Flowida", and Rowan was cranky that she was woken up. No one likes a cranky Rowan. This would be the first time I have been so far away from them, and I was anxious at the thought of not being with them if they wanted me. I struggled with how little I had been able to see them for the past month, and I could already tell it was taking its toll on Stella. Her anxiety was developing slowly, and before long it would be at its peak. I kissed the girls and told them I would see them soon and that I loved them more than anything, and off they went to get the shuttle to the airport.

Brittany and I got Emmett up and started preparing to make our way to the airport for our 10:00am flight to Jacksonville. Emmett hadn't showered since getting his g-tube in, and he was extremely nervous at the thought of water hitting it. Slow and steady, he made his way under the water, and after the initial shock wore off, we were yelling at him to get out of the shower for fear of missing our shuttle. I arranged all of Emmett's emergency medical supplies in my carry on so I had it on hand if needed. I had a spare g-tube button, feed extensions, gauze, alcohol wipes, stitch tape, cauterizing sticks, syringes, bandages and sterile water. I was fully prepared for every situation that could have gone wrong as far as his g-tube and portacath were concerned. We closed up our luggage, made sure we had all documents in order and made our way to the lobby to catch the shuttle to the airport.

Emmett was listed as a medical traveler, and because of that, conversations at each juncture while in the airport took a little longer. While we were waiting in the Customs line up, we were observing each Customs officer, and Brittany and I both said to each other "I hope we don't get that guy". Sure enough, we got "that guy". He called us over, asked for all our passports and where/why we were going to the United States, in a tone that immediately pissed me off. I told him we were going to Jacksonville for my son to have radiation and chemotherapy, and handed him all of the documentation from the hospital. He opened up our passports, looked at me and said "where is his Dad?". My heart sunk - the one document I had forgotten to get was a signed letter from Jared stating I could cross the border with Emmett. I explained that this all happened very quickly, and that Jared would be joining us in a week when he drives down with our vehicle. He looked, very briefly, at the documentation from the hospital, rolled his eyes, then looked at Brittany and I and said "you two, over there" and pointed to the back wall. I instantly saw red. My face was hot, and I was enraged. He saw the look of "over my dead body" on my face, and said "I just want to talk to your son" in an ever so slightly, but not really, softer tone. I walked backward toward the wall, not taking my eyes off of Emmett. Officer crank-ass came around the desk and kneeled down on the floor next to Emmett, and gave him a fist pump. We could hear him ask Emmett about his medical issues, and Emmett pointed to the back of his head for the Officer to look at his cut. They talked for a few more minutes, then he waved us back over. We walked up to the desk, and he was noticeably softer with his tone. He told us to make sure we had as much documentation as possible on the way home, then looked over at Emmett and said "good luck big man", and we went on our way. Disclaimer: I know Officer crank-ass was just doing his job, but that doesn't mean I have to like him.

We sat in the terminal and ate some breakfast before our flight. Emmett was still having bouts of vomiting every now and then, which wasn't abnormal considering his diagnosis. During breakfast would be his first vomit of the day. They called us on to the plane early so we could get him situated before anyone else boarded. We had a connection in New York at LaGuardia

airport, so this flight would only be two and a half hours. Emmett got his brand new MacBook out, thanks to his Uncle Ian, and watched some movies. This was the first time I flew without a small child that needed constant stimulation in 5 years, and I honestly didn't know what to do with myself. I took out my book and read from the time we took off until we landed in New York.

By the time we landed, we had less than thirty minutes to make it to our next flight. When we got into the terminal, we asked someone where we needed to go to get to our next flight, and it was, literally, at the other end of the airport. Because Emmett was a medical traveler, an airport employee met us to help get us where we needed to go. We had to walk fifteen minutes to catch a tram that would take us on another fifteen minute ride along the runway to the other side of the airport, then walk another ten minutes to our gate from there. The man who was helping us was in his early twenties, with long dread locks, and had absolutely no speed other than "saunter". He was very sweet and had us laughing constantly, but his sense of urgency lacked, despite Brittany and I vocalizing that we were going to miss our flight. We arrived to our gate when there were five people left to board. How we made it is a miracle.

We got on the plane and were sitting at the very back. The flight attendant was an angel. She made sure we had whatever we needed at all times, and was constantly checking up on us.

The flight to Jacksonville was hell. There was constant turbulence, which made Emmett sick three times. The first time we didn't get the bag on time, and most of it landed on my pants and jacket. After we got the bag and I was holding it for Emmett, I looked over at Brittany vomiting in her own bag next to me. It was absolute chaos. The flight attendant came over and stared at the scene in front of her, and ran and grabbed some wipes and garbage bags. She also bent down and picked up the contents of my purse that was all over the floor from when I was panicking to look for a vomit bag for Emmett. It was like a scene out of a movie. Brittany got up and went to the bathroom, and I got Emmett a new pair of pants from the carry on bag and got him washed up. Everyone got back to their seats, and Brittany and I looked at each other and laughed at what just happened. The flight attendant, God bless her soul, dropped a bottle of wine on my tray table shortly after.

I remember every thought that took my mind away from whatever I was doing in that specific moment. I would read my book, and before I knew it, I had flipped the page three times and didn't remember a single thing about what I read. I recall my biggest distraction to be a feeling of guilt, which up until that point was something that never crossed my mind. Why Emmett? Was he exposed to some sort of chemical in the farming/ranching world? Was it something I fed him? Do Jared or I carry a gene that was passed to him? Why couldn't it be me? I remembered Jared asking the Neurosurgeon the day before his surgery what causes this type of tumor, and he replied "bad luck". For some reason, hearing that from one of the smartest people I had ever met in my life wasn't enough to stop my mind from blaming myself for Emmett's sickness. It turned out that time would be the only way to heal that burden I put on myself, and is still something I struggle with to this day.

Finally, at 7:00pm, we touched down in Jacksonville. I felt like dropping to my knees and kissing the ground after the day we had, but as we walked off the plane and I felt the damp heat hit my face, I was suddenly "over" the last two hours. It was immediately soothing, and Emmett was all smiles. We made our way down to grab our luggage, which came out right away. I walked over to get our rental car, and the employee asked me what brought us to Jacksonville, so I told her our story. She looked over at Emmett, and asked me if I wanted to upgrade my rental. When I asked her to what, she handed me the keys to a mustang convertible, for no extra charge. When we walked into the lot and Emmett saw the car, he was elated. You couldn't wipe the smile from his face if you tried. Getting the luggage into the car was a challenge. In the end, Emmett had a large suit case sharing the back seat with him, and Brittany had a carry on bag below her feet. It was a game of Tetris, and we won.

When we got into the car, I opened my messages on the Air B&B app to let the owner of the house, Kat, know we were on our way, and I had an unread message from her. She told me that the house would not be ready for us that night, but that she booked us a room at a hotel downtown, and had the address included in the message. It was a little inconvenient, but we were so grateful that she had a place for us to go for the night, since we were absolutely exhausted. We started up the car, put the top down and made our way to the hotel.

Downtown Jacksonville at night was beautiful. The buildings and bridges were lit up with colorful lights and there were streets of beautiful old stone. The hotel Kat booked us at was stunning, and located right next to the water. All arrangements were made before we got there, and we went straight up to our room. And what a room it was. We walked into a huge suite with two queen beds, and connected to it was another room with a separate living room, dining area and second bathroom. Emmett was not feeling great after a long day of travelling, and was vomiting quite frequently. We all showered and ordered room service, then Emmett went to bed shortly after. Brittany and I stayed up a little longer to map out where the University of Florida Proton Radiation Centre was in relation to the hotel, as Emmett had his first appointment at 9:00am the next morning. We decompressed from the day, then went to sleep.

The next morning we were up early to eat breakfast, then make our way to his first appointment. The sun was shining, and the air was hot. There were split seconds within that first day that my mind allowed me to enjoy the moment for what it was, and not think about the reason we were there. The palm trees, the flowers, the heat, the little lizards, the beautiful birds - all of it was a welcome sight, and I found myself frequently thinking "if we have to be anywhere while in this situation, I'm glad it's here". Jacksonville would very quickly begin to claim pieces of my heart, and those pieces will belong to that beautiful place for as long as it beats.

We pulled into the parking lot of the Proton Clinic, and headed inside. The building was beautiful, clean and bright. The parking lot security guard, Rosco, greeted us with a "How you doin', Man?" to Emmett, which would become a routine question for the next six weeks. Rosco was a gentle and kind soul, who we grew to love immediately. When we walked into the lobby, I walked up to the receptionist and told them Emmett was here for his appointment. The receptionist, Mary, looked up at me and said "Oh! Our other Canadian family!". She took us through some sliding doors, and straight to the office of the "Payments and Financing Coordinator". I signed a whole bunch of paperwork, got all the details ironed out, then waited in the waiting room to meet with the the Radiation Oncologist, Dr. Danny

Indelicato. While we waited, a nurse came to get Emmett to do baseline vitals. These would be taken every Wednesday throughout the six weeks to ensure he wasn't losing too much weight or having any significant drops in blood pressure from treatment.

Before long, Amy came into the waiting room to get us. I had been communicating back and forth with Amy since the decision was made for us to go to Jacksonville. She was the lead nurse that was in charge of scheduling Emmett's radiation, and coordinating with the rest of the Oncology team and Wolfson Children's Hospital and and Nemours Children's Health. She was soft spoken, and an overall calming presence. I always felt comforted and at peace when she was around us.

We went into the office and reviewed all of our paperwork with Amy to ensure they had all the correct information. Then Dr. Danny and a Resident came into the room. Dr. Danny was confident and well spoken. In my experience with him, he never sugar coated anything, and was a straight shooter, which I absolutely loved about him. He treated Emmett like a buddy, and spoke to him in a tone that didn't exude pity or sympathy. "This is what you have, and this is what we're going to do about it". I respected his approach, and I sincerely believe Emmett did as well. They did a series of neurological function tests with Emmett, and there was an obvious "lag" in his peripheral vision when he looked to the left. When Dr. Danny's finger got to a certain spot, he would see double. All common symptoms, we were assured.

Emmett was quite obviously bored once the examination ended and we started talking amongst ourselves, which was made abundantly clear by the not so subtle sighs and heavy breathing. Amy called Jasmine, who was the Child Life Specialist at the Proton clinic, to come down and get Emmett so that the adults could speak freely. Jasmine walked in with long beautiful brown hair, a smile from ear to ear, the most adorable floral print pants and a fanny pack. I adored her instantly. I knew she was going to be an integral part of our journey the second I laid eyes on her. And to this day, I still consider her a very important part of our lives. She is also a new Mama to a beautiful baby boy, whose name is Emmett!

Jasmine took Emmett to go build some LEGO, and Brittany and I sat and spoke with Dr. Danny for another twenty minutes. We went over the plan, which would be six full weeks of radiation, for a total of thirty five rounds. The first four weeks would be targeted toward the brain only, and the last four weeks would be brain and spine, to target the tumor cells that were found in his spinal fluid. We talked about the benefits of Emmett receiving chemotherapy simultaneously with the radiation, specifically the Carboplatin. Carboplatin is used to "desensitize" or "slow down" the movement of the cancer cells, which in turn allows the radiation to blast a slower moving target. Every time he was scheduled for radiation, he would also be scheduled for an infusion of Carboplatin beforehand. He would also receive Vincristine once per week, which is used to stop cancer growth. We were asked to come back the next morning so that Emmett could be fitted for his radiation mask, as well as have an MRI to measure the exact location for his first target markings.

We walked out into the lobby, and Emmett and Jasmine were sitting peacefully building a LEGO set and having a conversation amongst themselves. We sat down so he could finish his LEGO, and while we were waiting, a beautiful tall blond woman and her daughter walked in the door. The daughter skipped through the doors as she smiled her big beautiful smile, and went straight over to the computer where she scanned a badge that was attached to a lanyard around her neck. She had an oversized sweater on, leggings, had hot pink gel nails and the cutest pink beanie, which I assumed was covering an even cuter bald head. Remember these two - they're important.

That was the only appointment we had that day, so once we were finished we went back to the hotel to pick up our luggage, then headed to our Air B&B. We drove for about 10 minutes before arriving at a beautiful house, which had a covered porch off the front door, a palm tree on the front lawn and white lights strung across the yard.

This was our home for the next six weeks. It had three bedrooms, four beds, three bathrooms, a beautiful kitchen and a large back yard. The only thing better than the house itself, were the people who owned it. I contacted Kat and Will Richards as soon as I saw the listing on the Air B&B website while we were still in Nova Scotia, and from the

moment I started communicating with Kat, she was determined to ensure we had the most comfortable stay possible. She set up a crib for when Rowan came, helped us with logistics and was consistently checking in on how we were doing and if there was anything we needed. If any problem arose, it was rectified within an hour. This house was our safe haven. Emmett had his favorite spots throughout the house - on the front porch where he would set himself up to do his LEGO, his favorite arm chair that he would sit in to play Fortnite and Minecraft with his cousins in the living room, his favorite chair at the dinner table when it was too hot to be outside and when he was feeling sick, his favorite side of the big bed where he would put on a movie and eventually fall asleep in hopes of sleeping off the nausea. This house provided a sense of comfort to a family that was in an otherwise uncomfortable phase of life. I could cook three meals a day for my family, get up in the morning and make my own coffee. Being able to do those simple things provided me with peace. It allowed me to feel a sense of normalcy in between the moments of disruptiveness that had begun to inundate our life.

We put all of our luggage into the house, did a quick inventory of what was in the kitchen, then made our way to Target and Walmart for everything we needed. But first, as requested by Emmett, went to the Olive Garden.

The drive to his first chemotherapy appointment each day was exactly nine minutes from our house, and from there a twelve minute drive to the proton clinic. We could not have picked a more perfect location, and we truly felt at home.    

I couldn't help but appreciate where we were, physically. There was no worse reason for us to be where we were at that time, but if this had to be our path, I was glad it was in Florida.

Some of the most difficult mornings of Emmett's life were followed by afternoons of walks on the beach to collect sea shells, visits to alligator rescues, catching lizards in the back yard, taking his scooter to the park to look for manatee's in the lake, trips to the zoo, drives to St. Augustine and Savannah and so much more. Each new bad experience came with a new exciting one, and in my opinion, made the six weeks more tolerable to Emmett.

The next morning, we were up and out the door early to make it to Emmett's appointment at the proton clinic. We didn't have to wait long before Jasmine and a radiation technician came out to get him. As I got up to go back with him, Jasmine told me that she would take him, and that I could sit and wait for him in the waiting room. I was taken aback, not because I didn't trust her, but because there hadn't been a step along this journey where I wasn't directly beside him holding his hand. This was my first experience with giving up control, and I didn't like it, but deep down I knew it was necessary for both him and me.

He went back, very clearly anxious, and was gone for roughly an hour. While he was back there they did his MRI to determine his markings, and have his mask molded to his face. The mask was a hard honeycomb plastic, that was heated up and formed around Emmett's face and shoulders. At the mouth, there was a mouth guard put in that Emmett would have to bite on every time he wore the mask. The purpose of the mask was to prevent even the slightest movement as he was receiving his radiation. The edges of the mask had hard tabs attached that wrapped around the underside of the table, and were screwed to the table with a drill.

Once screwed to the table, Emmett was rendered completely immobile from the shoulders up. Every time he came out of his radiation appointment, he would have a "honeycomb" face from where the mask was pressing against his forehead and nose.

At first, the mask was a plain yellow. Two weeks into radiation, an artist came into the clinic and let all the children who were receiving radiation choose which design they wanted on their mask. In true Emmett fashion, Spider Man was the winner. For children living through the worst possible circumstance, everything imaginable was done to make their experience bearable, and to make them feel special.

While we sat in the waiting room, in walks the tall blonde and that cutie with the pink beanie and hot pink nails. The woman sat in a chair a few tables down from us, while her daughter went outside to try to scare her from the other side of the window she was sitting beside. She came back in, and the technician came out and called the name "Ellie". Her mom looked over and said "Ells, it's your turn babe", and off Ellie went, skipping toward to the double doors to receive her radiation treatment. I felt an instant connection with this woman who I had never spoken to in my life, so much so, that I looked over and said "Hey, are you Canadian?". The tall blonde looked over at me, and our eyes locked. Before even saying anything, she pulled a chair over so close that our knees were touching. That was the first time I met Sam Taylor. She was from Ontario, and her daughter Ellie was half way through her treatment for Rhabdomyosarcoma. Sam instantly became my person in a way that I never knew I needed. I could verbalize my thoughts to her that any other person would see as irrational or counterproductive, and she would reply with "I feel that way too" or "I had those thoughts as well". She understood my every emotion and thought, and for the first time in a month, I could talk freely and not have to explain myself. She just got it.

Emmett came out with his cute little honeycomb face, and I introduced him to Sam. Up to this point, Emmett hadn't experienced being "accessed", where they insert the needle into the port in his chest. Sam introduced us to the EMLA patch, which funnily enough was only available in Canada. It sits on the skin over the port site, and has lidocaine on the sponge that rests on the area where the needle goes in. Sam said to Emmett "wait until Ellie comes out, she'll tell you!".

A few minutes later, Ellie comes bouncing out the same way she went bouncing in. She came over to us, and Sam introduced us. She was the sweetest girl, with the most infectious smile. Sam asked her to tell Emmett about the patches, and she showed him exactly how they work. She raved about them, telling Emmett that once you let

them sit on your port for an hour, you hardly feel a thing when the needle goes in. Emmett was sold, and had me call Jared to look all over the province for these patches before they made the drive to Florida. What we didn't know at the time, was that Ellie was absolutely petrified of getting accessed. She only needed chemotherapy once a week while in Jacksonville, as her chemo was predominantly completed pre radiation. For Ellie, Emmett's comfort and well being was more important than her discomfort and fear toward being accessed. She put him first, which is the ultimate testament to who Ellie is. This beautiful child, who had every reason to choose bitterness and resentment toward life, chose love and compassion.

Sam and I exchanged numbers, and that was it. The beginning of a life long friendship. Two people bonding over our children having cancer, and it was, and still is, without a doubt, the tightest bond I've ever felt, and I've never felt more understood than I do with Sam Taylor.

We left the proton clinic and made our way to Nemours children's hospital, where we were scheduled to meet with Emmett's oncologist, Dr. D.K. We arrived to the eighth floor, and were greeted with a view overlooking the water. It was a very serene office, for being one that cares for children with cancer. Emmett's name was called, and we were taken to an examination room. Dr. K came in and was, like all the healthcare professionals before him, a source of comfort. I was sitting next to Emmett, and Dr. K was facing him while doing some dexterity exercises, and behind Dr. K was Brittany waving her arms in the air to silently get my attention. She was pointing to the back of Dr. K's neck, and mouthing for me to look at it. As Dr. K turned around, there was a scar that was a perfect match to Emmett's. I immediately asked about it, and he told us that he was a Medulloblastoma survivor. I had goosebumps from head to toe, and Emmett was wide eyed as he revealed his survival story. It was the story my heart needed to hear, and for some reason, Dr. K being a survivor of the same cancer Emmett had felt like a positive omen.

At this point we were still waiting on a few tests to come back to tell us more about the makeup of Emmett's tumor, as well as which grouping he fell in to. Medulloblastoma has four groups - one and two being lowest risk which are typically benign, four being low risk of the malignant tumors and three being high risk of the malignant tumors. Emmett was ruled out of groups one and two, for obvious reasons. But within each group, there are sub-groups. For example, group three which is high risk has four subgroups depending on the makeup of the tumor, so it could be a high risk tumor, with a low risk subgroup. Or a high risk tumor, with a high risk subgroup. Many, many factors would dictate which group Emmett would fall in to, but we were keeping our fingers crossed for group four. Dr. K told us that with the information he had at the present time, he would be very surprised if Emmett fell in to group three, but he would call us as soon as he received the results.

We finished at Nemours, then got in the car decided to make the three hour drive to Zephyrhills, where my Mom and Dad live, to surprise the girls. For the first two and a half hours of the drive, we laughed and made jokes. We took in the scenery around us, and Emmett had an absolute fit when we went through Orlando and he saw all the Disney and Universal Studios signs. He was fascinated by how much concrete was all around us, and the tall buildings (tell me you're a farm kid, without telling me you're a farm kid). Any time we passed by any body of water, Brittany would joke that there were alligators that wanted to eat her, and Emmett would laugh from the depths of his belly. By the two and a half hour mark, my phone rang and it was Dr. K. He explained to us that the initial results from the tumor biopsy came back, and it was determined that Emmett fell into group three. There was an overall silence in the car. All laughing had ceased immediately, and my mood went from happy to devastated. I asked what exactly that meant, and Dr. K told us that these results were only preliminary, there were still more results to come, and we would review everything at our meeting next week. He was very reassuring, making sure we knew that Emmett's plan was the best plan, and that "we got this". He brought my anxiety level down to a functional level, and wished us a great weekend. My mind raced for a while, and I eventually came to the decision that I wouldn't allow it to drown me until Dr. K gave me a reason for it to. His confidence fed my confidence, and his worry would feed my worry if and when that time came. For now, I was going to have all three of my kids in my arms, and that was all I needed in that moment.

The laughing and joking was back in action as we pulled into Forest Lake Estates, and Brittany called our Dad to come open the gate for us. We drove to the house, and everyone yelled in surprise that we were there. I grabbed my girls and hugged them tight, taking in their smell and their sounds. Never in my life could I have imagined that there would be a time when I didn't know how long it would be before I saw one of my children again, and because of that I didn't take even a single second for granted. I savored it all. We kissed and hugged all our Aunts and Uncles, and some cried silently as they laid their eyes on Emmett for the first time since his diagnosis.

The next morning, I FaceTime'd Jared to tell him about my conversation with Dr. K. He was standing in our kitchen with our nephew Justin, and I told him that Emmett fell into Group three. His face dropped and was as white as a ghost. I had never, in thirteen years of being together, seen a look of fear on my husbands face until that moment. I knew that Jared knew something that I didn't, and I didn't dare to ask. Jared sheltered me from things that I didn't need to know, until I actually needed to know them. There would come a time when I would have to know what Jared knew, and given the look on his face, I dreaded that inevitability.

The next four days were spent doing anything that took our minds off what we knew was coming. We swam, mini golfed, rode the golf cart, played cards and took a drive to visit Mickey Mouse. The kids were so happy, and it was easy to temporarily disconnect from reality when you're in the happiest place on earth.

We made our way back to Jacksonville the next day, and the kids were eager to get there because Daddy was on his way. Jared made the 2,500km trip to Florida with our nephew Justin and his cousin Lyca. Lyca flew into Halifax from Toronto, and Jared and Justin were there to pick her up, then they immediately headed south. It was comforting to know he wasn't doing that drive on his own, and that he could rest while someone else took over the driving. They arrived in Jacksonville on January 7th, and my heart finally felt complete. All five McNabb's under one roof, like normal. We had a full house - Mom, Dad, Emmett, Stella, Rowan, Jared, Brittany, Justin, Lyca, and myself. We all had supper together at Longhorn Steakhouse then headed back home to relax.

The next morning, February 8th, I drove Brittany to the airport. Knowing she wasn't going to be there with us anymore was heart breaking. She is the other half of me in a way no one else can be. She can get me out of complete darkness without saying a word. Her presence is my comfort, because I know that when I can't give all of myself, she makes up for what I lack without hesitation. She steps in when she needs to and I never have to give a second thought to the care our kids receive when they are with her. Emmett missed her terribly, and throughout the two months that followed, he would often bring up something that she said that made him laugh, or would say "Nenen would love that" if he saw something that reminded him of her. This day also happened to be Jared's birthday, and we celebrated with a beautiful dinner and birthday cake to celebrate the man who sacrifices so much, and loves his family with every ounce of his being.

On February 9th, we had an appointment with Dr. K to discuss the plan forward, as well as the last of the results from the tumor biopsy. Walking into Nemours hospital that day was when I knew I would find out what Jared knew, and why telling him that Emmett fell into Group three caused his face to distort in a way that is etched into my memory forever. Jared was visibly anxious, and sweating profusely. Emmett walked in between us, hands and arms coated in numbing cream and wrapped in cellophane plastic in case any blood needed to be drawn. He too was visibly anxious. We were called into Dr. K's office, and in he came with his usual bubbly personality and top notch bedside manner. Jared introduced himself, and they made small talk for a few minutes before Dr. K brought up the fact that he received the final biopsy results. Before anyone else could get a word in, Jared looks over at Dr. K and asks "was there any evidence of Chromosome 19 or MYC Amplification?". My head spun so fast toward Jared that I was dizzy, then back to Dr. K. That was it, the thing he knew that I didn't. I had no idea what it meant, but I didn't ask for fear of missing the reaction on Dr. K's face when he answered the question. Dr. K was smiling from ear to ear when he replied with "no, none at all. Dr. Erker called me with that very good news yesterday". I watched as five hundred pounds of pressure released off Jared's shoulders. He started to cry and his breathing was shaky. He was squeezing my hand, and I finally asked "what does that even mean?". Jared leaned in and told me that he would tell me later. I put that aside, very temporarily, and watched as Dr. K did an examination on Emmett. It was the usual exercises to test his fine motor skills as well as his balance, which the tumor had affected. Emmett was thrilled to find out that he didn't need any needles, and proceeded to rip off all the taped up cellophane wrap that covered his arms. Dr. K reviewed the chemotherapy process with us, and handed us printed out sheets to read with the information for Carboplatin and Vincristine. Carboplatin would be administered every morning, five days a week. Vincristine, he would receive once a week on Monday's. This was our last meeting with the doctor before treatment officially began, and I felt a sense of peace come over me.

We left the appointment feeling lighter. I had been carrying Jared's extra weight, although I had no idea what that weight entailed. We put Emmett in the truck, and Jared told me to wait before getting in. He looked at me, and said "if Emmett had tested positive for either of those things that I mentioned upstairs, he would have had zero percent chance of life after five years". I stopped breathing long enough to have to gasp to catch my breath. This was the information that Jared was protecting me from. He carried that knowledge on his own, knowing that there was a fifty percent chance that Emmett could fall into the high risk subgroup of Group 3, and we would lose him within the next five years. We hugged hard, we cried hard and we thanked God for this victory.

Finally, it was Monday, February 13th. The first day of treatment. I had Emmett up at 7:30am and made him bacon and toast. He was short of breath and terrified. Visibly trembling, and there was nothing I could do or say to make it better. None of us knew what we were walking in to, and it was an incredibly daunting feeling. We got to Wolfson's Hospital at 8:45am for his 9:00am appointment. We were in the waiting room, when a nurse came in and called Emmett's name. I looked at him and he was shaking his head "no". I didn't look at him with sadness like I would have in the past. I had no tears, only determination. I leaned down, grabbed him under the elbow and said what would be my signature phrase for the better part of a year "this sucks and it's unfair, but it's not negotiable". It wasn't negotiable. This is happening, and I would ensure it did by all means necessary. Instead of sadness, I approached him with confidence and encouragement. I validated his fears, sympathized with his worries, and ensured that he knew he could "do this", even when he thought he couldn't.

We got into the room and Emmett reluctantly got up on the bed. He had his knees to his chest and his head buried into his knees. The nurse sat on the bed with him and did her best to calm his nerves, to no avail. There was nothing that would make Emmett even remotely comfortable with the situation he was in, and no way to reason with an eight year old about to have a three quarter inch needle inserted into his chest with the goal of administering chemotherapy. By the thirty minute mark of a stiffened Emmett refusing to lower his knees, we had to do what was necessary to make it happen. This was the first time I had to essentially lay on top of Emmett so they could access his port. Due to his flailing limbs, he managed to get one good punch into my cheek before we successfully held him down long enough to access him. I didn't take it personal, frankly I'm surprised he didn't swing harder. Then it was over. He put his head back, silent tears still flowing down his face, and kept saying "I'm so sorry, I'm so sorry, it didn't even hurt that bad I'm so sorry, I'm so sorry". Nurses were excusing themselves with tears in their eyes, and Jared and I sat with Emmett and hugged him saying how proud we were of him. He popped his headphone on, grabbed his iPad and relaxed. The hard part was over.

Jared went and grabbed us Starbucks, which became a daily ritual. I was sitting down next to Emmett when two nurses came in the room, fully dressed in gowns and gloves, carrying two bags of chemotherapy. They were protecting themselves from the toxic medicine that was about to be put into an IV and pushed into my sons body. One nurse hung the medicine and connected it to Emmett's port, and read off the information on the bag while the other nurse confirmed the information on his chart. Once that was confirmed, they hit "run" on the pump. I watched as the chemo made it's way through the line, and finally into his chest. I let out an audible sigh of relief. The tightness in my chest lessened, my jaw unclenched, my shoulders relaxed and my lungs filled with my first full breath of air in a long time. The beast was being challenged.

They flushed his port with saline, disconnect the lines and we were free to leave to make our way to the proton clinic for Emmett's first radiation treatment. They left his port accessed, and would until he was done treatment for the week on Friday. While he was accessed, he was not allowed to get his port wet whatsoever. This would be the routine for the next six weeks - access on Monday, shallow baths only during the week and de-access on Friday. The proton clinic was a twelve minute drive from Wolfson's Hospital. We walked into the clinic, and Emmett walked over to the computer to scan his badge, letting the technicians know that he was there for treatment. The technicians would always come out and walk directly up to the kids, and in some special way, make them look forward to taking that walk into the treatment room. Emmett was gone for forty minutes at most each time, and we were never allowed to go back there. It never bothered Emmett to go back without us.

The first day was over. We got a taste of our routine for the next six weeks, and Emmett was in surprisingly good spirits. From speaking with doctors, we knew that it wouldn't be long before he would start to feel the affects of treatment. He had hours at most, but he was insistent on leaving the house to go do something. He chose mini-putt, and the word "no" was not in our vocabulary at this point, so off we went. We got on to the course, and by the third hole Emmett was vomiting. Immediately after, a headache. We got him back in the truck, and within seconds he was crying telling us he wanted to go to bed. Soon after arriving to the house, Emmett crawled into bed and was asleep by 5:30pm, and slept until 7:00am the next day.

And so began our new purpose - getting Emmett to and from his cancer treatments with the goal of saving his life. The same routine five days a week for six weeks. Each day came with a new side effect of treatment, anything from fatigue, headaches, sore legs, appetite suppression, vomiting, anger and irritability from steroids, joint pain, etc. Learning how to navigate this life was a challenge, and knowing when to elevate an issue and when to wait it out was a huge learning curve. The first week was just that, learning. We learned which foods he could tolerate, which activities would trigger which symptoms, how long he could walk before needing to rest, which situations triggered his anxiety attacks, etc.

In spite of all the lousy side effects, Emmett was usually wanting to go out and do something. We spent a lot of time at the beach, searching for alligators, going to the arcade, walking to the park, going to Target, playing mini golf and making memories with our new family. Other days, he chose to sit on the front step and build his LEGO or sit at the table and watch his iPad. Our schedule was Emmett's schedule, and our daily plans were decided on a whim based on how he was feeling day to day. By all intents and purposes, Emmett's side effects were routine and anticipated, and nothing out of the ordinary meant that he was tolerating treatment exactly as he was supposed to.

We woke up on February 27th, exactly two weeks to the day since treatment started, to a new symptom. Up until this point, Emmett looked like a normal eight year old boy. To look at him was to think that he was perfectly healthy. Unless you knew him, you wouldn't know he was sick. The one symptom we were on pins and needles to see appeared, literally, overnight. Emmett's pillow was covered in hair. I stared at it in disbelief. It was one of those situations that you know is coming, but nothing can prepare you for the feeling you're overcome with once it arrives. I felt numb, and I knew that from that point forward, everything would be different. People were going to stare. They were going to look at him with sympathy and sadness in their faces, and I didn't want that for him. They don't know his strength, bravery, perseverance and determination. They look at him and only see a sick child. I tried so hard to protect him from the emotions of others, for fear of him absorbing those emotions and losing his determination to fight. I could no longer do that - instead I had to teach him how to internalize and work through the emotions of others in a way that wouldn't manipulate his own.

We sat Emmett down and explained to him that his hair would start falling out quite quickly, and if he wanted me to shave his head, that could be an option. He was adamant that he wanted it to fall out naturally, on it's own. We left the decision up to him, and went on with our usual day.

Two days later, Emmett's head was covered in bald spots, and it was getting increasingly hard for Jared and I to accept that he wanted it to fall out naturally. Every now and then we would stare at him, then at each other, shake our heads with a smile and say "Good Lord, we need to do something about his hair". It was humorous by that time, and whenever we brought it up, Emmett would laugh and say no, undoubtedly because he knew it was eating us alive. He would sit down and continuously pull it out and drop it on the floor, no matter where we were. Emmett's DNA is scattered all over Jacksonville.

When we got back to the house that day, I asked Emmett to lean over the sink so I could wash his hair. All part of my master plan. I scrubbed his scalp and the hair was falling out in chunks. By the time I was done, he looked like an eight year old with male pattern baldness. He looked in the mirror and started laughing hysterically, then we all started laughing. Within minutes he looked at me and said "okay, you can shave it". I jumped up and took off out the door to CVS for some clippers before he could change his mind.

We put a garbage bag over him so he didn't get any hair in his port or g-tube, and I started buzzing. I cried silently with each pass over what remained of his hair. To me, the bald head made it official. There was no hiding it anymore. I could no longer look at him and pretend, even for second, that he was just a normal child. Emmett had cancer, and the last shred of what once was normal was ripped from under me.

Up Next: Chapter 8 - Jacksonville Part 2