Chapter 6: Cancer

** Warning: This chapter contains pictures of incisions and medical implements **

The next morning, January 13th, I woke up in the ICU and could feel eyes on me. I looked over and Emmett was burning a hole through me, only with less "I will cut you if you look at me the wrong way" in his eyes. He was noticeably less angry, and it was heart warming to see my calm and docile Emmett coming back to me. Jared came in with coffee and breakfast, and Emmett's face lit up when he walked in. Jared would ask Emmett a question, and we were lucky if we got one word answers out of him. We were encouraging him to use his words, and quickly realized that it was the Nasogastric (NG) feeding tube in his nose and fed down his throat that was deterring him from speaking. He hated the way it felt when he spoke, and therefore declared that he was on a speaking strike until it came out. The deal was, the more he ate, the faster it came out. The ball was in his court.

By 8:30am, the two Neurosurgeons had come into the room and were visibly taken aback to see Emmett sitting up in his ICU bed, with no ventilator. They stood at the door, shaking their heads with the look of amazement on their faces (this would be a reoccurring look in the weeks to come). They told us that after a surgery of that magnitude, it is not typical to see children breathing on their own less than twenty four hours post surgery. Emmett's breathing tube lasted all of two hours once he got into the ICU. As we were speaking, two more people walked into the room who we had yet to meet. They introduced themselves to us as Kelly, a nurse from the brain tumor clinic, and Doctor Craig Erker, Oncologist specializing in brain tumors. Although deep down I knew what we were dealing with, shaking the hand of an Oncologist solidified the fact, and it took everything in me not to fall over from all the stars I was seeing. I was handed books on Medulloblastoma written by the Children's Oncology Group, and we were told that discussions would be had in the days to come regarding Emmett's treatment once we got official reports back from pathology. At this point, we knew with absolute certainty it was cancer, but had to wait for specifics before a treatment plan could be put in place. At that time, we were told that once pathology reports were back, that treatment would happen fast. The focus right now was ensuring Emmett would recover appropriately from surgery.

While Jared and Dr. Erker, a Saskatchewan native who knew where Castor was, talked about anything and everything, from 3C's Minor hockey to which studies Dr. Erker would send Jared to read up on, I went back to Emmett's bedside. Dr. W and Dr. M were examining Emmett, and were encouraging him to speak by asking lots of questions that he had no choice but to answer. He told them that things looked "bouncy" when he tried to focus, but he was assured that his vision would slowly come back to normal as the medication wore off and the swelling in his brain lessened. Emmett then vocalized that he didn't want to be in the ICU anymore, and wanted to go back up to his room on the seventh floor. The doctors looked at each other, and after a few moments of contemplation, they decided that he was stable enough to leave the ICU.

Before leaving, a team of doctors came in to talk to us about sending Emmett's tumor away for an in depth analysis on it's makeup, which would tell us exactly how to treat his cancer most effectively to give us the best possible outcome of a 100% cure, and well as contribute to a study to learn more about treating Medulloblastoma in children. We were all for it - without the ability to study these diseases, treatment can't advance. We learned that Emmett's blood would have to be taken at two separate times, and had to be within a specific time period. This is a detail to remember as you read on...

Our nurses from the seventh floor came to get us, and took us back up to our room. At this point, Emmett's brain wasn't absorbing any Cerebrospinal Fluid (CSF), and the drain was doing all of the work. The drain was gravity fed, and there was a laser level that had to be level with the center of Emmett's ear at all times once his brain started to be introduced to CSF again. Even if he shifted up or down on the bed an inch, the level had to be readjusted.

Once we got Emmett settled, Jared left to go grab the list of things that we needed, and my Mom and Dad (known as Nana and Papa from this point forward) came in for a visit. Emmett would fall asleep off and on, and was quickly overcome with boredom due to the fact that he wasn't allowed to look at any small screens up close for another twelve hours. By 3:00pm, Dr. W came in and lifted the drain to begin the process of Emmett's brain absorbing a small amount of CSF. This was the first step toward the next phase of care.

Emmett, in all his stubbornness, was still dedicated to his speaking strike. That was until, Jared came back in the room a few hours later with a matching haircut and a 50" Samsung smart TV (he deviated from the list I gave him). He smiled as big as his pride would allow. Papa set up the TV for us, and with permission from the team, we put a movie on for Emmett to watch for an hour.

The day consisted of rest, drain adjustments, vital checks and forcing Emmett to ingest small amounts of liquid and food. We would fill a 5ml syringe with Gatorade and give him small bits of crackers or apples at a time, much to his dismay. His cousin Olivia came to visit, and brought him a little triceratops, which nurse Sabrina suggested be named "Cheeto", because of his bright orange color. Cheeto would become a vital part of Emmett's comfort throughout the months that followed. The other thing you would rarely find him without was a stress ball. This was the comfort of all comforts for him. He fell asleep with it in his hand, woke up with it in his hand and as long as he was laying in his bed, it was in his hand during the day. At one point, he had six stress balls on his bed and within his grasp. As one lost its "squishyness", as Emmett called it, another would replace it. These were introduced to him by Mandy, our Child Life Specialist that was assigned to us while on seventh, who is an angel walking on earth. There is not enough money in this world to compensate anyone in that profession for what they do for our children. More on Mandy soon.

Brittany and Olivia left to go to hockey, Mom and Dad left to go home with the girls, and Jared and Shawna left to go home and check on things at the farm. Then it was just me and Emmett. The rest of the night was relatively uneventful. We watched a movie, then went to bed.

The next morning, January 14th, Eugenia and Sabrina came in and wanted Emmett to sit up on the side of the bed. We needed to keep him moving to prevent bed sores and blood clots, and to allow him to regain his strength. We also needed to see how the surgery may have affected his equilibrium, so getting him moving, to the point of walking, was very important.

They clamped his drain, which had a time limit of thirty minutes before he had to be back in position and have the drain unclamped. He was very anxious at the thought of moving, because in his mind, it was going to hurt and the incision at the back of his head was going to split open and bleed. They supported him at his back, and lifted him up and turned him so he was in a sitting position on the side of the bed. He LOVED being able to sit up. That simple task was pivotal in his ambition to recovery. He stayed up for 15 minutes, then it was back into bed.

We kept up with the syringe fluids every half hour, but getting him to eat was still a chore. The feeling of the tube in his throat whenever he swallowed or spoke was extremely uncomfortable for him. When I would ask him a question, I was met with "Mmm-mmm" for yes and no, the look on his face and the tone of the sound were the only differentiating factors between which response he was giving me. I was growing increasingly frustrated the more he refused to communicate with me, so my voice got stern when I said "Emmett, you're not helping yourself by not eating. You're going to lay in that bed with that tube in your nose and you're the only one that can control it coming out. Now tell me what you want to eat!". His eyes shot up at me with equal frustration, and I imagined exactly what he wished he could tell me to do - I'll let you use your imagination on that one. He dropped his stress ball and lifted his hand. I looked down, and he stuck his index finger out and pointed to his bright orange triceratops. Cheeto. Emmett wanted Cheetos to eat. I looked up at his face and burst into laughter. I was laughing so hard I was wheezing. Emmett couldn't contain himself and started smiling too, although he tried his hardest not to. He had made a joke for the first time in a while, and I got to see a glimpse of my sweet boy who was buried under a layer of frustration and confusion. I contained myself, kissed him, asked a nurse to come sit with him and went to get the largest bag of Cheetos I could find.

Emmett ate a bowl of Cheetos throughout the day, and a few slices of apples. They got him up again to sit on the side of the bed around 6:30pm, and this time Brittany was there. She gave him a massage as he was sitting up, and the rest of us looked on with envy as his head bobbed up and down with relief.

He stayed up for twenty minutes this time, and we were able to give him a wash and brush his teeth for the first time in forty eight hours. After that, we tucked him back into bed and settled him for the night. Britt and I ordered sushi and watched a movie. I stared out the window to the same familiar view that I had been staring at on and off since December. I laid there trying to make sense of everything that had happened up to that moment. There was no angle in which my mind could twist to that could rationalize why this was happening to us. Was it something we did? Did we expose him to something that we shouldn't have? Was this genetic? Do either Jared or I carry something that we have passed on to him? Was this bad luck? I had so many questions come to surface the more I was able to process what had happened. The truth was though, that a child having cancer can never "make sense". There is no possible scenario in which it can be justified or rationalized. Once I came to that conclusion, I felt as though I became more accepting of our situation. Then I remembered a phrase I heard years previous - "It won't always be someone else". We were learning that first hand, in the worst way possible. No longer would I drive by a Children's Hospital and think "thank God we don't have to be in there", or see a post on social media about a sick child and think "thank God that's not my child". Our reality was that it wasn't someone else, it was us. It was our turn to fight a battle, and I had to be ready to carry Emmett through it.

The next morning, January 15th, Dr. W came in and raised the drain again to allow Emmett's brain to absorb even more liquid. So far, it was going very well and both neurosurgeons were happy with how he was progressing. In fact, they were so happy with how well he was sitting up, eating and drinking, that they approved the removal of his feeding tube and catheter. Emmett was elated, and handled both tubes coming out like an absolute rockstar. His mood immediately improved, and he was eating non stop. Eventually, our room started to look like a freshmen teenagers dorm room - gaming systems and pizza boxes galore. Only they were not teenagers, they were an eight and forty five year old. Side Note: I find it necessary to point out that he didn't only eat fast food and junk. We fed him fruits and vegetables - promise.

Jared and Shawna came back from checking on the farm, and as we were sitting down in the room visiting, two people in white lab coats came in - they needed Emmett's blood. Remember those two blood draws they needed as part of the study and analysis for Emmett's tumor?

This was blood draw number one. Emmett was instantly anxious, which was only made worse by the fact that the one lab technician had to try twice to obtain any blood, and didn't succeed. Another technician had to be called to come up to our room, and if you were anywhere on the seventh floor at that time, you heard Emmett screaming. We had to physically restrain him, and thankfully the second technician that came up was able to successfully retrieve blood. Watching him go through that was devastating. Jared and I made the decision that we would not support putting him through that agony again, and that they would need to find an alternative way to get his blood, whether it be through an existing IV or sedation.

When the time came that day for the second blood draw, we stood our ground. However, we were against the clock. The blood needed to be taken before a specific time, and that time was creeping up fast. While in the middle of a conversation with one of the nurses, Dr. W came into the room and asked to speak with Jared and I in private. We went into the family room, and Dr. W said "I understand there are some issues with getting blood from Emmett", we replied "yes, we are not in support of putting him through that trauma again". Dr. W leaned forward, and said "Emmett is going to have a really, really, really hard year. It is not going to be fun for him. There are going to be tests that he has to have done and treatment that he is not going to like, but he doesn't have a choice. You as his parents need to prepare him for that, and not letting us do what we need to do to is not helping him". It was the slap in the face with reality that we needed. We thought we were protecting him, but we were doing the exact opposite. Looking back, it is sort of an oxymoron. As parents we protect our children from harm at all costs. We do our absolute best to prevent them from pain and suffering, and here we were being asked to sit back and allow pain and suffering to come to him. Given the alternative, we went with the devil we knew.

When we got back to the room, Emmett was sitting up in his bed. The look on his face was sheer panic. He knew what was coming, and he was ready to fight with every ounce of energy he had to ensure it didn't happen. Mandy, our child life specialist, was in there to help with distracting him, and Emmett was having none of it. He was screaming to the top of his lungs "WHY ARE YOU DOING THIS TO ME?", "DON'T LET THEM HURT ME", "THIS IS TORTURE" as he watched the lab technicians in white coats prepping needles. I was trying to stifle my sobs, and Jared was growing increasingly more frustrated with every scream. When Jared, as a father, sees that people are trying to help his son with cancer, and said son isn't allowing them to, it is hard to handle. As a mother, I was prepared to hold him down in order to get the blood, because I'll be damned if I didn't do whatever I could to assist in curing my child from cancer. Just as the lab technicians were ready to draw his blood, a nurse came in and said she wanted to try and retrieve blood from the IV he had in his arm, but at the end where the needle was under the skin and not at the catheter portion that hooks up to the tubes. This meant no poke, but Emmett didn't care. He was so deep in his anxiety attack that he didn't want anyone within ten feet of him. There was no reasoning with him, and that frustrated Jared even more. Jared and I were so worked up, that I physically pushed him out of the room and closed the door behind us. He and I being in the room wasn't helping the nurses to get his blood. In that moment, I felt that Emmett thought the more he screamed, the more likely we were to step in and make it all stop. Shawna was in the room with him and I trusted her to handle it. After about five minutes, the room went silent, followed by cheering. As we reached for the door, a nurse ran out with a vial of blood and gave it to the other nurse that was waiting to send it away. We walked back into the room, and there was blood on the floor, pillows and walls. They were able to get blood out of his IV, but when they disconnected the catheter, blood came pouring out, and the more Emmett moved, the more it flew around the room. But, the mission was accomplished, and we prayed to God that he would grow more and more tolerable of blood work as time went on.

The days following consisted of healing Emmett from surgery. Every time the doctors came in, they were thrilled at how he was progressing, and we often saw that familiar "I can't believe it" shake of the head as they stared at him in amazement. He was getting up and walking as much

as he could, and preferred to sit up in the chair for most of the day if he was allowed. We found out that the majority of kids with Medulloblastoma, once they have had their surgery, are more often than not bedridden for upwards of a week post surgery. Seeing Emmett in the state he was in was just another example of his resilience and determination to beat this disease.

Throughout the week I was able to step away from the hospital a few times to go for supper with Shawna and Britt, and Shawna stayed with Emmett one night so Jared and I could go to the hotel and sleep in a real bed with real pillows. Nana and Papa were holding down the fort at home with the girls

and farm, and our neighbors helped with

feeding animals and daily farm chores. It took a village, and our village was the best there is.

On January 19th, a Radiation oncologist by the name of Dr. Rutledge came in and asked to speak with Jared and I in the conference room. The pathology report came back, and confirmed what we already knew - Emmett had cancer. Now that we had an official diagnosis, it was time to discuss treatment. Emmett would need a six week round of radiation, that would consist of radiation to the brain and spine, five days a week. While receiving radiation,

he would simultaneously receive his first round of chemotherapy. At the end of his information session, he finished with "and the radiation will happen in Jacksonville for at least half, if not all, the six weeks of treatment". Jared and I looked at each other, then back at Dr. Rutledge. Jared said "you mean Florida?". He responded with "yes, Jacksonville Florida". Because of Emmett's age, conventional photon radiation was too broad of a target, and there would be a greater risk of damaging healthy tissue during the process, which could cause serious issues developmentally as he gets older, as well as a larger risk of other forms of cancer developing in the future. Emmett would need proton radiation, which can target cells the size of the tip of a pencil. The only problem being, Canada doesn't have a proton radiation machine. Jared said to Dr. Rutledge "okay, we'll need some time to come up with the money, because we're not rich people", to which Dr. Rutledge explained that the hospital would send all of the information on Emmett's required treatment to MSi (Nova Scotia's health insurance), and the province would cover the costs associated with treatment. He informed us that Emmett's case is very time sensitive and we would need to be in Florida before February 1st. My mind was running at a hundred miles an hour as I tried to process all of that information. It goes without saying that we would have sold everything we owned to pay for the treatment, but to know that it would be covered by the province was a load off of our shoulders.

Dr. Erker came in to talk to us immediately after we finished with Dr. Rutledge. We discussed his chemotherapy treatment protocol, which would include a portacath being inserted into Emmett's upper right chest, and a gastronomy tube (g-tube) into his stomach. A portacath is a "chamber" that sits under your skin, with a catheter attached that is fed into a large vein close to your heart. This is the best way to distribute chemotherapy most effectively through your body. The g-tube in required for 100% of medulloblastoma children, as the type of chemotherapy required for treating it completely suppresses appetite. Emmett would need both of these things put in prior to leaving for Jacksonville. That surgery date would be given to us as soon as travel plans were solidified.

Up to this point, we still hadn't told Emmett that he had cancer. The only thing he knew about cancer, was that it killed the actor who played one of his favorite super heroes, The Black Panther. Jared and I both agreed we were not equipped to have that conversation with him on our own, so we asked Mandy a few days previous to sit down with us when the time came and help us to have the conversation in a way that Emmett can best understand. Now that we had his official diagnosis, the time was here. Mandy was able to get him to open up about anything he was feeling better than we could. She did activities with him that released his stresses, eased his mental anguish and lifted his spirits. He was instantly comforted by her the second she walked into a room, and there was no one more perfect to have in our corner than her.

We were able to track Mandy down shortly after talking to Dr. Rutledge, and as a group decided that we would have the cancer conversation with him in two days, on January 21st.

We got back to the room from speaking with Dr. Rutledge and Dr. Erker, and Emmett was sitting peacefully playing his Nintendo Switch. Dr. W came in not long after to do his daily assessment. Emmett's brain was taking on the majority of the cerebrospinal fluid, with little help from the drain. Dr. W decided to clamp the pump completely and see what happens. Emmett, Mandy and Shawna went for a walk to do a scavenger hunt, and I started my research on Air B&B's in the Jacksonville area closest to Wolfson's Children's Hospital, Nemours Children's Health and the University of Florida Health Proton Therapy Institute, the three places where Emmett would be receiving his treatment. Jared was busy updating family and friends on the newest treatment plan. When Emmett arrived back from his walk, he got comfortable back in his bed, and Shawna and I sat beside him to play Yahtzee. I looked over at Emmett, and he had a bulge on his forehead under his bandage where the drain was that was soft to touch, and his face and neck were wet. I knew right away that it was CSF building under his skin. We ran and got the

nurses, and they unclamped the drain to relieve the buildup of fluid. Dr. W came in, and said it was likely too much all at once to clamp the pump completely, so they opened it back up and set it to the height it was that morning. They wrapped Emmett's head with a compression garment to stop more fluid from building up under his skin, and we left the drain alone for the rest of the day. Fun fact: Cerebrospinal fluid is sticky.

The rest of the day was spent taking short walks, playing Mario Kart, watching movies and naps. We were assigned a Social Worker, Doug, who helped me to get everything arranged to get to Jacksonville. After much discussion, we decided that my

sister would fly with Emmett and I to Florida, and Jared would drive our vehicle a week later after our nephew flew in from Alberta to take care of the farm. Thankfully, my parents have a house in Florida just outside Tampa, and they would fly out with the girls the day before us.

It didn't take long to realize that even though the province was going to pay for his treatment, we were about to embark on a necessary, but expensive journey. Up to this point, people had been sending us Skip The Dishes and Uber Eats gift cards, e transfers to help with fuel going back and forth to check on the farm, and general expenses that come with having a sick child. The idea of a GoFundMe was brought up by many people, which we were opposed to in the beginning. This was something we thought we could do on our own. Not because we didn't want people helping us, but initially it just didn't seem necessary. Then we thought back to times when we wanted to help other people in similar situations, and donating to help ease their financial burden was a way in which we could do exactly that, when there were no other options. So we agreed to the GoFundMe. I need to be very clear when I say this next part - if not for that GoFundMe, and the incredibly generous people who helped us, no matter what denomination of money, you were responsible for lifting the spirits of a boy going through cancer treatment, by providing his parents with the financial means to take his mind away from treatment whenever possible. You gave him experiences that in turn made memories that will last a lifetime. You fed us, clothed us and got us to and from hospitals to give our son the best possible chance at survival. YOU did that, we just drove the car. There are not enough ways to say "thank you" for what you have all done for us. We are indebted to so many, and will work for the rest of our lives to give back in your honor on behalf of #teamemmett.

Before the day was over, the other Neurosurgeon who operated on Emmett, Dr. M, came in to see how he was doing. The bulge on his forehead was gone, but we were reaching the deadline for how long the tube could be in. They didn't like to see it in for any loner than seven days, and we were currently on day six. Dr. M decided that Emmett would be taken into the OR first thing in the morning, and the tube would be removed. The risk with removing the tube was that his brain wouldn't sufficiently filter the CSF through the chamber in his brain and down through his spine, and if that happened, he would need to go back into the OR to have a shunt put in, which is a tube that would be placed in his brain to create a pathway for the fluid to flow efficently. If his brain resisted filtering, we would know within the first twenty four hours, as it would cause consistent vomiting and headaches. If he didn't show any consistent symptoms within twenty four hours, he was in the clear. Emmett was nervous to go into surgery again, but even more excited to have one less tube hanging out of him.

The next day, January 20th, Emmett was prepped for surgery and taken down to the OR at 9:45am, and surgery was underway by 10:30am. This was a quick one - he was in and out in just under an hour. Then, it was time to start the clock. As each hour went by, we breathed a little easier. After a much needed nap to sleep off the sedation, Emmett was, quite literally, bouncing around his hospital room. He was shooting nerf darts at Jared, and spraying the nurses that walked into his room with his make-shift IV catheter-turned- squirt gun that Mandy made him. Not once did we tell him to calm down or stop shooting nerf bullets into Jared's eyes. For the first time in a long time, Emmett was Emmett. He was an eight year old again. For the first time in a long time, my tears were that of happiness rather than sadness.

By the seven hour mark, Emmett had only vomited once, which we attributed to acting like an Orangutan for over an hour. We ordered some supper, gave him an actual shower for the first time in over a week, then went to bed.

By 8:30am the next day, January 21st, Mandy was at our door. It was time to have the cancer talk. Mandy pulled up a chair next to Emmett's bed, and Jared and I sat next to each other, holding hands and shaking as we were fighting back tears. Mandy had the floor, and Jared and I sat in silence as she talked to Emmett about having cancer in a way that we never, in a million years, would have been able to do. He was attentive and understood everything she said. He engaged in conversation and asked questions about his cancer. In true eight year old fashion, when we told him that we were going to Florida for two months his first question was "can we go to Disney?". Our response was "Dude, we can go wherever you want!". The conversation went better than Jared or I expected, and it was a massive weight off our shoulders to not have to worry about someone coming into his room and bringing it up without him knowing the full details. We made the decision in the beginning to be completely transparent with Emmett. He had to know what we knew (within reason), so that he wasn't surprised by any conversation he overheard. If you know Emmett, you know how his mind works. You know how intelligent he is, but mostly how incredibly perceptive he is. He analyzes everything to make sense of it, and if he hears it, he asks. If he feels you're not telling him the whole story, he figures it out on his own. He was in for a very rough year, and needed to be prepared for every aspect of it. The good, the bad and the ugly. And ugly, there was.

Mandy also came prepared with a stuffed bear named Logan. Logan was equipped with a Portacath and a Gastrostomy Tube (g-tube) button. Looking at Emmett's face, you knew that he knew where she was going with this, and didn't like it. She told him that he would need both of those things, and went through each one step by step on how they worked. She let him access Logan's port on his own, and inflate and deflate the bubble on the g-tube. She showed him how to connect the extension to the button to start a feed, and before long he was doing that on his own as well. Seeing those things, and letting him know what to expect, made the idea of having them a touch more bearable.

We had reached the twenty four hour mark post drain removal with only one vomit - Emmett officially did not need a shunt! We were all so happy. One more hurdle conquered. Plans were easier to arrange now that I could talk about his diagnosis freely. I continued with that while Jared and Emmett watched a movie in between Emmett bouncing around the room . I was planning to leave for Cape Breton to make it for Stella's fourth birthday party, that my sister completely planned for our sweet girl, but had a few things to do first. As Emmett was in between bounces, Dr. M walked into the room to see how he was doing. His face a notable "are you kidding me?" as Emmett was mid jump onto his bed. He gave him a look over, and decided to take his bandages off to allow his incisions to heal uncovered. He was very happy with how they looked, and even happier with how Emmett recovered after the drain was removed.

There were his battle wounds, in all their beauty. I looked at them with a sense of pride, because the outcome could have been radically different, but it wasn't. He conquered that hurdle, and wasn't letting it take away who he was. As each tube, needle and bandage were removed, he was back to being authentically Emmett, scars and all. Emmett: 1, Tumor: 0.

Before Dr. M left the room, Jared asked a bold question, to which I fully expected the answer to be "no". He asked if we could take Emmett out for a few hours to get some lunch and walk around the city. To hear "I don't see why not! I'll make sure the nurses know you're going out on a day pass", was the best thing we had heard in a long time. Emmett's eyes were beaming with happiness. I got him some clothes, Jared and I got ready, and we were out the door within thirty minutes, prepared with bandages, pain medication and the ever trusty vomit bags. When we got to the truck and asked Emmett where he wanted to go, it was no surprise when he said "the fish store". I texted my cousins Ryan and Gilles to tell them we were coming, and off we went.

My cousin Ryan owns and exotic fish shop in Sackville called Living Reef Aquariums, and it is one of Emmett's favorite places to visit. We must have spent an hour in there while Emmett took his time to look at all the fish and coral, with Ryan and Gilles right behind him answering every question he had, and making sure to show him the coolest fish and coral. Then we went next door to their other store, Chasin' Tides Tackle Shop, to see all the equipment that he was going to fill his tackle box with this upcoming summer.

We finished up at the stores, then headed downtown Halifax for some lunch. Emmett ate a big plate of chicken fingers and fries, then half of my fish that I ordered. We decided that after lunch, I would head to Cape Breton for Stella's party, and Jared and Emmett would be bachelors for the night. I dropped them off at a museum downtown, and left for Cape Breton.

The entire drive home, my heart was racing. It was the first time I had been more than a ten minute walk away from him since we found his tumor, but my girls needed me too, and since this was now our life for the foreseeable future, a balance needed to be found.

I arrived at my Mom's house in Louisdale, which is where the girls were. I walked in, and they both ran to me, hugged me tight and didn't let go. I couldn't control my tears. As much as they needed me, I didn't realize how badly I needed them. Hugging them felt like my once normal life, and it comforted me. But normalcy was nothing but an illusion to me now, and that feeling came over me within seconds of hugging the girls. I needed to explain to them what was happening, in a way that they would understand. Rowan was too young to "get it", but Stella was old enough to comprehend that her brother was sick, and we needed to go away to help him feel better. It didn't take long before she was telling people that her brother had cancer and needed help in "Flowida". But let's be honest, while she knew her brother was sick, as far as she was concerned she was embarking on a two month long vacation to live her best life in a tropical climate. I hugged my grandmother and grandfather, who were eighty eight and ninety seven at the time, and since it was the first time I had seen them since Emmett's diagnosis, it was an emotional reunion. My grandmother wanted to see all the pictures I had, and was comforted to know how amazing he was recovering. We went to bed, and Stella fell asleep holding my hand with her head resting on my shoulder.

The next morning, I drove home to check on the farm. Our neighbors-turned-family, Angus and Joanie, came over for a visit to bring Stella her birthday present. I gathered up some more stuff that Emmett wanted me to take to the hospital, then we headed back to Louisdale. My sister had the house decorated so beautifully, and she, my mother and grandmother had a delicious supper made. A bunch more Aunts, Uncles and Cousins showed up to celebrate our sweet girl, and as each person came in to hug me, I got more and more overwhelmed. Everything I did suddenly came with a feeling of guilt.

Eating the food Emmett loves, hugging family members Emmett loves, seeing his cousins playing together that Emmett loves... all of it. Being witness to it all felt like I was betraying Emmett. Why was I allowed to be here when he wasn't? I know how irrational that sounds, but convincing me of that at the time was something no one dared to do, and I was incapable of realizing it on my own. I put on a smile, and occasionally cried in someones shoulder (shout out to Courtney xo). After she opened her presents, I had to leave. I had been receiving selfies from Jared of them having a blast on their own. I knew he was in perfectly capable hands and being cared for and loved to the fullest extent, but that knowledge didn't so anything to lessen my anxiety. The longer I was away from him, the shorter my breath got. I kissed the girls, with the promise of coming back in a few days, even if it was just for the day.

I was on the highway by 8:30pm, and drove straight to Dunny's house. I arrived around 11:30pm, Dun and I had a quick visit, a glass of wine, then went to bed. I was at the hospital by 8:30am the next morning, and Emmett was still sleeping in his dorm room, I mean hospital bed. Jared was sitting up looking at his phone. Once everyone was up, we had some breakfast, and cleaned up for the day. Dr. W came in for his morning checks, and as he stood in the doorway he said "why are you still here?!". On January 23rd, after the entire team was consulted, we were given permission to go home for four days. We all looked at each other, and Emmett shouted "YES!!!!!!" to the top of his lungs. Emmett needed this. He needed his house, his bed, his things, his family... everything that was his. He needed a few days to be an eight year old. Jared and I needed our whole family under one roof. We shared the news with family, and started packing up the room that had accumulated an insane amount of stuff, including a big screen TV, dozens of LEGO sets that were shipped to the hospital by various family members, board games, etc. It took us five trips to and from the truck to take it all down.

Emmett had a dentist appointment to go to before we were able to leave. Since the mouth can be a source of infection, they had to make sure that all potential cavities were filled prior to starting radiation and chemotherapy. While I was with him at the Dentist, Jared met with a general surgeon who was going to insert Emmett's portacath and g-tube. He was booked into the OR for 9:30am on January 27th. While at the Dentist, they found that he had a tooth that was a high risk for potential abscessing, so they made the decision to pull it. That would be done, along with a thorough cleaning, while he was in the OR.

We finished up at the Dentist, and by 4:15pm, we were walking out of the hospital and making our way home.

We arrived home at 7:00pm, and were greeted by our family, supper on the stove and a clean house. Stella held up a "Welcome home" sign, and Nana and Papa had set up the ultimate surprise for Emmett.

We walked upstairs, and he opened the door to his brand new room, completely renovated with a new desk, shelves for LEGO, wall decor and toys. Inside the room waiting for him, was his best friend in the world, and cousin, Landon. Those two are inseparable at the best of times, and this was the longest they had been away from each other since we moved to Nova Scotia. It was an emotional reunion, and exactly what Emmett's heart needed. We visited with family, then got all the kids to bed. Crawling into my own bed after sleeping on hospital beds for so long was like sinking into a cloud. With the baby monitor on full volume, and the other end pointed at Emmett, I slept soundly.

I had three days to prepare to leave my home for two months. We went for hair cuts, made doctors and dentist appointments for the rest of us, filled prescriptions, got the truck detailed and tires changed back to summers, made arrangements for the animals, made arrangements for round the clock care for feeding livestock, took the kids to see family before leaving and pack for a family of five - two leaving on one flight one day, two leaving on a different flight the next day, and one driving a week later. I worked with Doug, our Social Worker, to get flights booked so Emmett could be listed as a medical passenger, we got our Air B&B booked and a car rented until Jared arrived with the Yukon. I had all medical documentation in order for going through Customs, passports and health cards separated to give to my parents for the girls, and updated our insurance for travel outside of Canada. Emmett spent his time building LEGO after LEGO and proudly displaying them on his shelf.

It was an absolute whirlwind, and before I knew it, all bags were packed and we were out the door heading back to the IWK for the next phase of our journey.

We were on the road by 6:00am, and Emmett was in surprisingly good spirits. We talked a lot along the way about what treatment might look like, and how whenever we could, we would do lot's of fun things. He was looking forward to seeing palm trees and alligators. We arrived at the hospital, and were taken back to our same room on the seventh floor, only this time with a lot less stuff and it smelled less like pizza and apple juice. Within a few minutes, they were taking us down to the day surgery floor. Emmett's nerves started to get the best of him, knowing full well he was going to have an IV put in. We were hoping they would be able to give him the gas mask before doing the IV, but because he had vomited that morning, it was best to have the IV put in before hand to administer anti-nausea drugs, as the gas can make the nausea worse, and he would be at risk of aspirating. Emmett didn't care about the reason, he just knew that he was getting a needle and was not okay with it. They ended up having to give him an oral sedative, then took him into the OR without us, because just like the bloodwork I wrote about previously, it was likely that us being in the room was making his anxiety worse.

The surgery lasted three hours from start to finish, and he was taken right back to his room on seventh where we were waiting for him. Cranky Emmett was back, and adamant that he could walk from the stretcher to his bed. To appease him, the nurses lifted him out of bed, and with his feet dragging, he "walked" to his bed. Once he was settled, he looked up at me and said "told you I could walk", and I simply smiled and nodded.

Seeing his portacath and g-tube was a shock. It took my breath away. Much like seeing him after surgery, even though you were told what to expect, actually seeing it was a completely different feeling. This was it, the pathway to healing was there, and I felt instantly eager for it to start.

The next three days consisted of healing, and showing Emmett how each new device worked. He was immediately protective of what was in his body, and didn't trust anyone to touch them. He wanted full control of whatever needed to happen. The nurses, the Saints they are, always found a way to do what they needed to do, while making Emmett feel like he was the decision maker.

I learned all things portacaths and g-tubes. I learned how to access him with a three quarter inch needle if I had to, and change out his g-tube in the off chance that it fell out. I was equipped with a full medical bag to travel with, with enough supplies to remedy any medical issue that could arise for Emmett. It turned out that I would need them for Brittany as well, but we'll get to that in the next chapter.

Jared left the next day to pick up our nephew Justin from the airport. He flew in from Alberta for three weeks to take care of the farm for us. After he left, my cousin Chad would come for two weeks, and our neighbors stepped in whenever we needed them to in between. Jared would fly back from Florida for days that we had no coverage. The logistics were complicated, but somehow we made it work.

On January 30th, I had my final meeting with the team. Dr. Erker reviewed every type of chemotherapy Emmett would receive, as well as the side affects to go with it - Vincristine and Carboplatin would be administered while we were in Jacksonville. Vincristine would likely give him sore legs, make him vomit, decrease appetite, make him sleepy and cause his white blood cells to drop. When we got back to Canada, Emmett would have a six week break, then the chemotherapy would start up again. Six cycles of Vincristine, Cisplatin and Cyclophosphamide. Cisplatin having the most vicious of side affects, such as permanent hearing loss, complete loss of appetite, severe nausea and vomiting... to name a few. Finally, Dr. Erker wrote a number down on a piece of paper and circled it. The number was 80%. That was Emmett's chance of a complete cure based on the makeup of his tumor mixed with the treatment regimen that he would be receiving. I sat at the table and cried, begging God to put him within that number. Begging him to make the upcoming pain and suffering worth it. I hugged everyone, and they wished us well on our journey and all gave me their phone numbers in case we needed them for anything while we were away.

I went back up to the room where Emmett was waiting for me. I got him dressed, we packed up the rest of our things, and made our way down to the lobby where my cousin Ryan picked us up to take us to the airport hotel. Jared was on his way to the hotel with my parents and the girls, and Brittany was on her way in her own car. We all met at the hotel, had supper, said "see you later" to Jared and settled in for the night before a long day of travel the next day.

I laid in bed thinking about how it all still seemed so surreal, yet here we were, so deep into it. I had no idea what we were walking into, no idea what to expect and no idea how Emmett would react to any of it. I had no idea how this experience would change my life, for good and for bad. How the relationships I was about to make would become some of the most important in my life. How watching my son persevere through something that no child should ever have to experience, would allow me to see a side of him that I never knew existed. My faith in humanity, as cliche as that is to say, was about to be restored in ways that to this day still leave me in awe to think about. I was about to be humbled in every way possible, through the most scary, yet fascinating journey my life would ever take me on.

Up Next - Chapter 7: Jacksonville