About a week later we took our first trip to Brigham and Woman’s hospital to have Danny fitted for a radiation mask. Before leaving the house I put numbing cream over the area of his chest where his port was placed. Upon arriving and signing into the radiation department in the basement of the hospital, we were lead to a small room, then accessed his port with what looked like a plastic butterfly with an inch long needle sticking out of the middle. Right into my 5 year old’s chest. We were both terrified. I held him on my lap as they did it. They wanted me to restrain his arms in case he tried to block them. Never in my life would i traumatize him by doing that. I told them i trusted him not to move. Instead he opted for holding my hand. It went right in and he just blinked at them. He was always so brave, and with the numbing cream there was no pain. I was so thankful that he didn’t feel anything.

Next, we went in to another room with a giant machine and what looked like a hospital gurney. They explained that the machine was the radiation machine and it was like a giant robot that moved around on its own. The anesthesiologist came in and hooked a tube up to Danny’s port and we got him settled in my lap. The doctor said he was going begin to administer the propofol and explained that it was a medicine used to help Danny fall asleep so they could fit him for his mask. The medicine looked like a tube of milk. I watched it make its way slowly through the tube and into his body. Suddenly he went completely limp in my arms and his head dropped onto my arm. It was terrifying. He was totally lifeless. They helped me lay him down on the table with his blanket so they could begin.

A little while later they wheeled him out on a bed and into the recovery room so that he could wake up. The doctor came and showed me a mask that looked like a white hard plastic screen that fit over his face. They would be using this mask for his 33 radiation treatments to keep his head perfectly still and explained how it clips on to a board behind his head as well. I felt numb. I didn’t want his perfect little head in this vice grip face contraption.

The next day we went back for his first radiation treatment. We went through the same procedure and accessed his port again. Then I walked with him into the back room to put him to sleep. Then I walked out and cried. There is nothing easy about holding your child as they go limp in your arms and then handing them over to doctors.

Everyday was the same. We got into a routine. They would wheel him to the recovery room and I would patiently sit by his side waiting for him to wake up. After about 30 minutes his nurse would begin taking the monitors off him and he would begin to wake up. Day after day he began to get angrier every time he woke up. He would hit me, and jump at me and yell. Propofol makes you instantly fall asleep, causing major confusion and anxiety when you wake up from it. He also said it made his mouth taste like metal and he hated it. We worked with the child life specialist and family counselor with different techniques we could use. We started with a reward sheet where he could earn stickers and work towards a prize. With his diagnosis, and not knowing how much time we actually had left, I had no intention of making him have to earn anything. So we began taking daily trips to Toys R Us on the way home after treatment. We also learned that when I told the nurse not to touch him until he started to wake up on his own (which took almost an hour) he was a very pleasant person when he would finally wake up. The family counselor also reinforced with the nurses not to bother him or touch him until he woke up on his own. Typically they like to keep things moving, but in his case we were going to do what was best for him, regardless of what anyone else said. I quickly became a “mamabear”. He was already going through enough on a daily basis, i wasn’t going to let anyone bother him.

About 2 weeks into radiation we began his chemotherapy infusions of avastin. I was nervous how his body would respond to it. I didn’t want poison being pumped into his little body. Luckily there were no side effects that we saw right away. He did great. We would go in for radiation and once a week we would go back to the Dana Farber building and he would get an hour long infusion. We would pull the video game cart into the room and he would play his games. I would sit next to him and make crafts to keep my mind busy, sometimes he would join in. After treatment we would usually get lunch. Finally we would finish for the day and he would skip down the hallway to the elevator. We would get into the car and he would beam the biggest smile at me because he knew we would be going directly to the toy store.

After carefully looking through the whole store and searching through the video game isle, as I followed patiently until he would find the perfect prize.

We usually ended the night playing one of his many Super Mario games. He was so good at playing it. He would allow me to play with him, but if I fell or didn’t play the way he wanted me to play, he would reach over and take the remote away and put it on the other side of him. That was his way of saying that I was done playing.

As we reached his 20th radiation treatment he began to lose the hair on the back of his head where the machine focused the treatments. Soon the whole back of his head was bald. I didn’t tell him. Soon after I remember seeing him touching his head and then he slid hand down the back and looked at me. He told me there was no hair and that it was soft. It was heart breaking to see him like that. But then his resilience came through again and he shrugged it off and went back to playing. It was mid December so we began wearing hats a lot more. I took him everywhere that he wanted to go. I couldn’t stand when I would catch someone looking at his head, I immediately filled with rage and pure heart ache. Luckily he never noticed them looking at him, he was always too busy to care anyways.

As we neared the end of radiation, it became time for Christmas. It was extremely bittersweet because we didn’t know if he would live to see another one. He was doing so well but we knew that could change in the blink of an eye.

We finally finished radiation the day after Christmas. We celebrated by going to Disney on Ice with Danny’s cousins.

He finally woke up after about an hour of sleeping. He was so confused from the medication they used to sedate him. We gave him a snack, and then i put my baby into a wheelchair so that we could bring him up to the “patient comfort suite”. One of a few rooms they offer to families or patients for privacy. It had a bed and a tv like a normal room, but it was a bit bigger. In the mean time my dad and aunt showed up to the hospital. Looking back i imagine they drove about 200 miles per hour to get there so fast.

We got Danny comfortable in the bed and situated with a video game while we waited to hear from the doctors again. Finally the nurse came and led us to a meeting room with a long table and a bunch of chairs. There we sat across from a team of 3 doctors and listened to the top brain tumor oncology doctor explain to us exactly what kind of tumor he had, and the way it grows and then explained what they do to treat it. I asked him many questions. But sat and reserved the questions that i knew i didn’t want the answers to. (how long do we have? is this terminal) The questions kept screaming in my head. But i didn’t want the answer. Eventually in his long speech he told us that a “good case” is 9 months. Mentally i counted in my head 9 months ahead, and landed exactly a day before his 6th birthday. I was terrified. But really that was the least of my issues at the moment. I needed to know what i had to do next. I needed to know when i needed to do it and how and where. I felt like i was running as fast as I could down a never ending hallway. I literally felt my existence leave my body and begin walking in front of me.

The doctor told me that Danny would soon receive 33 radiation treatments. And during those treatments he would also begin chemotherapy. He told me that he had a new clinical trial running and that Danny qualified to join the trial. (I had no idea that kids actually had to qualify for life saving treatments) There is no known cure yet for his type of tumor, so there were a few trials running in different places around the world by doctors taking handfuls of chemotherapy medications and administering them to children in hopes of finding a combination that lengthens their lives.

We left the room floating in total shock. I remember seeing everyone’s faces. We just kept staring at each other and then at Danny, reminding ourselves that he was still the same boy that he was earlier that morning. I stared at his face because I needed to see that he was the same, and completely unchanged. I sat on the bed and picked up the video game remote and began playing with him. I wanted to remain as normal as possible for him.

Soon we were finally able to go home, it was dark outside, and I had no idea how to navigate around traffic to get home. We finally arrived home and was met by the majority of the rest of our family. Everyone was talking, Danny joined his cousins and was running around laughing. Everyone was talking in the kitchen. Like robots moving and interacting with each other.

I walked upstairs to my room (the room that i shared with Danny) and I finally allowed myself to breakdown and cry. I was absolutely sobbing for what seemed like an hour but was probably 10 minutes. My body was on overdrive. I knew I needed to do whatever was possible to give him the best treatments to make him better and i needed to do it right away. I had no patience and i just wanted to keep moving forward.

A few days later, on the morning of October 31 (yes, halloween) we were in children’s hospital to get Danny’s port placed in his chest. It was a surgical procedure that took a few hours. The port (as they explained to me because I had no idea what it was) is used to administer medication to his body through a small accessible device they place under his skin near his shoulder.

When he came out, because he was such a skinny little guy, the port could be seen protruding out of his chest like a button.

We were able to go back home a little while later. And we spent halloween snuggled up on the couch watching movies. We had a few visitors. Later on I asked Danny if it would be ok if I took Matthew out for a small walk. He said it was ok. So I took Matthew to a few houses on the street with another friend of ours. We collected candy for Danny as well.

When we had the first meeting with the doctor he told us that they have a new way of studying the tumor, they were now able to do a “core sample biopsy” of the tumor by putting Danny to sleep and entering the back of his head and taking a tiny piece of the tumor. So we went in to have that done a few days after halloween. While we were waiting in the waiting room the radiation doctor came and met with us and explained how radiation would work. Then Danny came out and was kept in the ICU overnight. I remember the nurse coming to get us from the waiting room and told us he was already in his room ad he was still asleep. I remember turning the corner and i was terrified. It was the first time i had to see him covered in wires, a bandage wrapped around his head, his skin looked grey, his lips were bright red. He looked so different. Within a few hours he woke up and returned to looking more normal. We talked to him a lot because he again woke up very confused. After my parents and my sister left the hospital for the night, I finally climbed into the bed with him. I snuggled into him. I was exhausted. All night long the nurses came and went, checking his vitals and checking his brain functions to make sure there was no damage done by the biopsy.

I got to finally take my baby home the next day. He returned to normal. But we made sure we all moved a little slower so that he didn’t over due himself. A week later we got to remove the bandage to see that the “small incision” was actually 8 stitches long.

I wanted to create a blog because i wanted a place that other people can come, sit quietly and read. I also independently run the “Danny’s Warriors” page on facebook, but i needed somewhere else away from facebook, away from all the noise. I have had a million different feelings since beginning this journey, and if even just one person reads this and finds a connection or feels that they can relate, then i feel like i have accomplished the task im reaching for.

To start out, i want to take you to the beginning. The first handful of posts are going to be extremely difficult for me to get through. I apologize now if they seem scattered. I have to dig deep down into a place that i buried in my memories because it was a place in my memories that i never wanted to revisit again.

June 2013. I made a decision to leave my job and spend the summer with my boys. They were both in daycare while i worked 4 short days a week. This was the last summer we had before Danny was going to start kindergarten. I knew once “real school” started, there would be no more spontaneous outings during the week. Our lives would be changing. I would no longer be dropping both boys off to daycare. Now Matthew would be going to daycare and Danny would be going off to school. I wanted to make the summer special and spend as much time as i could with them.

Danny started kindergarten that September, and he loved it. He had many new friends, great teachers, he loved the bus, and he loved recess time. He would come home after school and fall asleep on the couch for about an hour. He was so wiped out from his busy days.

October 19th 2013. We were at the park, one of the many parks that we frequently visited. Soaking in one of the last few warm days of the year. The boys were running around playing. Climbing, jumping, and yelling as always. Danny came down the slide, ran by me and around to the latter to climb back up so he could slide down again. His foot slipped and he bumped his head on the ladder. Immediately he cried, and as usual he was too busy to let me fully asses him before he ran off again. There was a tiny bump right above his eye. And he was back to playing with all the kids. Even when the boys were little, they never let anything bother them, they were always too busy to care.

October 20 2013. Danny began tilting his head to the right when he was looking at something. The closer he got, the more he turned it.

October 21 2013. We took him  to the hospital after he complained of a headache when he woke up. He was still tilting his head. After spending the day at the hospital they told us he was fine and to follow up with an eye doctor for vision issues.

October 22 2013. Eye doctor appointment early in the morning. No complaints of a head ache. The doctor said he had perfect vision and thought that he developed a habit and told us to help him correct it by reminding him to turn his head back straight. It just didnt seem right to us. But we had nothing to worry about so we trusted him.

October 23 2013. Danny woke up and told Dan(his dad) and his nana (my mom) that he was seeing 2 of everything that he looked at and that he had a really bad headache. We decided to make the hike into Boston and go to the childrens hospital. We spent the day in the emergency room with many doctors coming in and out looking at him. They send us up to see an eye doctor. Finally they said they wanted to give him an MRI to look inside but they couldnt that day sso they wanted us to stay over night and do an MRI first thing in the morning.

October 24 2013. My mom and sister met us at the hospital. We waited in the waiting room of the MRI office. It was finally his turn. He was then sedated so he would be perfectly still so they could get perfect images. Having his sedated was terrifying but i knew it was best for the images and for him. We took a walk and got food. We had an hour and 30 minutes to wait till he was done. We went back and sat in the waiting room and we were finally called into this little tiny room in a back hallway. There sat a team of 5 people, a doctor, a psychologist, a fellow doctor, a neurologist and another fellow. Before the door could close the little man sitting in the front said “he has a brain tumor”. My body went numb. I never in my life expected to hear those words. All i could ever imagine was that he had a concussion from bumping his head but i kept telling myself he only bumped it lightly. I never imagined there was a tumor growing inside his head. I was completely shocked. I remember my legs shaking. I started running. No physically, but mentally. I began asking a million questions. Anything that i could think of. How? Why? When? Why? why? why? They told me i would soon have a meeting with another team, but first they wanted to move us to a room upstairs. I just wanted to see my baby. I needed to touch him.

They brought me to the recover room where he was still asleep on a bed behind a curtain in a room with many other children and nurses bustling around. I stared at him trying to figure out how this monster was inside of him. I touched him. I kissed his face. I didnt want to wake him up or bother him. Suddenly nausea kicked him. I wanted to throw up everything that i had ever eaten in my life. I was so shocked and confused. My fingers tingled. I alternated between sitting and staring at him, to standing over him. I had to continuously repeat to myself, hes right here, hes alive, hes mine, hes coming home with me, hes right here, hes beautiful, hes ok, hes going to be ok, hes right here in front of me.

I decided that very second and told everyone around me, we are not going to let him see us crying or scared. When he opens his eyes we will smile at him. We will reassure him that everything is ok. We will never let him see the amount of fear that we all have right now. I dried my eyes, and i waited patiently for him to wake up. So i could finally squeeze him and kiss his cheeks as hard as i needed to, instead of the feather light kisses i left all over his face and hands.