We get to go home!

Happy boy!

We awoke bright and early on Wednesday, April 17, 2013 ready to go home. The surgery was a success and Nate seemed to be doing well. We were initially told that he would be able to go home soon after surgery and that's exactly what we were hoping for! Stephen and I slept in Nate's room; I in the "crib" and Stephen on the very uncomfortable chair. My Mom, who spent the night at the convent with Mother Olga (this woman supported us beyond belief!), came back to the hospital to hopefully see us go home. Now, to just wait for the doctor's approval.

Just hanging out waiting for the doctor's approval

All of the nurses that stopped by seemed to think he was doing great and that we'd get the okay to leave. Dr. Kieran, his neuro-oncologist (What is it?) stopped by to talk about what the future would look like. For the first year, Nate would have an MRI (What is it?) every 3 months to check for any growth of the tumor, check the size of his ventricles, and to make sure the ETV (What is it?)  was working. These MRI's would be done at Boston Children's hospital with a follow-up clinic at Dana-Farber's pediatric brain tumor clinic. As long as there was no growth and everything else looked good, once the first year was complete, we would move to MRI's every 6 months. We didn't want to look too far ahead. We were just concerned with trying to make it to the first follow-up appointment. You never really realize how much your life is turned upside when a brain tumor diagnosis is given. When we heard the benign (What does it mean?), we ignorantly thought, "Great, we have nothing to worry about." Man, how uninformed we were. (We'll have more on that later.)

Dr. Goumnerova, his neurosurgeon, came soon after Dr. Kieran. She was the one that had to sign off on his discharge since she was the one who did the surgery. She thought he looked wonderful. She was confident that things would be fine and we wouldn't have any issues leaving. She even said he could go back to gym class the following week! What?? The kid just had 2 brain surgeries in less than a week. Crazy! She did order a follow-up MRI to be done in 6 weeks to ensure the ventricles had proper flow and that fluid wasn't building up again in his brain.

So...it looked like we were able to go home. Shoot...where were Nate's clothes? Oops, Stephen brought Nate's clothes from the initial Friday appointment home and he never brought clothes back to the hospital! The nurses were nice enough to let us leave in his hospital gown and pants. She probably just felt bad for us!

I'm guessing he's not too happy about his outfit!

Until next time, Boston...

Someone was happy to be out, but too tired to enjoy it!

 

 

April 16, 2013....SURGERY DAY!

If you're just joining us on our journey and this is the first post you're reading, please try to go into the archives and start from the beginning so you may understand our story better. It's now October 2014, but our story continues from Tuesday, April 16, 2013. Thank you for taking the time to join us on what has been a busy 3 years! Please subscribe to the blog with your email or choose to follow so that you may stay updated with every post.

This is how I slept from Saturday until Tuesday

I didn't get that much sleep prior to the morning of Nate's surgery. With the aftermath of the Boston Marathon bombing and street closures, I thought I was going to have to face this alone. But, low and behold, Stephen walked into our room right before 6:00 a.m. Thank God! I don't think I was ever so happy to see him! Nathan was also very excited to see him too!

My Mom arrived soon after. I knew it would take a lot to keep her from the hospital. It was a bit scary for her walking past all of the armed guards (for security after the bombing), but she didn't care; as long as she got there.  We were told that Nate would be taken down right before 10 a.m. The team from Dana Farber Cancer Institute (DFCI) came in to tell us that they can't confirm their original news until the pathology comes back, which usually takes about a week. Wow...what a roller coaster. On Saturday, we were told the tumor was benign and wouldn't require treatment. On Monday, we were told that after the surgery, he would begin treatment. Now, they were telling us that they really didn't know what to expect. I wouldn't wish this on anyone. The uncertainty of it all was just beyond overwhelming.

We were quickly becoming impatient; it was already after 10, and we just wanted this done and over with already. The nurses finally came to get us and we started to walk down to the elevator. You think you're strong and then it becomes reality that you're walking your baby into brain surgery. It was such a surreal feeling. We all get into the elevator and the nurse gets a call that the operating room is now unavailable. Are you serious?? Nate's surgery required the surgical suite with the inter-operative MRI (What is it?) and it was being used. Later on, we would find out that a child that was injured in the bombing was having emergency surgery. And just like that, we were slapped back into reality that things could be worse. So, we headed back upstairs to wait some more. Thankfully, it wasn't that much longer. Nate was finally taken back right before noon. They were nice enough to let all of us go back to pre-op with him. It was really helpful to have my Mom there with us. The anesthesiologist was incredible and the nursing staff was awesome. I will never, ever forget that the nurse that took him back took my hand and asked me what Nate's favorite song was. I told her he liked, "Twinkle Twinkle Little Star." She told me that everything was going to be okay and started to wheel him back, all while singing the song. She probably has no idea what impact that had on us.

We weren't exactly sure how long the surgery was going to be. We went into the waiting room and met up with Stephen's parents and one of his aunts. His cousin, Alaina, also stopped by to be with us. It was such a good feeling that we had so much support. People tend to forget that when something like this happens, it not only affects the immediate family, but also trickles down and affects everyone that loves and supports the family! We were thankful that Stephen's family organized a mass in honor of Nate the Sunday before the surgery. We had countless number of people praying for us. We knew it would get through surgery safely.

Nate was back in his room by 2:30 p.m. While he was in recovery, we met with his neurosurgeon, Dr. Goumnerova. She felt the surgery was successful, despite not being able to take a biopsy. The brain stem tissue had grown over the tumor so it was very dangerous to attempt a biopsy. She felt that it looked as though it was a low grade glioma (What is it?), consistent with what they originally thought. She felt that he wouldn't require any treatment, outside of MRI's every 3 months to be sure that the tumor wasn't growing aggressively. This made us extremely hopeful.

So happy to finally have milk after fasting for 12+ hours!

We spent the rest of the day relaxing and letting Nate rest. He responded quite well and was actually active throughout the day. He was definitely happy to not have a drain coming out of his head! He was excited to have visitors as well. We were able to spend time with my Mom, Stephen's parents & aunt, our friend Ashley, and the wonderful Mother Olga (Who is she?). She was such a special part of our time in Boston.

April 15...another day we'll never forget

Nathan woke up on Monday, April 15, 2013 at his normal 4:45 a.m. time. Funny how even with me sleeping right next to him in the hospital crib doesn't change his sleeping habits! We snuggled for a bit and watched Alvin & the Chipmunks together. After everyone left the previous night, including Stephen, we were able to get a little rest. He still hadn't eaten much of anything; a few crackers here and there, but that's about it. He was content with just drinking his milk. I wasn't about to force him to eat, that's for sure.

snuggling at 4:45

As the morning crept on and the rest of the hospital woke up, one of the neurosurgeons came in and asked if I wanted to review the MRI with him and we could talk more about the surgery. I had spoken to Dr. Goumnerova, Nathan's neurosurgeon, on Sunday, but hadn't seen the MRI yet. I was nervous to actually see it. There's something about knowing that your son has a tumor in his head and knowing it can't be removed, ever, and then it's something else having to actually see it for yourself. I wasn't prepared for what I saw.

Once a nurse could sit with Nate (at this point, he could not be left alone with the drain coming out of his head), I was able to sit down with the doctor. He pulled up the image and I felt sick to my stomach. The first set of images he showed me was the one that was first taken on April 12, 2013. If you've never seen images of a brain in person, I'll do my best to explain what I saw. His entire brain was filled with cerebral spinal fluid (CSF), to the point where it was almost pushing on his skull. It was heartbreaking to see and tears slowly ran down my face. Our bodies produce approximately one pint of CSF every day, continuously replacing it as it’s absorbed. In Nate's case, it wasn't getting absorbed because it had nowhere to go; the tumor was blocking its path. Hydrocephalus is a life-threatening condition, almost as much as a brain tumor. This could have caused major damage to him and would've potentially killed him if the initial MRI appointment had been any later. Because I had never seen a brain MRI firsthand, I asked him to draw me what a "normal" ventricle is supposed to look like. The difference was staggering. I could not imagine the extent of the headache that our little boy must have had for who knows how long. Our poor baby. (we still have yet to look at that MRI again)

The surgeon continued to explain that they would drill a hole through his third ventricle which would allow for the CSF to travel out of the brain and be absorbed by the body. Because his tumor would always be there to block it, the CSF needed a new path out. He also told me that they would attempt a biopsy if possible. If it was too dangerous because of the tumor's location, they wouldn't go near it. Then, what he said next made me lose it. I had been pretty strong up until that point. I was in "Mama Bear" mode, doing whatever I needed to do to keep Nate calm and happy; I hadn't cried much and was still basically in shock. He told me that once the surgery was done, Nate would start chemotherapy, possibly radiation. WHAT??? We were told on Saturday afternoon that he wouldn't need treatment right away, if even ever! That this surgery was supposedly the "cure" for this type of tumor. I LOST IT. The doctor was a little surprised at my reaction and wasn't sure what to do next. He put his hand on my shoulder and told me it was going to be okay. That was nice of him, but seriously?? We were told one thing on Saturday and now, it felt like we were being told the exact opposite. I didn't even know what to feel. I explained to him what we were told on Saturday and he attempted to backtrack, but it didn't work. It was too late and I was already beyond upset.

Once back in the room, I snuggled up to Nate for a little bit and just cried as quietly as I could. How could our lives change so quickly in a matter of days? How did we get here? Once I was able to compose myself, I called Stephen. Through sobs, I told him what the doctor told me. He was beside himself. It was so hard for us to be apart; I know he felt bad for not being there and I felt bad to having to tell him this news over the phone.

A little while later, a nurse came in and told me that I could take Nate out of bed, if I wanted to. Really? She didn't have to ask me twice!! She helped me take him out of the bed and I was able to sit with him on a chair. It was so nice to have him out of the bed and hug him. I quickly Face-timed Stephen to show him. The both of us cried together on the phone. Nate had no idea what was going on; he was probably thinking, "What the heck is going on with these 2?" All he knew is that he didn't have a headache anymore. The drain was doing it's job by taking all the fluid out. Watching that bag fill up with fluid was more than enough to make anyone sick. And knowing that simply making Nate upset creates an increased flow of CSF out of that drain is enough to make any mother bow down to their child just so they don't get upset. Oh, the things you learn.

Out of bed!!

We had a surprise visitor come in: Mother Olga. This woman was just amazing. She brought this calmness with her that would make even the non-believers out there feel good. She saw that I was upset and just hugged me. She gave the best hugs. I put Nate back in bed and we just talked for a few minutes. She only stayed for a short time so we could get some rest. Once Nate fell asleep, I left quietly so I could get a snack and something to drink. As I walked down the hallway, it was eerily quiet. All of the nurses were huddled around a television. 

I wondered what was going on, but continued on my way to get something to eat. When I returned to my room, I had missed several text messages and a phone call. I started to look through them and they all were just asking if we were okay. I didn't think much about it because of our current situation. I switched off Alvin & the Chipmunks and couldn't believe what I saw. No wonder why everyone had been texting and calling. There was a bombing at the finish line of the Boston Marathon! Oh my! No wonder why all of the nurses were huddled around the television. But, I give credit to the entire staff there. They didn't miss a beat and were attentive as usual. We had no idea what was going on less than a mile down the road. 

I finally got a chance to talk to Stephen on the phone and we were both thinking that he wasn't going to be able to get back into Boston in time for the surgery. All roads into the city were temporarily closed and it looked as though Nate and I were going to be in this alone. My phone was lighting up every few minutes and Facebook messages continued to pour in. It was incredible that so many people were checking in on us. What a way to make a person feel loved. We needed that.

After several conversations with the nurses (we were told that only emergency hospital staff were being let in the hospital due to the severity of all of the injuries) and Stephen's phone call to the Brookline police, it looked as though he was going to have to wait until the morning to try to get back into Boston. Nathan's surgery was scheduled for first thing in the morning. Ahh...another sleepless night.

Team Nate the Great...Help us help others!

We are often asked how people can help. We began a fundraising page for Nate through A Kid's Brain Tumor Cure (aka PLGA Foundation). Please consider donating what you can as this will not only help Nate in the future, but so many other children. Check out our "Help Us Help Others" page directly on the blog or can go directly to the Team Nate the Great page. Thank you for taking the time to read our blog and choosing to help.

An uneventful overnight to a busy day!

If you're just joining us on our journey and this is the first post you're reading, please try to go into the archives and start from the beginning. It will surely make a lot more sense that way! It's now October 2014, but our story continues from April 14, 2013.

Nathan's overnight was uneventful. He and I shared a lovely crib (that he hasn't left since we arrived) and got a great night's rest. Just kidding....about the great sleep! We did share the crib though. I knew my short stature would come in handy someday! :)  

drinking some milk at 4:45 a.m.

In this world of technology and social media, Facebook really came in handy during the lonely moments in the hospital. Messages and posts were coming in from all over: high school friends, college friends and teammates, bowlers, family members, former co-workers, former teachers, former teammates, and neighbors. It was incredibly helpful to read all of the kind comments and prayers. Sometimes people forget it's the little things that get you through something like this. These are things we will never, ever forget. 

Stephen was back at home making sure Benjamin's life was disrupted as little as possible while Nate and I handled hospital duties! We played with as many toys as we could and watched The Lion King and Alvin & the Chipmunks several times over. We were hoping to get some visitors that day, and boy, did we! Stephen's cousin, Mona, and her boyfriend were the first to arrive. I'm sure I looked like hell, but I'm guessing they didn't mind. It was a nice break to see people that knew us (the nurses were wonderful, but I'm sure you can understand what I mean) and wanted to be there for us. When something like this happens, it doesn't affect just the 4 of us, it affected everyone who loves and supports us. We understood that very quickly with all the love and support we received.

Stephen arrived shortly after they left; it was so nice to have him back with us, despite knowing that Benjamin was still home with Stephen's parents. I missed him terribly and was looking forward to seeing him later that day. We were able to meet with the neurosurgeon who described what the surgery would entail. She was going to do a procedure called an Endoscopic Third Ventriculostomy (ETV).(the actual definition!) She would drill a hole through his third ventricle. This would allow his cerebrospinal fluid (This link will give you a good definition of hydrocephalus and what CSF does for the body) to have somewhere to drain since the tumor was blocking its original path. This procedure that is the safer alternative to a shunt (What is it?). We have learned that we are incredibly lucky that he was a candidate for the ETV, as opposed to the shunt. While she was performing the surgery, she would also attempt to do a biopsy to confirm the original diagnosis, a tectal glioma. The surgery was planned for Tuesday morning, April 16, 2013.

Our next visitor that day was Ashley. She is a former volleyball player of Stephen's who lives in Boston. She and her mother are like family to us and she was kind enough to come to the hospital and spend the afternoon with Nate and I. She didn't have to spend as much time as she did and we are forever grateful. 

Stephen's cousin, Steve, stopped by to see us. He was with us when we first got the news about Nathan and was instrumental in helping us get to Boston. He was in the area and brought us a bunch of cheesecake from the Cheesecake Factory! What a lifesaver, in more ways than one! He also introduced us to Mother Olga (Who is Mother Olga?). This woman carries a light with her that is indescribable. She walked into the room and we just felt like, "This is going to be ok." She prayed over Nate and prayed with us. We were beyond blessed that she took the time to stay with us as much as she did.

Stephen's parents finally arrived with Benjamin. It was fantastic to see him and so hard not to cry in front of him. Good tears because I hadn't seen him since Friday morning and sad tears because he had no idea what was going on. Oh, to be so innocent. What a blessing! The boys were so happy to see each other. Benjamin wanted to hop right up on the bed! It was tough for him to understand that Nate couldn't move around a lot because of the drain.

Ben needed Mommy's hair too!

Nate was so happy to see Ben!

Someone missed his big brother!

Grandpa giving Nate some love!

What a day that was! Our room was full of visitors and full of love.

Hello Boston!

We wanted to take this opportunity to thank you for taking the time to read our blog. It is very important to us to share our story with hopes that it will help others; even if ends up helping just one family, that's good enough for us. If you are new to the blog, these first few weeks of blog posts took place between September 2011 and April 2013.

We were finally cleared to go and the ambulance from Boston arrived. The nurses came up with the stretcher and got Nate ready to go. Yet another thing we knew nothing about. Several of my family members have been transported on ambulances and obviously we've seen them, but we definitely weren't expecting this! Because he was transported directly from PICU and he had a drain coming from his head, they weren't using a regular ambulance. They were using the larger, box truck-type vehicle that resembled a PICU room in the back. It came complete a TV ready to play whatever Nate wanted. I was speechless. I traveled with Nate in the back while Stephen and my Mom followed in their respective cars. The 2 RN's that sat with us in the back were absolutely incredible. They were so supportive and caring. They answered every question I had (that they knew the answer to!) and were incredibly attentive to the both of us. Once Nate was comfortable on the stretcher and I was strapped in, I picked out The Lion King (his favorite at the time...thank God they had it!) for Nate to watch while we were on the road. Every so often, Nate got a little scared and needed my hair to soothe himself. They, too, were amazed at how quickly it worked for him and they thought it was hilarious that he put the ends in his ear, in his eye, and on his lips. Strange kid, I tell you!

Leaving the PICU, Nate was content with the iPhone

putting Mom's hair up his nose

watching The Lion King on the ambulance

trying to grab Mom's hair

The ride to the hospital was smooth and uneventful. We arrived in the basement and traveled up to 9 North, the neurosurgery floor. It was the first time I was ever at Boston Children's Hospital and I never thought I would arrive like this. After getting stuck in the tunnel, Stephen finally met us in our room after about an hour and the nurses started coming in and check his vitals, the IV, and the drain. I found it interesting how different the hospitals were; the nurses commented on how the IV was put in, how the drain looked, what bandages they used to keep everything in place. I'm not sure they were saying it was wrong, but they were definitely confident that their way was better. Just one of the many things that makes Boston Children's Hospital a good place to be.

We, unfortunately, had to share a room. Unfortunate for us, because in this situation, we had no idea what to expect, what news was coming, and if we needed space, we wanted it! I know, selfish, but at the time, we were in a position we never dreamed of being in. But, also unfortunate, because that meant that the entire floor was full. That alone can make anyone lose it. If you've never spent time in a children's hospital, do it. It will give your life a whole new perspective. Well, at least I hope it does.

We spent the next few hours just taking in our surroundings, as surreal as it was. We would look at each other in amazement, not even believing the situation in front of us. Nate was stuck in bed because no one was comfortable letting him out of bed due to the drain. That was incredibly frustrating. I was either forced to sit on a high chair so he could reach my hair or just simply lay in bed (actually it was a crib) right next to him. I was willing to do whatever made him feel the most comfortable. Meanwhile, every single person that walked in our room, doctor or not, got an earful from him. He was an anxious little boy beforehand, and now, he was simply a ball wound tight. He was scared beyond belief and it was heartbreaking to witness. While all of this was going on, we were missing our Benjamin terribly. This wasn't the way he was supposed to spend his first night ever away from home. Thank God for Stephen's family. His cousins quickly stepped in and kept him overnight and he had no clue what was going on. Good thing for innocence. We made him a quick video letting him know we missed him and sent it off to Auntie Nicole. Just one more thing to worry about.

Around 4 pm that afternoon, an oncology fellow stopped in and asked if we could go with her to discuss Nate's case. Our hearts dropped. It was hard not to get upset just hearing the word oncology. You think you know about something, but truly, you have no idea until you're in the middle of it. I've looked back at our journey so many times and thought to myself, "Damn, I can't believe I actually thought this or that."  Stephen and I walked down the hallway nervous beyond belief. After hearing bits and pieces of terminology from the doctors at Baystate: pineal region (What is it?), pons region (What is it?), brain stem (What is it?), and brain tumor, we had absolutely no idea what to expect. We sat down around a small, round table with a doctor we had never met and who had never met Nate. She opened up some paperwork and said, "Your son has a brain tumor on the roof of his brain stem called a tectal glioma (What is it?). And, based on what it looks like on the MRI, it is benign." She went on to say a million other things during that conversation, half of which we either didn't understand or we don't remember because it's all a blur. We attempted to take notes. We were stuck on benign. It was benign! At the time, before learning anything about brain tumors, we were ecstatic! This was the best news we heard in the last 24 hours.

She told us that we would meet with his neurosurgeon to discuss the upcoming surgery that he would need. But, because it was the weekend, and a holiday weekend at that, we wouldn't necessarily hear much until Monday or Tuesday. So, we were stuck just hanging out in the hospital for the next few days. We certainly didn't realize how eventful the next few days would be!

a boy and his milk

first time eating in 24+ hours!

The morning after...

Nathan seemed to bounce back quickly from the surgery. We obviously had zero experience in dealing with brain surgery and brain tumors, so we had no idea what to expect. One of my nephews has had several brain surgeries for hydrocephalus, but this was a completely different situation. Stephen and I didn't sleep at all that night. We attempted to share an uncomfortable couch, but we moved with every noise Nate made. It was a surreal feeling watching your 19 month lay there with tubing coming out of his head, slowly draining the fluid that was taking up most of his brain. This drain had to remain until the next step was taken because the tumor had gotten big enough to block where the cerebral spinal fluid was supposed to leave the brain. We both looked at each other several times throughout the night and commented at how calm Nate had become. This was the longest he remained still without crying in the 19 months he had been with us. It was hard to accept that he had been living with the worst headache imaginable for who knows how long. Knowing that he had been in an immeasurable amount of pain caused us much guilt. We should have known, but how?

Sleeping peacefully on April 13, 2013

 The staff in the PICU at Baystate was incredible. They continually asked if we needed anything and answered every question we had as honestly as they could. A Child Life specialist even stopped by late into the night bringing the exact same musical soother for the crib that we had at home. Sometimes, you just feel like you're in the right place. We knew we had that neurosurgeon to thank for saving Nathan's life that afternoon. If he didn't have the emergency surgery, who knows what would've happened. We don't even want to go there.

The morning arrived and we were anxious to find out the plan for the day. We were told overnight that we would head to Boston Children's Hospital, but we didn't know when. Doctors and nurses came in and out throughout the morning and we were told we had to wait for the ICU ambulance to arrive from Boston. Nathan and I would be transported from Springfield to Boston in that and Stephen and my Mom would follow in their own cars. My Mom ended up sleeping overnight in a home near Baystate and then came back over to our room in the morning.

Giggling with Grandma

In the meantime, our pediatrician called the hospital and I spoke with him for a short time. He was very concerned and supportive of all of us. Thank God for him and his nursing staff that also knew something just wasn't right. We have them to thank for saving Nathan's life too.

Around 11 am, we were told that the ambulance was on it's way and we were expected to leave Baystate around 1 pm. In the meantime, I decided to post something on Facebook. It's a tough spot to be in; I mean, you don't want people to worry, but you also want people who care to know what's going on. So, everyone that is in our immediate circle already knew so we decided to post something. The response was incredible and overwhelming. It was comforting to know that we weren't alone in this and that together, with everyone's love, support, and prayers, we were going to get through this: whatever it was.

April 12, 2013 continued....

It's amazing how things can feel like they're in slow motion and going by too quickly all at the same time. Within minutes, Stephen's brother and sister in law, Tom and Cortney arrived. We were still in the MRI area when they got there. What a sad moment in our lives; the four of us are supposed to be enjoying the time of our lives together and now we have to endure this together. Simply not supposed to happen. Cortney was almost 7 months pregnant with their first child at the time. Stephen and I actually looked at each other and said, "Maybe she shouldn't be here." We didn't want to add any extra stress to her and the baby. This was not anything a Mom needed to see while pregnant with her first child. But, she's a stubborn one and we appreciated her love and support of us and especially for Tom. He has a special connection with our boys and we knew how tough this was for him. Before walking up to the surgical waiting room, the four of us just stood there for a minute in disbelief. Was this really happening to us??

Stephen and I walked with Nate back into pre-op and sat with him until it was time. He was still a bit groggy from the MRI, but was continuing to play with my hair. My hair had become Nate's safety net, his "lovey" if you will. No blanket, no stuffed animal, just Mom's hair. Since the time that he was 3 months old, Nate played with my hair. It was his calming mechanism and at that point, it was ours too. After we saw Nate back to surgery, Stephen went to the waiting room and I stayed at the nurse's station to make the dreadful calls to my closest friends to tell them the news. How do you say it over the phone? I knew they were waiting for the call, but I also knew everyone was expecting good news, not this! It was a day, just as much for us as it was for them, that will be etched into their minds forever. Before his surgery was even over, Stephen's parents arrived, my Mom and niece arrived, and my best friend Brian came. Unfortunately, the waiting room was packed. All these families dealing with their own medical issues and we were dealing with a life and death situation. How do you do it? Tears, hugs, and more tears. We were all in this together. Stephen's cousin, Steve, had already been in the building visiting. Somehow, someone contacted him, and he walked in. He is in the medical field and is also a former priest who simply knows everyone who is anyone under the sun. He quickly started making phone calls to see where the best place was for Nate to be seen once this initial phase was over. We were so incredibly thankful for him.

The surgery was finally over and Stephen and I were allowed to go back to recovery. We heard Nate screaming as soon as we opened the door. Poor boy. We were told that parents aren't usually allowed back so soon, but he was inconsolable. I sat down next to him, close enough for him to grab my hair, and he calmed down. The nurses were amazed. They had never seen anything like it. This little boy just had brain surgery, was screaming bloody murder, and simply quieted down and stopped crying with the touch of my hair. They said I should bottle it. ;)

Our sweet boy playing with my hair

 The neurosurgeon came in and began explaining what he saw. Nathan's entire head was filled with fluid. Both of his ventricles were pushed to the max and who knows what would've happened if we waited any longer. We don't think about that. The surgeon was able to insert an external drain in his head to remove the fluid. This would stay in his head and continue to drain this excess fluid while the next steps were planned. He told us that he didn't go near the tumor because of its location. He wasn't exactly sure what it was and admitted he was not comfortable with diagnosing or treating him here. So, we talked about where we would want to go and it wasn't a question: Boston. He did, however, mention the words brain stem and pineal region. We knew this wasn't good. Nothing foreign in the brain should touch the brain stem or anything in there, for that matter!

We were able to update our family and then head upstairs to the PICU. Was this really happening?? We kept looking at each other in disbelief. When Nate was back in the room, he was the most calm he had been in almost 19 months. Despite just having brain surgery, he knew we were there and it was as if he looked up at us and said, "You figured it out. Thank you!" We remained in the PICU for the rest of the day and overnight. Stephen's parents stayed for as long as they could and said their goodbyes, as did Tom, Cortney, my Mom, and my niece. My friend Anthony also made the trip up from CT later in the day and he and Brian stayed until the last possible minute. Later that night, my brother-in-law Rich, also came up to visit. No one knew what to expect or what the future would hold for us.