November 2013 - January 2014

Nate & Ben playing with a new toy!

For those of you that are new to our blog, we are currently catching everyone up to speed and this post will get you to January of 2014. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

I will never forget the month of November! It started out with me leaving for a bowling tournament in Baltimore. I've left Stephen alone with the boys before, but Nate had a cold and I felt bad for leaving. Stephen assured me everything was going to be okay and I knew it was, but I still felt bad. I arrived in Baltimore and when I went to check in at home, Stephen told me that Nate's cold had gotten worse and he was having trouble breathing. Seriously?? We can't take much more. He called the doctor and a friend who had a son who previously had croup. She told Stephen to take him to the ER immediately. Talk about feeling helpless!! I'm in Baltimore for one of the few times I go and this happens.  They took him right back and gave him a breathing treatment and some oral steroids. He ended up staying there for several hours receiving two more breathing treatments before they felt comfortable letting him go home. He had croup and a double ear infection. Ugh.

It took over a week, but he was finally fever free and I brought him back to the doctor for a follow-up. Sinus infection. Again?? Round #2 of antibiotics were given. I'm just sad for this kid. As if he hasn't been through enough! I was a little nervous as we were getting ready to go back to Florida for vacation and I didn't want to bring him on a plane still being sick. The doctor assured me it was ok and away we went. While we were there, guess what happened? It develops this nasty rash because of the sun exposure while on antibiotics. Damn. He just can't catch a break.  He didn't seem bothered by it, but I called his pediatrician anyway. We were to stop the antibiotics and give him some Benadryl. Fun!

Nate's rash while we were in Florida

We were still able to enjoy ourselves in Florida and spent time with Stephen's brother, sister-in-law, and niece. We were looking forward to the holidays when we got home.

Nate in the water in Florida

Ben & Nate in Florida

We finished off the month of November with a scheduled appointment with the ophthalmologist for Nate. This appointment was NOT fun. He had an absolute meltdown and was inconsolable. I felt terrible for him, but at the same time, wanted to knock out some people that felt the need to stare and roll their eyes. Nothing like being supportive of a parent who's obviously struggling! I wanted to just run out of there, but we had to make sure there wasn't any damage to his optic nerve. Thankfully, we got good news and hightailed it out of there! 

December arrived and we continued to struggle with Nate's sleeping, or lack thereof. He was still waking up multiple times during the night and waking up early in the morning. It's like he's still in the newborn stage! We were averaging about a 4:15 wake up time. We felt like we've tried everything to create a solid "sleep environment" for him: room darkening shades, a sound machine, a night light, a humidifier, essential oils and diffuser. You name it, we've tried it. Ugh! I finally called a sleep consultant. We had the appointment over the phone. She gave us some things to try (tweaking the schedule a bit) and we were on our way. Or so we thought!

Nate & Ben on Christmas

The boys in the snow, Nate hates the cold!

We celebrated Benjamin's 4th birthday right before Christmas. He's a tough kid! It's not easy being the sibling of a brother who needs (and gets) a lot of attention. Ben is a soft-spoken little boy who is very understanding and tolerant of his brother's needs. It was nice to have an entire day all about Ben!

Ben was so excited about his Superman cake

Ben with his first bike!

The boys on Christmas morning

Thankful for hugs

2014 arrived and we celebrated all of our blessings, but quickly became anxious for Nate's next MRI looming on January 8th. Nate started out the year with yet another ear infection. He seems to get sick the week before every MRI. It's like clockwork! We arrived in Boston and got through the very stressful day. Those days are so long! We leave our house at 4:30 am to arrive in time for the 7:15 check-in. Nate isn't allowed to eat or drink as he is sedated for the 90 minute MRI. That is the tough part....trying to explain to a 2 1/2 year old that they can't have their morning milk. No fun!  We got the news we were looking for: Stable! We were also referred to the ENT to further look into his ear and sinus issues. That appointment came and we decided to have surgery to remove his adenoids and place tubes in his ears. We were really hoping that this would help not only with the infections, but also his sleep. Could this be the answer?? Unfortunately, we had to wait until March to find out.

waiting to be taken back for his MRI

Nate in recovery

The months in between scans seem to fly by! We kept busy with gym and music classes and school for Ben. Nate was doing well with daycare one morning a week and early intervention appointments. Ms. Laurie was a Godsend to our family. Nate loves her and looks forward to his playtime with her. She was constantly working with his anxiety and his vocabulary. She was always offering advice to me and even gave us some real medical equipment to use with Nate to help ease the anxiety that just hearing the word doctor gave him.

Nate & his stethoscope

Mommy & Ben breakfast date

It certainly takes a village to raise your children!

August-October 2013

Ben is the best big brother!

For those of you that are new to our blog, we are currently catching everyone up to speed and this post will get you to October of 2013. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

August threw us some curveballs, but we continued to navigate and push through. Early on in the month, Nate had to go to the doctor for an infected ingrown toenail. He is the kid that gets all the weird stuff! These random trips to the doctor, in between all the trips to Boston, really affected his separation anxiety and have pushed him into another level of overall anxiety around anything doctor-related. He starts screaming as soon as he sees the parking garage. It's just sad. There's no comforting him, no soothing him, no bringing him down a level. He screams from the moment we walk in the building until the moment we leave; even if we're just dropping off paperwork. Sometimes I think someone will call the police or DCF for fear I am kidnapping him. This poor kid! 

His sleep has not improved at all which in turn affects his entire day following the poor sleep. He reacts to every thing and everyone; not in a nice way either. We struggle to bring him in public, but continue to do so hoping the exposure will help and decrease the episodes of fear and screaming. Because of this daily struggle, we decide to have him evaluated by the Pediatric Development Center, our local birth-3 program. I tried to prepare them for what they may see, but when it comes to Nate, one can never be truly prepared. 

As I write this, I am looking back at the notes from the initial evaluation. It makes me sad to read, but so happy to see how far he's come! Here are some quotes from their clinical observation:

"When Nathan saw the three unfamiliar evaluators, he began to cry loudly..."
"It took some time to lure him over to engage...he would participate for short periods before running off and crying again..." "difficult to assess" 
"he began crying when his mother moved from the couch to the floor" 
"sight of small bag of stringing beads sent him running and screaming into the kitchen" "His reaction to strangers is intense and his difficulty in self regulating his emotions and behavior is concerning." "During the evaluation, Nathan did not attain any equilibrium until almost two hours had passed." "Given the medical trauma that Nathan has endured, his fearfulness around strangers is understandable. What is concerning is the intensity and duration of this behavior." 

He qualified for services, thankfully! We would begin one hour of play therapy once a week toward the end of September. And, it was suggested that we think about starting him in daycare one morning a week to help ease the separation anxiety. Thankfully, we were able to find a wonderful home daycare that was willing to start us only one morning.

September of 2013 started off with a bang! I was in Baltimore for a pro tour event in which I won my 16th star. For those of you that are unfamiliar with duckpin bowling, please check out www.wndatour.com! It was a very emotional win for me as it was the first one I won since my Dad passed away. 

Shortly after returning from Baltimore, we celebrated Nathan's 2nd birthday. What a milestone! It was so special to be able to celebrate with our family and friends, as it was his first birthday after his diagnosis. For those of you in the brain tumor world, I know you can relate!

Happy birthday cupcakes!

Ben helping open presents

It's not always pretty!

sweet hugs from the birthday boy!

Mom's hair is always a lifesaver

We continued through September, struggling with Nathan's continual screeching and lack of consistent sleep. There seemed to be no reason for the screeching; his vocabulary was still small and there was no other way for him to communicate other than to screech. This was something that we would be working on in therapy. The lack of sleep was a whole other story. His wake up times were anywhere from 1 am (no joke!) to 4:30ish. Sometimes he made it past 5 (and even past 6 on some mornings...I can count those on 2 hands, maybe even 1!). Despite some really tough days throughout the month, we were able to end it on a good note which was nice as we were looking at another follow-up in Boston.

Nate's next follow-up was early in October. His sedated MRI went well and we are so thankful that he does well with anesthesia. He always wakes up ready to go and ready to play. We were able to connect with 5 different doctors at this appointment and got some advice about his sleep issues. Our next set of appointments were set for January. Until then, we watch and live!

When we got home, we were ready to "reset" his sleep cycle. Sounds like fun, right? Ha ha!  He made some improvements early on, but it evened out and remained the same for about 2 weeks and then went backwards toward the end of the month. Ugh! He was continuing to wake up multiple times in the night and then getting up for the day before 5 (most days it was before 4). We also had his 2 year well check with his pediatrician which was absolute torture. 

We finished off the month doing all things fall related...playing in the leaves, apple and pumpkin picking, and decorating for Halloween. The boys were still hesitant about dressing up, but finally did. We did not go trick or treating though. Maybe next year!

can't get enough of each other

the possibilities are endless!

playing in the leaves

me and the boys

pumpkin time

best buddies

feeding the animals

smooches for big brother

Halloween! Nate was a doctor & Ben was a skeleton

July 2013

It's been pretty busy around here (in current time) so I apologize for only posting once a week. My goal is to get up to current time by the end of 2014! :)

We've reached July 2013, what a busy, busy month! We began by heading to Boston for Nate's first official follow-up MRI with visits with his team at Dana-Farber. To say we were incredibly anxious would be an understatement. We decided to stay overnight because we had the first appointment of the day. It's so much easier for an almost 2 year old because he wasn't allowed to eat or drink anything due to being sedated for the MRI. We arrived early to fill out paperwork. Once that was completed, we were brought back to the exam room. I ended up having to explain myself three times as to why I wanted him to be sedated for the MRI. Seriously?? He's not even 2 and they expect him to lay there for at least 90 minutes completely still so the images of his brain don't come out blurry? Once the sedation was settled, then I had to explain why he needed gas instead of the IV. The nurse insisted that they "know what they're doing" and he would be fine. We went back and forth a few times and through the tears, I begged to just give him the gas mask. The anesthesiologist agreed to it, finally. We were not going to have a re-occurrence of what happened at his 6 week follow-up at another hospital (check out May 2013). When Nate and I were called back to the MRI room, I had no idea what to expect. Well, I know now it is something I will never get used to, but I know I'll have to do it for a while. I sit on the gurney while Nate sits on my lap facing the doctors. They hold a mask up to his face for about a minute. He fights it and cries. But, he is able to breathe in the gas, and falls asleep quickly. I lay him on the gurney, give him a quick kiss, and walk out crying softly to myself. I walk back into the exam room and lose it. How the hell did we get here? And we're supposed to do this every 3 months. God help us.

Since we have a little time and they have our cell numbers, we decide to walk upstairs to get something eat. We sit across from each other, wanting to speak, but not knowing what to say. We each are thinking the same thing: begging the tumor to stay stable. Please let it be stable.

We walk back downstairs and are called back into recovery in a short time. He's still sleeping, which is normal. We sit down next to him and wait for him to wake up. Thankfully, he takes anesthesia well and wakes up ready to eat and drink. We are out of recovery in less than 30 minutes. What a trooper Nate is! We have to come back the next day for results, which is horrible for us. The waiting sucks! For the future, we will learn to make all of his appointments on the same day! We have a nice lunch with one of Stephen's former volleyball players and then head home.

No pictures!!!

The next day, we head back up to Boston to get the results. This was our first time at the Jimmy Fund Brain Tumor Clinic and the level of anxiety was rising. We will never get used to this.  We meet with several doctors over the course of several hours; all of whom are wonderful and supportive. We hear the words stable tumor. That's all we needed to hear. The size of his ventricles are also slightly smaller and may never be of a "normal" size. This is due to the amount of fluid that was built up in his brain. It was a long afternoon, and we were ready to pass along our good news and head home. 

The rest of July was full of celebrations, fun with family and friends, and lucky events! The first was our annual 4th of July picnic. We look forward to this day every year and we were hoping that it would still be festive with the pending news of Nate's scans. With the good news, we were all ready to celebrate! What a great day finished with the birth of our niece, Samantha! Such exciting things happening all at once!

watching the 4th of July parade

the boys hanging out

We were able to spend time at Seranak and Tanglewood throughout the month. If you've never been and are ever in our area, please check them out! We are so lucky to be surrounded with such beautiful scenery! I was even able to get away twice: once to Baltimore for a pro tour event. I love going to Baltimore; it's my home away from home and some of my best friends live there. I was also able to bowl in an Alumni event in Connecticut. This was another very special time as I was able to be surprised by one of my best friends (I cried like a baby!) and hang with all those who love me all weekend. What a special time. On the Sunday of this special 2nd weekend, Stephen got his first hole-in-one! I was so very proud of him! He is such a tremendous golfer. He needed this. He deserved this.

the boys playing at Tanglewood

the shirts we wore in honor of my Dad

Stephen's hole-in-one treat!

I was dreading the 25th. It was the anniversary of my Dad's sudden passing. I spent the day thinking of him and thanking him for watching over us as we navigate this new world of brain tumors. I always think of how sad he would've been to know that Nathan has a brain tumor. He was always worried about him because he cried so much as a baby and he just always seemed uncomfortable. He would've been devastated to know what we all know now. I know he's with me.

Surprise!

We finished off the month on vacation in Old Orchard. This wasn't any typical trip though. We were able to surprise my Mom not once, but twice. It was something I will never forget and will cherish always. She thought she was only going on vacation with my oldest sister's family, but we were able to surprise her by making the trip up as well as my other sister's family. But the big surprise was the my brother's family (from Louisiana) arrived to. It was such a special trip with so many great memories.

Surprise!

the 4 of us!

We're not watching and waiting; we're watching and living.

June 2013

For those of you that are new to our blog, we are currently catching everyone up to speed and are now "up to" June of 2013. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

We were slowly getting our normalcy of life back. Before Nate's diagnosis, we really thought we were living life to the fullest, but when something like this happens, it's like a slap in the face. And some days, there are more reminders than others. Any other parent of a typical 21 month old wouldn't necessarily worry about their child falling and possibly hitting their head, however slightly. But, for whatever reason, Nate just likes to hit his head; a lot. It gets so frustrating. Are we worrying too much? Are we not being careful? Is there more that we can do? How hard is too hard when hitting his head? These are all questions that pop up every time he falls; questions that we would learn to process each time he bumped his head on something. 

We went through June of 2013, enjoying the sun and our pool as much as the weather would allow us. Ben was starting to enjoy playing sports on the XBox Kinect so it was definitely something fun to do when it rained or at night. We were also working on Nate's appetite. It was so very hard to watch him eat so little when before surgery, he ate EVERYTHING. By the middle of the month, he was finally eating full meals and even tried chicken again. Like I said, day to day. His sleep was creeping later into the morning. When I say later, I mean 5, maybe 5:30. It was definitely better than 4! He still wasn't sleeping through the night, but getting up for the day at 5:30 is glorious when you're used to 4!

Father's Day arrived. It was a day I was dreading. It was my first Father's Day without my Dad, who passed away suddenly in July 2012. I bowled in pro tour stop in Connecticut and then came back home. It's just simply a tough day. We were approaching the anniversary of his death and I would be done with the first year of all the "firsts" without him. Those of you that have lost parents (or any loved one for that matter) can relate. 

We were also coming up on Nathan's first official follow-up MRI to check for growth of the tumor. I thought I was anxious on the days leading up to his MRI to check the size of the ventricles, but I was quickly learning all about scanxiety and how it truly affects your life.

swimming fun!

Nate keeping the hat on for 5 seconds!

Everyone needs to hold their toes while they eat!

He can golf too!

Ben just stopping to smell the "roses"

Someone got into the fridge!

Surprise gifts are the best!

Ta da!

May 2013

For those of you that are new to our blog, we are currently catching everyone up to speed and are now "up to" May of 2013. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost.

I apologize for the delay in posts as we are currently on vacation, enjoying the sun! But, we were able to share our story in person today so I wanted to be able to write about the month after Nate's diagnosis. It was a busy month, as most of them are, but we were adjusting to our new normal and regaining our footing.

It was our first Brain Tumor Awareness month, one that we would've never imagined being a part of. It was important for us to spread awareness, but being so new to the diagnosis, we weren't sure where to even begin. We've come a long way since then.

We started out the month with some small illnesses: Ben had a sinus and ear infection, Nate had a double ear infection, and I(Amy) had a sinus infection. Not a way to start the month off! But, we got through it. We were hoping that May would bring us some clarity to Nate's sleep issues. He was able to make it almost to 6:00 some mornings, and even close to 7 on one day. But, the consistency was missing; a part of us really hoped that the hydrocephalus was going to be the culprit, but we were starting to believe that this wasn't going to be the case. :(

In the middle of the month is when things started to get interesting. Ben stuck a raisin up his nose; thankfully, I was able to get it out, but not until the next morning as he waited a day to tell me that he even did it. Have to love 3 year olds! The next day, I was watching Nate play the iPad and noticed he started to lean his head to the right and get really close to the screen. Oh no! I started to freak out and my first thought went to the tumor. I called the pediatrician and they were so caring and compassionate. They talked me down from the ledge. I decided to email Nate's neurosurgeon and incredibly, she responded within ten minutes. She, too, talked me down from that same ledge. It was nice to feel heard, but supported at the same time by such incredible physicians. She didn't feel like it was an emergency, based on my description of what he was doing. But, we decided to make an appointment with a pediatric opthamologist anyway. We were able to make an appointment with one in Springfield for the end of May.

Before that appointment, I had a bowling tournament in Maryland. I decided to bring Nate with me so we could thank everyone in person for all the love and support we received from our bowling community as well as some of my closest friends. My Mom was nice enough to join me on the trip to help with Nate while I bowled. It felt great to have everyone see him doing so well. Their support had gotten me through that last month and it was nice to be able to share him in person.

Once I got back from our trip, Nate had 2 appointments on May 29. I was dreading the first appointment: a follow-up MRI to make sure the ETV was doing its job to control the flow of cerebral spinal fluid. I could not have ever imagined the anxiety that would lead up to that appointment! I knew that we would both be nervous, but simply getting off the exit and walking into the building made us both want to throw up. Knowing that Nate has anxiety around doctors didn't help the situation either. We checked in and were brought into, unfortunately, the same waiting room where 6 weeks prior, we were told he had a brain tumor. They refused to give him gas to help in the sedation to complete the MRI so we were back to attempting to put in an IV in a 20 month old. Sounds fun, right? Not even close. It took 3 attempts and several different technicians to get the IV in properly. This after Nate ripping one out. A test that should've taken about an hour took almost four. This was not the way we wanted our first follow-up to go.

The difficulty with the IV was worth it in the end. The ETV was working and now we had to wait until July for our first follow-up in Boston to see if the tumor was growing. This would prove the most difficult time in our journey. The "waiting." After leaving the hospital, we still had Nate's eye appointment to go to. We had no idea what to expect; which is nervewracking, especially when you have a kid that has such a strong dislike to all things doctor.

The appointment went as well as expected. Nate screamed the entire time and the doctor did his absolute best to get a good look at his optic nerve. With me holding him down, he was able to tell that there wasn't any damage to the nerve from the hydrocephalus. After Nate's initial diagnosis in April, we were told that there was no way to tell how much damage, if any, that the hydrocephalus caused. This is why his follow-ups would be so very important.

The rest of April 2013

Back in April of 2013, it was a very surreal experience coming home from the hospital. The previous 6 days were a blur. A brain surgery on the 12th, the Boston Marathon on the 15th, the 2nd brain surgery on the 16th, and home on the 17th. Our baby had 2 brain surgeries in 5 days! We were given the go ahead to resume our life. Whatever that was. We had to go home and find our new normal. This would prove to much more difficult than we could have ever imagined. Our life would never be the same. We would forget what it was like to have 2 happy and healthy children. Our sleepless nights would continue, but for many more reasons than we could count. 

Emotionally, I was still trying to find my new normal after the unexpected passing of my Dad. It had almost been 9 months since he died and here I was having to process the fact that my youngest son was just diagnosed with an inoperable brain tumor that he would essentially live the rest of his life with. In the following days and months, I would pull my strength from my closest family members: my Mom and my siblings. We each, in our own special way, have conquered some of the most difficult things life can throw at you. My Mom is the definition of strength when it comes to being a parent and she is where I draw my strength from. She has dealt with 2 life threatening situations of 2 of my siblings: my sister has Long QT Syndrome (she had a cardiac arrest at the age of 18 and survived) and my brother survived a traumatic brain injury playing indoor soccer just a short time after my sister was diagnosed. All of these things happened just a few short years after she lost her own parents, my grandparents. Two of my siblings also have children with health issues. We, as a family, are no stranger to facing difficult situations with strength and perseverance. I had no other choice, but to push forward and make our life as best as it could be.

We spent the rest of April with our family and friends. We continued to receive countless messages from our families, my circle of bowlers, former classmates, former co-workers, and many other people. We looked for our new normal. We went grocery shopping and let the boys play as much as possible. We had many visitors and we were lucky enough to be the recipients of food deliveries! This allowed us to focus on the boys and getting our lives back.

Some of my most difficult moments were when I had give my Mom friends at a playgroup we attend the news. I hadn't seen them since 2 days before the MRI; when we were all under the impression that nothing serious was wrong. It was heartbreaking knowing I had to go into playgroup and tell my them (some of whom had young, healthy babies) this crazy news we were given. It's just a lot to digest.

Nathan had a few rough nights of sleep toward the end of the month, but nothing that we weren't already used to! Benjamin also came down with a sinus infection and an ear infection. Life certainly moved on.

stacking blocks

Nate going for a ride

that giggle!

the boys taking a walk

Ben flying his first kite ever!

 

 

 

Ben golfing