March & April 2015

March of this year started out well. We took our annual March trip to Florida and were able to share some of the trip with Stephen's brother, sister in law, and niece, which always makes for a fun trip. We spent time at the pool, at Lego Land (Ben's favorite place in the world), and went on a new adventure to a drive through safari which the boys absolutely loved. Nate, behaviorally, did well on this trip...sleep patterns were the same, and he started to refuse peanut butter sandwiches, which was one of his staples. This was a little disheartening as he eats approximately 10 different foods so taking that out of the diet was tough to watch. Looking back, the one thing that sticks out in my mind was driving to the Vero Beach outlets. It started out like any other morning. We were almost there and I heard a funny noise so I turned around to look in the back seat and see Nate throw up all over himself. He never said he didn't feel well nor would I have ever thought that he would get sick. So, we pulled in and I went straight into Carter's to get a new outfit for him. Poor kid! He didn't get sick the rest of the day so we just kept a watchful eye on him and he seemed fine. Oh, the thoughts that go through your head when your kid with a brain tumor and hydrocephalus throws up randomly.

Nate decided he wanted in on the action too!

Safari waterpark

  

Nate actually wanted to go on rides this time! Yeah!

The rest of March was full of only good things! A friend approached me to do a fundraiser for Team Nate the Great (PLGA Foundation) and I was beyond flattered. Through her sales, she ended up raising a good amount of money that we were so proud of! We also were able to conduct a paint night fundraiser at a local elementary school. Stephen's cousin came to us in February and wanted to run this fundraiser in conjunction with her school's yearlong compassion theme and raise money for Team Nate the Great. She had such lofty goals and did not disappoint. Through the help of friends and family, local businesses donated raffle prizes, and we were able to raise over $2500 for Team Nate the Great and the PLGA. It was an absolutely amazing night and one that I'll never forget.

our sign

We had just under 100 painters!

To top off our good news, my Mom was recognized by her local church and the archbishop of CT with the St. Joseph's medal of appreciation. I couldn't be more proud of someone in my entire life. If you have met her and spent any time with her, consider yourself lucky. She is beyond special.

the medals

April of this year was interesting. After a brief trip to Connecticut with the boys while Stephen was in Florida, I woke up to Benjamin in my room telling me his arm hurt. I quickly looked and found a large blister on one of his forearms. It was the strangest thing I've ever seen! Then, as I was putting his shirt back on, he said his other arm hurt too. I look, and there was another blister, except this one was bigger! What the heck! The blisters looked like something you would see after someone was burned, except that he was sleeping when it happened. I texted some pictures to my sister and Mom; they thought it was weird too. I ended up just covering them up so they wouldn't pop until the pediatrician's office opened. They took him right in and decided to pop them and test the fluid since he hadn't been near anything hot that would've caused them. The tests came back empty and the doctor thought it was just a one time thing. If it's a strange and weird health issue, it happens in our family!

blister #1

blister #2

tough guy!

The anniversary of Nate's diagnosis (4/12/13) came and went. It didn't hit me as hard as it did for the first one. I feel like he's doing well, looks good, and has come so far that it was something to celebrate, not something to be sad over.

I was thinking it might be time to start potty training. If I've learned anything about Nate, is that he does things on his own time, in his own way. I knew it was going to be tough, but man, this kid is stubborn! :)  The beginning of potty training was interesting, to say the least....he wasn't going to be one of those "3 day" kids, that's for sure.

Easter egg decorating

Nate thinks he can drive the ranger

silly boys!

A new year...2015

I finally made it to updating 2015....thank God! I never thought I'd get there with everything that has gone on (in real time!).  January of this year started off with a bang...and not a good one. We were still dealing with Nate's sleep issues, simply a reoccurring theme in our life. Some days I let it get to me, most days, I'm just used to it. I'll take a full night's sleep when I get one....once a month, maybe???

I woke up on January 13 and for the first time in my life, I felt like I was unable to breathe, and unable to take a full breath. It was scary and I had no idea what was happening. The feeling went away and I attempted to go on with my day. Not a smart move. After about an hour, I was able to drive myself to the doctor. As I was sitting in the waiting room, I started to feel weak so I got up to get a cup of water. Again, feeling weak and queasy, I walked into the bathroom and fell to the floor. I don't think I passed out, but I definitely walked in there and found myself on the floor. Not fun. A nurse walked by and realized I was sitting on the floor. A little embarrassing, but at least she found me conscious, right? :)

When I was able to stand up, I was walked to an exam room. The doctor went through all the normal tests and decided I had walking pneumonia. Fun! I called my Mom on the drive home and asked if she could come up and help out with the boys (thankfully, she lives less than 2 hours away). She was on her way before we hung up. What a lifesaver! I got home and crawled into bed. Little did I know that this wouldn't be the most exciting part of the day.

After my Mom got to our house, Nate decided to trip, fall, and slam his chin into a step. It was decided that it needed stitches so I got dressed and went with Stephen and Nate to the ER since we all know how much Nate loves going to the doctor! My Mom stayed back with Ben, who at this point, was feeling feverish. Nate did surprisingly well at the ER. They took us back quickly and we decided that although he did need stitches, glue would do the job just as well. It wasn't worth trying to hold him down to numb his chin before the stitches went in. I'll apologize to him for the scar later. :)

Thankfully, all the drama from the middle of January subsided within a few days and we were all feeling back to normal soon. We were, however, extremely disappointed to have missed an event in Boston that we were invited to because of the fundraising that we were taking part in for the Pediatric Low Grade Astrocytoma Foundation (PLGA). It was the Annual Scientific Advisory Board Meeting and Family Poster night presented by Nate's doctor and the researchers at Dana Farber. We had been looking forward to it since we received the invitation and were bummed we couldn't go. Hopefully, next year!

February wasn't as eventful as January, thankfully! I was finally able to take a trip with my girls from Baltimore and went away for a few days. The four of us had been talking about this trip for years and I had never felt comfortable leaving Nate. The time finally arrived to go and what happens? A snowstorm, of course. Big surprise. Thankfully, my flight down was still able to take off and I was able to meet them in Baltimore before heading off to Florida. The trip was exactly what I needed. The flight home was just as interesting as my original flight was cancelled due to another impending storm. Thankfully, I was able to get on another flight. After being delayed for several hours in Baltimore (and 2 books later), I finally got home.

On February 13th, Nate woke up and yelled for me which is pretty typical of him. I walk in the room, he sits up, and throws up. Not good. Any parent of a child with a brain tumor and/or hydrocephalus knows what this can mean. It's hard not to let your heart drop into your stomach and think the worst. I clean him up, but he continues to vomit. While I'm holding back tears because I know what this can potentially mean (for those of you that may not know, vomiting is the first sign of hydrocephalus; for Nate, this means that his ETV can close and is a life threatening situation). He finally stops and I get him ready to hang on the couch all day. He is definitely not himself so I put a call into the pediatrician. At this point, so many thoughts are running through my head. Do I just call his pediatrician? Do I call Boston? His neurosurgeon? It's so difficult to remind myself that this could just be a stomach bug. This could simply be a normal kid thing.

The pediatrician wanted to see him because of the vomiting. I was happy to bring him in. I mean, I walked through all of the typical neurological tests that I knew of, but it would be nice for a doctor to do it too. After seeing him and doing a strep test (which he had!), the doctor felt comfortable enough to say that it was simply strep and that he didn't think we needed to go to Boston and that he would send his notes over to them. Thank God. I love every single doctor that we have and feel so thankful that they know Nate and understand our situation.

After those 2 months starting off 2015, I knew it had to get better! And, it did.

December 2014

Welcome back! I decided to take the summer off from writing as it was a crazy, emotional (more on that later), and busy summer! But, now that the boys are in school, I've decided to come back and continue our story. Thank you for joining our family on this journey.

We've hit December of 2014 in Nate's journey and the dreaded 4 month scan. After all of the emotional turmoil that May's news (potential treatment) brought and then going on a high after August's news (no treatment), we were ready to get this set of appointments over and done with. As usual, I met with Nate's ophthalmologist the day before the MRI in Boston. She is a super sweet doctor who is made to work with children. She sings his favorite songs with him; how could he not like her??  We started off with great news....eyes are good, optic nerve is normal, no damage from the hydrocephalus. All good things!  We left super early the following morning to head back into Boston for his MRI. Everything went as smooth as can be; sedation was quick, recovery went well, and the follow-up clinic was on time.

waiting to be called back for his MRI

After meeting with the team, we heard the news we were waiting for....STABLE. That's all we ever want to hear.  It's always incredibly difficult to wait; even if it's only for a few hours once he leaves the MRI machine. Fellow brain tumor parents can understand, but unless you're in the middle of it, there's really no feeling to describe the agony of waiting to hear those words. We are so thankful that we're in a place where we hear results on the same day; we know many families that have to wait, sometimes up to two weeks for results! That is not okay.  I am including a picture of Nate's December scan at the bottom of this post. I went back and forth on whether to include it, but I think it's important for people to see it. It's a real reminder of what's going on in his head. Most people see him as a healthy, happy, and funny little boy. He IS ALL of those things. But, there are days that the image of his MRI will creep into my head and remind me of what we deal with everyday. I've gotten to the point that most days, I don't even think about it. Then there are the days it's all I think about. So, if you don't want to see the image, don't scroll all the way down.

It's always nice to read text messages and Facebook posts from people that are thinking of Nate and praying for us to get through the day with positive news. I will never forget one particular message from a friend in Baltimore after I posted Nate's results.  She said that she was waiting to hear the news and felt like, "it was a present for all of us." Those words will stay with me forever. I know we are not alone in this. Although it's hard for people to grasp what we feel on a day to day basis, it's always nice to know that we have a supportive network of people from all over that just want Nate healthy.

It was great to be able to leave Boston knowing that Nate only had one more appointment to get through and we could start enjoying all the wonderful things that December brings: basketball for Ben, ice skating, snow, Christmas, and specifically Ben's 5th birthday! Playing basketball and learning how to ice skate were new things for Ben and watching the excitement on his face was well worth it. He is such a terrific kid and has had to deal with too much at his age. Things he shouldn't even know about. It's definitely a struggle to find a balance to make sure they both get what they need emotionally.

Ben taking a break from ice skating

Happy 5th birthday Benjamin!

Nate and I met with the sleep consultant and his ENT doctor on the same day a week after his appointments. Because his sleep was improving slightly (he had been getting to 9 hours straight at night!), she decided to tweak it a little bit and see what happens. The ENT was quite impressed with him too. She felt like he was becoming a better patient which is always something good to hear! She worked on his left ear a little bit, which was absolutely terrifying for him, but we got through it. And the verdict was in....NO doctor appointments for 6 months! No trips to Boston. No trips to Waltham. What a fantastic time for Nate!

We were also very exciting to learn that we had hit the $30,000 mark in our fundraising efforts for Team Nate the Great. Team Nate the Great (click the link to check it out!)
It's a wonderful opportunity to help other families dealing with a brain tumor diagnosis. The funds raised go straight to research, and Nate's doctor/team are direct beneficiaries of the monies raised.  What a way to end 2014!

The following image is of Nate's December scan. If you're not familiar with imagery of the brain, the white "blob" in the middle of the picture is the tumor.

Fall 2014

 

Superhero Central!

The fall was a busy time. Nate’s sleep was still a work in progress. In October, he continued to wake up multiple times a night and wake for the day earlier than the birds. It was beyond frustrating because when a kid doesn’t sleep, they are miserable for the day, especially Nate. He was starting to make strides behaviorally and I wasn’t ready for him to take a step backwards.  During that time, we also, on the advice of our pediatrician, removed cow’s milk from his diet. I dreaded that day as it was the only thing he would drink other than water. But, after all of the bouts between constipation and diarrhea, taking Miralax on and off at the beginning of 2014, it was time. It didn’t take him that long to begin to realize that water was the only option at that point. Plus, his stomach was thanking him. He was no longer going 8 times a day!

In October, we announced that we were teaming up with the Pediatric Low Grade Astrocytoma Foundation (A Kid’s Brain Tumor Cure Foundation) to help raise funds to pediatric brain tumor research. We officially created Team Nate the Great and began fundraising. We were excited that our simple bracelet idea was transforming into this. We, at that point, knew how lucky we are with the prognosis that Nate has. Our job now is to spread awareness and help find a cure in any way that we can. Team Nate the Great

We continued through the fall with all of its beautiful activities….apple picking, pumpkin picking, Halloween, and getting ready for Thanksgiving. The boys love to spend their days outside as much as possible and we were finally excited for Halloween! Benjamin decided to be Luke Skywalker and Nate was, of course, Pete the Cat. If anyone knows him, knows of his love for Pete the Cat and those groovy buttons! :)  Benjamin was so very proud of himself for finally going Trick-or-Treating. He was always a little too scared to go previous years, but this year, he was determined to press those bells and say, “Trick or Treat!.” Nathan even accompanied him up to some of those doors. It’s amazing to watch your kids grow and thrive, even for the silliest reasons.

playing in the leaves

walking the rail trail

pumpkin picking

Add caption

The beginning of November, we finally caved and met with a sleep consultant in Boston. They reviewed all of my endless data (I may have an issue with data collection!), decided to tweak his schedule, and told me that it was imperative to be strict about it. Yeah, we’ll see! :) So, his new bedtime was 10:00 at night and he was to be woken (if he was still sleeping….ha!) at 6:00. He needed to nap from 12:00-1:00 and that’s it. No more, no less. Strict. He was not a fan of the new schedule. Waking him up from the nap was torture and most days was ready to fall back asleep as soon as he left his room. Not fun. 

We had already planned to go to Florida during the second week of November, which meshed well with that new sleep schedule. Just kidding! But, we made the best of it and worked around that nap schedule as best as we could. We decided we were finally ready to attempt a theme park. Legoland had opened recently and we knew that Benjamin’s eyes would bug out of his head and he deserved a day that belonged only to him. He was beyond excited!! He went on every single ride, even the roller coasters! We were incredibly proud of his bravery as he stood in line, not hesitating at anything. He was the happiest he had ever been. All the while, Nate spent his entire day in the stroller, wanting nothing to do with any of the rides; which, worked out perfectly because then we each got some one on one time with Benjamin. In the last 30 minutes of us being there, Nate decided he was ready to try 2 rides. He got out of the stroller and went on 2 rides in the Duplo section. Benjamin was so proud of his little brother!

Nate is silly!

Cool kids!

Back to the sleep….the doctor wanted an update after 2 weeks with the new schedule. By November 17, Nate was averaging 8.5 hours of sleep during a 24 hour period (3 year olds typically average 11.25 hours). He was averaging 6.5 hours straight (3 year olds typically average anywhere from 9.75-11.25 hours). So, we were still a little behind, but he was making progress. On a brighter note, we hit the $17,000 mark in our fundraising efforts for Team Nate the Great and the PLGA! This was the news we needed as we headed into December and the dreaded 4 month scan.

                            “If you always give, you will always have.”

September 2014

apple picking

Before I begin the next chapter of our story, I would like to thank those who have been reading our blog and joining us on our journey. It’s sometimes difficult to open up our lives to potential scrutiny, but it’s been nothing but a positive experience so far. It’s always nice to hear that someone has learned something new from reading our blog or that they have gained a new appreciation for the unknowns that some families go through. I consider our journey only a slightly bumpy one. It’s hard to put into words sometimes how far Nate has come, or even as far as we have come as a family. There are always days that are more difficult than others, but we are starting to enjoy many more happy days than tough ones. A day at a time; that’s all we can do!

September of 2014 was a busy month and full of changes for all of us! We finished off the month of August celebrating our 6th wedding anniversary at Tanglewood listening to Josh Groban. We took my Mom with us as a way to thank her for all of her support over the past year and a half. She absolutely LOVES Josh Groban and it was and still is a priceless memory to have. Nathan finished his time at daycare and at early intervention.  He could not have made the strides he did without these two programs in his life. Daycare allowed him to practice being away from me and lessened his anxiety levels each day. Early intervention, although a slow process for him, allowed him to play with another adult and learning some very important coping strategies when dealing with his anxiety. Although we were all sad to see this part of his life go, we were all excited to see him off to his next challenge: pre-school! It was helpful that he had already been watching Benjamin attend preschool and everyone knew him there. It was a friendly and familiar place.

First day of preschool!

We celebrated Nate’s 3rd birthday twice: once with all of our playgroup families and once with our family. Every birthday celebrated is a little more special now.

Happy 3rd birthday Nate!

Nate continued to learn new things and started taking more chances. He finally took a ride on our utility vehicle and even took some swings with a golf club. Benjamin was very happy for Nate about both of them! He began to love washing his hands (almost to obsession) and started jumping off of things (a normal thing for most 3 year old boys, but huge for Nate!). 

Let the jumping begin!

first ride on the ranger

His sleep patterns were not getting any better and we were starting to lose our minds! Toward the end of September, we had two scary events. The first was when Nate fell 5 feet backwards off of the playscape at the park. It still takes my breath away when thinking about it. It’s one of those things that, as a Mom, happens in slow motion and no matter how quickly you move, you can’t stop it from happening. He landed directly on his back and the back of his head. Thankfully, he calmed down within 15 minutes and was ok. I put in a call to his pediatrician regardless. They didn’t want to see him unless he was showing signs of a concussion or something else, which he never showed so we made it through that one unscathed. Two days later, he fell off the couch and began to complain his arm was hurting. We decided to make a quick run into the doctor, just to be sure it wasn’t broken. Thankfully, it wasn’t and they didn’t make us to an X-Ray either! We finished off the month with a successful post-surgical follow up trip to the ENT. His hearing was good and the tubes were in place.





We also decided to design gray bracelets in honor of Nate. On one side, they said, "Nate the Great," and on the other side, "Strength Courage Hope." We hope to start raising some funds for pediatric brain tumor research. We raised $600 in the first two weeks of ordering the bracelets. Simply amazing!

a beautiful picture given to us by our cousins who are all wearing Nate the Great bracelets

 
“Life doesn’t get easier or more forgiving; we get stronger and more resilient.” - Dr. Steve Maraboli

August 2014

We're slowly getting there to get everyone caught up to real time. We're hoping to consolidate some "boring" (ha!) months to get to where we are today. If this is your first time visiting us, please take some time to start from the beginning to see what we're all about! :)

August ended up being a very busy month and a turning point in our journey. Nate began the month by sleeping 9 hours straight! Whoo hoo! Those nights usually come around only once in a while, so we enjoy them when they do come. The first weekend of August brought a pro tour event in Rhode Island for me.  It was a nice distraction before the upcoming appointments and scans for Nate in Boston.  I bowled well on Saturday and had to get back in the car to drive back home as we had tickets to Tanglewood that night. If you are ever in our area of the country, in the Berkshires, please take the time to take in a concert at Tanglewood; absolutely beautiful! The next morning, I had to hop back in the car super early and head back to Rhode Island to bowl again. I bowled well and made the ladder. I didn't win, but at the same time, I did. I lost track of the amount of people that stopped me over the course of the weekend to let me know that they were thinking about us, praying for Nate, and sending their support for the upcoming week. It was a welcome distraction to the dreaded scanxiety.

our night at Tanglewood

Tuesday arrived and we headed out to Boston. My Mom made the trip with us in hopes that she could hear good news since she had to hear the bad news during May's visit. Plus, we were making a little vacation out of it and taking the boys to Lego Discovery while we were there! Nate had an appointment with the pediatric ophthalmologist first. We were beyond nervous for this appointment. After hearing our dreaded news at May's appointment, this was our first glimpse into what could possibly happen the next day. We had to head in to get Nate's eyes dilated. If you've done this before, you know that it takes about 30 minutes to kick in.  While we were in the waiting room, we got a special surprise. Two of Stephen's former volleyball players, who have since become part of our family, sent Nate a VERY LARGE bouquet of Dum-Dum lollipops. If you don't know Nate, his obsession at that time was to go through an entire bag of lollipops and unwrap each one. He wouldn't eat any of them. Just unwrap each one and then demand each one to be re-wrapped. When he saw this bouquet, we thought his eyes were going to pop out of his head! What an amazing gift to receive! Here we are, sitting in a waiting room, nervous beyond belief, anxious to hear what could be bad news, and we receive this light in the form of lollipops. It was hard not to cry.

Check out those Dum Dums!!

His vision was perfect. Just the news we wanted to hear. Her recommendation to the team would be no treatment. Perfect. That's all we needed to hear to get out of the hospital, get some lunch, and head to Lego Discovery. Ben was beyond excited! We spent a few hours walking around and playing with Legos. Ben went on his first "official" ride and all of us watched the 4D movie. Another milestone for Nate! He was able to sit through a short movie without getting overwhelmed. Score!

Legos, legos everywhere!

We went back to the hotel and ordered room service for dinner. We had to be up super early for check in for the MRI. Because Nate has to be sedated each time, he can't eat or drink after midnight which can be quite difficult for him. We do our best to keep him distracted until he wakes up in recovery. That morning, sedation and recovery went well. We've been extremely lucky with Nate in recovery. We hear stories all the time that some kids don't handle anesthesia well and wake up like a different person. Well, thankfully, Nate has done well so far. Knock on wood.

ready for the MRI

Before heading over the Dana Farber, we have lunch at Bertucci's. It's a quiet lunch as our thoughts are stuck on the impending appointment and news. All we can do is pray at this point for stable. After lunch, we head upstairs to the Jimmy Fund clinic for our follow-up with Nate's team. If anyone's been to clinic before, you can relate to the waiting game. It's tough! We sit and wait. Nate plays on the iPad and dances his little heart away. The nurse walks in and asks for an update on how he's been doing the last 3 months. We answer and do the little chit chat while waiting for Dr. Kieran to walk in. He does and you can feel the collective sigh as we hold our breath while we wait for the MRI pictures to load. Again, we know how lucky we are to be able to hear results the same day as the MRI is done. Not everyone has this opportunity. He looks at us and says, "Everything looks good." We collectively breathe. But, at the same time, we know that "looks good" can sometimes be a shady term. We ask for further clarification. He says that although Nate's tumor has grown slightly (as in millimeters), it doesn't require treatment at this point, and hopefully, never will. It was difficult to be excited after what we heard in May and the rollercoaster of emotions that we've been on for the last 3 months. It is absolutely terrifying to allow other people to make a decision that can ultimately harm your child. We are trusting him and his team with the life of our son. We have to. We don't have a choice. So, despite his suggestion of spreading out the MRI's to 6 months, we agree to 4 months. At that point, 6 months just seemed like too much for us to handle. He understood that and had no issue with staying at 4 months. Thankfully, he gets it.

After a long 2 days, we get in the car and head home. Sometimes it's quiet, just trying to soak in all of the information that was given to us; other times, we cry. We laugh. We decide to get away for a few days and go to the beach. The four of us ended up going to York Beach, ME for a few days later that week. We had a blast watching the boys play in the water and jump in the waves. We were able to eat in restaurants (a big deal!), and simply enjoy life. It was exactly what the doctor ordered. :)

"There is always, always, always something to be thankful for."