May 2015

May is always an important month in the brain tumor world. It's Brain Tumor Awareness month, marking everything with the color grey and filling people's worlds with brain tumor facts and figures. Such a lovely thought! :)  Along with Nate's fundraising page (Team Nate the Great), we've also had grey bracelets on hand for anyone who wants one to support our cause. As of November 23, 2015, we've raised almost $37,000! A Kid's Brain Tumor Cure Foundation (http://akidsbraintumorcure.org/) has been instrumental in raising funds for research for a pediatric brain tumor cure. The funds go directly to doctors that are doing cutting-edge research in our kid's lives. It's an amazing organization that we are proud to be a part of.

May of 2015 was a busy month for the boys. Benjamin was pumped to start T-Ball. He had been waiting all year for this moment and he took advantage of every moment.


























We opened the pool which is always the boys' favorite day of the year. Despite the cold pool temperatures, they both jumped right in. Crazy. 

First time in the pool for Benjamin

First time in the pool for Nathan

At the end of the month, we were able to celebrate Nate's "graduation" from his 3 year old program at pre-school. Super cute! And, also, Benjamin "graduated" from the same pre-school. It was a bittersweet moment as he spent 3 years at this school and would be starting kindergarten in the fall. All very good things!

Ben at pre-school graduation

Nate dancing away

Ben & Nate before graduation

May was also the month for Nathan's next set of appointments. This was the longest stretch of time in between scans. To say that I was nervous was an understatement. It's never easy to go into "MRI" time, but I was just looking forward to getting it over with, regardless of the outcome. Nate's first appointment was on the 26th with his neuro-opthamologist to check his eyes and optic nerve. He and I made the trip to Boston alone. He was so proud to be able to sit in the chair all by himself. If you've been keeping up with his story, you know that's huge for Nate! I was so incredibly proud of him, as was the doctor. His eyes were perfect and his optic nerve remained unchanged. She was hoping that we would be able to switch to yearly appointments once we got past the next MRI.

sitting in the chair at the eye doctor all by himself

The MRI was on the 27th so we made the trip back into Boston the next day. He had to take the gas mask again for the MRI (some day we'll just do the IV...). The MRI went well and recovery was smooth. We always have some time in between the MRI and the brain tumor clinic at Dana Farber so it was such a sweet surprise whenever I opened my Facebook page to see all of the beautiful pictures of our friends rocking their grey T-Shirts, their Nate the Great bracelets, and reading all of the wonderful, supportive comments. I don't think anyone even realizes how those things get me through scan day. I would not do well without it.

Finally, it was time to head to the Jimmy Fund clinic and get Nate's results. If you are in the brain tumor world, you know how important it is to hear the word "stable." That's all we look forward to hearing. We know that it won't magically disappear one day (but damn, how nice would that be!) so all we look for is stable. And we got it! Tumor looked good, ventricles looked good, Nate looked good! No complaints here. Their recommendation would be to scan again in another 6 months and then hopefully, if all went well in November, we would go to yearly scans. Whoa!

Nate after recovery giving the thumbs up!

Stable!

Bring on summer!

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

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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.”