4 months have gone by....

As usual, the last 4 months have absolutely flown by. It always seems like I blink and life just keeps on moving; sometimes quicker than I'd like it to. There are definitely days that I wish would end quicker than they do though! The boys started school in late August...Ben in 2nd grade and Nate in Kindergarten. They are both loving their teachers and school in general. Nate is proving to be one smart cookie, just like his big brother! :)

1st to 2nd for Ben

Pre-Kindergarten to Kindergarten

Nate turned 6 in early September and the 3 birthday parties he had proved to be as great as he is. Pool parties at home are always the best ones. He was flooded with love (and board games, of course!) from both sides of the family as well as his friends, which he loved every minute of.  Most of the fall was filled with soccer games (for Ben and for my nephew Trevor at RPI), flag football, yoga, a new drumming class for Nate, and an unbelievable amount of time with my brother. So lucky!
We were also held hostage (metaphorically) by the blood drawing station at our local hospital for a week. Nate had an initial urinalysis (due to excessive thirst) done during his 6 year well check visit and the results came back abnormal, so blood work and further urinalysis ensued. The blood drawing station ended up getting the paperwork wrong 3 times, one of them being way too early on a Saturday morning. Ugh! But, the craziness was all worth the wait...everything checked out normal and it just seems as though Nate loves water. 100+ ounces a day to be exact.  I, myself, finally went to the surgeon to check out my ankle. For those of you that don't know, I've had issues with my ankle since an injury that I had when I was a 14 year old kid playing soccer. The outcome of that appointment is the suggestion of an ankle fusion. I say suggestion because an ankle fusion would likely mean no bowling for me. And no bowling for me would equal one unhappy lady! So, I quickly decided on a cortisone shot (which has been holding up for almost 4 months now!) and passed on the surgery; for now anyway.

Happy 6th birthday!

Ben playing soccer

Ben playing flag football

the boys bowling Mom's version!

they messed up the blood work again??

the boys watching their cousin play

September quickly turned into October and with that came the decision to get a puppy. Lincoln has been gone for almost a year and a half and I thought it was time. A high school friend had bred her boxer and it was basically fate that I saw it on my Facebook timeline. See, Facebook is good sometimes! ;) It felt like it took forever to name the little guy, but we decided on Kingston. He is currently proving to be quite the King of the house.

Between September and October, Nate tried 2 foods...a tater tot and a banana. Neither has been added to his diet (his words, not mine), but he is really trying to push past the anxiety to find a new food to add to his repertoire.

October finished off with the start of hockey for Ben (which I love because it's definitely one sport where you can witness improvement from practice to practice). Halloween was super fun; Ben decided to be a Stormtrooper and Nate was Catboy from PJ Masks. October was also the month of the best sleep ever for Nate. I held onto every night as he made some great strides. It may have been a jinx though, as his sleep as been a struggle since then.

trying the banana

pumpkin picking

Halloween

baby Kingston

We kicked off November with a challenge to our Team Nate the Great supporters. We decided to match every donation made in November and December, up to $3,000. It took off and we raised over $1,000 during the first week. Through those 2 months, we hit $3,000 and beyond! It's been an amazing year for our fundraising efforts and we couldn't be more thankful for our family, friends, and their children to help us in our fundraising efforts. We are currently at just over $79,000!!! I am speechless when I see that number. The people in our lives are beyond generous. You are making a difference in the pediatric brain tumor community. If you haven't checked out the page recently, please head on over to Team Nate the Great and take a look. It will make your heart smile.

We continued on with November and the start of basketball. Ben and Nate both decided to play this year so between hockey, basketball, and my new part time gig (I was given an opportunity I couldn't pass up!), we basically live at the Club. November was also MRI month. To say I was nervous was an understatement. It is hard, REALLY hard, to go an entire year without knowing what is exactly going on in that little (okay, it's not so little!) head of his. I can always hope that things are going well based on how he is acting and thriving, but damn, it's hard not to have little negative thoughts creep in; especially around scan time.

Before the scan, Nate had already decided that he did not want to use the mask for sedation prior to getting the IV. He and I had multiple conversations about it and I told him that he needed to stand up for himself when it came to the nurses and doctors. This was HIS life and there were choices he needed to make. I know that probably sounds a little crazy for a 6 year old, but we've been on this journey for almost 5 years (crazy, right?!) and he knows what to expect and what he doesn't like about the whole experience. Well, needless to say, he was a champion that day. He spoke up and told nurse "Kate" that he did NOT want the mask and what did he have to do to not do it. As she looked at me with furrowed brow, I told her that this was his decision and if he didn't want to do it, she had to tell him what was expected of him. She did and he quickly decided he was ready to just do the IV. We couldn't have been more proud of him! He handled the IV process like the brave boy he is and even watched the whole thing. He sailed through the MRI and we waited for him to wake up in recovery. As soon as he did, he asked me what his recovery nurse's name was. I asked him why and he responded, "I want to get out of here!" Ha! Her name was Molly and he summoned her over like she was his best friend. He's lucky he's a charmer. :)

Our next appointment that day was with his neurosurgeon. We were looking forward to seeing her as it was the first time we would have an actual appointment in her office and not at the Jimmy Clinic in a few years. Unfortunately, it didn't work out as planned since she had an emergency in the operating room. That was disappointing, but the news that followed was even more heartbreaking. Since she wasn't there, we were able to see her assistant. There was definitely a communication breakdown, as well as incomparable pictures, and we left there thinking that the tumor had grown. She had attempted to be positive about this growth, but as brain tumor parents can attest to, as soon as you hear the word growth, the world starts to crumble around you.

We took Nate for lunch before our last and final appointment at Dana Farber. The time seemed to drag as we were devastated with this news and we were anxious to meet with his neuro-oncology team to get their version of the scan. As soon as his doctor walked into the room, she sat down and said, "his scan looks great!" Based on our facial expressions, she asked why we didn't look happy. We explained to her what we had heard earlier and she was speechless. She showed us the scan and compared it to the a scan from each of the past 3 years and explained that although he has experienced growth since diagnosis, his tumor is currently considered stable. Again, hard words to hear and digest, but we have to trust in his team that they are the best the pediatric brain tumor world has to offer. She even gave us a high five as we left in an attempt to make the roller coaster ride a little less scary.

It took a few days to come off the emotions of that day. Scan days are never easy. The anticipation and anxiety can truly take over your life. It was also really hard to be happy over the results when getting there was so emotionally tiring. I pray it never goes that way again.

The rest of November was kind of blur. We had Thanksgiving in Connecticut that was followed by a hockey tournament that weekend for Ben. All good things to soak in and enjoy. We have so many things to be thankful for!

Onto December...it has basically come and gone! We enjoyed all of the things December has to offer...snowstorms, cold weather (okay, I'm not really enjoying it at all), Christmas decorating, parties, food, and best of all....Ben's 8th birthday!! I love the birthdays of the boys! He was so excited to turn 8. So old! :)

2017 was a great year for so many reasons. I am looking forward to turning the calendar page and making 2018 a wonderful year. Thank you all for loving Nate and our family. We could not be on this journey without you and your support.

Oh what a summer!

Looking back, June started off to what could have been a very scary month. Nate was experiencing strange symptoms that was causing his teachers and us, alarm. After back and forth conversations between his neurosurgeon and his oncologist, it was initially decided to do a scan, 5 months early. However, as his symptoms eased up a bit, we started to feel a little more comfortable with waiting. We decided to cancel the scan in the hopes it was all just a freak thing. Well, we've made it to August and haven't had to call a doctor one time. What an amazing feeling! That's not to say he still doesn't do some weird and quirky things, but the feeling is more like it's not the tumor or any related pressure causing the issues. It's just that he's a quirky kid. ;)  I'll take that any day!

We finished off the busy month of June with both boys finishing school and completing Ben's baseball season and Nate's soccer season. July was right around the corner since school ended so late this year, due to all of the snow days. Before we hit July though, the boys were able to play some mini-golf, we had my family up from CT, I went to Baltimore for a bowling tournament, we had friends over to swim & play, and Ben participated in a golf camp.

tie-dying shirts

the finished product!

Ben's golf camp

Nate's first flower from his garden

ready, set, go!

July, as always, was an incredibly busy month. The boys had a list of things they wanted to do, and because I'm lucky enough to be able to stay home with them, we try to get them done! Not everyone has the ability to create a "go with the flow" schedule and I always try to show them not to take any of it for granted. To kick off the month, we threw a party for Nate's teachers and classmates at the house. It was a nice way to bring everyone together during the summer, and it was especially nice to be able to thank everyone for taking part in "Nate the Great" day at the school. As a Boys & Girls' club community, we raised over $1500 for Team Nate the Great! What an amazing feat!

We continued on by throwing the annual 4th of July party as well. The weather was perfect and the food was even better! Everyone seemed to have a great time. The boys were also excited to be able to go back to Tanglewood (If you don't know what Tanglewood is!) to enjoy the grounds and listen to James Taylor. It's something they both look forward to doing and we try making it several times a summer. We're lucky enough to have such a beautiful place right down the road.

hanging out in the trees at Tanglewood

7 years later and they both got t-shirts

As July continued on, ours days were filled with baseball games, tennis, day camp, Jiminy Peak (in case you haven't been here either!), a science show, swimming, boat rides, kayaking, and hockey for Ben. I also took a bowling trip to Baltimore. Nate did a week-long camp learning the Ukulele, which may have been the cutest thing ever! :)

Nate's growing strawberries

Ukulele camp!

enjoying a water slide at a birthday party

Ben's summer hockey

The boys and I finished off July with a trip with some of my close friends to Ocean City, Maryland. The boys were super pumped to go and spend time at the beach. It was nice for me to be able to experience a place where I used to go as a kid with my boys, especially with some of my best friends. We certainly made some memories in July!

Not only did we make memories, but some strides with Nate's food choices and willingness to try new foods. He knew that on June 1 (after the tonsil & dental surgeries were completed) that he would be starting to try new foods, hopefully on a daily basis. With lots of pre-teaching and lots of praise, he started to attempt to try new foods. I started to make a list of the foods he put in his mouth and swallowed. In your head, you're probably thinking, "Really? That's it?" But, this has been a long 4 years. He had not attempted a new food in four years. Yes, FOUR years. In the beginning of this trial period, he would put a piece of new food (the size of a fingertip) in his mouth, sometimes gag, sometimes chew, and finally swallow it. At times, it took him up to 30 minutes to finish. He also found it easier to watch himself using the mirror in the bathroom. (I told you he was quirky, right?) There weren't many limitations to what he could do or choose to eat; whatever works, right? By the end of July, here is the list of foods he tried:

oatmeal raisin cookie
1 pea
shredded cheese
1 grain of rice
cherry
asparagus
1 piece of plain penne pasta
1 piece of plain spaghetti
fried shrimp breading
1 piece of corn
banana
hot dog
salmon
chicken
pepperoni

By the middle of July, he had eaten an entire bowl of penne pasta. He was so excited! Ben was so proud of him. I cried. These days, it doesn't take much for me to do that when it comes to the boys and their accomplishments.

The sleeping situation continues to be a hit or miss thing. Between June and July, Nate slept through the night less than half of the time. He continues to sleep-walk and attempts to be stealth when it comes to trying to get in my bed. Based on the amount of sleep he gets, it's amazing that his personality is the way it is!

If you thought July was busy, August was just about the same....more next time! :)

"Treat a child as though he is already the person he's capable of becoming." (Haim Ginott)

Spring rollercoaster

Oh, what a couple of weeks it's been! Nate was a champion after his dental surgery. He even played soccer 3 days after surgery. He healed up quite nicely and the dentist was pleased with him at his follow-up. So, hopefully, no need to see him until December.  Once the surgery was over, the countdown to Nate the Great day at his school was on! He was beyond excited for this celebration and couldn't stop telling everyone how many days were left when it was getting close. It was incredible that his teachers and fellow classmates were just as excited!

Nate the Great day was more than I could've ever expected. In a short time, his teachers pulled off a beautiful morning for all of the children of Nate's school. They sent home a notice with each child that had a brief explanation of Nate's diagnosis and of the fact that it was Brain Tumor Awareness month. Nate's class came into the gym first. A donation box was placed on one of the tables; Nate and Ben stood proudly by that box and thanked every single child that walked in and gave a donation. It was overwhelming to watch and priceless to have been part of this special day. I quickly realized that it doesn't take a lot to make a difference in this world, and damn, these boys are destined to do their part. As Nate high-fived the kids, Benjamin stood by him like his protector, thanking the kids too. It was beyond sweet. All of the classes continued in and in no time, they were running around, taking part in each of the fun activities that were spread around the gym. Most of the families don't know Nate, let alone any of us personally, and probably not even by face. But, on this day, that didn't matter. Love and support filled that gymnasium and gave us a feeling of accomplishment. These last 4 years have been difficult, to say the least. That day made such a difference in our lives; I will think about that day for a long time to come. There aren't enough words to express my gratitude to the teachers of the Seed Program in the Children's Center at BGC, the director of the Children's Center, the employees of BGC that took the time to stop in the gym in say hello, and every single one of the families that allowed their children to be a part of a morning that was so incredibly special to my little man and our family. Thank you, thank you, thank you!

 The overwhelming piece of that day was that between the teachers, the employees, the board of directors, and the children & their families, they raised almost $1500 for Team Nate the Great!!!! What an amazing feeling!

We all left the building on such a high! I was headed to Maryland right after for a bowling tournament and was looking forward to having a good weekend with my friends. The drive went well, thankfully. As I was getting ready to bowl on Saturday morning, I got the news that Nate had woken up and threw up. Not the best news to get while I'm away, but I was hoping he may have just gotten a stomach bug from being around all of the kids the day before and it would pass. He never threw up again that day, but was tired the rest of the day; pretty typical for having gotten sick in the morning. We felt comfortable in the thoughts of it being a bug. As I always say, Nate likes to keep all of us on our toes....he woke up on Sunday morning and threw up again. There I was, a 6 hour drive away, sitting in the parking lot of the bowling alley, contemplating not bowling and just driving home. Then, the thoughts pour in...is it his head? Do we call Boston now or wait? Is it just a bug? Ugh....it never ends. It took everything I had to walk into the alleys and bowl. Thankfully, I did. Somehow I pulled myself together and won the tournament. It was my 23rd win on the WNDA. It's difficult, sometimes, to express what bowling means to me, especially now, as I don't do it nearly as much as I would like to. I bowl in less than 10 tournaments a year now. I don't bowl in a league. I try to take advantage of every opportunity I get to step on the lanes to accomplish something great. Sometimes it happens, and sometimes, it doesn't.  I have never taken it for granted and every single win means something, especially that one.

It was time to go home and figure out what was going on with Nate. I was truly concerned. Sometimes, I get worried for a bit about one symptom or another and it usually passes. I was worried and just wanted to see him for myself. He was sleeping when I got home, but it was still nice to get my eyes on him while he slept. The more we thought about it, the closer we were getting comfortable enough thinking it was simply a bug that caused him to vomit. We were able to enjoy Memorial Day and he continued to do well through Tuesday as well, each day made us feel better. On Wednesday, I dropped him off at school. I picked him up and the teachers said he had a good day. He was quiet on our walk down to the car, but nothing too unusual. We started our drive home and he didn't say one word to me from school all the way home. If anyone is around Nate for any amount of time, they would know that this is abnormal! He and I arrived home, he sat on the couch, and fell asleep in less than a minute. Again, out of character for Nate these days. So, my mind goes into overdrive. Putting all of the weird symptoms together, I put in a call to his neurosurgeon in Boston to get her thoughts. We didn't think 100% it was his head, but it felt better to get her opinion. She asked us to bring him into his pediatrician to do an evaluation and then we would decided if she needed to see him. His pediatrician wasn't able to see him until Thursday, which was a little frustrating, but understandable based on the time table. On Thursday, it was decided that he had the start of an ear infection, but we would wait on antibiotics to see if any of his symptoms worsen. On Friday, he went off to school as normal and when I picked him up, I had a conversation with one of his teachers about concerns they had about Nate, some of which we had concerns about too. So, again, putting everything together, I decided to put another call in to his neurosurgeon to give her an update. They decided that doing a brain scan would be the best option to rule out potential tumor issues. Heartbroken.

I understand fully why they want a scan done, but in my gut, I feel like it's something else. I have calls into some of his other doctors on his team to get their thoughts on what's going on (i.e. the limited vomiting, ear infection, forgetfulness, confusion, memory issues). The scan has been scheduled for June 27 with a follow up with his neurosurgeon on June 28. Until then, we wait.

Post dental surgery

First off, I wanted to take the time to simply say thank you. Thank you to the person that is reading this. Thank you for being part of our journey and wanting to be here! I could never adequately express how grateful I am to be able to share our story and hopefully make some sort of impact in your life and in those that you choose to share our story with. It's been a bumpy ride these last few months, in terms of Nate's overall health, but we are always thankful that crazy thing in his head remains stable.

As in the previous post, Nate was able to recover from his tonsil surgery quite quickly. If you know someone that has an issue with their tonsils and qualifies for a tonsillotomy versus a tonsillectomy, go with the tonsillotomy! The entire process is much easier than the tonsillectomy.

Nate had his pre-op visit on May 3 prior to the dental surgery he was scheduled for. Everything checked out this time and he was good to go. Of course, in pure Nate fashion, he started to not feel well on May 7, and vomits three times throughout the afternoon into the evening. All I could do is shake my head...this kid just can't get a break. He handled himself well throughout the ordeal and was fine by Monday. Of course, I start to think does he have a stomach bug, is his head bothering him, what else could it be? I wish I could just simply think it's a virus that he picked up, but nope, my brain doesn't operate that way, nor does his diagnosis allow me to do that. One of the downsides to having a child with a brain tumor and hydrocephalus.

Nate and I had to head into Boston on Monday for his 6 month follow up with his neuro-opthamologist. I love her. She is so good with him! His eyes are perfect, as is his optic nerve. She is allowing him to move to yearly appointments which is music to my ears!

Yesterday, May 17 was his dental surgery. The week leading up to the surgery were stressful, due to our insurance company denying coverage for the medical portion of the surgery. Long story short, our previous insurance company had already approved it, but our insurance switched on April 1. It approved his tonsil surgery, but denied the dental one. They are saying that our benefits do not cover anesthesia for dental restoration. The appeal has been made and now we wait. Either way, he was getting the surgery, whether we have to pay for it, or they do. Thankfully, we are in a position where we can handle it. I'm frustrated with the entire process, but the surgery is over and done with. My kid finally can be pain-free and hopefully, start eating a normal (whatever that is!) diet.

I was definitely nervous going into this surgery because he's always had everything done at Boston Children's Hospital and this would be an entirely new process for him. Everyone that dealt with him, from the woman at registration, to each nurse, to the anesthesiologist, down to the dentist, was absolutely fabulous! I couldn't have asked for a better experience for Nate. My many thanks go out to Berkshire Pediatric Dentistry and the Crane Center. The entire surgery took just under 2 hours. Thankfully, she was able to save all of his affected teeth. She was able to fill 5 teeth and only have to cap 2 of them. I was so happy that he woke up in good spirits afterwards and was his normal silly self by the afternoon. He is simply amazing.

I can only hope that today is the start of a long stretch of good health (and good sleep!) for him.

Since we are still in the middle of Brain Tumor Awareness month, I wanted to give an update. We are just under the $60,000 mark which makes my heart swell. If you are not affected by being in the brain tumor world, consider yourself lucky. I will always advocate and fight for those that are affected. This diagnosis has changed me in more ways than I can count and I will do everything in my power to help those that have it more difficult than Nate has had it as his situation can change in an instant. If you haven't already, please consider making a donation to Team Nate the Great

Also, there is another opportunity this month to help us help others. My lovely friend, Robin, has offered her commission up to anyone that makes a purchase from our event at Stella & Dot. If you click the link, make a purchase, a portion of your purchase will go straight to Team Nate the Great. Not only are you buying something cute for yourself (or someone else!), you are helping the pediatric brain tumor community. What's better than that????

And lastly, I have bracelets that say Team Nate the Great on them. If you are interested in having one, please send me a message, and I will mail one out to you!

Post-surgery, pre-surgery, Brain Tumor Awareness month

April seemed to completely fly by. I honestly feel like I blinked and it was May. Nathan had his tonsillotomy on April 20th. A tonsillotomy is where the tonsils are only partially removed and the last layer of tissue is left in the throat. Nathan needed his tonsils out (his adenoids have been removed twice already) due to obstructive sleep apnea. This was the best hospital experience for him thus far. He was calm and ready for the procedure. It sounds funny to say that since he's only 5, but I estimate that he's been under anesthesia about 15 times. If you've been following his journey, doctors haven't been his favorite people so to have an experience like the one we did, it's a step in the right direction since he'll never be fully removed from having to go. I can't ever say enough about Boston Children's Hospital and their staff. From the moment you check in until the time you wheel out, everyone is there to make the time you have to spend there as comfortable as it can be. It's priceless.

winning at Wheel of Fortune in pre-op

loving the clowns singing a "Nate the Great" song

in recovery, post-surgery

just needs Mama's hair

all done & ready to go home (he needed the ice pack for a split lip)

in the car, on the way home...thumbs up!

sleeping soundly the night of surgery

His recovery was somewhat seamless. He ate dinner the night of surgery. He had 4 "white eggs" (hard-boiled eggs), a bowl of chocolate ice cream, and a Popsicle. Not too bad for a kid who surgery in the morning! Friday and Saturday were also good days for him...he was able to play, eat soft foods, and be seemingly pain-free. On Sunday morning, he woke up and immediately threw up. As his mom, I don't think I'll ever get used to him throwing up. My thoughts usually go for "what's wrong with his head?" but I just attributed it to the trauma his throat had been through and the crap he was probably swallowing as his throat healed. He chose to spend the morning/afternoon on the couch (which is unlike him!) so I knew he wasn't feeling well. He perked up as the day went on and started feeling better by the time he went to bed.

taking a snooze on the couch

wanted to get some sun...lol

He took two days off of school and went back on Wednesday, April 26...clearly not too difficult of a recovery! :)  The kid is amazing!

Today, he had his pre-op appointment for the dental surgery that's coming in 2 weeks. It went as well as it could; of course he has fluid in his left ear. I'm hoping it doesn't turn into anything further, but if it does, it does. Can't really do anything to stop it, right? I can't wait until this part is over. I just want him to be able to chew and swallow like a normal kid. Maybe then, he can start to try more foods AND more importantly, sleep.  Yes, sleep!!! Speaking of that...April was rough! He slept "through" the night 5 times. And that means until 5:00. I don't know how he makes it through the day like he does. He's 0/3 in May too. Ughhhhhh! I'll sleep when he's a teenager, I guess.

I am also on a fundraising/awareness push for the month of May, which is Brain Tumor Awareness month. I am hoping to be able to get to at least $60,000 by the end of the month. I've had 3 people donate so far and am so very appreciative!! If you'd like to donate or share his fundraising page, please go to Team Nate the Great.
If you'd like a Team Nate the Great bracelet to be able to spread awareness, please send me a message and I'll mail one out!

A friend left this quote on Nate's fundraising page and I wanted to share it here.

"Whenever you find yourself doubting how far you can go, just remember how far you have come. Remember everything you have faced, all the battles you have won, and all the fears you have overcome."