Better Late than Never....

It's been over 6 months since I last posted an update. In the last post, we were getting ready for Nate's scan to be done in October. I thought I had written about his results from that scan, but it seems as though I never did. Oops!

Nate's annual MRI is usually in November. It was originally scheduled for November 1st, but I received a phone call asking if we felt if Nate was ready to try to complete his scan without sedation. He decided that he was willing to try it. He had a successful "without sedation" scan on Sunday, October 21 with the follow-up appointment with the brain tumor clinic on Thursday, October 25. The HUGE downside to switching to doing MRI's without sedation is that we didn't get the results on the same day. That made it four days of anxiety waiting to see if the tumor has grown, if he's experiencing any hydrocephalus symptoms, etc. To add to that stress, because his former oncologist left the brain tumor clinic in Boston, his entire team is now new to us. He saw a new neuro-oncologist and a new neurologist on that day.

The team walked in together, which for us, is usually not a good sign. If they come in separately, that has typically meant that things are stable and the follow-up will be quick. Unfortunately, that wasn't the case. His tumor showed growth. We were not expecting this news as he had been doing so well and had been on annual scans for 2 years. We were shocked. And sad.

They suggested that we continue on watch and wait, but go back to scanning every 6 months. The neurologist wanted to become more vigilant with his eyesight (which has always been perfect) and the potential damage to his optic nerve (which there is none). So, we left that day disappointed and frustrated. It was a long ride back from Boston.

Now, fast forward to today....Nate had another scan back on March 7, as well as a visit to the neuro-opthamologist. Both appointments went well. It was determined that although his tumor has changed shape slightly, they are considering it stable. They were confident enough to continue with another scan in 6 months, which will likely be in September. Although Nate continues to live life like he doesn't have a brain tumor, it is still difficult sometimes to adjust to the fact that it has grown. Once it was considered stable enough to go to annual scans, it got easier to not think about it every day; especially with how well he's doing in all aspects of his life. I guess it's just another bump in the road.

Life has changed a ton; the boys have been adjusting to life with Mom or Dad, not Mom and Dad. Once they got the schedule down, they've settled into their new routine. They're enjoying their time in both of their houses and look forward to seeing whomever they're headed to see. Clearly, a huge adjustment for all of us.

The winter season was filled with hockey for Ben and basketball for Nate. Both were such enjoyable seasons, especially Ben's hockey. He moved up a division, which was challenging for him and he loved every minute. His teammates became a second family and it was something we all looked forward to doing, especially Nate, who dubbed himself the team mascot.

Now that the spring season is upon us, it's baseball for both boys! Ben made a Little League team which is super pumped about and Nate is giving baseball a try for the first time. We're all excited for that. It should make for an interesting spring!

As I write this, I can't believe that today marks 6 years since Nate's brain tumor diagnosis! So much life has happened in those 6 years. We've met so many wonderful people and families since April 12, 2013. I've had several friends learn their children had brain tumors after Nate's diagnosis, all of whom lost their battle: Landon (glioblastoma), Tony (high-grade brain stem glioma), Lea (DIPG)...the boys talk about them and Nate's light will shine brightly for them, always. We've connected with A Kid's Brain Tumor Cure (which now works with the Pediatric Brain Tumor Foundation) to raise funds for pediatric brain tumor research. I am proud to say that we've raised over $80,000 since we started his page. I helped start a support group for parents, as well as adults that have the same diagnosis which now has members all over the world. I remember those first few days, weeks, and months post-diagnosis. What a fog I must've been in! I am humbled to be able to help parents navigate those early days, letting them know they are not alone on this journey. Nate is the prime example of how to live life with a brain tumor. He will never let anything stop him, and neither will his brother!

If this is the first time you're reading this page, you may want to check out earlier blogposts to help you understand how we got here. And thank you for joining us on this crazy journey we're on! 

And, if you're ever looking for a great place to donate, where most of the funds raised go directly to research and not someone's paycheck, check out Team Nate the Great 

 

The beginning of fall...

A short few months have passed since the last post. When I look back and reflect at what's changed, what's stayed the same, or what's about to change, I am always amazed how quickly life can move. Right after the last post, Benjamin had to make a visit to the ENT in Boston. He saw the same doctor that has done all of Nate's ENT surgeries because I trust her and love how she handles Nate. Thankfully, Ben isn't in need of surgery immediately; however, one more strep infection and out those tonsils come. I'm keeping my fingers crossed!

The boys were lucky enough to spend some quality time at the beach with Stephen's extended family up in York Beach, Maine. They always love this trip and look forward to it every year. They loved spending their days in the sand, in the ocean, and playing games all day with their cousins.








After their trip to the beach, they were able to come with me to Rhode Island for one of my bowling tournaments. I was excited to have them there because none of my tournaments are local to where I live and they had the opportunity to spend time with some of my friends that I don't get to see as often as I would like to. Nathan even sang the Star Spangled Banner several times to kick off each shift! It was such a special weekend...even if I didn't win! ;)

The rest of August was spent hanging out by the pool, Ben's baseball camp, they both spent one week at day camp, and we finished off with the annual balloon festival in Connecticut. In the middle of it all, Nate had to go to Boston twice on consecutive Monday mornings to complete his second neuro-psychological evaluation. This evaluation is done every 2-3 years and is part of the brain tumor clinic at Dana-Farber Cancer Institute and Boston Children's Hospital. Because he had such severe hydrocephalus at the time of his brain tumor diagnosis, the effects of the pressure can be found for up to ten years post-diagnosis. The entire test usually takes six hours to complete and because it can be so mentally draining, they spread it out over two days. I went back to Boston in early September for the feedback session with the psychologist (Stephen joined in on a conference call) to get her initial feedback on the evaluation. (more on that later when the full report comes in)

August finished out with a bang as I celebrated my 40th birthday. It's crazy to think I'm 40...it doesn't feel like I'm 40, but I can definitely feel a difference since I turned 30. Haha! And to look back, I certainly have packed a ton of life experiences in these last 10 years. I actually drove to Maryland on my birthday for a bowling tournament that is held on Labor Day weekend every year. It's the last tournament of my pro tour season so I've become used to celebrating my birthday in the bowling alley. On Saturday of that weekend, I was able to enjoy turning 40 with many of my friends, including two of my closest friends from CT that flew down to surprise me. It had to be one of the best surprises of my life. I wasn't expecting it and was most certainly surprised. I couldn't have asked for a better birthday or for better friends. The celebration continued on Labor Day with my family in CT where Nate and I always get to celebrate our birthdays together. No better way to end a long weekend!

School has started and we've already completed the first month! I can't believe tomorrow is October! We've been in full swing (or kick!) with soccer season. Benjamin is playing on a U10 travel team and Nathan is playing U8 locally. They are both loving it! They are also loving school...Ben is in 3rd grade and Nate is in 1st. They both have incredible teachers and a good group of friends. That's all I can ask for. :)

Nate also turned 7 in September! He is always so pumped about his birthday. He makes everything worth it! He chose a "Keep it Spotless" theme for his birthday and wanted to have a balloon/water gun fight with colored water. I had to get a little creative, but it all seemed to work out and all of the kids had fun!

When fall rolls around, it also means it's MRI time. Nate's annual MRI is usually in November. It was originally scheduled for November 1st, but I received a phone call last week asking if we felt if Nate was ready to try to complete his scan without sedation. Since his diagnosis, he has been sedated for 15 MRI's (I lost track of the number). Last November, they asked us and he just wasn't ready. For that MRI, he was able to complete the IV without the gas mask for the first time. When I received the phone call this time around, I really felt like he was ready. Stephen and I talked to him about it, gave him all of the pros to it (no fasting, shorter time in the hospital, video goggles, no medicine), and left the decision up to him. He decided that he was willing to try it. Once I let the hospital know, they were able to schedule him with a "Try Without" appointment on Sunday, October 21 with the follow-up appointment with the brain tumor clinic on Thursday, October 25. The HUGE downside to switching to doing MRI's without sedation is that we don't get the results on the same day. For Stephen and I, that makes it four days of anxiety waiting to see if the tumor has grown, if he's experiencing any hydrocephalus symptoms, etc. It's hard enough for us to waiting a few hours that we usually have to wait! To add to that stress, because his former oncologist has left the brain tumor clinic in Boston, our entire team is now new to us. He'll be seeing a new neuro-oncologist and a new neurologist. We're hoping to still see our same APRN, but we won't know that until the appointment. The good news is that if the "Try Without" appointment doesn't produce successful images, we still have the November 1st appointment to fall back on. I can't say enough good things about Boston Children's Hospital and Dana Farber Cancer Institute in their willingness to truly do what's best for the families that they're treating. They make a difficult journey a little easier.

Now that Nate is old enough to think about his diagnosis and ask the tough questions, it's been a little harder to navigate sometimes. He can rationalize and understand that even though he has a brain tumor, his long-term prognosis is excellent. He is one of the lucky ones. Despite this good news, it doesn't necessarily make things any easier as a parent. A few days ago, he asked me why I chose him to have a brain tumor. Hearing this broke my heart. His thought process is typical of a 7 year old; he has seen a lot and has been through more than most. Attempting to explain the "why" of having a brain tumor is almost impossible. Knowing that he will always have to deal with it, even if only once a year, really sucks. As a mom, to think that my son thinks that I chose him to have a brain tumor is a tough pill to swallow. I have to remind myself that it's his 7 year old way of processing something most adults can't even do, including me. He has shown the world so many things in his 7 short years...how to be joyful, how to be exuberant, how to be excited over everything, and I mean everything! I try to bring him with me in everything that I do...with a smile on my face and kindness in my heart.

Stephen surprised Nate with a bagpiper for his family birthday party!

Ben on the soccer field

Nate's ready to go!

Busy, busy, busy

More than 6 months have passed since the last blog post and I could come up with a million reasons why. But, the most important one is that it's because we are living life. The boys are busy as ever and certainly can't complain of ever being bored! The winter months were spent in the ice hockey rink, in the gym playing basketball, or at home in bed with strep as between us, there were 6 cases! As the weather turned, the spring months were spent either on the baseball field or the soccer field.  And now that we're in July, our time has been spent in camp, on the baseball field, or the tennis court. Like I said, busy!

The school year ended on an interesting note. Nate had just learned how to climb the monkey bars at school, and on June 12, I got the dreaded phone call from the school nurse. He jumped down from the monkey bars and had broken both his radius and the ulna in his left forearm. He handled it in typical Nate fashion....no tears, all smiles, and complete wonderment. Ben, Nate, and I arrived in the ER around 3:00 and by 9:00, Nate and I (Ben had a baseball game) were on our way home after he had to have general anesthesia to be able to set the bones back in place. The ER team was absolutely wonderful and fell in love with his little cartoon voice and great attitude. Today marks 5 weeks and he's doing great! The big cast came off last Friday and he is now wearing a removable brace. He'll have another recheck in August and hopefully will get the all clear for fall soccer. Fingers crossed. For now, he's happy just to be able to swim.

As for those cases of strep, Ben will be going to the ENT next week to see if his 5 cases of strep is enough to get those nasty tonsils out. I'm secretly hoping that she wants to wait for one more before taking them out. I know he's terrified to have surgery as he's seen his little brother go through more than his fair share of hospital visits. Unfortunately, Ben also has to see a dermatologist to get a suspicious mole on his back checked out. This appointment is in August. Please keep him in your thoughts as he's the "healthy" one. :)

Then, Nate has to go back to Boston for two straight Mondays to complete a follow-up neuropsychological evaluation in August as well. That should be fun. (insert eyeroll)

Until then...these boys will be busy finishing up tennis camp, hanging out with their friends, going to the beach, and trying to enjoy each day of this beautiful summer before first and third grade begin!

Ben catching!

Nate waiting for the doctor

the boys at the Kidz Bop concert

the boys being silly

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)