December 2015

December is always a busy month for most people....holiday parties, Christmas shopping, spending time with family, etc. I decided to kick off the month by participating in Giving Tuesday. Giving Tuesday is a global day dedicated to giving back and to celebrate generosity. With the help of Facebook and Twitter, friends and family helped Team Nate the Great (www.teamnatethegreat.org) raise $665 to help fund research for pediatric brain tumors. What a wonderful way to begin the month!

Nate watching the movie

Ben at basketball

Before the craziness of the month began, we decided to go to the movies with some friends. Nate was going to see his first full length movie in the theater....The Good Dinosaur. He had seen some shorter films at Lego Discovery and LegoLand, but this was the first attempt at a longer movie. He did surprisingly well and I could only hope that the people around us didn't mind his commentary along the way. For those of you that know him personally, he's never short on words! Benjamin was also in the middle of hockey and basketball season and enjoying every minute of it.

Ben at hockey

Nate's not too sure about basketball

The second week of December kicked off a round of appointments. Nathan had a nutrition appointment in Waltham on the 8th to review his growth and current eating habits. She gave some good insight on what nutrition he's taking in and what's he lacking. The variety of what Nate eats is quite small and he has much difficulty trying new foods. As of December, he was eating a total of about 9 foods (blueberries, strawberries, grapes, eggs: hard boiled & scrambled, PB sandwiches, waffles, Ritz crackers, cereal, and chocolate ice cream). The long term goal is always to encourage him to try new foods, but at this point, if he keeps it on his plate, that's success! Baby steps. After the nutrition appointment, he had a follow-up appointment with the ENT. The expectation of the appointment was to hopefully be discharged from seeing her. Ahh...if things were only that easy! She looked in his ears and saw that one tube was still hanging on in his right ear (she had removed the one in the left ear back in June). Before she removed it, I mentioned to her that he had begun snoring again and that on the MRI report from November, the radiologist had noted that his adenoids were enlarged. (he had his adenoids removed in March 2014!!) She pulled up the pictures from his brain scan and low and behold, the adenoids were back and back with a vengeance. She said because of the amount of snoring and continued lack of sleep, she wanted to take them out. Again. This kid just can't catch a break. So, I took the first available appointment....December 31. Happy New Year to us! :)

The next day, Nate seemed to slow down a little bit and didn't seem himself. He began to vomit on Wednesday night and had a fever. A little piece of me always stresses out when he vomits because it's a sign that something is going on in his head. If there are no other symptoms, I can usually keep the anxiety at bay, but it's difficult to not go to dark places when your kid with head issues throws up. He seemed to perk up a little as Thursday went on and just had basic cold symptoms. He had just finished dinner and sat down on the living room floor with me to play. All of sudden, he looked at me and coughed once. I noticed something on his lip and swiped it with my hand. I looked at it in my hand and stood right up. It was a blood clot and it was the size of a grape. I had never seen anything like it in my life. I washed my hands and called the pediatrician's office; I ended up having to leave a message with the answering service. In the meantime, I tried calling both of my sisters as both of their husbands are in the medical field. The nurse's line called back within 2 minutes, before I could get anyone else on the line. She listened to what happened and decided it would be best for us to go to the ER. Part of me was concerned, but another part of me was calm because it was so strange that I didn't even know what to think of it! On my way there, I was able to talk to my brother in law and he seemed to think it wasn't anything major so that helped calm my nerves too. I arrived at the ER and was brought back within 15 minutes. Stephen arrived after bringing Ben to his parents. Not much happened at the ER; they did a basic exam and didn't see the need to do any further testing which I was happy about. The ER doctor consulted with our pediatrician's office and they both felt like it was a one time thing, as strange as it was. I did mention that he threw up the day before and thought he may have strep (he has thrown up every time he has had strep), but the doctor didn't seem to think it was necessary to do the test so he just let us go with the instructions to follow up with his pediatrician in the morning.

I called first thing Friday morning and he wanted to see him just to take a look. They did a strep test and it was positive (2nd time in a few weeks). Oh, mother's intuition! Ha! I was just glad to get him on medication. In the meantime, Benjamin started with the fever symptoms and I knew the strep had spread. Ugh! He ended up at the doctor's office on Saturday morning and ended up having strep too.  What a week! The following pictures sum of Nate's December.....

Ben & Nate at the doctor's office...good moods despite being sick.

I really just wanted the boys to be healthy in time to celebrate Benjamin's 6th birthday (the 22nd) and Christmas. We were supposed to celebrate Ben's birthday with Stephen's family on the 19th, but it ended up having to be postponed by a day because the stomach bug hit the boys. They needed a break! Luckily, Benjamin was still able to enjoy his big day and both of the boys enjoyed every minute of Christmas.

Happy birthday to Ben!

silly boys on Christmas morning

Once Christmas was over, it was time to prepare for Nate's surgery on the 31st. We drove to Boston that morning.

not happy to be back in Boston

He did very well during the surgery; the adenoids were huge, blocking 60-70% of his nasal passageway. They were just as big as when he had them out the first time. Crazy! He also had the start of another infection so she started him on another round of antibiotics. He had a little bit of a rough time in recovery as he woke up quickly, but then struggled to stay awake and become alert, which is always nerve wracking. We were finally given the thumbs up to leave and looked forward to leaving Boston behind for a while.

Happy to be home enjoying some ice cream!

November 2015

For those of you that are new to our blog, we are currently catching everyone up to speed and this post will get you to November 2015 (I'm almost there!). It's important to me that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

Even today, as I write this, it's always humbling to know that Nate's story has touched so many people. It's incredible to know that he reminds people to appreciate the little things in life and that no matter how difficult our lives get, there's always someone out that struggling just the same, if not worse.

November was scan month. It had been six months since his last scan so we were as anxious as ever, knowing a lot was riding on this one. If you are in the brain tumor world, you know that having two "stable" scans at 6 months apart, there's a good chance you can move to yearly scans. This is a HUGE milestone in our world.

Before it was time for the scan (November 11), my Mom came up to visit with the boys. They always love to see her. She was able to attend music class with Nate which is always a special treat. Plus, I was able to get a day alone with Benjamin while Nate was in school. I cherish those hours alone with each son as they don't come around very often. We were able to have breakfast out and spend some time at Dick's Sporting Goods playing around. It's the simple stuff! 

Nate reading with Grandma

We headed up to Boston the night before scan day, as Nate still needs to be sedated for his MRI's. The earlier in the day the scan happens, the better, since he's not allowed to eat or drink beforehand. So, that means no one eats or drinks either, even Benjamin if he's with us. Before we left the hotel for the hospital, I was locked out of my phone. As silly as it sounds, this made me extremely anxious for the entire day. I rely on my phone during hospital visits to communicate with my family and close friends for support. Since many people look for Nate updates on Facebook during these visits, I try to update as much as I can as I know how much love and support he has. Not being able to get that support I needed during the day was a tough pill to swallow. It made a hard day even more difficult for me.

The MRI went well and recovery was okay. He slept a little longer than usual and was a little more out of it afterward, but sometimes that happens after sedation. He bounced back when we went for lunch in between appointments. When we got back to Dana Farber, the boys had a good time coloring and playing games while waiting for his follow up appointment at the brain tumor clinic. The Jimmy Fund did an incredible job renovating their waiting area; there is no chance for anyone to get bored, that's for sure!

We were able to see several specialists all at once and it was amazing to hear that we got the green light to go to yearly scans. We never thought this day would come. To be able to go from 3 months, to 4 months, to 6 months, to yearly scans in such a short time (just under 3 years) is the best feeling! We also got more information about his bloodwork and the fact that he hadn't been gaining weight; they didn't seem overly concerned about it so that means I'm not overly concerned about it. :)

We were able to relax and breathe on the way home which is always a nice feeling. Time to kick off the rest of November and the holidays to come.

It was a busy rest of the month too! Benjamin had failed the eye screening at school so he needed to go to the doctor for a full exam. Come to find out, the kid can't see out of his left eye! How I was unable to figure this out is just crazy. Well, I know why....his right eye was doing all of the work and compensating for his left eye. He came away with three diagnoses (Hyperopia, Astigmatism, Amblyopia) and new glasses. If the glasses to help correct his vision and make that eye stronger, he'll need to start patching his good eye after the follow up. Thankfully, he was excited to get the glasses! 

Nate's not the only one who plays with hair!

Handsome man in those glasses

Nathan also got strep during the month of November. It never ends for that kid! He handled the antibiotics well and got through it. Benjamin began hockey and never looked back. He could barely skate in October so he was looking forward to improving and getting better with each practice. He is was persistent little man.

Ben at hockey practice

Nate's not too amused with hockey practice

Toward the end of the month, we spent Thanksgiving in Connecticut with my family and kicked off another round of fundraising for the foundation we've teamed up with for low grade gliomas, "A Kid's Brain Tumor Cure Foundation." Please check out Nate's website if you haven't already! (Team Nate the Great)  

loving that Wrobel cake!

silly boys on Thanksgiving

"Try to be a rainbow in someone's cloud" (Maya Angelou)