More than a Tumor: December 2016

What a year it's been! As I sit here and think about 2016 coming to close, I am amazed at what the boys have accomplished, what they have overcome, and what 2017 will bring. I always try not to get too far ahead of myself and look too far in the future. The past few years have been emotional and as nice as it is to dream about the future, I try to savor the good things in each day (this can the hardest part for me sometimes!). I can only hope that 2017 holds promise. I don't ask for much....I simply want both of my kids happy, healthy, and ready to take on the daily challenges that life can bring. Again, that last part is always the toughest.

Overall, the second half of 2016 was, to say the least, unpredictable. The summer got off on the right foot with Nathan ending his preschool career. It was a bittersweet moment as we watched him take over the stage in their graduation production of The Three Little Pigs. He, of course, stole the show as the wolf. I get choked up even now when I think back to what a wonderful job he did. The little boy who seems to be scared of his own shadow sometimes, took control of himself and said and sang his lines with his little cartoon voice. It was amazing. It's always interesting for me, knowing what he's been through and to watch him master something, to think about what other people think of him. No one truly knows what his little head has been through except him. And even he doesn't even realize it at times. I know I'm his mom, but the boy is special.

We went through the summer with very little planning; Ben had 2 weeks of day camp at his elementary school and 2 mini-vacations. The first week of camp, Ben enjoyed it....it was all about sports, of course he did! The second week brought about some challenges. He left camp that particular Tuesday feeling off. He said his legs hurt and they felt weird. This brain tumor Mom went into protective mode and probably thought things I shouldn't think. But, unfortunately, it comes with the territory I guess. Then, he spiked a high fever. Long story short, this episode lasted about 4 days, he was unable to walk properly for the entire week. Talk about scary! He even needed to use a stroller by the end of the week. You want to see this Mom freak out a bit? That's how you do it! The pediatrician didn't seem to think anything of it, we kept an eye on the fever, as well as the leg pain. By Saturday, he was starting to feel like himself again. Poor kid!

The rest of the summer was spent doing summer things....pool parties, spending time at the lake with friends, beach trips, going to the amusement park, and making trips to CT. I was able to win a few bowling tournaments along the way too. :)

Nathan had a 2 day neuro-psychological evaluation (What is it?) scheduled for the last week of August. I was expecting him to struggle with having to do such involved testing without me in the room, but he completed everything with flying colors. The testing is part of the protocol for the Pediatric Brain Tumor Clinic at Dana Farber Cancer Institute. Because of the severe hydrocephalus that he suffered and his brain tumor, it is required that he have baseline testing before kindergarten in case anything comes up while he is in school. Nate and I stayed overnight in Boston on Sunday night as the first day of testing was early Monday morning, drove home, and then drove back on Wednesday. In the meantime, he also had his 6 month neuro-opthamology appointment on Wednesday morning. He had to get his eyes dilated (never any fun for anyone) and handled it as best as he could. The doctor felt like his eyes are doing well, there continues to be no damage to the optic nerve (due to the hydrocephalus), but still wanted to see him again in 2017 because of the eyelid fluttering that he does. I was emotionally prepared for that news this time around. We headed off to the rest of the neuro-psychological testing. He, again, did well and the psychologist felt like she learned quite a bit about him and her results would be accurate. The report was due to be completed in about 3 months. Yeah, you read that right.....3 months. :)

That same week, Benjamin started first grade and Nathan began going to a different preschool in program that's run more like kindergarten. He could've started kindergarten (he missed the cutoff date by 5 days, but we decided it was in his best interest to give him another year of social/emotional growth). They both had such great first days; exactly what parents want to have for their kids.

Early in the fall, Nate turned 5 years old....gasp! Everyone says it goes by fast, but I can't say that it has. Can I believe he's 5? Yes, I can. Each day/month/year has had its definite challenges, but I couldn't be happier or more proud of the person he is becoming. He shines a light on every one he meets.

The rest of the fall consisted of Benjamin's flag football schedule, Nate's swimming, and both of the boys started Yoga for kids. Relaxing, right? Haha! Stephen and I had a feedback session in early October in Boston with the psychologist that did Nate's evaluation. Did we learn anything new? Not really, but I feel like it is really important to have everything in writing for his current teachers, as well as anyone who works with him. Based on the testing, he showed signs of anxiety (duh...for anyone that knows him). It was recommended that he start seeing a therapist on a regular basis that can help him learn coping strategies around things that he has anxiety around (for example, he has a fear of being left alone, fear of most food, sleeping issues) and also around some of the repetitive behaviors he exhibits. He had been in therapy for a short time in 2015, but with everything else that was going on, he needed a break. Now, he's been going for a few months, and he's really starting to show some growth and independence. He tried a new cookie at school, he went out on the ice with his teacher at school, and has been able to spend short times alone in a room (which is HUGE!). I'm thankful we found a therapist that has made a connection with him.

Unfortunately, the link to anxiety doesn't stop at Nate. Ben has been struggling at home with issues around being alone and sleep as well. We just simply try to get through each day with as much positive encouragement and realistic expectations as humanly possible. Our routines are known to them and we follow through with consistent rules; this seems to help. I'm glad I'm able to use that Master's degree I have with my own kids. ;)

Benjamin has made so many gains this year; playing every sport imaginable and excelling at all of them. He loves football, ice hockey, and basketball and plays them any chance he gets. He is looking forward to playing with all of his friends at his birthday party in a week. He turned 7 over a week ago, and he likes to have his party after Christmas so the presents don't stop! Haha!

The best news we got all year was at Nate's yearly MRI in November....STABLE!!! This means his tumor has remained stable and has not grown in a way that requires treatment. It also means his ETV is working to make sure the cerebral spinal fluid is doing what it's supposed to be doing. All great things! No scheduled MRI until next November. Simply unbelievable.

The first thing we have to look forward to in 2017 in dental surgery for Nate. It all came a little unexpectedly, but I hope that he's on the right path. Long story short, I had to switch the kids' dentist to an unforeseen issue and thankfully, found one that can handle Nate's anxiety. Unfortunately, because of his self-imposed restrictive diet, his teeth are baring the burden. He has to go under sedation in early February so that the dentist can really see what the scope of the issues are. And because of that, we don't really know what's going to happen or what exactly he'll have to have done. We can only hope that the issues are minimal and that recovery isn't too terrible for him. Either way, we'll get through it, just like we do everything else.

Team Nate the Great is just under the $54,000 mark for raising funds for pediatric brain tumor research! Our fight will never stop to help fund trials and other research. Just because Nate currently doesn't need treatment, doesn't mean he won't ever need treatment. At this time, it is our responsibility to help other families that are currently fighting the fight. Thank you to those that have donated in the past and will donate again in the future. Thank you to those to spread the word and encourage awareness. We cannot do this alone. A Kid's Brain Tumor Cure Foundation is one of the most incredible charities in the world; check out our page at www.teamnatethegreat.org

I hope and pray that everyone reading this has a wonderful and stress-free (I can dream, right?!) 2017. Thank you all for your continued love and support during what has been some of the hardest years of my life. See you in 2017!