More than a Tumor: August-October 2013


Ben is the best big brother!

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 October of 2013. We have a long way to go to get to present day, but it's important to us 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!

August threw us some curveballs, but we continued to navigate and push through. Early on in the month, Nate had to go to the doctor for an infected ingrown toenail. He is the kid that gets all the weird stuff! These random trips to the doctor, in between all the trips to Boston, really affected his separation anxiety and have pushed him into another level of overall anxiety around anything doctor-related. He starts screaming as soon as he sees the parking garage. It's just sad. There's no comforting him, no soothing him, no bringing him down a level. He screams from the moment we walk in the building until the moment we leave; even if we're just dropping off paperwork. Sometimes I think someone will call the police or DCF for fear I am kidnapping him. This poor kid!

His sleep has not improved at all which in turn affects his entire day following the poor sleep. He reacts to every thing and everyone; not in a nice way either. We struggle to bring him in public, but continue to do so hoping the exposure will help and decrease the episodes of fear and screaming. Because of this daily struggle, we decide to have him evaluated by the Pediatric Development Center, our local birth-3 program. I tried to prepare them for what they may see, but when it comes to Nate, one can never be truly prepared.

As I write this, I am looking back at the notes from the initial evaluation. It makes me sad to read, but so happy to see how far he's come! Here are some quotes from their clinical observation:

"When Nathan saw the three unfamiliar evaluators, he began to cry loudly..."
"It took some time to lure him over to engage...he would participate for short periods before running off and crying again..." "difficult to assess"
"he began crying when his mother moved from the couch to the floor"
"sight of small bag of stringing beads sent him running and screaming into the kitchen" "His reaction to strangers is intense and his difficulty in self regulating his emotions and behavior is concerning." "During the evaluation, Nathan did not attain any equilibrium until almost two hours had passed." "Given the medical trauma that Nathan has endured, his fearfulness around strangers is understandable. What is concerning is the intensity and duration of this behavior."

He qualified for services, thankfully! We would begin one hour of play therapy once a week toward the end of September. And, it was suggested that we think about starting him in daycare one morning a week to help ease the separation anxiety. Thankfully, we were able to find a wonderful home daycare that was willing to start us only one morning.

September of 2013 started off with a bang! I was in Baltimore for a pro tour event in which I won my 16th star. For those of you that are unfamiliar with duckpin bowling, please check out www.wndatour.com! It was a very emotional win for me as it was the first one I won since my Dad passed away.

Shortly after returning from Baltimore, we celebrated Nathan's 2nd birthday. What a milestone! It was so special to be able to celebrate with our family and friends, as it was his first birthday after his diagnosis. For those of you in the brain tumor world, I know you can relate!

Happy birthday cupcakes!

Ben helping open presents

It's not always pretty!

sweet hugs from the birthday boy!

Mom's hair is always a lifesaver

We continued through September, struggling with Nathan's continual screeching and lack of consistent sleep. There seemed to be no reason for the screeching; his vocabulary was still small and there was no other way for him to communicate other than to screech. This was something that we would be working on in therapy. The lack of sleep was a whole other story. His wake up times were anywhere from 1 am (no joke!) to 4:30ish. Sometimes he made it past 5 (and even past 6 on some mornings...I can count those on 2 hands, maybe even 1!). Despite some really tough days throughout the month, we were able to end it on a good note which was nice as we were looking at another follow-up in Boston.

Nate's next follow-up was early in October. His sedated MRI went well and we are so thankful that he does well with anesthesia. He always wakes up ready to go and ready to play. We were able to connect with 5 different doctors at this appointment and got some advice about his sleep issues. Our next set of appointments were set for January. Until then, we watch and live!

When we got home, we were ready to "reset" his sleep cycle. Sounds like fun, right? Ha ha! He made some improvements early on, but it evened out and remained the same for about 2 weeks and then went backwards toward the end of the month. Ugh! He was continuing to wake up multiple times in the night and then getting up for the day before 5 (most days it was before 4). We also had his 2 year well check with his pediatrician which was absolute torture.

We finished off the month doing all things fall related...playing in the leaves, apple and pumpkin picking, and decorating for Halloween. The boys were still hesitant about dressing up, but finally did. We did not go trick or treating though. Maybe next year!