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