This weekend was very tiring but fun. I went to a Red Bulls game and was able to stay up until 11 PM, which was a new record lately. We got tickets in the front row right on the corner flag. These tickets were provided to us through the Red Bulls in conjunction with the delicious Applebee’s fundraiser. I was able to go to the game with my mom, dad, Mr. Nolan, Don Nicholls, Caitlin, Maddie, and Alley. Hannah wasn’t left out she went with her soccer team! The fun didn’t end there as I also went to an Eagles preseason game thanks to Child Life. It was my first NFL game and a bucket list item! Earlier that week I also had a friend visit from school and my old PT stopped by to see how I was doing. She brought goodies (Kit-Kats).
Towards the end of the first round of chemo I started to loose my hair in clumps. I did not want to blend in with Jade and Treasure so we shaved my head as a preemptive strike.
On the way to Philly this week I tried out an audiobook app. It worked pretty good so maybe I can get back into reading since the chemo makes my eyes tired. We believe the chemo may be working because my symptoms seemed to have plateaued which is what the doctor had hoped for. She said progress will be slow but people have told me that I have been slowly improving it is just hard for me to notice it. I started the second round of the chemo this week and will be on it for three weeks total. I am going to take a week off again and then start a new chemo and then repeat the cycle.
I created a Relay team, Nathan’s Neuroninjas, a Quinnipiac team, for September 11th. There I hope to give the opening speech but I don’t know how long I will last that night. I should be off of a round of chemo by then.
I am receiving some PT visits at home to try to get my mobility back slowly but it is hard without any tumor shrinkage.
I saw Mackenzie for the last time today as she is leaving for school tomorrow. It was very emotional but I am very excited for her. I am very proud and I know she is going to have a good time.
I recently had a dream that put new optimism on my situation. I really hope the message I received has some true meaning behind it.
I hope everyone is staying cool. It is hotter than Hades outside.
This is my 30th blog! I’m surprised many of you have stuck around with my droning this long (maybe you are still here for the pictures), although I do enjoy journaling and sharing my experience and just writing in general. During one of my recent sleepless nights I had the idea to write a short story to pass the time, as inspired by my steroids and sleeping pills but we will see if I really follow through.
Time for the news… I am eligible for the Duke trial but am currently locked out on the waitlist. This approaching Monday I am meeting with my oncologist to perhaps immediately begin a cocktail of chemotherapy oral pills that will hopefully boost each other’s effectiveness to attack the tumor and combat my symptoms again. In the meantime, hopefully the trial could open for me to join. I am tired of waiting and doing nothing and watching my independence slip out of my grasp again. I may be exhausted but I won’t back down if I still have some energy to fight. I don’t want to wait too long and let the feelings of despair and hopelessness overcome the positivity I am implementing in my battle. I am also learning how to modify my diet as that has proven effective for fellow cancer patients. Reiki has also yielded me strange results lately as focus on my left arm makes me more emotional while focus on the left foot clears my mind and soothes me. I am also thoroughly enjoying my occasional massage! One day I think I deserve a whole spa treatment.
I recently received the okay to drop from 12mg to 10mg of steroids a day. This has greatly atrophied my legs again and weakened my knees and I am back to the wheelchair for now. Like a phoenix, I said, I have to wither before I grow. It is just very frustrating to have to watch my progress deteriorate before my eyes. The lack of sleep is also taking a huge toll on my overall body exhaustion.
Good news? I received another scholarship but for $500 but I’m not complaining! I’ve also had the CONCACAF Gold Cup keeping me going but am missing my first USA game tomorrow for The Art of the Brick exhibit at the Franklin Institute Science Museum. And maybe hit up some world-famous cheesesteaks! I’m not complaining! I cannot wait until I can return to cooking!
Since my physical activity has unfortunately significantly decreased I have stepped up my reading and Netflix game. I flew through John Green’s The Fault in our Stars book and couldn’t put down the Shane Kuhn authored raunchy assassin comedy The Intern’s Handbook and am excited to begin his newly released sequel after I begin Go Set a Watchman by Harper Lee. I am also nerding out on the Halo video game series books. The Magicians book series is also on the list. I am going to be busy this fall considering that mom and I may try our hand at German Rosetta Stone. On Netflix I cannot find a reason why Freaks and Geeks was cancelled after one season. My sister and I are currently sucked into Orange is the New Black, yes we are a little behind the times. I just finished the Star Wars movies for the first time and I would argue that the final movie made, Revenge of the Sith is my favorite although most would like to disagree.
As I don my soccer ball eye patch, I am to work on my Child Life Beads of Courage to one day share my complete and colorful journey with anyone interested. Also, do not be afraid to ask me about the disease if you are curious on the process. I would be curious, too.
There will be a fundraiser at Applebee’s in my benefit. I have worked them before, it is a great time!
Here is the info:
INDEPENDENCE SOCCER CLUB
APPLEBEE’S FLAPJACK FUNDRAISER
$15.00 per person
July 26th, 2015 8am-10am
225 Mountain Ave. Hackettstown, NJ 07840
Meal includes: Pancakes, sausage, scrambled eggs and a beverage (coffee, orange juice, soda or tea)
All of you know our longtime travel registrar and U-15 Comet coach, Dan Orsini. His son Nathan was diagnosed with a brain tumor several months ago, while in his sophomore year of college. His tumor type is a Diffuse Intrinsic Pontine Glioma and is located in the pons of the brain stem. Nathan has completed radiation and is actively investigating clinical trials and research opportunities, as there are not any current treatment plans specific to his condition. As he continues to rebuild muscle strength lost due to both the tumor and the biopsy surgery, it is his intent to return to Quinnipiac University in the fall for his junior year.
Nathan played for the Independence Soccer Club travel teams from U-10 to U-19, at least one season every year since 2005. He is a TOPSoccer coach (certified through NJYS), a grade 8 referee, and an F license coach. He has been the assistant coach for his younger sister’s U-15 team this spring. Nathan was a 2013 recipient of the Bob and Matt Keegan Memorial Scholarship. In high school, Nathan played defense and midfield. He played intramural soccer at Quinnipiac University. Nathan likes the Red Bulls and is currently cheering for Sydney Leroux in the World Cup.
We have 300 tickets to sell, so please help spread the word! To purchase tickets, please email: email@example.com. Breakfast ticket checks are payable to: Independence Soccer Club. For each ticket sold, Nathan will receive $11.00.
If you would like to contribute, but are unable to attend, checks may be payable to: Nathan Orsini and mailed to: Independence Soccer Club, PO Box 32, Great Meadows, NJ 07838. We also need adults 18+ to help serve, so email us today to volunteer!
We are offering prizes to our top Independence Soccer Club ticket sellers!
First Place – Red Bulls Tickets generously donated by the Red Bulls
Second Place – 1 Free Travel Registration (value $115) or 2 Free Recreation Registrations (value $100)
Third Place – Adidas Brazuca Soccer Ball
We are asking every player to try to sell at least 3 tickets, so we can reach our goal!
Please share this message with your family and friends. Thank you for your support.
Kelsey is a nearby girl about my age who was also diagnosed with a Grade 3 anaplastic astrocytoma over a year ago and she recently won a Courage Award from the Voices Against Brain Cancer. She also is trying to apply a fighting spirit so it is nice to know I am not alone although I wish no one else had to go through this.
Recently my life has been pretty good as I was almost at my 2-mile goal on the treadmill; most recently my personal best was 1.97 miles. Then I started to have trouble, which I attribute to the steroids. I was fine at .5 mg every other day but when I stopped, I experienced symptoms a few days later. My eyes are flirting with double vision occasionally especially when trying to go for walks or at the most recent soccer game. My left arm feels weak and my left fingers are slow. My left foot drags and the knee buckles a little and has stopped me from achieving my running goal. I can no longer try to jog on the treadmill in fear of tripping. My frustration is sometimes overwhelming because I thought I could be safely jogging outside again and participating in more physical activities. I just don’t want to end up in the hospital again.
I have begun attending Reiki sessions to help keep me in a positive mindset. I believe it is important to try to stay happy especially when faced with mounting frustration because it may be able to provide more motivation to overcome the setback. I just hope that I can figure out an appropriate steroid dose so I won’t be affected at a concert on June 18, Relay for Life on June 19-20, or the Cure for Kids golf outing fundraiser this Saturday. Recently, I received a check from the Belvidere Oxford St. Elementary School for the funds they raised during Stall Day and dedicated to me. It was an impressive amount compared to what my class ever raised and it is nice to have this support.
I had a great time at the Tech N9ne (yes that’s how it’s spelled) concert. He is the musician who I wanted to work for one day in his music label but have since switched interests to Child Life.
I am almost finished with my 5 week accelerated introduction to psychology course and am doing well. It is a lot of work crammed into a short amount of time and I am learning a lot that can apply to me now such as functions of the brain and how my cancer has affected me, coping strategies for stresses and traumatic events, and discussions on complementary and alternative medicines which I have been exposed to at the hospitals and by fellow patients. I am just hoping that I can return to how I felt just a mere two weeks ago so I can finally reach my treadmill goal and continue with my physical activity.