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.
“You were made to live a good life and that’s what I believe,
So hit the floor say a prayer start working you got to do something,
It’s alright to crawl before you walk it’s alright to walk before you run,” – Mary Mary
I began my new round of chemotherapy Monday. If there is any progress the doctor said it would be slow. I am doing this chemo for three weeks then switching to another for a couple weeks. The first will hopefully stop the cancer from growing and the second will hopefully shut down the growth pathways. I am just extremely exhausted lately and am just tired from everything. Even waking up is tiring and my body is just sore everywhere. I really hope it begins to work for me.
On the flipside, I caught up with my Beads of Courage and it looks so cool! My family spent Saturday in Philly at The Art of the Brick then we hit up Geno’s for cheesesteaks and Franklin Fountain for ice cream. It was an awesome day!
Wednesday, Mr. Nolan set up a wireless TV and we ate wings and pizza outside during the USA game! Sadly they lost their chance of making it to the finals.
One last reminder that the Hackettstown Applebee’s fundraiser is this Sunday 8-10! I hope to be there!
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.
Tomorrow marks 3 months since my diagnosis and the next day is the big day as I have my MRI check-up for a new baseline on the tumor since it’s been about 4 weeks since radiation and chemo have ended. I am nervous about the results but am expecting to see that it has shrunk given my progress with balance and mobility that I have been working hard on with PT. I like going there even on every Monday when it snows because it makes me sweat and I miss that feeling. I have so many exercises to do there that I run over my appointment time every time now but I don’t mind.
The Super Bowl was great as we had appetizers for dinner and the ending of the game was fantastic as the Patriots came out on top! I also recommend the Spongebob movie to anyone interested… Mackenzie and I were hoping to see Mortdecai but it wasn’t playing at the theater… but that was no problem for a Spongebob fan like me!
I have finally finished the Harry Potter book I was muddling through due to Netflix distracting me, but there is nothing wrong with a little binge watching! I found out that I am not eligible for a clinical trial from University of Pittsburgh due to the results of my blood test. That clinical trial would have used vaccinations to trick the body into attacking the tumor cells. The cells aren’t already targeted by the immune system because they confuse the body into believing that it is not dangerous to the body and therefore allow the tumor to grow. Since I am not eligible for that one we are going to keep looking at other clinical trials at places like Sloan Kettering. While the search for clinical trials continues, I am also going to apply for cancer-related scholarships as I have already started a couple of them. If anyone knows of any don’t be afraid to let me know!
And hello to the ladies at Belvidere Dental who said they like to read my blog when I went for my check-up, now I have clean and white teeth ahhh! I hope everyone is keeping warm during this crazy winter of weekly snowstorms.
“May your strength give us strength
May your faith give us faith
May your hope give us hope
May your love give us love” – Bruce Springsteen
As I enter the second week after radiation and chemo, I am enjoying the free time and love going to PT and doing the exercises at home. I would like OT more if I didn’t have to drive to Philly for it but I am still there for my appointment once a week and do the exercises at home.
In my free time, I will admit I have been binging on Netflix a little as mom and I watched the first full season of Sirens in one day and I have watched several movies and am half done with The Walking Dead. Even though it seems like I am sitting around a lot, which sometimes it feels like, I am trying to move around during the day to stay active and work off the extra weight from the steroids and lack of movement. I have been helping mom cook lunch and dinners by making sandwiches, wraps, scrambled eggs, and Friday I even made meatballs and pasta! That was fun and it came out great if I do say so myself. Later in the week I helped make pumpkin bread and I hope that chocolate chip cookies are next on the list.
Since I am getting stronger after treatment I decided to look back on the goals that I set for myself in December to see what I have met. I did see Hannah go to the Snowball. For the one-month goals I met them all except finishing The Walking Dead, which isn’t all that important. I have started to not even use the cane in the house and PT is hoping to get me off the cane for outside soon. I am able to open Kit-Kats and chips by myself, which is very handy for me (yum!), I can dress and shower myself and Mackenzie and I blew through American Horror Story Coven as I mentioned in a past blog post. I have yet to meet any of the other goals as they haven’t been available to me yet but I hope to crush them.
I hope that my time after treatment continues to be as good as it has been and that I continue to get stronger. We are currently looking at clinical trials I can be entered in to treat my tumor but we won’t know any answers after blood tests and they determine if I am eligible or not due to medical history. I hope everyone has a wonderful end of January and enjoys the Super Bowl as I hope to veg out and eat tons of appetizers!
“Just open your eyes and see that life is beautiful” – SixxA.M.
We got our Christmas tree Saturday and finally decorated it Friday and boy was that tiring! I was in charge of the little fake tree. On Sunday, my family saw the new Hunger Games movie and I loved it! I don’t understand why a lot of people didn’t like it. It also made me wonder how amazing it is that everyone has a story to share, whether through movie, music, or other forms of entertainment. Speaking of stories, I finished the second Harry Potter and am almost halfway through the third! The third is very enticing, if I do say so myself.
Monday, sadly, my PT evaluation got cancelled because radiation ran late but we are going to cancel again to try to do it closer to home since it is tiring driving to Philly everyday, especially with the holiday season traffic. My OT evaluation on Wednesday went very well though and the guy that will be taking over for me actually works with people with double vision so I think I will stick with him. Now that we are talking about my double vision, it seems to be getting better but I still have to sport that eye patch for now.
The rest of the week I got good news, no platelet transfusion needed and my sodium count went up, and then Thursday night they found a blood clot in my left leg. Since I am at risk for a brain bleed with the tumor, the only thing that can be done is monitor the clot and hope it doesn’t break and move to the lungs. I have to wear a compression sock and just have to keep an eye on symptoms but it just adds further complication to my situation. It is good that we know about it now as it has probably been there since I couldn’t move my left side. It is possible for it to go away but it is from my mid-calf to my knee, so it is pretty big. The veins in the leg around it will expand to make up for the blood it will not pump and it could just become part of me forever. Once radiation ends, which I am half done with now, it can possibly be treated.
I met a woman at HUP that has colon cancer and was chatting with her and she said that when I talked to her, it was the first time she smiled in a month. I have seen her a couple times since then and we are now buddies and chat. A girl also recognized me at a doctor meeting as she is reading the blog! I had no idea that so many people read this! On Friday, after staying in Homewood Suites in a handicap room, which was very nice, Kasey Keenan met us at HUP and brought Dunkin! There was also a local music high school performing carols, and they were very good!
As always, I love the dinners that everyone is making! I’m hoping to go on a date tonight with Mackenzie and tomorrow dad and me leave for Philly to stay there until Wednesday because next week is very busy. Even with the news of the blood clot, I’m going to try to stay positive as it is better that we know about it in case anything does happen. Other than that, everything is getting better and I hope everyone is doing well and has a great holiday week! It was very nice to see D’Anne, SueAnn, and Treacy again!
I can’t believe I just realized how perfect that song fits now. Well today was day 2 of treatment and I feel even stronger. I can somewhat move my left toes now. Plus, the Child Life people that I want to be gave me my own Kindle and Amazon gift card! I guess Christmas came early! I wish I could fully smile to show my excitement but I have some pictures to show you guys. I also met a kid in the waiting room as we made nutcrackers to keep us busy. I admire his courage. My blog may be slowing down as things get repetitive now and I do not want to bore everyone but I will update with anything I find interesting. I am very glad everyone seems to enjoy following my story. I am excited for Saturday to see Hannah go to her first formal dance, the Snowball! Okay, without further ado, here are some awesome photos of the state of the art facilities!