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: firstname.lastname@example.org. 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.
I am gonna fight (fight fight) to win” – yourfavoritemartian (Ray William Johnson – YouTube)
I am currently waiting in the airport to depart to North Carolina to meet with a researcher to see if there are any clinical trials I may be able to get into. Being in a wheelchair makes it much easier to pass through airport security. No line waiting! I was recently admitted to CHOP due to worsening symptoms and had a brain MRI and the tumor has in fact started to grow. This morning I received a spine MRI to check for further tumors but we are waiting for the doctor to call us to discuss results.
The good news about being in the hospital is I got the chance to finish season 3 of Longmire on Netflix. I cried at the end because (SPOILER) one of the main characters was set free of a life sentence and on his drive home he hung his head out the window with a grand smile and I just want to have a worry-free smile again.
I have determined that my spiritual animal is a phoenix because I rose strong during my initial recovery and feel like I am withering now but feel that it is only right that in time I shall rise again. It is very encouraging to hear my doctor tell me she is impressed by my physical and mental strength and endurance during this ordeal and she admires my determination. Many people have reached out to me saying that I have inspired and motivated them and shared their war stories with me and then say it is nothing like what I am facing but I don’t believe that you should belittle the struggles you have overcome. It is impressive to hear other people’s stories and just because we face different obstacles doesn’t make you less accomplished in battling and defeating the issue that plagued you physically or emotionally. I am just hoping for the best and ready to get into a trial but am still praying that one day my cancer will just fall out of me. I am ready to move forward to the next step. I am donning the eye patch again, which feels like a setback to me, but it makes me more comfortable walking around with my new brace and cane.
I wish my trip to North Carolina was more of a vacation like my sister is enjoying now but I would say this reason is equally important.
I’m hoping I can catch most of the USA game before the flight, it is going to be a great game!
Standing still is hard” – Regina Spektor (Orange is the New Black)
As you may know I have fallen on hard times in the last couple weeks. The doctor is worried, as an increase in my steroids has not improved my symptoms so I am currently admitted and waiting for an MRI. They did a CT but nothing too emergent but it is just hard to wait for the MRI especially with the results it may hold. The doctor is nervous about possible growth which we figured could come at any time but my recent progress has made it hard to believe things could change so quickly. They flooded my IV with steroids and that gave some relief to my vision problems but I am so exhausted.
The last two or three days yielded almost no sleep and plenty of crying, which is understandable as I am terrified and the wait is making it worse.
We are planning to travel to Duke University this week to meet with a doctor for clinical trials, as that may be the next step. Hopefully the issues I’m having are just one of those fluke cancer setbacks and that I will be back to PT and OT soon. The doctor is nervous about me going back to Quinnipiac in the fall but depending on how I am feeling she is okay with online classes again. In the grand scheme of things I am not too worried about delaying school and have been considering a transfer to focus more in social work but don’t get me wrong I love Quinnipiac and my friends but once all is said and done somewhere else will get me where I want.
I know people tell me they enjoy reading about my journey and experience and that I have been able to inspire but I wanted to reach back and make everyone aware that I enjoy going back and reading everyone’s comments on Facebook and the blog and responding to messages and emails because everyone’s support is also helping me to keep trucking, especially the times I do feel down although I try to focus on being happy. Happier people tend to be healthier and healthier people tend to be happier, that’s my belief. The “crazy” happy people may be onto something and I may join them.
“I don’t want to be anything other than what I’ve been trying to be lately,
All I have to do is think of me and I have a peace of mind” – Gavin DeGraw
My current goal is to try to get back to where I was. I was back at the hospital Thursday because I was having trouble with coming off the steroids and I have increased back to 6mg of steroids a day and am going to have to work the muscle memory of my left hand and foot again. It has set me back again to having trouble buttoning my shirt, tying my shoes, and typing but thankfully I only have a week left of class to work through. I am hoping though that since I have overcome this before and already have some muscle built back up that it won’t take as long to recover. It just stinks because two weeks ago I felt the best I had in a while and now I have fallen back.
Yesterday I played my first round of golf at Water Gap Country Club, 18 holes too! I am still feeling the exhaustion in my feet, calves, and back. I didn’t too badly considering the circumstances and the struggle of holding the club with the unresponsive left hand. Now that I have a membership there I hope to be back because I feel that once I regain some strength I can offer some good competition. It was the 7th Annual Golf Benefit for “Cure for Kids” and was sponsored by Warren County Forest #14 Tall Cedars of Lebanon. It was nice to see some friends and relatives there supporting me and meeting a bunch of new people that I hope to see next year when I go to support the cause and get my game on. I was blown away by how much money was raised and the people who donated their raffle and competition winnings back to me. I also enjoyed seeing all the signs at the tee boxes.
Next on the agenda is Relay for Life this weekend in Rhode Island on my team Nathan’s Neuroninjas! Hopefully it’ll be easier for me to walk around since I plan on being active in my third Relay; it’s my first time as a captain though. This upcoming weekend also marks the end of the U15 girls’ travel soccer season and hopefully we can close out strongly. Once my class and soccer end I hope to try to get back to the gym and modify my workouts to get to how I felt mid-May.
I really had a great time at the golf outing and encourage anyone to participate next year! Even if you don’t consider yourself that great of a golfer there is yummy food, fun events, good music, and just a fun summer activity with friends to support a cause.
“I feel good when I wake up in the morning” – Jay Electronica
The results are in and boy they are a relief! The doctor was happy with the results, which always makes me happy. The tumor has continued to shrink and although we don’t have measurements like the last MRI the oncologist pointed out that the amount of fluid that is seen in the tumor and affected surrounding areas is decreasing too, which is a good sign. The tumor somewhat looks like it is condensing on itself. We also met with a geneticist to discuss a blood test to test me for certain genes that may tell us the cause of the tumor.
The Gourmet-to-Go event at the Chelsea was a delicious success and it sold out! It was nice seeing, meeting, and greeting every one there. It was heart-warming to see the support and the chefs did a great job on the food!
As the weather is getting even better and the plants are coming back to life, I am starting to enjoy going out more and just seeing spring finally set in. This past week I was in Philly four times, three for doctor check-ups with the ophthalmologist, neuro-oncologist, and radiologist and have a date set in early May for my next MRI. I drove to and from the ophthalmologist to help practice for when I drive Mackenzie, Hannah, and I to CHOP for a Battle of the Bands event, set up by Child Life. Not only did we enjoy the music and food but we also got up to dance and sing along with the local bands.
This past weekend was a soccer-filled one, in other words it was great! Unfortunately our girls’ team was defeated but they did play hard until the end. Following the game, we headed to Red Bull Arena to watch them play the reigning champs, L.A. Galaxy. Luckily they were able to maintain their undefeated record with a 1-1 tie. Thanks to our affiliation with TOPSoccer we were able to meet two Red Bulls players and get autographs and on the way out we ran into Juan Pablo Ángel, who has played for the Colombian national team and was on Aston Villa.
I have dropped to .5mg a day for steroids and hopefully I will safely come off them within the next week. I just want them out of my system as I continue to progress with my physical activity and get stronger. Today I tested my balance on my bike for the first time and was fine riding it. The one thing I noticed is that with muscle atrophy and weight gain my knees have become much weaker than I am used to and it was difficult to ride up the hills of my street but I was still able to do it. It was a good pain though and I hope that I can add biking into my routine to help strengthen my knees. I believe this would also be good to fight against my blood clots and hopefully get rid of them. My neuro-oncologist said if I still have them then they are probably small because I did not show any pain when she was rubbing my leg, which would have been typical. I have also noticed that I cannot strike a soccer ball like I used to which, although frustrating, gives me something else to work on. Watching these girls play multiple times a week really makes me wish I could be back out there even if it was just practicing with them or even being able to give examples of drills.
A measure that a lot of doctors, therapists, and social workers used is Activities of Daily Life (ADL) and I would have to say that looking back on it, my ability to complete ADL have increased a lot. My recent success with driving, biking, and cooking have helped me feel like I am very close to being back to what I would consider “normal.” I have continued to learn and experiment with cooking, most recently slow cooking for Ancho Chili Pork Tostadas.
Next on the list are Triple Cheese Chicken Enchiladas. I’m hoping with this experience and once I learn how to grill I will be able to utilize my kitchen next semester in my dorm. I have also moved onto the second Hunger Games book and am sucked into Firefly on Netflix and am loving it no matter how goofy it may be. I am very excited for this weekend because not only will I be cheering on the Cotter Cousins for a Cure at the Cox Providence Rhode Races Marathon but I will also be at Quinnipiac again and am attending the Jason Derulo concert and the following day I will be at Gillette Stadium for the Red Bulls against the New England Revolution! Now that I have finished my final scholarship application, I am just patiently waiting for my summer class to begin. Given that the last couple days have been beautiful and that it is only supposed to get better from here I hope every one is taking advantage of this wonderful weather! It is perfect soccer weather so I hope there are pick-up games going on!