Hi everyone, I know it’s been an extremely long time since we’ve updated the blog, and I apologize! Here is what has been going on with us since I last updated: So far, Nathan’s treatment in Chattanooga is going...
Hi everyone,
I know it’s been an extremely long time since we’ve updated the blog, and I apologize! Here is what has been going on with us since I last updated:
So far, Nathan’s treatment in Chattanooga is going alright… For those of you who do not remember what his new treatment is since his last craniotomy in June… Nathan goes every three weeks to Erlanger to get an infusion of Avastin. He also takes a form of chemo called CCNU, or Lomustine, every 6 weeks.
Avastin will help with the swelling in Nathan's brain. It has helped him get off of his high dose of steroids which was very appealing to Nathan, as he absolutely HATES steroids. As with all steroids, Nathan had gained some weight and he was NOT happy about it. Why? Well, honestly he could care less about how he looked. He was mad about the weight gain because it was wreaking havoc on his running ability. :) So, he has weaned all the way off of steroids over the course of a month. Avastin can also slow tumor growth but unfortunately doesn't affect the overall survival rate for people with GBM. Avastin is given by an IV. Since it's a FDA approved drug for GBM, he can get the infusion anywhere because it's not a clinical trial. So he gets his treatment in Chattanooga every three weeks.
The second drug, CCNU, is a form of chemotherapy -- something that was not very appealing to Nathan. CCNU is an oral pill that Nathan takes (1 pill) every 6 weeks. This form of chemotherapy is much more toxic than they type of chemo (Temodar) that he took in 2015/2016. Also, the drug accumulates each six week cycle -- meaning that with each "cycle," it will get worse for Nathan. The chemo definitely took a toll on Nathan. He gets extremely tired (sleeps all day) and feels as if he has the flu. He absolutely dreads when he has to take it. **Update - Nathan decided to stop taking the CCNU in October. He absolutely HATED the way it made him feel, and never felt confident that it was working...(Chemo has a hard time crossing the blood-brain barrier, so it usually doesn't do much for brain cancer patients).
After surgery in June, Nathan took a break from his Ketogenic Diet. Honestly, it was a miracle for him to keep anything down after surgery, because he was so nauseous from all of the pain he was enduring. So, if he wanted a Wendy’s frosty, by golly, his dad went out and got him large one. Now, he’s started to slowly get more serious about it.
OCTOBER:
We went to UAB for Nathan's first MRI since his surgery in June. We were ecstatic that the scan showed no regrowth! Praise the Lord!
So, a little over a year ago, a guy named Greg Corradino approached Nathan, asking if he would mind if he did a documentary on Nathan’s story. Nathan said, “sure,” and it all started from there. For about six weeks, Greg filmed countless hours of interviews with our families, friends, co workers, and Nathan enjoying his favorite hobby: running. Greg was editing this project on the side with the help of his friend, Aaron Murray, for a year. They sent us the final result in September - and let me tell you - it’s amazing. I was so impressed with Greg and his production skills. The way he pieced together Nathan’s story from so many peoples’ point of view is simply….moving. The first time I watched it, I was blown away. The 7th time I watched it, I was blown away. So, when our mutual friends, Jeremy Boudinet and Stephen Vlahos, saw it, they suggested we have a public showing…and literally — they took it from there. They arranged everything - media interviews, Facebook events for the showing, Facebook ads, you name it. Because of them, we had an amazing turnout at the premiere. It was so overwhelming - yet humbling - that so many people came out to watch a video about Nathan’s story. I’m serious — thank you to everyone who came out to support our family.
All of the proceeds from the premiere are helping with our medical bills. Although we do have insurance, the medical bills keep rolling in day by day, and the funds from the premiere have helped tremendously. I also wanted to mention Greg (the film maker) here. Greg made this film and asked for nothing in return. Nothing. He was intrigued by Nathan’s story and simply did this as a side project in hopes of helping Nathan out. That generosity is something you don’t see that often. Greg is an amazing film maker, but even more he is an amazing person. Thank you, Greg, for all that you’ve done for us. If you want to watch Greg's documentary about Nathan's journey, you can watch it here.
NOVEMBER:
November was a busy month for our family. Nathan started out the month going on a 10 day vacation to Costa Rica with his mom and sister. They had an amazing time! They spent the majority of their time relaxing at an amazing boutique resort with an incredible view. If you want to read more about their trip, please visit his sister’s (Hannah) blog, Touch of Gray. She documented everything about their trip and her pictures are simply amazing! Here are a few from their trip:
We celebrated Jack’s 4th birthday the weekend after Thanksgiving. Of course, it was a Superhero Party… Jack is currently obsessed with all things superhero. He knows every single super hero, their given names (as in -Batman is Bruce Wayne, etc..) and whether they’re apart of the Avengers or the Justice League. Honestly, I never thought that I would know so much about superheroes…guess that goes along with being a boy mom! He had an amazing birthday! Thank you to all who came to celebrate! Here are a few pictures from his special day:
The week after Jack’s birthday, we went on a trip to New York City with Nathan’s dad, stepmom, sister, brother in law, step brother, and step sister in law. Buddy and Debbie gifted everyone this amazing trip. Nathan and I were the only ones who had never been to New York, so we were in awe of the city! My favorite part was seeing The Rockettes and Wicked. Nathan loved being able to run through Central Park. As sad as it was to see, Ground Zero really made an impact on the both of us. Another wonderful part of the trip was being able to visit with some friends, who we’ve gotten to know (although in an unfortunate way) through a Glioblastoma Facebook group. They are our age, and the husband was diagnosed with GBM in 2014. It was truly a God-given moment being able to actually meet them and strengthen the bond that we all have through this awful disease. Being able to see New York City at Christmas was an absolute dream. Here are some pictures from that trip:
DECEMBER:
This month has been an absolute whirlwind! I can’t believe that Christmas is just around the corner… We all went to visit Santa yesterday, and lo and behold, he asked him for a...Batman. I'm almost positive Jack has every Batman ever created... oh boys!
Nathan has felt a little “off” lately, and we’re not quite sure what the culprit is. He’s had a few minor episodes, right sided weakness, pretty bad aphasia, fatigue, and some confusion. We’ve moved up the MRI (that was originally scheduled for January 22nd) to this Monday, the 18th. We’ll drive down to Birmingham tomorrow and receive the results on Monday.
I apologize for not updating the blog sooner! I hope you all know that we appreciate all of your support in every way. It means the world to us to know that we have so many people behind us as Nathan continues to fight.
I will be sure to update you all when we get the results in a few days. In the meantime, please say a prayer that whatever is causing his issues can be easily fixed. Thank you!
Much love and many thanks,
Elizabeth
