New Year Update

Hey everyone!

2018 has started out well for our family. I haven't updated the blog since December (and we were skeptical about the outcome of his MRI, but luckily everything looked good).

I'm glad to report that everyone is doing well, at the moment. Yay! Nathan is still off all treatment, and he is feeling the best that he has since his diagnosis in 2015. He's been running a lot lately - something he has missed so much since last spring. His 2nd craniotomy (June 2017) really knocked him off his feet - literally - and he is just now getting his running rhythm back. He has also been able to go into work a few times a week and is taking an online coding class.

Our newest family member, Boogie, has also made some progress in the last 6 months. He is a Newfoundland and is the definition of a "gentle giant." Although he still hasn't gotten the memo on what NOT to chew... we're working on that. He and our 5 year old golden retriever, Yeti, have become fast friends and have so much fun tearing up our backyard. He is absolutely obsessed with Jack and would love to follow him around all day long, if Jack would let him. Jack is still warming up to Boogie-- I guess it takes a while when your 9 month old puppy continues to chew up all of your toys!

It was zero degrees outside, so Boogie made himself right at home on our bed....hmph

action shot! 

Since Nathan has been doing so well lately, I thought it'd be a good time to go back to work. I landed a job at a local non-profit. I'm working three days a week (while Jack is in school). Although I've only been there for two weeks, I am loving it so far! We are so grateful that they worked with me on a schedule that fits our family's needs.

My amazing parents, Meepsie and B (as Jack calls them), have been taking Jack to and from school and caring for him until I get off work. We are so fortunate to have them around. They have done SO much for us, and - whether they know it or not - they continue to lift so much weight off of my shoulders just by having the piece of mind that Jack is always in the best of care while I'm at work.

Jack at "Camp Meepsie" (as I call it)

B, Jack, and Meepsie

Since I'm only working part-time, I thought it might be exciting to start selling Young Living's oils. We've been on the "oil train" for a few years now, but I'm just now coming around to the idea of selling them to help out with bills.

Now, I know what you think -- believe me, I've rolled my eyes one too many times on the thought of oils and all that everyone says that they do... I am the number one skeptic of these kinds of businesses. It's literally taken me two years to come around to sell them. Also, I'm a yellow personality. What does that exactly mean? Take this quiz and find out what color you are. It's actually kind of fun and insanely accurate! Basically, it means -- I am NOT a salesperson. I did not get that gene. Right after college, I was in sales, and I always felt as if I was bothering the potential client -- and I hated that feeling -- so I didn't last long in that field.

So, instead of trying to "sell" you essential oils, I simply want to tell you about the benefits we've experienced over the past few years that we've used them.

If you're interested in learning more, great! If not, that's fine, too! Whatever floats your boat..

Nathan and I started using essential oils after he was diagnosed. His sister, Hannah, and mom, Gretchen, were really on our backs about how beneficial they can be. So, to appease them, we bought a 'starter kit.' A starter kit comes with 11 oils and a diffuser. We started out diffusing lavender at night, and, lo and behold, we started to sleep so much better. I was still a little skeptical - but I really liked the smell so I was on board just for that reason.

After his diagnosis of Grade IV GBM, Nathan started to have a ton of different issues...from insomnia, nausea, seizures, joint pain, inflammation, weakened immune system... to so many other issues, we finally started to listen to his sister and mom and actually research how oils could possibly help to alleviate these issues (along with his meds proscribed by his medical team). Gretchen and Hannah explained to us that so many oils - just in the starter kit - could be so helpful for Nathan (and Jack and me) - but especially Nathan - in all kinds of ways.

So, we started to use them. I mean really use them. We used lavender for sleeping, peppermint for nausea and headaches, frankincense for inflammation, thieves for a weakened immune system, pan away for joint pain and sore muscles, and bought clary sage for seizures (plus so many more). We have had amazing results, in my opinion. We use them all day, every day. 

So, not only are the oils incredibly beneficial to your body, but, like I said, they smell amazing, too. A random fact I learned the other day: did you know that if you burn a candle for an hour in your house can be equivalent to smoking a full cigarette? After hearing that, I am only diffusing oils to get rid of the Yeti, Boogie and Jack smells in our house. No more candles in our house!

I could go on all day about all of the oil routines we do... taking supplements, rollers for Jack to help him simmer down at night, chemical-free bath products, chemical-free makeup products, but I don't want to overwhelm you. So, there's just a small taste of my family's positive experience with essential oils. Like I said before, if you're interested, I'd be more than happy to talk to you more about them. If you want to go ahead and dive into the essential oil world, you can click here to get started. Either way, thank you for reading my "sales pitch" :)

Ok, so changing topics. Yesterday was a special day because a special band, Moon Taxi, came out with an amazing album with a special song about a special person. The whole album is amazing, but The Way was written about and inspired by Nathan, his journey and his fight. One of Nathan's best friends is in the band, and we are forever grateful to him for writing this song and giving this amazing gift to us. This song will always hold a special place in our hearts. 

THE WAY

Racing to the end, won't give up without a fight

I don't know how you do it, a never ending light

I can't see it from your view, couldn't imagine if I tried

Staring down the dark, with your eyes open wide

And in this moment, oh I can see you

Show me the way, the way, the way

We can run run run right to the edge

I'm right beside you every day

Looking back I see how the days all added up

I'd give anything for more, but it'd never be enough

I know it must feel like you're running out of time

But the end is not the end, when you leave so much behind

And in this moment, oh I can see you

Show me the way, the way, the way

We can run run run right to the edge

I'm right beside you every day

Every day...

Thank you for keeping up with our family. Your thoughts and prayers are appreciated. Please keep us in mind when we go back down to UAB for a MRI next month.

Much love and many thanks,

Elizabeth

Update

Hey everyone,

So we went down to UAB on Sunday for Nathan to get his MRI to see what was causing his issues...we are happy to report that there was neither regrowth nor fluid in his tumor cavity! Praise the Lord!

Swelling was the root of the problem... although Nathan still feels terrible and is still having all of the issues that I mentioned in the previous post, this is the best case scenario for him to have his problems from.

Dr. Nabors said that the swelling is more than likely from being off steroids for almost a month and not having an Avastin treatment since last month. Luckily, he is NOT going to put Nathan back on steroids. He is taking him off all treatment for 2 months, so Nathan's body can heal and he can hopefully regain some strength. Dr. Nabors believes that the swelling will go down naturally in time.

So, our plan is for Nathan to enjoy the holidays without having to think about treatment. We will go back to UAB in February for an MRI to see how everything looks. If he starts to get worse in the coming weeks, Dr. Nabors told us just to let them know and they'll get Nathan an MRI asap so they can see if he needs to get back on his Avastin treatment.

He also switched around some of Nathan's seizure meds in hopes of fixing his fatigue issues.

Thank you all for your thoughts and prayers. They were definitely answered! Please pray that Nathan's swelling will start to subside sooner rather than later. Although we are ecstatic with this wonderful news, Nathan still is not feeling his best.

Thanks again for keeping up with us. We are so grateful for you!

Much love and many thanks,
Elizabeth

A long and overdue update!

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

Our Next Step

Hello!

I'm so sorry that I haven't updated the blog in so long...things have been a bit hectic around here. I'll try to catch everyone up to speed.

Exactly a month ago, on June 14th, Nathan had his 2nd craniotomy at Vanderbilt to remove the fluid that had formed in his tumor cavity. The doctors also wanted to biopsy the potential regrowth that showed on his most recent MRI. The fluid was caused by a cyst (that they believed was caused by the tumor/regrowth), and it was creating so much pressure on his brain that it very quickly could've turned into a life threatening issue, if not dealt with soon.

Dr. Reid Thompson performed the surgery, and, yet again, he did an extraordinary job. As we were going over what the surgery would look like, Dr. Thompson explained to us that because this was Nathan's 2nd craniotomy and third brain surgery (his 2nd brain surgery was placing the Ommaya Reservoir in his tumor cavity back in January 2017), there were a lot more risks associated with this surgery. As he was listing off all of the potential scary outcomes that could happen during or after surgery, I sort of dazed out after hearing, "...trouble speaking, increased chance of a stroke, right side paralysis, death..." So, it's safe to say that we were all extremely nervous on the day of his surgery.

After almost 4 hours of waiting, Dr. Thompson walked out into the waiting room with a huge smile on his face and holding two thumbs up. Whew! I can't begin to express the relief that I experienced when I heard that Nathan was out of surgery and doing well. When we were able to see him, he was talking and moving all of his limbs really well. Here's a side tangent to explain just how well he was doing...

So, earlier that morning at the hospital, I was talking to Hannah, Nathan's sister, and she was filling out a form for Nathan that needed his cell phone number. She asked me what his number was and I proceeded to tell her the wrong number. In fact, I had to look up his phone number in my phone...Flash forward to immediately after his surgery: Nathan told his nurse to call my phone so I could come in and see him. The nurse asked if he knew my phone number (thinking someone would just have to walk out into the waiting room and grab me), and to the nurse's surprise, Nathan rattled off my phone number as if it were no big deal....that he didn't JUST have his head cut open. As you can see: one, that's how well Nathan was doing after his THIRD brain surgery, and two, that's how amazing and skilled Dr. Thompson is.

All of us with Dr. Thompson and his amazing intern, Jade, after Nathan's surgery

Nathan resting after surgery

A sweet moment that Nathan's mom caught between the best Neuro Surgeon and (we like to think) his favorite patient! :) 

Ok, back to the update... We stayed in Nashville for a few days as Nathan was recovering. After that, we went to Knoxville so Nathan's family could help me care for Nathan and Jack. Everyone was so amazing to pitch in and help with Nathan and Jack, or take Jack for the day to give me some free time. We are so fortunate to have such an amazing family and support system.

We stayed in Knoxville for about a week, and by the point we felt comfortable to come back home. When we got back home, Nathan started to feel very sick. He had just tapered down on his steroids. He started to vomit, had constant excruciating headaches, and was always tired. Initially, we blamed it on tapering down on his steroids, the weather (it had been raining for days upon days and Nathan tends to get headaches when the weather is bad), and possibly food poisoning or the stomach bug. By day four, we contacted our doctors at Vanderbilt. They were worried that Hydrocephalus could be the root of his problems --which can be extremely dangerous. They told us to go straight to the closest ER and get a CT scan to hopefully rule out hydrocephalus. After rushing down to my sister in law's and brother's house to drop Jack off and waiting a few hours in the ER for the test results, the scan showed that it (thankfully) wasn't hydrocephalus. This was a huge relief because IF the scan showed that he did have fluid on his brain and that his ventricles couldn't drain properly, he'd have to have a shunt placed -- causing him to have a FOURTH brain surgery not even a month out from his third brain surgery. Instead, it showed increased edema (swelling). Nathan's doctors increased his steroids to help to resolve the increased swelling, and that has seemed to resolve the problem. Praise God!

During all of this chaos, we get the pathology report back from Nathan's craniotomy while some of our friends were over bringing us dinner. Unfortunately, it wasn't the news we were hoping for. The results showed the questionable regrowth that they were wondering about on his most recent MRI was, in fact, tumor regrowth. I'd compare the regrowth to the size of a Ritz cracker -- but not the whole cracker. The tumor is shaped like a crescent. Because I'm such a visual learner, this is how I imagine it to look like...yes, I ate the cracker and put a Keurig coffee pod beside it for size comparison....

My take on Nathan's tumor size 

Nathan actually laughed that I went this far to show the size

As Dr. Thompson was delivering the bad news to us, luckily, our sweet friends were there to preoccupy Jack while we digested the news. Dr. Thompson told us that our next step should be to reach out to Dr. Burt Nabors (our Neuro Oncologist) at UAB and discuss our options.

So-- that's where we are today. We went down to UAB yesterday and met with Dr. Nabors about what our next steps could be.

The first thing he mentioned was Strata Oncology, which is next generation sequencing or tumor sequencing. Basically, they take tissue from the tumor and run tests on it. The information gained from this is the DNA or makeup of the tumor cells and their mutation status. We are hoping that the results show a mutation that already has a FDA approved drug to target the specific mutations of the tumor cells.

The second thing that Dr. Nabors mentioned was putting Nathan on two drugs (at the same time) called Avastin (Becacizumab) and Lomustine, also known as CCNU.

Avastin will help with the swelling in Nathan's brain. It can help him to get off of his high dose of steroids which is very appealing to Nathan, as he absolutely HATES steroids. 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 will get his treatments in Chattanooga every two weeks.

The second drug, CCNU, is a form of chemotherapy -- something that is not very appealing to Nathan. CCNU is an oral pill that Nathan will take (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.

As with all drugs, there are some scary side effects. With Avastin, the side effects are higher blood pressure and a heightened risk of bleeding -- which can be extremely serious anywhere in your body-- but especially your brain. Luckily, Dr. Nabors said that they only see brain bleeding occur in metastatic brain tumors, as in cancer that started somewhere else in the body and metastasized (or spread) into the brain. Nathan's brain tumor is a Primary Brain Tumor so they usually don't metastasize to other parts of the body. CCNU has all of the usual side effects of chemotherapy- nausea, low blood counts (which puts him at a higher risk for infection), and hair loss.

UAB will monitor Nathan on these two drugs for two months to see if they're working. As Nathan starts this new therapy for the next two months, we will still be searching and sifting through clinical trials to make sure we have an idea of what our next next step could be.

Thank you so much for keeping us with us and reading through my novel of an update. As always, we greatly appreciate all of your prayers, texts, calls, emails, visits and everything in between. Like I said earlier, we are incredibly fortunate to have such an amazing support system through friends, family, and even people we've never met. We love you all and can't thank you enough for all that you've done for us.

Much love and many thanks,
Elizabeth

2nd Craniotomy

Hey everyone,

Here is the most recent update on Nathan...

Over the past few weeks (pretty much since the Boston Marathon), Nathan's quality of life has greatly decreased. He has been suffering from aphasia, weakness on the right side of his body, confusion, and seizures. He has had to stop running because his right side of his body is too weak. We got a Peloton Bike, and he while he has thoroughly enjoyed it, he had a partial seizure on it the other day. The main cause of all of his issues is fluid. The fluid is in a cyst that's filling up and has no where to drain. Nathan had an Ommaya Reservoir inserted in his brain back in January of 2017 to periodically drain the fluid....thinking it would be every 6months or so... Well, he has had to have his cyst drained EVERY. TWO. WEEKS. when we go down to UAB for his infusion. He feels better a day or two after he has it drained...but this fluid is building up faster than they can drain it. So what is causing all of this fluid buildup? Well, we have speculated everything between running to the drug he's on for the clinical trial. 

Last week, Nathan and his dad went down to UAB for his MRI. It showed that the cyst had grown larger, and it was creating a midline shift in his brain. Nathan has had a midline shift in his brain since January, but it has worsened over time. UAB suggested that he have another craniotomy to remove as much of the cyst as they could in hopes that his cavity would start draining properly after that. We had everything scheduled, but we believe it's always best to have a second opinion-- so, Buddy (Nathan's dad) reached out to our Neuro Surgeon at Vanderbilt, Dr. Thompson. Long story short, he replied within 30 minutes of Buddy's email and squeezed us in today for a consultation.

After looking at Nathan's MRIs for the past year and seeing the progression of the fluid buildup, Dr. Thompson believes that the small-to-medium amount of tumor regrowth is causing all of this fluid. Nathan's regrowth is 4cm long. It's more like a crescent shape. So, here is an AMATEUR sketch up of what's sort of going on in Nathan's head...

So, like UAB, Dr. Thompson wants to go in and remove and "break down" the cyst and take out as much of the tumor as possible, in hopes to slow down the production of this fluid. It's risky because the tumor regrowth is sitting RIGHT on his language area of his brain. It's also risky because second craniotomies are a lot harder on the patient because they're farther down the road in their illness, radiation has caused scarring that can be tricky to work around, and it's just more taxing on their body. There are definitely a lot of risks involved with this surgery, but we don't have many more options -- which sort of makes this an easy decision. 

We have chosen to have Dr. Thompson at Vanderbilt perform the surgery. He operated on Nathan almost two years ago (to the day), and we have continued to have a special relationship with him. He is the one who pointed us to UAB for the clinical trial that Nathan is on, and it was such a great decision for us. We absolutely love and trust all of our doctors and medical team at UAB but just felt that Dr. Thompson was the right choice for our family for this particular surgery. 

A lot of people have asked about placing a shunt in... here's the reason why both UAB and Vanderbilt don't want to put a shunt in...as of right now, a shunt isn't necessary. A shunt is used when the ventricles in your brain aren't draining correctly. Nathan doesn't have that issue right now. They wouldn't put a shunt in his tumor cavity to drain the cyst fluid because it would drain into his abdomen...my question to Dr. Thompson was, "So...what's the problem with that? Why can't that work?" He said, "To put it simply, because all of the fluid possibly has tumor cells in it, and you don't want that draining into your abdomen..." Ohhhh...that makes sense now! So, if the cyst was pressing on his ventricles and not allowing them to drain correctly, then they'd insert a shunt there. Hopefully, that won't be an issue.

Nathan is scheduled to have his surgery a week from today: Wednesday, June 14th at 10:30AM, which happens to be a day that Dr. Thompson does not perform surgery so it means so much that he is coming in on an "off"day.

We will be at Vanderbilt on Tuesday for blood work, pre op testing, and a MRI. 

I will update you all when I have more information. Thank you all for the prayers, calls, and texts! Please pray that Nathan will have an uneventful week with no seizures or episodes.

Love,

Elizabeth

Midline Shift Update

Hello! I wrote this email to family and friends about a week ago -- but wanted to keep everyone updated on what's going on with Nathan...

We came down to UAB yesterday (3/22) for his regular infusion. On the way down, Nathan was complaining about tremors in his hands and face. He couldn't smile or close his eyes without his face trembling, but he felt normal-- other than that. When we got to UAB yesterday, Nathan told Dr. Saleh (clinical trial doctor) about these symptoms. He was a little concerned, so he suggested we have an MRI done today to see if there was fluid buildup causing these tremors and partial seizures (he had two episodes while we were in France). Nathan had the MRI at 8am this morning.

So, the results showed MAJOR fluid buildup in his tumor cavity. There was so much that it was causing a midline shift. A midline shift is the shift of the brain past its center line. The fluid was pressing into his right hemisphere of his brain, causing all of these issues from the pressure. Here's a picture of his most recent MRI (taken today -March 23rd). You can see his tumor cavity (filled with fluid) and how it's creating that midline shift. I posted a picture of what a normal brain's midline is supposed to look like vs. Nathan's brain:

        

So, you can see how big his tumor cavity is and how much the fluid is pushing the cavity over to the other side of his brain. To fix this problem, they drained his Ommaya reservoir. They stuck a needled into the mushroom shaped reservoir in his brain, and sucked 20 cc of fluid out. Nathan didn't seem phased at all. I, on the other hand, almost passed out. Seeing that is not for the faint-hearted....

Here's a picture of what 20 CCs of fluid looks like...I put a pen next to the tube for reference. Sorry if this is TMI!

​

For another point of reference, they removed 60cc (3X of what's in the picture) of fluid from his cavity during his surgery in January. They only removed 20cc this time, because they were worried about taking too much out at one time and having him suffer from side effects from his brain returning to its normal state, as it decompresses. They weren't worried as much during his surgery when they removed so much because he was under anesthesia, surrounded by a team of doctors, and would be in recovery for a few days. So, they suggested that we come back each week (for two more weeks) and they'll removed 20cc next week and 20cc the following week to completely drain it little by little. 

​
​As for the results of the MRI...mostly fluid (obviously). The radiologist said that a nodular area on his regrowth looked worse, but our Neuro Surgeon (Dr. Riley) and our Neuro Oncologist (Dr. Nabors) didn't necessarily agree with the radiologist. They believe that all of this fluid is creating pressure on that nodular area and causing it to look worse than it is. So, Dr. Nabors wants to drain all of this fluid and have another MRI to get a better baseline, and we'll do that in about 3 weeks and see what's really gong on in that area. Dr. Nabors also wants to hold off on his infusions until they get a better idea of what's going on, too. Dr. Riley was a little concerned about Nathan's running (thinking that the blood in the fluid was coming from hemorrhages from running)...but neither doctor believes that it's bad enough to take running away from Nathan. They gave him a green light for the Boston marathon!

So, that's where we are at the moment... I hope all of this makes sense! 

Thanks for keeping up!

Love you all,
Elizabeth

Update as of 3/30:

-We went to UAB yesterday for the day so Dr. Saleh could drain 20cc of fluid from his reservoir. Everything went well! We were in Birmingham for less than 2 hours - so it was just a quick trip. We'll go back next Wednesday so they can drain the last bit of fluid, and hopefully Nathan will feel much better once his brain decompresses back to a "normal" state. He will have the MRI the week after he gets the last 20cc of fluid drained. 

The Chattanooga Marathon and Paris

Hey everyone!

It's Nathan. A lot has happened since we last wrote. All good stuff, though! First of all, let's discuss the Chattanooga Marathon debut...

The Chattanooga Marathon

We were feeling great after mile 20. I was feeling a little rough, but I was going at a pace where I could qualify for Boston—by we, I mean Alan Outlaw (owner of Fast Break Athletics) and I, who I can't say enough good things about. A guy that can run a 2:40:00 marathon knowing when to push and when not to is a great man in my book. Alan also helped coach me through the process, which was difficult given my stubborn attitude towards more workouts and less slow, easy runs. "You have to build that fitness base, and you build that by running slow" (another term for this is called MAF method) is what he would say to me when I insisted on doing another workout. Slowly though, he chipped away at me until I was teaching others about the MAF method.

Anyway, back to the marathon... I was feeling a little rough through 20 miles when I felt it coming: I was about to have a partial seizure. David Cobb wrote about it at the tail end of this article after the marathon, but luckily, Alan knew just what to do. I told him I wouldn't tell anyone this, but he handed  me one of the meds I take when I have a seizure. I couldn't talk for a while, and my head was twitching to the right for about a minute -- but we ran through it, though we couldn't regain the sub-7 minute pace we were accustomed to. We finished in 3:07:09. Had we not had the seizure episode, it would have been a Boston Qualifying Time (which is 3:05:00 for my age group). At the time, I was really upset. If I just hadn't had that seizure!

I expressed my frustrations with my dad and long story short he got me a spot...in this year's, which is in a month!!! So, I am preparing myself to enjoy the prestigious Boston Marathon! If I had qualified, I wouldn't have been able to go until next April. God always comes through the back door (as my mom would say) and boy did He ever.

God also blessed me with a more incredible gift. As I was frustrated walking back to the car, this little boy came up to me and told me I was his hero and that he wrote a paper about me in school. This almost brought me to tears. Why was I so involved in this trying to run a 2:5X:00, when I was already a hero to this kid? Are my priorities that mixed up... AGAIN? This brought me back to reality where I realized that winning isn't everything. You have people that you don't even know watching the way you live your life, so live it like "Christ is formed in you."

The kid who brought me back to reality!

Here are some more pics from the marathon!

Alan and me before the start

Jack and Liz at the finish line!

I thought this was a cool pic.

#greymatters

Paris

The day after the marathon, we dropped Jack off for 11 days with Elizabeth's sweet parents (Meepsie and B, as he calls them), and we set off for Birmingham for another infusion. I honestly don't know what we'd do without her parents. They have been such a gigantic help to us. They take care of Jack every two weeks while we're at UAB and give us a peace of mind knowing that Jack is in the best of care. THANK YOU, Beth and Buddy, from the bottom of my heart for all that you do for Jack.

  From Birmingham, we set off for Paris!! Let me take a step back and tell you that Katie (Elizabeth's sister) dreamt big when her company, Beautycounter, asked for wishes to be granted. She wrote in that her sister had taken French her whole life (even minored in it in college), and her husband had terminal brain cancer. She asked them to give us a trip to Paris. Well, Christmas of 2015, they granted it! Last year and a week before the trip, I had a grand mal seizure which ruined any chance of an all expenses paid trip. Beautycounter said they would reschedule it any time, and a year later, on our five year anniversary, we finally made it!

Us on our five year anniversary!

My sister and Cal, in a crazy coincidence, were in Paris for a few days when we were there! You can read her blog here. If you read her blog, we all had a blast!

A lot of people asked me what my favorite part of the trip and as I have had time to think about it, it was watching Liz live out her dream. She was so excited about everything! She kept saying, "I feel like I'm in a dream, and I am going to wake up and the Eiffel Tower is going to go away!"She loved the cafe's, shopping in the Marais, the Eiffel Tower, just everything! It was like I was living vicariously through her. Though I had a couple episodes, everything was AMAZING! I felt like I was always hungry. I went off my diet, because you just can't go to Paris and not eat the bread. Needless to say, I gained ten pounds!

Thank you Katie and Beautycounter for letting Elizabeth life out her dream. I was just there to tag along ;) We seriously can't thank you enough.

Here are some more pics from our trip to Paris!

Liz, Hannah, and Cal take a selfie in front of the Louvre 

Liz and I with Hannah and Cal

Liz & me at Versailles

Liz made me try Escargot...and I ordered them for every meal after this

At the Musee de L'Orangerie infront of the Monet paintings

Musee D'Orsay

Arc de Triomphe

Thank you all for the continued prayers and for getting us to Paris and back!


Much Love,

Nathan