Saturday, December 16, 2017

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

Thursday, July 13, 2017

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

Wednesday, June 7, 2017

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

Thursday, March 30, 2017

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. 

Saturday, March 18, 2017

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









Wednesday, January 25, 2017

Update On Nate

Hey everyone,

I know it’s been a while since we’ve updated the blog. From Christmas with the stomach bug to finding out that we have to replace our field lines in our backyard, we've had a stressful and busy two months...to say the least. I’ll back up and update you all...

I think Nathan updated the blog about our trip out to San Fransisco in early December. We went out there for Nathan to run in a 50 mile (!!!) trail race through Muir Woods. Around mile 19, Nathan had two partial seizures and had to drop out of the race. When we came back to UAB for his usual infusion that he has every two weeks, his doctors wanted him to have an MRI to see what was causing these partial seizures. The results of the MRI showed major fluid buildup in his tumor cavity which was creating pressure on his brain, causing these partial seizures, headaches, and weakness on the right side of his body. They told us that he needed to have this drained in order to feel better. They also told him that the surgeon would insert an Ommaya Reservoir, so they could drain the fluid in the future without Nathan having to go through another brain surgery. So, we scheduled the procedure after the holidays on January 6th. Everything went well, and-- in true Nathan fashion-- he walked out of the hospital the next day. 


Nathan and me in his holding room before surgery
Lucky #13 (his favorite number, since that's his birthdate)

While Nathan was in the operating room, the surgeon went ahead and took a biopsy of some tumor tissue, in hopes of seeing t-cells in the tissue to show that this clinical trial is really working. We have been waiting on the pathology report, and I'll explain that in a little bit. 

So, since then, the weakness on the right side of his body has subsided. However, he has had these strange new episodes over the last few weeks. 

The first one happened on Jan. 12th...

Nathan, Jack, and I were all at home, and Nathan went to the kitchen to get some yogurt. He became confused on the "process" of getting the yogurt (where are the spoons, how do I open the yogurt, is it in the fridge or is it in the cabinet?, etc...). This frightened him, so he gave up on the yogurt and went back to our bedroom to rest. He called out to me and said that he was really confused. Before he could explain what he was confused about, he said that he was losing feeling in his right arm and I noticed the right side of his face was drooping. Then, he quickly lost his ability to speak. Meanwhile, I was freaking out. I googled (I know, I know...) these symptoms and thought that he was having a TIA, or mini stroke. Thankfully, this episode only lasted a few minutes and he was back to "normal"... speaking, using the right side of his body, etc... I called our clinical trial director, Traci, and she advised us to call the on-call Neurologist at UAB. I spoke with him, and he said that the likelihood of a stroke was very slim and that he probably had a seizure. He told me that if this happens again, go to the ER. In my head, I was thinking, "Umm..this did not look like one of his normal seizures. I'm pretty sure he had a mini stroke, according to Web MD." You know, because I know more than a Neurosurgeon... 

Anyway....two days later, he had another one...starting off with confusion, then weakness, then losing his ability to speak. Nathan handed his phone to me, and I called an ambulance. The hardest part of all of this, for me, is trying to shield Jack from seeing his dad in a weakened or scary state. This time, luckily, it didn't seem to phase him-- as he was very excited to see an ambulance and a firetruck in front of our house -- saying, "Wow-wee!", when they pulled up. Since my parents were out of town for my sister's gender reveal party, my Uncle Jamie came straight over to pick up Jack. It's so nice to have a lot of family so close! That definitely took the weight off my shoulders of trying to deal with a wild three year old in the ER waiting room.  By the time I was able to see Nathan in the ER, he was completely back to normal. In fact, he said he started to feel normal again in the ambulance on his ride to the hospital. The ER doctor ordered a CT scan for Nathan, and he confirmed that these episodes are NOT mini strokes but are complex partial seizures. Thank goodness! He said that they can look very similar to a mini stroke and that he had treated patients for a stroke, when they actually had a complex partial seizure instead. That made me feel a little bit better about my Web MD diagnosis for Nathan and that I was not a complete idiot... hah. I had no clue that there are so many types of seizures. Not all of them are the twitching/tongue-chewing ones that you commonly think of. 

Since then, he's had one more complex partial seizure. I think by knowing exactly what was happening (that he wasn't having a mini stroke) took some fear out of it for Nathan. He now knows that the scary symptoms will only last for a few minutes. He seems to recover/bounce back much faster than he does with the grand mal seizures. 

So, today, we are back at UAB for his regular infusion. We have gotten the pathology results back from his biopsy (to see if t-cells were in the tissue) and results back from testing the fluid that was in his tumor cavity. 

Thankfully, the fluid in his tumor cavity was benign. They were 99.9% sure it would be benign, so we weren't too stressed about these results. However, it is nice to have the confirmation that his fluid wasn't malignant. 

As for the pathology report from the biopsy, we obviously know that he has grade IV GBM. However, the sample that the surgeon took out wasn't large enough to show if there were T-cells in the tissue. If the surgeon had taken out a bigger "chunk" of tissue, it would have definitely affected his speech-- so it was better to play it safe. All of Nathan's doctors feel confident that the trial is working, since (one) he hasn't had any regrowth since he started this trial, (two) since a portion of his tumor regrowth looks a tad bit smaller since he started the trial, and (three) because he has been on this trial longer than any other patient at UAB with GBM. So, long story short, he's doing very well - aside from these episodes he's been having. 

He has (of course) started to run again- working his way back up. Since he left the hospital, it's been a constant challenge for me to try to MAKE him rest so he can recover from a BRAIN surgery - but he will have none of it. He has also been slowly easing back into work.

Throughout these past two months, we've seen God show up through so many people in so many ways. From everyone reaching out to help us with Jack, meals, running partners for Nathan, to the texts, calls and emails of encouragement to us. We greatly appreciate everything. Speaking of, I'll leave you all with a excerpt from a devotion that one of my close friends sent me the day of Nathan's surgery....


"I am able to do far beyond all that you ask or imagine. Come to Me with positive expectations, knowing that there is no limit to what I can accomplish...Do not be discouraged by the fact that many of your prayers are yet unanswered.

Time is a trainer, teaching you to wait upon Me, to trust Me in the dark. The more extreme your circumstances, the more likely you are to see My Power and Glory at work in your situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. 

Keep your eyes and your mind wide open to all that I am doing in your life."


Thank you SO much.

Love,
Elizabeth

Wednesday, December 28, 2016

Surgery to drain fluid and have a biopsy

For those of you following Nathan's journey, here is a post that I made on Facebook about 2 weeks ago.

It just slipped my mind to post this to the blog! I'm so sorry! 


Here is the latest from Nathan's scans this week.... (week of 12-13-16)
So, everything looked good with regard to the tumor. There isn't any regrowth and it looks the same - Praise the Lord!
However - there is an issue with fluid in his tumor cavity... Let me back up and explain:
After his surgery at Vanderbilt, the baseball-sized cavity in his brain filled with fluid over time. When you have some sort of surgery to remove something out of your body, your body will naturally "fill" that space (or cavity) with fluid. So, that is completely normal.
Now that Nathan is on this trial, the T cells that are being "jacked up" from his infusion are hopefully going to the brain and killing the cancer cells. When these T cells kill the cancer cells, they kind of turn into sludge-y fluid (for lack of a better term!) when they eventually die off. This sludge doesn't have anywhere to go, because it's in his brain (due to the blood/brain barrier). For example, if he were to have cancer in his liver and the T cells went to kill the cancer cells there, they would, again, turn into sludge but go into his bloodstream and die off and break down. This can't happen in the brain. They're stuck there, therefore, creating more fluid in his brain over time.
As the fluid gradually grows in size over time, it's acting like a tumor - creating pressure on his brain - which is causing the partial seizures, fatigue, terrible headaches, and weakness on the right side of his body.
SO - what he's going to have to do is get the fluid drained. They said when he does this, he'll feel a lot better - sort of like when the tumor was removed. We don't know about the specifics of the procedure yet. What we DO know is that they want to take a biopsy from the tumor tissue (while they're draining this fluid) to see if the T cells are really doing their job and that they're in the tumor *hopefully* breaking it down. They said the procedure is not too invasive. He'll likely spend one or possibly two nights in the hospital.
The doctors also said that this is not an emergency. We can wait until after the holidays to go through with it.
Just to be clear, this is what the Doctors are thinking - so it's theoretical. They do truly believe that the T cells are breaking down the cancer cells but won't know for sure until they get the pathology report back from the biopsy of the tumor tissue. Nathan is not exactly "excited" about the inevitable surgery but knows that he must do this to feel better. I am so proud of him for his continued positive attitude and strength through all of this.

Nathan's procedure is scheduled for Friday, January 6th. 

We will go down to UAB on the 5th to have a meeting with his surgeon, Dr. Riley. After this meeting, we'll have more details about what to expect with recovery time, what the procedure will look like, etc...  

Thank you all for your prayers. I will update you all when we have more information in the next week.

Much love and many thanks,
Elizabeth