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