Decisions...Decisions...

Hey everyone,

It's Elizabeth, and here is an update on our past month.

On March 29th & 30th, we went to Vanderbilt for Nathan's routine scan. It's always a nerve-racking experience, because we're always afraid of the worst: regrowth. Well, after 5 months of clean scans, tumor regrowth showed its ugly face. We were a little caught off guard, since Nathan had been doing so well. He ran a half marathon in the beginning of March and a 10 mile trail race a few weeks later.

The doctor said the regrowth was minimal at this point (maybe 2 cm in size). He recommended that we end chemo and start to look into clinical trials.
   *Side note: Some people have asked why did he stop chemo?...Couldn't it be taken as a precautionary measure until he finds a clinical trial? Actually, no. For a lot of clinical trials, you have to have chemo out of your system for at least 4 weeks. So, because of that reason, and the fact that chemo just wasn't working, Nathan ended his hated relationship with chemo.

For the past two weeks, we have been glued to our computers researching clinical trials all over the country.
   *Another side note: For those who have (fortunately) not had to search through countless clinical trials, I'll give you some insight: it is extremely overwhelming and stressful. It doesn't help that reading through these trials that are filled with constant medical jargon might be the most confusing things I've ever read. Plus, to add more stress to the situation, this is literally a life or death decision that we're making. Talk about pressure. So, Nathan's prayers have consistently been asking for God to close doors that needed to be closed. As in: we don't want to go down paths that lead us nowhere and are counterproductive. So, back to the story..

We applied to Duke's clinical trial that involves injecting the polio virus into the tumor (as seen on 60 minutes). Unfortunately, Nathan wasn't a candidate for that trial because the location of his tumor. So, that door is closed. Thank you, God, for closing that door early on and answering our prayers.

Switching gears - this past Sunday, Nathan ran in another trail race. He placed 4th overall. Even though I've been telling him he needs to slow down - literally and figuratively - he continues to impress me. However, that night, he had two grand mal seizures. He was taken to the ER via ambulance from our house where they checked his labs and monitored him. While we were in the ER, he had his second grand mal seizure. Seizures are always a frightening experience for the both of us, but he seems like he's recovering better than he has from his past seizures. However, these seizures have caused more of a sense of urgency to have a clinical trial plan underway. We cancelled our trip to Paris (we would be leaving this Sunday) and traded it for a trip to Minnesota (I'll explain later). We'll just grab some French wine and some cheese curds, and it'll be just like Paris, eh?

So, now that everyone is caught up, where are we now? Well, currently, we are in Nashville. We have an appointment with our doctors so they can help us navigate through these murky waters (aka clinical trials) and gather their wisdom on the best trials/options for Nathan.

On a hopeful note - we've been in contact with Mayo Clinic in Rochester, Minnesota. Just this week, we found out that Nathan is a potential candidate for a clinical trial that involves the measles virus (much like the polio virus from Duke). You can read more about it here.

So, long story short, we are flying out to Rochester on Monday to learn more about this trial and to complete some blood tests. If Nathan's tests come back favorable, we'll proceed with a biopsy. After a stay in the hospital + a few days to recover from the biopsy, Nathan will have his surgery. The surgery will be another craniotomy. The surgeon will resect the tumor and then inject the measles virus into the tumor cavity. I don't know the specifics yet - but we'll know more (probably than we've ever cared to know about the measles virus) on Tuesday or Wednesday of next week.

The first hurdle: blood tests. If these tests don't come back favorable, then Nathan is kicked out of the trial and we're back at square one. So, while we are praying for God to open or close certain doors, please pray that it will be clear if this is the right or wrong path for us.

If all goes well and they move forward with the surgery, we plan to stay in Minnesota for at least 3 weeks (so Nathan can recover and we'll already be up there for his follow up appointment). Please also pray for strength for the both of us. This will be the longest time that we'll go without seeing Jack (who is staying with my parents), and I know it will be extremely difficult.

Thank you for continued prayers. Thank you to our friends and family who have gone above and beyond already - surrounding us in support. We love you all and will keep you updated when the time comes!

Love,
Elizabeth

After Nathan finished the River Gorge Trail Race