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
