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...
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
