Dear friends & family of Nik/Melvern & Maura,
As many of you may know, a mass was discovered in Nik/Melvern’s pituitary stalk over a year ago. The doctors suspected it is a rare inflammatory disease, which they hoped to find in other parts of his body to safely biopsy, confirm, and treat.
Eighteen months of scans and tests (and repeat scans and tests) have proven it impossible to find anywhere else in his body. We know this because Nik has been poked and prodded and scanned and imaged and punctured and tested for everything under the sun.
He’s now been dubbed a medical mystery by 2 of the best Boston hospitals!
For much of the last 18 months, the mass mostly didn’t disrupt anything other than hormones, which they could replace, and his regular visual field tracking continued to look good. More recently, Nik began having “rapid confusion” which ultimately looked like increasing short-term memory loss throughout his day. This pushed the doctors to act more aggressively to confirm a diagnosis so they could determine a treatment plan.
In December (2022), Nik was admitted as an inpatient (with a lot of pushing doctors and pulling strings). This ultimately led to imaging in which we discovered the mass had grown and was impacting memory circuits in his brain. Having tried everything else, a brain biopsy was our last option. The neurosurgeon who specializes in his type of biopsy (endoscopic transsphenoidal hypophysectomy) was on vacation and he was discharged with rapid outpatient follow-up.
Nik underwent brain surgery for the biopsy on 2/2/23 and we prepared for a 2-night hospital stay, with a 6-8 week recovery following discharge. It was our hope we’d have an answer and be able to begin treatment within that timeframe.
Unfortunately, there were complications during Nik’s procedure, and they were unable to safely capture any tissue from the mass. Complicating matters, Nik has had an extremely rare response (likely due to a number of factors, including his disease) coming out of the surgery. He spent 7 days post-op in the ICU and we are approaching day 17 here at the hospital with no timeline yet for discharge.
While we wait to hold a second team meeting with the many doctors and disciplines involved in his care to plan next steps, we have ultimately been told that there is a long process ahead for Nik and Maura. This includes a likely re-attempt at biopsy, recovery, rehab, treatment, and aftercare, the intensity and duration of which are yet to be determined.
The nature of Nik’s disease and post-op state will continue to require Maura’s full attention. Anyone who knows Maura and Nik as a couple knows they are better together. The hospital staff regularly note (in his medical records!) how much better Nik does when Maura is close by! As a result, she must continue to take unpaid leave until he is stabilized and likely at least until he is able to start some course of treatment that will hopefully steer his course in another direction.
At this time, we have no way of knowing how long Maura must take unpaid leave. Nik has been on FMLA since December. Additionally, Nik’s hospital stays in December of 2022 and now in 2023 will hit them with two separate calendar years of out-of-pocket expenses, and astronomical medical bills that they could not have anticipated.
Even with all he is going through, Nik still manages to show his absolute BIG, hilarious, talented, generous, quirky, wonderful self. Many thanks to everyone who has reached out with good wishes and to ask how you can help. At this point, Nik and Maura’s area of greatest need is financial support (luckily, they have an abundance of all the other important things they need – love, well-wishes, visitors, and, in the immediate sense, help with caretaking).
Melvern’s close friends in the musical community are planning something special soon to help raise awareness and support—more to come on that in the future. In the meantime, please continue sending all of the love, well-wishes, prayers, and magic their way. And any contributions to this fundraiser are so very much appreciated—every little bit will help Maura and Nik focus on Nik getting well.
Thank you with love from the sisters and brothers who love Nik and Maura so much!
Barb, Dean, Kathleen, Maggie, Tom, Sarah, Steven, Michael & Kelsey
