A few comments before this next post. In part, Diana and I are using this blog in hopes of helping others who face similar situations, and to share news we know many want to hear. But we are also both scientists, in fields where collaborative research, writing and thinking are common. Publicizing the decisions we are making – and why we are making them – reflects our use of a familiar process in the most important decisions of our lives. Writing it all down helps each of us understand what the other thinks and knows, allowing us to better evaluate each decision. This dynamic applies beyond just the two of us – the posts you see here also reflect interactions with family, friends and Neva’s medical team, and they create the chance for people near and far to consider and possibly refine the decisions we make. That’s all enormously helpful to us, and most importantly to Neva, for which we are eternally grateful.
Finally, we just want to say that we love our daughter and that’s a wonderful thing but it is far from unique. Great families and parents surround us everywhere. In other words, if the tables were turned – and we hope they never are – you’d do the same. OK, on to today’s news.
Science seeks not only to explain, but often to predict. How much snow will fall tomorrow? How quickly will that bone heal? How much food can this acre of land grow?
Some things are easy to predict (how fast will that ball drop?), some things notoriously hard (how many people will like that new movie?). It’s no accident that many of the tough things involve what people might do, think, feel. We may be nothing more than ephemeral acts of chemistry, but holy sh*t can that chemistry take unexpected turns. Diana and I are scientists…but certainly don’t know the science that could have predicted “your daughter’s neurosurgery is now scheduled for next week” would one day become news worth celebrating.
And yet here we are. Only yesterday, it looked as though Neva’s surgery could not happen until mid-January. But efforts were made, schedules rearranged, and she’ll now have her tumor removed a week from tomorrow. As Bill Nemergut would say, the squeaky wheel gets the grease. Given that the tumor is free from critical surrounding structures but oh-so-close to some of them, the faster timeline may make a world of difference. Surgery day will be agonizing as we wait hours for news on the outcome, all the while picturing a still tiny little girl in a position once unthinkable. But that day needs to come soon, and now it will.
That’s not the only good news of the week. Craniopharyngiomas can wreak all kinds of havoc, and three of the biggest concerns are impaired vision, secondary adrenal insufficiency, and diabetes insipidus. The second and third of these are linked to pituitary damage, a common result of tumor growth. Adrenal insufficiency means the body is no longer able to mount an appropriate hormonal response to stress; diabetes insipidus is a condition in which hormonal regulation of water and salt balance fails. Both are tricky and potentially scary conditions, especially in young kids.
As of today, we are fairly confident that Neva doesn’t have any of these big three issues. Her vision and optic nerves are fine. She produces cortisol as she should. She regulates salt and water as she should. It’s all great news, because it means the tumor has not yet created the kinds of more serious damage often in place upon their discovery. The one caveat is that pituitary tumors often affect peripheral vision, something that is nearly impossible to test in children as young as Neva. While we haven’t seen any indication of such issues, we will need to wait until she is several years older until we know for sure.
None of this means she’s home free. As we wrote earlier, surgery frequently creates new pituitary damage, and while unlikely in Neva’s case, can also harm the optic nerves and hypothalamus. And craniopharyngiomas are notorious bastards about recurrence, so risks of new tumor damage can always arise. But today’s news is still fantastic. It means Neva will head into surgery – one with a good chance of complete tumor removal and minimal new damage – with her vision and most critical pituitary functions intact. We’ll take it.
And Neva? She continues to be heartbreakingly brave. Today’s good pituitary news arose from a tough morning: she had to get an IV that took multiple tries and endure repeated blood draws…all without eating or drinking since dinner the night before. She didn’t like it, but she pushed through as always. Then she took the news of her impending surgery in stride, before bouncing about the Denver Children’s Museum, happy as ever. Upon leaving, she detoured into the gift shop, selecting one treasure or another she might request from Santa. If all goes well next week, she should be home in plenty of time to run downstairs and check under the tree on Christmas morning.