Oh, how the tides have turned

December 13, 2016 – Follow-up MRI and meeting with the Neuro-oncologist

It seems that it has been over a year since we had received any good medical news.  The typically optimistic people that we were at our core were slowly being replaced by more pessimistic, on edge, waiting for the next shoe to drop, type of people.  We only imagined the worst scenario, and then what was left of our optimistic selves would put a slight positive spin on it, trying to find some light in the dark; trying to find something to hold our breath for.  Finally, today, we were given a very bright light.

We went into Reagan’s MRI this morning with only two possible outcomes on our minds.  Either the beast hadn’t grown and we would have more stress, and more anxious waiting to come, or it had grown, and we would do surgery, remove it, and hopefully be done with it.  That’s all we could see.  We were at a point where we didn’t know which one was better to hope for.  She’s so young, if we do surgery and knock it out of the park now, we could be done, and she could move on.  If it hasn’t grown, then we don’t have to put her through surgery or other treatments at such a young age.  All we knew was that whatever it was, we would meet it head on and do everything in our power to do the best for her.

It is never easy having to put your kid under anesthesia for a test.  We held Reagan, tightly holding down her arms and holding her head steady, while the anesthesiologist put the mask on her face and turned on the air.  We listened as she screamed and felt her body struggle until she finally fell asleep.  We laid her body, heavy with artificial sleep, on the bed, kissed her many times, and left to wait.

We made our way to the café and finally had breakfast.  Since Reagan couldn’t eat at all this morning, we did not either.  Blake then managed to find every video on the internet that I would find entertaining and distracting.  Sadly, but unapologetically, I love fail videos.  Those ridiculous videos where a cat runs into a wall, or a person belly flops from a high cliff jump; the very intelligent videos that you find on the internet.  He kept the distractions coming.

Finally, the anesthesiologist came out to give us an update.  Reagan was all done, snoring, but doing great and was in recovery.  We would be able to go back and see her as soon as she started to wake up.  When we finally get back there she is groggy and can’t hold her head up.  She is a small drunk person, a very moody, small, drunk person.  Once we get the go ahead, we pick her up, collect our 3 bags worth of stuff that we somehow managed to bring, and go upstairs to meet with her Neoro-oncologist.

He asks us so many questions.  How is her swallowing?  How is her breathing?  How is her walking?  How is she developmentally?  Does she get headaches?  What medications is she on?  With all the questions, we are both imaging the worst news with all the pessimism we have built up over the past year.

We get the results.  It hasn’t grown; it hasn’t changed at all!  Based on what he has seen, he thinks that there is actually a very slim chance that it will actually change.  It is an incidental finding that was only found because of her Epilepsy.  If she didn’t have Epilepsy, and we didn’t have that MRI done, we may never have known about the beast.  It is likely she never would have shown any symptoms, so we would never have had a reason to even look.  His guess is that there are many people walking around with little bumps on their brainstems, or other parts of their brains, that never bother them or harm them.  Reagan is most likely in this category, which is the best category she could be in with the beast.

Instead of the initial wait and watch with an MRI every three months, we will have her next MRI in 6 months.  Once we get the all clear from that one, we will have her next one a year after that.  With that all clear, maybe another year or two until the next one, and so on.  Until, around puberty, once we get our final all clear, she will be done with her MRI’s.  The beast will be laid to rest in his quiet, unchanging spot on her brainstem, and we will never look at him again.

 

Reagan’s pre-MRI dinner in Mom & Dad’s bed with some of her favorites, hot dogs and apples!