First of all, thank you. Thank you to all of my/our friends, family, co-workers, supervisors, therapists (professional and as needed), and neighbors. You all continue to show up out of nowhere and swoop in when we need you the most and even when we don't realize how much we need you.
The past couple of days have been challenging to say the least. Throughout the day Wednesday Mama Marian progressively became less and less of herself and more and more confused.
After her nap in the afternoon, I helped her to put her prosthetic brace on her right foot and calf. As her ankle and foot straightened out into place, her foot began to pulsate as it had months ago when we initially met with the neurosurgeon. This was explained to be a neurological sign called Clonus, an involuntary and larger movement than the typical reflexive response of someone without a neurological condition. The Clonus continued for a few minutes and then subsided again shortly after, but Mama Marian continued to feel odd and "shaky".
By the time Dad arrived home that afternoon, Mom was having a significantly harder time with cognitive processing and completing sentences. It was terrifying and it felt like we were losing her one moment at a time. We were did not know what was going on at that point in time.
Fortunately, our many emails to Abigail Ciampa, the P.A. on Mom's team at Dana-Farber, were eventually followed up by a phone call from Dr. Drappatz, the neuro-oncologist, at 9:30. He told me that he was very concerned and wanted her to come first thing in the morning for an MRI, or that night to the ER if things continued to worsen. Dr. Drappatz suspected that the tumor was possibly growing or causing swelling or even causing a bleed inside her head.
So, we scheduled a morning MRI and follow up appointment for as early as possible the next morning in Boston.
We arrived at Dana-Farber and met with Dr. Drappatz and Abby a few hours after Mom's MRI at 8am. Dr. Drappatz gave Mama Marian some basic neurological tests and was able to observe some of the concerns we had been reporting. Mom could not remember certain words, had difficulty accessing some terms, and was just generally slower in responding.
However, Dr. Drappatz explained that the tumor has actually continued to show shrinkage on the MRI. There was very little swelling in comparison to past scans and the doc was very pleased with Mom's response to the Avastin overall. He suspected that she has been having increased seizure activity from the tumor and possibly resulting from the initial craniotemy in November. The seizures are most likely reverberating all over her brain and affecting the temporal lobe region, thus causing her to have cognitive and speech deficits in between and during the episodes.
We were relieved and thrilled to have an answer that did not involve growth or swelling of the tumor. Dr. Drappatz had Mama Marian admitted to the adjoining hospital, Brigham and Women's, where she is currently. They glued 28 electrodes to her head and monitored her through an EEG overnight to determine the seizure activity and carefully adjust her anti-seizure medication, Keppra.
Mama Marian and I just met with the Epilepsy doctor (Dr. Dinkin) on the unit and his crew of residents in tow. She quickly looked up at them and collectively referred to them as "House", as Mom's been watching the show religiously since cable TV entered the house after Christmas. As Dad continues to remind her, it's a little ironic that she became obsessed with a hospital show of all things, but now we're all a little attached as well.
Anyway, the docs explained that Mom is having seizures on and off. He also induced the Clonus in her right foot and reported that it was sustained for a time yesterday evening. They are going to add Lamictal to the Keppra regimen and continue to monitor how she responds. The docs also explained that the seizures are likely from the tumor itself. Although it is stable and even a bit smaller at this point in time, it continues to wreak havoc all over her brain. In addition, the scarring from her brain surgery in November may be "tickling" parts of her brain and inducing irregular activity.
Mom is making more sense today and we are able to laugh a bit about some of the things that have hapened over the last couple of days. The deficits from the seizures will hopefully be short-lived and begin to lessen as the seizure activity is controlled.
We may get to take her home sometime today. Currently, we are waiting on the doctors to consult, start the Lamictal, and then let us know how they would like to proceed. I will be sure to keep you posted as I am able.
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