My last blog on June 1, I wrote about a genetic disease that runs in my family called Cerebral Cavernous Malformations (CCM), which are abnormal clusters of blood vessels in the brain and spinal cord. These malformations can cause symptoms like seizures, headaches and strokes because they bleed. They are often misdiagnosed as brain tumors.
Now, here we are on August 17 and I feel like my whole family's lives have been turned upside down because my brother, Phillip went in for a CT Scan of his brain in May and was diagnosed with a brain tumor. Just days later he was out for a walk in his neighborhood with his daughter, Camille and grandson, Jackson and had a seizure. He fell and hit his head on the cement and ended up in ICU.
Knowing our family history, I suggested to his immediate family that the doctors be asked about the possibility of him having a brain bleed due to Cerebral Cavernous Malformations. The response I received was that he had the seizure due to a brain bleed. My response was "Yes, this is what I am trying to tell you. He probably doesn't have a brain tumor, he is having a brain bleed due to due to Cerebral Cavernous Malformations. I didn't receive a response so I decided there was no reason to even discuss it further because Phillip had already signed Advance Directives, the collection of documents that legally outline your end-of-life medical preferences. So it didn't really matter if the brain bleed was due to a tumor or CCM. The proper diagnosis for a CCM is typically made through a MRI with contrast dye and he can't have a MRI because he has a pacemaker. He was then put into Hospice Care and he was being given heavy drugs. I don't know if they were pain killers due to the fall or end of life drugs. Meanwhile, I had taken a trip to St Louis for a couple of weeks but I immediately called my friends at "Swan Songs" to have some of his musician friends go to his house and do a "Swan Songs Serenade" for him. Meanwhile my nephew, Derek, my niece, Cayce and her husband, Mario went and sang one song to him. He reuested "Come Together." His wife, Deborah wasn't happy about the visitors and even more perturbed by having music in her house.
Fortunately, as I understand, after a few days he got a new Hospice nurse who took him off of all the drugs that totally knocked him out and he is now only taking his head ache meds and seizure medication. He is is in respite care for 5 days and seems to be back to himself. I FaceTimed with him yesterday and he was playing his steel drum for me. He was so excited that he would be having a "Swan Songs Serenade" concert and he was hoping to play drums with them.
I have gotten emails from people all over the country, including doctors from El Paso and Dallas who have read my blog about the research I have done on Cerebral Cavernous Malformations. The doctors in El Paso and Dallas asked if I would be interested in the clinical trials in the research for a cure. I declined because of my age and my frail health. Distant cousins who have read the blog and I have become friends online, emailing and calling each other because we formed a connection over a disease that is rarely detected. Yet, sadly, I have done all of this research to help my immediate family and the information falls on deaf ears.
