Phillip's Swan Song Concert

On a subject that nobody likes to talk about... The end of life of loved ones.

The last few months have been very difficult. I am writing this in January of 2026 because I just haven't been able to gather my thoughts until now. My dear brother, Phillip passed away on September 4, 2025. He had a CT scan of his brain in May and was diagnosed with yet another brain tumor. He had been diagnosed 15 years ago with a brain tumor and the neurologist at the time gave him 2 years to live. As Phillip used to say so often, "Doctors practice" medicine." He and I had been diagnosed and misdiagnosed so many times... and here he was again, being diagnosed with yet another "brain tumor." And once again I questioned the diagnoses because I have spent more than 15 years doing ancestral research and genetic research that has led me to believe that both Phillip and I were born with rare genetic disease called Cerebral Cavernous Malformations (CCM) which cause clusters of abnormal, thin-walled blood vessels (cavernomas) in the brain or spinal cord. The vascular malformations lead to altered blood flow and can cause numerous serious issues that are prone to leaking blood, potentially causing seizures, strokes, severe headaches, or neurological deficits like weakness or vision/hearing changes, but most importantly, brain bleeds leading to death. But they are not cancerous. Sounds scary right? Yeah, it is and Phillip and I had suffered from all of the above. CCM isn't a one size fits all kind of disease. While CCMs are often present from birth, they can sometimes show up later in life, or just be asymptomatic for years. When Phillip had his CT scan in May, I knew exactly what was up but the only way to properly diagnose CCMs are with MRIs with dye and genetic testing. Phillip couldn't have a MRI because he had a pacemaker for his genetically defective heart.

For years Phillip and I spent hours talking on the phone about our similar genetic brain and heart issues and symptoms. It was comforting to have someone to talk to about our similar issues. Yet there were also several major differences. I had my first seizure at the age of 15 and he didn't have his until he was about 62 but we used to talk about all of our symptoms we had from a young age that we assumed everyone experienced. And our approach to dealing with our health issues were very different. As I said, I had my first seizure at 15 but I didn't have another until I was pregnant at the age of 25. After I gave birth to my son, I started taking seizure medication. Religiously! Phillip, on the other hand, had a tendency to be a bit of a dare devil. He would take his seizure meds for a while and then he would decide he didn't approve of the western medicine his doctors were prescribing and he would abruptly stop taking his meds. As expected, he would end up having a severe seizure, fall and injure himself. It was an ongoing issue for 15 years. Our heart conditions were rare and different but we were both also diagnosed with aneurysms on our aorta. My cardiologist prescribed 5 meds and told me about 12 years ago to expect that my aneurysm would grow 1 cm annually and I would probably have to have open heart surgery to repair it by the time I reached my mid 60's. My doctors have been surprised over the years to see that it has grown very little. I am now 70. Phillip on the other hand, had to have his whole aorta replaced because his aneurysm got dangerously large. Again, because he wasn't taking his meds.

So over the years, I have grown accustomed to taking 6 meds daily RELIGIOUSLY and I spend lots of time doing research. The most important research being that of our ancestors. I am attaching a couple of websites with information.

https://www.alliancetocure.org/home/cavernous-angioma-in-depth/genetics/founder-mutations/ccm1-common-hispanic/

https://bacafamily.org/wp-content/uploads/2020/08/combinedgenealogyccm1newmexico-5.12.20-finalpdf.pdf

I tried to share this information with Phillip and his family many times but it fell on deaf ears.

I guess I shouldn't have been surprised that most of my family members were not familiar with the volunteer work I have done with Swan Songs - Austin over the past 20 years. It all began when my dear friend, Christine Albert was asked to sing for a friend who was at the end of life in 2005. The honor of being invited to sing at this powerful moment in someone's life was humbling and inspiring to her. So the idea was born to create an organization to act as a liaison between the healthcare and music communities, hence the non-profit "Swan Songs-Austin" was created. These intimate "musical last wishes" concerts are a blessing to both the family and the musicians. A favorite style of music is brought directly to the home or care facility and an intimate concert is held at no cost to the family. Committed to supporting live music in the community, "Swan Songs-Austin" compensates the musicians for each performance. I personally have donated a large painting to be sold at each annual "Swan Songs" fund raiser for many years and have created many slide shows for the event. "Swan Songs-Austin" is celebrating 20 years this year and has been such a blessing to our community.

From L-R - Craig Bentley, Jerry Don Motely, Sam Bentley, Debra Watson, Nathan Fajardo, Lynn Daniel, Christina Fajardo, Phillip Fajardo, Howard Kalish, Derek Hatley, Adriane Ethridge, and Nita Fajardo

 There are no words to express the feelings I have had recently with both my brother Phillip Fajardo and my friend Chris Gage in Hospice. Yesterday was a pivotal moment. Chris left the building and Phillip had a very rough night due to a brain bleed. Today it was hard to even move off of the couch. I found these photos from 15 years ago when we had a benefit for Phillip, the first time he was diagnosed with a brain tumor. The photos display how the Austin music community always come together for each other, offering pure love, light and the healing sound of music. Just remember we are all on this journey together. I'm sending so much love to everyone

24

August 18, 2025

We had an amazing Swan Songs concert for Phillip in Round Round. Thank you Karen McElhatten, Howard Kalish, and Nita Fajardo for helping me pull this beautiful musical event together for our beloved brother. Thank you Adriane Ethridge for driving me half way to meet Nita on the journey. I love you all!

August 25, 2025

There are no words to express the feelings I have had recently with both my brother Phillip Fajardo and my friend Chris Gage in Hospice. Yesterday was a pivotal moment. Chris passed away and Phillip had a very rough night due to another dreaded brain bleed. Today it was hard to even move off of the couch. I found these photos from 15 years ago when we had a benefit for Phillip, the first time he was diagnosed with a brain tumor. The photos display how the Austin music community always come together for each other, offering pure love, light and the healing sound of music. Just remember we are all on this journey together. I'm sending so much love to everyone.

There are no words to express the feelings I have had recently with both my brother Phillip Fajardo and my friend Chris Gage in Hospice. Yesterday was a pivotal moment. Chris left the building and Phillip had a very rough night due to a brain bleed. Today it was hard to even move off of the couch. I found these photos from 15 years ago when we had a benefit for Phillip, the first time he was diagnosed with a brain tumor. The photos display how the Austin music community always come together for each other, offering pure love, light and the healing sound of music. Just remember we are all on this journey together. I'm sending so much love to everyone.There are no words to express the feelings I have had recently with both my brother Phillip Fajardo and my friend Chris Gage in Hospice. Yesterday was a pivotal moment. Chris left the building and Phillip had a very rough night due to a brain bleed. Today it was hard to even move off of the couch. I found these photos from 15 years ago when we had a benefit for Phillip, the first time he was diagnosed with a brain tumor. The photos display how the Austin music community always come together for each other, offering pure love, light and the healing sound of music. Just remember we are all on this journey together. I'm sending so much love to everyone. ·

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Familial Cerebral Cavernous Malformation Hits Close To Home

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. 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 didn't kow at the time if they were pain killers due to the fall self prescribed drugs. Meanwhile, I had taken a trip to St Louis for a couple of weeks. 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 requested "Come Together." His wife, Deborah wasn't supportive of the visitors and even more perturbed by having music in her house.

Fortunately after a few days he got a new Hospice nurse who took him off of all the drugs that were totally knocking him out and he is now only prescribed head ache medication 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 played 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.

In the past 3 or 4 years, I have received 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. I have become online friends with a few distant cousins who have read my blog. Emailing and calling each other because we formed a connection over a disease that is rare and even more rarely detected. Sadly, I have done all of this research to help my immediate family and the information falls on deaf ears. 

June Is International Cavernous Angioma Awareness Month

June is International Cavernous Angioma Awareness Month. Cavernous Angioma, are also known as Cerebral Cavernous Malformations, or CCM. The different names reflect the ongoing understanding and classification of these mulberry-shaped abnormal blood vessel with thin, leaky walls that occur most often on the brain and spine, however they also occur on other parts of the body. CCMs in the brain can cause seizures, strokes, headaches, burning in the arms and legs and other neurological problems which can lead to potentially life-threatening complications. Unfortunately there is no medication to treat the condition and surgery is the only option. The biggest issue is that people are most often misdiagnosed. 

Some of the most common misdiagnoses for Cavernous Angiomas are:

• Brain Tumors
• Stroke
• Epilepsy
• Multiple Sclerosis

Through research and advocacy efforts, the Alliance to Cure Cavernous Malformation is working to improve the lives of individuals affected by CCMs and ultimately find a cure.

• CCM1 depletes Vitamin D over time, which can impact muscle and bone strength. All patients with CCM1 should take a vitamin D supplement.
• There is a connection between gut bacteria and an increased formation of lesions and bleeds. This connection appears strongest with foods that contain emulsifiers, ingredients like soy lecithin, carrageenan, polysorbate and others that help liquids combine in processed foods.
• Antibiotics that treat gram-positive bacteria also play a role. A reduction in gram positive bacteria in the gut allows the proliferation of gram-negative bacteria. The excess growth of gram-negative bacteria leads to a “leaky” gut and inflammation that can lead to the formation of more lesions. Antibiotics that treat gram-positive infections should be taken for the minimum time necessary.

Cerebral Cavernous Malformations are broken down in into 3 groups:

(KRIT1)CCM1

CCM2

(PDCD10) CCM3

It's considered a rare disease, not because it is rare to have this condition but it is rare to be correctly diagnosed. Actually about 1 in 200 people are affected by Cerebral Cavernous Malformations. I personally have tried to speak to all of my general practitioners and neurologists over the years and it is rare to find a doctor who is familiar with the disease.

Cavernous Malformations are hereditary in about 20% of people who have the illness. These are known as Familial Cerebral Cavernous Malformation or FCCM. They are caused by a gene mutation and passed down from generation to generation. The hereditary form of FCCM does not skip generations and each child of an affected person has a 50/50 chance of inheriting the illness. Those who have inherited FCCM usually have multiple Cavernous Malformations throughout their lives that get worse with age. 

The CCM1 gene mutation is so prevalent among descendants of early Spanish settlers in New Mexico that it's been called the "Common Hispanic Mutation" and it is VERY common in my bloodline. The most common type of FCCM in New Mexico is CCM1, which is caused by a mutation of the KRIT1 gene. Most often found in Hispanic-American families descended from the Baca family. When I first heard of the "Common Hispanic Mutation" it was thought that the only one that was hereditary was CCM1 but today I read that CCM1, CCM2, and CCM3 are hereditary. I am going to have to do some more research.

Clinical trials are underway to evaluate the safety and efficacy of atorvastatin in stabilizing CCMs. Fortunately I already take atorvastatin for my heart condition.

I have written in my blog about this subject more than once over the years because it's a huge part of my every day life not just because the illness itself is very difficult to live with but because I have to spend so much more time and money on my medications and annual tests. I just had my annual CT Scan with dye a couple of months ago. After I had the CT Scan, I woke up in the middle of the night with a sore throat. The next day it got worse, I had a runny nose and I was coughing. Long story short, I did some research to see if this was normal and some people do get flu like symptoms due to the dye but then I realized the symptoms were much worse and I had Covid. As if worrying about a CT Scan result wasn't bad enough.

I have blogged about my journey over the years just to keep track and in hopes that I may find others who have more information than I do. Funny thing is that I was contacted by two doctors, one from the University of Texas El Paso and another from the at the University of Texas Dallas who had obviously found my blog at the same time and realized I had done a lot of research. They both emailed me and asked if I would be interested in being a part of their clinical studies. I declined because of my ongoing issues with my health issues, traveling is not easy for me. For me, driving 15 miles to Austin is a huge ordeal, I can't even imagine going to Dallas or El Paso. Plus, at my age, I wasn't sure that I was up for being part of a clinical study involving the one thing that has made my life way more difficult than the average person my whole life. I would love to donate my body to the cause after I die, but I don't want to make my every day life any harder than it already is.

I was born with a Cavernous Hemangioma on my forehead and until recently, I couldn't find anything that linked the two but it seems that with continued research, they have decided they are the same thing as Cavernous Angioma on a different part of the body. They are both vascular malformations. 

I also have an aortic aneurysm on my heart. Here's the difference, aneurysms are formed by a weakness in the wall of an artery. Cavernous angiomas are abnormal clusters of blood vessels, specifically capillaries and veins, creating caverns filled with slow-flowing blood.

Here's a photo of my family on Christmas day 1955 with my mom holding me. You can see the Infantile hemangioma on my forehead. Most infantile hemangiomas grow for a period, then shrink and disappear on their own, often without treatment. Mine eventually turned into a flat pink birthmark on my forehead.

Fajardo Family - 1955
Gilbert, Nita, Felipe, Phillip Agnes and Christina

At the age of 15, I had a seizure but I didn't have another one until I was 25 and pregnant. I have been on seizure medication since then. Now, at the age of 70, I have focal seizures on a daily basis that cause various symptoms. It causes me to be highly sensitive to light, sound and temperature. It causes fear, anxiety and general strong emotions for no apparent reason. It causes changes in my heart rate and blood pressure. Now my daughter, Adriane suffers from many of the same symptoms that I have. She was diagnosed with a brain bleed at the New Braunfels hospital and they took her by ambulance to St David's in Austin, but by the time she was seen by a doctor there her brain had stopped bleeding and they told her she had a migraine and sent her on her way.

In closing, I am grateful that June is International Cavernous Angioma Awareness Month. It has been so disheartening to live with such a misunderstood disease my whole life. I pray that a miraculous cure comes soon.

Below are two other blogs I have written with more information about Cavernous Angiomas: 

https://christinafajardo.blogspot.com/2016/11/the-brave-and-broken-hearted.html

https://christinafajardo.blogspot.com/2016/08/the-common-hispanic-mutation.html

Below  are some links to resources if you or a loved one needs more information about Cavernous Angiomas:

https://www.alliancetocure.org/

https://www.facebook.com/InternationalCavernousAngiomaAwarenessMonth

https://unmhealth.org/stories/2023/12/hispanic-mutation-stroke-migraine-seizure.html