It was 2014, and Pio was three and a half years old when he started getting migraines. Usually these would occur around 3-4am. I took him to several GPs that were in-network with my HMO at that time, and with repeated appointments to our GP, we were asked to have a plain CT scan. It showed nothing, and we were given paracetamol (Tylenol) to treat the morning migraines.
When he turned four, his speech suddenly slurred and his tongue shortened. This time, I brought him directly to an ENT specialist, who then referred us to a neurologist. We had an MRI with contrast this time, which showed a 4-cm mass around Pio’s brainstem. We had to have several MRI scans, and saw a lot of neurosurgeons before choosing the one we have now: Dr. Gerardo Legaspi, who specializes in skull base tumors and had experience with chordoma. At that time, Pio was the first pediatric case in our country (the Philippines).
I was told that the tumor could not be fully resected, and the surgeon only did decompression as he did the biopsy. Pio started to have vision problems in addition to his slurred speech and migraine. Pathology confirmed that it was chordoma. I was told that proton beam therapy (PBT) was the best approach for his case, but it wasn’t available in our country and we couldn’t afford to go overseas for it. We tried raising funds for it several times, but each year, his chordoma would compress a nerve, which would compromise his breathing or eating, so we’d be back to zero with our PBT fund.
Since his diagnosis in 2015, Pio has had three surgeries for decompression and two shunt surgeries, plus eight rounds of experimental chemotherapy. He is turning 11 years old on January 23, and he’s doing so well.
In 2016, we were told there was nothing medicine could do for him and that he is terminal. And it was heartbreaking; it still is. But through the years, we have learned to sit and live with the pain, and have transformed this into something beautiful and life-changing for others. He has come a long way from him being diagnosed and being put in palliative care. His vision, mobility, and gross motor skills may have deteriorated, and Pio may be far from being chordoma-free but he has achieved so much and helped so many with his art ever since he got diagnosed.
Pio is an artist, and his art has kept him alive more than anything in the world. Not only did it fund his many many treatments but he once said that art has helped him cope with pain. Pio has always tried to manage his pain on his own and always avoided complaining about it. Art has helped him express himself and what he feels. It has also helped him explore the world beyond our world by keeping him creative, and it makes him feel able to make a difference in our universe.
He has been working on a few pieces for his birthday so he can sell and donate the proceeds to his two favorite non-profit organizations here: PGH Medical Foundation, an organization that helps the hospital where he receives his treatments (Philippine General Hospital), and Brave Warrior Kids, a foundation that helps kids with curable cancer and spinal muscular atrophy get the treatment they need. He still accepts commissions from time to time, and sells some of his #aedanpioart merchandise too.
As a mom, I’ve found support from the chordoma Facebook group, and the Chordoma Foundation’s resources and updates. I have also found solace and hope in stories of patients, survivors, and loved ones of patients, too. We also have a community online from Pio’s Facebook page, which has rallied with us in fighting this uncommon disease. They have been helping and supporting him through purchasing his art, and with the healthcare system in our country (we have no insurance), have been one of the biggest sources of support in funding his treatment. I’ve been able to make friends through these online communities. It makes a difference to know that we aren’t alone in this and that someone out there truly understands because they’ve experienced what we’re going through.
If I were giving advice to another parent whose child has just been diagnosed with chordoma, I’d say to always trust your gut, and that it doesn’t hurt to ask for another opinion. It’s also very helpful to get fully educated about chordoma through resources from the Chordoma Foundation.
The Chordoma Foundation has played a vital role in our journey because it is where I have gotten verified and accurate information about this disease. I was also able to get in touch with a lot of doctors overseas because of the Foundation, which gave us free consultations regarding Pio’s case.
It wasn’t easy to accept the diagnosis. And if ever some parent is also going through the same thing I went through a few years back (realizing that my child is going to be disabled by this disease), I hope you are able to read this and I pray these words give you comfort:
Disabilities do not mean unhappiness. They do not have to equate into something terrible. It does not always mean that your kid would have to live a sad life. Your child’s disabilities are just part of who they are.
Do not let your kid’s diagnosis or disability make you feel down; though please know that it is a valid emotion, it’s also what you make of it. It doesn’t have to make you feel miserable forever.
Let go of the thoughts of how scary the future is or what your kid is missing out. These thoughts we keep as parents prevent us from truly seeing how our kids are resilient — and how life can still be beautiful for them.
If you or a loved one need help navigating a chordoma diagnosis — or would like support at any stage of your journey — our Patient Navigators can help answer your questions, provide information about treatment guidelines, help you find qualified doctors, and connect you with others in the chordoma community who have been through a similar journey. Learn more here.