In October 2019, at the age of 23, Daniel went to the Optometrist to review his glasses because he was having headaches and it was time to see if the glasses were valid or not. The Optometrist noticed that the optical nerves of his right eye were swollen and immediately she referred Daniel to the Ophthalmologist. It was a really quick process to see the specialist and soon afterwards he referred Daniel to see a neurologist.

 

At that time, Daniel started having headaches and neck pain with frequent episodes of vomiting because of the pain, and two seizures. They made several exams, including MRIs, PET (positron emission tomography) scans, blood tests etc, and after 3 months of looking for a cause, without any substantial conclusion, they saw that the pressure inside the brain was high.  In March 2020 they implanted the shunt. Daniel had a total of 3 episodes of seizures.

 

During the year 2020, Daniel was relatively better; however, the episodes of headaches and neck pain were still occurring, and again they started looking for a cause.  In December 2020 they decided to do a biopsy on something they found under the cerebellum. The diagnosis came in January 2021 as a Diffuse Leptomeningeal Glioneuronal Tumor (DGLNT) and the information that we received from the oncologist was that this was a rare tumor, unknown by the oncologists in terms of treatment.  They decided to do 1 session of conventional chemotherapy (Temozolomide) for 7 days in January 2021, followed by 20 sessions of radiation therapy in February 2021, and then another session of chemotherapy (Temozolomide) for 7 days in March 2021.

 

In April 2021, while Daniel was in the hospital, we were told that the VP shunt was not draining properly, causing a high level of pressure in the brain.  The doctors decided to change the shunt to a programable one. After the surgery, Daniel was unable to walk or stand up again, and he had to have a foley catheter.

 

At the beginning of May 2021, Daniel was sent home, as a decision to have palliative care, because they didn't know what could do in his situation. So we introduced some holistic treatments and focused on a natural diet, as much as possible.  We included Turkey Tale Mushroom powder (one dose a day), and we started some physiotherapy to maintain the movement of the legs and arms as Daniel was in the bed for most time of the day.

 

The tumor shrunk about 90% until December 2021, but we were given no further treatment options until we were introduced to a new oncologist who suggested the drug used to treat Melanomas (Trametinib), thanks to the tireless research of Katie Bernard, whose son is also facing the same illness.

 

Daniel started the Trametinib in January 2022. However, in July 2022 the oncologist, after seeing that the tumor was stable, decided to give him a break because of side effects on his skin. After the third week of abstinence from Trametinib, Daniel started to feel nausea and pain in his bones, first on his back, after in the shoulders, and arms, spasms in his leg. 

 

After a huge episode of pain and fever, we went to the hospital for one week where they did a lot of tests and also a biopsy of the bone marrow because the hemoglobin was very low.  They discovered that the tumors had metastasized to the bone marrow. Immediately, Daniel started the Trametinib again, and clearly, after 4 or 5 days, there was no more pain in the bones. He is stable now with no symptoms and waiting for the next MRI in November. He is turning 26 years old this October 15.  

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Update:

Very sadly Daniel passed away on 9 December 2022.  We send all our love to his family.