Meet Nicolas Alfaya

  • October 07, 2020

We are a happy family that lives in Medellín Colombia: My name is Diana (mother) and my husband is Daniel. Together we have a daughter, Laura (17 years old) and a son, Nicolás (12 years old), and last but not least we have a dog name Candela.

We want to share with the world how renal medullary carcinoma (RMC) has impacted our lives. It is our desire that sharing the story of our son, Nicolás will help educate others about this aggressive form of kidney cancer that predominately affects individuals with sickle cell trait. Knowing that we are not alone on this journey gives us hope and increases our desire to help other families as well.

Before COVID-19, it can be said that Nicolás was a child, perhaps a little short and thin, but very active and athletic. Suddenly everything changed.

The chronological sequence is as follows:

May 26, 2020 was the first time that Nicolás felt minor pain in his back, three weeks later, on June 17th, he had his first consultation with the doctor. The diagnosis was muscular discomfort due to physical inactivity as a result of the pandemic.

The first week in July, Nicolás had a MRI. The images revealed a tumor in his left kidney. On July 10th, he had emergency surgery to remove the left kidney and urethra. The cancer had also metastasized to the lymph nodes and aorta artery. The biopsy from the first specimen showed that Nicolás had RMC. At Hospital Pablo Tobón Uribe (HPTU) in Medellín, four pediatric oncologists were assigned to Nicolás’s case. They seemed to be honest, transparent and professional. One of them stated, “out of 15 years practicing in the pediatric department, he had not treated a case like this one.”

On August 7th, a sample was sent to a hospital in another country, (Sant Joan Deu Hospital Barcelona) and the RMC diagnosis was confirmed. It was at this time, the Sant Joan Deu Hospital recommended to HPTU team that they must contact Dr. Pavlos Msaouel at UT MD Anderson Cancer Center in Houston Texas.

On August 11th, a second operation was performed with the support of a cardiovascular surgeon because the second MRI revealed that a portion of the mass still remained from the first operation. Unfortunately they were not able to remove the tumor.

On August 14th, Dr Msaouel recommended that Nicolás be given Cisplatino, Paclitaxel, Bortezomid and Gemcitabine and even though our hospital, HPTU in Medellin have these medications, the state institution does not allow the health service provider company to supply Bortezomid to minors.

On August 20th, chemotherapy: Cisplatino, Gemcitabine and Paclitaxel were started and on August 27th the Judge ruled that Bortezomid could be given to Nicolás.

It is now the first of October and before Nicolás could receive his second cycle of Chemotherapy, the COVID-19 had to be negative. In early November, he will have another MRI, which will reveal the effectiveness of the chemotherapy.

In this short period of time we have had to learn and adapt to our new reality, but we still have a lot to learn.

Our son Nicolas, was reflecting on a homework at school about pandemics:

“In the past they died from diseases that we now cure, I would like to be in the future to cure my cancer”

Thanks to a globalized world and people who share their experience and knowledge there is a hopeful future.

Thanks Dr. Pavlos Msaouel and Dr Tannir from UT MD Anderson Center to be passionate to find a cure for the RMC, we believe in you. We believe in our oncologist’s team from Colombia, the Doctors from Barcelona, the foundations that are creating RMC awareness and provide support to all the patients.

Thank you Ritchie for creating this space and not making us feel so alone.