Renowned Pediatric Heart Surgeon's Legacy

Hi, My name is Brinson Camp and I am fundraising to help support the family of my dear friend, and world renowned pediatric cardiac surgeon, Dr. Juan León Wyss. Juan ended his brave and grueling battle with cancer peacefully near his family in Santo Domingo, Dominican Republic on Thursday morning January 18th, 2024. Juan spent his life dedicated to others and worked tirelessly and relentlessly performing the most complex surgeries in the world to give children born with complex heart defects a second chance at life.

He learned from and worked with some of the brightest and most progressive surgeons in the world including Dr. Aldo Castañeda (pioneer and former Chief at Boston Children's) and Dr. Bill Norwood and played in integral role in establishing the most renowned pediatric heart surgery programs in Central America and the Caribbean. Personally, I have watched many heart surgeons operate and can clearly say Dr. León was the best of the best. He brought a level of care to the Dominican Republic the island has never seen and probably won't see again for a long time. He will be greatly missed by people all over the world.

If pediatric heart surgery was his biggest passion and purpose, his family was clearly his biggest love. In his last years, he shifted his primary focus to his family, his beloved wife Maria José Lau de León and his two incredible boys Juan "Matías" and José "Martín", and to God. His family was his everything and what kept him fighting and is salvation is with God in Heaven.

My prayer for Juan and his family- Dear God, please use Juan's legacy and example to protect his young family and may we never take our time on this earth for granted. May his boys grow into men remembering the hard work and fearless fight of their extraordinary father and may Maria José find peace in her unwavering support and exemplary toughness. May we all use Juan's life as an example of hard work and willingness to fearlessly fight and overcome the obstacles in our path. May his soul rest in eternal peace and may he be a guardian angel to us all. As long as we live you will never be forgotten.

One week ago today on Sunday January 14th we received a note from Maria José that read (translation in English below):

Estimada Familia, estimados amigos, hemos salido de la reunión con el equipo médico del NIH. Nos han dicho que en el estado actual que se encuentra Juan en estos momentos sería demasiado riesgoso someterlo a la terapia, pues su pulmón está totalmente tomado, tiene baja función pulmonar y bajo peso.

Lo que ellos recomiendan es que Juan reciba nuevamente quimioterapia, una segunda línea (otra variedad) para ver si se logra retrasar el avance de la enfermedad y estabilizar, para poder nuevamente evaluar la posibilidad del estudio.

El Señor sabe el porqué de las cosas, hemos decidido con Juan conversarlo con calma, consultarlo con el oncólogo en Suiza y ver si merece la pena someterse a otra ronda de quimioterapias. Agradecemos a todos por sus oraciones, que Dios nos ilumine.

Un abrazo para todos!

Dear Family, dear friends, we have left the meeting with the NIH medical team. They have told us that in the current state that Juan is in at the moment it would be too risky to subject him to the therapy, since his lung is completely taken, he has low lung function and low weight.

What they recommend is that Juan receive chemotherapy again, a second line (another variety) to see if it is possible to delay the progression of the disease and stabilize it, to be able to evaluate the possibility of the study again.

The Lord knows the reason for things, we have decided to talk calmly with Juan, consult with the oncologist in Switzerland and see if it is worth undergoing another round of chemotherapy. We thank everyone for their prayers, may God enlighten us.

A hug for everyone!

Juan decided Monday (Jan, 17 2024) to immediately start a new round of Chemo in Santo Domingo and then would return to Zurich if he responded to the treatment. Despite having always stated that if Chemo was his last resort he would choose peace and comfort, stubborn in his conviction for his family, he fought the pain until his last breath. May his soul rest in peace and may his family find solace in knowing Juan was an extraordinary human being.

Summer 2023, (original fundraising note for life flight):

Juan was recently emergency life flighted from the Dominican Republic to Switzerland for a total bill of $75,000 out of pocket. At the end of 2022, had a few operations in the US to remove tumors inside his chest and was progressing with his cancer treatment (and operating on children!) back in the DR, when suddenly he developed complications that required the placement of 3 chest tubes and he needed to rethink his plan. The only logical place he had to turn was to his oncologist back in Switzerland... (read the full story below)

Although he is one of the most specialized pediatric surgeons on the planet based on where he lives he only earns a fraction of his counterparts in developed nations. He is very worried about the financial security and well-being of his wife and two young boys for years to come, and this burden of an astronomical flight bill should be the least of his worries currently. He has already had to come out of pocket a couple hundred thousand dollars in travel and health related expenses back and forth the US over the past 3 years and would never accept support, but this plane flight was something straight forward enough for me to finally get his blessing to create this page!

HERE IS OUR BACKGROUND STORY:

Thanks for reading and considering donating to help ease my friend's burden!

I work in the medical device industry primarily focused on products related to open heart surgery in children and adults. I have spent the past 10 years working in Latin America and have had the privilege to meet some of the most incredible surgeons and witness the unbelievable operations they carry out to rebuild children’s hearts and give them a new lease on life. These surgeons in the developing world are often pulling off the most complex procedures with only a fraction of the resources that exist in developed nations. Early in my career I had to opportunity to meet Dr. Juan Leon who had recently uprooted his family from Guatemala and arrived in the Dominican Republic as the undisputed, mostly highly technical, and well trained Pediatric Cardiac Surgeon to ever establish a full-time practice in this country with a population of more than 10 million people. We immediately established a deep connection and friendship and found synergies that allowed us both to reach further in our mission to mend tiny hearts.

During the early days of 2020 right at the onset of the Covid-19 pandemic, I received a call from Juan’s wife, Maria Jose, that Juan was having unbearable migraines, scans had found masses on his brain and lungs, and he was being life flighted to his home country of Switzerland for Medical treatment. In April 2020, Juan was diagnosed with Non Small Cell Lung Cancer Stage IV B and never smoked a day in his life as is common in the group of patients with the EGFR mutation. Because his cancer was first discovered at a late stage, surgery-chemo-and radiotherapy were not options but under a new Tirosinekinase Inhibitor (Osimertinib) he was able to reduce his right lung primary tumor, and both lungs, lymph nodes, spine and brain metastasis went to sleep and disappeared within the next months (they are still there but the medication is still blocking them). One large brain mass had to be surgically removed, with complete recovery. The mean survival time under this medication is 18 months, so he is for sure one of the fortunate to survive double as expected with now over 3 years of survival and counting!

In the meantime, between initial diagnosis and now, he was able to return to his work as pediatric cardiac surgeon at CEDIMAT in the Dominican Republic and helped over 400 children by repairing their hearts and developing a postgraduate university training program that has now 3 Dominican fellows in training to become pediatric heart surgeons. For the past 9 years in the DR, he has been to only certified pediatric cardiac surgeon for the whole island of Hispaniola (DR and Haiti) with over 20M people besides medical missions that visit us and contribute to his program. Even with his remarkable level of skill and experience (based on global wage inequality) he earns an annual salary that is approximately one-tenth (1/10th) of what his counterparts in the US make.

While many including myself encouraged Dr. Leon to rest and recover and ease back into his work, he was relentless in his pursuit to continue intense operations and reconstructions on a never-ending waitlist of children hopeful for life-saving operations. During 2021-2022 he was going back and forth to Ft. Lauderdale for treatment and monitoring and real hope for a cure came in November 2022, when he was accepted for an experimental trial at the NIH for TIL therapy (Tumor Infiltratin Lymphocytes therapy). His primary tumor was removed by VATS and he also got a leucopheresis (extraction of all circulating white cells). His lymphocytes were cultivated, reproduced and tested in 3 months so he was just about ready to start this new therapeutical option when unfortunately, he developed suddenly massive pleural effusions and pericardial tamponade that pulled him out of this study for now. This is still an option down the road but until he can get healthy enough to qualify again, his lymphocytes were frozen at the NIH outside of Washington DC.

Upon developing these massive pleural effusions and pericardial tamponade he had 3 chest tubes implanted and the only place he had to turn for worldclass medical coverage for this tricky cancer was back to his oncologist in Switzerland. So, in February 2023 (chest tubes now removed) he was once again life-flighted back from the Dominican Republic to Switzerland. Now finally I get to the part to reiterate why he needs our financial support! The original cost of the air ambulance from Santo Domingo to Zurich was $115,360 USD and was reduced to $75,078 by picking a patient up in Guyana and dropping them in Paris. So can you please help reimburse him for this flight that gives him his best last shot!? With his Swiss nationality, his healthcare costs are covered when he is there and he and his wife are staying with his 93 year old father and have other close family nearby. His two teenage boys Matias and Martin are still back with their maternal grandmother in the Dominican Republic continuing their secondary studies (sports, music, etc.), while Juan’s wife is currently with him in Zurich.

The only option for now is chemotherapy and he started right after landing in Switzerland. Now he has completed the first 6 rounds and is being infused weekly with a break expected soon. He is also receiving Cisplatin and Pemetrexed. A total of 4 cycles (8 halves) are still planned and another 4 cycles will follow after another 3 months. He says he hopes that he can find time in between to return and work again but is too early to know for sure. What he can say is that one right axillar metastatic large and painful lymph node was gone after the first dose, and he feels a different (more positive) pain in his right chest and mediastinum, “it now feels more like a fight now than invasion!” He is also beginning to gain steady weight for the first time since his diagnosis up more than 5kg. BEAT THE BEAST!

Thanks for reading and your support! Much love and God Bless!