Gracias a Dios y al Senor de los Milagros. Este es el mes morado!!

Dear Friends,

Yhoalibeth arrived in NY wearing her purple habit and she registered into the Mt. Sinai Hospital with that same habit. Thanks to God and to “El Señor de los Milagros” (The Lord of Miracles). This is the purple month (in Peru, those devout to El Señor de los Milagros wear a purple habit).



You can’t imagine how I slept last night, I slept like a baby, as if the air was all coming out of a balloon, although with a mammoth headache. I was stressed out all day long, but luckily I had to return to the office and see patients the whole day, this kept my mind busy and not only thinking of Yhoalibeth. Yesterday’s heroes were the doctors, surgeons and nurses, and of course, my Eli and our son Andrew who were there throughout the vigil, and friends like Ana Maria Estrada and Pedro Serka, who took of their time to accompany her also. As I was telling you, last night we left Yhoalibeth sedated and sleeping, and we noticed that Evelyn was a bit calmer, of course she was able to talk on the phone to Martin her husband, who is in Lima and tell him that his daughter was out of the OR. And I think we finally saw her smile a bit. And I had forgotten to tell you that she was in the VIP room of the Pediatric ICU, this means in the room directly behind the desk where all the nurses and doctors of the floor are found…Yhoalibeth was the star patient.

This morning we arose at the crack of dawn and we return to visit them, we bought our coffees and for Evelyn a juice, she is not a coffee lover. We found Yhoalibeth surrounded by people, constantly being examined by nurses and doctors alike. We noticed her swollen face, a normal edema as a result of the type of surgery performed. But all is as planned, most of the tumor mass was extirpated, as much as possible, what remains is buried in a deep and dangerous place, hopefully it will be treatable in a near future by other means. The right eye was salvaged without the need of extirpating it, but perhaps it will not have much functional vision. We’ll see how it evolves.

They said that the first things she said when she awoke were: I want grapes, where is my mom and dad, and where is Andrew, and aunt Eli, and uncle Jorge…not a dry eye, time for my tissue boxes.

As I drove back again to my office, we were granted the second miracle in two consecutive days…I was receiving a call from the Ronald McDonald House to let us know that there was now a room available for Yhoalibeth and Evelyn starting Friday! And that was the result of persevering and multiple calls from yours truly, he, he, he…in other words…one doesn’t get anything unless one asks, or maybe they were tired of hearing my voice. And thanks to all of you, from here and there, we have the funds to finance their stay here, and more, that is to get their groceries and food.

Today, as I worked with that peace of mind that is difficult to explain or describe, knowing that in being able to bring Yhoalibeth we all have accomplished something very special. And it is not just me, but it was dozens and hundreds in two continents who contributed something to make this a reality. As there are people like Peruvian Army Colonel, Rodrigo Lavado (I emphasize, from the good side of the Lavado family, he, he) who was the direct contact with Yhoalibeth’s family all those months and during many occasions he acted as our “chasqui” passing on information back and forth, our go-between. Or like Ana Maria Estrada, a Peruvian friend who lives in Miami and NYC, a theatre producer (Ollantay ), artist, multitalented, twice a volunteer en the VOSH-New York campaigns. Ana Maria took Yhoalibeth by the hand to have her repeat some MRIs in August, and got out her checkbook for it, and she obtained both their passports in one day. Fernando, of the Parodi dynasty of our school, was another key piece in this real-life oeuvre, because without knowing the General Manager of Lan-Peru, the airline, possibly they would still be sitting in Peru waiting to get here for the surgery. So thanks you Mr. Rodriguez Larrain, thank you Susana and thank you Claudia. And there is Aurora Riva and Donato Lavado, (this last one insists that he cried when he read about the case, which is not true as crocodiles don’t shed tears!), they have from Lima, so kindly given their support in so many things in these last months, be it by making telephones calls on my behalf, coordinating the setting up of accounts for the donations and then getting it all together, filling and completing the forms for visas and setting up the appointments at the US Embassy up to and including the hiring of a taxi to take them to the Jorge Chavez international airport, escorting them to the LAN airline counter and seeing them off at the Security Gate….what more could I possibly ask from my childhood friends.

And I have yet to mention the medical personnel of Mt Sinai. Where do I start? With my friend and campaign associate when we have humanitarian drives….Dr. Julius Shulman, who helped me incentivize our Mt. Sinai colleagues. The Chair of the Neurosurgery Department, Professor Joshua Bederson, the Chair of the Department of ENT, Professor Eric Genden, and Dr. Ebrahim Elahi, ophthalmologist and facial plastic surgeon were the ones who performed the surgery. Drs. Sheryl Gooden and Irene Osborne, the anesthesiologists who ensured that Yhoalibeth would feel no pain and be comfortable. Our pediatric collaborators were Drs. Ramon Murphy and Dr. Ian Holzman, and I am unable to mention each of the many other doctors, radiologists, medical students, nurses, etc, etc. who have contributed something to make it all possible.

And thank you to all who contributed material and in spiritual ways like prayer and positive energy. The worse is over for Yhoalibeth and recuperation is what remains now, and hopefully the tumor will not grow back. We are aware that the diagnosis of a plexiform neurofibroma always has a reserved prognosis regarding how and when it progresses, all we have done is to prolonge Yhoalibeth’s life, indeed buy her some time. Once she is given the all clear she will require a continuing follow-up monitoring and care once back in Lima. We are and will continue to think how we can continue to support this endeavor.

As you can see, this has been team work. Without all of you it would not have been possible. Yes, I admit that it has been a very long road to reach the goal of having the surgery here in NY, but I would do it again. It may also perhaps have been the most important thing I’ve done in my life, besides our sons Andrew and Jonathan. The one thing we expect from Yhoalibeth is that she makes the best of her life, and that she enjoys a healthy future with many opportunities as she has her entire life ahead of her, and that she invites us to her wedding.

Thank you.

Health and Love.

Joje (Dr. Jorge Won)

PS: An aside: Dr. Sheryl Gooden will be attending a conference in Lima, in February 2011…so santarosinos in Lima, please extend your courtesy to her and make her feel at home. And don’t saturate her with too much Peruvian food so that she will always keep returning.

Amigos,

Yhoalibeth llego a NY con su habito morado, y entro al Hospital con ese mismo habito. Gracias a Dios y al Senor de los Milagros. Este es el mes morado!!
No se imaginan como dormi anoche, en paz, como un pichoncito, como que se deshinflaba un globo lleno de aire, aunque con un senhor dolor de cabeza. Ayer todo el dia estresado, pero suerte de que tuve que volver al consultorio y atendiendo todo el dia, cosa que me mantuvo con la mente ocupada y no pensando solo en Yhoalibeth. Los heroes de ayer si fueron los doctores cirujanos y enfermeras, y por supuesto mi Eli y nuestro hijo Andrew quienes estuvieron durante toda la vigilia en el hospital, y amigos como Ana Maria Estrada y Pedro Serka quienes se tomaron su tiempo en acompanharlas tambien. Como les decia anoche, dejamos a Yhoalibeth sedada y durmiendo, y vimos a Evelyn mas tranquila, claro que pudo hablar por telefono con su esposo Martin en Lima, para contarle de que su hija ya habia salido del quirofano. Y creo que finalmente la vimos sonreir un poco. Y me habia olvidado de contarles de que ella estaba en el cuarto VIP de Cuidados Intensivos Pediatrico, o sea el cuarto directamente detras de la mesa en donde estan todas las enfermeras y doctores del piso....Yhoalibeth es la paciente estrella.
Esta manhana madrugamos y volvimos a visitarlas, compramos nuestro cafes, y para Evelyn un jugo, porque no es amante del cafe. Encontramos a Yhoalibeth rodeada de gente, constantemente examinada por enfermeras y doctores. La notamos con la cara hinchada, edema normal despues de una cirugia de tal indole. Pero todo esta como planeado, se extirpo lo mas del tumor que se pudo, lo que quedo esta en un lugar muy recondido y peligroso, ojala tratable en un futuro por otros medios. Se pudo asimismo salvar el ojo derecho, sin la necesidad de extirparlo, pero quizas no tenga mucha vision funcional. Ya veremos como evoluciona.
Dicen que lo primero que decia cuando se desperto eran: quiero uvas, donde estan mami y papi, y donde esta Andrew, y tia Eli, y tio Jorge.....es como para sacar mis sabanas.
Mientras manejaba de vuelta a la oficina, recibimos un segundo milagro en dos dias consecutivos....me llamaban del Ronald Mcdonald House para comunicarnos de que ya habia un cuarto disponible para Yhoalibeth y Evelyn empezando este viernes!! Y eso es fruto de perseverancia y llamadas multiples de su seguro servidor, je-je....en otras palabras...uno no recibe si no pide, o ya estaban cansados de escuchar mi voz. Y gracias a todos Uds., de aca y alla, tenemos los fondos para costearles esa estadia, y mas, o sea para conseguirles viveres y comida.
Hoy chambeando lo hice ya con esa tranquilidad dificil de explicar o describir, sabiendo que todos nosotros hicimos algo muy especial, el de poder traer a Yhoalibeth. Y no soy solo yo, sino fueron decenas y cientos de dos continentes que en algo contribuyeron para esta realidad. Porque hay personas como el Coronel EP Rodrigo Lavado (repito del lado bueno de la familia Lavado, je-je), quien fuera nuestro nexo directo con la familia de Yhoalibeth por todos esos meses, de todas esas oportunidades que fue nuestro chasqui, pasando informacion de un lado al otro. O de Ana Maria Estrada, amiga peruana que vive en Miami y NYC, productora teatral (la de Ollantay pe), artista, multifacetica, voluntaria en dos ocasiones en las campanhas VOSH-New York quien directamente llevo de la mano a Yhoalibeth a repetir las resonancias en Agosto, y saco su chequera para esos tests, y les consiguio los pasaportes a las dos en un dia. Fernando de la dinastia Parodi del colegio, fue otra pieza central de esta obra de la vida real, porque sin el conocer al Gerente General de LanPeru, quizas todavia estarian ellas en Lima, esperando por la cirugia. Asi que gracias Sr. Rodriguez Larrain, gracias Susana y gracias Claudia. O de Lidia Eyzaguirre, Aurora Riva y Donato Lavado (este ultimo insiste que lloro have poco al leer algo, cual es mentira porque cocodrilos no tienen lagrimas!) quienes gentilmente han apoyado en tantas cosas estos ultimos meses desde Lima, ya sea haciendo llamadas por mi, coordinando, juntando las donaciones, llenando los formularios para las visas, sacarles citas en la Embajada, hasta hacer posible que un taxi las lleven al Jorge Chavez, y de acompanharlas hasta el mostrario de LAN, y despedirlas a la entrada de seguridad del aereopuerto......mas no puedo pedir de amigos de infancia.
Y eso de que todavia no hablo del personal medico del Mt. Sinai. Donde empiezo? Mi amigo y companhero de armas cuando hacemos campanhas humanitarias...el Dr. Julius Shulman, quien ayudo a estimular a los colegas del Mt. Sinai Hospital. El jefe del Dpto. de Neurocirugia, el Professor Joshua Bederson, y el jefe del Dpto. de Otorrinolangologia, el Professor Eric Genden, y el Dr. Ebrahim Elahi, oftalmologo y cirujano plastico facial fueron los que operaron. Las anastesiologas Dr. Sheryl Gooden y Dr. Irene Osborne se aseguraron de que Yhoalibeth estuviera comoda y sin dolor. El Dr. Ramon Murphy y Dr. Ian Holzman fueron los pediatras que colaboraron, y eso que no puedo mencionar a los tantos otros doctores, radiologos, estudiantes de medicina, enfermeras, etc., etc. que en algo hicieron todo posible.

Y gracias a todos los que contribuyeron, en forma material, asi como en forma espiritual con oraciones y energia positiva. Ya se paso lo peor para Yhoalibeth, ahora es solo recuperarse, y ojala que no vuelva a crecer el tumor. Estamos conscientes de que el diagnosis de neurofibroma plexiforme siempre tiene un prognosis reservado respecto a como y cuando progresara, lo unico que hemos hecho es prolongarle la vida un poco a Yhoalibeth, y comprarle tiempo. Se necesitara mucho seguimiento cuando este de alta y de vuelta en Lima. Estamos y seguiremos pensando en como continuar apoyandola.

Como ven, ha sido un trabajo de equipo. Sin todos Uds. no hubiera sido posible. Si, confieso que ha sido una camino bien largo hasta llegar a esta meta de la cirugia aca en NY, pero lo haria de nuevo. Tambien ha sido quizas lo mas importante que he hecho en mi vida, aparte de procrear a Andrew y Jonathan. Lo unico que esperamos de Yhoalibeth, es que aproveche de su vida y que tenga un futuro saludable y llena de oportunidades, ya que tiene toda una vida delante de ella, y que nos invite a su boda.

Gracias.

Salud y amor.

joje

PD: Un aparte, la Dr. Sheryl Gooden estara en una conferencia en Lima en Febrero 2011....asi que Santarrosinos limenos, favor de agasajarla y hacerle sentir como en casa. Y no la empachen con mucha comida peruana, para que siga volviendo siempre.

Yhoalibeth's Surgery was a SUCCESS!

Yhoalibeth's surgery was a SUCCESS and she is resting comfortably. Big Thanks to everybody involved especially the amazing doctors at Mt. Sinai. Today she begins the road to recovery!

Andrew

@ Mt Sinai for Yhoalibeth's Operation

"

Quiero mi Caramelo!" That was the last thing Yhoalibeth said to me this morning as she went into the OR shortly after 8am this morning. Needless to say, emotions are high as I sit here in the pediatric ICU waiting room at Mt. Sinai. As expected, as I look around, the room is filled with worry and nervousness. It is a big day, this can truly be a life-changing experience for Yhoalibeth and her entire family. But with such a great opportunity also comes great apprehension and anxiety. I'm happy to say that she was in very good spirits, smiling, and laughing with the doctors even as she was being prepped for the OR. She kept asking me: "Andres (or as she says Ambres), me puedes consiguir unas papas fritas? (can you get me some french fries)?", she was starving as she hadn't eaten since 7pm the night before.

The doctors say this a very big and complex surgery that will last 8-10+ hours. Its days like today that really make your appreciate what you have. The great hearts of the surgeons lending their expertise to her case and the bravery of 4 year-old Yhoalibeth to go into the OR and battle this head on! I ask that we all pray for her. God Bless you Yhoalibeth!
Andrew

Faith

We left our house this morning at 6:00 AM, since the Mt. Sinai Press Dept. needed to interview us before the surgery, and then Drs. Shulman, Bederson and Genden. I left for my office when they took Yhoalibeth in the OR around 8:00 AM. She was in good spirits, playing, singing...but her mom was very nervous. My son Andrew will be there the whole day, my wife Eli will be there shortly, as will some new friends they have made during these days in New York. Now we just have to have faith in the hands of the surgeons, and in God.
Dr. Won

Salimos a las 6:00 AM de la casa, porque la Oficina de Prensa del Hospital Mt. Sinai querian entrevistarnos a nosotros, y despues a los Drs. Shulman, Bederson and Genden. A eso de las 8:00 AM la llevaron al quirofano, asi que me vine a mi consultorio a esperar. Yhoalibeth estaba de buen espiritu, jugando, cantando...pero su mama estaba nerviosa. Mi hijo Andrew estara todo el dia, Mi esposa Eli ira pronto a la vigilia, asi como algunos nuevos amigos que han conocido en estos ultimos dias. Ahora solo tenemos que tener fe en las manos de los cirujanos, de Dios, y del Senhor de los Milagros. Dr. Won

Ready for the Big Week Ahead!

One complete week for Yhoalibeth and her mom at our home, and it certainly feels like they are part of the family. And what a week, arrived on Monday, Tuesday was filled with appointments with all the doctors, Thursday was full day of pre-op tests, repeat MRI, Cat scans, etc. On Friday Ana Maria took her to the Lion King at Broadway. I have not written on the blog since tuesday, since I had to go back to my office the next day, and glad we have been very busy till yesterday. Last night took Yhoalibeth to a surprise party for a friend, and she enjoyed playing with another girl. Today we went to church together, and afterwards to a BBQ. These coming days will truly be intense! Dr. Jorge Won.

Yhoalibeth y su mama solo llevan una semana en casa con nosotros, y ya parecen parte de la familia. Y que semana que tuvimos, llegaron el lunes, el martes fue dia completo para consultas con todos los doctores del caso, miercoles fue dia de descanso, y el jueves completo para los examenes pre-operatorios. Y Ana Maria las llevo a Broadway para ver Lion King el viernes. No he escrito en el blog desde el martes ya que tuve que volver al consultorio el dia siguiente, y no nos podemos quejar porque estuvimos sumamente ocupados con consultas. Anoche nos fuimos una fiesta sorpresa para una amiga, y Yhoalibeth se gozo jugando con otra ninha. Hoy fuimos a misa todos juntos, y despues a un BBQ.

Adventures on Mt. Sinai

In a sentence. Today was a very, very, very long day! We left for the hospital a little past 7AM. We spent close to 11 hours at the hospital as Yhoalibeth went through a battery of Pre-OP tests and scans. At times she became very restless, as well as very scared as she was put under general anesthesia and on a breathing tube. Dr Cheryl Gooden, the anesthesiologist, went above and beyond in making us all feel at ease and informed throughout the day, truly a great doctor and better person.




It was a stressful day, and once again we were reminded today that the operation that she will soon be embarking on will be a very complex and potentially life-threatening journey. I ask that everybody keep her in our hopes, in our prayers, and in our hearts.

Andrew

Day 3: Cocina Criolla and Preparing for a Big Day!

Today started off with little Yhoalibeth waking me up really early this morning as she snuck into my room. Fortunately she went back to sleep and didn't wake back up until around 930AM. Considering what life has thrown at her she amazes me day in day out with her infectious smile and that incredible disposition towards life. Later in the day we had gone food shopping for some Peruvian ingredients so that her mother could give us some pointers on some classic dishes criollas. With her help, we were able to whip up some amazing Seco de Res and Aji de Gallina! Later in the day we took a ride to the office as we prepared for the logistics for a busy Thursday. Manana she is scheduled to have a battery of pre-surgical tests done that will last close to 5-6hrs. CT Scans, MRIs, MRAs, and Cranial CTAs.

Later that night on the way home, I noticed something very interesting
walking back to the car on the streets of Jackson Heights. People would stare at her and her eye! Don't get me wrong Yhoalibeth is fully aware of her situation and how she looks "different" then other 4 year-old. Nonetheless, she just kept on smiling and kept on walking back to the car! 4 years old and yet such a hopeful attitude toward life, really puts things in perspective. Good Night, Andrew