Making Every Moment Count for Jose

How We Met 
I came to know Jose through his mom, Lupe.  She came to work with us about a year before Jose was born.  Working together at a small business, we quickly became friends.  When Jose was about 3, he started having intestinal trouble.  Naturally, Lupe and I talk about the kids, and for about 18 months, she continued to have to rush little Jose to the doctor, urgent care or the emergency room. The doctors all told her that it was just constipation.  When the constant pain caused him to stop walking, the doctors finally took a closer look.  Right around his 5th birthday, we got our answer.   

Me llamo Dena.  Vine a conocer a José a través de su madre, Lupe.  Ella fue contratada en nuestro negocio un año antes de que José naciera. Trabajando en uno compania tan pequenia,pronto nos convertimos en mejores amigas. Por supuesto, hablamos acerca de nuestros niños, incluyendo Josésito. Cuando José comenzó a tener problemas intestinales , los médicos le dijeron a Lupe que era  estreñimiento.  La continuación, del dolor hizo que José no pudiera ni caminar los médicos finalmente se dieron cuenta de que era grave.  
How I hate that wretched word! It's a rare cancer, the most common solid tumor found in children.  Jose was born with a defect on Chromosome 1, and that, coupled with a defective protein, caused the terrible disease to grow in this sweet boy.   Immediately, treatment began but Neuroblastoma is rare and Lupe and I are the kind to do research, always seeking answers.  The statistics  are not encouraging. Still, beneath the pall of gloom, we soldiered on, her accompanying a frightened, tired child on a seemingly endless parade of doctors, scans and hospital rooms, and I praying and trying to help in any way I could. 

Despues de barrios estudios los médicos desubrieron que se trataba de un cáncer raro  infantil llamado “neuroblastoma”. Para el tiempo que nos dimos quenta del diagnostico, el cancer ya estaba en etapa 4, requeria de tratamiento agressivo para a tacarlo, lo que condujo a menejar de 4 –5 veses por semana. A lo hospital de Portland a quimoterapias, radiacion, y chequeos. Despues de meses de esto constantamente, las finances y energias degotaron.  
Previous Fundraising 
 We did a lot of fundraisers, trying to keep a family financially solvent during unimaginable hardship. We sold doughnuts, Lupe made and sold tamales, my kids and I had lemonade stands, and helped where we could, taking orders and delivering etc.  When Jose wanted a puppy, his family raised the money. It was stolen by an unscrupulous breeder in an online scam, despite hearing Jose's story, and his circumstances.  Somehow, we were able to help raise more funds, find a local breeder, and get Jose a puppy. Putting a smile on that face, and giving him something to look forward to was all that mattered. 

 Tuvimos varios recaudadores de fondos para pagar las facturas y mantener el gas en el coche. Fueron tiempos  exhaustos y oscuros. Por la Gracia de Dios, José logro vencer el cáncer por primera vez. Por un tiempo, el Sol comenzó a brillar de nuevo. Su pelo creció de vuelta, su energía regresó y finalmente fue capaz de juegar hasta fútbol denuevo con sus primos, hermano y amigos.  
Through God's Grace, Jose beat his cancer that first round.  He still had to have scans every six months, but the crushing uncertainty lifted, and for a while the sun began to shine again. His hair came back, and he got regained his energy, finally able to play soccer with his cousin and brother.  Through it all, Jose always kept his sense of humor. Through his treatments, he spent a fair amount of times in the office with Lupe and I.  He loves to help, and he enjoys making people laugh.  Never one to dwell on the negatives, Jose has been a fighter from the get-go.   

A Devastating Blow 
This April, after routine scan, Lupe got the call that we hoped would never come.  Jose's cancer was back.  Neuroblastoma is prone to recurrence, but it was a complication that we had hoped to avoid.  The statistics for recurrent neuroblastoma are even more sobering.  It kicked off a desperate scramble to get him the help he needs.  The first choice was Memorial Sloan-Kettering in New York.  They are pioneers in the study and treatment of neuroblastoma. Sadly, MSK won't accept the Medicaid that has funded Jose's treatment.  We also tried MD Anderson in San Diego, but they too, wouldn't accept the insurance.  That left Seattle Children's Hospital.  Neuroblastoma is rare, and there are only a few treatments available outside of the clinical trials at MD Anderson and MSK.  We have exhausted the last of the treatments currently open to us. 

En Abril, la familia de José tubieron que acompanar  a Jose para estudios de rutina ,despues lo que no esperaban  llego. El cáncer le ha vuelto.  Esta vez es peor aun. Las estadísticas de neuroblastoma recurrente son sombríos. Hay algunos hospitales que se especializan en el tratamiento de este tipo de cáncer, pero el seguro se ha negado a pagar. Porque neuroblastoma es raro hay algunos tratamientos disponibles fuera de los hospitales en New York y San Diego. Los tratamientos más prometedores estan en Memorial Sloan Kettering en New York.   
The end of hope? 
Last Wednesday, Jose's doctors called to say that the most recent scans show the treatments are ineffective.  There is nothing left to try.  I guess we should have seen it coming, yet somehow, these things come out of left field.  After a few days of processing, Lupe decided to try some more.  We are talking again to the hospitals that turned us down before. There may not be much hope, but as long as there is life, there is hope. Jose's case is no more in Gods’ hands now, than it ever was.  We chose to put one foot in front of the other, and keep trusting in Him and keep moving forward.   

En julio, los médicos del hospital de Portland de dijo a Lupe que no hay mas tratamientos en su hospital para curar a José.  Tenemos la Fe en Dios para sanar José. Todo en manos de Dios. Ahora más que nunca. Vamos a mantener la lucha y oraciónes. 

What about Make-A-Wish? 
What about the Make-a-Wish foundation? After Joses’ first battle with cancer, he used his one wish from the Make-a-Wish. Somewhere in the midst of all of this, Jose made a pact with his cousins that none of them will go to Disneyland without the others.  Now, when happiness is so scarce, we could really use some help to get all 19 kids to Disneyland, but we already used our "Wish", never believing this day would come.  

Se puede preguntar ¿qué pasó con Make-A-Wish foundation? Después de que José bencio el cancer por primeravez, José  utilizo su deseo en ese tiempo Jose obto por un set de columpios  para disfrutar con sus hermanos. Quería que su deseo fuera el beneficio acia los demás.  Este es el niño generoso que José es.  Que también es porqué estamos pidiendo que usted pueda ayudarnos y a los niño en especial.  No tenemos de cómo agradecer de su generocidad.  

Help can come from you 
That's where you come in.  I want to help get Jose to the Magic Kingdom with his cousins and have as many carefree days as he can.   There is also a small chance that one of the other hospitals have a treatment that hasn't yet been tried. Looming in the back of our minds, is also the revolting possibility of final expenses.  His parents have used all their savings and nearly all of their credit just getting Jose to his treatments to get him healthy. If you feel moved, your contributions could really make a difference for this family. The doctors are guessing just a few months left for this sweet boy, who's not quite 9 yet.  Of course, we have no idea how many of those are going to be "good" days, so please don't wait. 

En algún lugar en medio de esto, José hizo un pacto con sus primos que ninguno iría a Disneyland sin todos ellos.  El costo para traer 19 niños y 8 adultos a Disneyland es muy alta.  Sinenbargo como negarle a José tener la dicha de esta experiencia y sueno maravilloso, despues de todo lo que a vivido y soportado a tan temprana edad , es correcto que hagamos este sueño  realidad. Por favor, ayudanos a conseguir  esto para José y sus primos. Mientras que su salud le permite disfrutar de las misma.  Sus padres han utilizádo todos su dinero en efectivo y crédito para continuar llevando a José a sus tratamientos en esta segunda etapa.  Porfavor, comparta esta campaña para que juntos logromos este objetivo de llevar a Jose junto a su familia a conoser Disneyland por primeravez. Gracias por su donación.Y recuerde que unidos hace la diferencia. Que Dios los Bendiga hoy y siempre. 

                                                                                              Time is precious.
                                                                                         El tiempo es preciado


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Dena Crane 
Salem, OR
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