About Kyle and his fight against cancer:

Kyle Campo Rabaya is my five year old grand nephew. He lives in the Philippines with his single mother, 12 year old sister, and grandfather.

Ever since Kyle was born, Kyle's grandfather, who is also my own father, cared for him as he cared for me.  Papa is himself a colon cancer survivor who lost my mother years ago. However, Kyle’s birth five years ago gave my father a new lease on life. Kyle is his pride and joy. Kyle gives him love, smiles, comfort, and cheer. He is a good boy by nature. He is also smart and has a caring character.  He has a big interest in cars and can’t wait to drive a real car on his own. He loves to draw, read, write, and play the keyboard and drums. He loves going to school and started Kindergarten last June, 2018. In fact, he was supposed to be his class representative to compete in a reading competition until he was confined to hospital and home.

He was admitted on August 2, 2018 for abdominal distention at Chong Hua Hospital in Cebu, Philippines. Ultrasound of the abdomen showed a complex mass enveloping the left kidney. A CT scan of the whole abdomen confirmed a huge mass on the left side suggestive of neublastoma. Multiple metatastic nodules were discovered in both lungs and on the liver.  Biopsy result showed highly diferentiated small round blue cells.

Final Diagnosis: Neuroblastoma, Left  Adrenal, Stage 4 with Lung Metastases, High Risk  Classification; Prognosis: very poor, survival rate 20 percent.

Neo-adjuvant chemotherapy was started September 2018 using ENSG-5 protocol for a total of eight cycles. Surgical excision of the residual mass was done on November 29, 2018. Radiation therapy was also utilized on January 15 - February 18, 2019.  A PET-CT Scan to check for residual tumor, is currently scheduled on April 12, 2019 in Chong Hua Hospital, Cebu, Philippines. 

Medical science has made amazing progress with childhood cancers such as leukemia and a tumor similar to Kyle's, Wilm's tumor. Some have become highly curable.  But high risk neuroblastoma was in a different category, according to Kyle's doctors. Kyle could be treated with chemotherapy and surgery, but the cancer almost always returns much more aggressively, requiring treatment that would ravage his immune system while failing to cure his cancer. For the first time I heard a new term: "palliative treatment." I asked several times, “What does this mean?” Gradually, it sank in. The doctors would make Kyle as comfortable as they could until the end. That would most likely come in about two years pursuant to treatment available in the Philippines.

I learned that even children in the most rich and developed countries had at best a 50/50 chance of survival with treatment not available or affordable to Kyle. I endlessly searched the internet for something, ANYTHING, that could help Kyle.

Finally, I came across an article about a physician, Dr. Giselle Sholler, in Grand Rapids, Michigan, in the United States.  She was pioneering a totally new treatment. Dr. Sholler was pictured with a little boy who was actually smiling. She had become interested in a drug that had been used for years to fight microbial parasitic infections like African Sleeping Sickness and South American Chagas Disease. Somehow, she had learned a weird fact that no one else knew.  This difluoromethylornithine (D.F.M.O.) stuff she was using not only didn't like nasty little bugs; for some reason it had a particular grudge against cancer.  And not just any cancer. It was neuroblastoma cancer in children that it didn't like one little bit. Dr. Sholler had discovered what D.F.M.O. could do to neuroblastoma! (Link: https://healthbeat.spectrumhealth.org/this-is-going-to-keep-my-cancer-away/ )

Her study results thus far were amazing!  For some categories of high risk neuroblastoma, she was having a 90% plus remission rate which seemed to be holding for two, four and even more years out.

The great news – it looked a lot like a cure might exist after all! The bad news -- Dr. Sholler was engaged only in clinical trials and the treatment was only available in the United States and Canada after you have been accepted.

With the help of my brother-in-law in the U.S., we contacted Dr. Sholler. It turned out she was not just an amazing scientist, she was also a woman of action. Within days of forwarding medical records, Dr. Sholler made the determination that Kyle was eligible for her trial studies.

It all seemed like a dream. Somehow, little Kyle got admitted to the most advanced treatment regimen in the world for neuroblastoma.  It was a two year treatment with two D.F.M.O. pills a day.  The pills even had a reputation for being fairly gentle -- nothing like the rigors of chemo and radiation therapy.

To this day, my family and friends have made every effort to pay for all the costs of the treatment for Kyle in the Philippines and spent already approximately 45,000 USD. With the below mentioned costs that will be incurred for his treatment with DFMO, we can no longer do it alone. So now, we are seeking financial help from relatives and the public through GoFundMe.  We hope and pray that Kyle will find himself in the United States this April or May at the latest. Once in the United States, a two year program will begin where Kyle's treatment will be part of a study that may someday save thousands of children.

Here are the details of the plan treatment for Kyle with D.F.M.O. in the United States:

                                                                     TOTAL COST                                 = approx. 100,000 USD

I read a book years ago as a student in school. It was called Catcher in the Rye, by J.D. Salinger.  I can't remember all of it, but I remember the main character was this person who was feeling down about all the phony false things in life. So he made up a personal daydream he would use to cheer himself up.  He'd imagine himself out near the edge of a big cliff. There was a rye field near the cliff too and a bunch of little kids would be playing In the field. As the little girls and boys played, occasionally one would pop out, running toward the cliff without watching out for the drop-off. And this guy in the book would imagine it was his  job to run and intercept these kids before they could fall off the edge.

Sometimes when I was feeling down, it seemed like Kyle was out there in a field like that, with other little guys and gals, playing too close to a terrible drop off.  

But lately, I'm feeling better. Because now I feel like Dr. Sholler might be out there too.  I'm even thinking that when it's Kyle's turn to come running out, Dr. Sholler might be there to catch him.  She might pick him up and hold him just like she did with that kid in the picture. Then Kyle will have a big happy smile on his face too.

In case you may need additional information or some information regarding this case, feel free to contact me at: 
support-kyle@fight-against-neuroblastoma.com