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Jerylle's Fight Against Cancer


MY STORY

Hello, my name is Jerylle Saquibal.  I will be 4 years old as of December 21, 2014.   On July 30, 2014 I was diagnosed with STAGE 4 NEUROBLASTOMA, a rare form of childhood cancer.  

It all began in the beginning of January 2014.  I would have random pains in both of my legs;  the pain would come on for a couple hours during the day, disappear for a few days and then return.  My parents had me see a doctor and he suggested that it could possibly be "growing pains".  However, the pain would always come back and the only thing that made me feel better was my mom massaging it until it went away.
 
On June 20, 2014 the pain in my legs became unbearable.  When I woke up that day, there was a lot of pain in my lower body. It was so bad that I could not move my legs without it hurting.  My parents rushed me to the ALBERTA CHILDRENS HOSPITAL ( Calgary, AB. ) Once there, I was admitted for 3 days trying to figure out what was wrong.  They administered morphine round a clock to control the pain, which barely helped and an x-ray, ultra sound, bone scan and blood tests had to be done.  From all the tests, they were able to find fluid had built up in my hip.  The surgeon then had me scheduled for surgery to remove the fluid and sent it for testing.  While we waited for the result, a number of specialists came to see me to figure out what was causing the pain.  They were baffled as nothing was making sense and all the tests kept coming back normal. They finally were able to pinpoint it to JUVENILE ARTHRITIS by process of elimination.  They sent us home with a month supply of antibiotics and Naproxene which I took 3 times a day for a month.  The pain was gone, the fluid was able to be drained and I was a normal 3 year old again.  
 
July 24, 2014 was my last dose of antibiotics and all seemed well.  However, on July 25, 2014 the pain that I had not had during the days I was taking the antibiotics came back with 10x more force and this time it wasn't just in my legs, but all over my body.  I now couldn't move my arms, legs, neck and back.  I was screaming in agony over the pain.  It was tough for my parents to transport me to the hospital as it hurt like crazy whenever anyone touched me or carried me.  If that wasn't bad enough, my parents had to keep me strapped into the car seat if they wanted to move me from the car to the house and vice versa because it hurt too much to touch or carry me. I felt really bad for both my parents as they were in shock with what was happening to me.  I was in so much pain that when the General Pediatrician suspected that it might be cancer,  he ordered more blood tests, x-rays, a MRI and a CT scan. 

On July 30, 2014 it was confirmed that I had STAGE 4 NEUROBLASTOMA.  

On August 2, 2014 I was given a biopsy and on August 3, 2014 my chemo treatment began.  

My life changed pretty quickly from that day on. One day I was a normal 3 year old boy enjoying life, and the next day I began fighting for it.  The doctors told my parents that without chemotherapy treatment, I would only have months to live.

Stage 4 neuroblastoma is a non-curable cancer, with only a  40-50% survival rate.  There is a 50% chance of relapse and when this happens, it only gets harder to treat.

UPDATE as of July 31, 2015

I have completed my 6 rounds of chemotherapy which was really hard on me.  I am now doing my immunotherapy treatment.  My last biopsy was completed July 3, 2015.  It showed that I have less than 1% of cancer cells left in my body with treatment ending in September.  Since completing chemotherapy and doing immunotherapy, I have been able to enjoy life a little more than I had been in the past.  I continue to take it day by day and look forward to see the end of this treatment. I only hope for the best and that is to see 0% cancer cells in my body.  I would like to make it to the trial treatment for my cancer that my parents are excited about trying and this is why I am asking for donations.

 DONATIONS

I am nearing the end of my 15 month treatment. We are praying and hoping that I will be in remission by mid-September 2015.  Because of the high probability of relapse occurring within 5 years after the initial diagnosis, my parents would like me to participate in a clinical trial. This trial is called DFMO PHASE 2.  I qualify for this trial if I reach remission status.(https://clinicaltrials.gov/ct2/show/NCT02395666)

Unfortunately, this trial is only being offered in the US and the Alberta Health Services or group benefits does not cover any costs associated with this trial as it is considered experimental. This trial is very promising (from testimony of other families) and my parents would like to give me a fighting chance of not relapsing, as I fought hard to get to this point.  We are asking for your support financially and spiritually. 

This is a 2 year treatment and we would need to fly to Helen DeVos Children's Hospital every 12 weeks for the first year and every 6 months, the 2nd year. The cost of this treatment is $200,000, which is a big mountain for my parents to climb.  We are asking for support from everyone that are able to help with a small donation.  I just want to have a chance to be a kid again and to be able to grow up and live a life that God has intended for me. This trial is time sensitive and as soon as I am finished with the immunotherapy treatment, I am to fly to Michigan to do the scans and tests and begin the treatment.  

 NEUROBLASTOMA STAGE 4 FACTS:

Neuroblastoma is a non-curable cancer and can only be put into remission state when treatment is successful.

The success rate of beating this cancer is 45%.

25% of the kids with stage 4 NB will not make it through their treatment.

30% make it through their treatment, but relapse within 2 years.

NB accounts for about 7% of all cancers in children.

NB is a cancer of sympathetic nervous system; a nerve network which carries messages from the brain throughout the body.

NB is a malignant tumour that manifests as a lump in the abdomen, around spinal cord, or in neck and pelvis.

NB is a childhood cancer.

Childhood cancer is the leading cause of death by disease in the US.

Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and aids combined.
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Donations 

  • Marcus Tan
    • $30 
    • 5 yrs
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Organizer

Arlene Saquibal
Organizer
Calgary, AB

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