Cancer Stories, Rare Cancers

Fidel’s Cancer Story


 

A rare cancer story, from mother, Erika Shaw, about her beautiful son, Fidel.

Misdiagnosis is a huge problem when it comes to childhood cancer, sometimes the right diagnosis comes too late.  More needs to be done.

 

004 Fidel (3)

Name: Fidel N Gallegos Jr

Age at diagnosis: 6 weeks

Diagnosis: Rhabdoid Tumor Atrt

Additional Info: The cancer after further researched started as Mrt Rhabdoid tumor.  Misdigonised as Duplex filter and Wilms tumor later on. And misdignoised as a bladder infection.

 

At 39 weeks during an advanced ultrasound on my son in the womb something showed up in his kidney. I also had high blood pressure for the first time in my pregnancy. They had misdignoised him as a possible duplex filter in the left kidney and asked the hospital to do an ultrasound on him when he is born.

He was born July 24, 2017 they ran an ultrasound on his kidney on July 25, 2017. They said it was a duplex filter and they noted the cyst but didn’t inform us of it. They never bother to test the cyst to see if it was cancerous. I was able to take Fidel home to his sisters later on that day. At that time we were told to make appointments with a kidney specialist so I had to ring his receptionist every few days for 5 weeks trying to set an appointment up being told I had to wait.

For 6 weeks he had lost weight from 7lbs, 4oz to under 6lbs. The doctor’s assumed at first I wasn’t producing enough breastmilk but he gained a few oz when they told us to come back in few days to see about his weight. Fidel was always smiling and doing baby things. On September 9 I woke up at 3am saw something that was brown assumed it was an odd diaper. Woke back at 6am his diaper was brown again didn’t smell like poop. As I was changing him I witness him peeing blood. I immediately called his doctor office and talked to doctor on call. It was the weekend so they were not open we immediately headed to the ER. While at the ER they ran a bunch of blood work and took a urine sample. We were there for four hours. They dismissed as a urine infection even through all samples were negative. And sent us home with antibiotics.

Our doctor called us September 10 and told us to come in September 11. September 11 we were first one there as she looked over Fidel he was stilling peeing blood. She became very worried and upset about us being sent home and him still showing signs. She tells us we are being submitted into the hospital for evaluation. They run a ultrasound on his kidney in different angles. The doctor comes in informing us of his past ultrasound which was never discussed to us before and his new ultrasound. She says what was a ball is now a crested moon. So next morning they decided they were going to move us to a hospital an hour and half away. We arrive they do another ultrasound early next morning. Our fighter is still a happy joyful baby boy. They come back and tell us they need to remove that kidney asap.  You could feel it sticking out from his side.

So we were moved to ICU on the 13th of September. And on the 14th his kidney was removed and sent to CO to be biopsied. As we wait for the biopsy results he recovers from the kidney removal like a champ and back to his smiling self two days later. We are still waiting for the results for almost a week. We were discussing the chemo treatments so we agreed on another surgery to put port-a-cath in. He goes through that surgery and he wakes up early in surgery goes to grab the oxygen tube out the Anesthesia Dr caught him and was able to fix situation in success. He is sent to do an MRI afterwards.

Then we told the horrible news he has four in the brain, both lungs and pelvis. So they talk to CO and they say it’s Wilms Tumor but the brain tumors don’t add up. We were ready to start chemo and CO tells us not to they do further testing and it’s the worst of the worst. Rhabdoid Tumor they say it started as MRt my last week of pregnancy but because it was not diagnosed it had 6 weeks to being aggressive and rapidly spread to Atrt.

I could not imagine him having something inside him he was is such a happy baby boy. A charmer with his big eyes mohawk hair and beautiful smile. But sadly it was bad news we had option to go to CO for an extreme treatment that they said would not work just put him in extreme pain or sign onto St Jude for a drug they are using for brain tumors. We were interviewed and they supposedly has treated someone like his but they did not survive. Found no reason to turn us away but few days later they did. We couldn’t start chemo if we were waiting for St Jude and sadly a lot of time has passed and it was spread too much our only choice was to go home on Hospice and love him. So we did.

The tumors came fast that we could see they grew within one night. We could see the tumor in both armpits and one grew in his cheek. The doctors couldn’t do anything. This cancer aims to kill and there are no survivors on infants being born with it and progressing as aggressive as it has. I had his doctor calling hospitals all over the place when we were hospitalized. But sadly nothing they could offer except take him home. 6 weeks to not knowing he was sick. 3 ½ being hospitalized and a month and ½ week being home.

He passed away on November first in my arms I wouldn’t want anyone to go through what we did…

Treatment plan:

It had progressed too far before being diagnosed, we were left to go home on Hospice.

 

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2 thoughts on “Fidel’s Cancer Story”

  1. I want to thank you Fidel was my grandson. I just to wish the best with your child. It was hard journey for us and Fidel will be missed. Thank you He was loved by many his smile was unforgettable , those dancing eyes and wild hair. If anytime need someone help you or listen just email if could take daughter pain.i would

    Like

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