Type of Sarcoma: Embryonal Rhabdomyosarcoma
Date of Diagnosis: September 2023
Location: Abdomen
Jeremiah’s Story
(Written by Mom)
On July 25, 2023 Jeremiah had intermittent stomach pain and I brought him to the ER. His X-ray showed a large amount of stool, the ultrasound showed a mass in abdomen. He was diagnosed with constipation and sent home. I made several follow up appointments for weeks because he was not getting better and the diagnosis remained the same.
On September 3, 2023 Jeremiah was finally admitted. Another ultrasound confirmed the mass in his abdomen and a MRI supported a malignant tumor. We went from a diagnosis of constipation to suddenly facing cancer. Six days after being admitted Jeremiah was intubated, both of his lungs had collapsed. The tumor was putting pressure on all of his organs. September 11, 2023 a biopsy confirmed Embryonal Rhabdomyosarcoma, PET scan was clear. He received 2 rounds of chemotherapy.
On September 25, 2023 Jeremiah was transferred to Stanford children’s hospital in critical condition. His kidneys were failing and he was placed on continuous renal replacement therapy (CRRT). He began radiation right away, total of 10 sessions. He was not well enough for chemotherapy because of his kidney and liver disfunction and the tumor was too large to be resected safely. Over the next few weeks the tumor began to swell (from radiation) which put an even bigger burden on his organs in which he developed abdominal compartment syndrome. Jeremiahs liver started failing and he was not expected to make it. We were faced with the decision to either spend whatever time we had left with him or send him to OR for a high risk exploratory surgery (decompressive laparotomy) which “could” give him a chance to live.
On October 27, 2023 Jeremiah went in to the OR with slim chances of survival in hopes to relieve pressure from his abdomen and save him from organ failure, the surgery was a success! A true miracle we all witnessed. His abdomen remained open with a wound vac in place until we could figure out the next steps to kill the tumor.
November 2023 Jeremiah started microwave ablation treatments to fry the tumor at high temperatures, total of 4 treatments. By December 2023 the large tumor was dead but the cancer spread to multiple different areas and there was no path forward to cure the cancer. We were seeking second opinions.
On February 5, 2024 Jeremiah was successfully extubated, after 5 months of being intubated (which is unheard of) another true miracle we all witnessed. On February 6, 2024 Jeremiah went into cardiac arrest from a hemorrhage in his abdomen. Heroic measures were made to try and save Jeremiah but the bleed could not be managed. On the morning of February 7, 2024 Jeremiah passed away peacefully with his dad and I at bedside. He was only 4 years old and had his entire life ahead of him. Jeremiah was extremely loved and a light to many. My son went through absolute hell in such a short period of time and he survived beyond any time limits that were set on him from the beginning. He spent 158 days fighting for his life, 153 of those days in PICU. A part of me will always wonder if he would still be here had he been diagnosed back in July 2023. We are heartbroken and missing him dearly.
