Yasica’s Bout
A Painful Process …
Yasica’s Bout
It was in October 2020, the mystery behind Yasica’s unexplained weeks-long fever, persistent nausea, loss of appetite, and prolonged sleep was unveiled! Our baby had a Tumor in her head! A malignant beast – Atypical Teratoid Rhabdoid Tumor (ATRT).
Unfamiliar with this pediatric brain cancer, and an optionless emergency brain surgery, we were frozen for life. Eventually delved into the research and discovered its grip on young children, particularly between the ages of 3 and 5. Tragically, it had targeted the brain of our beloved Chitti.
Caught in a state of bewilderment, we navigated through days of consultations with doctors from every corner, each day bringing us closer to the painful reality that ATRT offered no clear treatment path.
Caught in a state of bewilderment, we navigated through days of consultations with doctors from every corner, each day bringing us closer to the painful reality that ATRT offered no clear treatment path.
Yasica’s Story
October 2020: And it Started…
During the month of October, a series of MRI scans became an integral part of Yasica’s fight against ATRT at Kaiser Permanente Hospital, Oakland, CA. These scans aimed to pinpoint the grade of the ATRT she battled, helping the doctors identify the tumor, its location in her brain and assess the extent of its spread. This critical information was vital in determining whether surgery could potentially render Yasica cancer-free.
The enormity of ATRT within Yasica’s brain measured a staggering 4 inches. Though significant and confined to her brain, thankfully, it didn’t spread to the spinal cord or anywhere else. Faced with the aggressive growth rate of ATRT, we had to make the difficult, yet necessary decision to proceed with surgery in the hope of freeing Yasica from this relentless adversary.
October 6, 2020: First Surgical Intervention
With unwavering courage, young Yasica underwent 2 hours of surgery, a significant step forward in her battle. The tumor was successfully removed, and she spent several days in the ICU before gradually returning to normal life. Despite losing part of her hair, Yasica greeted us with a radiant smile, devoid of complaints. Her resilient spirit became our source of strength, fueling our determination to confront the challenges that lay ahead.
Doctors emphasized that while the tumor had been excised, preventing a relapse, required the complete elimination of cancer cells. The next crucial step in this arduous journey was the treatment which was a combination of both radiation and chemotherapy.
November 9, 2020: Second Surgery
She was still healing from the first surgery, but in November 9, 2020, another brain surgery took place at LeBonheur Children’s Hospital, Memphis,TN. The intend was to clean up a few spots/new growths before the start of Proton Radiation followed by Chemotherapy.
November 2020 - January 2021: Proton Radiation Therapy
Our daughter underwent high dose sessions of proton radiation – 13 for brain and spine, while 17 only for brain.
In the realm of radiation therapy, the affected area of Yasica’s body, infiltrated by ATRT, underwent treatment through high-energy X-rays. The primary goal was to inflict damage or reduce the size of the tumor. Given Yasica’s age, exceeding three years, the doctor recommended this approach. Despite the emotionally draining nature of the process, we made the decision to forge ahead with this therapy, driven by our fervent desire to ensure Yasica continued to be a part of our lives indefinitely.
While the medical fraternity deems radiation therapy a standard treatment for ATRT in children aged 3 and above, it is challenging to articulate the brutality of this procedure in mere words. Our cherished Yasica endured this formidable journey, standing resilient against the harsh realities of radiation therapy.
In the end, as a side effect, our Rapunzel lost all her beautiful hair, but not her smile and attitude to proudly say that she is still a princess and her Dad loved her, more than Mom!
Also, the tumor growth was around her pituitary gland. She was diagnosed with Diabetic Insipidus.
According to the treatment protocol, our daughter had to be on maintenance chemo for 6 cycles. It was easy for her, to be outpatient and with family. Finally!!
February 2021 - August 2021: 6 Cycles of Chemotherapy
Chemotherapy involves the infusion of medicine into the bloodstream, ensuring it reaches every corner of the body. This rigorous process is known for its severe side effects, and Yasica, at her tender age, faced these challenges with the spirit of a true warrior.
One cycle of chemotherapy lasted for 4 weeks. And with the end of 3 cycles there was an MRI done for better understanding of the tumor growth. The first 3 cycles went smoothly, but at the end of the 4th cycle, the CSF fluid in her brain wasn’t draining well. So, she had to go through a 3rd brain surgery for the placement of a programmable VP shunt.
August 2021 - February 2022: Maintenance Chemo for Malignant ATRT
According to the treatment protocol, our daughter had to be on maintenance chemo for 6 cycles. It was easy for her, to be outpatient and with family. Finally!!
February 2022:
Finally Sweet Home…
We were grateful for each and every one who ever teamed up with St.Jude’s Hospital to take care for our princess. We will be grateful for Life! Our baby was on cloud9 to be back home. It was her return to Home! Sweet Home!!
May 2022: It Returned...
It was a heartbreaking relapse of the tumor after all the collaborative efforts.
UCSF SFO Intervened
Upon the doctor’s advice a low dose of mild radiation was repeated, but the sad part was its side effect. Yasica’s vision blacked out in both the eyes on her left side. She could see only what was straight.
Seattle’s Car-T Cell Therapy
With a relapsed tumor, our baby was eligible to get into the trials for Seattle’s Car-T cell therapy. Yasica’s own T-cells were reprogrammed to recognize and target the protein.
With 6 infusions, successfully we completed the trial.
Relapse Again
The tumor relapsed this time as well. And this time, it took a turn for the worse. With a major seizure which lasted for 5 minutes, our baby spent an entire month in ICU on bed without a movement. That is when we decided that it’s high time we choose quality of life for her happiness, which she was pleading on the ICU bed for days. Seeing her happy was more than anything for all of us. The fun in our lives returned though short-lived! Yet, we were living life, making memories and fun was the only thing filling our days.
Homeward Bound
Having weathered the storm, ATRT clung stubbornly to Yasica, and the sight of her tethered to needles became too much to bear. In the past three years, she spent mere fragments of time at home – only 2-3 months. Ultimately, we made our way to India, fueled by an unwavering determination to encapsulate every ephemeral memory. Although Yasica is no longer physically present, her enduring legacy thrives within us.
Yasica has become an angel now, but our commitment to aiding others in their battle against ATRT remains steadfast. Amid our experiences within and outside hospital walls, we have keenly sensed the shared empathy within the medical community for the suffering of young children and the anguish of their parents. Yet, an unmistakable feeling of helplessness lingers. They tirelessly seek a tangible solution, but for now, their hands remain empty.
If you’re moved to contribute to providing young children, the opportunity to embrace life to the fullest in future, take a decisive step forward today in supporting researchers and doctors on their quest for a life-changing treatment to ATRT.
