Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on April 4, 2024 in Glioblastoma, Stories
Shortly before turning 15, Sarah H. woke up abruptly when her mother, Rukhsana, rushed into her room with her baby sister and said, “Take your sister, and don’t come outside your room.” Sarah looked outside her window to see an ambulance with its flashing lights. She stepped into their hallway, where she watched paramedics coming upstairs.
“I saw my father, and he wasn’t responsive [from a seizure], so my heart dropped,” Sarah explained. “I was scared out of my mind, but I didn’t ask questions because I didn’t want to stress my mom out more than she was.”
Sarah comforted her three siblings — ages 9, 7, and 1 — after her parents left for the hospital while they waited for her aunt to arrive. Little did she know how much their lives would change in the following two years.
“She really had to grow up quicker than a normal 15-year-old at the time,” Rukhsana said. “I think she was just in shock mode. We were not able to really talk about what was going on because everything was happening so fast.”
Sarah’s dad, Asgher, underwent an MRI following his seizure in December 2020.
“There was no indication of any malignancy,” Rukhsana explained. “I look at the report often, actually, to see if we missed anything. There was a speck on the MRI, but the doctors found it inconclusive and told us that lack of sleep and stress were the triggers of his seizure.”
Asgher went home with anti-seizure medication and instructions to return for a follow-up MRI in two months. Sarah’s family went back to their routine, with her dad just shortening his workday by a few hours until he began experiencing headaches and some personality changes in mid-February 2021.
“My father, who was living with us at the time, passed away on February 21, 2021,” Rukhsana said. “On February 22, 2021, my husband called me from work and said that his left side was feeling numb. The first thing that came to my mind was a stroke. I told him to hang up and call 911 right away, and I was going to meet him at the hospital.”
A CT scan at the hospital detected a tumor, and the follow-up MRI showed a golf ball-sized tumor on his right frontal lobe.
“He was discharged from the hospital that located the tumor,” Rukhsana said. “We were told to do the surgery at another hospital with a neurosurgeon that our neurologist was more comfortable with.”
Pathology later confirmed it was glioblastoma.
“When we learned about the type of GBM that he had (unmethylated), the doctor said it was the worst of the worst, and there was really no treatment that was going to help him,” Rukhsana shared. “I think the severity of the type of glioblastoma that my husband had was something that we were not at all prepared for. Everything happened so fast.”
Sarah observed immediate changes in her father’s personality following his surgery in March.
“From the day he came home to the end, he was a completely different person,” Sarah explained. “He used to be very calm, but this version of him was very triggered by noises.”
Asgher wanted to be closer to his mother, so the family moved 20 minutes away to honor his wishes.
Sarah shared how that impacted her, “At the time, I was worried about how I’m getting to school. What about the bus? I was stressed at the idea of just getting up and moving. Everyone told me I needed to listen and do this, but it made no sense to me. Now, years later, I get it. It was only 6-8 months, but it was really hard on me.”
Sarah’s mom joined her dad during his many hospital stays, which meant Sarah watched her younger siblings at home after school.
“I would have to figure out food for them,” Sarah said. “Sometimes my mom’s friend dropped off food, or perhaps we had cereal that night. The hardest thing was putting my little sister to sleep because she was at the age where she would wake up, and I would have to stay with her until my mom would get back from the hospital.”
By his birthday in April 2021, Asgher had lost his eyesight. He was in and out of the hospital until he sadly passed away four months after his glioblastoma diagnosis.
“My grandpa died in February, and my dad passed away in June, so it was just one after the other,” Sarah said. “My sister was only two and won’t grow up with our dad. It really sucks.”
Sarah’s sophomore year began two months later. A friend who knew about her dad’s passing told one of her teachers and the student body president, who gave her a card on the first day of school, so she knew they were there for her.
“It really touched my heart because you feel out of place as a teenager and that no one really understands you or the pain you’ve gone through,” Sarah explained. “I still feel like that sometimes when I meet a new person and they say, ‘What does your mom do? What does your dad do?’ I’m uncomfortable explaining it to a stranger, so I’m like, ‘Oh, my dad does this. My mom does this.’ It hurts sometimes.”
Sarah has always struggled with easily getting stressed out, and her father would frequently remind her to enjoy the moments while growing up. She encourages other adolescents grappling with a parent’s cancer diagnosis to treasure the moments.
“Make good memories because that’s all you’re going to have in the end,” Sarah said. “Enjoy the moments, take pictures, and spend time with them because you’ll be grateful for those memories one day.”
Sarah will always treasure her early morning trips to Dunkin Donuts with her dad to grab their favorite coffee and then drive 35 minutes to the beach to watch the sunrise over the ocean. It’s a cherished memory today.
“With my dad not being here, I have a void to fill,” Sarah shared. “As the older sister, I try to guide my siblings and help them with whatever they need. I try to do things for my mom that my dad would do, like getting her flowers, so that she knows I’m there for her.”
Sarah notices the apparent differences between her and her friends, who haven’t had to navigate a parent’s cancer diagnosis and later the loss of their parent.
“It’s been tough as a teenager because it’s forced me to mature very early,” Sarah said. “The people I’m around in high school just feel so immature. I can’t wrap my head around the fact that people cry over spilled milk when my whole life has been turned upside down, and I’m still here somehow.”
Life has never been the same since her father’s diagnosis.
“We used to travel a lot, and we still travel,” Sarah said. “We went to a place that we had gone to with him. After that trip, we didn’t want to go back there again because it didn’t feel right without him. It’s true with everything else, too. I go to Dunkin Donuts, and it’s not the same.”
Sarah will graduate from high school on May 23 and plans to pursue nursing.
“I’m coming to an age where I’m experiencing a lot of milestones, including graduating from high school this year, and he’s not here, so it’s very hard,” Sarah shared. “I have been interested in the medical field prior to my dad’s passing, but everything that has happened has driven me toward it even more. I just would like to give back and help people in some way.”
Participating in a grief support group can provide comfort and show you that you’re not alone. Attend an upcoming virtual Grief Support Conversations, facilitated by Holly Gainsboro, and join other bereaved members of the brain tumor community.
TAGGED WITH: brain cancer, GBM, glioblastoma, grief support