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When the doctors discovered a mass in Penelope’s stomach, her mother Nazia presumed it was just some toy she swallowed.
“I thought that has to be play-doh or she swallowed a remote,” said Nazia. “You wouldn’t ever think it’s a tumor.”
It turned out to be just that though, a tumor. Soon, doctors diagnosed the independent 2 ½-year-old Penelope with rhabdomyosarcoma.
She faced an uphill battle, starting when her initial treatment plan at Cohen’s Children Hospital in Long Island, NY went awry.
“The chemotherapy was actually making her tumor bigger, so here is this 2 ½-year-old who looks pregnant because there’s a 2.5 pound tumor growing on top of her bladder,” said Nazia. “After two to three weeks, I’m freaking out because I wondered if the chemo was working.”
The expansion from the chemo was causing Penelope’s kidneys to become inflamed, and the doctors sought out an alternative approach. They recommended a surgery, although one that came with a degree of uncertainty.
“The surgeon said, ‘I may get it all in one shot, I may get it piece-by-piece or I may just leave it in there if it’s wrapped around something else,” said Nazia.
The doctors went into the procedure unsure of what to expect which didn’t help Penelope’s parents’ fears. When a doctor emerged after 2 hours of a planned 6-hour surgery, they braced themselves.
“My heart dropped to the floor because I’m thinking things didn’t go as planned,” said Nazia. “And then they said, ‘We got it out,’ and I dropped to the floor. They got it out in one shot and it was completely dead.”
The successful procedure was more than Penelope’s parents could’ve asked for after a week that started with a PET scan showing no cancer activity.
“It was the best week of my life,” said Nazia.
Penelope’s ongoing treatment schedule includes a 21-day period of targeted radiation and chemotherapy treatment which is scheduled to finish in April 2018.
Penelope continues to amaze others with her independent attitude, even comforting her parents at points. She may not be able to talk yet, but she still nuzzles with her mom in the hospital room.
“My head is on her chest, she’s holding my face and we go to sleep together,” said Nazia. “She’s consoling me, that’s how strong she is. My whole family calls her Penelope Warrior Princess.”
Her family believes that better treatments and cures start with more government funding, which is why organizations like ALSF that raise awareness are so important to them. Without the Foundation’s Travel for Care program too, their family would’ve had trouble paying for travel expenses so that Penelope could receive lifesaving treatment at several different hospitals.
Nazia is appreciative that they’ve had so much support from their family and friends, but also tries to keep things in perspective knowing there are other mom’s she has met with children in more difficult situations. That same empathy is present in Penelope, even at such a young age.
“Penelope is the most resilient little person you’ll ever meet,” said Nazia.
With strength like that, it’s no wonder they call her Warrior Princess.
I will go to my own Sun.
And if I am burned by its fire,
I will fly on scorched wings.
Poem by Segovia Amil
Information provided by Nazia Ahmed, Penelope’s mother
Updated October 2017
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