Working hard to provide for his family is something Bilal does every day. When his 3-year old daughter, Bushra, was diagnosed with retinoblastoma (eye cancer) last fall, he had to work even harder because they needed to fly over 850 miles to get her to cancer treatment.
It is not cheap to fly from Wisconsin to New York on short notice. But somehow they managed. That time.
“I’m a contractor. I work hard. We paid for the first set of airline tickets in October out of our pockets. But then I was off work because of this,” Bilal explained. They just couldn’t afford to take Bushra all the way to New York for treatment again. That’s when the hospital social worker contacted Compass to Care, who offered to help the family with travel expenses.
“I don’t know how to express my feelings. Believe me, from my heart and my family and my little girl, we appreciate it. Everyone who donates and works for this foundation is the best. What seems like a little work from you, means a lot to us,” Bilal said.
A lot of things about this experience have touched Bilal, not just the generosity of Compass to Care. This has been a journey of emotion for their entire family since Bushra was diagnosed this past September.
Over the summer, her mom noticed something shiny in Bushra’s left eye. She just knew there was something wrong, but wasn’t sure what it could be. No one in their extended family had every had retinoblastoma, which can sometimes be genetic, so they didn’t recognize the signs. Bilal said they had never even heard of it.
“I dropped to my knees on the floor in the clinic when they told us. The doctor held me. My wife didn’t understand what was happening – she doesn’t speak English – she kept asking ‘What’s going on?’” Bilal remembered. “When we told everyone, my brother, dad, mom, friends, they were all in shock.”
Doctors determined that the cancer had caused blindness in Bushra’s left eye, and she needed immediate treatment.
They were referred to Memorial Sloan Kettering Cancer Center in New York for a specialized chemotherapy called intra-arterial chemotherapy. This type of chemotherapy is administered directly into the artery of her eye with the hope of saving the patient’s sight. Bushra received two weeks of this chemo in October. The doctors hoped her sight would stay the same, but there was an outside chance it could improve.
When they went back for the next treatment in November, they were surprised to learn she had regained 20% of her sight in the affected left eye. However, doctors also discovered a white dot in her right eye, similar to what mom had noticed in the left eye last summer. But, when Bushra returned for treatment in January, the doctors could find nothing in her right eye. The treatments were working.
“The doctors say she will stay the same, or maybe get better. We pray to God that she gets better and now she’s at 20 percent sight!” Bilal said.
When the family of four is in New York, Bilal isn’t working. When they are home, he works as much as he can. He doesn’t have vacation time to use. They have already made three trips with more on the way. Once Compass to Care joined their journey, they were able to concentrate on Bushra and getting her the care she needed.
“We appreciate your help so much. This is from my heart. You are all equal in my eyes. God Bless you all. Thanks, God, for everything,” Bilal shared.
Making it through
The first three months were really hard on little Bushra. It was almost more than she could take.
For each dose of chemo, she needs to be under anesthesia for three hours. Doctors run a catheter up her leg to her heart and then finally to her eye to administer the chemo. It often takes five hours in ICU for her to wake up. Bilal said it is hard on the entire family, too.
“We looked like we all were sick. During these times we can’t eat, we can’t sleep, we can’t think. We just wait,” he explained. But somehow they make it through each time.