Little Moments, Lasting Stories - Sa'Mari

Posted: Feb 23, 2024

Over the years, Casey Cares has had the privilege of touching the lives of thousands of critically ill kids thanks to your support. That includes children who have now graduated to the title of "alumni patient" of our programs. While some leave our programs when they turn 18, others depart when they no longer meet the criteria of being diagnosed with a critical illness, experiencing frequent hospitalizations, receiving active treatment, or being on hospice care. Each alumni patient's journey is a testament to their resilience, the support they have received, and the lasting impact that Casey Cares has had on their lives. Read our first ever "Little Moments, Lasting Stories" alumni feature with Sa'Mari! Sa'Mari is no longer actively receiving treatment and she is no longer frequently hospitalized!

Sa'Mari Strong

After becoming Sa'Mari's mother, Samia remembers, "thinking that I was blessed to have such a good baby. From the time Sa’Mari was born, she slept through the night and rarely ever cried. She was a very content baby girl."

However, Samia first noticed something unusual with her daughter's pupil. 

"I first suspected something was going on when Sa’Mari was about two months old. I’d notice a white spot in her left pupil when I would take pictures of her with flash and sometimes even without flash, I would see it," Samia states.

She continues, "Sa'Mari was diagnosed with bilateral retinoblastoma when she was four months old. Her original pediatrician referred us to a children’s eye doctor at Kids Eye Care of Maryland. From there the eye doctor then referred us to a specialist in Philadelphia at Wills Eye Hospital who confirmed her diagnosis. They advised us to start chemotherapy right away and that was what we did."

"Even after our family learned of her diagnosis, I noticed that she was still always very happy and in good spirits all while going through treatment. She almost never had bad or sad days from what we all could see, and I was so grateful for that," Samia notes.

After Sa'Mari's retinoblastoma diagnosis, which is rare form of cancer that rapidly develops in the retina (the very back part of the eye), "her day-to-day care wasn’t very different from the average child. In fact, it may have been easier because of how easy going and calm she always was. As a baby the only time she’d really cry, or fuss was when she’d have to get labs or needles."

Samia adds, "Throughout the years of her treatment, she was always positive aside from that which made caring for her fairly easy. I would say it has changed because she is older and more curious of things like why she looks different than other children and explaining that to her would likely be the hardest part of caring for her."

Finding Support With Casey Cares

As her young daughter went through numerous therapies and treatments, Samia "learned about Casey Cares through my late aunt Sharina, who’s son, Uriyah is a part of Casey Cares."

Having joined Casey Cares when she was two, Sa’Mari loved going to the Orioles baseball games, shows like Disney on Ice, and Ringling Circus.

"Our favorite activities were anything we could do together as a family. There was nothing we didn’t enjoy!" Samia says.

Reflecting on her family's time with Casey Cares, Samia "loved that Casey Cares takes care of the whole family and makes sure to include everyone. Sa’Mari has been able to experience so much with her sisters and our family that I’m not sure we would’ve been able to do without Casey Cares."

After Sa'Mari was diagnosed with cancer, Samia faced new challenges as well. "Being as though Sa’Mari’s treatment was so frequent, I couldn’t fully commit to a job until she completed treatment. Every time we’d think we were in the clear the tumor would return and we would have to start treatment again," she states.

But, Samia credits her village for helping Sa'Mari, and herself, stay strong. "I can say that I have a great village behind us. We have received so much support over the years from numerous people including Casey Cares and other organizations. We have gotten a lot of support from our families, some of them even taking the time to come and stay with us for the week that she would receive treatment. We wouldn’t have made it this far without our village!"

She also notes that "my advice to any family with a medically complex child would be to just take everything one day at a time. While your child is most important, make sure to still take care of yourself and remember that you can’t pour from an empty glass so make your mental health and well being a priority as well as theirs."

2023 marked Sa’Mari’s first full year in her life that was completely cancer free! The family celebrated her end of treatment with 5 day trip to Disney World for her 3rd birthday. "It was so fun and memorable for our whole family," Samia says.

An Alumni

After years of endless treatments and surgeries, Sa'Mari's care going forward has changed.

Her mother explains, "Sa’Mari is able to live a normal life. Since ending treatment she’s enrolled in daycare, made tons of new friends, and been able to just relax without all of the stress of frequent hospital visits. We still have a little ways to go before she’s completely in the clear but we’re grateful for every moment we have together no matter what it is."

She adds, "It’s a bittersweet feeling becoming an alumni of Casey Cares because we’ve been able to make so many memories as a family with the program. It’s brought us together in many ways. I’m glad that with Sa’Mari becoming an alumni, another child will be able to become apart of the program and be able to create the memories as well just like she did."

Samia concludes, "Sa’Mari has formed a strong bond with just about every person she’s ever met. Her spirit is truly something I’ve never witnessed until I had her. She is one of the sweetest little souls I’ve ever met. She’s nothing short of one of a kind."

Your support helped bring dozens of fun activities for Sa'Mari when she was a patient in our programs! Help more kids like her here!