Beads, Braids and a Battle
Written by Marissa Jacobs, MA, MSW, FFT
“I was giving Aryn a bath and running my fingers down the bones in her spine. I had felt uneasy for some time about her reduction in weight and it was not getting any better.
I didn't care what the professionals were saying, I knew, this was not normal.
On Thursday, May 21, 2015, I was talking to Aryn and she was looking at me, but her eyes weren’t focused on me. It was slight, but I called our neighborhood pediatric ophthalmologist for an appointment.
Initially, the receptionist said, “We are fully booked for the next few weeks.” After describing what was going on at home and sensing the desperation in my voice, she said, and I’ll never forget, “I believe moms who are at home with their babies. You guys see everything first, so I believe you. I’m going to squeeze you in.”
That afternoon, we arrived at the office for our appointment. Still unable to see what was happening, the doctor dilated her eyes for a closer look.
After performing the retina scope, the doctor informed us that the blood vessels in her eyes were hemorrhaging. We were instructed to go straight to the emergency room.
I was petrified with so many thoughts running through my mind. I hoped for the best while trying to block out thoughts of the worst.
At the hospital, we were told she needed a CT scan and then kept overnight for observation. During the next morning and day, the nurse was trying to take Aryn’s blood pressure and for some strange reason, she kept repeating that I needed to keep her still, that she couldn’t get a good read.
As she took her vitals, she was frustrated and shaking her head. After the CT scan, she came back to try again. She insisted that her machine was broken, so she came back with another. When she went to get a third machine, this time we knew that something was wrong because she came back with the unit’s Attending Physician.
Aryn’s blood pressure was extremely high and they rushed her to the PICU. There she was started on IV antihypertensive medications. The next morning, a line of specialists stood outside of her room waiting to begin a battery of tests.
The end result came after a sonogram. They found a mass wrapped around her left kidney.
The doctors said to me, “We don’t know what you saw or how you knew to bring her to an ophthalmologist, but this mass was squeezing her kidney, which was squeezing an artery, which caused a backup up fluid that naturally drains from the eyes, which maybe explains why her eyes ‘looked’ weird. The blood vessels in Aryn’s eye were hemorrhaging, which possibly explains the shift in her vision. However, had you not brought her in when you did, she could have possibly had a stroke and died. You would have found all of this out via autopsy.”
After a few weeks of trying to stabilize her blood pressure, doctors performed a biopsy which later identified the mass was cancerous. Neuroblastoma.
With staging to commence, we transferred to New York Presbyterian Morgan Stanley Children’s Hospital to the care of Dr. Alice Lee. Aryn’s port was placed and she began chemotherapy. During the summer of 2015, Aryn received four rounds of chemotherapy. In August 2015, the tumor reduced in size, so the decision was to stop chemotherapy and finish treatment with tumor resection surgery.
On September 11, 2015. Dr. William Middlesworth and a team of brilliant doctors successfully resected the tumor.
The following year, Make-A-Wish granted Aryn’s wish to go to Walt Disney World® Resort.
Our family stayed at Give the Kids the World. It was a trip of a lifetime. Aryn and our family had so much fun! We went to all the parks and enjoyed the wonderful hospitality by the GKTW team.
To me, the most beautiful part of the trip was the Give Kids The World star room - a room filled with stars for each wish kid who has visited the resort. The entire room is covered in stars. It’s moving. It’s humbling. It’s incredibly reflective. Here you are enjoying a “trip of a lifetime,” only to realize that this was some children’s final wish. It makes you grateful. I will never forget it.
It makes you realize that there are so many children who have been affected by life-threatening illnesses and whose families have been on a journey for some time. A respect and honor for those who have come before you. Child and family warriors who have fought bravely and still do.
Today, Aryn is six years and two months cancer free. She’s shining, growing and eating me out of house and home!
Through it all, Aryn was always positive and courageous. She would often be found in the IP7 Outpatient Oncology clinic singing Bruno Mars’ “Uptown Funk” and donning cute headbands. She’s an old soul. Even before the cancer, she was very intuitive.
Coming full circle to a place of perspective, we went through the journey and it taught us about the power of unity and affirmation. Speaking positive, thinking positive, and using your story and/or experience to advocate and/or help others.
We taught Aryn from the very beginning of treatment, to be proud, to face the unknown unafraid, and to never be ashamed of her story or feel embarrassed. All of our stories in life are as unique as our thumbprint.
When Aryn lost her hair, it was no different.
One day I remember combing her hair and it was coming out in my hands. While I'm trying to hold myself together from the shock of what was happening, she noticed the hair coming out and asked me if it was hers. Not wanting to lie, I said to her, “Yes, it is, some of it is just coming out…you’re beautiful with the hair and you're beautiful without it.”
After the Make-A-Wish trip, Aryn and I were looking at pictures and talking about what she had been through. “Mommy, I look so pretty,” she said.
Nothing could speak to what it is exactly that we were going through with the hair loss. We searched for books that were representative of a pediatric African American cancer patient who had lost their hair. We couldn’t find one. When Aryn and I talked about what she missed the most after her hair fell out, she said it was her beads and braids.
And so, we came up with The Beads and Braids Book.
Beads and braids are not just hair for a little Black girl. They mean something different. A young African American girl getting her first hairstyle with beads and braids is almost a rite of passage.
Surprisingly, in what I call the "major editorial flaw of the century,” the book never talks about cancer. It ended up being a blessing, because pediatric oncology is not the only disease that children receive chemotherapy for or the only disease that causes a child to lose their hair. So, the book works perfectly for any child who needed to see themselves in the main character. It’s a book for moms, a book for siblings, and a book for children, of course.
We tell everybody about the book. Aryn’s little brother Aden, is her marketing manager. It was a special labor of love.
Our story could have been a very different one if that receptionist had not believed in me. It’s why I'm in the line of work that I do now - advocacy for children and parents. Because you don't know what a parent sees, what a child is feeling, and what a difference it can make for informed patient care.
Today Marissa sits on a series of boards, councils, and committees to drive change for families like hers including The Family Advisory Council at New York Presbyterian/Morgan Stanley Children’s Hospital and Patient Experience Collaboration: Race and Ethnicity Workgroup for a network of hospitals.
She is also a family therapist certified in Functional Family Therapy. Helping to reframe behavior, reduce blame and negativity, while increasing positive communication. Beyond that, she’s a Youth Life Coach with a focus on mentorship, mindfulness, and self-care through her “I Am” declarations and affirmations.
"What I love to do is add value. We can all sit in meetings, but if we're not talking about how we can positively affect change for whatever population we're working with, then what are we doing?” says Marissa.
Despite only having so many hours in a day, Marissa recently accepted a position on our own Mission Delivery Committee to help build a bright future for wish kids like Aryn.