Malani's Story: Brain Cancer Journey

Hi, my name is Andrea and I would like you to meet my great-niece, Malani. Malani is 2-1/2 years old. Like most toddlers, she is very independent. But unlike most two year old, Malani is facing a battle against cancer. On October 22, 2021, Malani, who is 2-1/2 years old, was headed to an MRI appointment with Mom and Dad. What should have been a routine visit to check her right optic nerve, turned into a parents’ worst fear - a life-threatening diagnosis. The MRI revealed that Malani had Hydrocephalus which caused the optic nerve to swell, and a brain tumor that was the size of an Orange.

 

 

This diagnosis is not the first medical battle Malani has faced. On July 29, 2019, at only 2 months old, Malani was diagnosed with a cataract in her left eye. One day, while taking pictures and videos of her beautiful baby girl to share with family and friends, Malani’s mother noticed that her pupil appeared to be white. She shared the video with family members asking if they noticed the strange appearance of the pupil. Everyone told her she was being a nervous new mom. But she knew something wasn’t right. Mom and Dad decided that what they were seeing was a cause for concern. They took Malani to the ER that very night. After some test, the ER doctors confirmed it was a cataract and referred Malani to an ophthalmologist. After some additional testing, the ophthalmologist determined that surgery was needed to remove the cataract. On September 10, 2019, Malani under-went the first of many procedures she would need in order to save the vision in her left eye.

 

Malani came through the cataract surgery. But more challenges were still ahead for her. During her post-op follow-up appointment with Dr. Greenberg, he discovered she had a retinal detachment. He referred her to a specialist. The specialist, Dr. Rao, confirmed his analysis and informed Malani’s parents that she had a condition called PFV (Persistent Fetal Vasculature) in her left eye. Dr. Rao further explained that while surgery would hopefully help to prevent further detachment of the retina, Malani would always have very poor vision in that eye. On November 7, 2019, Malani had her second eye surgery to stop the detaching of the retina in her left eye. Since then, Malani has had numerous follow-up appointments. She’s had to have her right eye patched to strengthen her left eye. She’s had to become accustomed to receiving daily drops of medicine in her eye. All of this happened before she was even a year old and continues to this day. But through it all, Malani has remained an energetic and happy baby.

 

Fast forward almost two years to September 2, 2021, the day of yet another follow-up appointment with Malani’s ophthalmologist. During this visit, the doctor noticed that her right optic nerve was swollen. This was alarming to Mom & Dad because up until then the concern and focus had always been her left eye. The doctor wanted to get a better look and put an order in for an MRI. Malani’s parents were told that the earliest appointment available for an MRI was early November. The appointment was made, and the wait began.

 

In early October 2021, Malani’s mother noticed that she was walking off-balance. She also noticed that when Malani would grab or reach for something she would shake excessively. Mom & Dad didn’t want to wait until November for the MRI appointment because they felt something was wrong. They tried to reschedule for an earlier appointment and due to a cancellation were able to get an appointment for October 29, 2021. Each day Malani’s parents watched her and noticed that her balance and shaking continued to worsen. It got so bad she could barely feed herself or stand up. On October 14, 2021, Mom & Dad decided they could not wait until October 29th and took Malani to the ER. They needed to know why Malani was walking off-balance and why she was always shaking and trembling when she grabbed or reached for things. Malani was admitted and examined by the neuro team. Dr. Cooper advised Malani’s parents that they needed to do an MRI in order to look at her Cerebellum, which is the area of the brain that controls motor skills. 

 

Malan’s mother informed the doctor that she was scheduled for an MRI on October 29th. However, due to the severity of her condition, the doctor wanted her to have the MRI sooner. The earliest Malani could be seen was October 22, 2021 – which is the day Malani’s parents received the life-changing news that she had a brain tumor located on her Cerebellum. On October 22, 2021, just a few hours after the MRI, Malani was diagnosed with a brain tumor and hydrocephalus. On the same day of the diagnosis, Malani had a procedure to place an EVD(External Ventricular Drain) to remove the excess fluid and relieve the pressure from her brain. Within days of the MRI and EVD procedure, Dr. Boydston scheduled the surgery to remove the tumor that covered Malani’s entire Cerebellum area. On October 27, 2021, Dr. Boydston, with the help of Dr. Chern and their surgical team, performed an IMRI CRANIECTOMY for tumor resection. The tumor was removed and tested. The results of the test revealed more life-threatening news for Malani and the family. The diagnosis of the tumor came back as a malignant (Cancerous) medulloblastoma brain tumor.

 

  On October 29, 2021, the Pathology report came back, and the Oncology team spoke with the family to confirm that the tumor was a malignant Desmoplastic Medulloblastoma. Dr. Agruliera and Dr. Patil advised a treatment plan for Malani that requires six-monthly aggressive cycles of Chemotherapy. Each treatment will be a minimum of 8 days. The treatment will include administering five different drugs. This course of treatment is meant to help eliminate any chance of the tumor coming back. She’ll start the first three cycles of chemotherapy from November 2021 to January 2022. She’ll get a break from the chemo in February. Then in March, she’ll resume the next three cycles of autologous stem cell transplant from March to May. Her last cycle will end on May 27th which is her birthday!

 

On November 3, 2021, the Oncology team meet with Malani’s parents to review some of the procedures Malani would need to have prior to starting chemotherapy. She would require a Lumbar puncture to check for the spread of cancerous cells in her spinal fluid. She would require procedures to place a central line, through which the chemo medicine will be administered and a G-tube (AKA feeding tube). All three procedures were done on November 7, 2021. The central line and G-tube were placed without complications. On November 11, 2021, test results came back negative for malignant cells from the Lumbar puncture! During this time, Malani also had to go through rehab for Physical, Occupational and Speech therapy. During her therapy sessions she had to learn how to walk, talk and interact with others all over again.

 

Malani and her parents, Mariah and Elgin, have faced many health and medical battles with unwavering care, love and support. Malani’s parents have received devastating, traumatic and life changing news regarding the health of their daughter. Mariah has taken leave from working so that she can serve as Malani’s caregiver during this time, leaving just one source of income for this family. The family needs financial assistance with gas, housing, food, and most importantly, medical expenses. The last thing her parents need to worry about right now is how they will financially afford and keep up with the living expenses and ensure the absolute best care they can provide for their daughter.

 

Malani is a Little Warrior Princess that deserves the absolute best, and we are all determined to provide it to her!!! Malani and her parents truly have a village of people around them pouring endless support.

 

If you can assist this family financially, during their time of need, please consider a donation in support of the three of them.

Any excess funds that are not utilized by the family to cover medical expenses and supplement living expenses, will be donated to the Children’s Hospital of Atlanta Aflac Center to support research. This is the institution where Malani and other children are battling childhood cancer!