April 28, 2010 – July 27, 2016
Diagnosed: August 3, 2015
Written by Sarah’s Grandmother, Georgia
Sarah Jakilyn Bryant was born on 28 Apr 2010. She is five years old. She is the younger sister of Ava, 13, Emma, 6, and older sister of Aiden, 4, and Aubri, 3. Sarah was always a healthy child, so it came as a huge surprise when she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on 3 August 2015.
I am Sarah’s maternal grandmother, and I picked her up from daycare on Friday, the 31st of July. When I got there, she was sound asleep on the floor. I tried to wake her, but it was hard. Finally, she opened her eyes and slowly got up. Her eyes were weak and she was very lethargic. When she talked, she sounded like a much younger child. In fact, I got on to her for talking like she was. We got to my house and she went and played outside with my puppies; everything seemed okay even though her eyes were still very weak and she was talking funny. I took her home that evening.
The next morning, when she woke up, her parents noticed her eyes were slightly deviated, her speech was slurred and she was walking funny. They took her to the doctor and he said Sarah must have picked up a virus. So they took her home and continued to watch her through the day. On Sunday morning, when they woke up to get ready for church, Sarah couldn’t get out of bed. She couldn’t move, had trouble speaking, and her eyes were totally deviated. I met them at the Emergency Room, where the doctor was running tests on Sarah to determine what was wrong with her. We knew when he walked back in the room after her CT scan that things were not good. He told us she had a mass on her brain stem.
They ordered an emergency vehicle to take us up to Scottish Rite Hospital in Atlanta. Lisa rode in the ambulance with Sarah and I followed behind them in my car. Scott stayed behind with the other children. Once at Scottish Rite, we met with the neuro-oncologist. He had looked at Sarah’s scan and said it was a tumor on her brain stem, and it had gotten so large that it had bled into itself. We got in our room in the PICU and they prepared Sarah for an MRI. It was a very traumatic experience for her. I felt she should have been given some sort of twilight shot because they missed getting the needle in her arm several times. In fact, she had a bruise at that site for about a month and a half afterward.
After the MRI was complete, an oncologist came to the room to discuss the results with us. She said, based on her experience, it appeared that Sarah had DIPG. What??? What in the world is that? We’d never heard of it, of course. We had just entered the terrible world of pediatric cancer. The oncologist said she was meeting the next morning with a team of oncologists and they would discuss Sarah’s case. When she came in the next day, she said they all agreed – Sarah had DIPG. Not only was the tumor on her brainstem but it was diffused, meaning the tumor was intertwined with healthy cells making removal impossible. I believe she said Sarah had less than 12 months to live. I was in shock. We asked about other cases. She said she knew of two patients that had lived past 12 months.
While sitting in the PICU, trying to absorb this news, I started looking up DIPG. I found out that there are about 250 children diagnosed with this tumor yearly in the United States, surgery is not an option, and there are no survivors of this disease. The doctor later said the only option we had to extend Sarah’s life was radiation, so that’s what she did – every Monday through Friday, for six weeks. Lisa is a nurse and she started looking into trials for this type of cancer. What she found was not encouraging. We stayed in the PICU for a week, and then we were relocated to the Ronald McDonald House (RMH) in Atlanta. What an awesome place! We were very well taken care of. Various businesses and organizations provided meals and entertainment for the children. Sarah was especially excited when the Wish for a Day Foundation sent the Disney Princesses to RHM. I had never seen her so happy. She was in tears.
Sarah started her first day of radiation on 10 August 2015, and had her last treatment on the 21st of September. She was a champ all the way through. Very brave and never complained. We found things to keep her occupied at RMH, and tried to sort out our thoughts about this monster – DIPG. I spent two weeks at RMH with Lisa and Sarah, helping out, going back and forth between RMH and The Winship Cancer Institute where she had her daily radiation. We had visits from my sister and my niece. And, of course, they brought her presents. The doctor started her on Decadron, a steroid, which made her want to eat constantly. When she wasn’t tired from the radiation treatments, she was eating. The oncologists worked with Sarah on getting the Decadron levels right. There were nights when she would talk to people in her sleep. She would also giggle – a lot, while asleep. She wouldn’t recall any of it the next day. Of course, I cherished every single moment with her. Some nights she would sleep with Lisa, and some nights she would sleep with me.
Lisa and I were both on leave from work, so I came back home at the end of the third week in Atlanta so I could return to work. Sarah finished up radiation on the 21st of September and she and Lisa headed home. She had been doing school work in Atlanta that was being sent up to her. She started back to school as soon as she got back. She had some problems, headaches and left side not tracking, so the doctors put her back on Decadron. As a family, we are strong Christians and believe in the power of prayer and healing miracles. Our family, along with many of our family members and church family are praying for God’s will to be done in Sarah’s life. We know he is still in the miracle making business. Sarah has been so unafraid and so brave during all of this. We are so proud to see how hard she fights and how great her faith is at only five years old. In fact, while at RMH with Lisa, Sarah prayed and asked Jesus to come into her heart. Thank you, Jesus!
We continue to research, read, call, email and do all we can to give her a fighting chance to beat this. The cure for DIPG can’t come soon enough for us. We desperately need more time to find it and pray our baby girl keeps fighting until then. Friends, family, etc., have been so awesome with sending cards, gifts, and prayers. We cannot thank you enough. A special thank you to Jo Bishop, who has been so supportive. And to the Michael Mosier Defeat DIPG Foundation. And to Binkeez for Comfort, Sammy’s Superstars. I think it is awesome that families that have lost a child to this horrible disease continue to educate people around the world. Praying that one day soon a cure will be found.
Currently:
Sarah had her follow-up MRI on 2 November 2015 and they found that the tumor had shrunk. They decreased her Decadron. She is on a registry to do a trial with medication; more to follow on that. Her Make-A-Wish wish was granted. She wanted either a horse or to fly on an airplane and go to Disney World. So, they are driving to Atlanta on the 13th of December and flying down to Orlando to spend seven full days and nights on the resort. How awesome is that! She will get to do behind the scenes stuff with the princesses, etc. When I think of how excited she was when the princesses came to RMH, I just can’t imagine how great this will be for her. Thank you, Make-A-Wish Foundation!
Sarah Jakilyn Bryant, 6, of Leesburg, went home to be with Jesus on Monday, June 27, 2016 after a courageous battle with (DIPG) Diffuse Intrinsic Pontine Glioma. (Source: Albany Herald).
Learn more about Sarah:
On Facebook: Team Sarah Jak.
