Editor's Note: At the family’s request, first names are only being used in their effort to protect the children from finding out how severe the diagnosis is at this time. The family initially decided not to tell their twins that Sarah has cancer, but they have since found out. They still do not know the severity of the cancer and requests that the public be understanding as well.
Sarah Elizabeth, 12, was first diagnosed with DIPG (Difuse Intrinsic Pontine Glioma), a rare form of brain stem cancer, on December 3, 2016 and was given months to live.
That is a day Mechelle, a Bonne Terre mother of twins, and her husband Jim, will never forget. Their then 11-year-old daughter Sarah smiled at her parents and the left side of her face did not move. This is one of the side effects from DIPG, because it is always found in the brainstem where the brain controls many basic functions like breathing and swallowing, as well as muscles that help with speech and eye movements.
Mechelle said they took her to Children’s Hospital and after eight hours, many doctors and an MRI they were told that their baby girl had DIPG. During research, the family found a clinical trial in New York being done using Convection Enhanced Delivery which involves many surgeries and is very dangerous. They decided to search again and found a similar technique being used in London. A doctor is using nanobots to map the blood vessels and direct the catheter to the tumor. It consists of one surgery and has been prolonging lives.
Sarah was treated by Pediatric Neuro-Oncologist Dr. Stergios Zacharoulis (Dr. Z) at The Harley Street Clinic Children's Hospital in England for several months.
“My baby is at 13 months with no progression. I've been given seven months more than what they told us,” said Mechelle. “November was her last MRI and at that time it was still stable. We have one every two months and Sarah’s next MRI is Jan. 16.”
Mechelle said while they were in London they had MRIs more often because if Dr. Z had the slightest concern, he would call for an MRI.
“It doesn’t really matter here because no matter what the MRI says … it isn’t like they are going to try some new treatment on her like he would do,” said Mechelle. “I am talking to two doctors in Chicago about clinical trials, but the trials are basically all for children in progression.”
Mechelle said that makes no sense to her at all. She questioned why they don’t have a trial to try to stop progression from ever taking place at all.
“They say that if she isn’t in progression, then she doesn’t need a trial, but she still has a giant tumor in her head,” said Mechelle. “As far as the nanobot surgery, that can only be done if the tumor shrinks. The almost 7 months we spent in London we managed to keep it stable, but it has remained the same in size.”
Mechelle explained that Sarah just had surgery last week to place a G-tube in her tummy. A gastrostomy tube or G-tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure children with difficulty eating get the fluid and calories they need to grow.
The nutritionist at Cardinal Glennon wanted them to try a particular food in Sarah’s tube, so they did, but it has been making her sick.
“She isn’t feeling so great today, the foods we were giving her didn’t sit well and she has an upset tummy, but she’s been feeling really good otherwise,” said Mechelle. “This little girl has not once ever complained. On Dec. 27 she was released from the hospital with two incisions in her tummy and she wanted to sit up in her bed ... I helped her and asked if she hurt.”
Doctors said Sarah would be in a lot of pain, but Sarah said she felt great.
“So even though they know best ... we are going to follow our own instincts,” said Mechelle. “Following our own instincts caused us to take this baby to another country, which has given us almost seven months longer than they said we would have with her. As of now, there is still no progression. We will take every single day we can get though.”
Mechelle said it cost between $25,000 and $30,000 a month in London and right now they are in the process of trying to pay off their balance with the Harley Street Clinic so they can fly over for more medication for Sarah.
“I’ll fly to hell if that’s where I need to go to find this baby's medicine,” said Mechelle. “It would make things much easier if they had it here, but you do what you need to do. They don’t have three of the medications she is on here in the States.”
Mechelle said they will be flying back to London as soon as they can to pick up the medication they can’t get here.
In light of everything, Sarah is doing exceptionally well. No two cases of DIPG are alike and while Sarah is having trouble walking because she is weak, Mechelle said she is still so full of life and acts like any other 12 year old.
Mechelle said she sings her favorite songs and enjoys life each day. Recently her dad set Google Home up in her room so if she wants to call someone or turn her light on/off she can just tell Google.
“She has even asked for hand and knee pads. She said she wants to start crawling around to build her strength,” said Mechelle. “We were told by a doctor, who had gone over Sarah’s chart, that if she had this recent surgery, chances were high that she would die on the operating table.”
“Dr. Z always said no two cases are the same and you can’t assume that they are,” said Mechelle. “This is not something you can read about and expect a child to follow a textbook list of guidelines as far as progression, symptoms, reaction to treatments, etc. I wish they would begin to understand all of this in St. Louis and stop acting like my daughter is knocking on death's door when in reality she is smiling, laughing and sitting up in bed singing along with music videos on her phone ... I’m very realistic ... I know that any given day this all can change, but today isn’t that day.”
Since coming back from London, Mechelle said Sarah found out she had cancer while at Cardinal Glennon from some of the staff. While they have worked hard to protect her from this news, it was inevitabl. She still has no idea that she has DIPG and that it is terminal.
“Her twin, Garrett, also knows that Sarah has cancer, but he just doesn’t know it’s DIPG,” said Mechelle. “We have talked to Sarah to see what she knows and if she has any questions ... she said you and Daddy will take care of everything, 'I don’t want to know.'”
Mechelle said they told her if she ever has questions or feels the need for information concerning anything that’s happened or may happen in the future her they are right here and will answer anything she asks.
A gofundme account, Sarah's Medication, has been set up by a family member to help raise money for Sarah’s medication since they are running out and they can only get it in London. Visit https://www.gofundme.com/sarahs-medication for more information on how to donate.