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.
Mineral Area College had a difficult 2017. In addition to state budget cuts and a dropping enrollment, one of its long-time trustees had to retire due to physical issues and another died only a few months after he was honored with the trustees boardroom being named in his honor.
The MAC Board of Trustees received a preview of next month's homecoming festivities from Director of Development Kevin Thurman. He announced that homecoming was set for Feb. 25 and that the men’s and women’s basketball teams would be battling against the State Fair Roadrunners.
Trustees received a spring enrollment report from Registrar Pam Reeder. The stats showed that student enrollment is still "soft" compared to the previous year, but also starting to show signs of improvement.
Facing the double-whammy of state budget cuts for institutions of higher learning, along with a decline in student enrollment, Mineral Area College prepared to tighten its belt to better help the school weather its current financial storm.
Dr. Steve Kurtz, MAC president, announced that Missouri Department of Higher Education Commissioner Zora Mulligan will be this year's commencement speaker on May 13.
Music Department Chair Dr. Kevin White and Director of Jazz Michael Goldsmith updated the trustees on the upcoming Carol Moore Jazz Festival.
Statistics indicate that Mineral Area College’s summer and fall semesters would see a significant decline in student enrollment.
Three members of the MAC Board of Trustees that ran uncontested in the April 4 election, were sworn into office for a two-year term by outgoing Board President Scott Sikes. They were Subdistrict 4 Trustee Harvey Faircloth, Subdistrict 2 Trustee Lisa Umfleet, and Subdistrict 4 Trustee Dr. Don VanHerck.
The board approved the George K. Baum & Company and Gilmore & Bell Bond Counsel to prepare and come back to the trustees with a refinancing place for the school's Series 2008 Certificates of Participation to lower interest costs.
Mineral Area College’s 93rd commencement ceremony had 385 students awarded associate degrees in the Robert E. Sechrest Sr. Field House.
After last month’s statistics indicated that MAC’s summer and fall semesters would see a significant decline in student enrollment, Dean of Students Jean Merrill-Doss was able to present a more positive report to the school’s board of trustees.
Vice President of College Affairs/Dean of Career and Technical Education Gil Kennon announced his retirement from Mineral Area College. He began working for the college in March 1994.
The trustees selected Roger McMillian — long-time MAC business and computer networking instructor — to fill the vacancy left by the retiring Kennon. McMillian will serve as dean of the Career & Technical Education Division.
Kurtz presented the 2018 fiscal year budget to the trustees for approval that, because of expected cuts in the state’s funding of higher education and a decline in enrollment, has been cut wherever possible.
In light of Dr. VanHerck’s many years of service to the college, the board presented its longest-serving member a plaque in his honor and announced that the conference room connected to both the theater lobby and the president’s office will now be known as the VanHerck Board Room.
The board of trustees learned that fall enrollment is down 9 percent.
The trustees received an update on the ApprenticeshipUSA program.
The board voted to reject all bids received for the remodeling of North College Center with the use of HB19 funds.
Sally Parker-Nash, a 19-year member of the MAC Board of Trustees was recognized by VanHerck and the rest of the board for her many years of service. She tendered her resignation from the board in March 2016 due to serious health issues that left her wheelchair-bound.
The trustees learned that the school's fall enrollment is around 7 percent below what it was a year ago.
Dr. VanHerck, Mineral Area College’s longest-serving trustee, died at the age of 82.
Kurtz opened the trustees meeting with a memorial to VanHerck. The place long occupied at the boardroom table by the beloved trustee was decorated with a black ribbon and single red rose.
The trustees approved a bid of $348,820 submitted by Brockmiller Construction for upgrades to the North College Center.
The Mineral Area College Board of Trustees heard a less than heartening spring enrollment update when it met in regular session Thursday afternoon in the VanHerck Boardroom.
It was announced McMillian was honored with a service award presented by the Missouri Community College Association.
The school’s agriculture department, made up of agribusiness instructor Alan Bayless and horticulture instructor Dr. Chad Follis, was honored as the outstanding agriculture department in the state at the Missouri Association for Career and Technical Education Conference in Springfield.
In the absence of Thurman, MAC President Dr. Steve Kurtz announced that the MAC Foundation's Enhancement Grant fundraising campaign had met its goal.
In her 2018 spring enrollment report, Merrill-Doss announced that numbers were still down compared to a year ago.
Facilities Director Barry Wilfong reported that work is progressing well with the North College Center construction project.
An area man is being charged after police say he assaulted his girlfriend and her dog.
Christopher Lachance, 24, is being charged with a class E felony of domestic assault in the third degree, a class E felony of unlawful use of a weapon and a class A misdemeanor of animal abuse.
According to a probable cause statement, on Dec. 8 a St. Francois County deputy was called to a home in the 5,000 block of Jarvis Road for a physical altercation.
When the deputy arrived he found Lachance drunk and fighting with his girlfriend.
She said he had struck her several times and she said she was able to push Lachance away. Once she was able to push him away, Lachance went into her bedroom and grabbed her dog out of its kennel by its neck. Lachance began violently throwing the dog around the room.
The woman said once Lachance released her dog, he walked her outside with a Glock 43 9mm handgun and fired it into the ground. Lachance told the woman that was what he was going to do to her and her dog.
The deputy reported that Lachance was visibly drunk and when he went to retrieve the gun out of Lachance’s car he found a 12 pack of beer.
Lachance was arrested and taken to the St. Francois County Jail and charges were later filed. He is wanted on a $12,500 bond.
For many, Mineral Area College was a first foray into higher education. Local students filtered through before starting a new career or going on to a traditional university. The institution has become an icon in the community.
But how many people remember its humble beginnings, before it was known as MAC, before there was a field house, or theater? Most don’t remember it being anything else than what it is, a community college.
Beginning with his first day of class in 1967, Jim Hrouda began a 50-year courtship with the college that still continues today. Hired to teach science and technology to the local student body, Hrouda has witnessed a great deal of history with the local school.
“I started teaching at Mineral Area College in 1967,” Hrouda said. “Originally I was hired for the technology department, so I taught civil technology and surveying. I did that until I retired, but I have also taught Earth Science for 30 or 40 years as well.”
Although officially retired, Hrouda still is an active professor who is helping students attain their dream. He has just been doing it longer than most others.
For those who believe in destiny, it could be very easily said that Hrouda was destined to be a fixture at MAC. During a time in his life when he was needing to do something different, he responded to an ad in one of his academic journals about a small rural college needing a technology professor, and although it was a far cry from Chicago, he applied.
“So I answered the ad and came down here,” Hrouda said. “I really don’t know why. If you think about it, there wasn’t much here at the time. Highway 67 was just pieces of four lanes. Where the campus is now was just a field and the towns were not very big at all.”
Hrouda, who had been working for US Steel as an architectural engineer, decided to give teaching a try.
“After seeing the college, I thought I would give it a try,” Hrouda said. “So, I took a leave of absence from US Steel. If it didn’t work out, I could always go back to Chicago and US Steel.”
When Hrouda first came to the Parkland, Mineral Area College had no campus or buildings.
“The college was scattered all over Flat River,” Hrouda said. “I was in the YMCA building right by the railroad tracks. We had one whole floor, and my room was actually right above the pool.”
When Hrouda talks about starting his teaching career at MAC, he mentions how he has seen the college grow from its early days to a modern community college. But for Hrouda, the last 50 years has been about more than just seeing the college grow. It has been about his students, his colleagues and how education, through technology, has advanced.
“We have trained a lot of different people who have went to work after their two years in most of the cities down here,” Hrouda said. “We have students who are employees in the water treatment plants that we have trained. Most of the surveyors in the area have gone through our program, and most of the municipal workers and many highway department employees were trained here. You can really see the effect we have had all around us.”
One of Hrouda’s first experiences with MAC students occurred shortly after being hired, and the incident may have been culture shock for both the man from Chicago and his students from the Parkland.
“One of my first experiences with my students occurred shortly after I got hired,” Hrouda said. “I took a group of students to St. Louis, and we stayed overnight in a hotel. I hadn’t heard from them for a couple of hours, so I went to look for them. I discovered they had been riding the escalator up and down because they had never rode one before.”
Over the last 50 years, Hrouda has also witnessed a cultural change in regard to the faculty environment. With the advent of adjunct professors, some of the camaraderie from years past has been lost.
“We use to have a faculty lounge where we would meet almost every day for lunch or a little snack,” Hrouda said. “So we always got together. We had picnics and float trips every year. We knew each other’s families. There was always a lot of activity to keep people together.”
Although Hrouda retired as a full-time professor in 1998, he has never really left as he still teaches most semesters. When he is not teaching, the retired department chairperson travels.
“The last two or three years, I teach half the time and travel the other half,” Hrouda said. “I have done a lot of world traveling, but I haven’t been through the United States all that well. During the summer we are taking different quadrants. We started in Southeast in Florida, Georgia and Alabama. One year we went east to Washington DC and the surrounding area and this summer were are going to the northeast to Maine and that area.”
Although he has been an educator for 50 years, Hrouda said, if he could, he would do it all over again.
“I would still go into teaching today,” Hrouda said. “It would be different, but I would still do it.”