‘Carter’s Story’ - The Missourian: Feature Stories

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‘Carter’s Story’

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Posted: Wednesday, August 22, 2012 12:00 pm | Updated: 8:58 am, Wed Sep 18, 2013.

Diane (Schmitt) Holtmeier knows a lot of people in town and has even more connections in the wider community.

She grew up in Washington, the daughter of a longtime Washington firefighter and former fire chief, Richard Schmitt. She also married a firefighter, the late Denny Holtmeier, who was a longtime member of Washington’s rescue squad.

For her part, Diane, in addition to raising the couple’s five children, worked as a nurse at then-St. John’s Mercy Hospital. She also has been a longtime volunteer with the Washington Fire Company Auxiliary.

Now, Diane is hoping all of the people she has met through those experiences can help her family save lives. They are organizing a marrow donor registry event for Thursday, Sept. 6, from 3 to 7 p.m. at the Washington Fire Department Headquarters, 200 E. 14th St., Washington.

There is no cost to join the registry at this event, but donations will be accepted to offset the $100 cost to tissue type each person.

The drive is in honor of Holtmeier’s grandson, Carter Faust of O’Fallon, Ill.,  who was diagnosed with acute lymphoblastic leukemia (ALL) just days before Christmas in 2009.

Little Boy With a Big Personality

Carter’s mom, Dana (Holtmeier) Faust describes her youngest son as having a “BIG personality.”

“He is extremely articulate and very sassy,” she wrote in an email to The Missourian. “Carter keeps us on our toes, and we never know what he will say or do next.  

“Last September he was the honored patient for the Leukemia & Lymphoma Society (LLS) Light the Night walk in Forest Park.  Before the walk started, Carter got up on stage and sang ‘You Are My Sunshine’ to the crowd of 8,000.

“Carter really likes super heroes. His two favorites are Batman and Ironman. He loves spending time with his family. One of his favorite things is ‘family night’ when we can all be home together and watch a movie and eat popcorn.  

“Carter completely adores his older brother Jonathan (10 years old) and they get along better than we could have hoped for.”

A video that the Faust family made last year in honor of Carter’s 4th birthday, when his birthday wish was for $4 donations to the Leukemia & Lymphoma Society’s Light the Night fundraiser, recounts the story of how Carter’s illness was discovered.

It began Dec. 21, 2009. Dana had taken Carter  to the pediatrician for what she thought was a routine sick appointment. Carter, then 2, had been sick over the weekend and she wanted to make sure he would be well enough for the holiday.

During the visit, Dana pointed out some unusual bruises that Carter had developed on his torso, arms and legs. The doctor ran some tests and the results revealed the ALL.

The family, who live in O’Fallon, Ill., were told to get Carter immediately to St. Louis Children’s Hospital, where doctors would be waiting for them. When they arrived, they were told he would be in the hospital for at least 30 days.

“It was earth-shattering news for our family,” Dana Faust says in the “Carter’s Story” video, now available on YouTube (www.youtube.com/watch?v=ebVg5LFWmzM).

“By the end of that day, our lives had been changed forever,” Jeff Faust added.

Life since then for the Faust family has been filled with a range of emotions.

Carter had a year of intensive chemotherapy and his family had to watch as he lost his hair, his appetite and his strength.

“He was nauseous all of the time, and he couldn’t go to preschool because his immune system was shot,” recalled Holtmeier.

But when the year ended, the family was hopeful.  Carter’s ALL was in remission. He then started a 2 1/2-year course of maintenance chemotherapy and, while life still wasn’t easy, it was easier than it had been, said Holtmeier.

“He was able to eat and go to preschool.”

Then earlier this summer, just eight months from being finished with his course of maintenance chemo, Carter relapsed.

“He developed a low-grade fever, and Dana and Jeff had instructions that anything over 101, they should take him immediately to Children’s (Hospital),” said Holtmeier.

The next day, Carter’s blood work showed his ALL was back. He’s been in the hospital ever since.

“He recently suffered an invasive fungal infection in his left sinus and eye,” Dana Faust told The Missourian in an email last week regarding Carter’s condition.

“Because of the infection, he lost his left eye,” she wrote. “He also received some very aggressive treatment for the infection. He ended up on a ventilator for two weeks.  He was extubated today (8/16/12).

“At this point, the infection appears to be under control and he will need to begin aggressive chemotherapy to get the leukemia back into remission. Once he is in remission, he can get a bone marrow transplant.”

“We’re on a day-by-day, hour-by-hour time frame to see what’s next,” said Holtmeier. “They can’t give us a time frame.”

Without a marrow transplant, Carter’s chances of survival are 20 percent, she noted. With a transplant, his chances increase to between 60 to 70 percent.

The National Marrow Donor Registry (Be The Match) has identified multiple potential marrow donors for Carter, Dana Faust noted.

“These matches are preliminary, but it does look promising,” she said. “We were incredibly relieved to know that potential donors are out there, but a lot has to happen just perfectly to get from potential donor to actual transplant.

“We don’t know when or where the potential donors went on the registry so we don’t know if they are still available and if they are still in good health and willing to donate.”

The Fausts are grateful to the Holtmeiers for organizing the Be the Match Marrow Registry event for Sept. 6 in Washington. Even though it may not produce a better marrow match for Carter, it very well could help save the life of someone else’s child.

“The last few years have been challenging for Carter and for our whole family,” Faust wrote in her email. “The most recent complications of relapse and infection have been some of our darkest times.

“Even though Carter may already have a potential marrow donor, there may be a better match out there and we know with certainty that there are other children and adults out there who still need a match.  

“The test to get on the registry is so simple and quick — we hope to have an overwhelming response.  Please extend our heartfelt thanks to all those who come out to the bone marrow drive and get tested.”

Be the Match

Carter’s brother and numerous relatives have been tested to see if anyone is a good marrow donor match for him, but none are. Holtmeier said that’s not unusual.

“Only 30 percent of the time are siblings are ever a good match,” she noted.

Denise Mosley, an account executive with Be The Match Registry which will conduct the registry event here Sept. 6, said that’s what makes it so important to register as many people as possible.

“Thousands of patients with leukemia, lymphoma, severe sickle cell  and other life-threatening diseases need an unrelated marrow donor transplant . . .They depend on the Be The Match Registry to find a match and to get a second chance at life,” said Mosley.

“Many patients do find the life-saving match they need, but more support is needed to be able to help all patients.  Even with a registry of over 10 million, there are patients waiting and hoping, unable to find a match.”

Minority registrants are even more crucial since marrow matches are based, in part, on race and ethnicity, as well as HLA typing or DNA.

“There are simply not enough racially or ethnically diverse members on the registry to meet the needs of patients,” said Mosley.

All it takes to join the marrow registry is a cheek swab. In fact, Mosley said it should only take 15 minutes for people attending the Sept. 6 registry event from start to finish.

There will be four stations. At the first, registrants will review the medical guidelines for joining the registry. At the second, they will complete paperwork, filling in details like their driver’s license number, Social Security number and the names and contact information for two people who don’t live with the registrant or with each other.

“This is to help us track you down years later if we need to,” Mosley explained.

There also will be medical questions to answer and more personal information.

At the third station, registrants review the forms to make sure they are completed correctly. And at the fourth and final station, volunteers explain how the registrant should swab their cheek.

Who Can Register as a Donor?  

Anyone between the ages of 18 and 60 (up until their 60th birthday) who is in good general health can potentially become a volunteer marrow donor, said Mosley, although there are some health conditions that will prevent some people from being added to the registry list.

These include:

HIV or risk for HIV;

Hepatitis or risk for hepatitis;

Most forms of heart disease or cancer;

Chronic lung condition;

Diabetes requiring insulin or diabetes-related health issues;

Diseases that affect blood clotting or bleeding;

Recent back surgery or severe ongoing back problems;

Autoimmune/neurological disorders, such as lupus, rheumatoid arthritis or multiple sclerosis;

Being an organ or marrow transplant recipient;

Being significantly obese (there is a maximum height-to-weight ratio for potential donors); and

Current sleep apnea.

Above everything a person must consider before joining the registry, however, is their commitment to being ready to donate if the call comes in that they are a match.

“The worst thing that can happen is you join out of guilt or without having a clear decision,” said Mosley, because if you change your mind or refuse to donate if and when the time comes, that is devastating for the family of the person waiting for a match.  

“When you get the call, we want you to be committed to helping anyone in need.”

Mosley also noted that young donors, those between the ages of 18 and 44, are ideal.

“Research shows that cells from younger donors lead to more successful transplants,” she said. “That’s because younger donors produce more and higher-quality cells than older donors.”

Two Ways to Donate

Many people may be surprised to learn that there are two ways for donating bone marrow, and one is as simple as donating blood.

“About 75 percent of the time, the (marrow) donation is done through blood donation, similar to donating platelets or plasma,” said Mosley.

This method, called peripheral blood stem cell donation, involves receiving an injection for five days prior to donating to increase the amount of stem cells made by your bone marrow, which are released into the bloodstream. 

The stem cells are extracted via apheresis.  Blood is removed through a needle in one arm and passed through a machine that separates out the stem cells, explained Mosley. The remaining blood is returned to the donor through the other arm.

Surgery is required to donate marrow only about 25 percent of the time.

“Under general anesthesia, hollow needles are used to withdraw liquid marrow from the pelvic bone area,” said Mosley. “This procedure is usually done if you match a child or a teenager.”

Mosley is quick to point out that the “crazy things” people have seen in the movies or on TV regarding marrow donations are simply not true.

As stated earlier, there is no charge to join the marrow registry at the Sept. 6 event at the Washington Fire Headquarters, although donations are being accepted to offset expenses.

To make a donation in Carter’s name, people can visit http://www.bethematchfoundation.org/goto/Carter.Faust or bring them to the registry event.

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