Family and friends just want 11-year-old Abby Schrage of Highland to get back to “Abby Normal” as soon as possible after she was diagnosed with a cancerous germinoma brain tumor on April 26.
While Abby being stricken with a type of cancerous germ cell brain tumor is a serious matter, “Abby Normal” is a playful reference the family uses that originated in the 1974 Mel Brooks comedic classic movie Young Frankenstein.
The movie starred Gene Wilder as Dr. Frederick Frankenstein, Marty Feldman as Igor, Dr. Frankenstein’s hunchbacked assistant, and Peter Boyle as Frankenstein’s Monster. While giving Dr. Frankenstein a brain to implant in the monster, Igor dropped the “genius” brain jar, so he instead picked up the “abnormal” brain. The monster awakes and nearly kills Dr. Frankenstein. When Dr. Frankenstein questioned Igor afterward, Igor confessed he had dropped the first brain and picked up someone else’s brain, “Abby… someone” and then he said “Abby… Normal.”
Unlike the comedic scene and movie, a cancerous germinoma brain tumor is no laughing matter. However, there is a big reason for optimism.
“You never wish for cancer or a tumor, but if you did wish for it, this is the one to wish for,” said Jill Schrage, Abby’s mother. “It is 95 to 100 percent treatable. It is a great prognosis, but it is still very hard. You never want your child to have to go through something like this with cancer. It is so hard on her, and it is also so hard on the family, but I will look for all the silver linings. I have no one other way to be but positive.”
Discovery of tumor and treatment
About two months ago, Abby started having headaches. She also started taking naps, developed a loss of appetite and excessive thirst due to a dry mouth.
So, Jill took her daughter to St. Louis Children’s Hospital for blood work to test for mononucleosis, type 1 diabetes, and her thyroid.
“I was convinced her symptoms were in line with type 1 diabetes,” Jill said. “Those tests came back negative. Within two weeks later, we went back because I just knew something was off. My husband’s brother had a brain tumor when he was 9, so with family history, I wanted to make sure there was no chance.”
So, Jill wanted to go even further and have an MRI done on Abby. The MRI results showed a brain anomaly and it was diagnosed as a germinoma tumor in the pituitary gland region. A common symptom includes Diabetes insipidus, an uncommon disorder characterized by intense thirst and the excretion of large amounts of urine.
“Ironically, the tumors she has are completely different than his. Her tumor is not genetic at all. But I’m glad I was able to have that as an extra push for the MRI,”Jill said. “She does have diabetes insipidus which she will have to have long-term replacement care on that. We’ve been actually spending a lot of time here tweaking the medicines to find the right doses for her.”
Abby has finished the first of four rounds of chemotherapy. Each round of chemo takes place every three weeks and lasts approximately three days. Then she will undergo six to eight weeks of radiation treatment.
Tough on the whole family
Besides watching her daughter battle cancer, the hardest part of all of this is the affect it’s having on their family, which includes her husband Nathan and their three younger children who all are so close in age. Abby’s three younger siblings are Emma, 9, Jacob, 8, and Catelyn, 7.
“With the kids being so close in age, the little three miss their sister more than words can comprehend,” Jill said. “Emma and Abby were closest, and Emma is having a hard time because Abby is her best friend. It’s even taking a toll on Ab, as she gets teary eyed when we talk to or about her siblings.”
Jill and Nathan are trying to keep some kind of normalcy at home for the three younger children, with finishing school and all, but it’s very hard.
“We’ve had a lot of long talks that put them to bed past bedtime,” Jill said. “Their grandparents have been great about picking them up after school and staying with them until Nate or I can get home. We have been switching off every other night to be home with the kids, but it’s so hard when your family is split in half. We’ve had a lot of wonderful people offer to help with the other three while Nathan and I are at the hospital. I appreciate all of it, yet the mother in me wants to be home with my babies trying to comfort them.”
Things should be a little better once Abby is home, but Jill worries about the germ factor when her white blood cell count will be down and things will not get any easier going forward, as the couple will have to go back to St. Louis Children’s Hospital every three weeks. The next time is scheduled for May 19-23 and Abby will receive the three days of treatment.
While Abby is getting the chemo, she and Nathan both want to be with her, but again the other three always linger on their minds. They try to take the younger kids over to see Abby as much as possible, but with it being about a 45-minute drive each way, Jill said she hates to have the kids in the car for an hour and a half every time they come to see her, especially on school nights.
And once the radiation begins, it’s projected to run five days a week (Monday through Friday) for six weeks.
“When I think about these trips, I get anxious,” Jill admitted. “Not just because of the travel cost, but also again having the kids in the car for an hour and a half. Plus whatever time it takes for radiation. I fear that this time frame will fall towards the end of summer break, and I hate that they will have to spend part of their summer like this.”
Jill said her overall biggest concern is the toll it’s going to take even more on the little ones.
“Not only is this a hard thing to deal with, but I hate that we have to completely uproot and change their life because of this,” Jill said. “We’ve had many talks about this, but I still want them to retain some kind of normalcy. Also, I don’t want them to ever feel like we are focusing on Abby more or love her more. Sure she needs our time now, but they are all equally important to me. They understand, but I also can see the toll this last week and a half has taken already.”
Help from the community
Jill said the amazing thing is all of the support they have received from friends and people in the community, with a lot of people offering to help watch the kids through all of it. But Jill said realistically, she knows that there won’t always be someone available.
“We really and truly appreciate all of the love and help and I will gladly take all of the well wishes and help we can get,” she said.
On Monday of last week, prior to Abby’s volleyball team playing their last game of the year, coaches Sara Bolen and Cindy Hediger took the team over to St. Louis Children’s Hospital to visit their friend and teammate, who was receiving the third chemo treatment in less than a week’s time. The team used the mantra “Fight for Abby” to rally for the win and finish the season as undefeated champions. Abby’s team will be giving her the game ball signed by both teams.
And to help ease the burden of Jill and Nathan with medical bills, etc., Abby’s volleyball team has set up a Go Fund Me account at https://www.gofundme.com/223yu24
In addition to the coaches Bolen and Hediger, Abby’s teammates include Reese Bolen, Tiffany Hediger, Lauren Herman, Shayden Hogg, Morgan Langendorf, Gracy Levin, Madeline Rock and Kamryn Toler.
In addition, there will be a fundraiser at the Lory Theater on Saturday May 14 at 11 a.m. before the noon showing of Captain America: Civil War. There will be pizza, a raffle and a silent auction. Items can be donated for the silent auction by contacting by contacting Amanda Passmore at (618) 660-1215.
Fundraisers for Abby
Go Fund Me: Abby’s volleyball team has set up a Go Fund Me account at https://www.gofundme.com/223yu24
Lory Theater Event: there will be a fundraiser at the Lory Theater on Saturday May 14 at 11 a.m. before the noon showing of Captain America: Civil War. There will be pizza, a raffle and a silent auction. Items can be donated for the silent auction by contacting by contacting Amanda Passmore at (618) 660-1215.