It is the first weekend in November of 2012 and the Frevert family is leaving their Phoenixville home and traveling to Long Island. Julia Frevert is driving her daughter Kassidy, 6, son Kevin, 1, and newborn son, Brendan, to visit their grandparents. Julia’s husband, Tom will remain in Phoenixville while they are away.
That is the plan, anyway. What none of them can know is that Tom will be joining them in New York in less than 24 hours and, while they were scheduled to stay for only a long weekend, the family would not return to their home for almost two months.
The Freverts remained in Long Island to be with Kassidy who, after experiencing painful abdominal cramps and bouts of bloody diarrhea, was admitted to Cohen Children’s Medical Center fighting a life-threatening illness known as HUS.
HUS, or Hemolytic-Uremic Syndrome, is a rare condition that develops after exposure to a specific strain of the E.coli bacteria. The strain is called E.coli 0157:H7 and, while causing infection in the digestive tract, also releases a toxin that incites the premature destruction of red blood cells. Most children infected by this strain of E.coli recover quickly without long term effects on their health. In rare instances, as with Kassidy, the damaged blood cells build up in the kidneys, preventing those organs from performing their job of filtering waste and excess fluid from the bloodstream and causing them ultimately to shut down.
Kassidy’s case is atypical and quite severe, and her kidneys sustained significant damage resulting in long-term kidney failure. Her mother, Julia, explained that “there’s really nothing can do to treat this, the only thing they can do is support the body.”
Since nothing can be done to heal or reverse the damage that was done to Kassidy’s organs, regular dialysis treatments are needed. Unless Kassidy is fortunate to receive a kidney transplant, she will need these treatments for the rest of her life.
Weeks passed and Kassidy remained at the hospital. As the length of her stay stretched into the second month, doctors decided she was finally well enough to return home. The Freverts anxiously awaited her discharge, but then she unexpectedly encountered a major setback. Kassidy again developed serious pain in her abdomen, and her belly was distended. Upon examination, doctors found two holes in Kassidy’s colon and emergency surgery was necessary to repair the damage.
“We thought we were going home and now Kassidy’s being rushed off to surgery again, she was crying and scared”, Julia recalled.
Kassidy told her mom that she was afraid to die.
There were serious complications with the surgery and, in the end, doctors removed over 90 percent of her bowels. She stayed in ICU recovering until doctors decided she could be discharged before Christmas.
“When she left the hospital she couldn’t even sit up, we had to carry her everywhere, it was pretty bad,” Julia said.
Today, Kassidy is home with her family.
“She has her good and bad days, but this is in a whole different world then at Christmas time,” said Julia. Recently, Kassidy had a catheter implanted allowing her to receive peritoneal dialysis, which must be administered every day but can be done at home.
The switch to peritoneal dialysis treatments has made life easier for the Freverts. In months prior, three days a week Julia drove Cassidy nearly an hour to Children’s Hospital of Philadelphia to receive hemodialysis treatments. Each treatments session lasted hours.
They are still in the trial period and Julia explained that the new treatment ,“has been kind of rocky. Sometimes the catheter works really well and sometimes it doesn’t”. So, there is a chance Kassidy will have to resume hemodialysis and the lengthy commutes into Philly.
“I would hate that”, admitted Julia of the possibility, “it ate up our whole life”. The amount of time devoted to keeping such a schedule, in addition to all the time initially spent in the hospital, has taken its toll on the Freverts. Julia, a nurse, is no longer able to work. Tom bears the burden of maintaining their main source of income.
The illness has taken the greatest toll on Kassidy. She missed most of her year in kindergarten, has endured countless frightening and painful procedures and has developed anxiety regarding hospitals. She must ingest so much medication daily that it’s now administered through a tube in her belly. She often cries to have her old life back.
Since the kidney damage is irreversible and the dialysis treatments are imperfect, Kassidy needs a kidney transplant to lead a life anywhere close to what it was before becoming sick. Because of her uncontrolled high blood pressure, a result of the severity of the damage to her kidneys, the sooner Kassidy receives a transplant, the better.
Kassidy has O+ blood type, which means that she needs a donor with blood type O. As luck would have it, her father Tom has that blood type. Many factors must be taken into consideration when transplanting a living organ so, this spring, Tom was evaluated to determine if he could give his daughter one of his kidneys.
The answer was no. It was discovered that Tom has one abnormally situated kidney, leaving him with only one kidney that doctors can be certain is functioning properly. Tom’s response was, “Please take it, I don’t care.” Bound by ethics and the law, the answer from the doctors remained the same.
Kassidy is on a list to receive a kidney from a deceased organ donor but her position on the list is tentative. Every month she has blood drawn, tested and, based on the results, she either remains on or is taken off the list.
“Unfortunately other family members have high blood pressure so surgeons won’t consider them as donors”, explained Julia. However, she said that, “Tom’s brother is currently being worked up, our hope is that he is a good match”.
For now, the Freverts manage as best they can. As Julia explains it, the situation “isn’t perfect but we are in a better spot then we were a few months ago.”
Kassidy turned 7 years old on July 4th and, while it is hard for them to accept what happened, Julia feels thankful for how far they have come.
“Today Kassidy is not in a wheelchair, she’s running around, she can go swimming. She’s doing the things she normally would be doing,” said Julia. “We are just really lucky she made it because her case was so severe… …she could’ve died and we just have to be grateful that she’s still here with us”.
• Anyone interested in helping Kassidy and her family manage medical expenses which will span her lifetime can make a donation on her website at http://www.gofundme.com/2ph5ho
• Anyone interested in becoming a live donor can call Sonya Lopez, the transplant coordinator at Children’s Hospital of Philadelphia, at (215) 590-2449. Julia would like to make people aware that there are many children, besides her daughter, waiting for organ transplants.