A Christmas wish
Ten-year-old Tony Scherkenbach shared good news with Santa Claus during his visit this year — the boy's previous Christmas wish had come true.
"All Tony wanted (last year) was his dad to come out of the hospital," Santa explained after visiting with Tony and meeting his dad, Ken, at the annual Pine Journal open house Nov. 30 — the same place Tony had visited with Santa the year before.
"I told him, Mrs. Claus and I will pray for you and your daddy and your family," Santa recalled. "We'll pray that he gets well and comes home to you."
It took 72 days in the hospital for what was supposed to be a three-day stay, but Tony's dad finally did come home. His wife, Maria, and their two children, Angel, 17, and Tony, were over the moon to have him back, even if he still had a lot of recovering to do.
"This Christmas is a far cry from what we were experiencing last year," said Maria during an interview Monday night.
The story of Ken's health crisis started in June 2015, when he was getting ready for work and accidentally jabbed his toothbrush into the soft tissue under his tongue. He ignored it, but the pain didn't go away. When he checked it in the mirror at work, the area was swollen and bloody. He called the doctor's office, and they encouraged him to come in. Once there, they gave him an exam and a blood test and sent him on his way.
Ken made his way through the traffic and was almost back to work at the St. Paul Public Housing Agency, when the doctor's office called and told him to come back.
"I told them I couldn't get back there easily, and they said 'Tell your work you need to go to the hospital then,'" he remembered.
His platelet count was 6,000 — a normal platelet count ranges from 150,000 to 300,000. According to mayoclinic.org, if a person's platelet count falls below 10,000, internal bleeding may occur even without any injury.
"I had noticed bruising before that, but I didn't think about it," Ken said.
Eventually doctors diagnosed him with ideopathic thrombocytopenic pupura (ITP), a bleeding disorder in which the immune system attacks and destroys platelets, which are necessary for normal blood clotting.
"I was never so happy to find out my husband had a condition," said Maria, explaining that they initially thought Ken might have leukemia.
Doctors tried a number of different treatments, including infusions to boost his platelet count. They worked in the short term, but then his count would drop again.
They also prescribed prednisone. Maria said Ken didn't do well on the steroid, but he was on it for a quite a while, which led to even more complications later.
Doctors in the Twin Cities seemed to get Ken's ITP under control, but his symptoms returned in July or August 2016. By this time the family had moved north, back to Maria's hometown of Cloquet. Ken was working in accounting at Black Bear Casino Resort, and Maria was working at K1 Sportswear. They were renting a home, with plans to purchase it, when Ken got sick again.
This time nothing seemed to work. Ultimately Dr. Basem Goueli, the cancer center's medical director at St. Luke's Hospital in Duluth, suggested they do a splenectomy, a removal of the spleen. It would eliminate the source of the platelet destruction. Although complications can occur, he told Ken to expect to be in the hospital for three days. Maria and Ken both speak highly of the staff and doctors at St. Luke's.
The surgery was set for Election Day 2016. Ken voted early, absentee, and checked into the hospital at 5:30 a.m. that Tuesday, Nov. 8.
"The last thing I really remember is going into pre-op," said Ken.
From bad to worse
The surgery seemed uneventful, but Maria said Ken's behavior afterward was "strange." He wasn't very "with it," and he slept a lot. He would open his eyes to answer a question and go right back to sleep. He didn't want to move around, even though he was supposed to be exercising and getting ready to go home. He didn't want to interact with people either.
By Nov. 12, Maria got a phone call a few hours before she was supposed to pick him up and bring him home.
They told her Ken had been moved to the Intensive Care Unit, because he'd gone into hypovolemic shock, a life-threatening condition that results from a rapid loss of blood or bodily fluids. In his case, Ken explained, he'd lost 20 percent of his blood.
By the time Maria got to St. Luke's from Cloquet, Ken was on a breathing tube and a feeding tube. Doctors decided to put him in a medically induced coma.
"From then until Dec. 8, he was improving slowly," she said.
It's a date she'll never forget. In the early morning hours of Dec. 8, hospital staff were weighing and checking Ken, and the feeding tube slipped and food started filling up his lung. His lung collapsed and he went into cardiac arrest.
Maria got another call from the doctor, at 3 a.m.
"He said you can come if you want and I told him I was on my way," she said.
By the time she got someone to let her in the building and got to ICU, Maria said it was "like a scene from ER." Doctors, nurses and machines were everywhere. It took them 20 minutes to get a breathing tube in — 20 minutes that Ken went without oxygen to his brain.
Although he seems fine, Ken has neurological issues he didn't have before and it takes him longer to process and do things than before. There was other damage, too, as his pancreas wasn't working, his liver was damaged and his kidneys started to shut down. He was on dialysis for weeks. At one point they even started talking transplants, not knowing if his kidneys would recover.
Again, he slowly got better. And for the family, it felt like very slowly. Some days there was no improvement at all.
"I'd come in, say 'Hey baby,' and sit and talk to him," Maria said. "I'd read him the Bible. I brought books. We started a Spotify playlist for him. I asked all of his friends on Facebook, if they know any songs that might have been his favorites, tell me.
"At one point I know he was in there. He doesn't remember this, but there was a particular song that played and he was mouthing the words as he was laying there."
Maria was at Ken's side every day while he was in the hospital. Even when others didn't hold out much hope for his recovery, she said she always had faith he'd get better.
"And he's such a strong stubborn German," she added.
She praises her employers at K1, who supported her throughout and told her to be with her family, her job would be waiting for her when she was ready to come back to work.
She took them at their word.
The family spent Thanksgiving 2016 at the hospital together with Ken. Then Christmas.
On New Year's Eve, before she headed off to the hospital, Maria found a letter from Ken's employer, stating that he'd been away from work too long and they were terminating his employment. The job and the insurance were gone.
"He was fighting for his life and they let him go," she said, adding that she went there and asked them to reconsider. "That's where the financial hardships kind of started."
About three weeks after the Dec. 8 disaster, the doctors moved Ken out of ICU to the medical floor and then to rehab.
"He needed to relearn everything," Maria said. "How to stand, how to walk, how to brush your teeth and hair. Basic standard things."
Ken remembers watching another patient walking by his window repeatedly, and wondering if he would ever be able to do that again. With hard work and lots of help, he was eventually making multiple trips down that hallway as well.
Ken finally got to come home on Jan. 18.
Although he was home, Ken was not well yet. An MRI had revealed that both of his hips were in bad shape, an issue likely caused by the prednisone. The condition made rehab more complicated. He had to use a walker to get around, and a walk around the block with the family exhausted him.
He had a hip replacement in May and will have a second hip replaced at some point in the future. And although his kidneys work now, he has stage 3 kidney disease.
In June, they got a letter from the company managing the home they were renting and hoping to buy, giving them until July 10 to get out of the house.
"We are the personification of a country song — everything happened," Maria said.
"Fortunately, my mother took us in," she said, of her mom, Judith Benko. "She hides her wings well under her shirt. I don't know what we would have done without her. I love her so much."
There wasn't enough space for a family of four and two dogs, however. So the dogs — one died since then — went to live with friends and Angel also stayed with a friend.
Maria and Ken were all smiles Monday. They'd celebrated Ken's birthday three days before. They'd spent their very first night in their new home the night before, thanks to a good friend who helped set them up in the home with the idea that they will take over the payments as soon as they can.
When asked, Maria can't think of anything in particular they need.
"I feel so blessed we are in a house now, I feel like we have everything," she said. "And I have him. I don't need anything else."
"A lot of people would ask me, how can you be smiling," she said. "I'd tell them, 'I hate the alternative.' But now I have things to smile about. We all do."
They hadn't yet moved in their couch, and they were not sure they'd get a Christmas tree, but it was fine.
They were together again.
And the youngest, Tony, had his own bedroom, and his dad was home and doing better.
"To have the four of us and the dog under one roof again was so awesome," Maria said. "At least we're there, and Santa has an address this year."
WANT TO HELP?
Search "pleasehelpken.com" online to find the YouCaring site for the Scherkenbach family where you can read more of their story and make an online donation.