Teen with devastating form of leukemia celebrates 15 years of survival
CARLTON - Alexis Timmer of rural Carlton is much like any other 15-year-old girl. She plays on the school volleyball team, she's about to start driver's training and she loves to go shopping. The only thing noticeable about this petite teen is he...
CARLTON - Alexis Timmer of rural Carlton is much like any other 15-year-old girl. She plays on the school volleyball team, she's about to start driver's training and she loves to go shopping. The only thing noticeable about this petite teen is her size. At only four feet five inches, her friends affectionately refer to her as "Mini," since it's unlikely she'll ever get any taller. But inside, she's got the heart of a lion.
That's because Alexis has defied all odds and gone on to live a comparatively normal life after being diagnosed with Acute Lymphoid Leukemia (A.L.L), a particularly devastating form of childhood cancer, at the age of only five months.
This July 3, Alexis and some 150 of her family members and friends will gather at the Timmer home to celebrate her life with a 15-year survivor party. And indeed, it is cause for celebration, since at one time doctors only gave the infant girl less than a 5 percent chance of living through the next 48 hours....
After suffering from a serious, ongoing series of illnesses during her first few months of life, Alexis was rushed to the emergency room of St. Mary's Medical Center in Duluth on Christmas Day, where doctors determined her white blood count was alarmingly high.
"A normal count runs from 4,000 to 10,000," explained Alexis' mother, Tracy, "and Alexis' was measured at 420,000."
The tiny girl was immediately loaded aboard a LifeFlight helicopter and rushed to University Hospitals in Minneapolis, where doctors diagnosed her condition as A.L.L.
In the months that followed, Alexis underwent a variety of chemotherapy treatments that virtually ravaged her small body, and in the end doctors determined that she would need a bone marrow transplant if she were to survive. A long wait ensued to see if they could find an appropriate donor, and though one was eventually located, he or she withdrew in the final moments before the transplant, leaving Alexis' life once again hanging in the balance.
With no time to spare, doctors suggested an experimental treatment that involved the use of stem cells from the blood in an infant umbilical cord to transplant into Alexis' system in order to enrich her weakened blood.
On July 3, 1995, Alexis underwent the procedure, which lasted only a little over two hours but resulted in an agonizing wait to determine if it would work. Within a week, Alexis contracted Graft Versus Host (GVH) disease, causing her entire body to look as though she'd gotten severe sunburn. GVH most commonly settles in the skin, liver or digestive system, and Alexis exhibited signs of all three.
Repeated treatments of steroids and a drug known as ATG were administered to combat the severe reaction she was experiencing.
In all, Alexis stayed in the hospital for a month and a half following the transplant procedure, but even after her release, she had to remain in isolation for a full 100 days. She and her parents, Mark and Tracy, were housed at the Ronald McDonald House near University Hospital so Alexis could undergo frequent testing and monitoring.
"We had to just sit there inside those four walls and watch her hurt," said Tracy.
The young Alexis didn't return home until Oct. 1, but even after that, her immune system was so fragile her parents had to keep her at home so she would not be exposed to any outside diseases.
On the afternoon of Christmas, just as the Timmer family was looking forward to spending their first Christmas all together, Alexis became very ill and had to be rushed to the emergency room and was subsequently hospitalized and put on a breathing machine.
Though she eventually rallied enough to return home, the incident was the start of frequent trips to the emergency room, and doctors were still unsure of just what was going on, since they'd seldom treated a child so young for this condition.
Eventually, however, the little girl had begun to rally.
"She did really well, started eating and really taking off," attested Tracy.
Though her speech, eating and motor skills had been delayed after spending so much time in hospitals, Alexis spent three years in preschool and started school in Carlton at age 6, though her parents found she needed something more to help her thrive.
"She required a lot of one-on-one attention, so the public school setting wasn't necessarily the best thing for her," said Tracy.
In fifth grade, Mark and Tracy switched Alexis to Cloquet Christian Academy, where she truly began to thrive.
"There was more one-on-one and individual attention and more opportunity for catch up," explained Tracy.
Alexis recently completed ninth grade and is looking forward to becoming a sophomore at the school next fall.
Thus far, Mark and Tracy said Alexis remains cancer free, but her biggest side effect has been the effect of earlier treatments on her bones.
"The radiation on her bones when she was so little had a long-lasting effect on them," said Tracy. "We didn't know about it at the time, but she has brittle bone disease."
As Alexis got bigger, she broke her leg a couple of times, both her arms and some of her fingers at various times. When she was in fifth grade, both of her hips fell out of the sockets.
"We didn't even realize it had happened," admitted Tracy. "She was limping and I kept asking her if something hurt or was wrong, but she just kind of shook it off and said she didn't really know. After about a week we finally brought her in and doctors said her hips were both out of their sockets."
Alexis underwent a medical procedure whereby permanent metal screws were drilled into the bones of her hips to meld them together into their sockets.
"They said Alexis would be in the hospital for a while, but after they did the procedure and we got back to the room," related Tracy, "she didn't need a single pain pill and we ended up bringing her home that same night! She just doesn't seem to feel things the same way the rest of us do. "
Alexis' life has not been without its struggles, however. Recently, she has begun growing benign tumors throughout her body.
"Doctors counted 32 of them," said Tracy, "and she's had two of them removed, including one on the back of her leg which she just had taken out a couple of months ago."
Last November, Alexis began to suffer from high blood pressure, dizziness, nausea and light headedness.
"At first they thought it was a brain tumor and started doing all sorts of tests on her," explained Tracy. "She does have a high chance of a secondary cancer because she's already had one form of it, and so that's what they were looking for. It was a matter of only a couple of weeks before they found out it was kidney disease, and then they began looking for an underlying reason why her kidneys would be failing. The second week of May, they put her in ICU and drew something like 70 cc's of blood to do the tests they needed to do."
The Timmers will be going to Mayo Clinic next week so doctors can do some biopsies on Alexis in order to determine how to better control her kidney disease.
After everything Alexis has been through up until this point, however, the Timmers feel this latest setback is merely a bump in the road.
"I remember they told us after all that radiation that Alexis would probably be learning delayed, but she really isn't," said Tracy. "The older she's gotten, the more she became a normal young girl. She's just amazing!"
Even Alexis' doctors admit it's hard to look for certain things in her medical condition because there just aren't that many case studies similar to hers to explain why those things might be happening. In the meantime, Alexis and her family are content to take life one day at a time.
She's about to start driver's training, so Mark and Tracy had to have pedal extensions installed in the family car as well as a seat that will elevate her high enough to reach the pedals and see out the front windshield.
Alexis recently modeled in a fashion show at the DECC during the Women's Expo as part of a cancer fundraiser, and she attends Camp Courage every summer where she has met some "awesome" friends she has kept in touch with through Facebook.
"Some of them are in wheelchairs, and I think that makes her look at herself and realize that things could be a lot worse," Tracy said. "She's the toughest little cookie I know. She's never depressed and she never cries. She's pretty much matter-of-fact about everything. She's just so strong and positive."
Alexis looks through her baby books every now and then, and though she can't remember those early years when she underwent her life-saving transplant procedure, she is nonetheless determined to become a nurse someday at St. Jude's Hospital for Children.
Though Alexis' life story is far from normal, she nonetheless leads the life of an everyday girl.
"Her friends know about her struggle with leukemia because she misses a lot of school, though she doesn't dwell on it a lot," said Mark.
"The things she's going through now are little things compared to where she was 15 years ago," added Tracy. "This is stuff we can deal with day to day. So many of the kids going through what she did didn't make it.
"He's kept her here this long for a reason...."