By Renee Wahlen Tillema
This is the story of two little girls with a similar diagnosis – leukemia. While the disease may be the same, their stories are as individual and unique as each child and their family. There is no one-size fits all prognosis because each person is an individual. Everyone reacts differently to medication, each person has their own pain threshold, and every family needs to find their own way to deal with the news that their child has cancer.
These two young girls have spent half their lives in need of medical treatment. Doctors, nurses, and oncologists are like family members, and hospitals are like second homes. This is what they know and this is what they need to battle the disease of leukemia.
They are definitely fighters and are two tough little girls. They are out to beat cancer and their families are there to walk with them every step of the way.
It was the end of June in 2010 when the Raasch family noticed that four-year-old Ava was looking ill and just not acting herself. They noticed that Ava was crying as if she was in pain and one evening Ava had problems walking, she suddenly became very clumsy. Her parents, Kari and Mike, took Ava to the hospital where blood was drawn for tests.
“We were told to come back for the results,” Kari said. “We did and were told that they were really bad – they told us we needed to get down to Children’s Hospital and we practically flew down there.”
Once at the hospital, this family from Juneau waited for news of what was happening with their daughter. During the waiting period, many different scenarios were going through Kari and Mike’s minds. Finally, they were told the diagnosis was leukemia, but the type was not yet known. Ava was given blood and moved to the ICU where she stayed almost two days. Further testing revealed that Ava had acute lymphoblastic leukemia or ALL. The family was told that the next two and a half years would be consumed with treatment to rid Ava of this disease.
“Once her numbers reached a certain point, they moved her to the HOT unit, which is hematology, oncology, treatment floor,” Kari said. “We stayed on that floor for awhile, she had platelets, more blood, a spinal tap, and that’s where her treatments started.”
Ava was officially diagnosed with ALL on June 29 of 2010 and her treatment began almost immediately. Her chemotherapy began with treatments twice a week, which were stretched out to once a week, and then every other week. In January of this year, Ava began maintenance and a once a month treatment schedule. It has not been an easy few years. Ava has been in and out of the hospital with fevers, infections, illnesses and other complications.
“The treatments will hopefully be done in September,” Kari said. “She’s been a tough little girl through all this. She went through a period of about eight months of throwing up; we didn’t know what was going on. And we don’t know if the chemo is just getting the best of her now. When the maintenance is over, we’ll have to keep going back so the doctors can wean her off all of the meds. They won’t say she is in remission until after she is done with the chemo.”
Kari said Ava has her good days and those that are a little more difficult.
Ava will be celebrating her sixth birthday in August. Kari said they hope to go camping this summer and spend as much time as possible together as a family while Ava is feeling good. Until her maintenance treatments are finished, the Raasch family has not been given a long-term prognosis. Kari said they take it all a day at a time – one foot in front of the other.
“People comment that I’m always smiling and positive,” Kari said. “You have to be, I know she has bad times, and there are times I’ve cried myself to sleep, but I have to believe in her and pray. It’s sad to see a little girl go through what she has gone through, especially the pain.”
Kari works in sales for The Booster, while Mike owns Expedition Supply in Hartford and Beaver Dam. With family in the area and strong roots in the community, Kari and Mike understand how important supportive family and community have been during these last few years. Kari’s dad has accompanied them to many doctor appointments and other family members have pitched in to help as needed. Ava has a big brother, Kegan, who is nine-years-old. Many times when one child is ill, it can be very hard on the other siblings. Kari said that Kegan cares deeply for his sister and it scares him when she is admitted into the hospital. It can also be challenging to meet the needs of all family members when one is sick.
“We are very thankful for all the people who have helped us,” Kari said. “We had a fundraiser at the bowling alley in Hartford. We’ve had other organizations donate items and financial support and Ava’s daycare is raising money to build a playhouse castle for her.”
“We’ve met a lot of wonderful people at the hospital,” Kari said. “Ava said she wants to help treat people when she gets older. Hopefully she will stay in the field. It’s kind of neat to see what an impression they have made on her; they really made her feel a part of them.”
Ava’s experience has opened Kari’s eyes to the importance and the power of community support and the local fundraising efforts.
“Before this I hadn’t supported anything, I guess I didn’t think it would affect my family,” she said. “But, when you are in the situation you don’t realize what need you might have out there. Now, if there is something I try to let people know, a little here and there, it all adds up in the end. Even if you can’t do anything dollar-wise, you can volunteer time. It’s really neat that people go out of their way to make a difference.”
Just a few months later in a different city, another family had a similar experience. Starting around the middle of August 2010, 27-month old Charlotte Elske started to become more fussy than normal. At first her parents, Lon and Amy, thought it was just teething. Suddenly she began to have “clingy episodes” in which she would be playing by herself and suddenly start crying and want to be held. The cry was one her parents had never heard before and she was not easily consoled. At first these episodes were not consistent, happening every two to three days, but then they started occurring daily and sometimes more than once a day.
“We took her to the doctor and found she had an infection in her right ear,” Amy said. “She was on antibiotics and medicine for the pain. When the pain medicine was stopped, the clingy episodes came right back. We went back to the doctor and this time the doctors paid more attention to the bruises that she had on her legs, and thought she looked paler than last time. They did blood work and within an hour we were told her platelet count was dangerously low.”
After receiving the news, this Columbus couple spent the first night thinking their daughter had ITP, which is a fairly common blood disorder that occurs after a virus and causes a person’s antibodies to attack the platelets. Because Charlotte’s hemoglobin count was a little low, her doctor wanted to get a bone marrow sample in the morning and take a closer look.
“That’s when they said she had leukemia,” Amy explained. “She was immediately transferred to American Family Children’s Hospital. We went to bed that night thinking she had ALL which is a more common form of leukemia with a 90-percent cure rate. Then on September 11, 2010 we were told she had acute myeloid leukemia (AML), a more rare and serious form of leukemia.”
Further testing revealed that not only did Charlotte have AML, but she had a subtype of M7, which is even rarer and usually found in children with Down Syndrome, which Charlotte does not have. The cytogenetics test came back that she has “complex cytogenetics,” which usually means an even lower prognosis and a tough road ahead.
Charlotte’s diagnosis shares the same name of leukemia, but it is a different type. Because the AML type is so aggressive, Amy and Lon were told that Charlotte’s chemotherapy would begin as soon as the pharmacist could prepare the medications. The overall success rate for AML is not as high as the ALL cancers, but still about 60%. While the chemotherapy treatments were very aggressive, Amy and Lon found out that their options were very limited. Left untreated, they were told the leukemia would kill Charlotte within two to three weeks.
During a break between rounds two and three, Charlotte’s sister Molly was born. It was a bittersweet time trying to balance the joy of a new birth with the emotions of dealing with a sick child. The option of a bone marrow transplant was discussed, and while this would improve Charlotte’s prognosis, it was not without risk. Amy explained that 25-percent of people do not make it through the transplant process.
“Even though Charlotte was responding very well to the chemo, because of the AML, the subtype and the cytogenetics results, they felt the leukemia would return once the chemo was stopped,” Amy said. “A bone marrow transplant was discussed and they tested Molly to see if she would be a match, but she wasn’t. They still felt strongly enough that the leukemia would return, so Charlotte had a bone marrow transplant from an unrelated matched donor.”
The Elske family celebrated Charlotte’s one-year bone marrow transplant anniversary this March 11. With the transplant, Charlotte’s treatment was complete. She continues to have blood tests run, but as of her one-year after transplant mark, Charlotte is off all medication. She has some issues with graft-versus-host disease, which is a common complication following a transplant.
“With the AML, the best they could tell us was 50-50,” Amy said. Lon added, “The AML is much more common in adults. There are about 500 cases of pediatric AML diagnosed each year and then with the subtypes, the M7 is so rare, our doctors believe there are less than 10 kids diagnosed each year with M7 that do not have Down Syndrome.”
Charlotte recently celebrated her fourth birthday and is looking forward to starting school this fall. Amy said that while Charlotte handled the whole experience “wonderfully,” she has been asking more questions about her past illness. She has been very accepting of all the medical experiences she has had to endure. Charlotte loves dogs, playing outside, is very inquisitive, and is a great big sister.
With a sick child and a newborn, Amy and Lon said the help from family, friends and neighbors was invaluable. Grandparents pitched in to babysit, neighbors mowed the lawn and shoveled sidewalks, friends, and even strangers, hosted benefits and sent cards letting the Elskes know they were being supported and prayed for. Lon works for a computer consulting company and Amy works part-time as a social worker. Their respective employers were supportive and understanding of the time Amy and Lon needed to spend with Charlotte while she was in the hospital.
“It was just random, wonderful support we received,” Amy said.
Ironically, Lon had been on the bone marrow transplant donor registry since 1996. Through Charlotte’s experience of needing an unrelated donor, the Elskes encourage others to be added to the registry. All it takes is a cheek swab and a commitment to help save a life. Kits can be requested through www.marrow.org. Amy also mentioned the opportunity for new parents to donate umbilical cord blood. This is an option for expectant women to research.
“That has become our mission- to get people aware of the registry,” Amy said. “It’s scary how many people just end their battle because they don’t have a match, and it’s just such a simple process to save someone’s life.”
In their search for answers, Amy and Lon did not find much information on AML-M7. As a way to help other parents, they started a blog (http://cjelske.wordpress.com) to document Charlotte’s story and provide more information to others.
“Those first few sleepless nights in the hospital we didn’t know what the future held,” Lon said. “There are few websites about her disease and not a lot of success stories. Our blog was not always happy, it made people cry, and it made us cry when we wrote it. We expressed a lot of our feelings and a lot of our fears. We spent a lot of time looking for information and for success stories, so we made it a goal to bring this out there for people.”
These two tough little girls have become formidable opponents against childhood cancer and inspirations to all those who know them. Their families have become a beacon of hope for others facing a similar situation, leading the way through the sharing of their own experiences.