Six years after being diagnosed with pre-leukemia, rural Hartland boy to be honored at Freeborn County Relay for Life
ALL SMILES — David Malakowsky and children Dylan, Tiara, Dacoda and Tylar at a recent ice cream social for the Freeborn County Relay for Life. (Star Eagle photo by Kathy Paulsen)
By KATHY PAULSEN
Staff Writer
While sitting at the Albert Lea Relay For Life Ice Cream Social recently, my eye landed on a young boy sporting an NRHEG Panthers T-shirt and his siblings. It was a chance, enlightening experience that won’t be forgotten.
Visiting with the David and Amanda Malakowsky family, which includes Tiara, Dacoda, Dylan and Tylar, was a joy. What a happy, outgoing family that has had more than their share of problems. But in spite of it all they keep smiling.
The biggest smile was from 8-year-old Dacoda, who at 2 years old was diagnosed with pre-leukemia that required a bone marrow transplant that came all the way from Germany. David said that was good place to come from because their ancestry was German and Dutch.
Dacoda’s illness started about Father's Day in the summer of 2008. His parents thought it was complications from a fever, loss of appetite, or change in disposition because of teething. When things didn't improve, his concerned parents took him to Urgent Care in Albert Lea. There he was diagnosed with pneumonia, but his doctors still felt something else seemed to be wrong. Later that day he was taken by ambulance to Rochester. There the doctors thought that Dacoda had Epstein Barr virus, better known as mononucleosis.
While Dacoda was at St. Mary's Hospital he received three blood transfusions and doctors discovered his spleen was enlarged and considered removing it. David and Amanda told the doctors their main concern was for Dacoda to recover from his current problem.
Doctors continued to run tests and monitored his spleen but thought Leukemia was also a possibility and ordered another test. The bone marrow biopsy showed Dacoda had Myelodyplastic Syndrome Monopsony 7, a rare blood disease, a pre-leukemia condition. Doctors felt a bone marrow transplant would be necessary, telling the family if the condition was left untreated it would develop into leukemia.
Amanda shares, "When we found out about the disease Dacoda had we learned that about one in a million get it, but within that year we heard about three people that had the same disease, including a child who was only 18 months old. I did settle down a bit after I was able to see that little survivor. The other two people we heard about from family and friends were adults."
"Dacoda’s favorite food during that time was mashed potatoes and they still are," said Amanda.
While in the hospital he also enjoyed Ranch Doritos, chocolate milk, root beer, rice crispy bars, and Little Debbie snacks, all high in calories. It helped prevent him from having to be fed with a feeding tube. Later they had to start feeding him some healthier foods, which helped his body start healing. Dacoda later started drinking Ensure.
Amanda said it was interesting to note that some doctors wanted to start using a feeding tube but the head doctor wanted to wait because he felt being Dacoda was still eating good foods.
Dacoda was also able to receive all the high dose treatments within one week, compared to other leukemia patients who can take months or years to complete.
For weeks Dacoda underwent blood test after blood test to confirm the diagnosis. He was finally able to go back home but had to return to Rochester twice a week so doctors could do more blood tests and check his spleen. Dacoda continued to improve and the visits to Rochester were cut back to once a week. Dacoda’s spleen started decreasing in size, but his blood tests continued to show that things were not quite right — but yet they were not bad enough to warrant more transfusions.
The doctors continued to monitor his progress, but while the family was preparing to attend the Farm & City Days parade that year Dacoda had a serious setback when he suffered a seizure. The family was terrified. David said it was a sight you don't ever want to see. Dacoda had trouble breathing and he looked purple in color. A 911 call quickly had him on his way to Albert Lea. En route, his temperature reached 103 and he suffered a febrile seizure. Once doctors determined what they felt the problem was, they hesitated to tell David and Amanda what was happening with their little boy in front of Tiara and Tyler.
Following a review, David asked doctors to send Dacoda to Rochester. The Malakowskys left for Rochester at 6 that night. After the tests were completed at 12, they started the long ride home still unsure of what was all going on regarding their son’s health.
During a checkup it was discovered Dacoda had a very low blood count and doctors felt they needed to test him for internal bleeding. Because he was so small and scared, he wasn't laying still enough for the test so the doctors had to sedate him. David and Amanda were informed the procedure would increase his activity level, and he would more than likely not be able to walk since he would be unstable.
The doctors were right. When Dacoda tried to walk, he looked like he was drunk and they had to keep a close eye on him. Later that night he almost walked right into a wall, and remained hyper for several days.
Dacoda had to undergo many more checkups and tests and Amanda observed how brave her little boy had become. Amanda remembers how this plucky little boy amazed them all as he would routinely hop up on the exam table and hold out his arm, like "Here I am, let's get it over with," though he didn't like it much.
August came, Dacoda was making great strides in his recovery and doctors were beginning to wonder if their diagnosis of MDS had been correct. By September his checkups were reduced to every other week, and by mid-October they reduced them to every three weeks.
Tests were done for a bone marrow match from his siblings. The Malakowskys were disappointed to learn they did not qualify as donors. In November they received word that an anonymous donor match had been found. Dacoda had to have a central line, or a "Hickman," put in his young body. The Hickman meant Dacoda would not have to under go all the needle pokes to his little arms, but as with all good things, there is always a negative; he would have more chances of infections.
Shortly after Christmas he was scheduled for another bone marrow biopsy so doctors could confirm the MDS, as well as check to see if the leukemia had returned. David and Amanda learned that the doctors would know if the bone marrow was working in approximately 21 days. Dacoda would once again have to stay in the hospital, this time for at least 30 days.
Dacoda’s transplant was scheduled for January 15, but doctors had to wait until the next day because the flight from Germany that contained the bone marrow was delayed. Dacoda was medicated so he slept through it all. Doctors hooked up a blood pressure machine, which allowed them to frequently check his temperature in case his body started to reject the transplant.
It was interesting to note that most recipients of bone marrow have some donor in them, but doctors still do blood tests, which shows much donor marrow Dacoda has. Close to the time of his transplant this little boy had 100%, but within that first year he only had a tiny amount; now he has more donor again. Doctors don't know what is causing the change but feel Dacoda is a unique case, one of a kind. Because Dacoda was losing most of the donor cells, doctors gave him a boost of cells from a another donor nine months after the transplant, as well a graft. This required him to be given steroids.
Before all these problems occurred, Dacoda had two dimples, but because he gained weight so fast they disappeared and only one dimple remained after he lost the excess weight again. And if all that wasn't enough the doctors and family worried about the N1H1 swine flu virus that was affecting so many people at that time.
Once Dacoda was released from the hospital the Malakowskys went to McDonald’s. Not to eat, to stay at the Ronald McDonald House in Rochester. The first 100 days after the transplant were critical. They had high hopes Dacoda would be home to celebrate his 3rd birthday on May 10, which that year also happened to fall on Mother’s Day.
Dacoda was a little upset when it was time for school bells to ring that fall when his older siblings were able to get on the school bus. Dacoda wasn't able to start preschool because the steroids lowered his immune system. He was allowed to start preschool in January and many said he had developed into a miniature linebacker because he gained so much weight following his transplant.
Dacoda has felt some side affects of the radiation. One is cataracts, and he had surgery May 2 this year. By the time he was to scheduled to have the second eye surgery, on the 16th, he knew what was going to happen and didn't put up a fight. He has good vision again, and only needs glasses for reading but wears them most of the time. The side effects of radiation don't seem like much compared to what we already endured.
The Malakowskys have learned many things about this dreaded disease and are still learning. Because Dacoda was so little when he was having these treatments his permanent teeth that were exposed to this treatment were damaged, even though he wasn't losing teeth yet. His teeth have short roots and the teeth are smaller than normal, and may not have the enamel on them.
It is hard to fathom all that Dacoda has gone through since he became ill six years ago. He has had the support of his mother and dad, siblings, plus family, friends and others who have helped in this fight against cancer. Now 8 years old, Dacoda is one happy, busy boy who has the biggest smile.
Dacoda has been playing basketball since kindergarten, and summer baseball since preschool. Last fall he decided he wanted to try wrestling and Amanda reports he loved it and wants to do again. Even though he lost his matches, he would still smile. His mother told him he just needs more practice and it didn't matter to her how he placed, as long as he was learning, having fun and making friends. Amanda said that often parents of kids he wrestled helped coach him as they wanted him to succeed.
Dacoda is your typical boy. He likes Mickey Mouse, cars, and still loves Disney things. One year after he got out of the hospital the Malakowsky family headed to the Twin Cities where they boarded a plane for Florida so Dacoda could meet Mickey Mouse, which was his "Make a Wish" come true.
This year Dacoda is a Clover Bud member of the Hartland Hi-liners 4-H club. Next year he will be a regular 4-H member and is looking forward to showing cattle of his own. This year he needed an adult’s help to walk the animals. He helps bottle-feed the dairy calves. He likes to help around the farm and enjoys being able to ride on the tractor and big trucks. He enjoys playing outside and all the things a boy likes to do, including jumping on his grandma's trampoline, reading books, playing video games, or doing things on the iPad.
The Malakowsky family is very thankful they were able to receive some financial support towards Dacoda’s medical procedures. Each year the family makes plans to participate and support the Relay For Life in Albert Lea, which this year will take place on August 8 and 9. This event helps to raise awareness and support for research, clinical tests, a call center for patients, a visitation program for breast cancer patients and free lodging for patients undergoing treatments.
While signing the register and the luminary bags used to light the way for those who walk to support the event, one cannot help but think, "Here I am where I might not be." Thoughts go out to those lost, but also to all those who work so hard so others will be able to "Finish The Fight," which is this years' slogan.
Dacoda is a child that, when you say his name, he will most likely turn and look at you with a big smile on his face, which helps put a smile on your face.
Even when Dacoda goes to the Mayo clinic, he has a smile on his face when he checks himself in for appointments, even if he is there for blood draws.
The Malakowskys have come up with the saying for this spunky little boy: “Cancer is not contagious, but Dacoda’s smile is.”
The American Cancer Society Relay For Life represents hope that those lost to cancer will never be forgotten, that those who face cancer will be supported, and that one day cancer will be eliminated, so people like Dacoda may continue to smile.