Osgood family blessed with trip
Jennifer Rogers - Intern Writer

Kalena Holland, 4, along with her parents, John and Kathy Holland, and her cousins Tony and Marie Bien, have just returned to their Osgood home after traveling to Orlando, Florida on a Wish Upon a Star trip.

Kalena has battled many health issues since she was six weeks old. She has been on too many medications to count, she has had numerous surgeries, and doctors still have not come up with a clear diagnosis.

Kalena traveled to the Give Kids the World Resort in Orlando, Florida with her mother, father, and two cousins from May 16-21. Her dad said, "This trip was truly a blessing." The family flew down to Florida, and when they arrived in the airport they were greeted with a sign that welcomed Kalena's family. The people who were there to meet them even took care of claiming their luggage.

The Hollands stayed in a two-bedroom condo in the Give Kids the World Village. The condo was completely furnished with sheets, towels, soap, and even food. The 51-acre village has constant entertainment, swimming pools, plenty of food, horseback riding, and an amusement park.

During their trip they went to Walt Disney World, Universal Studios, and Sea World. Kalena was able to meet every character one on one, get their autograph, and have her picture taken with them. She was excited to see all the characters, but her very favorite was Barney, and she gave him a big hug. "She loves Barney," her dad commented. In her house, Kalena has a Barney lamp on top of the television she watches, and an entire shelving unit full of Barney videotapes. Mr. Holland said that he makes trips to the Goodwill stores in the area to find all the Barney items he can for Kalena.

The Hollands traveled with other families from the tri-state area, and one day the whole group was taken to the Rainforest Café to eat, where once again, no one paid a cent. On another occasion, Jan Kemp, the Wish Upon a Star Director, took everyone to the beach, and even provided drinks and snacks in a cooler, and floats for all the kids.

Mr. Holland first found out about the Wish Upon a Star program on the Internet. He sent an email to the address listed on the site to request more information, and in less than two weeks he received information about the program. Kalena's doctors filled out some papers, and they were approved to be part of the program.

Wish Upon A Star is a not-for-profit organization based in Evansville that grants wishes for children between three and seventeen who are terminally ill and/or have life threatening illnesses. To date Wish Upon A Star has granted 189 wishes.

Kalena has battled many health problems throughout her life. She was born healthy, but when she was six weeks old she developed a lump on her back, and she began having fevers around 103 degrees. Doctors call this condition periodic fever syndrome, and the fevers would last for days at a time. She also suffers from inflammation within her muscle tissues (JRA). During her life so far she has had six spinal taps and even bone marrow scopes. Kalena is also severely anemic, which makes it almost impossible for doctors to find a vein to take blood from, or give an IV through.

Kalena and her family have been to the National Institute of Health in Washington, D.C. five times for extensive research on her health. The NIH is the head research center for the entire country. When she goes there the same tests are run every time to detect any changes in her health. In her first visit to the NIH they found that she didn't have her full capacity for hearing. When Kalena was one year old she went deaf.

Kalena and her family learned sign language. Her father said that she picked it up very quickly, and even remembered some of the signs when her parents would forget. Kalena taught her cousins many of the signs so they could communicate with each other. Mr. Holland had heard about cochlear implants as a possible solution to Kalena's deafness, so he did more research on the Internet. He got the process started and had Kalena checked at the Children's Hospital to determine if she would be a candidate.

When she was a year and a half old a doctor at the Children's Hospital performed the surgery. John said the implants cost $80,000, but he went on to say, "I don't care if it costs a million dollars, it is worth it for me to say Kalena and hear her answer." Kalena can now hear as long as a special magnet is placed on the back of her head. She can't wear the magnet to sleep, and it can't get wet, so she still uses sign language in those instances. After the implants were in, she had therapy to learn how to speak again, and to use her hearing.

The Hollands took Kalena back to the NIH when she was two and a half years old to have her eyesight checked after Children's Hospital noticed some far-sightedness, a change from only three weeks earlier. After an extensive exam at the NIH the family was informed that the rods and cones in Kalena's eyes were deteriorating very quickly. She was already blind in the dark, she had no peripheral vision, and she only had 10% of her normal vision.

In an attempt to clearly diagnose Kalena's situation, doctors sent results of all of Kalena's tests and all her previous medical information out to doctors worldwide over the Internet. Not one response came back with any information on Kalena's condition. This proved to her father that "she is one of a kind."

Doctors have diagnosed her with Usher Syndrome because of her hearing and eyesight problems, but her conditions don't exactly match any of the three types of Usher Syndrome. Not one other person in the entire world has exactly the same condition that Kalena has. Her dad said, "Everything she has is uncommon. She doesn't fall under any specific category."

Kalena wasn't born with tonsils or sweat glands. Without sweat glands, she can't be outside in the heat for long periods of time because her body can't regulate its temperature. She also has Immunodeficiency, where her immune system doesn't function with both B and T cells like most people. Kalena wasn't born with any B cells, and she has very few T cells. Kalena also has ectodermal dysplasia, where she gets very painful, large sores on her body.

From October 2004 until February 2005 Kalena had constant stomach problems. Her stomach would become inflamed, and when her parents took her to Children's Hospital, the staff there said she had "the worst ulcers they had ever seen." Now, a specialist in the gastro department at Children's Hospital is controlling her stomach problems. She also sees specialists in the Rhumatology and Immenology departments on a regular basis.

Kalena receives IVIG transfusions every three weeks for four hours at a time, and she has been receiving these treatments since she was nine months old. Kalena goes to The Hansen Center in Batesville every eight weeks for Remicade infusions. At first she would receive her infusions through needles in her stomach, then they started putting the needles in her legs. Because she is anemic, doctors can't find veins to take blood from, or use any IV's, so in February of this year, Kalena had surgery to put a port in her left shoulder. She now receives her treatments through the port, and it also makes it much easier for doctors to take blood, and give her medicine.

On June 28, Kalena has an appointment at Children's Hospital to have her eyes examined. They will diagnose any changes from the last exam she had. Her dad said he has been noticing her vision getting worse, so they are waiting to see what the doctors will say this time. Kalena's dad has already been collecting materials, and working with her on learning Braille. He said she runs her hand across the letters to get used to the feel, but they haven't started teaching her the exact letters yet. She goes to R.O.D. during the school year, and the teachers there have plans to teach her letters and words when school starts in the fall.

Kalena's dad said that one reason his daughter likes Barney so much is that she can see his big purple figure easily on the television screen, despite her loss of vision. She looks at him on lamps and other items in the room too. She knows every Barney video they own by heart.

"We go to Children's (Hospital) non-stop," said John. In one year, Kalena was in Children's Hospital for overnight stays at least 30 times. Her dad kept track of the mileage, and said it was over 19,000 miles just traveling to the hospital in that year.

Looking back on the week they spent in Florida, Mr. Holland said, "It was the trip of a lifetime. They went out of their way for every little detail." He was so thankful to the Wish Upon a Star program for sending them on such an amazing trip.

Kalena's family would like to say a special thank you to the Wish Upon a Star program and Director Jan Kemp, the Give Kids the World program, and First Steps with Eileen Eicher and Angie Meyer.

SUBMITTED PHOTO

Kalena Holland, 4, is nestled between characters Minnie and Mickey Mouse with her family pictured with her: parents, John and Kathy Holland, and cousins Tony and Marie Bien. They traveled to Orlando, FL recently where the little Osgood girl enjoyed meeting her favorite Disney characters.