Terrell Baumler receives visit from Make-A-Wish Foundation as he battles cancer for a second time

Being a child, and raising that child, has its own set of challenges and rewards, but for five-year old Terrell Baumler and his parents, Jan and Kenny Baumler of Waukon, those challenges and rewards have been greatly magnified by not just one, but now two battles with cancer.

Following a slip and fall in a puddle of bath water in 2001, CT scans, x-rays, and an MRI revealed that Terrell, then just shy of his second birthday, had a large mass and several smaller masses in his cerebellum. Further testing resulted in a diagnosis of meladullablastoma, which is a very aggressive form of cancer.
After undergoing surgeries to remove the masses in his brain and chemotherapy at just 22 months of age, Terrell has since been in remission for his meladullablastoma.
However, in December of 2004, this otherwise typical 5-1/2 year old was diagnosed with leukemia, and is currently undergoing treatment for that disease.
A recent visit by a representative from the Make-A-Wish Foundation helped counter some of Terrell's challenges with a well-deserved reward. Saturday, Feb. 5, Terrell received his wish of a laptop computer and printer that he can take with him when he undergoes a necessary bone marrow transplant at Fairview University Hospital in Minneapolis, MN, which looks to happen sometime between mid-March and early April.
The challenge now facing young Terrell is more formally labeled acute lymphocytic leukemia T-cell, which, according to his mom Jan, is a rare form and was brought on by chemicals Terrell's body was subjected to in order to help him fight the meladullablastoma.
"It was Sunday, Dec. 5 when I first noticed the spots," Jan says of when she first noticed something wasn't right. The spots spread into a rash, and the Baumlers took their son to the emergency room. The doctors there initially thought it was a rash caused by strep throat, but when the strep tests came back negative, they thought it was a viral infection.
The next day, the school Terrell attended called saying he had a fever and that the spots had gotten much worse. The Baumlers then took their son to Decorah to Gundersen-Lutheran Clinic, where they ran some blood tests. His platelet count was abnormal, and there were so many white blood cells in his system that the machines running the tests had difficulty registering them.
"The normal white blood cell count is between six and eleven thousand," Jan explains, "and Terrell's was 593 thousand." They knew something wasn't right.
They were told he would have to go to La Crosse, WI to see Dr. Bob Ettinger, whom Terrell had seen before during his first bought with cancer. In La Crosse, Terrell went into the ICU and they took his blood out and replaced it with new blood, to get the white cell count under control. He was diagnosed December 9 with leukemia.
Like his previous cancer, this one was also aggressive in its onset. In August of 2004, blood work had been done on Terrell and everything had been fine at that point. The Baumlers had been to the doctor in November, about a week before his initial troubles this time around, and everything had seemed okay then as well.
He had been out of treatment for the meladullablastoma for about 28 months, and had been busy being a kid. Terrell was involved in bowling, dance, swimming, he'd been horseback riding, and he'd been going farming with his dad. "In hindsight, there are some things we noticed that were symptoms of leukemia, but even his doctors had said it (the symptoms) was probably just from him being a kid," Jan says.
In addition to taking out his blood and replenishing with new, Terrell also immediately underwent intense chemotherapy in his spine to control the white blood cell count. He is currently in what the Baumler's call Phase III, which dad Kenny says is the final phase before Terrell undergoes his bone marrow transplant.
Kenny is currently taking Terrell to LaCrosse twice a week for chemo. The chemo is necessary to destroy as many of the leukemia cells as possible, and will hopefully give the new cells that will be introduced during the transplant a chance to graft. Jan describes the term grafting as the body taking in new cells. "He's been handling his treatments very well," Jan notes.

MORE THAN JUST TREATMENTS
Because of his chemo treatments and his immune system being weakened, Terrell has had to quit all his activities, including school and dance. His younger brother, Emanuel, age three, also had to be taken out of school and activities. They can't risk any exposure to infections. It was a hard thing to do, but as Kenny says, "You just have to do it." Jan adds, "We had to do what was best."
Terrell mostly stays at home, where he plays outside a lot and plays on his new computer. When he isn't home, he is either going for treatments or the family might take a drive together, just to let Terrell have a change in scenery for a while. One of his instructors from school comes twice a week for 45 minutes to help keep Terrell on track, education-wise. The Baumlers are hoping he can start kindergarten next year.
He has adjusted very well, and Jan says that he understands what is going on. "This time, he can communicate with us. He understands what is going on. If he feels tired, he knows he needs to rest, and he does," Jan explains.
"The doctors enjoy him being up there," Kenny says of Terrell's trips to LaCrosse, and the Baumlers say Terrell looks forward to seeing "Dr. Bob" and the staff. He really seems to enjoy spending time at the clinics and in the hospital, although, like anyone, he has a few bad days.
Terrell has a two-line Hickman catheter in his chest, which is used for treatments and some blood work. It will also be used for the bone marrow transplant. The Baumlers have to flush the lines daily, which they can do at home, and Terrell understands what is going on and is okay with it. Right now, the Baumlers can do most things in La Crosse or at home.

CHALLENGES YET TO COME
The bone marrow transplant will be the biggest step, especially with a 200-mile drive, one way, to Minneapolis. None of Terrell's family members were a bone marrow match, so his new bone marrow will be coming from someone on the organ donation registry.
After Terrell receives the transplant, he will stay in the hospital for an estimated six to eight weeks. From there, he will go into a "safe environment", which Jan explains is a place, like a Ronald McDonald house, that is close to the hospital. He could be there for two to three months before he can come home.
Kenny notes that it is very hard to say how long Terrell will be in the hospital or safe environment because it really depends on how Terrell's body responds to all the treatments and transplant. Hopefully, six months to a year after the transplant, Terrell can be back in school and in the activities he loves.
After the transplant, he will also be off the chemo. He can't stay on it very long, because there is always the chance that it could cause problems again. There is also a chance of rejection. "If the cells don't graft, then the doctors will have to go back to square one," Jan explains. Terrell will have to take anti-rejection drugs, and if his check-ups go well, he will be able to gradually decrease his meds.
Currently, Terrell is in a unique situation, as he is on two different protocols, one for meladullablastoma and one for leukemia. According to Jan, that is a pretty unusual situation, but she also says that if he would have a recurrence of either disease, he will be taken off the protocol. Kenny describes a protocol as a description of the treatment Terrell is on for each disease, and every protocol is different for every patient.

A WISH COME TRUE
Saturday, February 5, Terrell received a very special gift from the Make-A-Wish Foundation when an area volunteer with the organization, Martha Kane, paid the family a visit. He was given a laptop computer with a wireless printer, and a John Deere computer game, among other things. He is crazy about John Deere tractors.
"The Make-A-Wish Foundation contacted us in 2001, but we put it off until he was a little older," Jan says, adding that the day after they got home from the first eight days Terrell spent in La Crosse this past December, the foundation contacted them again. The Baumlers decided it was time.
Terrell actually had two wishes, the computer and to go to Waterloo to see a real John Deere tractor being put together. The foundation could only grant one wish. "I asked Terrell, 'which do you want?' He said, 'I want a laptop to take with me to Minneapple' - his word for Minneapolis," Jan says.
Terrell has been busy enjoying his laptop and printer. When he is not busy running and playing, he is playing computer games like, Franklin (the turtle from a popular kids show), and printing off pictures from his computer, which can also play DVDs and CDs.

COMMUNITY SUPPORT
Jan says that the support from the area people, churches, and Terrell's classmates and dance classmates has been amazing. They are always receiving cards from someone, and Jan keeps the cards for Terrell in a big box. When he is in Minneapolis, the Baumlers are planning on setting up a website so that interested persons can leave messages on a message board and be updated on Terrell's progress. His prognosis is listed at a 50-70% success rate.

A breakfast to benefit Terrell Baumler is being held at the Knights of Columbus Hall in Waukon Sunday, Feb. 27 from 7 a.m. to 12 p.m. Also available will be an order form for those who would like to order a "Terrell's Support Team" t-shirt. More information will be made available in the next couple weeks.