Dear Henry

August 2, 2008 Road to recovery By KRISTIN DANLEY-GREINER Herald-Index Staff Writer With a stranger's blood now pumping through her body, Maddie Landwehr of Altoona - who had been living a nightmare every day - is now making strides toward returning to the vibrant, spunky Maddie that people know and love. After an uplifting trip to Disney World in Florida this spring that was granted by the Make A Wish Foundation, Maddie returned home to prepare herself for the special bone marrow transplant designed to cure her of a rare genetic blood disorder she was born with called Fanconi anemia. The disease causes bone marrow failure. "Words cannot describe how wonderful that trip was for Maddie," said Ernie Landwehr, Maddie's dad. "She got to wear a special badge and when her group walked up to a ride, they put her right on it. But she ran out of gas about five hours into it and had to quit and go home. The place where we stayed, you can't even imagine it. It's a 70-acre complex with over 100 villas, merry-go-rounds, clowns; it's a whole park. Maddie said she just wanted to stay there." Her medical treatments began May 28 at the Fairview Children's Hospital in Minnesota. The chemotherapy took a toll on her small body, but when she received her new blood through an IV drip bag, the transplant only took one hour and five minutes. Maddie's mom, Nancy, has spent more than three months at Maddie's side. "Maddie's had some real ups and downs," Ernie said. "She's as bald as could be now and ended up with extensive mouth sores after the treatment - she couldn't eat or talk for 20 or so days. She just wasn't our Maddie." In fact, Maddie became so unlike herself that her doctors worried she had lapsed into depression and were going to call in a psychiatrist. Maddie also contracted graft versus host disease, which is when her body didn't accept all of the blood at first, but now she's 100 percent grafted, Ernie said, meaning her body is full of donor blood and now RH+. Unfortunately, she's been on steroids to help fight whatever sparked the infection. Maddie has been taking more than a dozen pills daily, including a water retention medication to combat the steroids' side effects, plus blood pressure medication. She also has suffered from a bladder infection, underwent a colonoscopy and has battled serious blood sugar level fluctuations mimicking diabetes, as well as fevers and hives, a combination of which landed her back in the hospital after she first was discharged to stay at the Ronald McDonald House. "The downside to the steroids is what they do to her stomach and face - she doesn't look the same," Ernie said. Then Maddie's hip broke through her skin, Ernie said. "She's retaining so much water that when she sat down, it burst out of her skin," he said. "It came open about half an inch to begin with and now it's a big open sore and not until her body heals will it heal up." Fortunately for Maddie, her family has been able to visit her in the hospital and where she's staying now at the Ronald McDonald House, except when Nancy and Ernie's adult daughter Melissa's own daughter had her measles, mumps and rubella shots for kindergarten this summer. Because of Maddie's new and weakened immune system, she cannot be around anyone who has recently received live immunizations and should avoid large crowds of people. Even when Maddie leaves her germ-free apartment at the Ronald McDonald House where only her parents are allowed to be, she must wear a surgical mask to keep germs at bay. Due to the high risk of infection Maddie faces, her physicians do not believe she will be able to return to school until late January or early February, even if everything proceeds as planned. She also must remain at the hospital for at least 100 days, doctors say, and is just past the halfway point. She isn't allowed to be more than 30 minutes away from the hospital, because she's at risk of going into cardiac arrest. It can get quite boring recovering in the hospital, but friends, family and even strangers have sent Maddie care packages, cards, well wishes and e-mails to her Web site at www.carepages.com. "Even the mayor of Altoona and his wife sent Maddie a care package," Ernie said. "She's very appreciative of what everyone's done for her." Anyone wanting to send Maddie well wishes electronically can log on to her Web page at www.carepages.com. If you are not a user, you must establish an account first. Then search for her page under MadisonLandwehr. Also, Ernie and Nancy's adult daughter, Melissa Thomas, would like to organize a walkathon for Maddie. Anyone interested can contact her at jmjcthomas@hotmail.com.