The year 2009 started out with promise of fun and exciting things to come in the new year for a rural West Union, Iowa family. Loran and Brenda (Nagel) Steinlage along with their three children, Kelli (13), Rolan (12), and Kassi (9) were planninga summer trip traveling throughout the United States visiting farms and families they had conversed with over the internet. Little did they know how their plans would change drastically.
Rolan was coming off a rough start to Middle School. He had eye surgery in September to correct an eye that seemed to wander. The doctors had tightened the eye muscles and hoped that had taken care of the problem. Missing a week of school seemed to overwhelm him and he had a hard time catching up. Misplaced assignments and forgetting where he put things seemed to plague him. Rolan had always been a good student, so his parents thought, after talking to other parents of kids in his class with similar problems, maybe puberty was getting the best of him. On top of that, they were noticing that he seemed to want to sleep all the time. It was not unususal for him to sleep from 7 pm to 7 am. Rolan was always an easy-going type and played the peacemaker with his friends. Therefore, when slightly more aggressive behavior showed up his parents hoped it was just a phase. His parents met with his teachers and set up a game plan to get Rolan back on track.
The Monday after Christmas school break, Rolan woke up with a headache and upset stomach. For the next three days he fought with an overwhelming headache. On Wednesday morning Rolan seened to be getting worse. Loran took Rolan to the clinic in hopes that one of the doctors there could squeeze him in. He ended up in the emergency room where they ran tests and ruled out meningitis and other causes. The doctor ordered a MRI for Tuesday when the mobile unit would be available. After going home with an uneasy feeling they thought they would have to wait it out. Then under the advisement of a friend more than 1,000 miles away and their own parental intuition not to wait, they took off for Iowa City Chidren's Hospital, two hours south of them. The hope was to get an MRI done sooner. Not knowing where to go for sure, they walked into the hospital only to have Rolan vomit all over the floor. With the help of a nearby maintenance man, Rolan was taken to the emergency room on an in-hospital ambulance.
A CAT scan confirmed a mass on the brain, but there was so much fluid around the brain, it was hard to see. He was immediately taken to surgery. They placed an external drain in and released the pressure built up by the fluid. His parents were told that the earlier vomiting was the start of a seizure and that had Rolan went to sleep that night there was a good chance he may never have woken up. Unknown to his parents at the time was that the doctors only gave him a 20% chance of coming out of surgery alive. Rolan went into surgery that night repeating the "Lords Prayer".
So the journey begins...
For nearly a week there was a series of tests done, all the while no real conclusive answers as to what was really going on. On January 15, 2009, the doctors went back into surgery to place an internal drain and do a biopsy. The placing of the drain was successful but they were only able to get a few scrapings from the mass. They had hoped to take as much of the mass as possible, but found it to be in an inoperable area. Next came the wating for the pathology report, with a very sick child, who in every other aspect looked and acted completely healthy. Only those very close to him noticed that he seemed weak on his right side and that at times he was seeing double or blank spots. Short-term memory was affected, as he could not seem to remember things, until prodded to remember. He often repeated a word over and over and said whatever popped into his head. This sometimes had some embarrassing moments for his parents. However, the doctors assured them that this was a result of the tumor. His dad started giving him excercises in remembering things and reminding him to use his right hand to do things. His never-ending optimism and camaraderie with the doctors and nurses was something to behold. He had a standing rule that any nurse or doctor that entered his room had to tell him a joke. He also assured more than one of his family that he had nothing to worry about as he was confirmed in the church and God would take care of him. Finally, on January 21, 2009, the pathology reports were back. The diagnosis is a pineoblastoma.
A pinoblastoma is a very aggressive primary brain tumor that develops in the pineal glan. The pineal gland is a small cone-shaped organ located midbrain. The pineal body secretes melatonin, a homone that regulates moods and the sleep-wake cycle in humans. Pineoblastomas are considered highly malignant. They may invade the nearby brain tissue as well as spread to the cerebrospinal fluid, although rarely metastasize to other parts of the body. They also sometimes cause bleeding into the ventricles of the brain. Pineoblastomas are extremely rare, accounting for only 0.5 - 2% of childhood tumors of the central nervous system. About 2,200 children below the age of 15 are diagnosed with malignant tumors of the brain and spinal cord each year in the United States, 10 to 40 of these cases are diagnosed with pineoblastomas. Pineoblastomas occur almost exclusively in younger children, with very few cases reported in adolescents or adults. Children 3 years and older are often treated with surgery to remove as much of the tumor as possible, followed by radiation treatment of the entire brain and spinal cord. Those considered to be of poor risk may be given chemothereapy. The prognosis for children with pineoblastomas is poorer than other types of brain tumors, in part due to the difficulty of complete removal tumor due to its location on the pineal gland deep within the brain. The overall survival rate of children with this type of tumor is 50 to 60 percent, but is much lower in children younger than 3 years and in older children who do not respond to radiation therapy. Recurrent pineoblastomas are almost always fatal; there are no effective therapies for the tumor as of the early 2000's.
As for Rolan, his school problems with memory, moods, sleep problems, and behavior have been addressed, the tumor was the cause. They found no signs of the cancer in the cerebrospinal fluid and he has always been a relatively healthy child, both are pluses for him. The first line of treatment took the form of 31 days of radiation therapy and one day a week chemotherapy. They shot his tumor and spinal cord for 15 days and then just the tumor for 16 days. With daily treatments and other forms of therapy, not to mention in-hospital school, Rolan and his Dad spent Monday thorugh Friday at Ronal McDonald House. In the afternoon, they tried to do a little sight seeing, learning how other farm operations work and met many interesting people. Mom, Brenda stayed home with Rolan's sisters and overlooked the day-to-day operation of her salon, The Edge FX, then traveled to Iowa City on Wednesday for his chemotherapy treaments and spent the night with them. Kelli and Kassi spent those nights with their aunt and uncle in West Union, to maintain their busy after school schedule. Rolan tires quickly but tries to keep up the normal lifestyle of a twelve-year-old farm boy. He was elated when Fridays allowed him to get home early enough to go to the school to see his friends and teachers. He even felt well enough to attend a Jr. High Valentines Dance recently. He sat on the stage, watched the dancing and hung out with friends and even went for pizza afterwards. One of his highlights was his church family waiting until he was able to be with them to put on the Christmas program, which was cancelled earlier due to bad weather. They had even left up all the Christmas decorations waiting for his return. He loves having visitors when up to it and always has time to chat on the internet. He truly feels blessed with all the people he has heard from, some of whom he has never met. He often calls close family and friends and ask them to visit so he can see that they are okay. He hates to see anyone cry and is the first to assure them everything is fine.
Now that radiation has been completed, Rolan will have a four week break from treatment but will still need to be in Iowa City at least once a week for some other testing. Then he starts four or six week rotations of chemo, with occasional in-hospital stays for longer periods, for a grand total of 55 weeks of treatment. Good blood counts and remaining healthy are keys to a successful treatment plan. Any sign of fever or anything out of the ordinary should be addressed immediately with a visit to his doctors in Iowa City.
Rolan's life in school will change. A baseline for learning is now being established by the hospital teacher. It is likely that his greatest challenge will be comprehension and recalling information. He will attend classes when possible, having an aid with him at all times and the option to take a nap or go home when the need arises. Big changes are yet to come but right now it is just baby steps.
Lifestyle change is inevitable, but keeping things as normal as possible is very important to the family to help ease any frustrations for Rolan that may come along with his illness. They focus on one day at a time and what needs to be done. No one knows the outcome in store for this bright young man, but thanks to his parents for their planning in the past, they are dong alright now, though they know the road will get bumpy, probably sooner than they would like to admit.
For now, Rolan is doing what he has to do to get well with little or no complaint and his parents will take whatever road they need to keep thei son happy and as healthy as possible. Rolan's love of all things John Deere, four wheeling, tormenting his sisters, his love of family pets, Spike the dog and horses Sauny and Shadow, attending church, and his family and friends, make this Iowa farm boy able to take whatever may come and meet it with his complete faith in God and his never ending optimism.
Rolan is the grandson of Myron and Diane Nagel (Prairie du Chien, WI), and Florian and Leona Steinlage (West Union, IA), and the great-grandson of Lester Nagel (Eastman, WI), and Ervin and Wilma Sabelka (New Hamptom, IA), and the nephew of Chris and Jill Lauer (West Union, IA), Dennis and Carrie Nagel (Wauzeka, WI), Elaine Stendal (Decorah, IA), Gary Steinlage (West Union, IA), Bruce and Lois Buchheit (Lawler, IA), and Keith and Carol Knox (Hawkeye, IA).