A risky transplant for a McHenry County boy so far is working
Potty training, slipping down a slide unaided, and entering preschool are ordinary yet momentous milestones of a child's life.
For Jenny and Brad Christiansen, it was perhaps wishful thinking to believe their 3½-year-old son, Teddy, would reach those benchmarks. Teddy struggles with a rare genetic disorder and underwent an invasive bone marrow transplant that has left him more vulnerable than a newborn.
Yet, the Christiansens never gave up hope, even though doctors could not give any odds of Teddy's survival because of his rare condition.
"Until the second they gave his dose of chemotherapy, I wondered if we were doing the right thing, but knew that it was his only chance to have hope," said Jenny Mukahirn Christiansen. "It was more like he has a really good chance because he had the best possible (donor) match that he could have had besides a sibling. There's just not enough people who have had transplants for this condition."
The surviving half of prematurely born twins, Teddy was diagnosed last spring with dyskeratosis congenita, a rare genetic disorder that causes bone marrow failure, or the inability of marrow to produce enough blood cells. His rare variant of the disorder, Hoyeraal-Hreidarsson syndrome, could lead to leukemia or solid organ cancer.
Today, 143 days after the transplant, Teddy is thriving despite having a severely compromised immune system and not being able to interact with people freely.
Teddy started preschool this month in Huntley, with his older sister Raelyn, 4½.
His immune system doesn't allow him to learn alongside his peers in a classroom, so the school district provides homebound schooling with a tutor and physical, speech and occupational therapists.
"It was exciting," Christiansen said after completing Teddy's preschool registration. "It's a milestone for us."
Teddy has more energy now, climbing on top of the dining room table and spinning in circles atop the coffee table. He moves faster and is more mischievous than ever before, often leading his younger siblings, Bridget and Josie, both 19 months.
"He is teaching his sisters bad habits," Christiansen laughs. "Teddy and Josie are going to be climbing trees by the end of this summer."
She said Teddy's balance has improved and he is more stable.
"He is just probably feeling better, and developmentally he is doing better," she said.
Teddy now has a full head of hair. He has grown taller and bigger, standing at roughly 38 inches and weighing about 29 pounds - he gained nearly 5 pounds in the five months since the procedure.
"That was a blessing ... because usually kids go off their food (after a transplant)," Christiansen said.
Yet, there are daily challenges to overcome.
The Christiansens limit visitors to their home since Teddy cannot come into contact with anyone who is or has been ill, or has been around sick people.
Sister Raelyn - who donated more than 10 inches of her hair to Locks of Love in Teddy's honor - is highly protective, monitoring all visitors for proper hand washing before going near him.
Though he is able to venture outdoors, attending birthday parties, flying in airplanes and taking a trip anywhere is out of the question.
"His immunity is not where it needs to be yet," Christiansen said. "He needs to get re-immunized like a baby would. They won't even start doing that until one year post-transplant. He could easily catch a cold right now and it would be devastating."
Christiansen credits Teddy's survival to the work of doctors, nurses and social workers at the University of Minnesota Children's Hospital in Minneapolis and the prayers of so many friends and community members from the family's hometown of Des Plaines as well as Union, the small McHenry County town where they now live.
"Every doctor, nurse that he has come into contact with has basically said he's a rock star," Christiansen said. "Their hope is that someday all transplants would go that well."
Teddy's 9-minute bone marrow transplant on Nov. 6 involved killing off his own bone marrow through chemotherapy and radiation and dripping stem cells extracted from an anonymous bone-marrow donor into his body. He was kept in isolation for 19 days after the transplant before being discharged, receiving blood transfusions for weeks until his blood counts improved.
The stem cells have since engrafted into Teddy's body and are growing. Teddy's own diseased bone marrow cells have not re-emerged, but he has a long way to go before he is in the clear.
Despite having very few complications from the transplant, Teddy was readmitted to the hospital twice after discharge for a fever and blood infection that was treated with antibiotics.
"He hasn't had to have any transfusions to counterbalance his bone marrow production," Christiansen said.
Teddy is on medication to prevent Graft-versus-host's disease, a common complication of bone marrow transplants in which the newly grafted, functioning immune cells fight the recipient's body.
"It can be real mild like a rash or it can be fatal," Christiansen said.
Teddy now has weekly checkups to monitor his medication levels and blood counts. The family will return in May to the Minnesota hospital, for the six-month anniversary of his transplant.
"We're really glad to be together as a family and see what comes next," Christiansen said. "We're just so happy and so thrilled to be getting back to normalcy, and begin the next chapter in our lives - watch him grow and all the kids together."
<p class="factboxheadblack">A mother's journal</p>
<p class="News">Excerpts from Jenny Christiansen's journal on CaringBridge Web site:</p>
<p class="breakhead">11:25 p.m. Dec. 29:</p>
<p class="News">Although sad, I couldn't write this entry without mentioning that today was the third anniversary of the day that our baby Kenny passed away. Teddy lost his twin brother that day, but gained a guardian angel. I knew he would show his spirit today, and as soon as the nurse practitioner read Teddy's amazing counts this morning, I knew he was right there with us. He may have been tiny, but he was mighty.</p>
<p class="breakhead">9:57 p.m., Jan. 13:</p>
<p class="News">There is a segment on the local news here in Minneapolis. The segment is called "Good Question." Tonight's "good question" was if there was really power in mass prayer. The question was sparked by the devastation in Haiti, and the enormous amount of Internet tweets and posts suggesting to "pray for Haiti." We, of course, believe this is true and want to thank everyone again for their continued prayers for Teddy and our family.</p>
<p class="breakhead">11:07 p.m., Feb. 18:</p>
<p class="News">On a real fun note, the Brookfield Zoo is having a contest to name their four new baby Galapagos tortoises. Teddy is going to submit an entry to name it, well, Teddy of course! Could you just imagine, visiting Brookfield Zoo now, 10, 20, 30, 50, 150 years from now to see Teddy Tortoise? Gosh, now how neat would that be? A tortoise that could live to be a hundred and fifty, named after a spunky 3 year old with a premature aging disorder. Are prayers appropriate for tortoise naming contests?</p>
<p class="breakhead">11:10 p.m. March 18: </p>
<p class="News">Teddy gave us another big surprise on Tuesday. He decided that it was time to be a big boy and go down the slide all by himself. We were so excited and very proud of him ... I'm getting teary-eyed just thinking about it! He climbs right up, turns around, lays on his belly feet first, holds on to the top lip of the slide, lowering his body down until he is hanging, then with a giant joyful smile, lets go.</p>
<p class="News">To follow Jenny's journal: <a href="http://caringbridge.org/visit/teddychristiansen/journal/" target="new">caringbridge.org/visit/teddychristiansen/journal/</a>.</p>