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Hayden, age 7, gives a wry smile as he snuggles against his mom, Sarah, and makes his stuffed dinosaurs perform tumbling tricks on her body. One lands a flip on her head. Another somersaults down her arm.
“The dinosaurs were a gift from us for being so brave. He’s a champ. He has learned he can do hard things,” says Sarah.
At the Bass Center for Childhood Cancer and Blood Diseases, located on the new fifth floor of Lucile Packard Children’s Hospital Stanford, Sarah and Hayden are known as Mamasaurus and Haydensaurus, and they have T-shirts to prove it—compliments of the staff.
“We have three children, and up until this past year, we hadn’t even been to the emergency room. The most serious illness we had was pink eye,” Sarah says.
In September 2019, Hayden turned yellow. He had extreme jaundice and his liver was failing. He was referred to Packard Children’s, where he was diagnosed with autoimmune hepatitis. Hepatologists immediately put him on the list for a liver transplant, but fortunately he didn’t need it. New medicines helped heal his liver, and he was sent home.
However, last spring, during the early days of the pandemic, Hayden developed severe aplastic anemia—a rare condition in which the body stops forming enough new blood cells. Aplastic anemia occurs in just one in 20,000 people each year in the United States. Liver failure can trigger it in children.
“Aplastic anemia is rare, but everything we treat is rare—so from our standpoint here at the Bass Center, it’s not rare,” says Ami Shah, MD, hematologist-oncologist.
Hayden returned to the Bass Center, which gives families hope for treating cancers and blood diseases where little existed before. The treatment for aplastic anemia is immunosuppression therapy and medications, and, if that doesn’t work, a stem cell transplant.
“COVID-19 hasn’t slowed us down at all. In fact, we are busier than ever,” Dr. Shah says. “The staff has really stepped up to meet the double challenge of being extra-busy during a pandemic.”
The recently created 24-bed stem cell transplant unit treats rare and previously untreatable conditions with both standard and investigational stem cell transplants. This fall, Packard Children’s celebrated its 1,000th pediatric stem cell transplant.
“Sometimes our patients are the only one or two in the world with a particular disease, so we really come together to think critically, research, and innovate to offer cutting-edge treatments and cures,” Dr. Shah says.
When Hayden’s blood cell counts didn’t improve, he was put on the stem cell transplant list and was immediately matched with three unrelated donors. But the pandemic changed how the transplant process worked.
“All three donors backed out, which has never happened to me before as a doctor. With COVID-19, people are appropriately leery of being around sick people in a hospital. Normally, we can look outside the United States, but with travel restrictions, that wasn’t an option,” Dr. Shah says.
Hayden was put back on medication until new donors could be found. Dr. Shah worked up two donors at the same time, in case one got COVID-19. On Oct. 29, 2020, Hayden underwent a stem cell transplant.
“We learned that Stanford always has a plan A and a plan B going at the same time. We are very impressed by the level of care we received, and we only have positive things to say about our experience,” Sarah says. “We really felt loved on and cared for. Everyone, from the doctors, nurses, child life specialists, to the social workers and therapists, was amazing.”
On Nov. 19, 2020, Hayden was released from the hospital. He and his mom are sticking close by so they can go to the Bass Center for regular tests to see how his liver is doing and how his blood platelet counts are progressing.
“His platelets were at 127 a few weeks after transplant and continue to rise,” Sarah says. “Normal is 150, so to have these numbers, I have to keep pinching myself.”
Hayden’s liver is looking good, and his doctors are cautiously optimistic.
“If things continue as they are, this is a curative treatment for Hayden,” Dr. Shah says.
Hayden fit right in on the 5th floor, where zebras, elephants, giraffes, and other safari animals welcome you. His love for creatures doesn’t stop at dinosaurs. He loves all kinds of animals, reptiles, birds, and insects.
“We have an amazing new play area for our stem cell patients, but it’s closed due to the pandemic. Everyone came together and got creative to keep kids engaged and happy in new ways,” Dr. Shah says.
Child Life specialists offered a slime-making class, where Hayden and other kids were given kits to make the goo together virtually from the safety of their own rooms. The team went out of their way to play games and do fun activities with Hayden. Dr. Shah challenged Hayden to look up traditional Indian stories of Diwali, which he happily did.
“His doctors and nurses brought Hayden pictures of his favorite animals, like sloths and dinosaurs and snakes. They know he’s smart, so they challenged him to find answers to animal-related questions,” Sarah says.
COVID-19 hasn’t stopped the Bass Center’s tradition of giving kids a big send-off when they leave the hospital. There are balloons, streamers, bubbles, and clappers. All staff sign a big card, sharing their encouragement. They wear masks and line the halls and cheer and dance to the child’s favorite song as the child walks out. No surprise, Hayden chose an animal-themed song: “Who Let the Dogs Out,” by Baha Men.
“It was really special. It marked a big milestone to get out of the hospital,” Sarah says. “It’s really bittersweet because you get close to everyone, and you hope to not see them again, but they are family.”
Recently, Hayden was cleared to ride toys with wheels. His dad, Jeff, surprised him with a scooter. Soon, Hayden and Sarah will return home, where he can get back into the routine of playing practical jokes with his sister, Angela, 9, and playing Legos with his little brother, Colton, 2. Hayden has missed them, since they weren’t allowed to visit the hospital due to COVID-19. Yet, leaving isn’t easy.
“I don’t want to go,” says Hayden. “I like my hospital friends.”