Loving Life: Toddler, family come through battle with cancer

While getting her picture taken last week, 2-year-old Lois Hogan clapped, laughed, bounced and blew kisses, her bald head the only sign that she’d recently endured months of chemotherapy and survived a battle with cancer.

“She loves life, my little pumpkin,” her mother, Catherine Hogan, said in an interview last week.

Lois, who has Down syndrome, was born seven weeks premature with transitive myeloproliferative disorder (TMD), Hogan said. Only children with Down syndrome get TMD; essentially, Lois was born with leukemia cells in her body, she said. When those cells are in the body at birth, she said, the cells will either do nothing or develop into leukemia.

In Lois’ case, the cells were gone in 48 hours, said Hogan, whose family lives in Chesterfield.

“Because she was born with that, we always knew she was at an increased risk to develop leukemia before age 3,” she said. Children with Down syndrome have a higher risk of getting that type of cancer, but they also have a 90 percent to 100 percent survival rate, she said.

During the first year of her life, Lois’ blood was tested monthly. She was tested every other month until her she turned 2; doctors ordered routine blood work at her 2-year checkup, which was in October 2009, Hogan said.

Life went on, but the blood tests got put off, she said. Meanwhile, Lois’ energy level dropped. One day, after an appointment with her physical therapist, Lois had petechiae – small red spots on the skin caused by broken blood vessels – all over her wrists, she said.

When her blood work was completed in January, Lois platelet count was dangerously low. Lois’ was ultimately diagnosed with myelodysplastic syndrome (MDS), which can turn into acute myelogenous leukemia (AML), Hogan said.

“We were fortunate she didn’t have full-blown leukemia,” she said. “That was Jan. 22, and I will never forget that date, that moment.”

Lois underwent surgery to have a portacath inserted under her skin, and soon began the first of her six chemotherapy treatments at the Pediatric Oncology and Hematology Clinic at MCV, she said. Her treatments were all in-patient, Hogan said, and they ranged from 48 hours to 168 hours in length.

She held onto her hair for more than five months, Hogan said, and “then within 24 hours it was gone.” The chemo didn’t make Lois sick, but it did suppress her immune system; she developed pneumonia shortly after her first treatment, Hogan said. Lois was hospitalized for each of her treatments, and four other times for illness – pneumonia, two fevers of unknown origin and, in recent weeks, a bacterial infection, Hogan said.

But, last week a bone marrow aspiration showed that Lois has fully recovered, Hogan said.

“She’s officially finished and we haven’t been able to stop smiling,” she said.

Throughout the ordeal, Hogan’s sister, who also lives in Chesterfield, and parents, who like in York, Pa., were there to provide support, she said. The area’s Down syndrome community and other families the Hogans met at the clinic were also a great help, she said.

“We lost a member of our [Down syndrome] group Lois’ age,” Hogan said. The girl had her first cancer treatment, came down with pneumonia and didn’t survive, she said.

“In light of what happened to her, everyone really rallied around Lois.”

ASK, the Association for the Support of Children with Cancer, creates lots of opportunities for the families of children being treated at the clinic to get together, she said. “ASK does a great job of making that place [the clinic] bright and cheerful,” she said.  

Travis Sabalewski, a member of ASK’s Board of Directors, said the organization was founded by a group of parents of children who were receiving treatment at the MCV clinic.

Sabalewski got involved because he has a daughter who is a cancer survivor, he said.

“She’s been out of treatment for about a year,” he said. Approximately 500 children, many of them from this area, are treated at the clinic each year, he said. One of ASK’s programs to help raise awareness of pediatric cancer is Kourageous Kids. The presentation includes posters with photos of the children and written statements by the parents or children about their ordeal, he said.

“It’s an amazing testament to how strong those families are and how strong and courageous these kids are,” he said. Lois is one of the organization’s Kourageous Kids this year.

Writing her thoughts for the display was daunting, Hogan said.

“How do you put into words this experience you’re having?” she said. Essentially, she said, she wrote that though cancer took her daughter’s hair, ability to go to preschool and freedom, “there’s so much it didn’t manage to take from her.”

Hogan and her husband, Jay, “would talk about often how lucky we are in many respects,” she said. “We’re very lucky one of us was in the hospital with Lois every minute of every hour she was in.” The family is also lucky because of the relatively short length of Lois’ treatment, she said.

“Yes, it’s been the longest eight or nine months of our lives, but compared to many of the families we met, we got off easy,” she said. “You live in constant fear for your child’s life. … It consumes your life. You also let yourself go to pot.”

To other parents facing their child’s cancer diagnosis, Hogan would say, “Buckle your seatbelt.”

“I would tell them that I think, probably, some of our darkest moments as a family happened,” she said. “But, throughout this horrible experience, there have been lots of moments of joy. … It’s really made us appreciate what we do have and it has really shown us how amazing our daughter is.”

It’s hard to get used to the ordeal being over, she said. Though Lois’ risk of a relapse is less than 5 percent, Hogan doesn’t feel that the family can ever fully step out of that world.

“I’m not ready quite yet to do it, but I want to find some way to help out,” she said. “It is hard to shake that fear that you’re living under, but it’s so nice to be able to say,

‘Yes,’” and begin making plans to go out, attend other children’s birthday parties, etc..

Both Lois and her 14-month-old bother, McGuire, will start preschool on Sept. 13, Hogan said. As the family’s life returns to normal, she said, “it’s almost like I have survivor’s guilt.”

“We’re done, but I can think of all these friends we’ve met at the clinic who are still fighting the good fight,” she said.

Comments

Update

It is with great sadness that I must report that Lois relapsed and has ultimately lost her battle with Leukemia. A bone marrow transplant might have saved Lois' life but she was unfortunately unable to reach remission. However, there are many, many other patients who ARE in a position to undergo a BMT but cannot because there is no match in the registry. Please, please, please, if you have not already joined the registry, consider joining right now. You could save a life like Lois.

Lois Beats MDS

Congratulations to Lois .. and also to her family support and the medical team. Often adversity brings out the strength of people with down syndrome. Her picture is one of beauty .. even without hair. The smile and sparkling eyes say it all.

My daughter had a rare autoimmune disease followed by MDS and then full blown AML. That was in her 20's which is when cancers in people with DS are supposed to be few. She fell out of remission after a couple of wonderful years and faced AML again, this time much more challenging. A bone marrow transplant with her brother as donor. She is now six years post transplant, healthy and living in her own apartment.

Three years she took part in the Leukemia and Lymphoma Society's Hike for discovery, raising $ 7000 in payback for more research on leukemia.

see:
http://www.active.com/donations/fundraise_public.cfm?key=JanDil

Post new comment

More information about formatting options

CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.
By submitting this form, you accept the Mollom privacy policy.