Mother and daughter travel more than 4 thousand km per transplant – 10/24/2023 – Health

Wherever she goes, Alena Eudoxie, 6, takes her Mônica. The doll accompanies the girl with a shy smile at meals, classes and appointments in Curitiba, the city she arrived in after traveling more than 4,000 km to undergo a bone marrow transplant.

Alena met Mauricio de Sousa’s character in Brazil. The diagnosis of leukemia was also obtained in the country, a destination suggested by the doctor from Georgetown, capital of Guyana, when he saw that the girl’s health condition was getting worse every day.

Alena’s symptoms began on October 25, 2022. She and her mother, Alice, sought help at the health center in the community where the family lives, but all they got was medicine to relieve her body pain, fever and the headache.

“After she got sick, she lost everything. She lost her memories, she didn’t even remember her name”, narrates Alice. “My family thought she wouldn’t survive, but Alena is very strong.”

In the second week of constant pain, mother and daughter went to Georgetown and, after three days in the capital, went to Boa Vista, their first trip out of the country. In Roraima, the girl stopped walking and talking. She vomited, continued to feel pain and could no longer open her eyes. “It was as if she wasn’t alive anymore,” Alice recalls.

Then came the cause for all that. Alena had acute myeloid leukemia, a disease that is difficult to pronounce and even more difficult to understand when her language is different from that used by the healthcare team. To understand what was happening, Alice tried to learn Portuguese and asked questions — in English — until she obtained some information that she could interpret.

“I had never heard about leukemia. I asked everyone: ‘What is leukemia? What kind of disease is this?’. Some people told me there was a cure and others didn’t.”

CEO of Abrale (Brazilian Lymphoma and Leukemia Association) and leader of the All Together Against Cancer Movement, doctor Catherine Moura states that the lack of information is the first difficulty in combating leukemia. “Although it is the most common type of cancer in children and adolescents, it is still unknown to a large part of the population and even in the health sector.”

“Treatments for leukemia in children and adolescents show excellent results, including a cure in most cases. Many of them are available in the SUS. But the topic needs to be talked about more frequently”, he argues.

Need for transplant

Alena was taken to Brasília Hospital, where she was taken directly to the ICU. Little by little, her movements returned and the disease was controlled with chemotherapy, but it became clear that she would need a transplant.

“How are they going to find this donor? Who is this person? How long will they receive this new blood? Will I spend money? Do I have to pay this donor?”, says Alice about some of the questions that arose with the news.

Not all leukemia patients require a bone marrow transplant. For the majority, chemotherapy is sufficient to combat the disease, explains Cilmara Kuwahara, a doctor at the Bone Marrow Transplant Service at Hospital Pequeno Príncipe, in Curitiba, where Alena underwent the procedure.

In the girl’s case, the tests showed that Alice could not be a donor and the Brasília team then looked for a place that would perform the transplant between unrelated people.

“Most of the services that perform this procedure through the SUS are located in the Southeast region and there are some in the South region, so patients end up having to make this pilgrimage”, says Kuwahara.

“It would be important for more health services to be able to carry out the procedure in the country, to meet demand”, ponders Moura. “But it is necessary to remember that this is a treatment that requires a lot of care and technical knowledge, so it is necessary to think about the patient’s overall safety and also the technical knowledge of the professional team.”

Challenge to find donors

From the moment the healthcare team identifies the need for an unrelated donor, the patient’s data and test results are passed on to Redome (Brazilian Registry of Voluntary Bone Marrow Donors), which searches for compatible options in the country. and abroad.

In Brazil, this process is impacted by miscegenation. “The Brazilian population is genetically diverse due to the mixture of different ethnic groups. Therefore, there are different genetic profiles, which makes it more difficult to find a compatible donor outside the family”, says Moura.

Furthermore, although Redome has more than 5.6 million registered volunteers, there is a lack of greater representation of black, indigenous and Asian donors in this group. “Caucasian patients have an easier time finding compatible donors,” adds Kuwahara.

Doctors also highlight the need to keep the donor registry updated and be aware that the person to whom the marrow will be donated is not chosen.

Alena received the donation on August 3rd and will remain in Curitiba until November to monitor her body’s response to the transplant. After that, Alice plans to settle in Boa Vista with her little one and her 15-year-old daughter who stayed in Guyana.

Until then, her mother hopes that Alena will regain the joy she had before her illness and learn Portuguese with the classes she attends in the company of Mônica.

“I want to say something in Portuguese now”, warns Alice. “I want to thank the people at Pequeno Príncipe, the doctors, the nurses, the technicians, everyone. I also want to thank those who donated to Alena. I know it will take time to meet this person, but one day I want to meet and say : ‘Thank you so much’. I’m sure she’ll read this. And she knows, whoever it is, that it helped.”

As part of the Todas initiative, the Sheet gifts women with two months of free digital subscription