Childhood leukemia: “Doctors can’t explain it… 10 days before, Romy was in great shape!”

“The announcement of the diagnosis was a little abrupt because it was made over the phone while we were having dinner, but fortunately, it happened very quickly, which allowed the doctors to take charge. our daughter as quickly as possible”, remembers Priscilla, Romy’s mother.

Type B acute lymphoblastic leukemia: a diagnosis in a few days

Three days earlier, Romy’s parents were concerned to see lymph nodes behind the ear of their three and a half year old daughter, who also had a slight fever and severe fatigue. “It was a Sunday evening, and we called SOS doctors for a consultation. The doctor who came to our house was not that worried and prescribed Doliprane. But as it still did not pass on Tuesday, we went to Romy’s pediatrician who asked us to take a blood test to rule out certain possible diseases, such as mononucleosis.”The blood test is then carried out on Wednesday morning, and it is on Wednesday evening that the ax falls. “Fortunately, our pediatrician is located a few minutes walk from us. As we couldn’t come to her office, she came directly to explain what happened to us at home after the announcement by telephone.”

1 month of hospitalization in Trousseau in the pediatric hematology oncology department

The next day, Romy was hospitalized at the AP-HP Armand-Trousseau in the 12th arrondissement of Paris. “Our daughter had further tests to find out the exact type of leukemia she had, and it was learned that she had type B acute lymphoblastic leukemia.” As is the case with many pediatric cancers, Romy’s leukemia has no known cause. “The doctors can’t explain it… 10 days before, Romy was in great shape… It’s an illness that happens overnight!”

Leukemia is the most common pediatric cancer, with 29% of the 1,780 new cases of cancer diagnosed in children under 15 each year in France, according to the Foundation for Cancer Research. It is a cancer that begins in blood stem cells. In the case of ALL, the cancer cells are so-called “blast” cells because they come from immature precursors of white blood cells called “blasts”. These cells multiply abnormally before finishing their maturation. This causes two problems: they are unable to then carry out their functions, and disrupt the production and growth of other cells (red blood cells, platelets) because they invade the bone marrow. B-ALL, which represents 85% of ALL, specifically affects the lineage of type B lymphocytes which are used to produce antibodies. The peak frequency of these leukemias is between 2 and 5 years of age and their evolution is often favorable, with a cure in 90% of cases thanks to treatment.

Induction phase: “She received several chemotherapy drugs and corticosteroids”

Once Romy’s type of leukemia was known, doctors began the first phase of treatment called the “induction phase.” “Romy stayed in the hospital for a good month. During this time, she received several chemotherapy drugs and corticosteroids.”, Priscilla explains to me. This phase lasts around thirty days and aims to destroy as many leukemia cells as possible. “The corticosteroids caused several side effects for Romy, with mood changes, waking up in the middle of the night when she was very hungry… But she was always very combative and, even afterward, she took her medication very well.“The passage into a sterile room was also a little more difficult to live with, but it is often essential during the aplasia phase, this moment when chemotherapies have so destroyed the cells of the bone marrow that the body becomes very susceptible to infections. “But it didn’t last very long, the mother reassured me, and our daughter was then able to leave the hospital to continue treatment at home.”

Consolidation phase: “Romy could not be in a closed environment with other children because of the risk of infection”

Returning home marks the beginning of the “consolidation and intensification phase” which lasts 4 to 10 months. During this period, the little girl had to keep a catheter for the administration of chemotherapy, which was done during short hospitalizations. “Romy could not be in a closed environment with other children because of the risk of infection, so she was not able to return to school for that entire year. We did a lot of outdoor activities to keep him busy and see his friends, we went to the park, we took him to the carousel, walks in the woods, etc.”

Maintenance phase: “We have almost returned to normal life since August because the doctors removed his catheter”

And then during the summer of 2024, Romy participates in a clinical trial for six weeks which marks the end of this second phase. “We have almost returned to normal life since August because the doctors removed her catheter which no longer worked, and fortunately, which she no longer needed.” Romy is now in the third phase, that of “upkeep or maintenance”, and takes her chemotherapies only orally, which makes her a little more fragile in the face of winter illnesses, but the little girl was able to return to school for the start of the 2024 school year. “We have difficulty telling her that she is cured because she is still in the maintenance phase until January 2026”, tells me the mother who is still hopeful. If all goes well, Romy will stop taking all medications in a little over a year, then will be monitored for a few years by doctors to detect any possible relapse.