Mary's story

Mary's problems began in early April 2018 - She began to complain of pain. At first we thought it was the throat, but tests at the pediatrician showed nothing. Then I realized that Mary was not showing her throat, but lower down her neck, near her esophagus.
I associated that I myself with reflux experience similar discomfort. When the vomiting came in the second half of April (about two days in a week), I thought to consult a gastrologist. The nearest vacant appointment with the only pediatric gastrologist, who was accepting at the clinic where we have insurance, was not until May 10. Marysia was given syrups for reflux.
Vomiting increased, it was already 2-3 times a day. On May 19 I registered for another appointment - the date was already in June, a week after Corpus Christi. At this second visit, the doctor gave a referral to the hospital right away, so that Marysia would already be thoroughly examined in the ward. So we went from the clinic straight to the hospital. Here they determined that the vomiting could be a neurological symptom and tests were ordered. An MRI for the next morning, and pretty soon on the same day we were able to get a CT scan -. It turned out on her that there was a tumor on the cerebellum.
Immediately after the MRI, using a single anesthesia, a tumor excision procedure was scheduled. The doctor cut out most of the tumor, two 3-millimeter points on the brainstem were left, and during subsequent examinations, it turned out that there was also a tumor-altered section in another part of the brain, which gave suspicion to the spread of the primary tumor. The histopathological examination revealed Marya's tumor is medulloblastoma - embryonal medulloblastoma - a highly malignant cancer.

After 2 chemotherapy treatments in Lublin, with serious neurological complications, Marysia was transferred to Bambino Gesù Hospital in Rome in October 2018, where he continues oncological treatment and intensive rehabilitation. Today we know that the treatment and rehabilitation is having the desired effect. At the Bambino Gesu Hospital in Rome, Marysia underwent 3 cycles of chemotherapy and partial rehabilitation. Some procedures had to be postponed due to complications Marysia underwent after surgical interventions.
In March 2019, after 9 months in the hospital, Marysia was finally able to go home on leave. She had at least six more months of treatment ahead of her, including intensive rehabilitation and two megachemotherapy treatments with stem cell autologous transplantation.
Status at the end of July 2019: Marysia is likely to have completed chemotherapy. She is awaiting neurosurgical surgery to insert a valve into her brain and possibly other measures, depending on the doctors' opinion. Ahead of her is further movement physiotherapy, possibly already in a specialized rehabilitation center, as well as decisions on vision rehabilitation. After a follow-up MRI at the end of August, doctors will determine a plan for the next months of treatment and follow-up.
March 2020 update: After the valve was inserted, Marysia underwent physiotherapy at a specialized rehabilitation center from 16.09.-7.11.19, However, she had to finish it before getting the results expected by the doctors. Subsequent follow-up MRIs in Rome took place on November 22, 2019, February 26, 2020 and June 24, 2020, with good results, so the next one was scheduled for early December 2020. Currently, Marysia already lives in Poland, exercises daily in NDT-Bobath physiotherapy and sensory integration, and is under the care of many specialists: therapists, oncologist, neurologist, endocrinologist, ophthalmologist, dermatologist, nutritionist. As part of early development support, we also hope to receive support from an educator, psychologist and ortho-optic specialists. In September 2020, a 2-week stay at the neurorehabilitation department of the Pediatric Hospital of the Child Jesus in Italy is planned.

March 2021: Marysia had another follow-up visit in Rome, at the Bambino Gesu Hospital. The results came back positive. The doctors decided, among other things, to dispense with orthotics and orthoses, to reduce the dose of levothyroxine, and to let the valve stay for now, for reasons of mild hydrocephalus. She is next examined in September 2021. And until then, rehabilitation and rehabilitation. We continue to fight for Marysia's return to fitness!
September 2021: We start another school year with a follow-up MRI in Rome. The results are good, the doctors are still examining the parents for genetics, and the endocrinologist plans to implement growth hormone treatment from the next check-up in March. In Poland, Marysia has an hour of early development support per week, classes with specialists at an integrated kindergarten, and privately: sensory integration, psychological classes, hand therapy, speech therapy classes and individual rehabilitation.
October 2021: Marysia was hospitalized with suspected sepsis. High fever, vomiting, lack of appetite, enlarged brain ventricles, redness around the valve. Among other things, the return of the dangerous pseudomonas bacterium in the cerebrospinal fluid and sepsis were detected. After a few days in intensive care, Marysia returned to surgery, and the parents quickly organized a fundraiser for specialized medical transportation to Rome to continue treatment with the doctors who have been treating Marysia for the past 3 years. After a safe flight, Marysia came under the care of the Infant Jesus Pediatric Hospital in Rome. Treatment included numerous neurosurgical procedures, examinations, implementation of medications and daily physiotherapy. For Christmas, Marysia was given a pass to return home for a check-up in mid-January. The MRI and other tests came out fine, so we were able to return to the Polish reality with kindergarten, specialists and therapies to go for another check-up in June 2022, and then another one every 6 months.
In October 2023, Marysia began daily growth hormone injections, planned until the end of the growing process. In terms of education, for two consecutive years, Marysia has a deferred compulsory education, so she benefits from specialized support of a special kindergarten, and in September 2025, she will already begin her school adventure in earnest....