The treatment cost of more than 4 million yuan was exchanged for endless questions and pain.
The death of a 6-year-old boy, Fan Yuzhe, not only plunged a family into grief, but also uncovered a disturbing medical mystery.
When desperate parents rummage through thick medical records, they discover shocking information that their beloved child may have unwittingly become the "guinea pig" of a medical experiment.
What kind of secret is hidden behind this tragedy?
Leukemia little warriors
When two-and-a-half-year-old Fan Yuzhe was diagnosed with acute lymphoblastic leukemia, the bad news instantly shattered the tranquility of an ordinary family.
The world of Li Xia and Fan Hongqing was turned upside down at that moment, and the focus of their lives was only one from then on, to save their son.
With hope, the family embarked on a journey to Shanghai Children's Medical Center, where Xiao Yuzhe underwent eight months of gruelling treatment.
Every chemotherapy treatment is like a battle with death, and the small body endures unimaginable pain, however, this brave little warrior finally ushered in the joyful moment of recovery and discharge with amazing perseverance.
Unfortunately, fate seems to favor this strong little boy, and just when the whole family thought that the nightmare was over and ready to start a normal life again, the haze of leukemia hung over them again.
In less than a year, Xiao Yuzhe's condition relapsed, and this time it was even more difficult to recur in the testicles.
Faced with the advice of experts from many hospitals in Shanghai to "remove the testicles and then perform a bone marrow transplant", Li Xia and his wife fell into a deep entanglement, and they began to run around, hoping to find other treatment options.
At this time, a well-known expert in Shanghai recommended to them two chief doctors of Beijing Boren Hospital, who were once the protégés of Lu Daopei, a famous hematology expert in mainland China, and had made great achievements in the field of hematological treatment.
In the summer of 2017, a family of three embarked on a train to Beijing, and at Boren Hospital, doctors gave Li Xia and his wife a treatment plan that caught their eyes: first CAR-T immunotherapy, followed by haploidentical bone marrow transplantation.
This plan not only avoids the risk of removing the testicles, but also gives Xiao Yuzhe a chance to regain his life.
Since Boren Hospital did not have a transplant warehouse at that time, Xiao Yuzhe had to transfer to another hospital for bone marrow transplantation after completing CAR-T treatment.
The surgery was successful, but it was followed by a series of serious complications, severe intestinal infections, skin rejection, severe diarrhea, each symptom like a relentless test of this fragile life.
In February 2018, after more than half a year of treatment, Xiao Yuzhe was finally temporarily out of danger and was discharged from the hospital, however, this short respite did not last long.
Only half a year later, during a routine review, Boren Hospital suddenly issued a critical illness notice, which once again pushed Li Xia and his wife into the abyss of despair.
In the face of the ensuing setbacks, Li Xia and Fan Hongqing never gave up, they firmly believed that as long as there was a glimmer of hope, they would fight for their children to the end, but what they didn't know was that bigger challenges awaited them.
The "yin and yang" world in the hospital
In the hospital ward, every test report can be the difference between life and death, and for Fan Yuzhe's parents, these papers full of jargon are like the key to deciphering their son's life code.
However, they never imagined that these medical records, which should be objective and accurate, would become a confusing "yin and yang" world.
On August 21, 2018, Xiao Yuzhe, who was originally just a routine review, was suddenly issued a critical illness notice, which caught Li Xia and his wife off guard.
In order to better understand their son's condition, they began to carefully study each test report and the doctor's ward rounds.
It was during this process that a disturbing discovery emerged, and in the doctor's round on August 23, it was clearly written that the cerebrospinal fluid was negative for herpes simplex virus and Epstein-Barr virus.
The test analysis report on the same day also showed that the test result of Epstein-Barr virus in the plasma was negative.
Just one day later, however, the doctor's rounds on Aug. 24 were strikingly reversed, and they couldn't understand why the same test could produce diametrically opposite results just 24 hours apart.
Li Xia and Fan Hongqing began to review the entire treatment process, trying to find answers, however, the more they delved, the more doubts surfaced.
They found that not only were there contradictions in the results of the Epstein-Barr virus tests, but there were also inexplicable discrepancies between some other test results and the doctor's diagnostic records.
Mr. and Mrs. Li began to wonder if there was some secret behind these seemingly professional medical records that they didn't know.
As time passed, Li Xia and Fan Hongqing began to realize that behind these seemingly simple numbers and records, there may be important information hidden that affects their son's life.
The Li couple began to wonder if some of the key test results had been overlooked, or if some important treatment decisions had been made based on incomplete or inaccurate information.
Each time they looked through the medical records, they felt a wave of palpitations, and they began to think repeatedly about whether they should seek a second medical opinion, whether they should ask the hospital for a more detailed explanation of these contradictory records.
However, in a world full of jargon and complex medical procedures, ordinary parents often feel helpless and lost, they do not know how to question the professional judgment of doctors, and they cannot ignore the amplifying doubts in their hearts.
In this world of "yin and yang" intertwined medical records, Li Xia and Fan Hongqing can't help but think about a larger question: how patients and their families should protect their rights and interests in the modern medical system.
"Guinea pig" or "little angel"
Mr. and Mrs. Li were surprised to find that their son had undergone this experimental treatment, unbeknownst to them.
The discovery left Li Xia and Fan Hongqing in deep self-blame and anger, and they recalled that every time they signed the informed consent form, the doctors always rushed through it, never explaining in detail the specifics of the treatment and the possible risks.
They began to wonder if someone had taken advantage of their lack of medical knowledge and unknowingly turned their child into a "guinea pig" for a medical experiment.
Even more troubling, they found that Boren Hospital, as a level II hospital, may not be qualified to carry out such a complex and cutting-edge cell therapy.
As the investigation deepened, Li Xia and his wife found that the time when Xiao Yuzhe received EBV-CTL cell transfusion coincided with the controversial EBV test report.
Every doctor's diagnosis, every treatment plan, began to be clouded. They don't know who to trust or how to make the best choice for their children.
At the same time, Xiao Yuzhe's condition did not improve significantly because of this experimental treatment, on the contrary, his physical condition continued to deteriorate, and various complications followed.
Looking at the child's emaciated body and painful expression, Li Xia and Fan Hongqing's hearts were bleeding, and they began to question themselves whether they should have been more vigilant about the medical process earlier, and whether they should have been more active in seeking other medical advice.
After the angel parted
April 30, 2023, a day that should have been full of hope, has become the darkest day in the lives of Li Xia and Fan Hongqing.
Their little warrior, 6-year-old Fan Yuzhe, finally left this world after four years of fighting cancer.
Xiao Yuzhe's departure not only took away the laughter of a family, but also took away the whole meaning of the struggle of Li Xia and his wife, and for four years, their lives have completely revolved around the treatment of their son.
Every chemotherapy, every operation, every sleepless night is a proof that they tried their best to save their son's life, however, fate was so cruel that all their efforts came to naught.
The pain of losing their child, coupled with their suspicion of the medical process, plunged Li Xia and his wife into deep self-blame and anger, and they felt that they had not only lost their favorite child, but also unknowingly become an accomplice in some kind of medical experiment.
Driven by this complex emotion, Li Xia and Fan Hongqing decided to seek legal assistance, hoping to find out the truth and get justice for their children.
They began to collect all possible evidence, including medical records, treatment plans, examination reports, etc., hoping that through legal means, they could not only seek justice for Xiao Yuzhe, but also provide warning and help to other families who may be facing similar situations.
However, the lack of professional knowledge, the difficulty of collecting evidence, and the complexity of the legal process have all become obstacles in their way forward, and every meeting with a lawyer and every time the evidence is collated, they have to re-experience the pain of losing their child.
At the same time, they also face different voices from society, with people who understand their pain and support their decision to seek the truth.
Some people also think that they are making trouble unreasonably, that the doctor has done his best and should not be pursued again, and these different voices make Li Xia and his wife feel even more isolated and helpless.
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