Rong Rong's disease is more difficult to read: acinar rhabdomyosarcoma.
From the onset of illness at the age of 15 to the present, she has experienced new onset, recurrence and metastasis, undergone 3 general anesthesia surgeries, 18 chemotherapy and dozens of radiation therapy, and is still living in the ward of the Pediatric Oncology Department.
But even after suffering a lot, she still feels that life is good, and she still has beautiful hopes and hopes for the future.
The following is her self-description.
In 2019, I was in the third year of junior high school, near a physical education class on National Day, I fell, and the palm flesh under the thumb of my right hand accidentally pressed the stone on the ground, and I inhaled a cool breath in pain. Touch it, there's a little hard lump inside, I didn't care.
National Day holiday at home, and inadvertently touched the hard block, or very painful, my mother took me to the town hospital, the doctor said that it was lipoma, and it was good to take a small operation at the end of the mid-year examination.
(Me before I got sick)
Later, I often thought that if I paid more attention to this painful lump at that time and went to the big hospital to review it, things might have become different, right?
But for a junior high school student who lives in a small place and needs to change his fate by the entrance examination, the upcoming middle school entrance examination is too big, and everything else has to make way for it. Surgery means taking a vacation, not being able to hold a pen and not being able to study, it is too luxurious, and it is too slow to slow down.
I would also think how nice it would have been if the entrance examination had ended at the time of the onset of the disease... But in the end, it is only a fantasy.
In January 2020, when I was preparing for physics at the end of the first semester of the third year of junior high school, my right hand accidentally hit the table, and the whole body swelled up, and I couldn't hold a pen in pain. In desperation, I put down my homework and went to the county hospital, this time the doctor said that it was a hemangioma, a small problem, "But you are so painful, or hurry up and deal with it." ”。
(View from the ward)
Because I had to do surgery, I missed the final exam of the first half of the semester and thought it was the biggest sacrifice. I grew up in a very healthy body, I have never had an injection or infusion, and this time I stayed in the hospital for 9 days, which is also a fresh experience.
The operation was performed according to the protocol of hemangioma removal, the right arm was anesthetic, but the whole person was extremely awake, and I was able to distinguish the sound of knives and other surgical equipment scratching, cutting, and cutting the skin muscles. The operation was completed in more than an hour, and I walked from the operating room on the third floor to the second floor ward by myself.
My mother took care of me all the time during those days, and this was a rare time for mother and daughter to spend "all day and night" together after I went to junior high school. In the past, my mother was busy at work, and we were not very close, but this time it may be because the wound is too painful, the person has become fragile, and I feel as if I have returned to the state of a child, and I am in the ward every day to play with my mother.
At that time, I was still thinking about it, "Hurry up, get out of the hospital quickly, and go back to make up for my homework and prepare for the middle school entrance examination."
(My mom and me)
After the operation, the doctor said solemnly: "This is not like a common hemangioma, it is recommended that you send it to Wuhan for pathology." "I didn't pay much attention to it, and I assumed that the operation was done and everything was fine.
On January 6, the operation was carried out, the pathological slices were sent to Wuhan on the 7th at the doctor's suggestion, and on January 22, the family learned of the pathological results: acinar rhabdomyosarcoma, malignant tumor.
Looking back, 2020 was a dark and long year for me.
(After getting sick, my weight dropped from 50 kg to 43 kg)
After knowing the pathological results, my mother checked the information on the Internet, and after that, she often cried silently alone. And I didn't even notice that something was wrong with her, because at that time, my grandfather was very ill, and I was worried about my grandfather's condition while still maintaining a nervous revision of the preparation for the exam.
On the night of the Lantern Festival, Grandpa died. I was sad, but more sad, because the more than half a year before my grandfather's death was so painful.
That was also the time when the epidemic in Wuhan was at its tightest, and my right hand was so swollen that I had to find a way to go to a big city for treatment. At the end of February, we thought of various ways, submitted various supporting materials, and finally left Hubei and went to Guangdong to seek treatment.
(I'm in my hometown)
That's when I really began to understand what such a disease meant. Mom has been inquiring about my illness from various sources, absorbing a lot of terrible and negative information, causing her to be very emotionally unstable, often because of a little wind and grass in my body and collapse, but she firmly refuses to tell me about the condition.
It was my sister who slowly told me everything about the severity of the condition and the treatment I might face. Even at that time, my first reaction was "if I leave school, the middle school entrance examination will be finished"...
(My sister has always accompanied me and supported me)
At a large hospital in Shenzhen, the doctor said I needed to have a palm amputation, and half of my right palm was cut off along with my thumb. I couldn't accept it at all, but I was afraid that if I delayed, I would lose my life, and I lived in fear and entanglement every day.
Fortunately, my sister has been holding out for all kinds of help, and finally under the guidance of the patient group, she took me to the Affiliated Cancer Hospital of Sun Yat-sen University in Guangzhou for medical treatment, where the doctor did not recommend amputation, but formulated a chemotherapy plan for me.
(Treatment plan in a hospital in Guangzhou)
The financial pressure caused by the treatment of diseases is very high. My mother returned to Hubei to work to earn medical expenses, my father went to Jingzhou to work, and my sister and I stayed in Guangzhou.
I vividly remember the day of March 25, when I finally put on chemotherapy. That day, I especially wanted to eat dumplings, but after eating them, I threw up all because of the chemotherapy reaction. The following year, I never ate dumplings again.
The chemotherapy was terrible, and that fear and pain still affect me to this day. Nausea, nausea and vomiting completely cut off the desire to eat, and once I was medicated, I could not eat for several days in a row, and I had to rely on infusion of nutrient solutions to maintain. At that time, I often thought sadly, I used to be a hungry child, how can I even eat well become a luxury?
It was also at that time that my hair was getting thinner and thinner, and I chose to go to the barbershop and shave all my hair, but I didn't dare to look at myself in the glasses. Stepping out of the barbershop and standing on the busy street, I leaned on my sister's shoulder and wept silently.
(After chemotherapy, my hair fell out badly)
After the third chemotherapy, my high fever did not go away. Since then, I have been hospitalized for at least seven days during the inhibition period after each chemotherapy. I repeated the process of fever, dizziness, headache, and loss of appetite, and then again, and when I looked up, I could only see bags of antibiotics, blood, or platelets, flowing endlessly into my already fragile blood vessels...
I fainted in the hospital more than once, waking up with a white wall and a white bed and white quilts, and the cries of the little patients in the next bed; my body was covered with ECG monitoring lines, and a group of nurses and doctors gathered around my bedside. Another time, my infusion port was blocked, but antibiotics had to be used, and the nurse stuck an indwelling needle in my left arm. I began to talk to my left arm in a trance: "You're wronged, aren't you?" Obviously, something happened to the right hand, why is it you who suffers..."
(I fainted in the hospital more than once)
In October 2020, I finally completed my tenth chemotherapy, "seamlessly" to radiation therapy. Radiotherapy was given a synchronized chemotherapy drug, irinotecan, and after the treatment, I began to have severe diarrhea, running to the toilet more than twenty times a day, and the blood picture index was also frighteningly low. At that time, I had a high fever of nearly 40 degrees, my stomach hurt and I shed tears at night, and I kept rolling in bed......... My sister got up in the middle of the night every day to take my temperature, asked the nurse for anti-inflammatory drugs, and everyone tried their best to make me comfortable, but I still felt endless pain and loneliness.
(Compared to my sister's hand, my hand is much darker))
After the radiation treatment, my right hand began to peel off and became black and dry. I didn't want to look at it and felt disgusted from the bottom of my heart. At that time, I often thought that if I could make this right hand as healthy and beautiful as others, I would pay all the price.
Even on New Year's Eve, I spent it in a laminar flow bed in the cycle of "radiation therapy-chemotherapy".
At the beginning of February this year, the 13th chemotherapy was over, we went to Huizhou to spend the Spring Festival with my uncle, and then returned to Guangzhou for a definitive treatment to check PET-CT. I hoped that the painful treatment would come to an end, at least allowing me to breathe, eat and walk as easily as a healthy person, but at the end of February, a review showed that I had a 2.2 cm × 2.5 cm nodule in my lungs.
(Spring Festival with my uncle in Huizhou)
That night, my sister and I cried with our heads in our arms, feeling hopeless like never before. Since I got sick, I have asked myself many times questions such as "Why am I" and "Why am I sick like this?", but I have never been able to find the answer. I can only continue to persevere.
The puncture of the lung nodule failed, and the nature of the mass could only be known by removing it, so I underwent a second surgery. After the operation, the knife edge was particularly painful, as if it was about to explode. I had a needle in my neck and a pain pump attached to it, and I couldn't eat, so I drank a bottle of milk and vomited it all out in a few minutes.
Fortunately, the postoperative pathological results showed a fungal infection, and the whole family breathed a sigh of relief; I was finally able to feel a little relieved that the nightmare was finally coming to an end.
(In March this year, I took a group photo with my mother)
In March of this year, after more than a year of wandering, I finally returned home and met my parents and relatives who had been separated for more than a year.
I was fine with my review in June and it was probably my most relaxed and enjoyable time since I got sick.
Before I got sick, my biggest hobbies outside of school were photography, video shooting, and video cutting.
I've always considered myself an optimistic extrovert who likes to chat and laugh. Perhaps it is this kind of personality that can support me to persist in a more positive attitude until now
(I'm selling flowers at a stall)
On the days when I was temporarily "disease-free and light" after the treatment, I met many friends, took many photos, and cut the treatment experience and experience of the past year into a short film.
I also tried setting up stalls, buying flowers online and packaging them up and selling them, and whenever someone stopped to watch or pay for my "work", I felt so happy.
The lengthy treatment changed the course of my life, and my biggest regret was the delay in my studies. With a bald head on my face, I watched my friends get into my ideal high school, where I was in chemotherapy, injections, and radiation while I was in military training, sub-disciplines, and adapting to my new school.
(Me during treatment)
I have seriously considered how much of an economic burden it would be for us, an ordinary rural family, to go to a big city like Guangzhou and Shenzhen for medical treatment. Hospitalization has the cost of treatment, rent and water costs, and more than 10,000 after a suppression period of treatment reimbursement, I dare not think about what kind of embarrassing life my parents are living at home, in order to barely maintain my medical expenses. But every time I brought it up, their answer was: "When the money is gone, we can earn it again, and we want our daughter to live well." ”
(Group photo with my mother and sister)
I've met a lot of patients. I am the eldest child in the pediatric oncology department, and many children have been sick since birth, and the age and treatment time are almost equal. Strange to say, before I got sick I didn't like children and thought they were noisy; but when I saw those little patients in the ward, even if their thin little bodies were full of tubes and scars, I would find them cute and distressing.
(In the ward, I play with other small patients)
I've experienced the death of a fellow patient I know, and the thought of "I was so close to death" will flash by, but the next second, I feel lucky for my persistence.
Just half a month after reviewing "No Problem", a small lump grew on my right elbow. I went through another surgery with a knife edge of about ten centimeters. The week of waiting for the pathological results was extremely painful, and I only remember that when I came home that day, my sister said to me with red eyes: "The results came out, it was bad." ”
(The day I knew the relapse metastasis, I saw the sunset)
My illness recurred and the tumor metastasized. The nightmare of 2020 was repeated in 2021, and my sister and I embarked on a journey to leave our hometown for medical treatment.
At Shandong Provincial Cancer Hospital, I started a new round of treatment.
The chemotherapy drugs used this time were heavier than in Guangzhou, and the pain during the suppression period was not reduced at all, and blood transfusions and platelets were also needed. Everything is "familiar and strange", and after the relapse, my mentality is very different from that of the first treatment. For example, this time, I did not take the initiative to meet new patients, because everyone was in a hurry, and it took me a whole year to finally understand that the old time could never go back.
(I'm starting a new journey again))
I recorded my story in two nights. At present, the chemotherapy is over, and I am in radiotherapy, waiting for the second "end therapy".
In the group of patients, "knot treatment" is a great joy worthy of red envelopes to celebrate, will receive a lot of congratulations and encouragement, everyone will also build a high-rise building in the group to "receive good luck", I really hope that the day will come as soon as possible.
(Blessing of knot cure in the patient group)
What happens next? I am not sure, but I am not confused, I only hope to have a stable and smooth future, worthy of the turbulent displacement of these years. I want to return to school to take the middle school entrance examination again, and when I go to the college entrance examination, I will desperately try to enter the university.
From the age of 15 to the age of 16, I underwent 3 general anesthesia surgeries, 18 chemotherapy treatments, 30 radiation therapy in the right hand and 25 radiation therapy in the right arm. I buried PICC and still have an infusion port in my body.
What about cancer, my golden youth, only once.
I believe that I am like every child, growing, losing, receiving, growing.
(All images in this article are provided by the patient)
Expert reviews
Rhabdomyosarcoma is a rare malignancy, the most common soft-tissue sarcoma in children, most common in children under 10 years of age, can occur in all parts of the body, common in the head and neck, extremities, and genitourinary organs; its most common early symptom is a painless mass that grows over time. However, depending on the site of onset, the specific symptoms will also vary.
The tumor classification of the protagonist of this article is acinar type, and the overall recurrence rate will be higher than that of another embryonic type, and it is not uncommon to relapse quickly clinically. But overall, the survival rate of tumors in children is much higher than that of adults, and there are many patients with rhabdomyosarcoma that can be clinically cured.
At present, the treatment of rhabdomyosarcoma in the world is mainly based on radiotherapy and chemotherapy. The child in the text can be said to have received no significant difference from the treatment she received 20 years ago. Although there are many targeted studies abroad and more and more drugs have entered clinical trials, no targeted new drugs have been approved for marketing. This is directly related to the fact that the absolute number of people suffering from diseases abroad is small and the trial promotion is insufficient. We urgently need to promote more clinical trials in China, because the Chinese base is large, and the absolute number of patients is also higher. Promoting the entry of new drugs into clinical trials in China may give children a little more choice and hope for cure as soon as possible.
For pediatric tumors, early detection and early treatment are very important. On the one hand, because childhood tumors occur randomly, it is almost impossible to prevent and screen; on the other hand, because children have a strong metabolism, tumors tend to progress quickly, and delaying for several months may cause earth-shaking changes in the nature and prognosis of the disease.
There are two high incidence periods for childhood and adolescent tumors: the first is before the age of 5 years, and the second is puberty. These two stages of rapid physical development, as a parent must remain sensitive: any place where there is a lump of unknown nature, we must go to the specialist hospital in time for examination, puncture when necessary, can not hold a fluke mentality.
Unfortunately, many people only know leukemia and do not know that children can also develop solid tumors. Many primary doctors are also unfamiliar with childhood tumors. We will often encounter children who have been misdiagnosed many times, the doctor will not think that he is a tumor patient, will follow a variety of other diseases to prescribe treatment, the child is in such an ineffective attempt to delay the best time for treatment. Therefore, our foundation's popular science brand "Sunflower Children" has a very important mission, that is, to promote the whole society's awareness and attention to children's tumors; to help children and parents figure out "what disease, which hospital should go to, which doctor to find", running the right place is the first step to successful treatment.
Author: Aimina, Xiaoyuan
Editors: Wu Jiaxiang, Ye Zhengxing
Proofreading: Wu Yihe | Typesetting: Li Yongmin
Operation: Han Ningning | Coordinator: Wu Wei