Our daughter, Anastasia Sysoeva, is 20 years old and a student. Nastya was a healthy, athletic, and cheerful girl.
In February, Nastya started coughing and had a fever. Like most children her age, she dismissed the illness as a common cold. When, at our insistence, Nastya went to the doctor, she was immediately sent to the hospital. They wouldn't even let her out to get her things. She called us herself and said through tears: "Don't worry, but they've found a tumor.".
The world turned upside down. We'd already been through a similar situation in our family, when our youngest daughter, under three, was mistakenly diagnosed with — cancer. I repeat: WRONG. We prayed that this time, too, there would be a mistake.
But our hopes were dashed. Nastya was diagnosed with a massive tumor in her lung (9,2 cm). Based on the results of tests, biopsies, and other examinations, she was given a terrifying diagnosis: — Hodgkin's lymphoma (nodular sclerosis) with lung involvement. She also had thrombosis of the left internal jugular vein. Treatment had to be started as soon as possible. Nastya had seizures every night, and the tumor was compressing her aorta, carotid artery, and subclavian artery. During the seizures, she would lose consciousness. — We had to call an ambulance.
We frantically tried to figure out what to do. We "called" all the doctors we knew in Odessa, and visited Kyiv and Poland. Ultimately, we realized — that to give Nastia a better chance of survival, we needed to go to Germany or Israel. But in Germany, they demanded that we officially confirm we had the full amount for treatment. That was unrealistic. That left Israel. We looked for a clinic that specialized in oncology. Bypassing expensive intermediaries, we directly "contacted" the Ichilov Clinic in Tel Aviv. It's a public hospital, ranked among the top ten clinics in the world for cancer treatment. This was our chance to save our daughter.
We flew to Israel. Back in Kyiv, doctors warned us about the risk of a blood clot and prescribed a blood thinner, which we still inject into Nastenka's stomach twice a day. So, during takeoff and landing, we held each other's hands tightly, fearing the strain.
In Israel, we had to repeat all the diagnostic tests, including another biopsy. It turns out that the previous tests had been inaccurate, and doctors in Poland and Ukraine weren't authorized to reliably diagnose the type and severity of the disease and, consequently, prescribe treatment. After this, we were finally confident in our choice of clinic.
Our daughter was initially prescribed 12 chemotherapy, which may be followed by radiation therapy. As the treatment progresses, depending on the results, the treatment plan may change. Complicating matters is a huge blood clot measuring 5x4 centimeters, which is located in Nastya's jugular vein. According to the doctor, if a portion of the clot breaks off and travels to the lung, it will result in a fatal outcome in more than 90 percentage of cases — . Therefore, we are currently forced to stay in Israel and rent an apartment. Even though we live in a Tel Aviv suburb, an hour's bus ride from the clinic, the rent is almost 2000 dollars a month. Israel — is a very expensive country.
Nastya's treatment will be long and repeated, and the cost of this treatment is prohibitive for our family. If you can, please respond to our plight.
We understand that these are very difficult times for everyone, but perhaps every parent will understand. After all, when your child's life is at stake, any means necessary will be appropriate. Your help can extend beyond monetary donations. — If you can, please pray for Nastya. May no one ever experience what we are going through now. — After all, no amount of money will guarantee our recovery, but it will only increase our chances of beating the disease if we receive quality treatment.
We ask God for everything to be alright, for our Nastya to regain her health. And for all children to be healthy, and for their parents not to go crazy with the thought of losing their child.
HELP US SAVE OUR DAUGHTER! WITH YOUR HELP AND GOD'S SHE WILL HAVE A BETTER CHANCE OF SURVIVING.
Sincerely, the Sysoiev family.
For the ways you can help, see here.
02.02.2021
Anastasia's illness has not subsided, but it does not require active intervention. Currently, she is only undergoing follow-up examinations, for which funds have been raised, so the decision has been made to close the application.
A huge thank you to everyone who has shown concern and supported Nastya all this time.
03.12.2020
Hello! Unfortunately, the coronavirus has reached my family too – my parents and I have fallen ill. I'm in terrible shape. But I need to get better soon, because at the end of the month I'll be undergoing another examination to determine the status of my tumor. Sometimes I have chest pain in that area, but the tumor itself doesn't bother me. The latest scan showed that it's stable in size and continues to accumulate contrast. I'm trying to live in the present and hope that one day all of this will finally end.
Thank you to everyone who supports me!
Nastya Sysoeva.
13.01.2020
Good afternoon everyone!
The results of the follow-up PET-CT are ready.
Everything remains the same.
The tumor hasn't changed in size, but it continues to absorb the contrast agent, meaning it continues to glow.
Therefore, we still haven't received the magic word «remission» we still haven't received it.
We've decided to wait and see how the tumor progresses again.
Treatment is not yet prescribed, as in this situation, chemotherapy could do more harm than good.
I'm left with a bad feeling, because I so wanted it all to be over.
Uncertainty again.
It's like I'm sitting in silence, in a trench, waiting for shots to ring out, not knowing if the enemy has retreated or is lurking somewhere nearby.
Once again, living from one checkup to the next, hoping for a miracle.
I'll wait for my next checkup and hope that one day they'll tell me I'm healthy.
I'd like to once again say a huge thank you to all the people who are helping me!
Sincerely, Nastya.
23.05.2019
Good afternoon everyone!
The latest scan leaves us tense again. The tumor is still in place. It hasn't grown in the last three months. This means its growth has stopped. However, unfortunately, the accumulation of the contrast agent, which determines the activity of cancer cells, has increased compared to the previous scan.
The doctor didn't dare prescribe a new course of chemotherapy at this point. After all, if a clot of fibrous tissue that doesn't receive blood is glowing, we'll only be needlessly poisoning the body with chemotherapy. We also can't try to remove the tumor core, as it's permeated with blood vessels and has grown to the aorta. And if it's removed, we'll have to remove it along with the adjacent organs it damaged.
We've decided to wait a few more months to allow the body to recover, as each checkup requires oral administration of a radioactive substance. Rehabilitation must be maximized. It's essential to restore the immune system and undergo regular blood tests to prepare for the next stage of treatment.
With great respect and gratitude, the Sysoev family.
19.02.2019
News from Elena Sysoeva: "When we were told we were in remission, we were, of course, very happy. There were tears of joy, even a kind of euphoria. But then both Nastya and we were overcome by a strange feeling – for several days we felt lost, as if we didn't know how to live. We chalked it up to the fact that we'd been uprooted from our normal lives for a whole year and thrown into the whirlwind of all the events associated with saving Nastya's life, and we simply still couldn't get over it. But it turned out that our bad feeling was justified. Life had once again given us a «surprise». After all, how many times have we learned that we can never completely relax?
In the morning, we arrived at the clinic to have Nastya's staples and stitches removed. Everything was done without any anesthesia. The threads and staples were removed «while she was still alive». Nastya was in discomfort and extreme pain, but she tried to endure it, hoping this would be her last torment. Afterward, we headed to the surgeons for a final examination. That's when it all started. One of the leading surgeons noticed that the tumor tissue removed for analysis was hard. This only happens after radiation therapy or if the disease is still active. But Nastya hadn't undergone radiation, so the tissue should have remained soft. The surgeons called the lab and our oncohematologist. Ultimately, they wanted to immediately convene a consultation and have Nastya undergo surgery for a continuous incision—a thoracotomy. The second option was to wait and have another scan (PET-CT) in two months to see how the tumor was progressing. We agreed to the second option, and the doctors supported our decision. Now we face two months of tense anticipation and a follow-up examination, which we sincerely hope will show a positive result. Otherwise, the question of another operation will be brought up again. Both we and the doctors are perplexed by everything that's happening. Once again, Nastya's unusual situation with her unusual tumor is confirmed. The only good news is that for now she's been sent home to gain strength and recover from the surgery."
15.01.2019
So now we have some certainty. We received a call from an Israeli clinic informing us that the doctors have decided to perform a thoracotomy. Moreover, as several friends who know doctors in Israel told us, everyone there knows about Nastya's situation. Our doctor has sent her medical records to leading doctors at other Israeli clinics to get the opinions of other specialists.
28 We have a meeting with the surgeon in January, where they'll explain everything and schedule the surgery.
We only bought one-way tickets because we don't know when we'll be able to fly back home. After all, after the surgery, we'll have to stay in the clinic for several weeks under observation.
Unfortunately, Ukraine International Airlines hasn't resumed their free tickets program for seriously ill patients, so we had to buy them at full price. The clinic told us the approximate cost of the surgery is 20000 $.
Plus, there are doctor's appointments, tests, medications, etc. We'll have to rent an apartment near Tel Aviv again for a month. Therefore, we're now reopening the fundraiser, since there are only a few weeks left before the surgery. And all this is just for diagnostics to determine further treatment.
As the doctors say, Nastya's case is unusual. What further treatment will be is still unknown.
Thank you so much to everyone for your concern for Nastya's life, for your support and help!
28.11.2018
Nastya completed all IVs of her fourth course of high-dose chemotherapy at an Israeli clinic and returned home. Here, she continued taking oral «chemotherapy» and yesterday was her last day of taking these medications. Nastya continues to receive daily injections of the blood-thinning drug CLEXANE into her abdomen. Apparently, due to the interaction of «the chemotherapy» with blood, burgundy hematomas formed at the injection sites. They injected me again with an expensive (1500 $), but very effective,immunostimulant. We're currently a bit tense, waiting for my body's reaction to this drug. The peak usually occurs on 3-4 day. Muscle pain, bone aches, high fever, dizziness, mucous membrane damage, nausea, and weakness—that's the «bouquet» side effects from chemotherapy and the immune stimulant. Last time, her temperature soared beyond the maximum permissible limit, and the oncologists were divided. In Odessa, they assured us it was an adverse reaction to the immune system stimulant, while in Tel Aviv, the doctor was leaning toward some kind of inflammatory process. And that, in this situation, is very dangerous. We'll see how it goes this time. Nastya's general condition is currently characterized by two words: weakness and fatigue. Before the PET-CT scan, scheduled for 17 December, there will be a break in treatment to allow any remaining chemotherapy «to be flushed» from her body. This is necessary to prevent any areas of the body from glowing on the CT scanner due to the chemotherapy drugs and being mistaken for new tumor sites. We hope that during this time, her body will rest and her immune system will recover naturally. We're really hoping for a good response to the treatment. We're eagerly awaiting the test and its results. We really hope that everything will be fine for Nastya soon.
With great respect and gratitude, the Sysoyev family.
27.10.2018
Three days of IV chemotherapy have passed, and Nastya continues to take oral «chemotherapy» — the drug Procarbazine. After a month and a half break from treatment, Nastya's hair has started growing again. But, unfortunately, in a week it will start falling out again. In addition, her toenails have begun to deteriorate and fall out. This is the first time we've encountered this. This is all a consequence of «the work» chemotherapy drugs. The doctor reassures her that everything will grow back but she still feels a bit uneasy. Nastya continues to take medications to alleviate the side effects of chemotherapy: OMEPRAZOLE (to protect her stomach), ALLOPURINOL (to relieve pressure on her kidneys), and PREDNISONE (a glucocorticosteroid – for pain and to support her psycho-emotional state).
A big thank you to all the caring people who help and support Nastyusha.
Sincerely, her parents.
10.09.2018
Nastya's hemoglobin level is very low, and a donor blood transfusion was prescribed to increase her red blood cell count. Moreover, Nastya can no longer receive regular blood, only irradiated blood. We were asked to sign an agreement for the blood transfusion, as there is a risk of hepatitis or HIV infection. Her body reacted ambiguously to the foreign blood. - Nastya felt very ill, felt extremely weak, and developed blotchy skin. She had to be given an additional anti-allergy medication. Furthermore, her kidney inflammation was detected, and the doctor prescribed a course of antibiotics. Before the surgery, which we'll discuss below, it's necessary to eliminate all inflammatory processes in the body. PET-CT results showed that aggressive chemotherapy had failed to eradicate the tumor, and an active portion remained. Now, it's necessary to puncture Nastya's breast a third time to collect a sample of the active tumor for examination. The tumor is now in the active portion of the tumor ... The tumor is now in the active portion of the tumor. The tumor is now in the active portion of the tumor. The tumor is now in the active portion of the tumor. The tumor is now in the active portion of the tumor. The tumor This needs to be done to determine why the tumor remains active and how to further treat it - finish it off «with chemotherapy», conduct a course of radiation, or perform a bone marrow transplant. But the pulmonologist refused to perform a regular biopsy, fearing it would damage vital organs, as the active portion of the tumor is located near the heart and aorta. There is only one solution - to open the chest. If I'm not mistaken, this operation is called a thoracotomy. Oncohematologists, pulmonologists, and thoracic surgeons will meet at to decide how to perform the surgery, as there are several types of incisions. The surgery can take from 3 to 5 hours. After the surgery, hospitalization is required for 5 - 10 days, unless there are complications, as drainage tubes will remain in the chest in to prevent blood and air from accumulating. The cost of the surgery is not yet known. A preliminary invoice will be issued after the consultation to begin preparations for the surgery. The final payment will be presented after the surgery, in depending on complications and the number of days of hospitalization. We are very worried about Nastya. Fear rises from somewhere below and fills everything around us. But still, I desperately want to believe that everything will be fine.
Thank you very much to everyone who helps and supports Nastyusha.
Sincerely, the parents.
