Father's letter
Hi all…My name is Ruslan Umirgalievich, friends call me Rus, and a daughter calls me “my Father”. All men want a son or they think so, or society made them think that every man must have a boy… Well, I always wanted a daughter was born to me. The dream came true. I was 33 years old. She was born. What about a name? How to call her? I don’t know. Seems to be not quite Russian and not quite non-Russian. Zholtaeva, Ruslanovna at that. All of a sudden, a friend arrived from Omsk – we haven’t seen each other for 7 years. He came on business in St. Petersburg and my wife gave birth to a daughter that day… Meeting, a daughter, well, he settled the matter…or it wasn’t he… Later. All in all, we were drinking and listing: “Gulchekhra, Gulsara, Natasha”, and a friend Andrey arrived and said suddenly: “I have an acquaintance Alia, a beautiful métisse”. A métisse was to the point, and I thought “Zholtaeva Alia… Alia Zholtaeva” sounded shortly and easterly, as I wanted. I wrote everybody “Alia”. The wife sent me an sms: “Imagine the girl with the sniffles!” Finally, we made our mind…All Russia, Kazakhstan, Yakutia and so on celebrate with us…I woke up in the morning – what an “Alia”? But it was too late, everybody was in the know…Mother arrived to help, I told her the story about the name: here's what had happened, we had been drinking, and had given a name, and she said: “Son, you called her Alia (Aliyushka) in your childhood.”???!!!...
A little digression. Newborns often have heightened bilirubin - the common people call it jaundice and it often passes within several days. We had it for almost two months. A doctor told us over and over again: “She is yellow”. I and my wife looked at her and it seemed to us that she was all right. “And as a matter of fact, - I said, - don’t bother. She is Zholtaeva, that’s it.” Well, generally, the doctor said that she needed sunlight for illness to pass. And where can I find sun in St. Petersburg in winter? There is nothing like that in summer as well. “Turn an office lamp at her and everything will be OK”. So…I rush to the office, tear a lamp down a table…And it was over, gosh! Lamp, or not a lamp, I don’t know…
“What do you mean? – I told my mother. “Then I’ll send you a drawing”, - she said. And that is what she sent me.
I drew it when I was 6 years old.
Guys, I’m not acquainted with most of the people as well as they don’t acquainted with me. I posted photos neither my wife’s nor my daughters’ in social networks to avoid possible negative influence. And now I can’t find a word to express my gratitude to the same social networks, or their active users, to be more precise.
The daughter boarded two planes, 6 and 4 hours, with a temperature and an incomprehensible tube from a lung, to reach a place where I hoped against hope with 5,000 euro in my pocket. A miracle happened because of you. Your transfers of payments allowed us to begin necessary treatment. When I was 19 years old, I transferred 10 rubles to a fund for protection of children who had been suffered from Chernobyl disaster. What was I guided by? An acquaintance of mine whose children had been victims of the disaster and I was not indifferent to her. I don’t know what you are guided by but I think that it is pure hearts which are worthy of life. Your ru.
Mother’s Letter
We had no wedding trip and, nevertheless, we planned to take a trip to Goa this year together. "We'll leave the toddlers in Novosibirsk with our aunt, and when our mother-in-law arrives, we'll dash off. Our kids are healthy, and there is nothing to worry about" – I said. I have always told my husband proudly: "One of them is three years old, the other is two, and along with this we managed to avoid all infantile diseases, which are common among babies at this age." We didn't even remember when the latter got her mouth full of teeth. The time flew by rapidly, somehow, and without many sleepless nights...
Everything began with a usual thing of catching a cold. All of us fell ill. At first father came home having a fever. Then I got ill at once, afterwards - Aliya and Mariyam. But soon we all recovered...everyone except Aliya. Besides, we noticed that she had a restless sleep at night and that she was constantly rubbing her loin. We attributed everything to the recent "flight" from a little child table, but, still, we decided to check her over at an emergency station. The doctor examined her closely, sounded the lungs, palpated her spine. He said her breathing was regular. Answering the question whether it was necessary to have her lungs X-rayed, the doctor stated that there were no indications for that. His only remark was: "You've got her a little bit hot. It definitely has nothing to do with her falling from the table. Probably, catching a cold is the cause." We reached home and we took her temperature, it was exactly 37°C. But there was no fever the next morning and, besides, the toddler was active. Everything could go on well, but one day later the temperature rose up to 37°C again and, thus, all these strange manifestations of the rising temperature began. On the 25th of May, it rose suddenly up to 38,2°C. Then we made a decision to call a local doctor that time. The doctor came, sounded the lungs, looked into the throat and stated a diagnosis - Acute Respiratory Viral Infection (ARVI). And all this was along with the fact that the kid had neither cough nor sniffles, and even her throat was not inflamed! She told us to put anti-inflammatory nasal drops and to splash a spray on the throat and to give an antipyretic as necessary. All these things didn't help, the temperature rose up to 38,2°C again, and, all of a sudden, Aliya started limping on her left leg. We made a paid appointment with the Children's Euromed clinic. We came there early in the morning while the daughter's temperature remained 38,9°C, we submitted blood and urine samples for analysis. The results of the tests were ready in one hour. The doctor checked her up and on the basis of all examinations and findings set a diagnosis of a "bacterial viral infection". Limping was initially attributed to a virus reaction. Antibiotics and antiviral suppositories were prescribed. During 5 days of medical treatment, limping decreased at one moment, but at another one increased again. In the same clinic Euromed, our child underwent ultrasonography of hip joints. The doctors said everything was all right. But limping didn't cease. My husband, being an overcautious person, insisted on going to another commercial clinic "the 21st Century" to consult a traumatic surgeon. The physician examined her and said that limping was not associated with that ill-fated fall for sure and that she hadn't detected any abnormalities in her field. We asked about the radiography again, the surgeon didn't see any need in it. She assumed it to be reactive arthritis, which had to clear up, when the infection was cured, and prescribed topical ointment "Nurofen" for the time being. Meanwhile, the temperature didn't fall, the repeated blood test showed that the overall situation didn't change,, only the Erythrocyte Sedimentation Rate (ESR) increased. The doctor from Euromed advised not to postpone hospitalization and to go to an infectious diseases hospital, as she suspected my child of being down with encephalitis or something of that kind. An ambulance arrived and the medical workers began to persuade us against going to the hospital, but we insisted on it, and, since my daughter didn't have any distinct symptoms, they took us to the Research Institute of Children's Infections, located in Professora Popova street, with a provisional diagnosis of an "acute respiratory infection". Our father stayed alone with little Mariyam (who was then 1 year and 9 months old).
On the 6th of June, we were admitted to the Respiratory Infections Department where a surgeon, orthopedist and neurologist, as specialized doctors, came to us in turn after a number of tests and the first course of treatment with antibiotics in the form of buttocks injections. Each of them denied any possible pathologies in his field. After all, they conducted radiography of spine, following our persistent requests, but only that of lumbosacral spine, in which they didn't detect any pathology (although it turned out later that the radiography was carried out inadequately and the radiograph was NOT sufficiently "informative"). The doctors made a helpless gesture, being unable to understand what was wrong with our daughter. On the 9th of June, they called up a surgeon from the 2nd Municipal Children's Hospital named after Maria Magdalina, who examined Aliya, said nothing, and, on the 10th of June, we were transferred to the 2nd Municipal Children's Hospital with reference to a suspected osteomyelitis. It is a disease afflicted by which a child can lose the ability to walk at all.
Later, the surgeon on duty rebuffed this awful diagnosis, having said that "the joint was sore, it was necessary to find out everything". It was not clear to us why they had actually articulated something that had not been even verified yet. I called my husband immediately to reassure him that the awful diagnosis was not confirmed. However, there was no diagnosis in place, we had to stay in hospital for another indefinite period of time. We decided to ask mother to come from Yakutsk to help, my husband was not able to go to work, while he had to look after the toddler every day, and already within twenty four hours mother was with us, having arrived safely.
Over the next two days, there was no fever detected at all, limping symptoms decreased, our daughter walked a little bit, had something to eat, and even hope sprang up within us that the second antibiotic which they began to inject as early as when she stayed at the Research Institute of Children's Infections, had been effective, and that our little one would soon restore her health. But the temperature started rising again. For 4 successive days (all holidays!) we were hospitalized in the surgical department with no apparent progress, and, on the 15th of June, our pediatrician said that a positive enterovirus analysis had come from the Research Institute of Children's Infections, but it could not (!) entail such a clinical picture, as we witnessed in our daughter. She added also that judging by blood tests, it didn't look like a systemic disease, but according to the clinical picture, it did look like that. In response to a question what was the most likely cause associated with the disease, she said: "I tend to suspect blood cancer (leucosis)".
Ruslan called our home and heard his mother-in-law crying, as she had to inform her son-in-law of yet another horrible diagnosis, which doctors "blurted out".
For a start, it was decided to transfer us to the cardio-rheumatology department of the same hospital which diagnosed our case as "hip joint arthritis". Having listened to our medical history, the Head of department said: "Bacterial nature is obvious here, but it is necessary to locate the focus of inflammation". (Why did they have to scare us with leucosis?) We underwent heart ultrasonography, ultrasound investigation of the viscera, radiography (!) of thorax, but no abnormalities were found. We then had two days of examinations and our daughter had multiple buttocks injections. Her blood sample was taken for leucosis analysis after all. It was half a day of nervous expectations and the results were negative, but in the meantime, her temperature went up to 39.4°C. That was apparent intoxication, as our kid refused to eat or drink. Finally, a decision was taken to put her on a drip, so they moved us to the intensive care unit to insert an intravenous peripheral catheter, at the same time the Head of the department ordered to inject teinam (powerful reserve antibiotic) intravenously. After being on a drip, our kid got a little better, but towards the evening her temperature rose again. The dropper was applied again, this time we spent the whole night in the procedure unit where there was no place to get some sleep. In the morning, the same doctor in charge informed us by telephone that for reasons of the kid's safety she must be taken to the intensive care unit, as it was necessary to make injections constantly, and that day was Saturday, at the weekend (!) they have nobody to take care of our daughter. We were suggested to leave our kid, who was all the time on her mother's arms running a constant fever, alone in the intensive care unit, and, besides, they left us no choice. I will not even try to describe all that we went through during those days. I didn't even go home to my other daughter whom I hadn't seen quite a while, as I had to be close to Aliya, although I was staying in another hospital ward.
We were promised that it was just only for the weekend, and we also hoped she would feel better. But Sunday came, and she didn't get any better, she had the same temperature. The physicians decided to hold a concilium, to which a professor working as a consultant for that hospital, was invited. Incidentally, Aliya had developed diarrhea on that day and that prompted the physicians to issue a diagnosis of "enterovirus infection". It appeared that after a week of so much torture, the "clinical picture" became very typical of precisely that virus. Simultaneously, it turned out that our daughter's hemoglobin dropped, the physicians decided to conduct a blood transfusion, and, as we had always thought that Aliya had the first blood group, the planned donor was her father. He donated his blood, but the transfusion was not carried out because it was revealed at the very last moment that our daughter had the second blood group. Before transfusing the blood, the doctors from the intensive care ward (!) did not even bother to check the blood group, supposedly, because they trusted our suppositions. In the end, the blood wasn't transfused, now the doctors began speaking about their superstition, alleging that someone above is against blood transfusion. A primitive savage approach reigned in the intensive care unit, but as the intoxication was being reduced, Aliya felt better, and nobody went into details, we were just glad that after a week of anxiety we could hold our daughter in our arms at last. When she was discharged from the intensive care ward, the physicians assured us that she had contracted a "severe infection", but was on the way to recovery.
The joy of seeing our daughter was overshadowed by the fact that she still had a temperature of 37°C. In answer to our questions, the doctors said that such things happened. We fully trusted the physicians. In the meantime, there appeared a sense of anxiety deep inside that this was no bottom to it. And, indeed, the temperature started to "climb up". In the pediatric department, we were placed under supervision of the physician in charge. She assured us that our daughter's immune system was weakened, and that caused all of the problems, but they all can be solved by a blood transfusion (!), which was carried out, nevertheless, several days later all in the same intensive care ward. Hemoglobin increased, of course, the test results were fairly good, the ESR decreased from 70 (!!!) to 45, but...her temperature was 38,5°C each day. The pPhysicians cancelled their diagnosis (enterovirus) and started searching for...another virus. And what a "miracle"! They found herpes simplex virus. They now ascribed everything to it. It appeared that it had been the ultimate cause. The worst thing was that the physicians managed to convince us of the fact that it was indeed so in truth and in fact. The point was that besides herpes, antibodies to some other viruses from the same group were detected with Aliya, and jointly they, allegedly, conduct themselves insidiously and result in such a clinical picture. In short, we were prescribed acyclovir tablets which our daughter had been taking with great difficulty for 8 days, at the same time, and thank goodness, those hateful injections were canceled. On completing the course, the temperature didn't go down, but was only increasing. It was at its peak on a Saturday, when a young physician came and said that decision had been taken to prescribe a new antibiotic (the sixth in succession), and again intramuscularly. And when I said that we had been given lots of those antibiotics the physician replied: "Well, that means that they haven't hit the very bacteria". "It turns out that we are taking the wrong sow by the ear, aren't we?" – I asked. The physician said in a confused tone: "Well, apparently, it is just the way it is". When our physician came on Monday, she said that, probably, another infection had joined. They took blood specimen, we had to wait for the results of the blood analysis.
During the whole course of treatment in the department, I told the physicians that, besides limping, leg aches appeared for some time and disturbed Aliya nightly. Falling asleep, she got capricious, kicked with her legs, rubbed them. At first physician tried to convince me that it was because of nervousness, probably, implying the problems with upbringing, then neurologist came and named it - nervous-asthenic syndrome. She prescribed debilitant, but it didn't help at all. The only drug that helped her was Kipferon. They gave it her regularly to bring down the temperature. (I learned afterwards that it was dangerous to give such a dose to a child, as it could cause internal bleeding). Pains didn't fade away, and, when there appeared a version with herpes, physician said it was all because of it. After two weeks from the moment of our hospitalization in this department pains in legs and limping increased. Aliya began asking for taking her in arms more often and refused to walk. Then surgeon and orthopedist came, examined her and didn't see any pathologies in their field again, but recommended to repeat radiography of lumbosacral spine (when it became clear that radiography made in the Research Institute of Children's Infections was bad). Radiography was appointed for 15.07.
Our father started thinking of witches and quacks seriously, he called a homeopath by recommendation just in case. There was one more diagnosis – malaria. It may seem ridiculous, but, after all, we were ready to believe it as well. The mother had stayed with us for a month, but then she had to come back home to her work, and we let Mariyam go with her with a heavy heart.
On 14.07 Aliya had got strange coughing, but when the physician came and sounded her lungs, she said: "Everything is clear here", but then she added: "I think, it's not of viral nature, something else..." And that was said after we had fought viruses almost for three weeks in a roll!!! On 15.07. coughing increased, the physician sounded with a serious look on her face and said nothing. They made radiography of loins and, also, that of thorax without letting me to know about it. Physician said the loins were all right and she noticed in the left lung a small "infiltration". But it was necessary to render the radiography and that was likely to be done on Monday, as the 15th was Friday. For the time being she prescribed antibiotic injections, which were supposed to be injected till Wednesday, and then it was necessary to conduct a repeated radiography, and if it would not have shown any improvement, then it would be necessary to make Magnetic Resonance Tomography (MRT). Concerning limping the physician said: "You want to get everything at once, wait, let us "draw out one thread first", by that the examination of the lungs was meant. During the whole treatment I was told constantly to wait for the results of analysis first, then for reaction of organism, or for something else. We had to wait till Wednesday. The thing horrifying was that baby's state became worse appreciably, and physician kept talking about her great concept of treatment, that was "on her mind", and she didn't think that because of the injections the state of mind of the child suffered so much that one word caused hysterics and then they had to inject antibiotics three times a day. We doubted about these injections because taking the wrong sow by the ear went on, and the diagnosis was absent. Besides Aliya slenderized. All that became unbearable. That day, my husband and I made a decision to take our baby from the hospital. We didn't want to go to another hospital, we decided to fly to my native town Yakutsk where my parents had lived, and my junior daughter stayed with them, Aliya and I had not seen her from the sixth of June. Of course we hadn't even thought about something so awful when we dared to fly so far. Upon arrival we planned an examination at the medical center of Yakutsk where a physician of 20 year experience, an acquaintance of mine, worked.
I told our physician in charge about this decision and asked for discharge from the hospital. Physician changed her look and said that it wasn't allowed to discharge a child from the hospital with such a state, and she began begging us to change up our mind. I was holding Aliya in my arms, they were trembling, but I stated that I could not stay due to family circumstances. My decision became more firm at the moment when I heard a monologue of our physician in the lounge by accident. "First, she is dysontogenetic! Nobody can ever cure her leg" – she almost shouted these words, allegedly, this young mother has neglected her child for 3,5 years, and now she wants doctors to solve all accumulated problems all of a sudden. She continued in such a way but I didn't keep on listening and went to the ward to collect all my things. I booked tickets at once. There were 4 hours left before the flight, the doctor called the Head of Department. The woman came in the ward with an indifferent look on her face and asked if we intended to fly for sure. When she understood that our decision was firm she asked where we were flying to and if there was a hospital there. She added also: "Try to understand, it is a pity that so much work is done and we have just grabbed the "thread", and you are taking away your baby." That was after 2 months of our "treatment" in their hospital, and they have just grabbed the thread! It's not the baby's health what really worries them, that were their own ambitions! I understand there are some difficult cases, some diseases are difficult to diagnose, but is it not possible to diagnose tumor in 2 months?! It happens now when this disease is so frequent. What is it? Absence of knowledge? Total indifference? Or banal money saving? Probably, computer tomography costs the hospital too much? Perhaps, it is much more expensive than old Russian "maybe". Maybe things will settle one way or another. Maybe this antibiotic will take effect. Maybe some other symptoms will appear. And in the meantime the life of a baby is jeopardized...
I had three hours to collect the things. Father stayed with Aliya, whom we told that we were about to fly by plane. She became more cheerful and began shouting: "Hurray! We will fly by little plane!" On the whole, she kept a stiff upper lip afterwards, being glad to be free from hospital captivity and to meet Mariya soon.
Thus our dad stayed at home all alone...
During the whole flight Aliya was sleeping, I had to use the thermometer and an antifebrile only once. The long-expected meeting with the little sister took place early in the morning by local time. Because of excessiveness of emotions Aliya even ran and played for a while, but some time later she felt worse, and then she was always in my arms. On the same day, on Saturday, we arrived at the medical center (the 1st Municipal Children's Hospital), where through the kind involvement of mother's friend (some palms need to be greased) the computer tomography of thorax wasmade at once. The results shocked everyone including physicians. Some turbidity was seen instead of the left lung on the pictures. The first supposition was disintegration of the lung, from which only the top was left. I remembered at once the words of the doctor from Saint-Petersburg: "It's all clear here". I was walking down the hall with Aliya in my arms, my legs were feeble because of fear, my first thought was how could they miss such a thing? Where did they look? And then only one thing sounded in my head: "God, don't take away her from us now!" Later it was found that 500 cm3 of liquid were detected in the pleural cavity(!), besides that, a new growth of a large size was found, we didn't know where it was located at that time. We only knew that we had to live with this liquid and horror inside till Monday. The same day mother's friend (I thank her for great help and care) got Aliya on a drip with glucose at home in order to reduce the intoxication a little. During the whole evening Aliya kept a stiff upper lip. We spent Sunday normally excluding the fact that liquid went on accumulating and began pressing everything inside her strongly, because of that she didn't sleep at night and in the morning she uttered a cry, obviously due to pain, but she never said: "Mom, it hurts me" or something like that.
We had to call our father and to "kill" him with a horrible diagnosis again...
On Monday we went to hospital early in the morning, knowing beforehand that they would take her to the reanimation ward for long, as it was necessary to pump out the liquid and carry out biopsy. Having examined the picture, oncologists supposed it to be malignant tumor, taking into account the medical report and the state of Aliya. 350 ml was pumped out of her, having made a repeated computer tomography, they saw the lung straightened up, the size of the tumor remained the same. Then we were told the tumor was large, it was located in rear mediastinum along the spine and came into the abdominal cavity.Oncologists supposed neuroblastoma. The next day biopsy was conducted and paracentesis of bone marrow was carried out. One part of the material investigated in the laboratory the other was sent to the Blokhin Insitute in Moscow. All treatment was coordinated by specialist from Moscow, who sent protocols of treatment. First we needed to receive the results of pathology from the Blokhin Center which were ready only in 5 days. Our father went to take them on the appointed date. A medical worker said: "Yes, the tumor is malignant, but analysis is not made to the end. We need histochemistry, but we don't do it now. Everyone is on the leave. Come in September"(!!!) At this time we were waiting for the conclusion from the laboratory which they were to send by fax. When the physician read the fax and saw that there was no diagnosis she called the lab herself. She heard the same answer and was shocked. Then she agreed with the head of the lab to make an appointment in other hospital. Our dad was angry by all that and shouted; "Damn them all..." He lost his patience. He decided to bring the child to Israel where good specialists work and would help though for a good sum of money. The physician said the baby could endure it all, but the tube from the cavity had to remain. Our parents bought the tickets. Though physicians were ready to begin treatment they recommended to go to Israel where the conditions were better. We could not risk. There was a chance to save the life of our baby. Someone recommended to undergo treatment in Saint-Petersburg in the R.Gorbacheva Oncological Center, by some quirk of fate, situated near our house, but who would wish to be treatedin a place where one had been killed almost?
P.S. We are often told why we do not receive treatment in Russia, one can be treated well in our country too, the oncological centers are not bad, moreover, the treatment is free of charge. Iinsisted that the mother should write this letter. This text can not described everything we have gone through, and probably it's better not to know at all which hospitals are good and which ones are bad. I wish you all good health. The mother had been writing this letter for three weeks, it was difficult to do it, on the second day she realized what we had come across and she was crying all night long. I asked at work to prepare some links with examples and having read them, recovered myself only on the third day. I am not sure what exactly this letter is meant for but I guess this is the answer for those asking about the reason of our presence here.
Guys, we love our daughter so much! Nina and Ruslan.
http://www.facebook.com/#!/groups/237099429663098/
http://vkontakte.ru/club29063194
http://www.odnoklassniki.ru/#/group/51839175426167
http://help-alia.ucoz.ru/
http://www.podari-zhizn.ru/child.php?id=448
http://www.podari-zhizn.ru/child.php?id=415
http://www.podari-zhizn.ru/child.php?id=496
http://www.podari-zhizn.ru/child.php?id=455
http://koolinar.ru/blog/comments/3769
http://www.medkrug.ru/community/show_thread/741?thread=33808
http://www.medicaltourisrael.com/?p=1110
