Our daughter was born on June 12th 2006. It was the happiest day of our lives. The soft croaking creature that was put on my breast happened to be a girl weighing 4.5 kilogramms and 57 cm long.
"You look so much like your father" - said the midwife – "means you will be happy!"
The daughter was christened Zlata. She grew, ate and developed nicely.
Her birth was the greatest happiness for both of us. We delighted in being parents, so proud of our new family. But the purity of this happiness didn’t last too long.
On December 31 – New Year's Eve of 2007, we were going to celebrate with our parents. Afanasiy was playing with the girl, I was preparing for the ride. Suddenly I noticed that Zlata's glance is a little strange – once in a while her eyes were making circular movements. Only later we learned that this is called nystagmus.
- "Look at this" – I told my husband, - "there's something wrong."
- "Well, your mother is a doctor, isn't she? We'll ask her to take a look. Anyway all the clinics are closed until after the holidays."
My mother said that it's probably nothing serious but it's better to see a neuropath.
Since that day I couldn't sleep quietly. I felt there was something clouding over me, but I had no idea of the hardships we were going to face.
Once the holidays were over we ran to a clinic. After having an examination, the neuropath ordered an ultrasound, but told us to address a specific professor of neurosurgery who had a good record in diagnosis.
The ultrasound examination fo the brain showed an irregularity in chiasmosellar area. The professor sent us for an MRI examination. All this happened in one week – neuropath, ultrasound, MRI.
Professor's preliminary diagnosis was confirmed. – "Your child has a large formation in chiasmosellar area – juvenile pilocytic astrocytoma (glioma of optic nerve).
My knees trembled, my eyes dimmed.
Almost 50 millimeter tumor in the head of my 7 months old baby! The doctors wondered how she still walks, digests food and doesn’t vomit every hour. But back then there were no other symptoms beside the nystagmus in the eyes.
At a consultation in Moscow in Burdenko Institute we were told that the tumor isn't operable, as the removal of the tumor from the optic nerves can lead to total blindness. And that our only chance is chemotherapy, and not even radiotherapy, (usually used in such cases), as Zlata is too young for radiotherapy.
That's how we found ourselves in the department of child oncology and hematology at one of St.Petersburg hospitals. What we saw there was shocking… We were devastated but we had to go on living in order to save our little one.
We spent 1.5 years in the hospital. The rare days at home were like a holiday for us.
At the hospital, almost constantly connected to infusion dripper, Zlata learned to walk, talk, sit on a potty, eat by herself, and all the other things that a child her age does.
The worsening analyses during the chemotherapy, blood transfusion, along with the infection of the central venous catheters that Zlata got installed, courses of antibiotics and a lot of other things. We kept going through all of these for a long year and a half, like walking on the edge.
The MRI examinations didn’t show a decrease in the tumor size, but no increase as well. They comforted us saying that at least it's not growing.
Once the treatment course was over, we were assigned regular examinations once in three months. The first check up was ordered even earlier – after two months. And we didn't pass it…
The moment the chemotherapy was stopped, the tumor began to grow very fast. The oncologists told us that in order to decide on the treatment a biopsy must be performed. They sent us to a consultation with a neurosurgeon.
The surgeon's reaction was definite – to remove the tumor! He said that a tumor of that size can't be taken care of without surgery, even if we pour buckets of chemicals on the girl, or irradiate her all over. He also rejected the biopsy option saying it would be an unjustified trauma for the child. When I asked what about the eyes, he answered that we can start by removing just a part of the tumor, at least 50%, trying not to harm the chiasm – then when the tumor is reduced, the oncologists can start working.
We took some time to arrive at a decision. But Zlata's state quickly deteriorated. She started getting terrible headaches, she fell, vomited. The girl wasn't crying – she was howling from pain, she wouldn't let anyone touch her! Inspite of the blindness threat we decided to remove the formation as fast as possible. We were between life and death and were ready to do anything to save our daughter's life.
The operation lasted 7 hours, the surgeon came out looking exhausted. He told us that more than a half of the formation was removed. But the tumor inflated the optic nerves and the whole chiasm to a shape of a pillow and that both eyes are affected. They did what was possible. Now it’s the oncologists turn. Let's wait for histology results.
Four days later Zlata was transferred from intensive care unit. It took about two weeks until the swelling disappeared. Finally we could see our baby's head and face. But not for long, as the hormones which were prescripted caused her to gain weight very quickly. Her cheeks wouldn’t fit in the hat, and the blouses cracked at the seams.
The obesity was so strong that it made Zlata breathe like a big old man. At times the stomach would press on the diaphragm so strongly that it became scary. The increased appetite was worrying, but it's very hard not to feed a child on hormones. Only an hour after a large meal Zlata, with tears in her eyes, started asking for more soup, meat, vegetables, cookies, anything. She just named all types of food she new.
Of course, after the hormones were cancelled everything went back to normal.
Gradually Zlata lost weight and started eating a little and without appetite.
When she came back home, she spent a lot of time lying down. Getting up only for the potty or to sit in someone's lap. Often she would rub her eyes with her hand or a handkerchief, failing to understand what happened to them – why she can't see anything now. Confused she would start crying.
Of course we were forewarned that the child can loose her eyesight after the operation. But to hear and to accept are two different things… What kept us going was the understanding that it could be worse – we could have lost our child.
Yes - it is terribly painful to look at your absolutely helpless child. But we understand that blindness is not the end – one can live with it. Also the ophthalmologists say that once we win over the tumor, it may be possible to restore the eyesight!
Now Zlata needs to continue treatment. A part of the tumor is still there and it has to be defeated. But much to our regret, in Russia there are no effective methods of treatment for our disease, there is not enough knowledge and experience - that's why the methods learned from overseas colleagues fail to achieve a positive result.
On the other hand, Israeli hospitals and medical professionals have a large experience and have achieved good results in treating children like our Zlata.
On October 20, 2008 we arrived in Israel for two weeks of examinations and consultations at Sourasky Medical Center. Once we have all the results – we hope to start the treatment which can last up to a year and will cost approximately 100000 $. And there are also the living expenses – rent, food, transportation.
We’re a regular St.Petersburg family, where only the husband is working, as the mother has to stay with the ill child. We don’t have such a sum of money. That's whay we ask you for any material help you can offer.
A lot of wonderful people are already helping us, but we're still far from having the needed sum and we can use all the help.
We sincerely hope for your understanding and cooperation. Please help us save Zlata!!!
Continued you may read in the part 'Diary'