We

Our organisation has voluntary membership. But then, there is hardly anyone who became a member of their own will… We are the parents of children suffering from various types of leucaemia, blood and lymph nodes cancer. THIS is what brings us together.

Annually:

20-25 children are diagnosed with different types of leucaemia;

10 children with Hodgkin's disease;

10-12 children with other types of malignant lymphoma.

* What is leukaemia

* Doctors that cure us

* "Man and christian view of the world" - 2004
* The First Ukrainian Meeting of Societies and Groups, Helping Children with or after Oncological Diseases
* Annual Meeting of ICCCPO - Oslo (Norway)
* Regional Meeting of Parent Organizations of Eastern Europe (St. Petersburg)
* CRIMEAN NIGHTS - charity concerts

* WHAT DO WE NEED?
HOW TO HELP US?
HOW CAN WE HELP OURSELVES?

* GRAND PROBLEM: Transplantation of Bone Marrow

* LET A CRANE FLY: The experience of how an organization of parents, whose children are afflicted with leukemia, survive in conditions of crisis

* What for? – Doctor’s thoughts

The Survivor's Day - 2004
* The Survivor's Day - 2001
* The Survivor's Day - 2000
* The Survivor's Day - 1999
* The Survivor's Day - 1998

* "Everything will be well"

* The killer of cancer tumor is ready to fight

Onco-Chat

Here you can download two our leaflets. If you have the opportunity, please, copy them and spread them to other people!

Leaflet 1

Leaflet 2

Our adress and bank account

Our e-mail: novitsky@simfi.net

Our button

We used to think leuñaemia (or blood cancer) was an incurable swift killer that causes a great deal of pain… before IT popped up in our family. From the times back in school we recalled the story of a Japanese girl who never had the time to finish folding a thousand of paper cranes. Her doctor had promised her she'd get well, once she was done with making them.

However, leuñaemia can be sucessfully treated these days. It's not a success every time, alright; it varies. But we have good reasons to be hopeful.

In 1991 Aleksei Ametov was sent to Germany for treatment paid out of the funds raised by parents as a result of the SOS message distributed among the public. If she had lived two more days, another girl that was supposed to go on that trip with him would have made it, too.

This trip arranged by virtue of semi-official connections set off a new development in the life of Valentin Usachenko (Department Chief) and Olga Ivanova - the hematologists of the Children Hospital of Crimea.

The father of the girl who died gave to the hospital all the money collected earlier for her trip saying to Mr. Usachenko: 'You go. And then come back and take care of our children.'

To see what happened next, please read on an abstract from the editorial:

"The peadeatric hematologists with the Children Hospital of Crimea have been one of the first in Ukraine to master the techniques applied by German experts for the acute leukaemia treatment. The new up-to-date method proved very efficient and allows to reach a high survival rate of 70% among the children who were formerly considered terminal. Before 1991 that same rate used to be 3%.

The first three years of practice produced results that were not much inferior to those in Germany. Also the prominent German hematologists Schellong and Rheiter began to support the Crimean doctors and send aid including medicines. That's how one of the Ukraine's top Hematology Departments emerged in Crimea.

Under Professor Shellong's supervision, a group of leukaemia experts began working in Ukraine in April 1993. The group includes 9 national Departments. The doctors from Simferopol, Crimea are on the Board of the Group. Presently under Prof. Schellong's guidance the staff of the Hematological Department of the Children Hospital of Crimea is developing an innovative treatment course for Ukraine which will place the Hospital at the forefront of research and treatment of the malignant non-Hodgkin's lymphoma.'

Now, a few linbes about us, parents. Our 'parent initiative' took the place of the 'missing link' which granted access to German techniques and experts for the Simferopol doctors.

We stage dramas and do the parties with children… We try to find money and medicines wherever we can (and coming by those is one thing, it also takes a lot of sweat to get hold of them! See the Articles under the "The Day of a Recovered Child" ) and any other aid.

TWith the first treatment of our kids a new life began for us. Many things we never paused to ponder on before, or just weren't aware of, became a part of our day. We (mothers, mostly) get hospitalised along with our children and stay at the hospital for the whole time span of the treatment… which is 7 to 9 months. Things that we thought belonged to a bad nightmare, now have turned into common conversation topics and occasionally even reasons for joking.

We do not have the time to learn how to keep together. The time is the luxury we cannot afford. We OUGHT to STICK together encouraging one another and leaning on one another's shoulder. Most of the things we didn't feel like considering the possibility of or had doubts about became painfully evident and crystal clear, and you can remain just as well silent because there's no need to say or prove anything.

One week into the course we begin to realise that our previous preconceived notions about leucaemia had to go. We're not on the death row. People sign in here to struggle for life with a solid determination and hope to come out a winner.

Our children are aware of their diagnoses and the severity of those. Which is the way it should be. No matter the age, you need to know how dangerous your rival is so that you lead a conscious battle against the disease. And when we hit the Department ward - the first week is the worst time ever for us, parents - we are given a booklet titled "What Is Leucaemia?", a translation from German with some funny pictures by children who had gone through the treatment course. And together with our children we keep reading this captivating (isn't that weird?!) and detailed narrative of how the malady evolves and how it will be treated.

Since our kids understand what is happening to them they develop a tolerant attitude towards pain and other ways their system react. They get used to the drop bottles and needles and never act up or complain when they need to put up with them for a day's time, and occasionally, for a week's.

So this is how it comes to pass: a small booklet and people in the white robes - doctors, nurses, caretakers - they all give us the priceless gift of hope.

Not all of our children will get well after receiving treatment. We keep that in mind, too. We cherish the memories of those who we will never see again. And yet we keep hoping, and we still will be when tomorrow comes.

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