I will always consider Irinka* to be my first patient. Her mother Nadia* came to me in tears (which was unusual because Ukrainian women rarely cried, especially in front of strangers). She explained the situation. Her daughter was 8-years-old, and over the past two years had developed a knot in her upper spine. She was in chronic pain, and slowly losing movement in her arm. She couldn’t afford to pay for care, but the doctors in Lviv had suggested she contact a hospital in Warsaw, Poland where she might receive free care since Irinka was a child.
Nadia made a great effort to obtain the proper visas to take Irinka to the hospital there, and the Warsaw clinic agreed to perform an MRI free of charge. The results clearly showed a tumor, however language barriers and time limitations prevented further discussion with the Warsaw doctors.
When they returned to Lviv, the doctors explained that they were afraid to operate because they could not tell if the tumor was cancerous, and if it was, it could metastasize quickly and be fatal. Additionally, the location of the tumor, between C3-C4, was near the brain stem and the doctors felt it was too risky for their facilities.
Nadia did not know what to do next. She had been agonizing over her daughter’s condition constantly, and was not able to receive any response from the Lviv Red Cross. After hearing her story, I met Irinka. She seemed to be a healthy 8-year-old who hid under a baseball cap. She was blonde with freckles, and practiced a couple English phrases she knew. She drew me a beautiful picture of a princess.
I was compelled to try to help her even though I didn’t understand anything about her situation myself. Nadia provided me with her MRI scans, which looked like an abstract painting at the time. I spent a lot of time on my town’s slow internet connection trying to find information about spinal tumors.
I e-mailed an organization which assists American children with spinal tumors, and eventually found the e-mail address for a specialist from John Hopkins. I didn’t think anybody would respond to my e-mails, but they responded almost instantly. The specialist wanted to see the MRI images. The director of the organization wrote a heartfelt message that I later translated out-loud for Irinka’s mother. Nadia cried again.
Over the months to follow many events occurred. First, upon receipt of the MRI images, the US doctor quickly affirmed that Irinka’s tumor was “osteoid osteoma” (a rare bone growth that is not cancerous). The location made the surgery tricky, but he was confident that it did not require great expertise. With the help of Ukrainian Peace Corps doctors, I was able to locate a clinic in western Ukraine that would perform the surgery, and I gave the information to Dana. I am still not sure how she collected funds for the operation, but Irinka finally had her surgery in April 2007, after I had already left Ukraine.
I wonder what would have happened to this young girl if Nadia and I had never met. Would Irinka still be in pain? I think of all those people in the world who have chronic diseases, for whom nobody is there to provide a clear answer or care. In Ukraine (and in many places) there are countless people who cannot get care- who die of cancer without ever knowing what was wrong with them. What a huge difference it made to have people offer free scans, explanations, and eventually surgical expertise. For Irinka, it was the difference of a slow, painful disability, and a normal life.
Soon after meeting Irinka, a father came to me to ask about Cochlear implants for his deaf daughter, Olessya*. She became the first girl in my Ukrainian town to get the implants, and he has written me descriptive letters overjoyed at the number of words she has learned.
Modern medicine is miraculous- the deaf can hear, and suffering is healed. And when they cannot be, even the understanding of disease (insightful communication and compassion from others) can relieve grief and suffering. In the course of a lifetime, we all will experience suffering and death. But, Irinka was an inspiration to me that least everybody should be able to understand their condition and avoid unnecessary additional suffering and disability.
*names have been changed
Posted by Liz 
