Helping Katerina's Treatment
Donation protected
In February 2017 my 17 year old daughter Katerina was waking up at nights crying from pain in her left knee. Thinking nothing of it we calmed her down, gave her some pain relief e.g. panadol and she would go back to sleep. After approximately 2 weeks we took her to a G.P. and had an MRI scan on her left knee, which showed a little inflammation in the knee but nothing to be concerned about and given some anti - inflammatory medication and some knee strengthening exercises. Unfortunately, by the end of March the pain was getting more intense, she could not tolerate standing for too long and started complaining of numbness. We took her back to the G.P. and after doing a few tests with a pin he asked for and MRI scan of her spine.
What unfolded from that MRI was the beginning of terrifying nightmare. The scans showed a tumour, the size of a large egg in her L5 and L4 vertebrae, which had engulfed 2 nerves that control the thigh muscle, hence the pain in the knee. After being referred to top neurologist Katerina had to endure a very painful biopsy in the spine to determine what the tumour was. The results of that biopsy showed that the cancer was Sarcoma, but they could not classify it, so we were referred to the Sydney Children's Hospital, which is better equiped to deal with these cancers.
The Children's Hospital, asked for more biopsies from her spine, which were very intensive and painful. Samples were sent to various centres in Australia and Boston Cancer Research Centre. After approximately 2 weeks the results of the biopsy showed that the cancer was definitely a Sarcoma and it was classified as Myeloid, Epitheloid Sarcoma. We were told it is so rare, that there is no literature or treatment plan for this type of cancer.
After a lot of meetings between the Sarcoma specialists and the neurosurgeon it was decided the best option for Katerina, was major surgery in her spine to remove the tumour, and radiation treatment after that.
Katerina endured a 15 hour operation, which involved surgery from the front and from the back. The L5 vertebrae was completely removed and part of her L4 vertebrae was taken out and replaced with a plastic cage to rejoin the spine. Also the two nerves that control her left leg were sacrificed which means her left leg is now permanently disabled. After recovering from surgery Katerina had six weeks of radiation and physiotherapy to strengthen her body and how to deal with her disabled leg.
Whilst everything was looking good, Katerina started feeling pains in her shoulders and again thinking it was due to physio, (even the doctors agreed) thought nothing of it until in one of her regular examinations a cyst was noticed in her belly and more scans were done.
The results of the scans were again devestating, the cancer had come back and had spread to other parts in her body. Our only option now was aggressive Chemotherapy. So Katerina was urgently booked in for day surgery and a central line was put in for her treatment. That was in September 2017.
Katerina endured 6 rounds of aggressive chemotherapy which meant she has spent more time in hospital with mum by her side, then home, putting enormous pressure and stress to the family. The scans after the 6th round of chemo, showed most of the metastasised cancer was eradicated, the one in her spine was still there.
We were told there was a trial drug available but we needed to meet certain criteria regarding blood levels, so it was decided to keep going with a different type of chemo to control the cancer. Unfortunately during this time the trial drug was removed from the market, and the cancer in Katerina had re-flared and metastasised.
Katerina had to endure more scans and more painful biopsies to try and find a targeted drug to this type of cancer. She is now on a different chemo drug which we hope will be more effective, while we wait for alternatives.
Fighting to keep our daughter Katerina healthy and vibrant as she was has put enormous financial burden on our family. My wife Debbie had to give up work last year to be with Katerina, because Katerina needs assistance 24-7.
Unfortunately paying our daily bills and a mortgage for the pst year, with had been very draining and stressful.
We have resisted in asking for help in the past in the hope that Katerina's situation will improve, but it hasn't. so we have decided to ask for help from our friends, relatives and acquaintances to allow us not only to be by her side in these difficult times, but also to help in her treatment and therapy to deal with her disability.
Katerina is now 18 and had her birthday in hospital, we had Easter in hospital and Christmas in hospital. Chemotherapy has had given Katerina a few side-effects as well. She has kidney stones, weak and brittle bones and blood clots. As you can appreciate her road to recovery will be long and hard and that's why we need all the financial help we can get.
What unfolded from that MRI was the beginning of terrifying nightmare. The scans showed a tumour, the size of a large egg in her L5 and L4 vertebrae, which had engulfed 2 nerves that control the thigh muscle, hence the pain in the knee. After being referred to top neurologist Katerina had to endure a very painful biopsy in the spine to determine what the tumour was. The results of that biopsy showed that the cancer was Sarcoma, but they could not classify it, so we were referred to the Sydney Children's Hospital, which is better equiped to deal with these cancers.
The Children's Hospital, asked for more biopsies from her spine, which were very intensive and painful. Samples were sent to various centres in Australia and Boston Cancer Research Centre. After approximately 2 weeks the results of the biopsy showed that the cancer was definitely a Sarcoma and it was classified as Myeloid, Epitheloid Sarcoma. We were told it is so rare, that there is no literature or treatment plan for this type of cancer.
After a lot of meetings between the Sarcoma specialists and the neurosurgeon it was decided the best option for Katerina, was major surgery in her spine to remove the tumour, and radiation treatment after that.
Katerina endured a 15 hour operation, which involved surgery from the front and from the back. The L5 vertebrae was completely removed and part of her L4 vertebrae was taken out and replaced with a plastic cage to rejoin the spine. Also the two nerves that control her left leg were sacrificed which means her left leg is now permanently disabled. After recovering from surgery Katerina had six weeks of radiation and physiotherapy to strengthen her body and how to deal with her disabled leg.
Whilst everything was looking good, Katerina started feeling pains in her shoulders and again thinking it was due to physio, (even the doctors agreed) thought nothing of it until in one of her regular examinations a cyst was noticed in her belly and more scans were done.
The results of the scans were again devestating, the cancer had come back and had spread to other parts in her body. Our only option now was aggressive Chemotherapy. So Katerina was urgently booked in for day surgery and a central line was put in for her treatment. That was in September 2017.
Katerina endured 6 rounds of aggressive chemotherapy which meant she has spent more time in hospital with mum by her side, then home, putting enormous pressure and stress to the family. The scans after the 6th round of chemo, showed most of the metastasised cancer was eradicated, the one in her spine was still there.
We were told there was a trial drug available but we needed to meet certain criteria regarding blood levels, so it was decided to keep going with a different type of chemo to control the cancer. Unfortunately during this time the trial drug was removed from the market, and the cancer in Katerina had re-flared and metastasised.
Katerina had to endure more scans and more painful biopsies to try and find a targeted drug to this type of cancer. She is now on a different chemo drug which we hope will be more effective, while we wait for alternatives.
Fighting to keep our daughter Katerina healthy and vibrant as she was has put enormous financial burden on our family. My wife Debbie had to give up work last year to be with Katerina, because Katerina needs assistance 24-7.
Unfortunately paying our daily bills and a mortgage for the pst year, with had been very draining and stressful.
We have resisted in asking for help in the past in the hope that Katerina's situation will improve, but it hasn't. so we have decided to ask for help from our friends, relatives and acquaintances to allow us not only to be by her side in these difficult times, but also to help in her treatment and therapy to deal with her disability.
Katerina is now 18 and had her birthday in hospital, we had Easter in hospital and Christmas in hospital. Chemotherapy has had given Katerina a few side-effects as well. She has kidney stones, weak and brittle bones and blood clots. As you can appreciate her road to recovery will be long and hard and that's why we need all the financial help we can get.
Organizer
Michael Michalakis
Organizer
Punchbowl NSW
