My sister Melissa needs your help to find a bone marrow donor.
Melissa was born in 1975 and was the youngest of four children. She was always a quiet kid and ever so smart and sensible! She was dux of her year level almost every year in high school and knew from a young age that she wanted to be a forensic pathologist. After years of study she finally achieved this goal in 2008. Our family was so proud of her and we would often brag about “our sister”, the forensic pathologist, one of only ten in the state of Victoria at the time
In July 2013, our world was turned upside down. After being itchy for a couple of months and then discovering some lumps in her neck, Melissa was diagnosed with stage 3 Hodgkin’s lymphoma. She was 38 years of age and a mother of two young children. She started writing a blog, ‘I Got The Good Cancer’, named in jest as she was tired of being told how lucky she was to have the good cancer.
Melissa underwent 6 months of chemotherapy and was told there was an 80-90% chance she would be in remission, or cured, at the end of this. Unfortunately, things did not go to plan. Despite an early scan showing the lymphoma was almost gone, the scan at the end of her first 6 months of treatment revealed that the disease had progressed. Melissa had primary refractory Hodgkin’s lymphoma.
The next stage of treatment involved much more intense chemotherapy requiring week long hospital admissions, followed by an autologous stem cell transplant (a transplant using Melissa’s own stem cells). After 2 cycles of chemotherapy, a scan showed that she was in complete remission. We’d waited 9 months to hear those words and although we were relieved, we knew it wasn’t the end of the road. She still had to get through the transplant.
The relief was short lived. Unfortunately on the day of this scan, Melissa was admitted to hospital with a fever. She spent the next 3 weeks in hospital with a severe lung infection that almost claimed her life. She was so gravely ill that she remembers very little of this time. The words of one of her haematologists, “I’m afraid she may not make it” will haunt me forever.
Nine months of chemotherapy and high dose antibiotics to treat the lung infection meant that her bone marrow was not in good shape and an attempt to collect her stem cells for the upcoming transplant was unsuccessful. Her doctors decided to wait another month to allow her bone marrow to recover before attempting another collection. This was yet another delay she did not need.
In the meantime, another scan was performed and we were all devastated to learn she had relapsed. She went ahead with the transplant as doctors felt this was still her best chance of achieving remission. She was discharged in early July but remained completely exhausted and severely anemic, requiring regular blood transfusions. Simple tasks we all take for granted like having a shower would either be impossible to attempt or exhaust her to the point of vomiting. Melissa enjoyed a holiday in Bali just five weeks after being discharged, accompanied by about 20 family members and friends. After cancelling two previous trips to Bali because of her treatment, she was determined she was not going to miss this experience with her loved ones.
Upon returning home from Bali, Melissa had a scan to see if the transplant had worked. She knew in her heart that the results were not going to be good so she waited a week to get them so as not to ruin the surprise 70th birthday party she had helped organize for our mum. She had previously always found a way to get her results earlier. I was at the appointment, along with our other sister, when she was told that not only had the transplant not worked, the lymphoma had progressed and was now in her lungs and bone marrow.
Her Professor suggested that the best course of action was to commence a drug called Brentuximab. This drug has shown extremely positive results in clinical trials with 94% of people with refractory Hodgkin’s lymphoma responding positively. It has been given accelerated approval in the US, UK, EU and Canada but is not yet available on the PBS (Pharmaceutical Benefits Scheme) in Australia. This means patients in Australia have to pay for it and at $10,600 per treatment it is not cheap!
Melissa’s Professor is recommending three treatments followed by a scan to assess the response. Assuming she responds positively, she will then continue on with further treatment up to a maximum of 16 cycles (a total cost of $169,600).
My little sister is amazing. She is the strongest and most resilient person I know. Just a month after she was diagnosed with cancer, she separated from her husband and has had to raise two young children, Madeleine, now aged 7 and Sebastian 2, as a single mother whilst going through this ordeal (with the help of our wonderful mum). And being a forensic pathologist, she has understood only too well what has been going on, whilst the whole time shielding her family from the harsh reality.
Throughout her treatment, she formed and co-captained a team which raised over $70,000 for women’s cancer at the Peter MacCallum Cancer Centre. She did this to show support for a close school friend who was being treated for breast cancer at that hospital and who had been diagnosed just 6 months before her. That is just the kind of person Melissa is, always aiming high and putting others before herself.
At the moment, Brentuximab is Melissa’s only hope of achieving remission. Her Professor thinks her only chance of being cured is to have another stem cell transplant using donor stem cells. Sadly, her siblings are not a match and a worldwide donor search has been underway for months but no donor has been found. Melissa is having Brentuximab. There is no doubt about this. She wants to see her children grow up, get married and have children of their own, and we want her around for many more years too. As soon as I heard about the price, I told her we would fundraise and find the money to pay for it. Being the selfless person that she is, Melissa had to be convinced that this was the way to go. She was extremely uncomfortable with fundraising purely for herself so she said we had to aim higher. And we will.
I have started a campaign called ‘I Got The Good Cancer’ to tie in with Melissa’s blog. Our primary goal is to raise the money to cover the cost of Melissa’s treatment but we hope to raise even more. Funds raised in excess of what Melissa needs will be donated to Lymphoma Australia and will be used for things such as covering the cost of treatment for the next unfortunate person who finds themselves requiring Brentuximab or funding more research into refractory Hodgkin’s lymphoma.
‘I Got The Good Cancer’ also has other goals.
We want to raise awareness and do something about the appalling situation in Australia regarding lack of access to potentially life saving drugs; the same drugs that are freely available in many other countries around the world.
We also want to recruit more blood donors as people with lymphoma and other blood cancers rely on blood and platelet transfusions during some stages of their treatment.
Finally, we want to encourage more people to join the Australian Bone Marrow Donor Registry (ABMDR), in the hope of finding Melissa and other people a donor. This is something that is so simple and could save a life.
I thank you from the bottom of my heart for reading Melissa’s story and for any help you may be able to offer.
Jenni
