Every parent's nightmare

The blog has been silent for a while. Our family is reeling from the most horrific news. Our youngest daughter Mae has has been diagnosed with cancer, and the prognosis is grim. So many friends and family are expressing their loving concern by asking for news that I am returning to the small comfort of my blog to express myself and to pass on what is happening in this ghastly battle for the life of my little one. For she is still my little one although she is the bravest, most stoic, most rational and mature 28 year old you could ever meet. Words can't capture how painful it is to watch helplessly, to imagine what she must be going through, to be unable to make it go away, to be unable to take her place.

Mae has been unwell for such a short time, but the progress of this thing is rapid. Mae was having heavy painful periods, nothing unusual for her, but during my trip to visit her and Nick in March at their home in Canberra, she had a pelvic ultrasound that showed nothing of concern, except an "ovarian cyst". htttp://rovrallover.blogspot.com.au/2012/03/visit-to-canberra.html But after that there were gastric symptoms as well, more pelvic pain and so a lot of investigations were done for tummy bugs, giardia and so on, with nothing showing up. Eventually another pelvic ultrasound was ordered. This showed her ovaries had doubled in size and an emergency gynaecological consultation was arranged. I dropped everything and went back to Canberra. Then the nightmare began. Tumour markers showed positive. More tests were ordered and a gynaecological cancer specialist was brought in. She sent Mae to Royal Women's Hospital in Randwick. Have your birthday tomorrow at home in your own bed, she told Mae. Then go to Sydney and book in the following day. It was most likely a germ cell ovarian cancer, she told us. Usually curable. But just a few more tests once you are in hospital.  Just to be sure what we are looking at. 


So Mae had her birthday at home with Nick, surrounded by flowers and cards from worried people who love her. We cut up her little cake and shared it. And I took a photo, same as I try to do on every birthday that I am able to be there for all of our children. 

Mae was still managing to smile despite the terrible news, and was managing her symptoms well with only panadol, plus Mr Bucket. Nick is a remarkable young man, says and does all the right things for her.  Of course the fluffies are a big comfort.  This is Evie (with Mae) and Pippin (with me) who are both snuggly cuddle-me bunnies. Except when carrot is in the offing, then they become crazy dash-about and clamber over each other bunnies.

July 8 Mae went into hospital, and tests revealed the true source of the problem. A nasty primary cancer in her colon, it had spread to the ovaries, but apparently nowhere else. So far. So the treatment planning began. The colorectal cancer team at Prince of Wales Hospital was brought in, and my brother Derek recommended also seeking advice from a surgeon at his hospital, the St George. Professor David Morris is heading a team at St George to offer a new, more aggressive form of treatment for peritoneal cancers, claiming a higher survival rate. Professional debate raged about how best to help her, a desperately confusing and distressing time for all of us. Eventually an independent cancer specialist with experience with both approaches was asked for an opinion on either treatment option, and he recommended the St George team. Meanwhile, Mae's symptoms worsened. The tumour never sleeps. It doesn't have the weekend off, or wait for test results or professional opinions.  We just want to get started on treatment. A path forward emerged. Mae would return to Canberra and commence chemotherapy, then there would be surgery in some weeks' time. The surgery will take her ovaries, uterus and part of her bowel. Her peritoneal lining will be scraped and bathed in chemotherapy. There will be 5 days in intensive care, then weeks in hospital. If she can survive the treatment, she may have years of life. That is the gamble.

Nick made an animal for every day Mae was in hospital. By the end there were 13 of them. She was discharged at 7pm on Friday night and she and Nick drove back to Canberra, to her own bed, to her animals. Her personal good luck charm, a rabbit was spotted in the hospital grounds and I managed to get close enough for a photo.

Mae still hasn't had any treatment, but we are hoping (and dreading) chemotherapy will start next week. At least then the nausea and pain will have an alternative reason for happening. Will that be some comfort? She is weak, shocked, scared and blackly sad but there are flashes of fight in her. David and I are in Canberra now, staying with them.  Trying to support Nick as well. We will have to leave on Tuesday as David is due in Sydney for hand surgery, hoping that a carpal tunnel release will ease his arm pain.  But we will be back, at least I will. I have cancelled next weeks' appointments at work and may resign altogether.

Please come and see Mae and help distract her and help normalise her days, and share a laugh but don't tell her you know how she feels and don't tell her you know she will get better. Nobody knows. All we have is hope.