December 2003 we went to New South Wales, Australia for a small holiday over the Christmas period with Chris’ family. We were going to enjoy Christmas then go camping with Chris's parents
On Christmas night, Chris was feeling most uncomfortable with symptoms of constipation which had built up over a couple of days.
We visited an after hours clinic that evening and were sent home with some treatment. The treatment was not successful, so we returned to the same clinic the following morning, seeing another Doctor. This time Chris was given different treatment and told if it hadn’t improved we must re-attend the clinic again that evening. On our third visit to the same clinic (another Doctor again), the Doctor ordered an X-Ray to be performed. The X-Ray showed an "overloaded bowel" and the slightest shadow which needed to be followed up.
Unfortunately when dealing with public hospitals in a different state and on Christmas public holidays it becomes much more complex. Chris needed to have an urgent CT scan performed but no-one was willing to do it. We felt like an angry cat chasing it's tail.
Chris eventually had the scan done on the 28th December 2003 after a lot of "persistence" on Christine’s behalf.
The CT scan had revealed a “huge” mass in the pelvic area. At first the doctors thought it was Lymphoma. We spoke to the surgeon on call and also had a chat with a Haematologist.
Needless to say that our camping trip was cancelled as it was decided that we should travel home as quickly as possible to our own Doctors for follow up. The doctors in New South Wales had already contacted our local Dr to arrange an urgent appointment on our return home to get things underway.
Christine's parents and other members of the family in Toowoomba had been notified of our sudden return home. We didn't want to see anyone except Christine's parents until we knew more and had time to deal with such news ourselves. No one outside either of the families knew anything at this stage.
It was already a long journey home, being a 12 hour drive (non-stop except for fuel) by car without having to deal with this sort of news. Little did we know that all this was just the beginning of many more investigations to come.
We travelled home on New Years Day 2004. Indeed a New Year had begun – but for us it was going to prove to be a very “tough” year with many challenges ahead.
Chris was admitted to hospital on January 12th January 2004. A Laparotomy was performed and tissue samples sent to Pathology for diagnosis. Soon after Chris had returned to the ward the nurse came to take Christine away as the surgeon wanted to speak with Christine. The Surgeon mentioned that the tumor was very large, very hard and he had absolutely no idea what it was. He was certain that it was NOT lymphoma as first thought.
Chris's parents travelled from New South Wales to be with us for a few days whilst we tried to get our heads around everything.
The final diagnosis
was given to us by the surgeon at the follow up appointment, on 19th
January 2004. Intra-Abdominal Desmoplastic Small Round Cell Tumor
(DSRCT). It seemed to be the longest week in our lives waiting for
the news. The surgeon admitted he had never heard of such disease
looked very “glum”. After a couple of visits with the surgeon
and also a local oncologist, we were given three possible options.
It seemed to us that the doctors we were dealing with had never heard of this particular disease before given it was so rare. Therefore, it did not give us any confidence for what we had to face in the upcoming months.
As Christine worked in the medical field, she went to desperate lengths to try to find someone (anyone) who had experience with DSRCT. Around all corners seemed to be an even bigger wall that we were "bashing our heads against" so to speak.
Finally we were put in contact with the Director of Cancer Services at one of the biggest hospitals in Queensland. Also where the current leading Australian cancer research institute is situated. During the initial phone call we were warned at making any "rash" decisions before we had sought several opinions.
From this point on it was like a "whirlwind". Everything was happening so fast. Yet emotionally we were standing still. Within two days we were in Brisbane (125km from our home) having more meetings with Doctors. It appeared that we'd finally found someone who instilled more confidence in us to go ahead with the treatment.