Rory Gardiner's Webpage

03, Apr, 2009

Update for today

Rory was discharged from Starship and we are now residing at Ronald McDonald House. We tried to get the Doctors to let us go home for the weekend but they said it was a little too far (2.5 hours). They said Rory underwent major brain surgery and they are astonished at how quickly he has recovered, and how quickly he is progressing. They said he is in the 98th percentile! Must be dads fitness and mums determination! They said in the end the tumour was somewhere between golf ball and tennis ball size.
Rory had another session with Rachel the Physio and Rebecca the Occupational Therapist. These two lovely ladies are putting him through his paces trying to strengthen his left side, and improve his co-ordination. The girls have fitted him with a wheel chair as he still can't walk very far. He is still wearing the eye patch, and swapping sides every two hours. I think I have heard more pirate impersonations in the last two weeks than I have heard in all my childhood. It surprises me how many stares we receive out on the street. We have started to wander a little further afield; to Auckland Domain and the Museum for a walk, and into Newmarket. I must say the air isn't as clean as in Northland, and the masses of people take some getting used to.
We met with the specialists to determine his treatment regime. They are going to go ahead with surgery on Monday or Tuesday. The Neurosurgeon will remove as much of the second tumour as possible, without causing any deficit, to maximise the effects of radio and chemotherapy. The procedure is a shorter operation than the first, and carries less risk, although there are always risks associated with brain surgery.
The next step is to allow Rory to recover from the operation while completing planning and preparation for radio and chemotherapy over a 2 week period. This includes fitting him with a masks, a CT scan, harvesting his bone marrow, and putting in a semi-permanent port. We hope to have him home for a break for a few days before radio therapy starts. Radio therapy will last 6 weeks and then Rory will have 4 weeks 'break'. Chemo will follow. It will be given in four cycles of a week each, with 3 weeks 'off' in between. Both the radio and chemotherapy are going to be given in short intense cycles as the cancer Rory has is classed as high risk. From both treatments in the short term he is likely to feel tired, and nauseous. He will be vulnerable to infection and viruses, some hearing loss, and will lose his hair. There are several long-term side effects which shocked and upset Sean and I, but this is the cost of fighting for his life. At the end of the treatments, hopefully the end of 2009, there is a 65% chance he will survive 5 years. Those children which survive 5 years are largely in the all clear.
We continue to take it a day at a time.