Because we needed something else to do….

We’re up to week 4 of radiation now, the time has gone surprisingly fast. Only one more ‘full’ treatment and then on to the ‘spot welding’. This last week and a half though we have (amazingly) had something more pressing on our minds than the radiation therapy. The first Sunday in October Alex’s appetite started to fall off, initially we weren’t concerned as we had been told that this was a possible side effect of the treatment, but a few days later he started to cough and then run a temperature. The Friday before his birthday saw us headed back to hospital, after the usual wait in ED Alex had his port accessed and then had an x-ray of his chest. The result was a bit of a surprise – pneumonia in the lower lobe of his left lung. After all the tests and getting organised and the doctors deciding they wanted Alex to stay in overnight it was close to midnight, that combined with hourly obs by the nurses and Alex having coughing fits on a regular basis meant poor Phil got very little sleep that night! The good news came on Saturday with Dr Ram (Alex’s oncologist) giving the OK for Alex and Phil to come home, which meant that Alex wouldn’t be in hospital for his birthday on Sunday!

There was a real question mark hanging over us on the following Monday, as we weren’t at all sure that Alex would be able to be anaesthetised. When anyone has an anaesthetic their breathing rate and oxygen saturation drops, and for this reason people who are under anaesthetic are monitored very carefully. Normal oxygen saturation, commonly referred to as “sats”, is between 95 and 100 percent, and Alex’s sats were fluctuating around 93 – 95 percent. Fortunately our anaesthetist that day was Todd, who is the head of paediatric anaesthesia at WCH, he had a look at Alex’s x-ray and decided to go ahead. This was a relief on one hand and a cause for more worry on the other, more worry as the anaesthesia carried a higher risk that day, and a relief because he could still undergo treatment that day. Brain and spine radiation is a delicate business, other types of cancers can have a pause in treatment of up to, in some cases, 5 days without it impacting on the efficacy of the radiation, but with brain and spine, while a 2 day break is needed after 5 days of treatment, any more than that can significantly reduce the efficacy of treatment, and we are not so fond of this treatment that we want to have to do it again!

We have got the week’s treatment done, but it’s not been an easy week, the antibiotics took 5 days or so to start making him feel better, but unfortunately took only 2 days to give him diarrhoea. Despite the panadol and the antibiotics Alex has felt pretty second rate, a feeling no doubt exacerbated by the daily anaesthesia. He has slowly but steadily improved, however, and we are keeping our eyes firmly fixed on tomorrow rather than yesterday.
This coming Monday is the last of the full brain and spine radiation, the next two weeks will be targeted specifically on the tumor sites – two in his brain and one on his spine. So far (touch wood) Alex hasn’t shown any signs of the sunburn commonly seen in radiation, and now since there are only going to be specific spots being irradiated, if he does suffer any it will hopefully only be in small patches.

19 down 11 to go!

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