20th July 2008 Monday
We arrived at Peter Mac just before 5pm. We made our way up to the ward on the 9th floor and were given room 7 which had an awesome view of of the park next to us and a clear view of the MCG (no games currently on).
I was very shaken by the lack of confidence of the nurse that was going to be looking after us. He asked us questions from a survey, almost all of which were not applicable either because Jake is so young or because he's going straight back to RCH for so long immediately afterwards. His english was not good enough to realise this though, so Doug humoured him by giving him answers even to the stupidest questions. I guess my first impressions of him were proven as he turned out to not have very much experience with a Hickman at all so we had to watch him very carefully and explain what to do!
I also was not allowed to use the toilet next to us - in fact it turned out there were none on the entire floor for me so I had to go all the way down to the ground floor. (Interesting in the middle of the night in my PJ's!)
21st July 2009 Tuesday
We had to be down at the second level underground for radiation starting at 8 am. Doug came in early so that he could be here, so he carried Jake while I carried Morris (the teddy bear). Jake had to lie on a bed with perspex walls and we couldn't be in the room, but they had a small portable DVD player which they stuck to the frame around his head so he lay there quite happily watching his movie, completely oblivious to what was going on around him. We had a little trouble as he kept raising his knees but that was the only issue. They then turned him around so they could fire the radiation at his other side.
I found it hard as I could not imagine the effect the radiation was having on his body, and I could not be there to hold him during the treatment. All I could do was sit back and watch him on the closed-circuit TV screen. I guess the operators are not used to having crying parents in the control room because they asked me to move to the waiting room - I think they felt a bit uncomfortable.
While we waited, I had a chance to talk to the nurse coordinator about our experience last night (with the nurse doing the Hickman access) and she said she would investigate. I told her about the lack of a toilet and she asked around for a better solution - it turns out there was a toilet and shower on the 4th floor toilet that I could use, and I had it all to myself as that floor closes its main doors at 5pm.
Jake had a tough day because he had not been given any anti-emetics (medicine to combat nausea) before his treatment, so he could not keep anything down - not even his Nilstat (which is only 1ml). He did not eat or drink anything and was really tired so he slept for most of the day. While he slept I went exploring and found a library so I borrowed a couple of DVDs (for me) and a good pair of headphones. I will have to get my own - I've been using in-ear ones and proper over-the-ear ones are so much more comfortable :-)
In the afternoon we had to be there at 5pm so Doug arrived from work at 4:45 to come down with us. We had to wake Jake up to go. This time I had his own collection of DVDs so he lay back still. I find it amazing how he can watch the same movie over and over again. This time they put him on his side which Jake liked better.
Dinner was there when we got back to the room and he had fish and chips. He ate it all and drank some water.
22nd July 2009 Wednesday
Today was the same as yesterday except that Jake ate normally. He was really excited about having a small pool table in the games room next door, and we brought the Starlight Station back into our room (a large egg on wheels which contains a computer to play movies and games and a Nintendo GameCube).
We had another bad incident with a nurse. This time the nurse did not sterilize or use gloves when she broke the flow (disconnected a Hickman line), pushed the medicine through, then reconnected! I thought something was wrong with the procedure at the time, but it didn't click until afterwards that it was the sterilization that was missing and I became very unhappy and angry as this is a serious infection risk for Jake, and if he picks a bug up now then he will have a lot of trouble as the transplant preparation that has already started cannot be aborted at this late stage.
I rang Suzie (the nurse coordinator). I felt bad about rocking the boat but I left a message and she came to see me in person. After hearing the story she went and ordered all the nurses to download the regulations and re-read them. I hope she did not use my name, but at the same time I know that I need to stand up stronger and make my concerns heard without worrying about being polite.
23rd July 2009 Thursday
Today was not much different from the other days. Jake lay down and watched his DVD. We watch him on the tv. The radiologists do their job.
We had an ambulance transfer booked for 7pm but they did not show up until 11pm. The nursing staff felt really bad, and one of the nurses (that we've previously met in surgery recovery) offered to take us home with her as she lives opposite RCH. They also offered to pay for a taxi, but we called Oncology and they said it was a risk so we decided to wait for the ambulance rather than risk contact with the general public.
Jake fell asleep about an hour before they arrived so he slept most of the way on Doug's lap while they were both moved around on a stretcher.