Saturday, October 10, 2009

A little more of the back story.

The whole idea of these crazy endeavours I undertake is to raise money for Working Wonders. They do amazing work for kids raising money for research and new equipment as well as providing support services to patients and thier families. My families connection with the Royal Childrens Hospital Intensive Care Unit and the Childrens Oncology is very personal and based on great admiration and appreciation. I have spoken breifly about my son Jack's battles as a baby but I think now is the time to share a little more of the personal experience through the eyes of his mother, Alison.
We kept a day book of the time Jack was in hospital. There were 2 reasons behind it. The first was to be able to keep tabs on what was going on with his treatment as often one of us had to work or just go home for some rest and this allowed the other person to explain any updates or visits from specialists etcetera. The second was to keep a record for Jack as he grew up. The possibility of Jack needing ongoing and very invasive treatment was very real and the more we learnt of the side effects and the long term effects of these treatments the more concerned we grew with how we might explain to him later in his life. Alison and I did not want him to ask questions about why we had made decisions for him at the time and not be able to say precisely why we had made them. I reckon that by the time Jack left ICU Alison and I had done most of a degree in childrens intensive care practice and knew more about neuroblastoma than most oncologists! Must have driven the staff nuts with our questions.....
This little piece of literature comes from Tueday 29th April, 2003. I have just directly transferred it from the book. No corrections, no punctuation. This is exactly as my wife wrote it.
Go in for CT scan at 9:00am- Need general anasthetic for this procedure.
Come out of anasthetic and they decide your ready to move to SURF ward. (out of ICU)
12:00pm move upstairs . Have own room with nice view. Graham and I are very excited. Jack still needs lots of cuddles and is getting very distressed when ever he is put down on the bed. I calm him and put him on the bed to change his nappy and he stops breathing!! for about 45 secs. (A LONG TIME!) Whole body turns blue. Nurse gets him breathing again and we call ICU to come down and have another look at him.
Jack fasted for scan and we are having trouble getting him back on feeds as nonone knows who to ask to start them again. Mum and Dad think part of Jacks distress is that he is very hungry.
Dr Delbridge arrives - comments on oxygen being very highand breathinh halting being of concern and Jack is readmitted to ICU at 5:00pm. We are told this is the record for return to ICU. 4 hrs!
Jack is still in distress. Stops breathing twice more. Decide to intubate. Jack put onto Midazolam and Morphine and tube inserted down nose to help Jack breathe. Now he has time to relax and get better under sedation.
Second most intense day since Jack was first admitted.
High point of the day was a visit from Oncology team. CAT scan came back clear - no lumps anywhere else in his body. Still more tests to do but atr this stage they think they'll be OK to leave the tumour with no treatment and just watch it. YEAH!


  1. After the year we have had with Emma, ( I think the medical staff in York hill childrens ICU hated us too as we wanted to know every detail of of Emma's treatment)I can really relate to this. When people say you are "amazing" for coping so well with what you went through as I'm sure they have. Except the compliment because you are amazing especially little (well not so little anymore)Jack. Well done guys.

  2. Thanks mate, I know you know what I am talking about. Wish you were here as we could do with the support crew. By the way, Jack recieved clearance from the tumor a couple of months back. It kind of flew under the radar at the time as other things seemed more important. Funny how you get comfortable with the thought of your child having a tumor....