Blog Jude's Blog

Life passing you by

Looking back over the past week, it seems like such a blur. Only a week ago, Jude was an inpatient at Sydney Childrens Hospital as the team fought to get his osteomyelitis under control in preparation for his Bone Marrow Transplant. So when we were given the all clear to head home to get our affairs in order for a week, we took the bull by the horns and in similar fashion to a Road Runner cartoon, “beep beep”. So with a week to get the house in order, and sort out all of our affairs at home, we found ourselves sitting at the table at the end of very long days and not sure what to do with ourselves. So as the weekend came quickly around, it was all hands on deck as we madly packed up our lives for the upcoming 3 months plus that we knew we would be spending in Sydney. Packing ones life up to go on holidays is very different to packing up a life to go to hospital. It is a case of not knowing what you are going to need and when it comes to spending your days in hospital, what may seem trivial, is actually a matter of comfort and sanity to break up the often depressing and non-rewarding existence that is hospital living. So as we worked out what to pack, and more importantly how to pack. The packing ritual was often broken up as we hugged our beautiful girls as we knew it would be some time before we can a chance to see them again.

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Car packed, house put in order we pulled out of the driveway for the now to familiar road to Sydney. Moving into our room at Ronald McDonald house is always fun as we played Tetris with our belongings. Yet somehow we managed to pull it off yet again as the lights went out for another long difficult day, however our thoughts were not far from the impending conversation that we knew we were going to have the following day. So as the sun seeped through the crack in the curtains on the Monday at 5am, Jude was wide awake and therefore, so was everyone else in the room. Today was the dreaded transplant conversation that every parent never wants to have. This is the nasty conversation where you hear the truths of the process and find out that it is, unfortunately not a simple process where somehow, somewhere, a donors tissue is magically transported into the recipients body. This is where you hear the statistics, the failures, the risks, the consequences. This is where you wonder if, as a parent, are you truly doing what is right. You second guess the decisions you have made to date, and the decisions you will have to make in the future. For both of us, the outcome this discussion was no different. As we left the meeting, we both felt emotionally and physically drained and true to form, words were not readily available to truly articulate the thoughts, positive or negative that were now freely flowing through our minds.
In the interest of ensuring that we are always busy doing something for the boys, immediately after our meeting, we were ushered into clinic for Jude to have some blood workups completed. Fortunately this was only going to be an hour visit. Unfortunately, Canberra Hospitals reputation once again preceeded them as the nursing staff realised that in previous weeks central line care (the line that they use to access all of Jude’s bloods from and need to be able to administer his chemotherapy drugs amongst many others) was not flushed and as a result, had blocked. So our hour trip, almost resulted in a cancellation of Jude’s Bone Marrow Transplant as the staff began working through their procedures to unblock a line. This of course came with many other risks and complications that we may not be aware of for some time, as a block line, could hold a variety of infection, that may or may not become apparent during his chemotherapy. Once again, we began to question our decision to proceed with his treatment as we left the ward some 5 hours later.
Knowing that in only two days, Jude was to be admitted for the start of his long journey, we began battening down the emotional hatches as we prepared ourselves emotionally for the next leg of our little mans journey through life. Knowing that the next two days would be the last opportunity to breath the outside air for some time, we made the most of it by spending every waking moment with the boys, however adding to the complexity, Jude’s isolation, and by default Levi’s had already begun.

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3 replies on “Life passing you by”

Good to see that Canberra hospital is still leading the way in outstanding patient care 🙁
Sending lots of hugs and thinking of you all during the next stage xxxx

Thinking of you all as you embark on this journey for the second tie around.
Nathan, any joy with your HR issues at work?

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