Blog Jude's Blog

The upside of Chemo

What a difference 24 hours makes!!

It would appear that we have turned a corner… from our sad unhappy little man of the past few days, we have silly, crazy, happy Jude back!! I can’t tell you how much we have missed him!! Our little showman is back to entertaining all who enter the room and is very much back to being like the puppy in the pet shop window, desperate to win you over with his antics.


Though with a better mood it doesn’t mean we have been drama free, with Jude’s central line deciding to give us a scare. Both of Jude’s lumen’s decided to get harder to draw back on, which meant that when they were trying to take his daily bloods for testing, his blood wasn’t flowing as freely as it should. The white lumen had a visible clot that could be seen in the line and his red lumen had his blood clotting as it was coming out of the line. This can be common, so we were told. The first step was to run some anti-clotting agents down the line called heparin. Unfortunately they didn’t do the trick, so we had to call for something a little harder hitting and a little riskier called urokinase. The positive about having urokinase in the lines was that Jude had to be unplugged from his machines so that the anti coagulant could just sit in the lines and do their thing. So Jude was unplugged and free to roam his room for 3 hours!! He made sure he took full advantage of the situation, and explored all those things that he had been looking at though unable to touch. The good news is that it worked and we now have a full functioning central line again.

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Levi's Blog

Chemo, round three, ding ding

Today was the last day of the “nastier” chemo on Jude’s treatment protocol and we were all anxiously waiting to have the day behind us. It started at midday as usual and the nurse and I were repeating the mantra “the next 3 hours are going to be uneventful”. Thankfully it seemed to work, as Jude slept through most of the treatment and his stats were all in the realm of normal. His oxygen levels did raise some slight concern, though all in all it was a wonderful “boring” end to the Alemtuzumab.
At the moment poor little Jude looks like a miserable puffy frog, just sitting in his cot not very happy with the world right now. He is loving regular cuddles, though there are no dimples or laughter from our usually happy little man, just a sad little face.

Jude looking sad

Blog Jude's Blog

Chemo, round two, ding ding

As we entered our second day of Chemo Jude seemed a little more prepared for the task at hand. However, seeing the nurses bring in nearly every recovery apparatus before they start treatment is always a little unnerving for a parent. For any one that has a pharmaceutical background, the troublesome drug that they were worried about is called Alemtuzumab. With the knowledge that this drug is commonly used in the treatment of chronic lymphocytic leukemia it’s no wonder Jude was having a bit of a reaction to it. So with the hatches battened down, it was off for round two. An hour and 30 minutes into the 2 hour treatment he had another reaction, not as sever as the last, though enough for them to pause the treatment until they were happy he was stable enough to continue. His skin went mottled, blood pressure was high and lower oxygen saturation levels were a concern.  Since his first round of chemo Jude was holding an additional kilo of fluid!!  With the additional fluid onboard this also was making him work just that little bit harder, so they gave him some oxygen over the next 12 hours to help him along. Thankfully that was as exciting as it got.


After his treatment, it obviously took a lot out of him as he spent a large portion of the afternoon catching up on some much needed rest.This gave us a few moments to catch up on our thoughts and re-center ourselves after a very long, and stressful week. It also gave us a chance to take stock of what Jude was eating and realise the inevitable trend that follows every Chemo treatment. The loss of appetite is something that is manageable, and one has to get past the sheer wastage of food that follows as the taste buds begin to get destroyed and things that they know, no longer taste like they used to. I still remember, giving Levi some of his favourite foods during his transplant, and the sheer look of terror as he looked me in the eye and may have well accused me of feeding him steamed brussel sprouts.

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Meanwhile back at the apartment…. Levi managed to get a bath in and do the dinner dishes (naked chef style) before getting ready for bed, then it was up to the ward to give Mum & Jude a quick hug and a kiss good night before calling it a day.


Blog Jude's Blog

Chemo, round one, ding ding

The oxford dictionary defines admission as “The process or fact of entering or being allowed to enter a place or organisation”. This definition could not be truer to describe Jude’s admission to hospital on the 12th of November 2014. However, Jude did not really have a choice in this matter, as the alternative is not worth thinking about. We have never had any doubt that Jude is a very different child to Levi in every sense of the word. As Jude entered the world that was his room, there was no excitement to be seen on his face, the last seven week admission in the ward next door had wiped that excitement clean off the slate of any elation that he may have felt about being locked in a 4m square room for 3 months. The overall thought process was adequately described when the door closed behind him and he immediately pointed to be taken back out of the room. However, that was the last time he was going to be allowed to pass through that door until his engraftment is completed. Fortunately, prior to entering the room, we did give Jude some time in the playroom, where he got the opportunity to be bossed around by his brother.

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The realisation on Jude’s face as he become more apparent that this room was to be his home for what would feel like a life sentence for this little guy was heart breaking. You could almost see the will being sapped from him as he found his way around his new cot. This was a very different experience to what we had with Levi, and we instantly came to the conclusion, that there was not going to be any comparative analysis to what we had gone through nearly 11 months previously. Unfortunately, the doctors and nurses failed to get this memo as we began to get the annoying and distinct feeling that they thought we were experts in Bone Marrow Transplants, they could not be any further from the truth. The constant use of lengthy medical terminology and the often to common statement of “you have done this before so we won’t bother explaining it to you again” was, in short, beginning to piss us off. We put our personally feelings aside and focused on what was important and put the request in to reduce the mattress size to the correct height and minimise the risk of Jude suffering a head injury as well as the all to common moving into the room. The desire to run from the room was not limited to Jude, we continued to question ourselves and the decisions that we have made to go through with this, but, there was no running, we had raised our sails, harnessed the wind and chosen our tack to take. This was to be Jude’s journey, and we had to be his advocates to get him through.

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That positive energy was very short lived as Thursday came around. It started off so positively as we were moved into an isolation apartment with Levi so that he could have unimpeded access to his brother. Our team had advised us that if there was to be any possibility that we were going to keep the family together, Levi was not to have any contact with any other children, which was going to be a challenge if we stayed in the house with the other families. But then, as Jude was 2 hours and 15 minutes into his first 2 and a half hour run of Chemotherapy, disaster struck. Jude was sitting at the end of his cot, seemingly alert, however, “seemingly” can sometimes be a very loose term. He crawled down his cot, and within a matter of seconds, his skin mottled, his pulse shot to over 200 beats per minute, blood pressure fell through the floor and oxygen saturation began to drop. On top of all of this Jude’s temperature began to rise and his body began to convulse. This was not a normal response and no parent should have to witness their child going through this and our hearts were breaking as we stood there trying to comfort him. There was no hiding the pain and conviction in his eyes, the beautiful hazel eyes looked at both of us and you could see the question, “why”? It is just not fair.

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I don’t apologise if this upsets people, it is not my intention but I fear that it is a consequence of our story, it is not sunshine and lollypops, this is reality. Some people will understand and we love you for that, others will criticise us for sharing to much, and I pray that you will eventually understand our reasons. The truth of the matter is, this first day of chemotherapy has scared us both, and in truth, we do not know what to expect regardless of the fact that less than a year ago we were sitting here typing one of Levi’s first Blog entries. Regardless of how strong our boys are, nothing can prepare you for this, regardless of how much research you do and what people tell you. I have being asked on numerous occasions from people all over the world, what words of wisdom can we offer having gone through this before, the only words of wisdom for anyone is take life a day at a time, appreciating what is special to you and be the strongest advocate for those that do not have a strong enough voice to make themselves heard.
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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Blog Levi's Blog

Saturday nights in emergency… Again

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Blog Levi's Blog

Projectile to emergency

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