Blog Jude's Blog

One of these things just doesn’t belong here….

Mum and Dad are always telling me that I shouldn’t put things in my mouth and up my nose, though I don’t think the nurses know the rules. As today the nurses put a tube up my nose and stuck it to my face. If that wasn’t bad enough, it took 8 attempts to get this new accessory!!

Lucky I’m a very forgiving person.

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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.