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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.

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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.

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Jude starts chemo

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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.

Jude’s Admitted to Hospital

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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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The elephant in the room

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A special visit

On a quiet rainy Saturday morning in Randwick there was a buzz of excitement in the air, as there was a very special visitor coming for morning tea.  Ronald McDonald house was sparkling, morning tea was baking and their was a security team doing a sweep of the house and surrounding area.  As this was the first time a visitor to the house had brought such a entourage, we wondered if it was just the guest we were told about, or if some royals might be popping past as well?!  Yes, I am guilty of starting that rumor, though also knew at the back of my mind that it was unlikely as Wills & Kate were finishing up their tour of NZ, though it was fun to speculate.

Royals aside, Jude and I were lucky enough to attend a very special morning tea with the Governor General and his wife.

The GG had a tour of the house and gave a lovely speech, once the “official” part of his visit was over he and his wife were able to relax and have some morning tea with the families staying at the house.  Neither Lady Cosgrove or the GG could resist Jude’s charms and both rushed to be the first to greet him, with Lady Cosgrove winning some cuddles with Jude, while the GG was sent to another table.

It was a lovely morning and equally as nice to meet Sir Peter Cosgrove and his wife, Lady Cosgrove.
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* Photo’s are courtesy of the Governor General’s office, www.gg.gov.au

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George Gregan Park Time

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C is for CGD

This is not one of my normal blogs, normally we provide amazing updates on the progress of our boys through this long process, this blog is more about a recent experience that left me speechless and started making us think that some people that we meet along our journey really have no idea what it means to have children with a primary immune deficiency.

It all started last week, I had ventured out the relative safety and security of our isolation apartment to grab some filtered water for Levi as he is not able to drink normal tap water until his immunity is 100% operational. Now it’s important to note that Ronald McDonald House is a respite for many families in need with a variety of varied problems, some are terminal and others are not, regardless though, we are all there with a problem of some sort. In the process of filling water, it is common for people to start conversations with you, mostly its idle chatter, though sometimes the conversation gets a little on the heavy side with discussing why we are there and how long we have been there etc. On this occasion, the conversation had turned to the heavy side with the person starting to tell me their life story before asking why I was here. I summarised our situation by simply saying that our little boy was admitted at the beginning of January to have a bone marrow transplant to attempt to cure his genetic disease called Chronic Granulomatous Disease and that we would be doing it again with our second born sometime in the near future. I didn’t expect to be on the receiving end of what happened next….

They looked me in the eye and said “well you must be one of the lucky ones to have a chance at a cure, my kid has leukemia and we have just started chemo for a bone marrow transplant”. For anyone that knows me, you will know that I am hardly even speechless but I was, I had nothing. I simply finished filling my bottles of water and walked back to the safety and sanity of the isolation apartment. That evening it got me thinking, why do some people think that cancer is the trump card of all diseases.

What this person failed to understand about our situation is that where some cancers can lay dormant for years or even a lifetime, most people that have CGD will not make it past their teenage years if left undiagnosed and without prophylactic medication. If I went down to the horse races and placed a $100 on two different horses, one with CGD and one with cancer, I would walk away with $20,000,000 if the CGD horse won, but only walk away with $2,500 if the cancer horse won, those odds are only good if you want to become an instant millionaire, not be diagnosed with a potentially fatal genetic disease.  It doesn’t make me feel lucky. There are very few organisations established to support people with genetic diseases, however there are more than 100 established to support people with cancer. It doesn’t make me feel lucky. Post bone marrow transplant, the boys will be in a higher category of having a cancer later in life than what a normal child would be. It  doesn’t make me feel lucky. Levi won’t have an immune system for the next year and there is a chance that his body will reject the bone marrow transplant resulting in his CGD returning and having to start this process all over again. It doesn’t make me feel very lucky.

It wouldn’t have bothered me if it was an isolated incident as I would have chalked it to ignorance and left it at that, but when I was staying on the oncology ward for his bone marrow transplant it actually happened twice before, with people telling me that it would be far easier to only worry about a genetic disease than cancer, though this was the first time someone told me that I was lucky. Rather than chalk it to ignorance, I am going to give the benefit of the doubt and say that it is more likely to be a misunderstanding in that what people don’t realise is that the majority of cancers are actually caused by a defect in the bodies genetic structure. Yes some are considered to be hereditary, but even then, you could say that is genetic as well. The treatment for CGD is not dissimilar to that of a leukemia patient, with the exception that Levi did not require total body irradiation (TBI) prior to the transplant, he had a partial body irradiation. However he is required to stay on some of the harder medications for a lot longer to minimise the chance of graft versus host disease (which is as it sounds, the host graft fighting with the donor graft as it is invading the hosts body) which is encouraged in leukemia patients but can be detrimental to CGD patients. These medications place a burden on vital organs and cause a swagger of other issues as we progress along his path of recovery. In addition, a patient that is receiving a Bone Marrow Transplant that is not considered an oncology patient does not have the same access to pain medication that would normally be available to an oncology patient which requires the doctors to jump through more hoops to make the process bearable for the patient.

Unlike a cancer patient, Levi won’t have the luxury of playing in a backyard for some time or have normal interactions with other children with the exception to his little brother due to the risk of infection, that could easily compromise his graft and result in a rejection. I am sure if Levi understood luck, he wouldn’t feel very lucky right now.

It shouldn’t be a case of “my dog is bigger than your dog”, or “my cancer is more news worthy than your genetic disease”. As one of our doctors told us at the start of this whole process, “people may try to talk up their situations, but rest assured, everyone here is in just as much of a crap situation as the next, it is all relative”. I wish that we were out of the woods, but it is a long road to recovery and ensuring that the boys can have a normal life, with the exception of the monthly visits to Sydney Children’s Hospital for the rest of their lives. It is imperative for the message to go out that children with genetic diseases, that include having a primary immune deficiency, are just as hard off as a child with cancer. They don’t want it, nor should they have to have it. It is not fair, but one thing I have learnt through this process is that you have to roll with the punches and play the hand that you have been given.

With all of this aside, there are something’s that we feel lucky about, our amazing donor that gave his bone marrow expecting nothing in return, our wonderful families and friends that have given us love, comfort and warmth through this process, and mostly, the love that our little family unit has for each other for every minute that we have together.

https://give.everydayhero.com/au/vijufoo

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The girls come to town

Over the last week Levi has been pining for his fur sisters. So after careful consideration (not really that much though) we decided to relocate the girls to Sydney, so that they could be closer to us.  As they are both registered pet therapy, Delta Dogs, we had the luxury of them actually allowed onto the Ronald McDonald House property and able to come into the apartment for the day.

Levi had begun asking about the girls on a daily basis and walking around the house with his two stuffed puppies under each arm. We had often caught him patting each one and having a long conversation with his stuffed version of Tee-Tee & Belle-Belle, so we thought it was time for the girls to make the journey.
imageNathan pulled the short straw on the 12 hour return trip to Canberra and headed straight home after clinic and returning the following morning with the most wonderful gift for Levi. As Levi stood at the front door, his facial expression was one of “is this really happening?” as Belle and Ant thundered into the apartment. Levi had a new lease of life and was beside himself that his sisters had made the special journey to see him. He spent the morning running around after the girls and continually hugging them at every opportunity. Jude was also in a state of joy as he made a grab for Belle as she ran past.

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As the morning wore on, Levi was in desperate need for a nap and the only way this was going to happen was if his two stuffed puppies were to be replaced by the real thing. Once he was fast asleep, the girls snuck out and had some quality time with mum and dad as we knocked back a nice cup of tea.

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Unfortunately the Ronald McDonald House reception for furry family members or Pet Therapy dogs does not extend to overnight stays so as the evening wore on, Levi bid his farewells to the girls and Nathan took them over to St Ives. The departure was slightly delayed due to Jude acting a little funny and deciding to vomit without a break, however it eventually subsided and we didn’t need to take a trip to ED. A special thanks to Robert, Glenn, Zane & Luke for opening your house and hearts to our girls and for the amazing updates (video and pictures) of the girls in their holiday habitat and with their new boyfriends.