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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

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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.

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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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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.
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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

A day, ‘helping people’

It is not every day that you get to do something that is truly amazing and makes it so difficult for Levi to stop smiling, last Saturday was no exception to that rule. It involved a return trip to Canberra, but the 7 hours of driving was more than worth it. The day started off like any other, Levi up at 5am and taking swan dives from his pillow landing unceremoniously on my stomach. Feeling a little tired, I pleaded with him to play quietly which, oddly enough, he obliged. So when I finally crawled out of bed at 6:30 for a 7am departure, I was feeling a little more human. It was through the magic hole in the wall for a few hash browns and a cup of coffee for me and the wheels were in motion for an amazing day.

The road was loaded with police and flashing lights, so Levi was in his element as he madly played spot the police car for the start of the long weekend. That aside we made good time and adhered to the speed limit and arrived in Canberra with time to spare. Levi still not knowing what was going on, apart for the brief discussion that I had with him on the way that we were going to look at a helicopter, was blissfully unaware. I am sure if he had an idea he would have been more willing to let Nathan L’s lego aeroplane go. So with much disgruntlement, I packaged Levi into the car and we made our way out to Hall to catch up with Nan and Pop who had grabbed the little guy some ear muffs that would fit and a special booster seat so he would be comfortable for the ride. They were also going to play an important roll in capturing the experience on video.

So after a long discussion, basically from Sydney at 7am, about how Levi wants to ride in the helicopter ‘to help people’ (because thats what helicopters do) we arrived at the hanger. Levi was quick to spot the helicopter and given the close proximity and lack of fences, he shot off like a rocket to check out the helicopter.

As Nathan L and Pete got the helicopter ready, doing all the pre-flight checks, we got some time to apply the all important sunscreen and I had to convince Levi that we were not going for a ride whilst he was staring intently at the helicopter. Finally, we managed to get close enough where Levi was able to jump in the back seat, and from that point there was no getting him out. As he bossed everyone around, he was quick to put his ear muffs on and started demanding that Pete and Nathan get in so we could take off and start helping people. I had to break his little heart and explain to him that helicopters are very expensive and it is not everyday that you get to get a flight in one, and then the rotors started to spin. It was from that point that his little mind was blown, he had finally worked out that this was real and he was going to go and help people.

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With a smile from ear to ear, the skids left the ground and we were off. Off to Goulburn for a quick run. With his face planted firmly on the window, he watched the cars and his face only left the window to give me the brief thumbs up, and point out some of the sights. Upon landing at Goulburn airport, his mind was even more blown away as we were greeted with planes taxing everywhere. With a brief wave and a good-bye to our ride, it was off to explore the airport, only stopping briefly for a sausage sandwich with some pilots who were putting on a barbecue.

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Before we knew it, the time for playing in the hangers was over and our little trooper was happy to run back to his helicopter to continue helping people. As he rounded us all up, and ushered us back to his transport of choice, we quickly embarked and it was off. Again, with his face pinned to the window and a smile from ear to ear, he didn’t let me down as he turned to me and gave me a huge thumbs up again. What made his trip more enjoyable on the way back to the hanger, was that he had worked out how to open the window, and to prove the point, he proceeded to ask me as we flew over Collector, if he could post his water bottle out the window. Needless to say, the intercom in the cockpit was filled with a firm “No” and the water bottle quickly disappeared into the bag.

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Upon returning back to the hanger, Levi was a little reluctant to disembark, but with a little coaxing, and the promise to check out a dead lizard and a dead brown snake, he was quick to show his true boy nature and hurriedly jumped from his seat into my waiting arms, but not before a quick photo shoot.

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A special thanks to Allen for letting us borrow his helicopter, Peter Montgomery and Nathan Le Nevez for arranging and flying us there and Nan & Pop for sorting out the booster seat and special ear muffs as well as getting some great footage of us coming and going. It was an amazing day with Levi still talking about how he helped people in the helicopter.

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Blog Jude's Blog

The elephant in the room

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Blog Levi's Blog

Chocolate regret

Ever wondered what the stages of regret are when you find your mum’s favorite chocolates…

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Blog Jude's Blog Levi's Blog

Regal Beagle

Spending so much time in hospital we have seen the benefit of so many therapists, play therapists, music therapists, physio therapists, psychological therapists, but nothing beats the qualifications that a four legged therapist can offer. When ever the girls come charging into the apartment after a long leave of absence, the mood of the boys changes dramatically. Today was no different, as Levi saw Ant and Belle come charging through the door the laughter and giggles rippled through the air. I may be just a little biased, but our girls have the most amazing power to brighten the days of everyone they see. As they come and go into our apartment at Ronald McDonald house the children coming and going to the hospital. After a quick family photo it was off for a walk as Belle was showing clear signs of barrel-ism as she had grown accustomed to sneaking into her sisters food bowl at feeding time.

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As Jude chowed down on his favorite food, a rice cracker, Levi couldn’t hold back his anticipation of making it to the park and was fast asleep within 5 minutes of leaving the apartment. It was fortunate that Levi was taking the time to nap as when we arrived at the park there was a couple of children with a very nasty bark so we loitered until it was all clear. Then Levi was set free to run amok on the slides, swings and climbing ropes.

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After a big day, our amazing furry therapist had to go home to their dog sitters for a much needed rest from Levi’s chasing them around the house.

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Levi's Blog

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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ViJuFoo goes Facebook

I am not sure if it’s human nature or if it is just me, but I always find that I want to do that little bit more regardless of what we have on our plate. The inspiration to take ViJuFoo to various mediums was no different as we have had a steady following from all around the globe. The thought of our boys growing up with a compromised primary immune deficiency made us start to think about what we could do for them as well as the greater community. We decided that we should try and grow a following of people, that are inspired by our story and are in a position to help. We have already had an overwhelming support from our friends and family both financial and emotional and we want to pay it forward by making a difference. So the first step was to create an educational image and post it to intstagram and follow it up with a couple of tweets.

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We didn’t want to stop there and have started to contact our local parliament representatives to see what we can do about arranging for more rubberised playgrounds in Canberra to replace the existing tanbark ones. This presents challenges in itself as we have no idea how to start this and so far have had no response from anyone that we have contacted. So it was to Facebook to gather more of a presence that extends past our circle of friends and we have had an amazing response to our page. This page will be used to share our lives with family, friends and others that are currently or just starting to go through what we have been going through so they know that they are not alone. We are encouraging people to share and like the page as much as possible.

In addition to all of this, we have kicked into overdrive with our fundraising with some exciting initiatives around the corner to raise much needed funds for Jeans for Genes Australia, just to keep us busy.