Category: Jude’s Blog

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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.
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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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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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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.

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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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Park Life & Music

Today we had a big adventure off campus to the local park.

It’s scary enough taking Levi from the isolation apartment to the hospital, let along taking him out into the world.  Levi is allowed to go out in public though we have to be very cautious and selective about when and where we go.  Open air excursions are the best option provided that there are not any other people around, especially other children.  The post BMT rules are very similar to the CGD rules, only more strict, as Levi’s immune system is quiet immature and unable to fight viral, bacterial and fungal infections.  So it is a “no” to barked parks/gardens, decaying leaf litter, exposure to soil, construction sites and stagnant water. Just to list a few of the main offenders.

As it was a lovely sunny Sunday morning, we thought an early start to the local park would be a wonderful choice as Levi’s first excursion.

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Levi had lovely time running around and exploring the park, keeping Oma on her toes & getting Mummy to dry the slide by going down first!!

We got the park to ourselves for about half an hour before some other kids came to play and that was our cue to go.  Levi was disappointed though quiet tired, so didn’t fight going home too much.  Especially since he was going home to Daddy Fun-land…

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The afternoon was finished off with a music session.  Jude loved his new bongo’s, that kid has an amazing sense of rhythm!!

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Freedom?!

There is a lot of extra work that goes into caring for a child with a chronic illness, though add post BMT care on top of that and your day gets full rather quickly.  It’s been 24 hours since we were discharged and we are already more exhausted than usual.

We love being back together as a family, though being a nurse was not the career path I chose and is something that is taking it’s toll.  Even nurses only work 12 hours a day, with extra days off for night shift.  Levi’s medication schedule run’s from 6am to midnight, the overnight feeds run from 7pm to 7am and that is assuming that there are no extra surprises thrown in for good measure.  In short he is needing something down his NG every 2 hours at a minimum.

Last night, on top of the regular checks a mum does on her sleeping kids throughout the night there were some rather fun discoveries.  As Levi is getting 65% of his daily food intake via the NG overnight, it means that he needs a minimum of 2 nappy changes after midnight to ensure that there are no accidents.  When I woke to check him at 2:30am it was to a bed full of formula!!  Somewhere between midnight and 2:30am Levi’s NG had disconnected from the feeding pump and the formula had been pumping straight into his bed.  From the amount of liquid in the bed I can only deduct that it had been disconnected for at least 2 hours!! Poor Levi was soaked from head to toe and was extremely sticky, oh and the formula stinks.  So an hour later after a sheet, PJ, nappy change and a quick feed, (Jude not wanting to miss out on the action and needing a night snack), we were all back to sleep.

The next morning we had a trip up to C2 North (the day stay ward) for our ‘quick’ blood test, and surprising to Levi and myself it was extremely quick and we were back to the apartment within the hour.  Shocked that we had the rest of the day off together meant that we cold catch up on some sleep as we were all still quiet tired from the nights events.

All the boys were having some quiet time and watching a movie in bed when “crouching tiger, hidden Jude” struck… he decided that Levi’s NG looked way too appealing and yanked it out in his ninja like fashion!!  We were able to save it from coming all they way out, though Jude has a really good grip and it took some muscle to get it back.  “Quiet time” turned into a distressed Levi extremely wary of his little bother and resulted into another trip to the hospital for re-taping of the NG in place and making sure it was still where it should be, in his stomach and not his lungs.

So a “day off” from the hospital still saw us having 2 trips to the ward, just incase we were missing the fun of C2 North, and Levi regularly telling Jude off for touching his “nose noodle”.

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Breaking the news barrier….

Monday greeted us like a bit of a sledge hammer on the news front. Levi initially didn’t want to have anything to do with a new week of getting poked and probed let alone more news relating to his BMT, so he seemed to wrap himself up a little tighter in the towel of denial.
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IMG_3062Taking all of the news to date, we then got a further piece of news as we were also told that today was to be our discharge day, so no more nurses on standby with any detection of infection, temperatures etc it would result in a swift visit to emergency. It also means that we now start our regular, Monday, Wednesday and Friday visits to day stay at the hospital as out-patients. With discharge seemingly imminent we began the many trips down to the apartment to empty our isolation room. However, for anyone that has ever experienced a hospital discharge they will understand, having been informed of discharge at 9am, we finally left the ward at 4pm. With mum and dad extremely hungry, having no lunch, Levi attempted to ensure our blood pressure and heart rates remained monitored by performing regular observations on us. Could be a new career for the little guy.

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With everything that happened, we are so thankful to the medical personal that have worked so hard to get the boys to where they are, the research that has gone in to making this possible, and the difference that this transplant will make to Levi in the future, and Jude when he has to follow in his brothers footsteps. With the knowledge that we still have a long road ahead of us for Levi before we can be sure that this transplant will hold and he will be forever free of the symptoms of CGD and that of Jude’s transplant, I am not sure if my finger nails will cope and am sure that with everyday that passes, I am getting more “distinguished” with grey hair. But as we settled in for the night, I am sure both boys dream of playing in the leaves and enjoy growing their own vegetables in the garden; well maybe that is what I like to think. Maybe Levi was dreaming of ambulances, Ant & Belle and Jude was simply dreaming of milk.

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