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A letter to 2015

Dear Mr 2015,

I would like to contact you directly to highlight some of our families key highlights, achievements and disappointments that you have presented us with over the past year. Needless to say if I saw you again, I would be inclined to kick you swiftly in the crouch, and whilst you were bending over experiencing some of the pain that you lined up for us, I would pat you gently on the back and remind you that everything happens for a reason.

A very rare evening on the lake, enjoying some remote control boat time.

In fairness, it wasn’t all your doing, and I somewhat hold a grudge against your close cousin Mr 2014. As we entered your tenure, there was a significant amount of baggage that came with us. However, I feel that you should have been better equiped if you had of conducted a proper handover of the unresolved issues that your predecessor, An all to common photo of Ronald and Jude, at Ronald McDonald House :)Mr 2014 was unable to deal with in the 365 days that he was provided. The year began with our youngest, Jude, dealing with the aftermath of a solid dose of chemotherapy and his bone marrow transplant from an amazing stranger. This was an amazing high. To witness first hand, how amazing a perfect stranger can be, provided you with the realisation, that the world really isn’t a shit place. With all of the wars, espionage, and unseen attacks, in the middle of that darkness, a ray of hope peaks through and provide us, our friends, and family with what it truely means to have a streak of humanity. This high was short lived with an unexpected infection picked up in Jude’s central line which resulted in a very quick extraction of the critical access port to his system. The repercussion of this loss has been felt by Jude on an ongoing basis with him resulting in a little human pin cushion with his weekly blood tests for the remainder of the year.

Things were not all sunshine and lollipops after that point. Unbeknown to us, you had dropped off the black dog for us to look after for an unannounced period of time. Interestingly enough, it is not all that uncommon for that horrible animal to be at the tail end of one transplant, but having two transplants, screw you and 2014! It was too much to handle.  Coming into this, a couple of people had mentioned to us that through out the process, you will make new friends, and you will lose some people that just are not equiped to handle the stress involved. Some will hold solid on beliefs regardless of the consequences, and others will shine through the darkest of patches. This is what happened to us in the first quarter of this year. As the black dog parked it’s arse firmly on the couch and demanded service, we both struggled to handle the dark times in front. Digging deep was just not enough, there were tears, there were fights, and needless to say, life was not easy. Yet, you just forged ahead with us in tow.

It wasn’t all negative though, it was a rough patch, yes, but the positive was that there were certain people, and yes they know who they are, that came from the darkness, illuminated, and just asked “are you ok”. Be it on a text message, phone call, or just in passing. The power of those three words were unknown to me before this year. I still would love to know what qualifications you actually have to call yourself a professional, given that with all of the highs and lows you throw at people over the course of your 365 day career, you do not have the decency to stop and reflect. Belle after her operation from a dog attack at the RSPCA Million Paws Walk.It takes the people around you to realise that part of humanity is to support and nurture those that are around you.

If we were not already feeling kicked in the guts, you decided to take off the gloves with Belle, our beautiful beagle. As she quietly stood at a stall at the Million Paws Walk, another dog decided to take a remarkably large chunk from her ear. The result was some surgery on her ear and several stitches to mend the damage. I am sure that you can declare that you did not play a major factor in this incident, however, regardless of us obtaining the owners details, they have not returned any subsequent calls regarding the incident, which I am sure you may have some influence over. These unexpected drama, did nothing for our mood, however, we were able to lean on each other to ensure that Belle made a full recovery, regardless of some nasty scar tissue.

Fortunately we were able to dig deep and escort the black dog from our house with a lot of cooing and coaxing, though he does occasionally come sniffing at the door. We forged on with regular fortnightly visits to Sydney as we entered into the dreaded flu season. Our flu vaccines on board it began apparent that the support for the season was going to be few and far between, regardless of how much we stressed the importance of the boys requirements. July came and went and we celebrated Jude’s 2nd birthday with a few special people in his life. We stopped to recount where we had come from, 2 years ago, on this day, 4 hours after Jude had entered this world, we received life changing news, A much needed babychino to get Jude through his clinic visit.Jude has Chronic Granulomous Disease, and he would not be able to Jude, on top of the world, well Australia at least.provide his brother with life changing marrow. Obviously this is irrelevant now, but needless to say, it does need to be mentioned. With puffy steroid cheeks, his new marrow on board, he seemed to have an amazing day.

Our life progressed, the day to day routine of protective isolation was again taking its toll. With almost a tag team style arrangement, we quite literally treated the house as a revolving door as one returned from work, the other would head to the pharmacy or shops for dinner. We occasionally received a leave pass to attend some fabulous weddings and enjoy a medical free existence, even if it was only for a few hours. We embraced an opportunity to make Levi’s birthday wish come true, to see the snow. For one week in August, we enjoyed the pure isolation that it was to be in the Snowy Mountains, with no mobile phone reception. Although nail biting, due to the nature of where Jude was in his transplant timeline, we enjoyed every minute, as did the boys as they tobogganed down the slops of a very isolated ski field. Levi enjoyed this immensely as the result was that he received two birthday cakes.

Life progressed for us over the next few months, with fantastic news that Levi was able to start going to school.  Although, this sounds straight forward, the hospital had to come and provide some intensive training to the teachers and support staff on dealing with children that are immunocompromised. With this training on board, it took some reminding Halloween happening around the house with a dose of BatJude.that Levi, although still in a risk category, was not in the same risk category as his younger brother with the potential of one bad cold, causing an engraftment rejection. Again, this decision wasn’t something that could be taken lightly, with many ensuing conversations between us, and the boys medical teams. Again, I would like to reiterate to you 2015, you didn’t go out of your way to make anything easy this year, and I feel like I have really had to work for every inch you have relinquished.

Nowhere is safe from the dinosaurs during Dinovember, hitching a ride to the coast to continue their shenanigans.

November made for some interesting times, as our home was overrun by some unexpected visitors. We also took the opportunity to make a journey to the Ronald McDonald Holiday house down at the coast for a much needed break. During the month though, on another regular clinic visit, our oncology team gave us some fantastic news. They had decided to hand Levi back to the immunology team. I am sure that your current expertise of just managing day to day operations over a 365 day period, you have no idea what that actually means, so let me break it down for you. With the hand over from oncology to immunology, it means that Levi is not under any management for his transplant and that the transplant team are extremely happy with his progress. The immunology team take back the reigns and will work with us to monitor Levi and his underlying CGD to ensure that the graft holds firm and that he continues to not show any of the symptoms of CGD for the remainder of his life. In addition, despite the “minor” hiccup of his immunoglobulins dropping through the floor and his body destroying his B cells, it looks like his body may be ready to receive immunisations again.

Looking back, I would like to stress that the although you found it within yourself to keep our family together over your 365 day tenure with a vast majority of negative influences in our lives, I would like to again highlight that I have no inclination to ever see you in charge of our lives again. I would formally like to request that you take this opportunity to graciously stand down from your position and make way for your upcoming replacement, 2016.

Jude's parting message to 2015.

On a final note, I believe that Jude has a message that he would like to pass onto you as a parting farewell.

Bon voyage 2015,

Nathan Fulton

A very concerned occupant of your tenure

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A story of genes

We all have genes that have the potential to impact our health. Some of us will live a long and healthy life, others will not be so lucky. The mystery of the human genome is yet to be unlocked. We breathe, we live, we love, and then we die. The construct of life seems so simple, but is it really? With our existence comes a minefield of elements that, unbeknown to us, as we live our normal existence, can throw our lives into complete turmoil.

Following Jude’s transplant, the process is for a daily visit to hospital for a series of blood tests and check-ups. The bond between these two brothers is so strong as they have never known anything else. February 2015. Credit: Nathan Fulton
Following Jude’s transplant, the process is for a daily visit to hospital for a series of blood tests and check-ups. The bond between these two brothers is so strong as they have never known anything else. February 2015. Credit: Nathan Fulton

So it was for my beautiful family. It also marked the start of my passion and drive to raise money for the Children’s Medical Research Institutes (CMRI) annual charity drive, Jeans for Genes day.

Just over two years ago, our lives were thrown into complete turmoil. We received the news that our eldest son, Levi, had a very rare genetic disease called Chronic Granulomatous Disease (CGD). CGD is a disease that stops the body’s autoimmune system’s ability to fight bacterial and fungal infections. What that means is that a simple cut has the potential to be fatal.

At the time of Levi’s diagnosis, we were expecting our second son who had a 50% chance of carrying the same genetic disease. Armed with this knowledge, our second son, Jude, was born at Sydney’s Royal Women’s Hospital in early July 2013. We harvested the cord blood in the event that it could be the life-saving cure we were praying for, for Levi. Within four hours of Jude entering our lives, we found out that he also carried the same mutated gene as his brother and the cord blood would not be the cure we’d hoped.

In January 2014, Levi underwent a round of chemotherapy to eradicate his bone marrow, and make space for an amazing gift donated by an amazing stranger from the other side of the world. This gift came in the form of a simple esky – one that carried bone marrow. The life changing bone marrow transplant was performed on Levi when he was two, an age where most of us were outside making friends, eating mud pies and picking flowers. Each of these simple childhood acts could have been fatal to our boys.

Levi received the transplant well, and despite a few speed bumps along the way, it has largely been deemed a successful transplant that has seen Levi grow into a healthier and active young boy.

The time leading up to Jude’s transplant was a bit more tumultuous. We tried our best to maintain Jude’s infection free record leading into the transplant, however we were not successful. He developed an infection in his bone marrow, called Osteomyelitis. This infection required a serious course of antibiotics and an airlift to Sydney Children’s Hospital, but we managed to beat the infection.

In November 2014, Jude followed in his big brother’s footsteps. Wiping the slate clean with another course of chemotherapy, Jude was ready for his donor’s bone marrow transplant, again from the other side of the world, but a completely different person.

One of the very irregular outings that the boys have. With some of the medication the boys are on, we have to limit the exposure to sunlight as it can cause the graft to reject. April 2015. Credit: Nathan Fulton
One of the very irregular outings that the boys have. With some of the medication the boys are on, we have to limit the exposure to sunlight as it can cause the graft to reject. April 2015. Credit: Nathan Fulton

Living with two very young children is difficult enough when they are able to socialise and go to childcare or school. But over two years of hospitalisation, left its mark on the family. The simple things in life are appreciated so much more. The impact of even a very small support network, one that understands the importance of flu vaccinations to immunocompromised children before and after chemotherapy, cannot be overstated. The risk of contracting a common cold and bringing it home to the boys, which could result in a rejection of their bone marrow graft, is all too real.

However, life goes on, and I endeavor to make the most of the time I have with the boys. As their grafts further embed into their little bodies, we continually get the green light to expand their opportunities to do different things, like going to the park or walking our dogs. It is a special moment to watch my boys experience normal childhood experiences for the first time.

One of the very irregular outings that the boys have. With some of the medication the boys are on, we have to limit the exposure to sunlight as it can cause the graft to reject. April 2015. Credit: Nathan Fulton
One of the very irregular outings that the boys have. With some of the medication the boys are on, we have to limit the exposure to sunlight as it can cause the graft to reject. April 2015. Credit: Nathan Fulton

Yet, despite these blessings, the possibilities to socialise the boys with other children of their age is still a long way away. This is a challenge that we will need to face as a family as the boys get older. With the gift of the transplant, the boys gain an immune system that can allow them to lead a normal life like other children. A day at the park will no longer mean that we need to usher them away when other children come along due to the fear of the common cold or more serious infection and they will eventually be able to play in the backyard. Statistically, most children that start in this world with CGD, will be extremely lucky to make it to their 15th birthday. Constant infections result in life threatening damage to major organs throughout the body and unfortunately they result in fatalities or the ongoing requirement for organ transplants which come with their own set of risks.

Without the research that is funded by charities such as Jeans for Genes, our boys would not have had been able to experience the world. Every year, I strive to raise at least $1,000 so that the research Jeans for Genes and similar organisations and charities facilitate can make a difference. Our goal is to ensure that no other child or parent experiences the pain, fear, and heartache that we have experienced over the last two years.

Through the important research of CMRI, and the money that we raise, we make a huge difference on a global scale, but also a personal one. The money that is raised will go directly towards helping more families like mine. Whether it be by paying for the crucial enzyme needed to test the blood of one patient for aggressive cancers or funding scientists to test a new drug that could treat cancer, epilepsy or other neurological conditions, every cent makes a difference.

Head to the Jeans for Genes page to donate money at http://www.jeansforgenes.org.au/fundraiser/nathan-fulton

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What one year means for a two year old

One year ago today, Levi lay in his bed as the amazing gift that was sent from the other side of the world by a complete stranger drained into his little body. This man had no idea what this gift would mean to this beautiful little two year old boy. But here we stand, 365 days or 8768 hours onwards (who’s counting) with Levi hanging onto this gift with all his might.

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To say that it was smooth sailing would be a complete lie. The road has been tough, rocky to say the least. We have all dug deep and have had some amazing support along the way. As we embark on the next leg of our families journey, it is worthwhile for us to take a moment to reflect on how amazing and tolerant Levi has been throughout his treatment.

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A birthday present to change a life

It is strange, no matter where you are in the world, some things never change, the sun will rise, the sun will set, we laugh, we cry and, we grow older. Today was no different, with yesterday being such a significant day, today was no different, today Jayde was to be another year older. Some have commented that they could think of nowhere worse to celebrate a birthday, a hospital, an isolation room, whilst your child goes through one of the worst moments in their life. But, take a moment to put it into perspective. You are with your child, they have received the greatest gift in their life, a gift that has the potential to change the complete course of their lives from that of living in a bubble to that of a relatively normal existence. I would counter that it would be a no brainer, a mother would always opt to be with what is most precious to them, and for Jayde it was no different. Even with a leave pass the night before, she turned down my offer, which was a relief as I had no idea when I would have a chance to bake her a Red Velvet cake with extra pink butter icing. I did feel particularly bad that I wouldn’t get the opportunity to sing her happy birthday in the morning, but a quick phone call to the night nurse team quickly fixed that up. Jayde was woken in the morning to a team of nurses, holding an iPhone with a candle burning and a chocolate cup cake singing happy birthday.  Not long after this, she received a call from Levi and myself singing a very poor rendition of happy birthday that made the Marilyn Monroe version sounding like Mariah Carey.

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We both managed to get a leave pass as Angela took the Jude shift and Nan took the Levi shift. This was some much needed adult time away from the ward which we both needed. We had initially thought that we would make our way to one of the local places, but after a quick discussion, this was quickly ruled out with Jayde wanting to go somewhere that we would not normally go. So after a quick brainstorm, it was off to this little cafe just off the Eastern Distributor that we had past so frequently on our trips to and from the hospital. There wasn’t a big gluten free selection, so I had to settle for a bit of a salad, well one salad to be blunt. It was either that or a cake, which didn’t really sell itself as a lunch. To make matters a little more concerning, it was a kale salad, but, as the gentleman that I am, I decided to take one for the team and ordered my (protein free) kale salad and Jayde ordered a roast pumpkin salad. All I can say was wow, it was a beautiful lunch and the only complaint was that there was not enough salad.

After a wonderful lunch, it was time to make our way home, well back to the hospital, but I would be lying if I admitted that the thought of grabbing the boys and running back to our real home didn’t cross our minds. So with the relief sitters relieved, it was back to our normality with me taking the night shift and Jayde taking a couple of much needed nights to spend in the apartment. At present, both boys are doing amazing, we are continually getting told by our team that Jude is doing fantastic on paper. Though, we are just waiting for the day that the dreaded ‘but’ is going to pop up in conversation on the morning rounds. The little guy is constantly putting on a show for the nurses, doctors and mum and dad, but what truly makes his day, is when Levi visits. The look on his face is nothing short of elation. We now have to maintain the isolation of Levi to ensure that these visits can continue.

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How do you measure a priceless gift

The day came, day zero. The day where Jude’s life of being CGD symptom free was to begin, if all goes well. The day is a little misleading, there is still a long way to go, a very long way. It is not like popping a magic pill that provides a cure for all diseases, this was the day that Jude received the amazing gift from a stranger, a world away. The day started off like any normal date stuck on the ward, in an isolation room. Jude’s appetite was gradually declining and there was an obvious concern on the morning visit from the team, though nothing to cause a dramatic change in the daily routine. However, this wasn’t the first thing on our minds, what we really wanted to know was the current status of the bloods that were taken less than 24hours ago on the other side of the world. Jude’s new marrow was currently sitting in the lab a few hundred metres away getting processed and any ‘extras’ were getting removed. This was cause for excitement. The knowledge that this life changing blood was so close was enough to change the mood of the room. It was also enough to lure the both of us to the room as Nan looked after Levi for the day.

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Shortly after 12, Jude had finished his lunch when the bone marrow arrived. For those that don’t know what this is like, imagine a thick blood like substance, not much, and in this case it was around 135ml, but that is enough to make the world of difference to Jude. The bag was hung after posing for a series of photos, by itself and with Jude (however, Jude didn’t get the chance to touch the bag). With bag hung, machine hooked up, the marrow flowed down the line and into our beautiful little boy, you could almost visualise the marrow flowing into his veins and taking up residence in the free accommodation that the 10 days of conditional chemotherapy had made available. The actual transplant was maybe a little more exciting for mum and dad than it was for Jude as we watched every little drop trickle into the line, this was, literally the life blood that is going to change, not only Jude’s life but ours as well. An hour later, it was all over, all cards were on the table so to speak. Our wonderful donors marrow was now flowing freely through Jude’s veins and if all goes well, was following the road signs to Jude’s now, vacant marrow.

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There was nothing left for us to do, but wait and maintain a safe, sterile environment for Jude. The easy part was over. Getting Jude to this point was by far the easiest part of the road ahead. The countless hours that we had laid awake at night worrying if we were actually going to make it to this point with the knowledge that even a simple infection could have thrown a spanner in the works had all paid off. Though the road hadn’t always been smooth sailing with the leg infection resulting in countless consultations with our transplant team to discuss the feasibility of proceeding with the transplant or opting to delay the date. From this point onwards, the power of positive thinking, hope and the trust that we place on our transplant team is all we can do. Jude’s part in all of this is probably the most complex and difficult. It will be up to his body to ensure that this precious and priceless gift takes up residence. The remainder of the afternoon entailed with the two of us managing to spend some much needed time with Jude and absorb the enormity of what had just occurred. To say that it was an emotional date would be an understatement, Jude however, was oblivious to what had happened and decided to put on a show for the nurses by showing his dimples in an attempt to lure them in to his web of cuteness. He was successful on all counts.

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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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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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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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Life’s Curveball

Filling time in hospital is something that we never think we will need to actually do. Until something happens that you just don’t plan for…. Recently the cosmic universe decided to throw a curveball at us the size of a planet. I liken it to walking down a sidewalk blissfully listening to some classic jazz and getting slammed in your six by a semi-trailer.

My son of 20 months was diagnosed with a genetic disorder called Chronic Granulomas Disease or CGD.

4 weeks ago (16th April) I had no idea what CGD was let alone that a mere 1 in 200,000 are diagnosed with it. But to find out that my little guy had this genetic disorder was like getting slapped in the face with a house brick and asked if that tickled. So we were all off to Sydney Children’s Hospital for treatment. The first indication that something was askew was his liver infection that was directly caused by the disease. It had allowed a nasty piece of bacteria into his blood stream and directed it to a comfortable lounge room to take residence in what just happened to be his liver. The nursing team at Sydney Children’s Hospital (SCH) were nothing short of amazing, comparing them to our local hospital here in Canberra was like comparing a triage tent in the middle of world war 1 to a futuristic hospital run by robots with a refined bed site manner of a high end aristocrat serving tea. The SCH staff engaged our toddler like a little person, asking him if he was happy for his observations to be taken, and if he shook his head in a gesture of no, then they would accept that and move on til he was ready.

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By the second week we were beginning to become a little stir crazy, though we were renewed in faith in that there were individuals that were in situations that were a lot more difficult and depressing than ours. Without sounding morbid, we were in a far superior position in that we had the initial thoughts of a plan been formed in our medical team and it is a strong team at that. Although this was going to be a long road with plans for bone marrow transplant and the like, at least we know that is where we are headed.  So after many tests and a rapid education campaign for us, we became entry level graduates to the world of CGD. Then the next pebble hit the pond of our universe causing a progressive ripple through that would result in another upheaval of our world. “Given that you’re expecting another child, you are going to have to find out the gender so we know the percentage chance that it will carry the same genetic disorder”… BAM, the potential for number two having the same disease.. Didn’t see that one coming.

So the tests went on, and in the essence of no-disclosure, we were told the odds and needless to say, regardless of gender, if it was a horse, you wouldn’t be betting your house on the outcome of our unborn been genetic disease free. By the third week, I decided to keep myself entertained and purchased the titanic in sheet metal to build whilst I sat bedside. Any normal person would have taken the opportunity to take a walk during nap time or take up cross stitching… not me, I utilised my time to pushing out the stainless steel metal parts that were no bigger that my finger nail at the best of time and proceed to mold them into the shapes that the instructions told me to.

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By week four I had finally completed the titanic model, and at my instructions I asked Jayde to swiftly hit me over the back of the head if I was to ever attempt something as foolish as that in a hospital room with a 20 month old child running about. Levi was beginning to make substantial progress on the recovery path and we had found out that our unborn child was a male and had a one in two chance of having the same disease. As we moved forward with Levi’s recovery, he finally had his central line removed after many a stressful night. This removal was a relief to everyone, including the nurses who had to endure my emotions and often anger at Canberra hospital for using a type of line that had not been used in SCH for around ten years. With the removal of the central line and the NG, Levi was packing on the kilos and using that excess energy to burn around the ward with his plastic shopping trolley. The midnight ward walks were common place as I often made my way to the kitchen to make a Vegemite sandwich for Levi who seemed to be always hungry.

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After a steady recover and a decrease in Levi’s white blood count, it was clear that the doctors had managed to get Levi’s liver infection under control. There were no more requirements for blood transfusion and we could see the light at the end of the tunnel. It seemed like we had passes this hurdle. we became a regular sight walking the corridors in the middle of the night as Levi had found that his legs were a better form of transport than having his dad carry him round. To quote a song, his legs were made for walking and that’s what he is gonna do. On the 10th of May we were given the news that we were free to go home, with a crash course on how to use syringes and a swag of medicines, we were free.