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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

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Sands through the hour glass

How does that intro go… “Like sands in the hour glass, so are the days of our lives”, or something like that. I never really understood that metaphor, well to be honest, I never really gave it a second thought whenever I heard it as background noise as I went about my business and someone had left a television on. It seems that father time has no limits, cares or concerns for those around him. With everything that is going on, that sand just keeps on falling. I am not sure who I should really blame for that falling sand, Newton or Einstein, your theories are just a right pain in my backside. Why can’t our lives just be suspended in time so we can return when it is normal. But, alas, it is the complete opposite, as it continually seems like time is just accelerating and we are on this whacked out roller coaster. So fast are we accelerating that we have not had a chance to jot down any of our thoughts and experiences with these two amazing boys.

Where do I start. one may say from the beginning, but that would be too logical. Logic left the building sometime ago, and similar to a “No Junk Mail” sign, there seems to be a “No Logic” sign painted on the driveway. Yes, the driveway, for those that were not aware, we are home. Our beautiful, if not somewhat in need of some repair and TLC home. We had a visit from that dark mistress called depression, who just decided to swing past and grab a coffee and overstay her welcome. It was sort of like one of those long lost relatives who just turns up on your door and asks to move in, sort of awkward but you know that you just can’t get rid of them. Let’s just cover the last month, that seems like the best place to start.


On the 1st of March Jude hit the day 100. There were no balloons just another sigh of relief as we travel this road. Around that same time we were given the green light to come home. Needless to say, we were sort of experienced in this, though it still amazed us as to how much crap one collects in such a small amount of time. After several attempts at packing, we watched as RMH disappeared in the rear view mirror. Coming home was wonderful, this was the first time that Jayde had actually been home since October last year, so it was a real novelty for her. I managed to persuade our wonderful neighbour to pop in quickly with our impending arrival and run a vacuum across the floor which was gratefully appreciated. As the car was unloaded, and the back deck quickly overpopulated with bags, Jude was running on all cylinders. The ability to run from one end of the house to the other did not grow old. He was happy, happy to be home, happy to have his own room back, just happy.


It was back to work for me the following week, it was obvious to anyone that saw us that all was not well with our world. The boys were happy but we, not so much. I don’t want to bore you with the details, depression in itself, and anyone that has experienced it, is, well, depressing. It is normal to feel down, I would even go as far (with my not so extensive medical background) to say it is healthy. But the ability to bounce back, is what makes depression truly terrifying. By experiencing the lows in life, you truly appreciate the highs. Though when this mistress called depression came knocking at both our doors, it was a visit that was not unexpected and long overdue. I say that as this is not a sprint to the finish, this is like an endurance race, and we have both been running for so long. In the words of a colleague, “you look exhausted”. Those words couldn’t have come at a more appropriate time. We are so tired, in fact, we have had conversations about this, we need to create a new word as “tired” is becoming a bit tired. One thing to note from my personal experience in the last month, is, if someone ever tells you that they are depressed, the last thing they need is time to reflect. Loneliness may be a good aphrodisiac, but rest assured, it is not a cure for depression. So, this is as it was for a couple of weeks after we returned home. We became reclusive, family took a back seat as we continued with our lives. The occasional message from friends asking how we were doing was appreciated, though it became very hard to talk about it, so we both got very good with deflection.

On that note, both boys are doing extraordinary. Levi is coming ahead in leaps and bounds as he is progressively weaned off his medicine and although we are still so far away from a date that everyone is happy with, we are never the less closing in on it. Jude on the other hand still has a long road ahead of him. Coming into this, we were both worried. Thinking about the potential outcomes often brings us both to tears. But, he perservers to defeat all odds. Though, this is what makes us scared. Jude is the sort of boy that can hide things really well. We have said since he was born that he is either going to be an awesome street performer, or Australia’s leading neural surgeon. He is Brain to Levi’s Pinky, and Levi is very bright. His ability to act tough, makes it really difficult to pin point when things are declining. So we watch him like a hawk, looking for any little sign that something may be going wrong. His bloods are always an indicator for this, though that is an issue in itself. Having had so many needles, his veins have begun scarring, making it very difficult for them to take bloods. He holds the record for 5 punctures to get a full blood count.



Last week we attended yet another clinic visit. We were a little concerned as the boys consultant had specifically requested this clinic visit so she could catch up with us. Consultants are funny things, they are the brains behind the operations and you really only get to see them when things are going wrong, or in this case, they are on clinic that week. So it was with a sigh of relief that our consultant popped in to give us a regular, if not ordinary update on the boys and tell us that she was extremely pleased with their progress. During the visit, we were also engaged by a journalist for the Daily Telegraph as part of the upcoming hospital’s gold week charity event.


So as we come out of the month of March a lot has happened. Not so much with the boys and the medical side but more so on the emotional and phycological side. I have lost count of how many people have commented on how strong we are and how lucky the boys are to have such rocks as parents. But in reality I don’t know any parent that is hard all the way through. There has to be somewhere inside that hard egg shell to keep the soft squishy love, pain and fun.

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The normal theory of luck

I was recently asked to deliver our story at the kick off for the hospital foundations first big meeting for the year. With our boys condition, this was not the first time we have been asked to tell our story and I hope it is not the last. We have been told on countless occasions by people from all walks of life that it is a powerful story and one that is both inspirational and moving. Having lived it, I can see the resemblance to neither. Though, both of us deemed it as an honour to fulfil the brief of bringing a sense of realness to the meeting. So as I stood there, in the back, mentally preparing to once more tell our story. At that moment, my mind flicked to an article that Jayde had shown me a few days before. The article was written from a mum whose child also had a chronic disease and really placed a perspective on what it really means to be lucky. My reflection was quickly shattered as the group were asked to recount something positive and fun that they had done over the christmas break. I listened. I felt my eyes begin to water. I was thankful that they had opted to do this outside as I had the protection of my sunglasses. The stories that were recounted of the christmas break were amazing. They ranged from having a barbecue in the backyard to playing on the beach and letting the kids squeal with delight as the waves chased them up the beach and flatten their newly built sand castles. Thank god for the sunglasses. So this was what “normal” was.

It was at this point that I realised, I have no idea what normal is. I can never stand there and criticise another parent for allowing their child to take their hands from an unclean surface and stick them in their mouth. I have no right to make a comment towards a parent for allowing their child to lick dirt from the ground or eat a mud pie, or even share their food with a sibling. I do not have the experience to comment on someone allowing their child to not have at least one medication in a 24 hour period. If I was asked to take care of someones child that did not have a special need like line care, testing of a nasal gastric, administering medication every few hours, ensuring that the 1300ml of fluid intake was adhered to or writing down every bowel movement or urine output in a 24 hour period, I think I would freak out.  I am sure by now, to the idle passer by, that we must make it look like a breeze. A simple process of “this and that, must equal everything”, but that couldn’t be further from the truth. The analogy of the duck swimming is befitting, but I would say that it would be more like a duck swimming up a waterfall. It is at this point that I measure our luck. I have often wondered if am a terrible person as I often find myself gauging my luck on the severeness of a the boys condition. I find myself thanking the stars that they have a chance as I look around and see the world around me that is a hospital. The care requirements of our boys shallows in comparison to some of the other kids out there and I find the tears welling in my eyes as I think how lucky we are.

Family at the park

As I spoke the words of our story, I could see that I was not the only one with something in my eye. For me, it is an easy story to recount, if they were only just words. But they are not. The experience is there, the highs and the lows, the laughter of seeing both our boys quite literally taking many of their firsts in the hospital. I spoke of many of the positives that we had experienced, glossing over most of the negatives as these are often too hard to talk about. Watching Levi taking some of his first real unaided steps on one of the wards, seeing Jude start to crawl across Levi’s transplant bed. How lucky I am, as a dad to have had so much time to spend with my boys as they navigate their way through some of the most difficult times in their lives, and they have not even made it to puberty. That is how I should be measuring my luck. I shouldn’t measure it on the success in the lotto, nor the ability to grab the perfect seats at a concert. Luck should be measured on ones ability to keep their child safe, from themselves, from others, from the unseen and from the unknown. How is this possible to keep your child safe from all of this if it is not for luck. No one has the right to comment on how lucky you are if it is based on their personal values and experience of what luck should look like. It would be lucky to see every bed in a hospital empty with the eradication of every type of cancer and genetic disease from this planet. But, I can’t take luck to the bank. What I can take is positivity, though more often than not, this is being tested more and more to the breaking point. Of late, I am more often than not, finding myself in an internal battle with negativity and disappointment swallowing any trace of positivity whole and crapping it out just as fast. I am worn down. How much more is left in the tank of positivity.

Playing Trains

We have both had long discussions on whether we have done the right thing with putting Jude through the system so soon after Levi. With Levi only just recently hitting a year past day zero, this line of internal question has never sounded so much louder. Then, as quickly as the question is asked, we find ourselves countering our own argument by reminding ourselves of the importance of giving Jude the most out of his life.  Both our boys are amazing, and I have always said, that if you were to take away their genetic disease and the need for all of the hospital visits, we would have the most perfect family in the world. But, there is always that dark shadow, that constant reminder, the fear of what tomorrow could bring. That is not “lucky”. As Jude approaches day 80 of his 180 days of protective isolation, the realisation of going home is becoming more and more real. With the thought that our safety net being ripped from under us and are once again thrown to the wolves of reality and “normality”, we are scared. The family will remain under strict protective isolation, and neither boy is cured yet. The possibility of a rejection for either boy will continue to remain. With the studies only showing 5 years out, we are in pioneer territory and the “wildness” is looking like a very scary place right now.

Water Play Time

So is it ironic that I say that we are the luckiest couple in the world? I don’t think so, based on my somewhat distorted view of the world. We are blessed with two of the most amazing and resilient children that I have ever met. Their patients and virtue would make most adults blush with a level of shame. Their sincere honesty, although often heart wrenching, is an attribute that was striped from most politicians. They resist the urge to be disappointed when faced with the most disappointing situation that would make even the toughest adult disappointed. They hold back the tears as they are stuck with a barrage of needles for the seemingly never ending tests that would leave the toughest person a blubbering mess. Whilst all of the time, they turn to us, for the strength to continue, the strength to fight, the strength to persevere through the assault of treatments that they need to live a “normal” life. I fight the emotions, every day. The people that surround us whilst we are relocated can see the strain and pain written across our faces, and in the words we speak. We hide the turmoil and fear that we face daily, for the sake of these amazing little soldiers. This moment, this time, is theirs and theirs alone, and not a day goes by that we allow ourselves to forget that.

Brotherly Hospital Time

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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.


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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Nearly a year ago

It is hard to believe that nearly 1 year ago, Levi was preparing for his Bone Marrow Transplant. The time has flown by and by some coincidence, I have managed to take a very similar photo of both boys at the same stage in their treatment schedule.

Levi after bathtime
Levi after bath time
Jude after bath time
Jude after bath time

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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.

IMG_5236 IMG_5243

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.


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.


Blog Jude's Blog

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

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

Lucky I’m a very forgiving person.

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Blog Jude's Blog

The upside of Chemo

What a difference 24 hours makes!!

It would appear that we have turned a corner… from our sad unhappy little man of the past few days, we have silly, crazy, happy Jude back!! I can’t tell you how much we have missed him!! Our little showman is back to entertaining all who enter the room and is very much back to being like the puppy in the pet shop window, desperate to win you over with his antics.


Though with a better mood it doesn’t mean we have been drama free, with Jude’s central line deciding to give us a scare. Both of Jude’s lumen’s decided to get harder to draw back on, which meant that when they were trying to take his daily bloods for testing, his blood wasn’t flowing as freely as it should. The white lumen had a visible clot that could be seen in the line and his red lumen had his blood clotting as it was coming out of the line. This can be common, so we were told. The first step was to run some anti-clotting agents down the line called heparin. Unfortunately they didn’t do the trick, so we had to call for something a little harder hitting and a little riskier called urokinase. The positive about having urokinase in the lines was that Jude had to be unplugged from his machines so that the anti coagulant could just sit in the lines and do their thing. So Jude was unplugged and free to roam his room for 3 hours!! He made sure he took full advantage of the situation, and explored all those things that he had been looking at though unable to touch. The good news is that it worked and we now have a full functioning central line again.

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