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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