Tag: Bone marrow

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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 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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Levi's Blog

Chemo, round three, ding ding

Today was the last day of the “nastier” chemo on Jude’s treatment protocol and we were all anxiously waiting to have the day behind us. It started at midday as usual and the nurse and I were repeating the mantra “the next 3 hours are going to be uneventful”. Thankfully it seemed to work, as Jude slept through most of the treatment and his stats were all in the realm of normal. His oxygen levels did raise some slight concern, though all in all it was a wonderful “boring” end to the Alemtuzumab.
At the moment poor little Jude looks like a miserable puffy frog, just sitting in his cot not very happy with the world right now. He is loving regular cuddles, though there are no dimples or laughter from our usually happy little man, just a sad little face.

Jude looking sad

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Chemo, round two, ding ding

As we entered our second day of Chemo Jude seemed a little more prepared for the task at hand. However, seeing the nurses bring in nearly every recovery apparatus before they start treatment is always a little unnerving for a parent. For any one that has a pharmaceutical background, the troublesome drug that they were worried about is called Alemtuzumab. With the knowledge that this drug is commonly used in the treatment of chronic lymphocytic leukemia it’s no wonder Jude was having a bit of a reaction to it. So with the hatches battened down, it was off for round two. An hour and 30 minutes into the 2 hour treatment he had another reaction, not as sever as the last, though enough for them to pause the treatment until they were happy he was stable enough to continue. His skin went mottled, blood pressure was high and lower oxygen saturation levels were a concern.  Since his first round of chemo Jude was holding an additional kilo of fluid!!  With the additional fluid onboard this also was making him work just that little bit harder, so they gave him some oxygen over the next 12 hours to help him along. Thankfully that was as exciting as it got.

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After his treatment, it obviously took a lot out of him as he spent a large portion of the afternoon catching up on some much needed rest.This gave us a few moments to catch up on our thoughts and re-center ourselves after a very long, and stressful week. It also gave us a chance to take stock of what Jude was eating and realise the inevitable trend that follows every Chemo treatment. The loss of appetite is something that is manageable, and one has to get past the sheer wastage of food that follows as the taste buds begin to get destroyed and things that they know, no longer taste like they used to. I still remember, giving Levi some of his favourite foods during his transplant, and the sheer look of terror as he looked me in the eye and may have well accused me of feeding him steamed brussel sprouts.

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Meanwhile back at the apartment…. Levi managed to get a bath in and do the dinner dishes (naked chef style) before getting ready for bed, then it was up to the ward to give Mum & Jude a quick hug and a kiss good night before calling it a day.

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Chemo, round one, ding ding

The oxford dictionary defines admission as “The process or fact of entering or being allowed to enter a place or organisation”. This definition could not be truer to describe Jude’s admission to hospital on the 12th of November 2014. However, Jude did not really have a choice in this matter, as the alternative is not worth thinking about. We have never had any doubt that Jude is a very different child to Levi in every sense of the word. As Jude entered the world that was his room, there was no excitement to be seen on his face, the last seven week admission in the ward next door had wiped that excitement clean off the slate of any elation that he may have felt about being locked in a 4m square room for 3 months. The overall thought process was adequately described when the door closed behind him and he immediately pointed to be taken back out of the room. However, that was the last time he was going to be allowed to pass through that door until his engraftment is completed. Fortunately, prior to entering the room, we did give Jude some time in the playroom, where he got the opportunity to be bossed around by his brother.

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The realisation on Jude’s face as he become more apparent that this room was to be his home for what would feel like a life sentence for this little guy was heart breaking. You could almost see the will being sapped from him as he found his way around his new cot. This was a very different experience to what we had with Levi, and we instantly came to the conclusion, that there was not going to be any comparative analysis to what we had gone through nearly 11 months previously. Unfortunately, the doctors and nurses failed to get this memo as we began to get the annoying and distinct feeling that they thought we were experts in Bone Marrow Transplants, they could not be any further from the truth. The constant use of lengthy medical terminology and the often to common statement of “you have done this before so we won’t bother explaining it to you again” was, in short, beginning to piss us off. We put our personally feelings aside and focused on what was important and put the request in to reduce the mattress size to the correct height and minimise the risk of Jude suffering a head injury as well as the all to common moving into the room. The desire to run from the room was not limited to Jude, we continued to question ourselves and the decisions that we have made to go through with this, but, there was no running, we had raised our sails, harnessed the wind and chosen our tack to take. This was to be Jude’s journey, and we had to be his advocates to get him through.

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That positive energy was very short lived as Thursday came around. It started off so positively as we were moved into an isolation apartment with Levi so that he could have unimpeded access to his brother. Our team had advised us that if there was to be any possibility that we were going to keep the family together, Levi was not to have any contact with any other children, which was going to be a challenge if we stayed in the house with the other families. But then, as Jude was 2 hours and 15 minutes into his first 2 and a half hour run of Chemotherapy, disaster struck. Jude was sitting at the end of his cot, seemingly alert, however, “seemingly” can sometimes be a very loose term. He crawled down his cot, and within a matter of seconds, his skin mottled, his pulse shot to over 200 beats per minute, blood pressure fell through the floor and oxygen saturation began to drop. On top of all of this Jude’s temperature began to rise and his body began to convulse. This was not a normal response and no parent should have to witness their child going through this and our hearts were breaking as we stood there trying to comfort him. There was no hiding the pain and conviction in his eyes, the beautiful hazel eyes looked at both of us and you could see the question, “why”? It is just not fair.

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I don’t apologise if this upsets people, it is not my intention but I fear that it is a consequence of our story, it is not sunshine and lollypops, this is reality. Some people will understand and we love you for that, others will criticise us for sharing to much, and I pray that you will eventually understand our reasons. The truth of the matter is, this first day of chemotherapy has scared us both, and in truth, we do not know what to expect regardless of the fact that less than a year ago we were sitting here typing one of Levi’s first Blog entries. Regardless of how strong our boys are, nothing can prepare you for this, regardless of how much research you do and what people tell you. I have being asked on numerous occasions from people all over the world, what words of wisdom can we offer having gone through this before, the only words of wisdom for anyone is take life a day at a time, appreciating what is special to you and be the strongest advocate for those that do not have a strong enough voice to make themselves heard.
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Life passing you by

Looking back over the past week, it seems like such a blur. Only a week ago, Jude was an inpatient at Sydney Childrens Hospital as the team fought to get his osteomyelitis under control in preparation for his Bone Marrow Transplant. So when we were given the all clear to head home to get our affairs in order for a week, we took the bull by the horns and in similar fashion to a Road Runner cartoon, “beep beep”. So with a week to get the house in order, and sort out all of our affairs at home, we found ourselves sitting at the table at the end of very long days and not sure what to do with ourselves. So as the weekend came quickly around, it was all hands on deck as we madly packed up our lives for the upcoming 3 months plus that we knew we would be spending in Sydney. Packing ones life up to go on holidays is very different to packing up a life to go to hospital. It is a case of not knowing what you are going to need and when it comes to spending your days in hospital, what may seem trivial, is actually a matter of comfort and sanity to break up the often depressing and non-rewarding existence that is hospital living. So as we worked out what to pack, and more importantly how to pack. The packing ritual was often broken up as we hugged our beautiful girls as we knew it would be some time before we can a chance to see them again.

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Car packed, house put in order we pulled out of the driveway for the now to familiar road to Sydney. Moving into our room at Ronald McDonald house is always fun as we played Tetris with our belongings. Yet somehow we managed to pull it off yet again as the lights went out for another long difficult day, however our thoughts were not far from the impending conversation that we knew we were going to have the following day. So as the sun seeped through the crack in the curtains on the Monday at 5am, Jude was wide awake and therefore, so was everyone else in the room. Today was the dreaded transplant conversation that every parent never wants to have. This is the nasty conversation where you hear the truths of the process and find out that it is, unfortunately not a simple process where somehow, somewhere, a donors tissue is magically transported into the recipients body. This is where you hear the statistics, the failures, the risks, the consequences. This is where you wonder if, as a parent, are you truly doing what is right. You second guess the decisions you have made to date, and the decisions you will have to make in the future. For both of us, the outcome this discussion was no different. As we left the meeting, we both felt emotionally and physically drained and true to form, words were not readily available to truly articulate the thoughts, positive or negative that were now freely flowing through our minds.
In the interest of ensuring that we are always busy doing something for the boys, immediately after our meeting, we were ushered into clinic for Jude to have some blood workups completed. Fortunately this was only going to be an hour visit. Unfortunately, Canberra Hospitals reputation once again preceeded them as the nursing staff realised that in previous weeks central line care (the line that they use to access all of Jude’s bloods from and need to be able to administer his chemotherapy drugs amongst many others) was not flushed and as a result, had blocked. So our hour trip, almost resulted in a cancellation of Jude’s Bone Marrow Transplant as the staff began working through their procedures to unblock a line. This of course came with many other risks and complications that we may not be aware of for some time, as a block line, could hold a variety of infection, that may or may not become apparent during his chemotherapy. Once again, we began to question our decision to proceed with his treatment as we left the ward some 5 hours later.
Knowing that in only two days, Jude was to be admitted for the start of his long journey, we began battening down the emotional hatches as we prepared ourselves emotionally for the next leg of our little mans journey through life. Knowing that the next two days would be the last opportunity to breath the outside air for some time, we made the most of it by spending every waking moment with the boys, however adding to the complexity, Jude’s isolation, and by default Levi’s had already begun.

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Day 0

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A Modern Day Superhero

Tonight on the other side of the world a superhero is giving an amazing selfless gift, he is giving my baby boy the hope that he could live a CGD free life.

To the healthy 26 year old German man who’s bone marrow perfectly matches Levi’s in every possible way, I’m in total awe at the wonderful donation you are making. You are probably prepping for a painful surgery as I write this, for a little boy who you don’t even know and a family who are overwhelmed by your generosity.  I can’t thank-you enough.  We are looking forward to contacting you in 12 months time, to thank you personally and let you know how much our healthy little man is thriving because of your gift. Thank-you, Thank-you, Thank-you!!