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Chemo, ding ding, round one

Bone Marrow Transplants (BMTs) are great if nothing happens. Friends that have been through this process often wish that we have a boring transplant with nothing exceptional happening as they are the best ones to experience. It takes a little to get your head around that concept but when you start thinking about it, boring in a hospital context means “routine” and “routine” means that it just happens normally. Today, unfortunately was not “routine”. It started off with the kitchen forgetting that Levi was a patient at the hospital, but once that was sorted, it was looking up. Levi had a full tummy and normal observations, Angela came in to relieve us and we were able to make a quick escape in the real world for some fresh air and warmth.  I was even able to grab a couple of hours of “catch up” sleep as the night duty is already taking it’s toll. Then Chemo started….

IMG_3800The first few days of chemo will see Levi getting a particularly harsh drug that they expect adverse reactions with, so much so that they keep a nurse in the room during the 2 hour administration of the drug.  It was a little rough though he managed to sleep through majority of the treatment. He woke at the tale end of the treatment and decided to demonstrate his projectile abilities as he wasn’t a fan of the vomit bag.

Fortunately Jude was happy to entertain himself in his cot with the occasional squeal for his mum to poke her head in, we are just so grateful that he loves his toes.

It was only when his first round of chemo was finalised that he decided to record a temperature above 38 degrees, which is the magic number which makes any medical professional nervous when they see that figure in a patient with a central line having chemo. So it was 30 minute observations for the little guy for the rest of the day. In the later part of the afternoon Levi was much brighter, we managed to secure some Play doh and a wooden train set from the Play Therapist to try and make the side effects of the Chemo more bearable for Levi and it seemed to work.

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At around 8:30pm Levi’s temperature dropped into the low 37’s, his breathing, heart rate and blood pressure all began fall back into the normal range. Blood culture were taken and it will be around 48hours before we find out if it was the chemo or an infection that caused the abnormal spike. So far Levi is one for one in his chemo treatments and although I would say we are not looking forward to his second round, he is trooping through the process.

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Admission

As I sit here and look back at the last 24 hours all I can say is wow! How did we just pull that rabbit out of a hat. Having arrived last night from Canberra just before midnight we were up with Levi at his normal 6am calling hour. It was up to shower and assess the state of the room. It was almost like the car had thrown its contents into our small room at RMH and quickly driven off leaving us to sort through the chunks. So after plowing through the contents I managed to pack some gear into a bag for myself and Levi grabbed his penguin bag and we were off laden like pack horses, we made our way to the admissions desk. Now I know I am his dad so I have to be proud of my boy, but I have to say that the cuteness that oozed from Levi on the way up to his ward filled me with pride.

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Onto the ward we were shown our room, everything, and I mean everything was sterilised upon entry and it was all stowed away. Levi was happy to be free of all lines at this point and made certain we were aware of it as he tore around the ward looking as cute as ever. At around 12, he eventually crashed out on his bed. This was the first bed he has ever slept on and it seemed to fit, or we just really like a challenge, still undecided on that one. 15 minutes later we were told that Levi had to go for a quick chest xray. Jayde had little faith in my ability to transport the little guy without waking him up so it was up to me to collect the evidence that it was mission successful.

IMG_2683Back in the room, Levi was hooked up to the IV to get his central lines working again, as sitting in hibernation for a week had meant that the lines were not working as expected. A few hours later, and a run down on what we should be expecting for the next hundred or so days the tests began. Levi to all his credit was more accepting of the procedures this week than what he was last week, but then, he doesn’t really know any different and it is possible that when he is in a hospital bed, the tests and procedures are just the norm. As the night approached, there was time enough for a quick family photo and a good night kiss to his baby brother and mum, then it was off to bed with his first round of pre chemo medication under his belt.

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We made it!!

What a long day…

Those that know us well are aware of the usual panic that goes on before we go on holidays, a tornado of last minute angst, tasks and packing. Today wasn’t any different. How do you pack up your life for 3-4 months to accommodate the unknown. It was easier to pack up our lives to head overseas, than 4 hours up the road!!

We hit the ground running at 5am to try and get some of the major things done before the boys woke and Nate headed off to work.  As packing with a helpful toddler is always a challenge, a balancing act of timing and pre-empting the unpredictable nature of a 2 year old.  Sometimes it works, though more so than not it’s a lot of juggling around them and seeing what you can cram into a 15 minute episode of Thomas the Tank Engine, provided he sits still for that long.

Coming into this week was quiet a stressful exercise for us both, and it was apparent as to how stressed out we were when Nate took the fish to their holiday home.  The fish were bagged, tagged and ready for transportation when I had noticed the fish tank sitting in it’s usual spot full of water. I was a little confused, though didn’t really think much of it at the time as I had my own tasks to deal with.  When Nate finally got home it was the embarrassed look that gave away that he had arrived on Sonia’s doorstep with the fish and no tank!!  Many thanks to Sonia for not only looking after the fish, though being such a good sport and lending us your fish tank on a moments notice.

Jude thought in all this chaos that today needed a milestone, he rolled over from his back to his tummy for the first time.  I’m guessing that this roll was done more as a defensive manoeuvre to get away from his big brother than a statement that he was progressing in his development!!  Though it was a timely reminder that this was the last day we would be home for a few months and to take some time out with the boys and just enjoy the moment.

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With the car packed to an inch of it’s life we finally got on the road & made it to Ronald McDonald house and into bed before midnight. I am still at a loss as to how we managed to pull that off. A huge thanks goes out to Miss Christine for looking after our beautiful girls over the next few days, it definitely made it easier on us all.

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Yes our kids are sick, but…

Since Levi was first diagnosed with CGD back in April we have done our best to not treat him like a sick kid.  As we have come to realise that this is Levi’s normal, he doesn’t know any different.  While other kids can play in the dirt & the leaves, our kids have never known that so don’t know that they are missing out on anything.  They have lots of other experience that negotiate those environmental factors and are their “normal”

Just like Levi, we have only ever know what is means to raise a child with a chronic disease, we know no different, this is our life. So it surprises me when Levi is treated like a sick kid by other people.  Yes our kids don’t have an immune system that works, though we work around that on a daily basis.  It has taken many months of counselling to get into a frame of mind that is positive and to not dwell on the negatives, as life is short.  Though it can be hard when you can see your child being treated differently by those around him.

Yes Levi is having a bone marrow transplant, though don’t treat him any differently than you would any other any other 2 year old.  He still needs to learn boundaries & manners like any other kid.  Obviously Levi will have bad days and he will get concessions on those days, though at the end of this process we would like our little man to be the best version of himself.

The thing that is making it tough right now is when people act like this is the last time they are going to see him.  We pickup on that, Levi senses that & it upsets the whole family.  Yes this weekend was particularly rough on all of us.  This was suppose to be a “quiet” weekend for Levi, for him to hangout in his own environment, as he isn’t going to see the places he loves and feels comfortable for a few months.  It turned out a little differently than we expected, with the whole family feeling exhausted and Levi becoming very emotional and unable to express the feelings he was experiencing.

We start the process of BMT next week, though we are still trying to keep Levi infection free, pack-up our life & have some family time in our home.  It might sound like a simple list, though we are doing our best to channel ducks right now, appear calm on the surface when we are really stressed out and paddling ferociously.

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The calm before the storm

We are back home for 5 days before we need head back to Sydney to start treatment.

It’s nice to be back home and do normal things, we definitely know that Levi & his fur sisters are loving it.

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Successful Day

After a bumpy start to the day, it turned out to be quiet a momentous day.

Levi had his central line inserted, bone marrow harvested & the cherry on top was that Levi’s bone marrow donor has passed his health checks and is able to donate his bone marrow to Levi.

Levi is quiet sore from the harvest, though spent the afternoon snoozing it off. He is a tough little guy so I’m sure he will be up and about in no time. We are just hoping that he doesn’t find his ‘chest jewelry’ too fascinating.

As some of the above lingo might be the first time you’ve heard it mentioned, here’s a quick lesson…

The Central line is a catheter that is inserted under the skin of the chest into a vein and will be instrumental during Levi’s transplant for collecting blood samples, (which will be daily in the first 4 weeks & beyond), and for giving medication & fluids.

Levi’s bone marrow was harvested as a backup just in case there are any issues prior to or during the transplant. As Levi will be going through chemotherapy to wipe out his bone marrow to make room for the marrow of his donor, if the donor’s bone marrow doesn’t take he will need his own bone marrow back. Though we are hoping not to use this option, it’s always good to know that there is a backup plan, even if it does mean we back to where we started.

Levi pre central line insertion and bone marrow harvest, January 6th 2014
Levi pre central line insertion and bone marrow harvest, January 6th 2014

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Welcome Jude

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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.