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Day minus 5

Today was a routine day. With an exceptionally early 4:30am start to the day Levi was wired & ready to go. Just when you thought he was ready for a nap, he would muster energy and not just over tired energy, out of control freight train kind of energy. Obviously chemo hypes Levi up!!
It was a good day full of play, food and some quality family time. Levi is loving making games out of all the medical equipment, today the purple gloves were a hit.

Thanks to Zoe & Lucas for sending Levi an etch a sketch, he loves it.

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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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