Sydney So Far – the ups and downs & raw details of the journey.

Up until now, we have kept this blog pretty sheltered from specific details of what has happened with Kaden, and only showing the positive steps along the way. However, we now feel that we are ready to divulge more details about what this journey is actually like. Please do not take offence to what you will read, as this is the reality of what it is like for a child to suffer from cancer.

We have been here for 19 days so far! On initial arrival to Sydney we were under the impression that we would be here for a couple of weeks, however we were quickly informed that this was not the case and our stay in Sydney would be for a minimum of¬† 3 months. As you are aware Kaden underwent major surgery on his lungs to remove tumours that had not dissolved already with the chemo. Before we left Perth, we were aware that Kaden would be having surgery on his lungs, however we were under the impression that it would be done via keyhole. Our impression couldn’t be further from the truth. They had to make two 10cm incisions under each shoulder blade giving the surgeons enough room to work with to explore his lungs. Although this was an extremely important step in Kaden’s requirement to get onto the transplant list, the fear and¬†pain we felt while waiting for the results was¬†unmeasurable. We were so¬†relieved when the surgeon called to advise that the surgery was a success, that we both had¬†trouble putting a sentence together, we were just so eager to go and see our son. We were able to see Kaden in recovery¬†where he was¬†able to talk to us and tell¬†us what he needed before they moved him into ICU.¬†We took shifts¬†during Kaden’s night in ICU each needing some time to rest but ensuring our son always had someone by his side as we had done throughout this journey.¬†As you have read on previous posts, Kaden was a superstar and recovered fantastically! As much as he hated us for getting him up and moving around (important part of recovery) he realised that moving made him feel better. Times like that where we could feel and see Kaden’s resentment towards us¬†pulled on our heart strings but as parents, we stood united knowing that this was a necessary step to get Kaden’s recovery on track,¬†especially¬†building the strength in¬†his lungs to avoid pneumonia.

Once Kaden had recovered enough, the oncology team felt there was an urgent rush to get Kaden back on chemo to ensure that the cancer was kept under control. The type of chemo Kaden has been on, has caused Kaden permanent significant hearing loss and also strength in his legs (we have been told his strength in his legs will return), however as we are constantly reminded, we are fighting a disease and these losses are part and parcel of the chemo.

Before we began this round of¬†chemo, we were told that Kaden had to have blood tests on Monday morning. As Kaden’s port (the thing that is under his skin where they put a needle into to take blood and administer chemo) was not accessed, Kaden would have to have blood taken out the old fashioned way, through a vein. For you or I, this would not be a big deal but for Kaden who had to endure several of these already on Friday and throughout this journey, this was something that he really did not want to do. Watching our son beg and plead with us not to allow the doctors to do this broke our heart but it is a necessary evil in the fight against this cancer.

Yesterday we both had a blood test done to see if we were a match for Kaden, just in case we were needed to donate part of our liver to him. Unfortunately Finn is not a combatable blood type, however Lee is. Lee will undertake several tests over the next few weeks to see if he is able to donate part of his liver to Kaden if a donor liver is not available in time.

Today we met with Kaden’s surgeon to discuss Kaden’s operation and give formal consent. As expected, the surgeon had to give us all the possible complications that could happen during Kaden’s transplant (ie blood loss, too much protein being created causing brain damage, having to leave his incision open after surgery allowing the swelling on the¬†liver to reduce¬†in size before taking Kaden back into surgery¬†to close him up), if Lee¬†is to be a donor (possibility of not surviving the op) and also the possibility that after all this, there is no guarantee that Kaden will not get cancer again. If Kaden did get cancer again, due to the immunosuppressant drugs (stops the body from rejecting the liver), they would not be able to treat Kaden any further.¬†Lee and I decided that this was a no brainer & that¬†we would go ahead with the transplant as this is Kaden’s best shot at beating it. There has been many tears shed today and along this journey, but we pick ourselves up and get on with it as it is what we have to do.

On a lighter note, we are making the most of the days that Kaden has out of hospital and exploring Sydney. We have attached some photos of our time here in Sydney so far.

0 thoughts on “Sydney So Far – the ups and downs & raw details of the journey.”

  1. Hi Guys,

    Thank you so much for sharing your brave post – I can only imagine what you guys are going through. I, do however, know what it feels like to be begged and pleaded by a child to not do something and having to be the grown up and do the right thing. It is heartbreaking but you know it is for the best and so with K-Man in time. (sucks being a grown up sometimes lol)
    The love and strength amongst you all is evident and inspiring.

    You guys are always in my thoughts and I just wish there was more I could do to help you all out, but if you can think of anything please do not hesitate to shout.

    Big hugs to you all

    Kris xxx

  2. Oh my dear Finn I wish I was there again to give you a big hug as I did once in the Ward 9 passage back in Feb when this terrible journey that you are all on began. My prayers are for Kaden each day but for you Lee & Liam too. May God hold your hands through this journey giving you the love & strength you need. Sandra Barton ( the hug lady) xxx ūüíē

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