A Break in the Journey

It seems our little soldier needs a break in proceedings. With yet another 2 week delay in the next shot of Chemo due to low bloods and late this week he has tested positive to Coronavirus (another common virus usually responsible for a garden variety cold), and a viral Pneumonia. Basically he is at risk of toxicity and complications associated with that. I’ve heard his doctor say this before and have seen first hand on the ward but in a nutshell his Doctor claims to lose about 3 kids a year not to cancer but to complications associated with being too toxic. The patients get one infection too many and their body too weak to fight it, and it seems that this is what is happening to our little guy. The baseline of little Ed on a good day has definitely dropped slowly but surely over the past month. Perhaps it’s just the high doses of pain relief but whatever it is he needs a break from it all.

We’re meeting with the team on Monday to discuss further but the plan at th is stage is to have a 6-8 week total break from IV Chemo and switch him to oral, maintenance Chemo which is much lower doses to keep the disease at bay. It’s hoped that during this time he will have time to recover, wean down from the pain relief and get home for a bit either on gate passes, total discharge or there have been some very preliminary discussions of even a respite stay at Bear Cottage which is located in Manly.

It does feel like the right decision at this stage in the journey and whilst it’s not constructive to carry or live with regret we will never know if it’s the right one until further down the track when the success of his entire treatment plan will be clearer. Either way, one thing is clear our poor little guy needs a break.

He’s actually been having a 2-3 week break between each shot of Chemo (scheduled weekly) so it’s not really a massive difference only it’s an official break, rather than the daily wait for his bloods to bounce back and he will be a low dose of oral Chemo to help keep the disease at bay.

The good news is that his Coronavirus is enough to put him back in a single room on the The Variety Ward, a place where we all tend to feel much more at home and generally speaking the staff warmer, kinder and more attentive.
The first part of the week was not too bad for Ed and he was in pretty good spirits doing some painting, singing and enjoy some special time with Issy whilst she is on holidays.
Wednesday afternoon was a turning point developing some lung inflammation, crackles on the chest and more lethargy and tiredness.
Thursday afternoon marked the move back to the Variety Ward where I think the excitement of returning was all too exciting for the little guy and he was in fantastic spirits by all accounts from Gramps as Issy and I were off having a girls day-surfing and movies.

Apparently Friday morning he was the best he’d been in weeks, back to his usual tricks of roaring at the staff and ruling the roost from his bed but the morning was his climax and as the day wore on the more tired and unwell he became. Our Friday afternoon completed the week with a chest x-ray to confirm Pneumonia. He also became a little too sedated as the early evening wore on so last night they switched off the ketamine to see if that would help with his lethargic state.

His night was fairly peaceful so we’ll see what the weekend brings.

Below is a pic of Ed’s Bravery Bead necklace. I think I’ve mentioned them before, but each bead represents a treatment or procedure in their treatment
http://www.cureourkids.com.au/bravery-beads.php
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Multi tasking- play therapist on one side, nurse taking bloods on the other
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School Holiday Fun
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Beautiful Issy enjoying some quiet time
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5 thoughts on “A Break in the Journey

  1. What a week it has been for you all. I’m sorry it’s been so tough but I’m glad that you’re more comfortable in the Variety ward and that the staff are all so caring. I”m sure Bear Cottage would be a welcome respite if that works out.

    The photos are gorgeous. Thinking of you all. Praying that next week is a better one for Eddy.

    Alicia x

  2. Oh Ali, I write this with tears for you all… That little darling has been through so much and must be exhausted, as the rest of you… I do hope the break is pain free and as smooth as it can be for you all, and hope that at least you can all be together under the one roof. I so wish I could do something to help u, even though I only met Eddy once, he totally captured my heart completely…. Sending you all my deepest love and thoughts xxxxxx

  3. Your family sprit is amazing, Ali, against so much. We can only hope and pray that there will be a change and that your brave little warrior will come through. We look forward to your posts. They bring heartburn but renew and redirect our thoughts. Much love.

  4. Thinking of you all and the journey ur on ur all an inspiration and an amazing family, sending u so much love and positive energy that Ed will come through the other side be strong think strong stay strong live 2 u all xxx

  5. Sending much love to you all. Glad u managed to get some respite too and have a night out. Mr Wongs rocks. Cocktail night whenever you feel like it lovely. Xxx

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