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Mason diagnosed with Retinoblastoma (child cancer of the eye)

  • Friday 8th April

      8 April 2022
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    💛🧡🌈 MASON 🧡💛🌈

    This little boy received great news this week from the testing we were awaiting and the meetings/examinations this week.

    His right eye enucleation showed no invasion into the optic nerve, a portion of his optic nerve was taken when they removed his eye so that resection margin showed free of tumour. He will be under surveillance for next 2 years for any signs of secondary cancer, with his next MRI in three months, then 3 months again, then 6 months etc. Also he does not have RB gene and the risk of this occurring in his left eye is low but he will have another EUA (examination under anaesthetic) again in 6 months and so on through his life, but MRI and the EUA he just had shows it as healthy. Also not having the gene means low risk of passing this to his children.

    All of this news is a great outcome, the weight this carried was huge to bear, and the days have been a lot brighter. 🌞

    To my dearest Mason,

    You never meant to inspire me, but you did

    You never meant to show me the true meaning of courage, but you have

    You never meant to be my biggest strength, but you are

    You show me on the daily how spirited and gutsy and determined you are

    So, every day I vow to tell you I love you at least 10 times a day

    I vow to stop and watch the sunset with you, see rainbows, smell the flowers, walk the gardens, see the trees ...

    But most of all I promise to give you 1000 kisses without you saying "yuck yuck" 😂 and show you how much your inspiration, courageousness and determination has shaped my heart. ❤️ 🌈

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  • Sunday 13th March

      13 March 2022

    Mason has been pretty good since his surgery on Wednesday, he has bounced back pretty well, there is nothing keeping this boy down, he was a little up and down the first couple of days but got back to his normal naughty self no time flat haha. We saw him really looking in the mirror a day or two after, which was a little sad, he knew he had sore sore eye, but that's ok. He has been pretty good to not rub it, seeing as no patch was on and there are a couple of little stitches to keep it closed that will dissolve over the coming days, so he has done pretty well, we had to really watch him but I think he knew. He has been on pamol and ibuprofen for pain relief and has a course of antibiotics. Sometimes I look at his eye and feel sadness for sure and obviously wish none of this happened to him of course, but in other ways it is what makes him him now also, which is our little fighter and the most gorgeous, cheeky, resilient little boy that just still charms and breaks hearts wherever he goes :) :) !! The lovely people here at Ronald McDonald house tell us everyday how happy Mason makes them feel, yelling out the window HI, HI ,HI and telling them truck, digger, plane or helicopter HAHAHAHA, they absolutely love how happy they have seen him.

    We see the surgeon on Tuesday and with the go ahead we get to go home for a week, I know he will be so happy to be home and see all his toys and just relax in his own environment. We have been feeling a little pent up here as we haven't wanted to take him far at all, some walks in the pushchair and over to the domain, short bus rides (buses he loves loves loves), but just around close so I know we will be happy to be home. We will be back after that week at home to discuss the results from the testing and histology of the eye with the Oncologist and the way forward . So far the MRI we had already discussed with her and she was happy with that, no spread into the brain, and the spinal tap results we got 2 days after his surgery and that was clear too as in that shows no particles of the tumour are in his spinal fluid, which was a huge weight of the shoulders to say the least!! Now it hinges on any spread through the optic nerve which the eye testing and histology will show. Also we hope to found out some more on when he can be fitted with his prosthetic eye and the procedure with all that. We are extremely grateful for all of our lovely messages of support and generosity, and all our family and friends, Mason is so lucky to have some really special people and family in his life, that love him dearly! <3

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  • Wednesday 9th March

      9 March 2022

    Mason had his surgery today to remove his eye and tumour. To say this was the toughest day of our lives is an understatement. I will make this update a quick one until tomorrow as it is hard to process today.

    Mason woke up at 5am, he has nil by mouth from 12pm. Mason's usual routine is wake up early, say GOOD MORNING! then demand his milkee, while he waits for his milkee he gets all set up in bed with his pillow and his blankets right tucked up under his neck (haha) he hates blankets on him any other times, gets his milkee and then may lay there and just have his milkee or watch TV for a short time. Last week he was nil by mouth for 2 morning's as he had to have general and tests both days, so I think he knew something was up as the milkee just wasn't coming.

    We had to be there early, by 7.15am, he went to surgery just after 9am, to watch him go was just heartbreaking! He was in surgery for about 2.5 hours, came up from recovery about 1.30pm. He was very grumpy, he had a big eye patch on but he hated it and about an hour in he ripped it right off (he was too quick), so his eye is exposed as he just will not let them near him and he was getting distressed, the toughest day like no other seeing this. Very confronting to see him like this, as we thought it would be patched for at least 24 - 36 hours which may have given us time, but we will adjust.... its just time :(

    He has going between being very very grumpy to a being ok from the time he come up until about 5pm when he went back to sleep, and still asleep through to when I started writing this around 8pm. Next pain relief at 9pm and antiseptic cream, and hopefully a gauge pad or something on his eye, as having it exposed opens it up to risk of infection :( :( Also we hope he doesn't just rub his eye too much and catch any stitches or anything and be back in surgery, the next couple of days we will watch him so close and give him love love love and cuddles cuddles cuddles. <3

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  • Good Job

      9 March 2022

    Lyrics

    "you're the engine that makes all things go

    And you're always in disguise, my hero

    I see your light in the dark

    Smile in my face when we all know it's hard

    There's no way to ever pay you back

    Bless your heart, know I love you for that

    Honest and selfless

    I don't know if this helps it but

    Good Job

    You're doing a good job, a good job

    You're doing a good job"

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  • Tuesday 8th March

      8 March 2022

    Today Mason had all his pre-op appointments. The eye surgeon explained to us how the procedure will go. The will take the eye and put in the implant and some form of tissue from a donor who chooses this for when they pass away.. Today was confronting, and as it gets closer I am so sad for my lil toodee (Mason) but also know it is best to remove this cancer. Surgeon has said they will then test the eye and check the histology and this may take 2 weeks. Also results from spinal tap are still due. They will need the results from the eye (check for any spread through to the optic nerve) and spinal tap results still for the way forward. We were told today there could be delay for his prosthetic eye which was a shock for us also. Some cases are taking a year so it's concerning as he is growing and we would prefer not too wait too long because of this reason but what can we do, surgeon said she will push for Mason , so that's all we can do is hope sooner rather than later. Tomorrow we don't want it to come but we do, so trying to navigate that is real tough, but we will face this and be strong! We have been overwhelmed with all the support and generosity, thank you all so much 💕

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