Hi Everyone and welcome to our journal!!!
As I am sure you have already read in our story, our little boy Joshua has been treated for the past year for Stage IV Neuroblastoma.
What you probably don't know is how energetic, loving and inspirational our boy is!
Currently undergoing Roaccutane therapy to prevent the tumour growing back (it is the drug used to treat adolescent acne), Josh is suffering quite a few side effects at the moment. This week is his last in the cycle of two weeks on, two weeks off with one more cycle to complete (woo hoo!!!).
The side effects seem to differ with each cycle...Cycle 1; cracked lips and night terrors, Cycle 2 cracked and bleeding chin and bad temper tantrums and sleeplessness, Cycle 3 whole face cracked, bleeding and hurting with emotional outbursts, Cycle 4 I upped the dose of internal Vitamin E and started applying it topically which helped the cracked skin but it still happened on the chin and arms and legs, lashing out at sister and us, Cycle 5 Blood noses and peeling everywhere I couldn't apply Vitamin E (in ears, on scalp), still awful mood swings but sleeping well, Cycle 6 very bad tantrums and uncontrollable lashing out again.
The good thing is that whilst his blood counts go down a bit when on the treatments, they recover well afterwards with one last month having everything in "Normal range" for a child his age! What a buzz!!! The other HUGE bonus is that he is able to be at home to have these drugs which he is relishing after living at Ronald McDonald House for almost a year. It is a fantastic place and we dearly miss everyone there but would we trade our home for our second home there? Not a chance!!!
We are all missing our hospital and RMH friends but still get to see a few of them when we go up. Josh is due for more scans within the next two weeks to check for the reoccurance of disease and is on three monthly scans at the moment. Believe it or not, the scans which he used to hate so much due to claustrophobia and having to be still for almost two hours or anaesthetised are now not an issue! All the work I did with him (with the help of the amazing nurses at Sir Charles Gardner Hospital) for the daily Radiation anaesthetics really paid off and he is now one cool customer in the scanning bed too!
I am hoping everything goes excellently not just for Josh but also for his special little friends Imogen, Blake and Rachael. They are very special little kids and if you get a chance, please have a look at Immie's blog by her mum Fiona (she is a scream) and Blake's page, what that little boy has been through is incredible but he is such a beautiful old soul.
Love and Rainbows,
Hannah
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