Anika had a nice sleepover at Grandma's last night and a trim at the hair dressers this morning. Anika and I had a good morning at Tumble Jam (play centre) with the mums from "My Time" - a group of parents to kids with disabilities or chronic illnesses) and she spent most of the time fighting with Jas, as they normally do!
Later we had a visit from Granny who brought lots of yummy stuff for lunch, Tammy to drop off photos and Laura, Laughton, Ty and Jas which was fun if a little hectic. It was especially good to see Laught and Ty as we don't see them as often as the girls and Josh gets a real kick out of seeing them. Ty is amazing with his language and caring attitude to Josh. Josh had a great time yelling at Laughton "Fe fi fo fum, stick your finger up your bum!" and giggling his head off.
It looks as though there is a large patch of tumour in Josh's back as a very painful lump came up yesterday morning with blisters which burst. In theory he now has a neuroblastoma skin cancer too. There are new lumps on his neck today to give you an idea of how quickly this disease spreads. They were not there yesterday. The Fentanyl is now up to 275mcgm which is a hefty dose for a little one but he really needs it now. He still sits up occasionally and eats here and there but is having trouble with his emotions and gets a bit confused partially due to his "good ear" being blocked by tumour and also due to the huge dose of painkillers he is on.
We still get told constantly how much he loves all of us and Joshy's looking forward to seeing his Uncle Danny over the weekend, they have a truly special relationship. Josh is fighting long and hard but now we pray for relief for him from his suffering and happy travels when it is time. He has given everyone so much joy that heaven will be a far more beautiful place when he arrives there.
Love,
Hannah
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