A quick update!

This is just a really brief update as I am busy packing for the next chapter!!!


Jamie has recovered ok from the shingles - the scabs are still there and Jamie keeps trying to pick them. Our success with the accutane was shortlived as Jamie decided when back at home that he didn't want to swallow them. He has come up with a way of taking them which means that each capsule sits in the side of his mouth for at least 15 mins to get it all soft. Multiply this by 3 capsules twice a day and you can see how our time is taken up!! Ohh and lets throw in the mega mood swings and tantrums for good measure which start the moment he wakes up. We get a break of 10 -15 minutes between each outburst so this week has been so challenging. For the first time in all of this, I woke up one morning to the screaming and just wanted to hide! Things will improve :)

Anyway, well done Jamie as the accutane is definately going in. One of the side effects of oral chemo is dry lips and dry skin. He has that all over his face and bottom, bless him. He is shedding his skin like a snake but I am just happy to see this as it means he is getting the dosage!

John has been doing the walk of shame around the estate on bulk rubbish days!! The stuff people throw out because they can't be bothered to clean it etc..or because the bar b que is only a coal one!!!!!! So, I've nicknamed John Steptoe and Son and we have had a laugh about that!!!! We have also found a thrift shop, recomended to us which has loads of furniture. I picked up a wooden cabinet for the living room for $19.00!!!!

Although we have been at the house this week in Bucks County, we haven't really done much because of Jamie's mood swings. We took him to the park one evening and have been out for walks. The weather here has got much colder again. We went from having the air con on in the house to putting the heating back on within 24 hours!!!!

We met a lovely family when out and about the other day in Target. They were really engaging with Jamie and Poppy and so we got talking. They went away and came back with a bag full of toys and a little outfit for Poppy and said that they would look up Jamie's appeal on the internet! They were so kind and their children were so polite. Thank you - Jamie has taken the snake everywhere!!!!!

We did have some concerns over Jamie's health when he came out of hospital but at the clinic, bloods were taken and everything is fine. So here we are getting ready to start round 2!!! OMG this is going so fast that I haven't had chance to compartmentalise all the stuff that has gone on since we arrived here. We are nervous again as round 2 is different. We start of for 4 days with the normal antibody [ch14.18] that he had in round 1. We then come out of hospital for 2 days and go back in again for 5 days [I think] where Jamie will receive a combination of antibody with a hormone called IL2. These when mixed together make this a particularly difficult round with the pain issue. Having seen and dealt with Jamie during his extreme pain with the shingles [horrific] I think we are ready now for what could be around the corner. In true Jamie style he says "I'm going in for more treatment at CHOP to stop the baby blastoma cells growing!!"

Jamie is trying new foods, we are having a real push on nutrition at the moment and really encouraging him. Jamie even asked "If you eat lots of good foods like vegetables and potatoes and spinach will it help me get better??!!"

We are in awe of how knowledgeable Jamie is ~ I was worrying about him starting school and having to go back a year ~ maybe he doesn't need to!! He might find it better to be with children of his own age.

I think the highlight for Jamie this week has been seeing his Nanny and Grandad on Skype!! They arranged to use the computer at my sister's house and he was chatting away to them!! Poppy even took her first small tentative steps on Skype with Daddy holding her!!! She also has her first tooth so life carries on doesn't it?

Ok off now to continue packing and to take Jamie to his surprise for all the hard work in taking his medication ~ the Zoo. We have been given free tickets so know that Jamie is going to have a wonderful time there!!

Thank you for reading!!