Keep Jamie Smiling

The beginning of the end!

A very quick entry as we have to finish packing for the hospital! We have had a great week with Jamie and stayed in Amish country. Jamie had a wonderful time on the working Amish farm and milked the cows and fed the calves!! I will do a proper entry on this later.

So this week is the ultimate week!!!!!! On Monday we were at CHOP all day, there was confusion with medication and they were not expecting us! Anyway, it all got sorted out. I was surprised that Jamie had not put on any weight during his break, he still only weighs 13.6kg but lets look at it the other way, he hasn't lost any!!

The staff were pleased with how well he is looking and his energy!! We are going to send Jamie to Uncle Tim's school of fencing in Australia as we have to engage in sword fights every day! Great exercise for all of us but at 10.30pm we have had enough!!! Jamie's body clock is all over the place and we spoke to another family who have said the same thing.

I can't believe the difference in Jamie this past week. It goes to show how much the treatment does affect them, even after it's finished. This has been a long break from treatment and Jamie has been brilliant!! His behaviour is amazing, he is willing to listen and take on board what we are saying to him [sounds like Jamie's end of year report!!] and he has taken his antibiotics with no problem! We welcomed the Rogers family to our house last Friday as they too were back for final treatment and scans. We were so pleased to hear their good news and hope that Jamie will be the third one to get the all clear, alongside Robyn and Stella!! We had a wonderful day with the Rogers and over a cup of tea and small glass of wine, put the Neuroblastoma world to rights! We are all ready to continue the fight for awareness, research and access to the best treatment!!!

Jamie played so nicely with their children and to see them all at the end of the day in the living room, with cushions from the sofa on the floor, in front of the Lion King, snuggling up, was just great!!!!

Back to Monday.... the final round of antibodies has started with the GMCSF injections. This stimulates the white blood cells and is always given prior and during ch14.18. I say it is the final round but it is in terms of inpatient stay. Round 6 will be completed at home in Germany, the ever so popular accutane!!!! I will put a warning sign on our door before people visit - aggressive behaviour!!!!!!

Our delivery of the GMCSF arrived at 11.00pm Monday night after many phone calls but at least Jamie had the first dose in  CHOP that day! Jamie has been so brave whilst Mummy administers the sharp medicine!! I hate it too but at least now I don't shake like I did in the beginning!!!! I truly would not make a good nurse!!!

I have had to be ultra organised to make sure that Jamie's birthday gifts and cake stuff are also ready to take as we will be celebrating the birthday at the RM House!!!

We can't believe that today we are being admitted for the final inpatient stay. It's exciting and anxious and Jamie is very excited too!! I am already emotional so goodness knows what state we will all be in on Monday and Tuesday next week!!

I have one thing to ask of everybody reading this...we all know that Jamie's favourite song is Greatest Day by Take That. He said to me the other day "Why don't they ever play my song over here like in Germany?!" It's true, it is never played here soooooo....to recognise Jamie's achievements and courage please could everyone listen to that track on Monday 16th August and spend a few minutes thinking about Jamie and all the wonderful children who are fighting their battles and WINNING with cancer!!!!  Please could Minster FM in York play it and Gini Carlin on BFBS radio!!! I've set myself off again now so I am signing off now!

Good luck to Jamie as he embarks on his final journey with this fight!! You can do  it my beautiful boy!!!!! Go, go, go!!!!!