All is well, we have been staying in the Ronald Macdonald house for a week as Jamie needs to be at the hospital for 7.00am everyday for 2 1/2 weeks for radiotherapy!! He has had 5 out of 12 sessions and is put under general anaesthesia each time, bless him. The staff here are truly wonderful and one of the recovery nurses made us choc brownies for breakfast. Not very healthy but needed with the early get ups!!!
On Friday night Jamie was talking about his plans for the next day and said "We have to get up early for radio Robbie" [radiotherapy]. When he realised that we weren't going on a Saturday morning he got very upset!
We have met the two other families from the UK here for antibody treatment. Both have already started and have warned us that the first round is pretty traumatic but it gets better. I can not begin to explain how great it is to be with these families. It has made me realise that I am not going mad, this is in fact how other families are also having to cope with this thing. This certainly is no picnic in the park.
The level of care and attention to detail, holistically for each family is something we are not used to but this is what they do!! We have had training to flush the lines and will be having training to administer the injections :(. No way out of that one!! They also delivered a whole months supply of plasters, swabs, wipes, heparin flushes etc and phoned us the first weekend to make sure we were ok with the flushing and if we needed anyone to come over!
JAMIE HAS BEEN BRILLIANT HERE!! He has changed so much. He is healthy, putting on weight, hair is coming back on head and he has had eyelashes and eyebrows for a while. Best of all, he is eating well and ENJOYING LIFE!! He laughs and runs around, interacts with all the children and is a totally different boy, Becoming almost like my old Jamie. His behaviour has improved 10 fold. Jamie is thriving on this unusual situation that we have been forced into. He said that he doesn't want to go back to Germany!! After round 1 of antibodies I don't think he'll be saying that though!!!
All the staff have taken Jamie under their wing and adore him!! He is lapping all the attention!!
So last week was quite uneventful really except for Sunday when Jamie was in a lot of pain. One of his medicines had run out [he only has it when he has pain in the tummy area] and after using it up on Saturday night things still were not better on Sunday. We had to make a mad trip to New Jersey [30 mins away] where the new bottle of medicine was so within a few hours of taking this, the pain stoppped.
All I can say is thank goodness we were fortunate enough to have a hire car to go and get the medicine because otherwise we would have had to have paid for it!
Once Jamie was better, a friend had invited us to his appartment in central Philli to meet his family. His local Church community have been following Jamie's appeal before we arrived and wanted to see Jamie so we were greeted by a large group of Indonesians who were thrilled to meet Jamie and Poppy. Thanks Lindy, we enjoyed your hospitality and lovely meal.
This week the radiotherapy continues and then the diagnostics will begin prior to Immunotherapy treatment. These diagnostics are always an unpleasant and worrying time for everyone but we will let you know how Jamie gets on.
We have been here for 3 weeks now and it still seems strange that after a frantic time of fundraising and getting through high dose, we are actually here.
Please think about Jamie on 1st April as this marks the 1st anniversary since diagnosis. What a day that was but a year later, we have hope.
Thanks for reading this and Happy Easter to everyone!
The Inglis Family
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