Wednesday, 22 January 2014


What a roller coaster so far this week and its only Wednesday!
Harry had a CT scan yesterday followed by radiotherapy in the afternoon. 
I have had many gripes previously about the service and level of communication in oncology at Lgi, but this episode has been dealt with so quickly and professionally that we can see that it is possible to achieve a high standard of care and delivery of service!
It was great that we got to see so many familiar faces amongst the staff and this made us feel more at ease and our stay more bearable!
We were allocated a health care assistant to come with us and stay with us for the 6 hours that we were at Jimmy's yesterday! Harry had loads of attention, particularly as there was a Playworker in radiotherapy all day too! 
Harry decided to start making a cardboard airport, whilst at Jimmy's and continued on this theme once back at Lgi. The play workers on ward 31 found card board boxes and bottles for his project and Harry was able to discuss his project with 2 other children there too! 
This enabled me to have discussions with nurses and doctors and get things fixed out for us to transfer to Martin House Hospice. 
We arrived at Martin House Hospice at 7.45 pm last night. Our McMillan nurse was here on our arrival and so was one of the oncology consultants. This  created great continuity from Lgi.
Martin House had saved tea for us and I was presented with sausage casserole and a plateful of homemade cakes!
Yesterday was an incredible long day. Harry was up around 7 am at Lgi and was quickly wanting to make his lego truck that he got for Christmas, he was them busy creating his airport all day and on arrival at Martin House was pleased to see that some toys and stuff for junk modelling had been placed in his room. 
After wobbling his loose tooth a bit more, this finally come out, he's list 6 teeth in total now! He was really chuffed that this tooth that had been annoying him all day had come out and he went to sleep dreaming of the arrival of the tooth fairy!
Harry has had a settled day today. We have managed to get on top of his pain, which makes a massive difference. Harry has calmed down and despite being unable to walk, he has had a smile, been very bossy, but has been our Harry today!
He has continued with his airport, creating an air traffic control tower and a fuel tank truck! He has been in the music room, playing the drum kit to 'born in the USA' by Bruce Springsteen and he has had a bath! The bath was a big thing as to get Harry in, we had to coax him into being hoisted, using a sling to support him. The staff were brilliant with him and got giant syringes to use as water pistols. Harry had a great aim and managed to wet one of the care staff despite the fact she was wearing a plastic apron! 
Harry remains paralysed from the waist down. It could take a couple of weeks to see if the radiotherapy has shrunk the tumour, and thus released pressure on Harry's spine, to then enable him to walk again. 
Harry understands that cells have squashed nerves in his spine, preventing messages getting from his brain to his legs, that tell them to walk. I explained to him that his spinal chord was like a hose pipe, that as with a hose pipe when it gets squashed, water doesn't come out, as is the case with his spinal chord, but instead of water, the messages are blocked. 
Today has been about ensuring we are on the radar of the professionals needed to be involved with our lives to get the right equipment and services to support us to manage Harry back at home. 
In my role at Airedale Hospital, I was the co-ordinate of services to facilitate a discharge home and so I am finding it difficult not being in control of this and relying on others to ensure the right people are contacted.
We are ok at present as we have had support from hospital and now Nartin House, but next week will be testing as we try to get Harry to school, manage Callum and Paul starts back at work! 
It is then that I will cashing in the offers if help and support!
We would like to thank everyone for their kind messages, these spur us on!
We are hoping to get to centre parcs for the final night tomorrow! Daddy and Callum are there already with our friends. We are hoping to get Harry into the pool, and have thought of how to clamp his catheter pipe to enable us to do this! The show must go on, despite all the twists and turns and challenges! The force will be with us and somehow we continue to move on from this set back!

Here are some photos of Harry with his creations and having a rest from drumming! 

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