Wednesday, 13 March 2013

13.3.13

Harry's been swimming! With his tube out of his nose and his neutrophils rising, Harry was able to go swimming, the first time since sept 2011, when we had to abandon his swimming lessons after only 3, as he became so poorly.
A major event and one Harry was soooo excited about! I took him to Brittania Hotel pool where I am a member, where the changing rooms are warm and the water is too. Callum came too, daddy was working unfortunately so couldn't see how brilliant Harry was. He was so determined to swim. I wasn't sure if he would remember how to swim, but he was fine. Not that he can swim properly, but he managed to swim in the same fashion he did in sept, 2011! He really wanted to swim without his armbands and so tried, but quickly sank and went under the water! Harry was actually very good about getting his whole head wet, something he would have cried about in sept 2011. He seems to have such determination, well when battling cancer it's the main vital ingredient to get one through! Harry refused to put his armbands back on, but mainly used a woggle float under both arms to keep him buoyant, or a float held in Front of him. I had to stay next to him like a hawk as if he let go, he would sink! Being a private hotel pool, there is no life guard! Callum loved having Harry in the pool with him and we spent 1 1/2 hours in the water. Can't wait to go to centre parks now in May and neither can the boys!
Harry had his bone marrow test on march 4 th, this went ok, thankfully, results pending. He has then had his hearing, echo and kidney tests on Monday this week. His hearing thankfully seems ok, the echo results so far indicate that his heart is functioning ok too. We await the kidney test results. Harry also had an MRI scan yesterday to make sure his abdomen is clear of cancerous tumours. Harry had to lay still for 50 mins whilst the pictures were taken. He could watch a DVD via wearing goggles during the process. This piece of kit cost £40 000, it was worth every penny as Harry was soooo good and still. The only problem was he struggled to hold his breath and not breath through his nose, whilst some final pictures were being taken of his abdomen. It may mean the pictures are not good enough and if another MRI is needed then he'll have to have a GA and during this apparently they can control his breathing to enable clearer pictures to be taken. Fingers crossed they are ok. At present my nerves are nearly shattered. During the MRI I sat behind Harry's head, so while he was watching fireman Sam and obviously I am glad he is oblivious to worrying about the what if's, but I am praying for the outcome to be positive. I was given 2 'woman's own' magazines to read, but found it hard to read the celebrity rubbish written about such trivial matters, when my son is before me having such tests to ensure he has conquered one of the most aggressive types of cancer there is.
Harry was due to have his MIBG scan today and tomorrow, but the nuclear dye is still somewhere in France! So that's been rescheduled to next week. At least I was informed yesterday afternoon, so I could get Harry into school today for 9 am! I do struggle when appointments are rescheduled as you are fired up about them, but nothing we can do to change it.
Harry has experienced pain in his right leg twice this week. Once on Monday whilst walking around the lengthy corridors for Harry's various appointments and at school today. Harry's teacher rang us to inform us that Harry was quite distressed by the pain, but it eventually went and he enjoyed the afternoon at school. We pray so very much, that the pain is not due to tumours growing in his leg. He has been so very well in recent weeks. We deserve a break from all of this and frivolous fun. Only the scans will give us real answers, so they can't happen soon enough. Intermittent pain in Harry's legs was the initial signs of all of this starting in 2011.
Now onto a couple of positives though! My meeting with the lead nurse on oncology seemed to go well. I thought the meeting was beneficial to both of us. I got to air my thoughts on the lack of support available to parents throughout treatment and I was able to be quite constructive in my feedback. There are some new roles on the horizon that could improve support, so fingers crossed they come to fruition. Plus, weekly coffee mornings are going to be set up, with a topic to be discussed from a speaker first.
This will give a focus to meetings and allow parents to have a coffee with each other away from their children. With the new Pavillion building hoping to be ready by the end of May, which will be situated just outside ward 31, this should provide a great venue for meetings to take place, so parents are never far from their children. We also discussed how more support from social workers would be beneficial, such as reassessments of family's situations half way through treatment, particularly if the treatment protocol lasts months like ours. I thought a few weeks prior to an extended period in hospital would be a good time to reassess a family's situation and support network, so if needed additional services of support could have been sought, in readiness for high dose chemo or a bone marrow transplant. We would have certainly appreciated this, as it would have helped get us the CAF meeting finalised prior to Harry's high dose chemo, instead of when he had finished! It was from this meeting that we got assigned a lovely worker from the sitting service and a CLIC Sargent volunteer, these 2 ladies supported us well throughout the remainder of Harry's treatment.
I also have to add here how my fight to get Harry continuing health care awarded back in sept 2012, was very worth it, as the department of continuing care in Leeds as a result recognise the fluctuating complexity of oncology patients. My Mcmillan nurse told me another patient has been awarded this funding recently, only for 2 months, but a breakthrough from the negativity I received back in August! A big positive!

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

    cameronvsj(at)gmail.com

    ReplyDelete