Sunday, 31 March 2013

Some recent photos, including Harry's scan, which highlighted the cancer hotspots.

Easter Day

Well Easter Day last year was on 8 th April and Harry was in LGI having chemotherapy to stimulate his stem cells production in readiness for harvesting his stem cells.
This year we should be celebrating having the rest of our lives ahead ofus, however as you know Harry's scan showed that he has 3 hotspots of cancer growing within him.
Despite frequently thinking and being aware of how high relapse is in Neuroblastoma cases, actually being faced with the knowledge that our child has relapsed is very different. The intensity of grief we felt last weekend is indescribable. We felt Harry had died already, yet he was still with us, smiling and able to have fun. So it felt like a parallel universe to be grieving for the anticipated loss of our son, but at the same time having our boys still laughing, fighting and happy!
We went to the Moscow State Circus last Sunday afternoon, this was an amazing performance, enjoyed by all 4 of us. To see Harry laugh and talk so much about it afterwards is priceless!
Callum was mesmerised and remained sat still between his seat and my lap, throughout, this does not often happen for Mr Rigglepants!
The circus gave us a boost and reminded us of the need to pack as many trips and fun times in as possible over the coming weeks/months.
Our mood has fluctuated incredibly and the evenings and the middle of the night thoughts can be the worst. Waking up in the morning is not fun either, as you open your eyes, feel good for a split second, but then remember, oh yes my son had been given a life sentence of cancer.
Harry has been to school this week and really enjoyed it. He is making his mark on the school community. He seems to frequently play games with year 2, pairing up with his new best bud Seth, whereby they seem to start games that encourage many year 2 boys to join in! Harry is a larger than life character and he has got his Mo Jo back after so much gruelling treatment. This is wonderful to witness, but at the same time tinged with sadness that his life expectancy will be so short. I feel he has the ability to be anything he wanted in life and would have made a great contribution to society.
Harry had his bloods taken on Wednesday to see what the scores on the doors were. Paul and I also went to visit Martin House hospice. We felt it is definately a resource that we will use. We can all stay there for respite care and the whole family is looked after, which we will need at some of the very stressful points as Harry will need his pain management controlled. He can also die there and it felt like the right place too for Harry to end his life as we will all be supported in the hours/ days following the biggest loss we will have had to endure yet. Yes, during Harry's treatment I did contemplate Harry dying. Every parent who has a child with cancer contemplates this st some point and mentally plans their funeral. Again I have mentally thought about Harry's funeral, this time acknowledging the reality of planning this.
With so many things to think about, we were actually relieved that Harry's bloods were too low thus week to have to make any decisions on whether we should be giving him any more chemotherapy to try and prevent the cancer spreading so quickly. Our brains hurt as it is. Though in all honesty Paul and I agree that Harry has been through enough toxic treatment and at present we agree enough is enough. We can't face the prospect of him having any more chemotherapy that will make him sick, lose his appetite, affect his bloods and lead to him needing more transfusions. The end result will be the same, there is no treatment as yet that will cure a relapsed Neuroblastoma cancer case.
This week Harry has had the odd cramp and twinge, but had remained well enough to fully participate in life.
Yesterday I took Harry and Callum swimming, then we went to Harlow Carr and met friends to complete their Easter trail. Harry was racing around with his friends, a joy to see. We ended the day by having tea at Gusto's Italian with our friend Janey. Harry was still full if it when we returned home at 7 pm and was keen to tell daddy who had been working all about our day.
Today we have been to church, had lunch with Granny and Grandad and then met Seth and Eli to fly planes on the field opposite my parents house. Whether its the chocolate or the fact Harry is high on life at the moment, well he remained giddy till he was in bed!
So long may the good times continue, we will treasure every moment.
You never know what tomorrow will bring, but you can make the most of today and make it count!
We have a starlight, make a wish granted and intend taking Harry to legoland. We will be organising this sooner rather than later to add to our bank of memories.

Saturday, 23 March 2013

Results! 23.3.13

We are completely devastated by the news Harry's results presented yesterday. There are no words to describe how much our hearts hurt. Basically Harry's MIBG bone scan has shown that Harry has Neuroblastoma cancer hotspots on his spine, hip and thigh. Basically his consultant thinks the cancer never went and there must have been microscopic cells still present, but they never showed up on his last scans last July. These hotspots will account for the recent pain he has had in his legs. His platelet levels are too low to fling him into any more treatment at present, but any more treatment will be of a palliative nature anyhow, there is no treatment that can cure him. Harry basically has a prediction of months to live. The priority is to keep his quality of life going for as long as possible and to create the best memories for us to treasure for the rest of our lives. We won't be telling Harry anything at present and we will try and continue as normally as we can. The hardest thing is keeping it together and putting that needed smile back on our faces for Harry and Callum's sake. The months ahead will be the hardest yet. Well to start with we have booked tickets for the circus on Sunday!
We will be meeting our consultant again in a couple of weeks. Harry's bloods will be monitored closely. If his platelets reach 75, they are currently 48, then we can try some chemotherapy tablets at home, to try and prolong Harry's life. There are other treatments available in London, that involve radioactive therapy, but currently we can't contemplate the thought of travelling up and down the country for treatment that probably won't make a great deal of difference. For now Harry is not at a point to be entered into any more treatment, so we will make the most of him being well and enjoying being a family.
We will link ourselves into Martin House hospice sooner rather than later and take advantage of their support services. We are very mindful of how Callum will be effected by the loss of his brother and so intend linking him into sibling support groups, though i know alot are aimed at age 5 plus, however even to link him in with other children who have lost their siblings may be beneficial. I guess for Callum, when his brother has gained his angel wings, he will be without his hero and so his friendship group will become vital to him! We also want to find out about support groups for grandparents too, as they will be greatly afffected too.
We don't want pity from people, but friendship and support. For our friends to be there and provide fun, hospitality and probably much vino!

Thursday, 14 March 2013

14.3.13 parents evening for Harry!

Just thought I'd add how well Harry is doing at school, I met with his teacher today and she can see such a massive difference to the boy that started school in sept for only a few hours a day. Harry got very tired easily then and tearful. He hated outdoor playtimes as he had not been used to outdoor play much over the preceding months.
However, he is is different boy to the one then, he is the Harry we used to know, socialble, gregarious, fun and determined. He is doing well in all areas of school and is on track with his learning.
Having missed a year of pre school prior to starting school, we have worked hard to ensure he hasn't been left behind. I am sure being a September baby has been a positive for him, as he is one of the eldest in the class. I also think the work Esscroft nursery did with him, particularly in the term before he was 4, meant he had already mastered the basics and we have built on that.
I also think that we have tried very hard to keep Harry socialising with others, mindful of his poor immune system and ensuring he mixed only with healthy children! Wherever possible we have kept normal life going and it is this which I believe has really helped Harry settle into school, adjust and make the progress that he has!

14.3.2013 - a link to an interesting article on surviving childhood cancer.

The link doesn't want to be directly accessed for some reason, but if cut and pasted into google, the article will then be available to read!

Wednesday, 13 March 2013


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!