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!

 

 

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.

http://scienceblog.cancerresearchuk.org/2013/03/12/the-cost-of-surviving-cancer-a-parents-view/

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!

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!

1.3.13 pictures!

Treatment really has finished! 28.2.13

Well on Monday 18 th Feb Harry took his very last retonoic acid tablet. It was just the same old ritual as usual. Harry crunching each of his 4 tablets with a spoonful of yogurt, sucking the retonoic acid bit out and then spitting the shell out afterwards! We acknowledged that it was the last tablet, but nothing eventful! I must admit I did feel quite emotional afterwards. Mainly because, that is it. Harry's cancer has been targeted with all we can give it, to be blasted away forever. No more fighting. We have to sit and wait and hope it never returns. It seems odd not to be fighting cancer anymore and it feels the safety net of treatment has gone. We are on our own now. No more toxic chemicals for Harry.
We now live in a parallel of hope and fear. Hope that Harry has the life he deserves and fear that his cancer returns. It could return in weeks, months, years, maybe never. Nobody really knows what side effects the many rounds of toxic fuelled infusions that Harry has endured, may present in the future.
I don't dwell on the fears all day every day. It's not like that. Some days are really good, others the fear settles in, perhaps a flash back occurs from thinking about treatment or when Harry was diagnosed and the feelings of utter despair become all too memorable!
It's certainly not a case of treatment finishing and you just crack on with the rest of your lives. For one thing Harry has retests. When its retest time, well cancer cannot be forgotten, it is staring you in the face; the invasive tests needed to ensure that Harry's body remains clear of cancer. He is doing really well, on fine form, but he seemed to be in August 2011, yet if he'd been scanned then, cancer would have been evident.
Therefore I admit, I get irritated when people assume he is ok, because he is well. We really don't know if those pesky cancer cells are back.
I am not being negative, but realistic. I am being as any other parent would be facing what we have had to and with the knowledge that relapse is high, meaning complacency just isn't an option.
In my heart of hearts I feel Harry is ok, we will celebrate the results and enjoy life, but I do know when the next round of tests are upon us, then all the feelings I have now of uncertainty will return. I guess that is our lives now, enjoying life, but there is a shadow of doubt that creeps in and this will grow at retest time.
I read an article this week about post traumatic syndrome effecting most parents of children with cancet and it went on to describe parents as 'the invisible patient'. I agree with this and whole heartedly feel that parents are left to just cope as best they can and whether they fall apart or not depends firstly on their deposition to life already, their strength of character, their support network and their existing other dependents at time of treatment needing attention too. The list could go on. Some people find an inner strength they never knew they had, others just manage to function on autopilot, not really being able to take in the reality of events.
I would say I am a strong character already, with a reasonable sunny disposition and positivity. I am willing to battle to get the best solution and have done many a time. I hate injustice, but with this will to battle and be the rock, does come exhaustion.
I have enjoyed not being at work recently and having a bit of time to find myself again, find me, not just be the carer. To think about what I want from life, to think about the possibilities out there. To think about where I want my life to go. We will see.
I have a meeting next week with someone from LGI as they are reviewing support provided to parents during treatment. I have emailed some thoughts already and hope I can provide real awareness of how support services could be shaped.
I did have one session of 'life coaching' that uses CBT to underpin its techniques to help you move on and cope with life. I sit on the fence as to how useful it was. Possible it was too early to be of use, Harry had not completed his antibody treatment and so I still had my armour on, ready for battle and so the mask was still there. I wondered whether counselling would be more beneficial than 'life coaching' but to be honest, to tell another stranger our journey again, takes time. With the 'life coaching' lady I got as far as discussing Harry's radiotherapy and she commented that we had been through it, thinking that was it, but I was quick to add, that there was still a lot more of the journey to add - the problems after radiotherapy, the retonoic acid tablets, the antibody treatment and the countless platelet and red blood transfusions that followed!
I think at present to give up 3 hours for the journey and counselling, well I'd rather chill at the gym and have a swim, jucuzzi and sauna. I've been having a couple of free trials at gyms. I tried one yesterday with a lovely swimming pool that is a great price and with no annual tie in I can pay monthly. The swimming pool was quiet and would be great to take Harry to, to get him back into swimming again. So I feel at present, relaxing, exercise, meeting people up and getting involved with trying to improve support for parents is enough for me for now.

It was half term holidays last week and Harry had a great time. On Monday he loved galavanting around the Yorkshire Ice cream parlour with his friends. On Tuesday Harry was so excited! His old nursery, Esscroft in Burley in Wharfdale, put on a party in the afternoon. This was to celebrate the opening of The Pavilion, a new indoor play area and to celebrate Harry finishing treatment. Harry unveiled a plaque dedicated to him, it has a tractor engraved in the stone and the words 'it's all good Harry'. Harry also cut the ribbon to open The Pavilion and declared it open upon doing so. Then there was 3 hours of entertainment from 'Uncle Brian' including a puppet show, Harry had chosen 'the 3 billy goats gruff' as the story; a magic show and a disco. The refreshments were all served from the new kitchen too! Harry and Callum had a fantastic afternoon with their friends. Esscroft is such a fabulous nursery with a family atmosphere, Callum still has 18 months there before school starts for him. The facilities and grounds can't be beaten either!
We headed north on Wednesday, to Scotland and stayed with 2 different sets of friends, the Dransfields first, then The Butlers. We managed to get onto Ayr beach on Thurs, all wrapped up and the boys made a sand road with buckets and spades with their gloves on! There is a brilliant park there too, which entertained the boys for ages!
Mummy had a girls lunch out in Glasgow on Friday, with some shopping too. I even had a make over from the Yves Saint Laurent counter in House of Fraser. I was looking for a new eyeshadow, then next I seemed to be having a full make over. Think the assistant was appalled at my lack of skin care as she asked, "when was the last time I had, had anything done to my face?!". I asked what she meant and she said "any colour matching!" If I hadn't of been so up for the make over I would have walked. She did a good job though, just a shame all the products would wipe my bank account out for the month!
Paul got to have a night out in Glasgow and Hamilton too! So having burnt the candle late into the evenings, the boys ensured we burnt it at the other end too, yep, up at the first sign of dawn; we were ready for our own beds once home and the boys once again in their own rooms, more settled nights were very welcome!
I realise that work looms on the horizon and so with this I need to start getting Harry into school for 9 am. So on Wednesday he went at 9 am. It was brilliant getting both boys out of the house for a decent time, before they could get all the toys out and rearrange the house! More 9 am starts planned for next week!
Today, Harry should have had his bone marrow aspirate, to see if his bone marrow remains clear of cancer cells and a small piece of bone taken out for testing too. However, it's been rescheduled for Monday. The community nurse was organised to come yesterday to take Harry's bloods in preparation for today. I rang the ward at 4 pm yesterday to check where we needed to go for the procedure, no mention of it not happening, until I rang the ward today, to check Harry's blood results, in case any blood products were needed and an earlier time of arrival to be planned. I spoke to the perplexed ward manager who said Harry wasn't on today's list and seemed to act like I should know it was Monday. I wondered if I was going mad for a minute, getting muddled with my dates. However, I pushed the subject and said it was definately scheduled for today, the community nurse had only arranged her visit on Monday for Thurs, at the hospitals request, in prep for today. The ward manager said the list was made yesterday and he's down for Monday. Having got Harry to have his breakfast early in preparation for fasting for the anaesthetic I was furious. I know lists can change, but they could have told us last night. Also they would have had us turning up at LGI if I hadn't phoned, for a wasted journey! Then they really would have had to deal with a melt down! Harry was brilliant though about the
change in plan and went to school mid morning. Wish I could adapt as well as he does. All the feelings of the previous cock ups sprang to mind and I felt the flashbacks start and I couldn't shake myself out of feeling furious, uncared for, just another number in the system!
Well one areas where support can be improved is better communication links! Sometimes it feels there is none and this is an alien word to them! Even Harry said in the car later today that the hospital make it hard for us! He decided that he will become the rule maker and the rules will not be broken!

I will end on a positive though. Harry's NG tube has been getting blocked over the last week. The tubes only have about an 8 week lifespan, So the plan was to get it changed today, however the pressure of another blockage at 3 am last night, whilst Harry's feed was on, caused the tube to become disconnected from its connector, leaving it useless and leaking! Therefore, with Harry's agreement I pulled the tube out. On discussion this morning, he refused to have another put in. He therefore has agreed to take all his medicines orally. He's been building up to doing this,taking 2 orally already, but magnesium doesn't taste nice and thus went down his tube. He managed to take this though, mixed with yoghurt, so this will be our new ritual 3 x day! Well done Harry! His appetite has been increasing and suddenly his drinking is too, not on the red wine like his mum, I hasten to add!
We will monitor his weight to ensure this doesn't drop too much and if it does we will discuss having the NG tube re instated! For now though its bye bye tube and hello handsome Harry, with his head of hair and no tube!

11.2.13 post antibody treatment!

Well Harry had no side effects from his final antobody treatment, which was brilliant. It meant he could be discharged Friday eve, when his antibody infusion finished. We did question this though, since following the end of his previous antibody treatment, the nurse assigned to Harry wanted to give him 24 hours of hydration, usually he has 12 hours hydration. The protocol was checked and it was agreed he could go home following 12 hours of hydration. This time we were being told that he needed none! It didn't make sense and seeing as we have seen 'cock ups' we wanted things double checked. The outcome was that since Harry had been drinking and  had no side effects from treatment, he could go home and have a full bag of overnight feed, which would continue to hydrate him, coupled with him drinking fluids orally. As usual though, the antibody treatment was not commenced as early as it should have been, this meant Harry finished his infusion just as a new shift started. This of course, caused delays. The computer system was down that day and so no printout dischage summary could be provided detailing what medicines Harry should take home. The nurse on the new shift was told by the nurse leaving the day shift, everything was present and correct. I'd left Paul with Harry, which enabled me to get Callum tucked up into bed, before Harry got home. It was 10pm when Harry was discharged and on arrival home he had most of his medicines missing! Since I am organisedd, luckily i always have a spare in stock. Harry particularly needed tablets to start on Monday, which we had none of. As those who know me can imagine, I blew my top with the hospital! Partly beacuse having Harry home, was suppossed to be a time of celebration, not chasing medicines. I felt I should have made sure everthing was organised when I left the hospital at 4pm, but I thought I'd trust the fact that we had been told that all Harry's take home medicines were as they should be waiting for him!
On the Saturday I pursue the matter, unfortuately it cannot be resolved until the Monday when a solid tumour consultant and an oncology pharmacist will be on duty!
I park the issue though, and enjoy the weekend, being reunited as a family again. Paul had the weekend off work and so we had a gathering at The social club we go to and have a toast to mark the end of antobody treament. On the Sunday we had a family lunch with both sets of grandparents. Harry is on amazing form and Callum is enjoying having his brother home.
Harry has been in school, just for the afternoon on Monday. The school had a day off wednesday for staff training, but the other 3 days he attended 10.30 - 3.15.
On Harry's day off, we met with a family wo have just moved to Otley in the morning, then went to Harlow Carr in the afternoon, with El, Natalie and Michael. It was very cold, but the children loved getting out and running about and getting wet and muddy in the puddles! Boys will be boys! I have a memebership card for Harlow Carr now. I had never beem until January, but think it is a great place! Its a Royal Horticultural Garden, with some great play areas for the children. I can't wait for the warmer waether and to have picnics there.
On the Thursday it was my birthday. Last year on my birthday Paul took Harry to LGI for invasive tests to see if his cancer had gone after his initial chemo. I had a hairdressers appointmnet, but for most of the day was fighting back tears, the fact Harry was undergoing invasive tests again, the unknown of where we stood with Harry's cancer, it was overwelming. Well the difference a year makes. This year, Harry went to school, Callum to nursery, Paul had booked annual leave and so we had a few hours child free! This enabled us to have a lovely walk and lunch together! Then I had a birthday tea with all my boys and my parents too! Harry and Callum were so excited about my birthday too. It was a great day!
I am getting used to our new pace of life, which is becoming as it used to be, lots of giddyness from the boys, the need to get them outdoors, particularly when daddy is on nights as he has been this last weekend. The boys are enjoying their scooters and becoming fast on them. Callum is like a kamikaze pilot, flying around, then catupulting in the air, landing with a big smile on his face!
We went to Otley park on Saturday and met up with Janey and her dog, The boys love Issachar - the dog. They loved following her into the stream, paddling, then getting very muddy and taking half the water intended for the river away in their wellies! Reminds me of my childhood days! One washing load later and a bath for the boys, all cleanliness was restored!
Well we have some tests dates, not all of them yet, but spread out well into march, so I guess we won't get the finla results till the end of that month. A while yet before we can be sure Harry is for now in the clear, not just of cancer, but in the clear of having anything malfunction as a result of all the drugs Harry has had to endure.
My mind is reflecting and thinking like mad at times of the last year. Often I park these thoughts and am enjoying having space for some long overdue me time. HOwever, end of treatment is a strange time, whereby emotions rock backwards and forwards, between being positive about the future, making plans, to fearing relapse, to reliving some of the events of the last 15 months and being angry about parts of Harry's treatement, believing things could have been dealt with in a much more senstive mannor. I may compile some letters, detailing how I think some parts really could have been managed better, some days I feel very strongly and others I park my issues! I have joined a Facebook group though that is looking at how end of treatment support coud be improved. I also have many thoughts on how more support could have been provided during our treatment and have emailed my thoughts to someone I hope can follow some ideas through. I know budgets are cut, staffing reduced, producing and managing any new initiatives is a big ask, but I know myself and some others would offer free input. So we will see. I am forever the social worker!!!!!!