Friday, 31 January 2014


Yesterday, felt like a very bad day. It commenced with a phone call from a charity that provide bicycles to children whom have had or have cancer. We had made an application and yesterday we got the call that the application had been processed, but I had to explain that currently it needs to put on hold as there is no way Harry can ride a bike at the moment. The charity do adapted bikes, but currently we need to see if Harry is going to regain any feeling back in his legs.
Suddenly everything hit me in the face yesterday. Having to admit that Harry isn't going to ride a bike again in the near future made me feel so very sad. Only days ago Harry was very proficient on his bike and was looking forward to bike club restarting in march.
We also had a demonstration from the stair climbing company. An interesting piece of equipment. It will be slow and cumbersome to get Harry up and down the stairs, but it will protect our backs from lifting him. We are going to get training on this gadget next week and hope there is one in stock for us to have and learn to use. I guess, accepting such equipment again, is hard to comprehend how in such a short space of time things have changed so very dramatically. 
Suddenly our home is being filled with equipment and their is an expectation that if Harry can't get up the stairs, that our living room should be given up for his bedroom. The same living room,which last   summer we put a lot of labour of love into transforming into a cosy and comfortable space for us to chill out in. 
I am again hit by a reality whom many people have faced during my professional life as a social worker. I've been the one assessing and in conjunction with the occupational therapist discussed turning communal spaces into bedrooms and littering the place with equipment. 
Now I am on the receiving end and I have a much greater understanding of the adjustments one has to go through mentally in accepting all of this. Physical changes to the home and equipment means there is no denial of the situation and few places to hide from the fact that a once able bodied person has come to need such aids to try and remain as independent and included within the family environment as possible. 
Currently we don't need to convert our living room into a bedroom as Harry is just about manageable to lift upstairs. This creates continued normality for Harry on being able to enjoy his own bedroom and belongings around him. Although his beloved mid height bed is going to have to be shortened and turned into a normal height bed, as it is too difficult to continue to transfer him into this height of bed. 
We continue to adjust to this new situation.
Harry has been quite unsettled this week in the night and thus tired and teary at many times in the day this week. He's been on a steroid and apparently restlessness can be a side effect. He has had his last dose today, so I hope he has a more comfortable night tonight, we so need it. 
Harry struggles to change his position too on a night due to paralysis, so needs help with this. Neither can he access a drink on his own. 
Our night time regime is time consuming as Harry cannot open his bowels without the aid of medication and some assistance and thus can mean him spending quite a while on his wheelie commode, hoping gravity helps too. This  is because he has lost control of his bowel muscles due to paralysis. Bath time takes 2 of us too, to make sure one of us remains hold of Harry to prevent him falling backwards in the bath. We have been promised a delivery of a raised bathing seat next week, so thus should help. 
Harry has been borrowing his friend's wheelchair, which has given Him such independence. The wheels are his legs, however the height isn't quite right to get a banana board (plastic board for Harry to slide on to aid transfers) across. He really needs assessing by wheelchair service to see if a more appropriate chair is available, plus we can't get pressure relieving cushions for a child's wheelchair without wheelchair services ordering these. We have been waiting over a week and our Occupational Therapist says they are given the 'short staffed' line re no appt. yet. So I kick ass today and ring wheelchair services myself, the result is an appt. next Tuesday, 9 am in Sescroft. Not ideal timing and location, but we'll take it thank you.
You see I have become obsessed about checking Harry's skin for red patches as he spends so long in one position, sat on his bottom. Without appropriate pressure relieving cushions there is a greater chance that his skin will break down and ulcers will appear. Life is hard enough without more to contend with. 
We are staying once again at Martin house hospice. This time for a planned stay. It should be 4 of us, but Callum, whom is never poorly, has been struck down by a sickness bug. It never rains but pours! Hopefully he and daddy can join us later tomorrow. Again plans have to be adapted as Paul and I were going to head out for lunch tomorrow, whilst the boys were occupied here. Hopefully we can have some time out together on Sunday.
I think we need some chill out time together as the last week plus has been quite traumatic. We need to regroup and move on. 
I came to martin house today with Harry as he was being reviewed by the palliative care and oncology consultants. It seems that they had hoped Harry would have had some sensation back In His legs by now, but he has none. They fear the spinal chord could be damaged and it is beyond self repair even if the tumour has shrink to alleviate pressure on it. However, time will tell. They have no plans to give him more radiotherapy as of yet anyhow.
The sensible part of me, is aware that Harry's paralysis prevents him from Feeling the pain that could be there from the existing cancer in his leg and pelvis. I am also aware that there is widespread disease in Harry's spine and if he regained his mobility, walking could be painful and bent due to this.
Today Harry has been happy, he has enjoyed school, attending for 3/4 of a day. He is happy to be at Martin house and we very quickly ended up in the art room making a terminal building for the airport he started last week. Harry has been very charismatic this  evening and Loved the banter with the staff. 
Harry is currently comfortable and pain free. That has become our main focus and priority. Let's face it, a cheerful, happy Harry makes us all smile with him. 

Wednesday, 29 January 2014


Just a very quick update to say we made it to center parcs last Thursday for the final night!
We managed to get Harry in the pool as you can see from the pictures below!
We have also managed to get Harry into school this week! A huge achievement! 
We have borrowed Harry's classmate's wheelchair, which he can self propel! It's brilliant as he has some independence back! He is amazing in the wheelchair and can turn 360 degrees within a very tight space! 
Harry remains paralysed from the waist down. We are adapting to the new 'normal'! We are hoping the radiotherapy may still provide some benefit, our consultant did day it could take a few weeks for the spinal chord to recover and get back into action, if the tumour has shrunk enough. We see our consultant on Friday so Harry can be reviewed. At least Harry has not been sick this time post radiotherapy! 
More later, but here are some pictures. 

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! 

Monday, 20 January 2014


Harry deteriorated rapidly yesterday, to the extent he became paralysed from the waist down, by the evening. 

 We have been at Lgi all day having him assessed.  He has had an MRI scan this afternoon, which has identified that there is a large tumour on Harry's spine. This tumour is pressing on Harry's nerves causing him to be paralysed from the waist down. The scan was just of his upper body, it also showed cancer in the surrounding bones. 
We are on ward 31 at Lgi. Seems strange being back in, having avoided a stay here since feb 2013. Harry has just had a catheter inserted as he can't wee. 
We are having a meeting with the radiographer tomorrow, with the possibility of Harry having a shot of radiotherapy in the morning. 
This could ease the pressure on Harry's spine, but if it works, it'll only hold the disease for a limited period. 
The radiotherapy will most likely make Harry sick and so we will transfer to Martin house tomorrow, to help with managing Harry's sickness and ease his pain.
This is all so very surreal. Harry was swimming on Saturday, then he went to a birthday party. He has had intermittent pains of late, but this change has been so sudden and has shocked us.
It always seems that when we begin to look up and see a window for a future, even one that stretches a few weeks, then our world gets shattered again.
Paul is officially back at work tomorrow, though on annual leave, as we were supposed to be enjoying a family holiday in center parcs. Harry is truly devastated not to be in center parcs and has been chanting all day that he wants to be there. We were all so excited about going and counting down the sleeps. 
There will never be a right time for Harry to deteriorate, but next weekend would have better! Grrrrrrr!
This cruel disease takes no prisoners and  doesn't affect anyone in particular, but for us families affected and surrounding friends, it is devastating.
We were told in March 2013 that the disease could grow further in Harry's spine and cause paralysis, we just hoped Harry would have passed away before he had to experience this. Harry is still with us in mind and spirit and so this is so very hard to witness, the fact that Harry's body won't work for him. We were just looking into getting him a bike with gears too, to help him ride with more ease. He loves cycling so much.
We need to give radiotherapy a try, but I fear so very much the side effects and wonder about the real benefit, knowing that the disease seems quite prevalent in his little, frail, body.
Tomorrow is another day, a day for more discussions and the main thing is to keep Harry comfortable. 
Being back in Lgi in this way resonates so many memories of initial diagnosis. This unplanned visit is so hard. Harry is fighting, shouting his protests at being here. Martin house is no center parcs, but it will make a big difference to us all. They have more staff there and I know we can get Harry at his optimum by just being in an environment that is less medical. I hope Mary's farm are visiting as he loves the animals she brings and this makes him smile. 

Thursday, 2 January 2014

2013 - the year of planes, trains and Automobils

We entered 2013 with Harry having his penultimate immunotherapy. At the stroke of midnight on New Year's Eve, I was having a small glass of  fizz in the playroom on ward 31 at LGI. Daddy was working and Callum stayed at granny and granddad's house.
This year at the stroke of midnight, we were all under one roof at home, with the boys tucked up in bed, we toasted  2014 in with friends Mike and Dee.
We had a lovely evening and a far cry from the previous year. However, in between these 2 events we have been through some of the lowest points possible, but also had some of the most amazing experiences, fun and laughter. We have learnt to live life to the full, when Harry has been well enough and we have created a massive memory box, one that isn't full and we are set to continue filling this as we progress into 2014. We have met some lovely people this year and have been astounded by the human kindness of others, from people we don't know as well as those we do. We have also found some people have raised above the bar to be there for us and as happens in these situations, we have been disappointed by those who haven't. Those people who find our situation too hard to deal with, so ignor it and carry on with their own lives, not wanting the sadness we carry to affect them. Life is hard and cruel at times, but it is the knowledge that friends and family are there to support us through this time and beyond the loss of Harry that will get us through this. 
At the beginning of 2013, our greatest fear was that Harry would relapse. Harry was so well at the beginning of 2013, so much so, I really thought that he would have been given the all clear and relapse would have been something we would still be fearing, alas it became our reality in March when were given the end of treatment test results. Our hearts shattered that day, as we struggled to comprehend that Harry had disease back in his bones. Harry's blood counts remained too low for any treatment that could prolong his life, however, never proclaiming to be a cure. Always mindful anyway of treatment versus quality of life, we have always been reticent about chasing more treatment. Harry had already endured one of the most aggressive treatment protocols there is to kill this hateful disease and for Harry it hadn't worked. 
Before Harry had relapsed I had feared the fact that there is no treatment protocol for relapsed disease, but now I have a greater understanding and have come to realise that there are so many different combinations of how relapsed Neuroblastoma presents, the pathway I feel has to be individual. For some a tumour can reappear that can be operated on, or shrunk again with chemotherapy etc. For Harry the disease isn't concentrated to one specific area, but is spread out in 3 hotspots in his bones.
Having been given the devastating results, that Harry had relapsed disease and that he was now incurable, terminally ill and eligible for palliative care, well we set about our journey of adventure. We were given a probable life expectancy of only months, based on how aggressive the disease had manifested itself in Harry in the first place. We are aware of children dying only weeks or months following a confirmation of relapsed disease, so we knew this was possible, despite Harry seeming so well. 
I can't put into words the utter devastation we felt then and still continue to feel. We may smile and laugh, but behind the exterior are tears of sadness. 

We kick off our adventures in April. Paul   goes on sick leave at work and I remain on unpaid leave from my job.
Since April it really has been a case of planes, trains and Automobiles. 
We fly down to heathrow, then hire a car to get to lego land in Windsor, then once at lego land Harry drives the electric cars there, we all enjoy the multitude of rides and the amazing pirate room was the icing on the cake. 
Harry loved visiting the Duxford imperial war museum, which has a huge range of planes to look round and admire! later in the month we went up in a helicopter over the Wharfevalley, paid for by our lovely friends in Otley. In May we finally got to go on our postponed centre parcs holiday and it was a case of cycling, swimming, racing Harry's remote controlled car and even venturing on the lake in a pedaloe.
Mid May, Paul's work colleagues put on a fun day, raising funds for us to continue  having adventures etc. this was a hugely successful day, not only raising £6000 for us, but was enjoyed by all. So many of our friends came and family too. The boys had a ball and we saw so many familiar faces, it warmed our hearts to know so many people cared about us. The day ended with a balloon release, which was so poignant, my eyes stung with tears! Harry was just starting with a limp that couldn't be denied, we knew the cancer cells were growing, but he never let it stop him bouncing around and having a smile upon his face. 

At the end of May, Harry and his friends experienced a Go-karting party, donated kindly by the company, harry loved his driving experience.  This  was followed by a trip to Diggerland, where he drove robot JCBs, Callum and Harry drove more go karts and operated diggers of course!
Half term finished with a visit to friends whom have jet skis! Harry sat on the back, whilst daddy speeded round the lake and Callum came on a crocodile inflatable with me. towed by another jetski. Callum and I however experience the coldness of the water as we came off going round a corner. Thankfully Callum thought it was funny and smiled through it, whilst I panicked for him! 
At the end of May, despite having had these amazing experiences Harry's limp became too painful for him to smile through, without the commencement of morphine. This was a hugely emotional time for us. Harry's pain increased rapidly and so he started on fentanyl patches, providing less side effects than oral morphine and a constant slow release of the drug. 
We really thought that it was the beginning of the end and so seized the opportunity that candlelighters gave us to  use one of their caravans in Filey at the beginning of June. The sun truly shone that week and Harry's pain was managed with the fentanyl patches. We did the simplest things that week, looking in rock pools for crabs, digging in the sand, playing football. It was fab and we even had a family day with both sets of grandparents. Believe me when you think the end is in sight you saver every moment, laughing with tears of sadness, unsure if the 4 of us would walk hand in hand again, run around and be together.
I was so pleased we went away, as memories help you get through the tough times and the remainder of June certainly was truly tough. 
Once back from Filey, Harry's pain increased and with that, so did the level of his fentanyl patches. As we have come to realise, there can be trade offs to taking drugs and Harry experienced, itching all over, trouble urinating, extreme fatigue and agitation. We venture into the hospice for the first time to try and manage Harry's drugs and pain. We are told whilst there by the doctors that they thought we would not make the summer with Harry and to prepare ourselves for the bitter end.
However, once Harry's drugs had been changed he was within days up and about again! Martin House Hospice is a fabulous resource and the fact animals can visit and there is an abundance of staff to provide therapeutic activities, Harry hadn't time to spend confined to his bed! 
In fact rather than settling for making Harry comfortable it was agreed that he could have radiotherapy to ease the pain in his leg, which he had at the end of June.
Again harry experienced the severe side effects that treatment can cause and July was very hard to get through. Radiotherapy seems to make Harry very sick and he was intermittently sick throughout July, though we seized the good days and managed some trips out, which again got us through those dark days where we were confined to the house, unsure how beneficial the radiotherapy had actually been. 
Thankfully the radiotherapy has been very beneficial and we managed to make it on our summer holiday to A caravan site near Bournmouth. We had an amazing week. I can't believe how much we packed in, visiting theme parks, a car museum, a plane museum, playing on the beach, a trip to the zoo and my favourite day -  a trip to the Isle of Wight, where the boys had their first ferry ride, first experience on a chair lift, Harry and Daddy tried zorbing and we still have our glass ornaments filled with coloured sand to treasure! 
On our return, Harry was poorly again with lots of aches and pains. Our Mcmillan nurse visited us twice in one day giving intravenous anti sickness and morphine to settle Harry. It seemed that I had taken his fentanyl patches too low following radiotherapy and perhaps reduced them too quickly. Once, Harry's fentanyl patches had increased, things were good again!
Harry reached his 6 th birthday, an absolutely amazing milestone for us! He returned to school, starting in year 1, he commenced beavers and cycling club. 
We managed to enjoy the last warm day of September by travelling from Pickering to Whitby in a steam train.  We enjoyed meeting friends for lunch and making sandcastles before returning hagain.
Despite, Harry having many good days it was evident that every day after patch change, Harry slept in, which meant he struggled to get to school that day and he would often be sick too, a side effect of the fentanyl. We therefore tried a new patch - buprenorphine, which Harry has tolerated much better, with less side effects!
Having thought we were on top of things and thinking normality could be present for a while, Paul and I consider returning to work! However, it always seems to be that once we can get the chance to have a breather, things go wrong again!
Harry commenced with intermittent pain again in his leg. 
We asked for rescans to see where the cancer was in Harry's body. 
Harry's pain became unbearable for him on 24 th October, again we consulted with our McMillan nurse, whom had the scan results! We had feared that Harry was riddled with cancer, having already exceeded his 6 month predicted life span, we knew he was on borrowed time. However, the scan results indicated that the disease had not spread in his upper body, but was back in his pelvis and upper left leg, where the pain was.
We met Harry's  consultant in clinic on Friday 25 th October, feeling very depressed as Harry was in so much pain. It was agreed that radiotherapy was worth a shot again to give Harry some quality of life Back. Having, got completely down about the prospect of radiotherapy and the sickness that goes hand in hand with this for harry, we were truly astounded to find out only hours later that Harry had a fractured femur!
Radiotherapy was postponed as it prevents fractures healing, Harry received a walking frame and became hop along Harry as he was non weight bearing for 2 weeks!
We were relieved that this seemed to be the cause of his pain, but reticent about not zapping the cancer cells for fear they would  multiply at an alarming rate. 
However, we were  given a carrot that same day that we had  that roller coaster ride in clinic at Lgi - a pending day trip to Lapland for all 4 of us!
As always, hop along Harry or not, we still headed to Scotland for half term to visit friends on October 26th! We went bowling for the first time with the boys and to the cinema. In fact twice that week we went to the cinema, trying to do low key activities. The second visit, we saw the film 'planes', a Disney movie. I have to say tears streamed down my face during the movie. Dusty the crop hopper truly reminded me of Harry, against all odds he won the race.  That film has really caught Harry's imagination and suddenly his Santa wish list was dominated by toys from the movie! 
Harry's leg thankfully improved and his pain decreased! Having feared in October that our Christmas would end up not happening, Harry has gone from strength to strength. December has been an amazing month! A month that I can not tell you we feared, for thinking that Harry would be in pain, or sick and weak following radiotherapy etc! 
The highlight of course was making it to Lapland. Harry continued on the theme of planes, trains and automobils. It was a 3 hour flight and once there Harry drove a ski doo and went on a sleigh pulled by reindeer!  This trip was so very, very magical and has left us with the greatest memories! We recorded the few minutes that Calendar showed of the trip and have dined out on watching and rewatching this! We all have a few seconds of fame! I can't wait to get the full DVD that is being put together, which we receive in February.
Harry is back riding his bike and we are thankful to get both boys back out in the great out doors despite the weather.
Harry has had recent aches and pains in his chest and as you can imagine our hearts miss a beat. However, he's been very well the last few days and he was shouting the loudest I am sure at the pantomime Aladdin!
Harry returns to school on Tuesday. Probable for his usual 3/4 days. He will be able to return to outdoor play though and run and jump with his peers.
We have a holiday booked to centre parcs on the horizon. It was booked in May and we will be going with friends. When we booked it, I really thought either Harry wouldn't be with us, or he would be far too poorly to go, but we booked it knowing our friends could take over the booking if need be. As things stand this  week, it's gonna be a fabulous break away! We are all really looking forward to cycling, swimming and enjoying the red squirrels again! 
Paul is going to get back to work this month, but I will remain off at present, holding the fort! Since Harry doesn't get into school till around 10 am and he does tire at the end of school, working 22 hours a week, feels a step too far, to rely on child care to support Harry before and after school. 
I do have some ideas for projects I could get involved with voluntarily though! 
I have been reluctant to say 'happy new year' as we do not not know what lies ahead. Harry has outlived the 6 month life expectancy he was given by medics. 
Unchartered waters it very much is. 
I certainly cannot live more than a couple of weeks ahead. Yes, I dare to dream that Harry will be here at Easter and it would be fabulous to have another summer with Harry. However, only if he is well enough to have quality if life. Harry does look frail to us, not healthy, but often grey and pail. He can be very hard to live with at times, due to the medication he takes, however, quality he does have to his life and we will continue to embrace that! 
The adventures continue - who knows what the future holds, but you can bet we will grab the good times, let 2014 commence!