Look north article

http://www.bbc.co.uk/programmes/p0338sxp

Above is a link to the article shown on Look North this week, which Harry and myself featured on to raise awareness of childhood cancer. 

Harry's 8 th birthday

Wow I can't believe how 8 years ago how I felt so ecstaticly happy to have my longed for baby in my arms. How beautiful the world was and now, well we will always have a piece of our heart missing. Life never quite so beautiful. 

I wonder what Harry would look like now, I wonder what he would have wanted for his birthday, I wonder what kind of cake he would have wanted, I wander what kind of party he would have had, I wonder............

That is all we can do, wonder. 

Harry's much loved and cherished hamster - Joey, died the night before his birthday. How timely and poignant. When I broke the news to Callum he was very sad, we all felt sad, because Joey was such a link to Harry, but age just over 2 Joey had been struggling with life, his mobility was very poor, he lost interest in his food, just like Harry did.

Trying to put a positive spin on things I told Callum that Harry had the best birthday present ever, that Joey was now with him in heaven.

To celebrate Harry's birthday we bought 3 balloons, to take up to his tree on the Chevin and we had finally got a plaque to attach to his bench. The day started with heavy rain, but fortunately brightened up into a beautiful day and the view from The Chevin was awesome as always! We had lunch first in the cafe and being the heritage weekend there were activities going on up at The White House, which enhanced the day. We attached one ballon to the bench and let the other 2 go. A very moving and touching time, to see the balloons float away. 

We returned home for cake, chosen by Callum and he blew out the candle with the number 8 on. Both sets of grandparents joined us.

We buried Joey in the garden. Callum wanted to cremate him, but burning a wee hamster, well decided it was just not appropriate! Harry was cremated so I understood where he was coming from. So Joey has a little cross, to mark his burial ground. Like Harry, Joey will never be forgotten and has his legacy too in the form of the book 'Runaway Joey!'

So here we are 18 months of living without Harry. Callum talks lots about Harry, gets upset from time to time, but, Harry remains a part of our family and always will.

Our holiday to North Wales was great and being on a smallish caravan site meant Callum could go off and play with the other 5 year olds on the site, which was lovely to see. Though Callum did exclaim during that holiday that he wanted Father Christmas to bring him another brother, called Harry! So the conversation then leads to the parameters of Father Christmas's powers to grant wishes!

A piece of our hearts will always be missing, till the day we die. We try and get on with life and by and large we do, but behind that smile is always a feeling of incompleteness. 

I think keeping busy is what many grieving parents do, as the moment any of us stand still the overwhelming feelings of grief come, the flashbacks, the memories and ultimately the sadness.

I have just had 2 people from Look North here, to do an interview, to be shown tonight in conjunction with Candlelighters, to feature our journey and also focus on the statistics of childhood cancer. I know what I said will be edited into seconds and they will show footage of Harry too. But I hope it can raise awareness that childhood cancer exists, that it comes and invades your whole family, not just the child fighting to survive. The reason I do these things is because cancer affects the rest of our lives. The flashbacks will always be there, the grief, the pain of living without Harry. They don't go away, regardless of how hard we try. So I figure I might as well use our experience to educate and help others. Most of all it keeps Harry's memory alive. Harry though not on this earth anymore, through me, can still make a difference! 

September 2015 - childhood cancer awareness month

I haven't had time to write on here these last few months. I've been completing a university module for work, to qualify me as a best interest assessor under the mental capacity act, just handed it in last week! Fingers crossed! 

I have also been busy getting a power point presentation ready. I am lucky to have a friend Lynne Rhodes-Holme whom met me for the first time in April 2012, giving a presentation to Otley Rotary club only hours after Harry's 9 hour op to remove his tumour, help set up 'Harry's legacy' which has been launched in conjunction with the Rotary club to raise money for Candlelighters. I gave my first presentation under this umbrella a few weeks ago to Leeds Rotary club, which is in its centenieth year and they have chosen to support candlelighters for their charity of the year. They gave £5000 to Harry's legacy which we are truly grateful for, in exchange for the presentation I gave with Lynne Rhodes- Holmes! Hopefully there will be lots more opportunities to raise money over this next year!

We have also had a fab summer with Callum during the 6.5 week hols! Will write more over next week, but thought I'd share my picture of Callum's first day back at school today. Callum has just started year 1, the year that harry is in the picture and the last year he entered. Feels strange to think that at the end of this school year, Callum will be older then Harry ever was on this earth. Though Harry will always be Callum's older brother. He talks lots about Harry. He cries about his loss of harry too. 2 miles up a hill in Kettlewell he sobbed his heart out for Harry and said  if harry was still alive and poorly, then he would give the money he's been saving up, to help make Harry better. We all had tears running down our cheeks and shared a group hug! Just because Callum is young, it doesn't mean he is too young to grieve and have that big MISS that we all feel. 

It is Harry's 8 th birthday on Saturday too, so an emotional week. I remember 8 years ago, feeling so excited about the prospect of meeting our baby, harry was born 2 weeks early, so my wait wasn't long! 

I also remember this time 4 years ago. Harry had, had night sweats and had been waking up the night, then seemed ok for his birthday. Then he seemed to be getting withdrawn, then he had intermittent pains in his legs, abdomen and constant temperatures. I remember going out of my mind with anxiety as Harry turned from our gregarious boy into a lifeless being laid out on our sofa.

September is childhood cancer awareness month. Gold is the colour for childhood cancer.

A poem, written by a cancer mum. The words are so true. Cancer is so horrible, most don't want to imagine, but sadly it was our reality and the reality of too many.

June 2015

So we have reached June. The month summer officially starts. I remember this month 3 years ago in 2012, the month Harry was in full swing of high dose chemotherapy and the full effects were taking shape in the form of infections due to rock bottom immunity, followed by VOD, whereby Harry was very closely monitored, his fluid intake reduced to only a few ml as his kidneys could not take more. Intensive care was a high possibility, but fortunately never became a reality. The same month saw Harry improve to the point he could be discharged home. Final touches were also being made to our plans for Harry's Summer Ball, which took place in July 2012.

At that point we greatly valued the fact that candlelighters funded holidays. Something we would never have booked in advance if at all, as even when Harry was discharged he was still having regular platelet and red blood transfusions. The risk of infections remained high and thus so was a re admission to hospital. With myself on reduced pay due to having exceeded my 6 months full sick pay, a reduced income  meant, little left for holidays.

We also had no idea how long Harry was going to be in hospital during high dose chemo, so with timescales unknown, holidays as said was not something we could book. Therefore having a week booked for July 7 th in Filey, in a candlelighters caravan was the carrot all the way through high dose chemo. A holiday, that could be cancelled by us if events took over and Harry was too unwell to make it, without leaving us with a whole in our pockets.

Thankfully we made it, a valuable time to regroup as a family of 4, before what we know now was an onslaught of side effects from radiotherapy. As I've said before, creating happy memories in a place far away from hospital, keeps you going through those very dark days, where the fog is so thick and the mud so deep. 

Fast forward to this June, 3 years on and just over a year since Harry died. We are on a flight on our way home from Turkey. Holidaying as a family of 3, in a country we have never visited before, doing it all inclusive style, another new and making new memories. We haven't holidayed abroad since Harry was age 1, when we went to Nice in France. When pregnant with Callum we didn't want to go abroad, it felt too much hassle and Harry was a wriggler. I remember age 1 the journey home felt like a nightmare. We were sat next to a man reading a broadsheet paper and Harry's wriggling kept disturbing him. I took him to the toilet to stretch our legs and to do something, but deeply regretted this when his wriggling and grabbing meant he broke the soap dispenser. I have thought of this much today on our flight home and the memory made me smile when I went to the toilet mid flight. We are flying with Jet 2 just as we did back then.

So having Callum make our family complete, but being more of wriggler than Harry, trips abroad on a plane felt far too stressful. I remember going on a train ride from Whitby to Pickering and back when Callum was just 10 months and Harry was just 3. By that time Harry was manageable and enthusiastic about the train ride, Callum, however would not sit still. Having discovered he could walk age 8 1/2 months, he just wanted to be on his feet and I duty fully followed!

By the time Harry was 4 and Callum was 2, we started to think about holidays abroad, though having discovered centre parcs, we had found a new way to holiday in England. Though replicating this in France or holland sounded inviting.

However as you all know Harry was diagnosed with cancer just after turning 4 and holidays abroad were put to the back of our minds. We had to fight to merely survive.

As you all know we had many adventures with Harry in the months that followed his confirmation of relapse. Though we had many smiles, laughs and memories to cherish, it was exhausting. Harry was always up and down. His pain took a cocktail of drugs to manage and the levels varied from day to day or week to week. Support was incredibly minimal. It felt like the hospital had given up, tossed us to one side as Harry wasn't going to live. It had felt like they had shouted a very loud 'NEXT'. 

We were in an unknown world. We had been told Harry had only months to live and so set about creating as many memories as possible. The rate at which we did things makes me dizzy to think about now. You get a strength to continue that you never knew you had.

However, even we could not continue at the rate we were and so when September 2013 came and Harry entered year 1, a milestone only weeks earlier we were told by the hospice doctors that Harry wouldn't make, we took time to reflect. We felt we had to enter into a new phase of normal. One where we knew Harry was going to die, when, we had no idea, but we needed some sort of routine for the boys and us. We could see that Callum was being spoilt too. He was going to live and we needed him to grow up a lovely sensitive boy, not one who got what ever he wanted or got treat after treat. After all normal life is not like that. Big days out need to be a reward, not an everyday occurrence. Therefore our adventures slowed down. Harry went to school, Callum to nursery and I and Paul remained off work. Life was still unpredictable with Harry and as much as we were creating a routine, it did vary depending on what type of a day Harry was having. He was on fentanyl pain relief patches which changed to buprenorphine, which suited him better, meant he wasn't so drowsy and sick. 

Life ticked on in September 2013, but then Harry started limping again, which we found out at the end of October was due to a fractured femur, not the disease! However, on the same day we found out harry had a fracture, we also learnt that we had the opportunity as a family of 4 to go to Lapland for the day in December and that became the next carrot!

So Lapland was the last big day out we had, we got to go abroad if only for the day, but a day we will remember for the rest of our lives. It was a magical, fun packed day.

So, back to our holiday in Turkey! A holiday, so far removed from our previous adventures. A relaxing holiday. A holiday as a family of 3. I know we have come along way in the last year plus, as I know we couldn't have had this holiday last year and enjoyed it. Yes, we missed Harry every day and there was one evening in particular when we had a la carte in the quiet restaurant, where Paul and I looked at each other and commented on the fact that we had an empty chair. This had not been so glaring in the buffet restaurant with the hussle and bussle, but somehow it really mattered sat there that night. 

For us at this time in our lives, the all inclusive aspect was perfect. We felt looked after, no meals to cook, not even the stress of deciding where to eat and where Callum would find something he would like too. Food was available all day, from doughnuts, to pancakes, to ice cream to more healthy options, to cocktails and beer and for Callum a constant supply of slushies and chocolate milkshakes! 

Our hotel had private access to the beach, where food and drinks were also available. 

We certainly chilled out. Spent most days at the pool and then the beach! We did manage to Practise some bartering in the town of Antalya where Callum even got some light up plastic toy for free! 

The hotel had a small fairground (all included too) and Callum was made up that his feet reached the pedals and so he could drive his own car and we could each have a car and enjoy some frivolous fun!

The holiday was so needed and helped us regroup as a 3. Callum had so much fun. Yes, he talked about Harry, he regularly does, such as when it will be Harry's birthday in September he wants to send Harry something piratie! So we will have to think of something that can be attached to a balloon! 

Being on holiday also means that there will always be those awkward times when you talk to someone new and you know that the conversation will go at some point towards children. There was one couple we bumped into a few times and when the mum and me were sat by the pool, she asked me if Callum was my only child and I said yes, then she asked if I would have more, at which point I told the  truth and explained that Callum had an older brother, but he died last year from cancer.  I went on to say what a handful the boys were when they were younger being born close together, whereas she had a big age gap between her 2. I guess after dropping the 'bombshell' a natural conversation flowed!

 We became friends with another couple. They were younger than us. On the last night when the conversation was about the age we were when we had children, eventually it seemed the right thing to mention we actually had 2 children. It was strange as the couple said, we had talked of children, but obviously only Callum was with us and our 'confession' explained the use of the word children! 

It is strange talking to new people and people whom you meet for a short time. Paul felt perhaps we should keep a lid on our chest of woe, but it depends on the situation. It is strange having conversations with people and feeling like you miss out chunks to avoid having to say that we had a child whom died of cancer. 

However, I feel I am better at dealing with this and more able to mention Harry and talk about him to others in a more natural way. I hope anyway! 

So back to work, back to school for Callum, however thd summer hols are on the horizon and hopefully we will get away for more adventures in our caravan!

Harry's pirate ball

Nuzzlets farm April 2015