Saturday, 28 December 2013

Christmas 2013! We made it!

Well since Lapland we seem to have had a whirlwind of events! 
Harry was in the church nativity on December 15 th as a shepherd. Callum refused to be a shepherd, but created a new character for the nativity play this year - 'the Gruffalo!' 
After the church nativity play I sold 25 cuddly toy pigs for 'Harry's Star' a branch of the Brain Tumour Society, with the money being ring fenced for post treatment support for children and teenagers in Yorkshire. 'Harry's star' was set up as a legacy to another Harry that died in 2010.
I was chuffed to sell so many pigs and also received £50 in donations! The remaining 15 pigs had been reserved, meaning I have sold 40 in total!
Post treatment support for all the cancers is an area that I am very interested in, knowing that the impact of the treatment on children can last months or years.I currently   know families struggling as children have completed treatment, but unfortunately still remain in need of medical intervention. 
Following a fab nativity play at church, Harry rode his bike for the first time since October! He managed very well. His determination coming through yet again!
As said at the end of my last blogg, we have been unsure if the pain would decrease as the fracture healed, knowing that cancer cells were present in his leg too! However, Harry has been so pleased that he is allowed to run again and the pain is controlled via his buprenorphine patches still in situ, meaning there has been no stopping super Harry!
Harry commenced his last week at school, by being involved in the school nativity play. An event he didn't partake in last year, as he missed so much school due to being in hospital either as an inpatient  or in clinic having blood or platelet transfusions.
Harry performed in all 3 performances, he had a small line as narrator number 16! He sang his little heart out and I have to say my heart nearly burst with pride! It feels unreal that he has made it this far, with the energy to be able to participate in the festivities!
On the Wednesday, Callum had his nursery nativity play and having told me, he wasn't going to be in it, he stood on stage and sang his little heart out too in 'whoops adaisy Angel'. Callum was a king and made a very good job too!
So Harry made it to the end of term! Another term completed! 
We have been very sociable this Christmas too, the first time really since Harry was diagnosed!
We have had friends here and been out with friends too. Exchanged many a Christmas present too and drank a few glasses of wine! 
It is the first year that both boys have been literally bursting with excitement about Christmas! Harry was excited last year, but wasn't as well as he is this year and Callum is full of it too now, so between them, the giddiness has been getting to a new pitch every day! 
Christmas Eve morning was spent at Martin House Hospice Christmas party! A lovely couple of hours spent there. The boys just love that place, seeing Mary's farm animals, getting their faces painted and of course seeing Santa! Their 7 th Santa of the season I do believe! 
Harry and I even went on radio York, live, as they had a reporter at the event! 
The boys ventured outside to play on the wooden fire engine, even though it was freezing! I was relieved that the hose nearby had been taken down for the winter, as Callum made his way straight for it! A soaked, cold Callum wouldn't have been fun!
Having had their faces painted as reindeer, of course it was only right and proper that they had bells to jingle as they ran inside and out pretending to be Rudolph! 
Once home our friend Janey visited us and we were able to exchange more presents! We finished Christmas Eve with a family meal with my parents, sister, brother-in-law and niece! 
The boys went to bed quite well considering their excitement! Only of course after, a mince pie, carrot, whiskey and milk were laid out for our pending visitors of the night!
Once they were in bed, of course mummy and daddy elf set to work ensuring we had all presents retrieved from their secret hiding places and placed carefully under the tree! 
The boys amazingly slept in until 7.30, the time I needed to put the turkey in the oven! Their faces were priceless when they entered the living room and could see that Santa had visited! Such special times to treasure, that sheer magic that only children truly have! 
Once the turkey was in the oven, the boys were allowed to open their presents! Lots of whoops of delight as they got many of the presents on their list! 
Granny and Grandad took them to church and play at theirs after, whilst mummy and daddy prepared lunch. We had my parents, sister, brother-in-law and niece over, so 9 in total! 
Actually with the aid of a gin and tonic and then mulled wine, dinner was ready for about 1.30! 
The boys had ripped open more presents from granny and grandad before lunch - more pirate playmobil! Getting them to sit down and leave their presents was a bit of a challenge, but the temptation of Christmas crackers won them over! 
At the end of Christmas Day, 2 happy but shattered boys went fast asleep! 
Festivities continued on Boxing Day as we went to grandma and granddad's for round 2! Our friends visited in the afternoon, with Paul, his dad and friendRichard  going out for some cheeky drinks, whilst us ladies chatted nearly in peace as the boys played with their friend Olivia and baby Jessica finally slept! 
We had tea with our friends and Grandma and Grandad, then the boys shared a bath with Olivia before bed! Being in a strange bed, it took a while for them to fall asleep! Up though for 7 am, but Grandma and Grandad played with the boys, whilst mummy and daddy had a lie in!
We have rounded the week off with our friends from Scotland visiting and staying the night!
Between our 2 boys and their 2 boys, we had the ages of, 2, 4, 6 and 8! Adam age 8 and Callum age 4 seem to be the worst for plotting and planning though! 
Once finally asleep, the house was quiet until 8.30 am this morning! Result!
Harry has been on good form. We reduced his patch slights before Christmas, but he soon started with chest pains, like he had in the summer, when his patch got taken too low, so we quickly increased his patch again. Within 24 hours the pains had gone. However, this morning the pains were back, but only temporarily. 
As always we have no idea what winding twisting turns our path has in store. 
However, with over a week of the Christmas holidays left, I'm sure there is still time for more fun and festivities! 
Happy Christmas to one and all!

Wednesday, 11 December 2013

Lapland pictures - part 2!

Lapland pictures! Part one!

10 th December - Lapland with the charity 'when you wish upon a star'

I am writing this on the plane on the way home!
We have been to Lapland today!
We were up at 3.40am having stayed overnight near the airport. Bleary eyed we put many layers on to keep the cold out in the pending minus temperatures!
Both boys struggled to get to sleep the previous night, but awoke with the excitement of visiting Santa in his homeland!
The adventure begins at the airport. We are greeted by a bagpipe player,  carols create that festive atmosphere; an array of characters including a massive penguin, Freddo the frog and a lion hand out sweets to the excited children, whilst we queue to get checked in! 
Having successfully negotiated our immense amount of hand luggage, that included all our snow gear and medicines for Harry, the boys were given a rucksack each with chocolates, drawing packs, felt tips, playing cards and torches: entertainment for the flight!
We aboard our plane for 7am and without any delay, we are soon high up in the sky, able to see the sunrise! 
We fly via Monarch airlines, the first ever company I flew with at the age of 18! 
We are given drinks and breakfast before  entertainment starts and the intercom system is  taken over by the singing of Christmas songs! Both boys get involved and sing over the intercom! Then there is a joke telling time and Harry makes everyone groan with his joke
'Why do Giraffes have such long necks?
Because they have very smelly feet!' Boom, boom!
Upon landing we venture into the enchanted forest.
The boys adored the snow. They were quickly having a ball running around in the crisp fresh snow, helped by new friends Zoe and Lauren, whom the boys flirted with throughout the day! snowball fights were started by Callum and soon a small group were involved! We headed to the reindeers and go on a short trip in a sleigh. It is dusk by lunchtime, but the white surroundings make it feel lighter for longer and the candles dotted in the snow illuminate pathways and create that magical feel that an enchanted forest should have! 
We quickly moved onto the skid doo snowmobiles, trying to fit all the activities into a short space of time! Daddy gets to drive a skid doo on his own, Harry gets to sit at the very front of the leading skid doo, with the forest worker and Callum and I stick to being pulled in the sleigh!
Callum wasn't happy wearing the helmets and had a mini melt down, but soon recovered when he got to drive his own mini skid doo! Callum would have stayed driving his round in circles all day! The expression on his face was priceless, hard to capture in the dusk, unfortunately, but the calendar TV cameraman took a shot of him, so watch out next week! Having experienced the snow slides and got a little cold, it was time to sample the refreshments. Barbecued sausages, toasted marshmallows, hot chocolate and berry juice, hit the spot very nicely!
Harry suddenly became over cold, so we headed to the nearby log cabin where there was an open fire and seating to enable us to warm up and feel toasty warm again. The enchanted forest experience was rounded off by a firework display! 
Back on our coaches we were very quickly in the hotel where we had a scrumptious buffet lunch, serenaded by an elf band!
The hotel is truly festive with its Christmas decorations, massive long tables adorned with red table cloths! 
Desert was fruit and cream and the boys got stuck into the table full of chocolates! They both filled a bowl each, but instead of eating the lot themselves they decided it was a good idea to go round whoever they could and offered Them out! I felt a very warm mummy glow as people thought they were very cute! 
It was soon time for singing as we awaited the arrival of Santa. The boys got onto the middle of the stage and with the other children gave loud renditions of Rudolph the Red Nose reindeer and Jingle Bells! 
Word got out that Santa was outside and the boys were so very excited seeing him walk outside with his reindeer! When Santa arrived in the building, Harry couldn't contain himself and was shouting 'Santa's here, Santa's here!' To anybody and everybody!
Each child got to sit on the sofa with Santa, have a short chat and recieve a present- a fluffy, cuddly, reindeer! 
The atmosphere in the hotel was awesome! I think because everybody had such common ground - a child with life limiting problems, it felt like one very big family. 
It felt quite liberating to be with people who just know how difficult life can be at times. Nobody looked at each other in sympathy, as is usual when we go out and our story is shared, but there was the ability to swap stories and feel included! 
Our day was rounded off by a visit to Santa's village. The festive feel that oozed from this place made my eyes sting with tears! We crossed over into the Arctic Circle, which is marked by a dividing blue line of light! We visited a few souvenir shops, but the boys were desperate to play in the snow and Callum  having had a very large melt down in a shop, surprisingly recovered when he got to go out again on the snow slides! 
The boys just loved the snow. It had snowed all day and because of the clouds, we had no chance of seeing the northern lights. 
The amazing Christmas lights made up for it though! Giant snowmen and real Christmas trees, that grow there all year round! 
Tired and ready to go home, we get back on the coach at 5.15pm. The airport is thankfully  only a short drive away. 
Our day in Lapland draws to a close. 
We had an enjoyable Christmas dinner on the way home, followed by a small bottle of sparkling rose wine! Callum slept the whole way home, not even wanting to wake up for his meal! An exhausted little boy! He was very happy though to be greeted by another addition to his ever growing cuddly toy collection upon waking up - Paddington Bear! Each child received a Paddington Bear as another souvenir of their magical day! 
Towards the end of the flight Chris Kamara (former footballer) led singing over the intercom, with a great rendition of Angels, by Robbie Williams, then moving onto Elvis before being rudely interrupted by the need to land! 
Harry had fallen asleep in the latter part of the flight and was very tired and grumpy when woken up to disembark the plane. However, his mood was lifted when greeted on the way out of the airport by a big hug from Lauren Drummond (chantelle in holby city) and Zoe (former production from holby city); and if that wasn't enough, each child left with another goody bag and balloon and a local choir were singing Christmas carols. We were completely choked by the end and both of us were fighting back the tears of having experienced such an awesome day!
It was a day that money can't buy. Medical support was on standby throughout the day. Medical insurance was not an issue, we just made a contribution towards this and the charity, just sorted it! To go out of the country for so many of us, is not something we would do on our own. To have such an immense team surrounding us, made it all possible! 
The organisation must have been immense too, all the goody bags packed, all the contents bought or sort as a donation from companies. The planning and time that went into making this adventure is not underestimated by us.
Yet again, we are bowled over by human kindness. 
We are at a time of uncertainty with Harry. I have been panicking about the pain he has had in his leg and wondering if radiotherapy would be necessary pre Christmas, but Harry has had amazing stamina this week and is just loving running about again! I am certain that the  carrot of going to Lapland has spurred him on, increased his determination and I am now feeling warm and fluffy inside and feel I can allow myself to look forward to Christmas, knowing that as a family we shall all wake up on Christmas day and enjoy giving presents to each other! 
Live, laugh Love! 

Tuesday, 26 November 2013

25 th November

 November so far has been quite an emotional time really. Anniversaries of diagnosis are always hard to get through as flashbacks of events are always at the forefront of our minds. 
Perhaps this year is so different to last as we were still ploughing on with treatment and had hope for the future. This year we know Harry's future isn't bright and we just leap from one week to the next unsure of how things will develop. Last Friday Harry had a lot of aches and pains in his leg and chest and this causes our hearts to flutter with anxiety. I was never like this pre cancer, but the simple fact with Harry is that he does have cancer cells in him. The scan showed no progression in his upper body, but we also know the development of cells has no rhyme or reason and just as it could stay stable for weeks or months it could still go BOOM too!
Friday afternoons are fun for Harry at School and so he went in for lunchtime and he seemed fine! Mind over matter and all that! He was keen to talk about something in show and tell and so he took in a poster of the Battle of Britain memorial flight, which included a Lancaster bomber, a hurricane and a spit fire. With this picture, Harry also took the photograph of him sat in the driving seat of a Lancaster bomber! He showed the class and answered their questions! 
Harry can at times say he has pain and the next minute be running, I know at times he can manipulate situations, but I also think he does have a constant level of pain too, of which he is used to and for the majority of the time he just gets on with life! Maybe our gift to him is to enable him to join in with his peers and be as normal a 6 year old as possible. I do believe that wrapping a child up in cotton wool makes them weak, introverted and focused on what they can't do and the pain they have. 
Trying to encourage Harry to keep marching on, gives him that lust for life that he has. 
Due to what Harry has been through though, he is not the boy that he would have been if this had not happened and also the amount of medication he is on currently for pain relief, gives him the fragility and vulnerability he never used to have. 
We were in hospital at the end of October when Harry got the x ray results that identified his fracture and we met Jo a volunteer whom we haven't seen since February. Jo played with Harry at home and hospital most Friday afternoons between September 2012 and February 2013. She was brilliant with Harry and they had the best fun together. Therefore I was very surprised that Harry could not remember Jo, even after 30 minutes together, his memory was not jogged! 
Harry has blocked out the 15 months that he was on treatment, he can't remember really being in hospital and the awful treatment. He remembers odd bits. Partly I guess he was very young at the time, but I think this has been his way of dealing with what has happened.
Harry isn't going to live into adulthood, but if he did I wonder if the events that he has blocked out would have haunted him later in life. 
Psychology fascinates me and many children must block out horrific events, particularly when at an age when they can't comprehend what has happened and articulate feelings. However, events can cause distress later in life as triggers cause flashbacks. 
This is why, I have quite a passion for support being available post treatment. There is virtually nil support at present. So much money is put into the treatment of the child and should they survive, it feels that the work is complete. The network of support available whilst treatment is ongoing comes to a halt and families are left nearly drowning at times post treatment trying to co ordinate the right services to assist those children to physically and mentally reach their optimum potential. When children move into adult services at 18 then there is a whole new set of rules too, as these people may have survived, but may not be able fully participate in the working world and the benefits system is so very complex and harsh. 
We attended a candlelighters led day on Saturday 16 th November to provide feedback on all levels of support during and post treatment. From the feedback it was astounding how little support people had post treatment. Education for many was an issue as children were not given special allowances for poor attendances due to post treatment fatigue, hospital appointments and ongoing treatment.
Oncology children I feel fall between services. The cuts continually being made by the councils in funding service provision means often only severely disabled children get the support. Oncology children are often it seems not severely disabled, but are left with learning disabilities; hearing problems, issues with diets as treatment has affected appetites and reliance on being tube fed causes delays in normal diets being resumed; problems with mobility can be an issue too as children are weakened by the treatment or in some cases it seems the chemotherapy has had a detrimental effect. 
Our experience with education has been mostly good and Harry's attendance has never been an issue, he comes in at whatever time he can and we have never faced issues around getting him in at x time so his name appears on the register.  However, many have, which is horrific as the whole cancer journey is stressful enough.
Harry has also come out of treatment with his hearing in tact, mobile, no learning disability and in many ways healthy, but for the fact he has relapsed disease, which causes him pain. This enables us to continue trying to create normality and also carry on with our adventures. Lapland is looming! We are busy getting snow boots and equipment sorted to keep us warm in the very cold arctic conditions! The boys are excited and so are we! We are making a mini break of our trip and will be staying near Humberside airport before and after our day trip. The day before we are planning to visit The Deep in Hull. A sealife centre with a large underwater tunnel I believe! 
Christmas is looming too. We will reach for the stars in trying to create the magic and embracing what will most probably be our last Christmas as a family of 4. 
This time last year I had no idea if we would reach this one, but we have and so perhaps anything is possible!