Tuesday, 27 August 2013
Since my last blogg Harry has had no sickness! He has had days when he's slept till lunchtime, a side effect of the fentanyl patch, but on the plus side pain has been minimal! We have managed to get out and about and had a great day at cannon hall farm meeting friends from university (from 1997!) up with their children on August 18 th. Harry was on fine form and able to climb on the climbing frames, run about and play with his friends. We changed his fentanyl patch whilst at the farm, to try and time the side effects kicking in whilst he was asleep. However, Harry woke up quite grumpy on the Monday and was erratic in mood. This is a side effect of the fentanyl patch, but to make him pain free it is a trade off! We have a great afternoon on Tuesday and head to Golden Acre park, where we are on a geocashe hunt with some of his friends. Having slept till lunchtime Harry had immense energy and was in a fabulous mood. We collected Callum early from nursery to join in too! Callum is acutely aware that Harry is on his summer holidays from school and said a couple of weeks ago that he should have a holiday from nursery too, apparrently even his nursery teacher said so! Callum's nursery runs 51 weeks a year and I need to keep him in, it's great back up for managing Harry's bad days and Callum loved going really, he just thinks he's missing out on having fun!
Wednesday was an exciting and good day. It was the day Harry got his first pet - a hamster! He's an early birthday present. i took both boys to choose him. Callum had agreed that Harry could ultimately decide which hamster to buy, but he loved joining in with the experience! So we have Joey! Harry loves him very much! Grandma and Grandad came to stay for 2 nights on wednesday too. Grandad to help daddy lay some paths in the garden and put our broken patio back in situ. Harry had an arts and crafts day. A worker from Martin house visited too, to play with Harry for a couple of hours. She always brings crafts for Harry to do. He decorated some mugs, painted and made some models!
I had my hair cut whilst Harry was being entertained and whilst Callum was at nursery too, I also had a potter around town!
Thursday was a bad day, again the day after a new fentanyl patch was given. Harry was in an erratic mood again, lasting all day! Callum was at home too and Harry wasn't very nice to Callum, hitting and shouting at him much of the day. This behaviour we know is the impact of Harry's medication and not our Harry. Harry is very hard to distract and manage on these days. It is emotionally exhausting and heartbreaking, particularly when harry asks me when his port is going to be removed and I tell him that it can't because he still has cancer cells present. I was thus dreading Sunday 25 th aug, whereby Harry had, had another new patch administered on the Saturday, but he had a fabulous day! We went to church, whereby he saw his friends and ran around afterwards! We enjoyed the sunshine in the afternoon and went to Harewood house with Granny, Grandad and Grandma too. Daddy and Grandad were having another day laying paths!
The boys loved running around the grounds, seeing the birds, in particular the penguins and then playing on the climbing frames before it was ice cream time! We came home and had a BBQ! The sun was still shining, unusual for a bank holiday weekend!
The sun still shone on Monday too! Paul finished the paths by lunchtime with his dad and it was hotting up so a good time to finish too! The boys loved having their patio back and were playing in their sandpit and bouncing on their little trampoline! It was too hot to sit in the garden, by the afternoon, so we headed to Burnsall and paddled in the river there. Fishing nets in hand, we manage to catch one tiny fish, but this created enough excitement and made up for the fact Harry fell in the river getting almost completely soaked! Having changed he played top trumps with his dad, whilst I paddled with Callum some more, then I watched the boys play football, well until Callum ran away with the ball and refused to give it back! We then decided it was tea time! Having looked at the menu in the Red Lion pub, I see a notice for pizzas in the nearby manor house! We head there and sit outside by the river, whilst the boys play and we await our pizzas! Beautiful stone baked pizzas at good prices too! They serve them Saturday and Sunday tea times and bank holidays too. We will be back! A great finish to the bank holiday weekend and a very far cry from the one we had last year. Harry was so very poorly last year after his radiotherapy. We felt so hopelessly alone and overwhelmed the bank holiday last year, it was horrendous. Harry was vomiting frequently, his NG tube frequently came out too, we had frequent trips to LGI to have it refitted. Nothing seemed to help Harry medicine wise until he was readmitted at the beginning of September for nearly 3 weeks. Intravenous medication was the only answer. We really thought Harry was going to die.
Though the future is not bright for Harry now, we feel blessed to have these good days with him, whereby we can all smile and have fun and continue to build our memory box! I have my fourth photobook of the year to prepare this week, so many happy photos that we will treasure forever!
Friday, 16 August 2013
Harry awoke Wednesday morning in a good mood, smiles and minimal pain! We went to bed on Tuesday unsure if we would see him smile again and really thought that we had got to the point of just keeping Harry comfortable.
Harry has other ideas and has far too many arts and crafts ideas to be medicated to the extent he just sleeps! We had a quiet day at home and Harry made lots of things and enjoyed our new delivery of craft materials from Crafty Crocodile! I was very excited too! Rainbow Pom poms, coloured paper doilies, badges for Harry to make, gummed paper and not forgetting glitter glue amongst other things!
Harry even rode his bicycle at the end of our road. Harry is such a determined boy, a fighter and an inspiration to never give up.
We as parents are finding this emotional roller coaster exhausting. We gave it our all last week on holiday to try and create the best fun and memories and we are feeling a loss of energy this week on top of seeing Harry poorly and in pain. To see Harry smile is a big boost though!
Yesterday we even made it to Harlow Carr for the afternoon. We took the buggy we have, but in between sitting in it, Harry had bursts of energy and was able to run around the new play area there. A wooden, monster playhouse, with a slide coming out of its mouth!
Harry's not the boy we had last week, whereby his medication was vastly reduced, but he's so much better than the boy we had laid in pain and intermittently vomiting on Tuesday.
Harry's 6 th birthday is on 12 th September. Last year he was in hospital for his birthday, attached to 5 machines, that intermittently beeped 24/7. This year I leap from thinking he's either not going to be here, or medicated to the extent he's in a coma, to planning a celebration for him.
I am going to plan something, small scale and something that can easily be cancelled without financial loss or much reorganising for another day.
Today is Oliver Field's final farewell/celebration of his short, but beautiful life. He was diagnosed with Neuroblastoma cancer stage 3, age 8 months. He had 4 months in remission without treatment, then in January his parents heard those horrific words: relapse. Oliver had stage 3 cancer, meaning the cancer was never in his bones or bone marrow, but he had a tumour in his abdomen. Since Oliver had the MYCN gene amplification that leads to a poor prognosis, he had the same treatment plan as Harry. In January, it was evident from re scans that his tumour had returned in his abdomen. He has had various treatments since January to try and shrink the tumour again, so it could be removed, unfortunately this type of cancer is so aggressive and with the gene amplification the cancer continued to grow under some of the treatment.
Oliver, battled with the continued support and love of his parents and older brother Sam, but very sadly lost his battle last week. Oliver is being laid to rest today and we will be attending his final farewell.
Our thoughts are with the Field family. Oliver, you are pain free now. I hope you are having the best fun dancing in the sky and you have been united with all those other Angels, whom have had their lives cut short. Oliver - forever age 2!
Tuesday, 13 August 2013
Unfortunately Harry's had a bad day. He has tried to do things this afternoon, visiting Granny and Grandad, riding his bike albeit briefly, then making a crane out of cardboard boxes, but the pain in his tummy then got the better of him and he has been sick towards the end of the day. Our Mcmillan nurse had a planned visit to see us, she was able to give Harry some intravenous anti sickness and intravenous morphine, however, he was soon sick again, and Julie, our McMillan nurse came back to give Harry a different type of intravenous anti sickness medication to try and settle his tummy. Hopefully he will have a settled night. Here are some photos to cheer you up from our holiday.
Please see the link above!
Ian completed this epic bike ride in just short of 4 1/2 days!
He didn't get much sleep aiming to get the miles under his belt as quickly as possible. He cycled through torrential rain, up steep hills, sometimes in the dark, sometimes in the sunshine, sometimes with utter extreme fatigue! He made the journey on his steel framed bike and not his racing bike due to the week prior to the event being knocked down by a 4x4 car and wrecking his bike.
The steel framed bike was not quite as comfortable and this resulted in Ian gaining grade 2 pressure sores on his bottom!
Well done Ian. Thank you!
The page is still open if anyone wants to donate.
A picture of Ian with his hair at its best!
Sunday, 11 August 2013
We managed to get away to our holiday lodge near Christchurch in Hampshire! Yippee! The holiday we never thought we would make!
Harry has been on increased anti sickness drugs and by lowering his patch again we have managed to get on top of his sickness.
I have been a driving force behind decreasing the fentanyl patches, feeling confident that when Harry experiences pain again we will increase the rate. It seems pointless giving him radiotherapy then not decreasing them, to see if he can have a little respite from being medicated so much and experiencing all the side effects that go with that.
So we set off at 6.40 am on Saturday 3rd aug and having just one stop arrive at 1.45 pm. We get our keys at 2 pm and after unpacking head to the beach which is 10 mins walk away. Perfect! The boys love the beach so much and we discover that the sea is warm enough to paddle comfortable in!
We spend Sunday pottering around and visiting places along the coast. I also realised upon getting up that I had forgotten Harry's fentanyl patches, due to be changed later in the day. I had remembered all the bottled medication, the emergency medication, but sadly not the patches! I was so cross with myself as i had organised repeat prescriptions for everything earlier in the week! I contacted the on call McMillan nurse in leeds and he contacted Southampton hospital whom have been given our details! It all turns out ok and we even get the patches delivered to our holiday home by the ward manager on her way home from shift, whom lives nearby. The nurse whom dropped the patches off just so happened to be the sister of the ward manager at Lgi ward 31, also the oncology ward! We felt blessed to have such a seamless service and it is nurses that go out of their way that make the NHS what it is. Without these nurses going the extra mile the NHS would be more on their knees than they are and it is the dedication of these nurses that try and continue to provide such a high level of service despite all the recent cuts in funding. The only error was that bad communication meant we only had been given the 25 mg patches and not the 12 mg patches as well, as Harry was on a total of 37 mg. We had thought about decreasing his patch rate again, but in the end we had to! However, the next eve the same nurse dropped off the extra patches so we had them on hand, just in case.
We've had an amazingly busy, but lovely week!
The boys have enjoyed racing each other on their bikes on the promenade, we dodged torrential rain at the national car museum on monday, with rains breaking enough for us to have a Go - Kart race!
Then since Tuesday we have had glorious weather.
We went to the Isle of Wight on Tuesday. Beautiful blue skies made us feel like we were abroad. The boys were very excited about the ferry crossing. Then on arrival at the island we went straight to the needles park. We went on a cable car down to the beach, where you can view the coloured sand cliffs. We decided to take a short boat trip to get a closer view of The Needles. The boys decided they were pirates and loved it. I got some great photos too.
We then went back to the park and whilst daddy and Harry queued for water zorbing, Callum and I headed for the coloured sand shop and filled some glass shapes with sand. Funny though that as a childhood memory of doing this, I don't remember the everlasting queuing!
We return to the sunshine just in time to see daddy and Harry do the water zorbing and capture the event on camera! Daddy was about the only adult to do it! Probably because the small pool would have been empty of water! Trying to capture a good picture, Callum and I stood close to the pool, where daddy and Harry were trying to manoeuvre these giant bubbles, but we ended up drenched by a wave of water that daddy produced! Such fun! Afterwards Harry too filled some glass shapes with sand and mummy was left queuing again to get the shapes sealed whilst daddy took the boys on some rides!
We managed to get to Blackgang Chine theme park for the afternoon too! The pirate play park was very much enjoyed by the boys with water filled cannons to spray each other with!
We also managed a short drive on the island. We had a brief look at Ventnor. A beautiful place, with cafes along the seafront. It felt like being abroad and having spent 15 mins there, I would definitely like to go back for longer. We finally got on our ferry at 7.30 pm with the sun still shining! A fantastic day had by all!
Wednesday was a quiter day. Harry was desperate to go to a small aeroplane museum, so daddy took him there in the morning, whilst I had a lovely morning with Callum on the beach. In the afternoon we trialled the outdoor pool on the site, which was heated. With the beautiful sunshine I really felt abroad! Callum loved it, but Harry found it hard and was soon cold. We head indoors, but Harry wasn't up to swimming. Even when we ventured into the splash baby pool, which was as warm as a bath, after initial excitement Harry just sat on my lap and nearly fell asleep. It is at these times that we are reminded that Harry has cancer. The comparison between the lively Callum splashing about and his elder brother lifeless, indicates the presence of the disease. Once Harry was back and dried in our lodge he fell asleep for a while.
Fortunately he awoke on Thursday well enough to visit Marwell Zoo! Yippee. We met friends their, The Kaye family. We haven't seen them in a few years as they moved to Southampton for work and well lives get busy! Their 2, Sam and Lucy really got on with our boys, which really makes for a great day out as they happily played, whilst us grown ups could have a catch up.
Harry wasn't quite himself, but had a great day and huge stamina to still be going strong at 7 pm as we went to a pub for tea after and the children found a great overgrown area that was their 'den'. Dens will never go out of fashion and make the imagination come alive. Harry said this den was a Lancaster bomber! Still mad on planes and still into airfix models. He has started a red arrow model whilst on holiday!
Callum loves animals and loved the zoo, particularly the monkeys, whom were always my favourite too!
So we come to Friday, our last day. We were debating whether to go to Poulton park or not, the home to peppa pig world! Callum had continuously seen signs for it and had seen an advert for the park on YouTube some time ago! He knew Peppa pig world was nearby! Harry awoke though with some pain in his spine. I gave him some oral break through pain relief and we had
a quiet morning. Harry seemed to perk up towards lunchtime, so we made the decision to head to Paulton Park. However, once inside and queing up for rides, Harry had no patience and was quite snappy, a side effect of the medication. He also struggled to wee again, another side effect. He also nearly fell asleep in some queues! I thought Callum would have struggled with the queues, but it was Harry whom was quite emotional at times.
Peppa pig world I would say is over rated! Great for really little children 2-3 and I know Callum is still only 3, but it seemed quite tame! I think having been to Lego land where Callum clearly loves a few adrenaline rides, we actually didn't spend too much time in Peppa pig world. It was also so very busy, but the rest of the park quiet in comparison!
We went on quite a few rides, splitting up whilst daddy and Harry go on a roller coaster that Callum is too small for and Callum and I go on the log flume and another spinning ride that Harry and daddy wouldn't like!
A good day was had and Harry livened up towards the end of the day!
On our return back to the lodge, Harry's pain had returned and I decided to increase his fentanyl patches. Particularly as these seem to create less side effects for Harry.
We were sad to leave our holiday home, as we really had a fun week and I guess completed more adventures on our bucket list for Harry.
For the majority of the time Harry has been 'the old' Harry, which has been so brilliant to see. We have felt recently that we had lost him at times, due to pain and medication, but it has done us all good to see our fun loving action hero be, well Harry!
We broke up the long journey home with an overnight stay at my sister's who lives near London.
Upon arrival they were in the process of putting up a play house for Olivia age 15 months. The boys loved playing with the boxes and once built loved playing on and in the house. Lovely to see the cousins interact and have fun together.
We have finally made it home and it is very evident that Harry is struggling with pain. This time it's in his tummy. He has tried so very hard to put a brave face on today, but he has slept a lot and is in a lot of discomfort. This is where we are filled with sadness and I really think that Harry has a lot of cancer cells in his upper body now. I will be liaising with our Mcmillan nurse in the morning and I will keep you updated too.
We are so very grateful to everyone's continued support.
We have had the best week, we could have hoped for, created many more happy memories, but I think very, very sadly Harry won't recover from this new spell of pain, but we shall see.