Tuesday, 28 May 2013

Recent photos!

Tues 28 th may

Well Harry's fun day at Swithen's Farm was truly amazing! Lots of our friends went. Even a friend we haven't seen since university in 1997, came with his boy as they have moved not too far away! We were so very touched and moved by the day. Harry and Callum had a ball. Quite a few of their Otley friends came too, so they were made up to have their friends to play with. Police cars, fire engines, minutes horses came too, entertains the children. Harry loved the police car and showed the others which button started the sirens!
The balloon release at the end was very emotional and poignant and nearly had us all in tears! Some of the balloons have landed in Derbyshire and Worcestershire!
We would like to say a massive thank you to the organisers and everyone who came whom made it a day to remember!
Harry has been in school last week. He has been getting more leg pain and has developed a very evident limp.
Harry had his Go karting party on Sunday, kindly donated by F1 Go karting in York. Harry and 11 friends immensely enjoyed the hour of racing. We then went up the Ferris wheel in York, which gave spectacular views over the city. The weather was perfect, sunny and a very blue sky! We rounded the day off at The National Railway Museum and met some of Harry's friends up which was lovely.
Yesterday - Monday Harry's pain had increased and we have had open the oral morphine. This eased the pain and Harry enjoyed a fun afternoon at The Ship Inn, in Horbury, whereby they were having a Fun Day. Harry made friends with a boy called Cameron and he sang a song to Harry on karaoke, which was so touching!
Harry awoke today hardly being able to walk due to pain. We have been in touch with our McMillan nurse re pain management and we have increased the oral morphine. Hopefully it'll ease the pain and enable us to get out and about this half term.
I have told Harry that he still has cancerous cells in his body, today Harry made the connection himself that the cancerous cells were causing his leg pain.
We can no longer deny that this horrible disease is taking over Harry's body. We came back from center parcs with hope that he would remain well for weeks or months more, but we can only take one day at a time.
All I can say is we are so glad that we have been earnestly building up our memory box for the past 2 months and whatever happens we have some fab memories away from LGI!

Saturday, 18 May 2013

Sat 18 th may

As you can see from the photos we have been having lots of fun.
Harry has been in school this week and remains well. One more week then its half term! We will be having days out and enjoying time at home. Since Harry is well at present, we don't feel so much the need to rush and go and do things. We were wanting to go away for a few days in Filey, but have decided to save doing this for a few weeks. Half term was booked up, so it would have meant taking Harry out of school again. For now he needs school and we need some time with Harry at school to get some jobs done at home. We are redecorating and making our mark on our house we have nearly lived in for 2 years. It feels good to be thinking about deciding what colour shall we paint the living room etc. it also gives a topic for conversation with friends, which is normal and interesting!
I went on a karaoke night in Leeds on Thurs and was taken aback at how Deja Vu can so suddenly hit me, not the karaoke bit, but the bus stop we got off at was right by the Merrion center, by tiger tiger bar and Sainburys. AND, you may say, well that area of Leeds was frequented lots by myself when Harry was in LGI. When Harry was in high dose chemo, I would often take a walk to sainsburys, when I had got him settled for the evening. Yes I know how to live! Well just stepping off the bus transported me immediately back to the time Harry was in LGI for high dose chemo. I also realised that it was May 16 th, the exact day a year previously that Harry went into high dose chemo and didn't come out till the end of June. I could visualise myself a year ago and remember the whole horrid treatment regime Harry was on. I could picture myself, tears running down my cheeks with Harry on my lap in severe pain as a result of getting VOD, whilst a doctor was being sort to try and get morphine prescribed. Back then the thought that the treatment would make Harry better kept us going. Now it seems it was pointless in many ways. The good thing being Harry only remembers bits of it all. I managed to contain the flashbacks and have a good night, but on Friday I felt that immense foggy feeling that creeps in all too often, due to intense feelings of grief. I could have very easily spent the whole day bawling my eyes out, but its sink or swim, so Paul and I went for a walk on the Chevin, to an area we haven't traversed for years. We remembered how scenic it is and made a mental note to take the boys there. We also went for lunch at the very reasonable Nam Jai's Thai restaurant in Otley. Feeling much better we had the energy once home to tackle our garden!
We have been overwhelmed with how much people want to create fun times for us and Paul's work are putting on a fun day at Swithens Farm in Rothwell for Harry tomorrow. BBC weather say it should be dry after lots of rain today, even the sun should make an appearance. We shall take some photos and share the day with you. I know many of our friends will be joining us. We really do appreciate everything people are doing, may the good times roll!

Photos of our center Parcs trip

Our helicopter ride over North Yorkshire!

Thursday, 9 May 2013

Thurs 9 th May

Well since my last blog, Harry has been in school for 2 weeks. He has had various aches and pains and has needed pain relief, which has had the desired effect and facilitated him to be able to play again. School have rung me a few times, following Harry complaining of pain, a bit of calpol and time out has facilitated him staying in school. Harry's teacher is working hard to include Harry to remain within the school community, which is what Harry needs, to remain as normal as possible and have routine. Following these aches and pains we kept our meeting with Harry's consultant on may 3 rd. She had said if Harry was fine we could cancel it, but we thought it wise to meet her. Though as frequently happens when a doctors appointment is booked, the aches and pains go! Harry's consultant was pleased with Harry and she said the disease can present peaks and troughs in pain until the slippery slope whereby pain is consistently present and that's when pain management becomes crucial to Harry's well being. Our consultant Sue also said that they often equated the commencement of treatment with a respite to pain, but since Harry is on no treatment, then his recent respite with pain could also be how the disease unfolds: treatment or no treatment.
Harry also had his bloods tested and the results told us that Harry's platelets have increased to 55, I don't think I documented in my blogg, but after lego land they dipped to 42. This increase is good, as if they had dipped further Harry would be at higher risk of bruising and bleeding continuously if he cut himself. 55 is still low, 100 plus is heading towards normal, but 55 is good and indicates too that the disease has not spread to his bone marrow yet. 55 is also good knowing our center parcs trip was imminent. Though we still haven't reached the magic figure of 75, meaning Harry still can't have further treatment, so still no decisions are needed and with that we breath a sigh of relief that we are not responsible for deciding yet if Harry has further treatment or not.
So, we are on our adventures again! Yey! We are at whinfell forest: center parcs. The holiday we really thought we would never have for 2 reasons. This holiday was originally booked for January 2012 pre any knowledge of childhood cancer, then rebooked for November 5 th 2012 when we thought treatment would be finished, or nearly finished, then booked again for may 6th 2013.
When we got Harry's end of treatment results in march, we really thought that Harry wouldn't be well enough to come. First if we had of put Harry through any more treatment had his platelets increased, I thought he won't feel well enough and he would have had his NG tube back to tolerate all the drugs. Or even if treatment hadn't commenced I thought Harry would be on a high dose of morphine, away with the fairies and not in a place to benefit from such an active holiday.
However, we have been amazed at how well Harry has been this week. No pain, morphine hasn't even been opened since being prescribed a month ago, in fact Harry is just progressing in every way, beyond what we could imagine 5 weeks ago on that horrific results day.
We have had an immensely fabulous time away. The weather was hot for the first couple of days and we got outside loads, sunbathed on the lakeside beach, the boys in their element making roads in the sand.
It has rained a bit too, in fact summer and winter within 48 hours, but with the huge swimming pools and slides, the entertainment continues, rounding today off with watching Aladdin.
Harry has mastered riding his bicycle and he has managed to confidently ride around the park, up and down hill. Callum has been scootering beside us on our bikes too and then at times going in the trailer on dad's bike.
We go home tomorrow and we do feel sad to be leaving this haven, where life seems normal and fun can be had in bucket loads.
We grieve every single day that we know that Harry won't continue to reach his milestones and continue to develop and Callum will lose his best friend. Although we are having some amazing adventures, perhaps this too intensifies the grief as we know by next year it is very likely that Harry won't be with us and we will be 3. The photos will be there for us to look back on, treasure and remember the good times, but the good times we know will come to an end at some point soon. I guess I am trying to say that we are trying to pack a lifetime of family adventures as a 4 into a few months, whereby most people have their families for many years to enjoy.
We have had Wi-fi whilst away and have been watching 'the village'. Joe Middleton goes to war in 1914 and during his leave home he is asked what it's really like being at war. He tells of the horrific scenes and death of his comrads, but Martha was too shocked to hear more. Joe feels alone and is aware nobody understands or wants to know the true extent of what he sees at war.
I am telling you this as we feel like Joe at times, the witnesses of one of the most horrific diseases, dealing with intense anticipatory grief, but at the same time being grateful for every day we have with Harry being well.
This journey is so terrible hard, but we are doing our upmost to get on with it and harness life!