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!

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