Wednesday, 21 July 2010

A leap of faith

July

A new hope, by whether it be fate or a miracle.. a friend whos child is being treated in Germany kindly did some probing regarding an available treatment for relapsed children. Within days and many correspondence with a very kind hearted professor (Prof. Lode), Ashley had been accepted onto a new trial in Germany to commence ASAP.


On the 7th july, grasping this opportunity with both hands, we all flew out to Germany to start another path of Ashleys journey with his fight against this monsterousley aggressive cancer raging inside him.


Ashley had 3 days in extensive testing and scanning (restaging the current statwe of the disease with their own equipment), we had the weekend free to explore the local area. Greifswald is a small town, in far Northeastern Germany, close to th Baltic coast. The weather has been very hot, and we took a stroll along the harbour and sat on the beach for a little while. Back at the parent house on the sunday night Ashley developed a raging pain in his hips we knew immidently what this was and took him straight back to the hospital. Ashley was admitted and started on pain management/therapy immediately!.


Despite the pain the Proffesor was keen to push on with the trial, and explained Ashleys pain was merely being kept at bay and changing from a hard hitting chemo to an aculmative one means ashley cancer in theroy will get a bit worse befor gettng better.


As always with Ashley, nothing seems to be straight forward. Ashley started the inhbitor therapy as planed on monday the 12th this is given for 5 days but during this time Ashley became constapated and had sickness, then his left leg began to swell as well.


They did and ultra sound and it showed well... alot of poo! Also following the previousely mentioned scanning (which ioncluded an MRI scan) revealed that the tumor in his abdomen is restricting the vessel that supplys blood flow to the left leg causng the swelling and fluid retention. He had a few days of a special drink to help with bowel movments which had the desired effect (perhaps a little too well some times!).


Ashley continued onto the second week of treatment, which consisted of 5 days of chemotherapy. Ashley is starting to pick up gradully - eating a bit more and is generally in good spirits.


The staff are wonderful and have alot of time and patience with us all (inlcuing our lack of German), things are done quiet differently here, and in a good way, the doctors, even the proffesor administrates the chemotherapy and blood transfusions themselfs and are very cautious.


All the doctors speak English and most of the nurses speak some English. at times it is a bit difficult with communication, as I dont speak any German (thank god for Google Translate, if all else fails!).


We have met 2 other families from the UK reciving treatment here, Ashley is 1of 4

The treatment Ashley is reciving in Germany is not free by anymeans, nor being paid for via the NHS or PCT. We are having to fund this ourselves. Thankfully we had £50,000 raised and was able to start treatment straight away. Unfortunatly this is only 1/4 of how much the treatment is proposed to cost as a whole and this is only an estimation by any means and may be more depending on what ma crop up unannounced. Any donations are so hugely appreciated (and desperately needed to try and save our Ashley's life!) and you really will be making a difference, every penny really dose count, you can donate at
http: https://www.bmycharity.com/V2/ashleyhydeappeal
Ashleys fight is being supported by FAN.


catch up, more ups and downs

It's been a really long time since I have updated Ashleys blog and I do appologise.

April, May, June.
As always the past few months have been very up and down.
The joy of Ashley being pain free sadly didnt last very long. Whilst on a day out with FAN to Legoland Ashley developed pain in his legs, we had another reveiw with Ashley's consultant and again we had that hard conversaton wether to continue with treatment or just manage the pain. Ashley's dad and I have always lived by the phrase "were there is life the is hope", so we continued with treatment. this time of a mix of cyclophosamide, topitican and this time, also eptopiside.


After the first round we had a very special night out; Ashley was presented with a little stars bravery award from the liberty rose trust. It was a lovely night and Ashley had his award presented by Darth Vader and the 501 Garrison (The storm troopers that visited him in hospital at Oxford previously). However the celebration was cut short as Ashley became unwell the following morning, we returned home. Blood tests showed Ashley had developed a very nasty line infection, which thankfully they managed to get on top of and clear. Ashley then had another 2 rounds of this mix of chemo it reduced the pain in his legs. in may/june we enjoyed a day at Drayton Manor,a starwars convention at the leiste space center, a weekend at Alton Towers with FAN (Families Against Neuroblastoma) and Ashley was able to go swimming as FAN very kindly purchased a special dry suit to wear in the water :), a day at Gullivers Land, Post Pals chidrens party and another weekend at Alton Towers with FAN, spending time as a family enjoyng life.


Recent tests showed that Ashleys bone marrow still has alot of disease, more than the previous. Though Ashley has not had cancer related pain for some weeks now (cross fingers, touch wood etc ).