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 ).

2010 - March - Chemo...again!

At the beginning of March, Ashley was very unwell. He was in pain that was also sporadic. It moved from his shoulders, to the pit of his elbow in his right arm, and then also to the pit behind his knee down the left leg.  Ashley was then put on to morphine to control the pain as a result of this.


In the meantime , Ashley had his first round of Cisplatin, and Etopiside. This was given int he form of 4 hours pre hydration, followed by 4 hours of iv eptopiside, followed by 24 hours of cisplatin, the was repeated 2 more times, tottally 3 doses in one session.


Ashley remained in high spirits throughout the chemotherpay , though he was very annoyed having to be contected for 4 days, during the course of chemotherapy we had a visit from Elaine at the Thomas ball childrens cancer fund, It was ovely to see Elaine again, she very kindly came bearing a huge lego set for Ashley that put a huge grin on his face and really brightened his mood, it also was the encouragment he needed to move, the previous day Ashley was having to use a wheelchair to get about.


Somehow over night there had been a dramatic change in Ashley his pain was alot less and he was up and walking again, i had to reframe myself from bursting out in tears and hugging him ( thats not cool for a 7 year old boy lol)  wether it was the chemotherapy working , the morphine being at the right level or as i like to think the power of lego and happiness, Ashley was feeling alot brighter.


Chemo went without a hitch and Ashley was discharged on the friday, due to bone marrow diease and the chemotherapy Ashleys blood count was at a low level so he needed a few top ups during the week.


we had 3 weeks at home, and Ashley went from strength to stregth i weaned him of the morphine and he was no longer in any pain.


We decided as a boost for Ashley we would go to Lego land for the weekend before he started his next round of chemotherapy, we had a brilliant time as we split the park over 2 days we managed to do all the park, rides and Ashley didn't get to tired, on the Sunday we were joined by Ashley's Gran-dad and family and his friend Jack from hospital. It was lovely to get away even if it was only for one night, to spend time as a family and it not all being about Ashley having cancer.


Back to relaity though on the monday Ashley started his second course of cisplaitn and eptopiside , Ashley consultant was very pleased with the change in Ashley and that he was no longer in pain or needing morphine, Ashley spent his days by spending time with the school teacher, art therapist, play therapist and music teacher. on the wedsnesday the Be child cancer aware campaign had arranged for some very special visitors, Ashley was visited by 2 storm troopers from the 501st garrison, Ashleys face was a picture when the 2 storm troopers entered his room. we had a great afternoon with them, they visited the other children on the ward and they spent some time chating with Ashley.


Beofre coming home on friday we met with Ashley consultant, she told us the good news that Ashley could have upto 4 more rounds of the present cehmotherapy as he seems to be having a positive response, Ashley is booked in for a ct scan, kidney function test, full body mibg scan over the time before his next round of chemotherapy.


we are trying to arrange a surprise trip to Euro-Disney for 3 days before the next round of chemotherapy, sadly this is proving more difficult than we expected. due to Ashley's condition and being on treatment getting insurance cover is virtually impossible and the cover that we may be able to get will cost as much as the holiday. this is one of the reasons we have started this fund so we do not have to worry about Ashley missing out because we don't have the finances freely available .

2010 - February - A Shattered Hope

It has been 63 days now since we were told Ashley had Relapsed and our world was tipped upside down again.
Ashley had 2 rounds of Irinotecan and Temozolomide chemotherapy, this was hoped to clear if not hold the cancer sadly the re staging scan after the 2 rounds showed sadly the small amount of bone marrow disease that Ashley had on relapse staging had spread widely and the chemotherapy had not worked.

we were absolutely devastated, knowing treatment options at this stage are minimal and palliative care only.

Despite the spreading disease Ashley remained well in himself, Dr wheeler knew of a trial l called Aurora Kinase this is being run at the Great Marsden hospital in London, the trial seems very hopeful and is a new kind of drug for treating cancer specifically Neuroblastoma, not only dose it act like chemo in binding cells together but it also targets the mycn amplified aggressive gene that Ashley has.

we went to London to meet the professor and team that are running the trial, all looked well and they were happy to accept Ashley on the trial but he would need to meet the criteria.

Again we had another blow , Ashleys platelet blood count needs to be above 100 for the unfortunately Ashley were sitting around 20 - 30 , we had hoped it would have been as simple as giving Ashley a transfusion to meet criteria but the trial requires a natural blood count . it is a stage 1 trial this means it will be the first time it is tested on children, so they are basically testing the dosage ans side effect not so much how effective it is that would just be an added benefit for the children having it.

At this point Ashley had gone 3 weeks with no treatment and had started to get pain in his head were the mass is and the shoulders were the bone marrow disease is.

we were still at this point praying Ashley blood count would go up over the weekend before the decision would be made to go ahead with the trial or not.

On the Friday night Ashley spiked a high temperature and we had to take him in to Milton Keynes general, it was decided Ashley had an infection and it was best for him to stay in.

He was given oramorph for the pain and started on antibiotics. By Monday the pain had eased and Ashley was feeling better, But Dr wheeler wanted to keep an eye on him and transferred him to Oxford.

Ashley was kept on the antibiotics until the weds but nothing ever grew from any of the sample that were taken to test to see what infection he had so it was assumed it must have been viral.

We had a long and hard conversation with Dr wheeler regards to what happens next treatment wise as Ashley no longer could be part of the aurora kinase trial due to his platelets count.

Kate thinks there is just so much bone marrow disease that its blocking platelets production. we had 3 options
1, we did no more,took Ashley home and managed his pain as best as they could and enjoy the time we have together.
2, we try palliative radiotherapy to the areas that have pain and oral eptopiside chemotherapy to see if this hold the cancer for a while ( this is what most children whom relapse get put on , but i have always though of this as a last result drug as for most children it dose nothing)
3, we give it one more try, with another mix of chemo and hit it hard.

Dr wheeler has spent many hours discussing Ashley with other UK Dr's and professor's to see what else we could try. they all feel that Ashley best chance of clearing any of the spreading disease and stopping it in its track is an old protocol of high dose cisplatin and etopiside.

this used to be given over 5 day continuous fusion at high levels. Ashley is not having this as it is agreed that Ashley physically at present could not withstand another full high dose treatment so they are halving the dose and giving it over 3 day, this is what we had agreed to try.

BUT on the weds evening ......

Ashley's right arm started to feel tingly the it went numb and weak he could not lift it or grip anything.

the on call reg was called to the ward straight away and she spend half an hour with Ashley doing test, movements , checking his eyes. She said it is temporary paralysis of the arm and this is most likely due to swelling in the brain around the mass. Ashley was started on high levels of dexamethasone. this would help reduce the swelling.

By the morning Ashley's arm was a lot better and he had feeling in it again, though it was still quiet weak in control, Ashley had a C.T scan and this showed the mass was a little bigger though not much but there was swelling around the mass and there had actually been a small bleed. The mass is very close to the part of the brain that controls the right side of the body. if the numbness had happened an hour later Ashley would have been asleep and we wouldn't have known till the morning and it could have been much, much worse.

So the chemo that was planned to start on the following Monday was put on hold, the brain mass needed to be dealt with asap.

on the Friday Ashley went to the Churchill hospital for radiotherapy to the whole brain. Due to the high levels of steroids Ashley was in a very bad mood this day and did not want to co operate. it was decided instead of doing lots of little radiotherapy sessions that they should do just 2 higher level ones a week apart. so Ashley had his radiotherapy mask made.

he had to lay on a bed while they put a warm floppy plastic sheet over his face and then wait for it to set and mould to the shape of his face. Ashley didn't want this done and was very upset, Ashley then had a x ray and ct done for placement of where to target the treatment.

An hour later Ashley had his first session of radiotherapy to the brain, it was horrific I'm not going to lie, We had to pin Ashley with straps then the mask is fitted and its bolts to the table. we devastatingly had to leave Ashley lying screaming and crying on the table for 5 minutes while they did the treatment.

Ashley was kept in over the weekend for observation and had to have sevraul platelet transfusions as they wanted to keep his blood levels above 100 to prevent a further bleed and to help the current on clot.

Ashley had a good weekend and his arm was a lot better so we were able to come home.

Ashley had a check up on weds, sadly Ashley has started getting pain again in his left arm and right leg, it seems to come and go and varies, but these are both places he has bone disease :(. we have now been given oramoph to manage the pain at home. despite the pain Ashley is still well in himself, still smiling and still playing lego :).

Ashley had is second dose of radiotherapy on 25th Feb, he was so good and brave, he laid there as still as good be with the mask on and just listened to his harry potter CD. we are so proud of him.

Later that day he had a check up with Dr wheeler and she is also pleased that the radiotherapy is working, Ashley no longer has a head ache, his arm movement is back to normal and the black/blue bruising that had been around his eyes for 3 or 4 weeks now had faded to the point you can hardly see.

On 1st march 6 weeks since his last dose of chemotherapy Ashley will start the 3 day chemo, we are praying with all our heart the cancer responds and it clears some of the disease, Ashley can go onto have the A.K trial or mibg therapy if his bone marrow is clearer and has platelets.

please , please can everyone take a moment to think about Ashley and to say a little pray for him.

thank you Ashley's mum xxxx

Ashley's Journey To-Date.

Ashley's fund has been created to provide Ashley with the best quality of life whilst he is fighting against a form of cancer called Neuroblastoma for the second time.

All funds raised will go towards equipment, alternative therapies and services to provide a more fulfilling and better quality of life in the uncertain and undeterminable time left with our Son, Ashley.

Ashley, our son, is a very happy and cheeky little boy. At the age of just 5 years he was diagnosed with stage 4 mycn amplified neuroblastoma on the 9th June 2008.

Neuroblastoma is an aggressive childhood cancer. The disease is caused by abnormal neuroblasts or nerve cells which are special cells present in babies and children that help create the adult nervous system.

Tumours originate from the sympathetic nervous system, which runs from the neck to the tailbone and can spread to other organs, and bones and (bone marrow). If the cancer is diagnosed early, surgery and chemotherapy can be curative, but in 70% of cases the disease is not diagnosed until it has already widely spread, unfortunately this was the situation with Ashley’s case.

Upon diagnosis Ashley had a 12- 10 - 8 cm tumor above his left kidney and wide spread disease to the bone marrow in legs, hips, shoulders and 1 arm.

Ashley’s little body started an incredibly hard battle to rid the neuroblastoma in it, Ashley under went 70 days of chemotherapy called RAPID COJEC a mixture of Vincristine, Carboplatin, Etoposide, Cisplatin and Cyclophosphamide. The neuroblastoma did respond, halving the size of the mass and clearing 95% of the bone marrow, but unfortunately there were still 4 small ‘hot spots’ that were visible on scans.

Ashley then went on the have 4 rounds of a harsher mix of chemotherapy called TVD (Topotecane, Vincristine and Doxorubicin). This helped clear some of the cleared the secondary cancers which were wide spread areas. Ashley then underwent a complex operation to remove the remaining tumor, a stem cell harvest, high dose chemotherapy Busulfan and melphalan at dangerously high levels which in it self was is life threatening. This made Ashley very ill and wiped out any immunity that was still clinging on. His immunity could now take years to recover to the same as that of the average child.

After high dose Ashley had 14 rounds of radiation to the abdomen area, he then went on to start a six month course of differentiation therapy this is used to turn immature neuroblastoma cells, into mature cells that die.

Devastatingly on the 22nd December 2009 just before Christmas and Ashley’s 7th birthday we were told that a routine 6 month check up has revealed that Ashley has relapsed despite all the treatment he has already gone through.

The routine scan showed Ashley has a 1 - 2 cm lesion to the brain and neuroblastoma has re-established itself within bone marrow.

There are no words to describe how sad and worrying this is. Currently there is NO viable proven treatment or protocol in the UK for a relapse. The doctors in the UK can only do there best with the treatments and facilities that they have.

Please, please help support Ashley in what will be the hardest battle of his life.