Updates
February 2010
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 palative care only.
Despite the spreading disease Ashley remained well in himself, Dr Wheeler knew of a trial 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 does 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 trial, 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 natrual 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 and 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 where 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 transfered 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 Kinease trial due to his platlets count.
Kate thinks there is just so much bone marrow diease that its blocking platlets 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 palative 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 thought of this as a last result drug as for most children it does 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 proffesor'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 eptopised.
This used to be given over 5 day continuous fusion at high levels. Ashley isnt having this as it is agreed that Ashley physically at present could not hack 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 ......
Ashleys 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 tests, movements, checking his eyes. She said it is tempory paralis 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 Ashleys arm was alot 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 moring 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 delt with asap.
On the Friday Ashley went to the Church Hill 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 didnt want this done and was very upset, Ashley then had a x ray and ct done for placement of where to be radio'ed.
An hour later Ashley had his first session of radiotherapy to the brain, it was horrific im 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 several 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 alot 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 layed 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 fadded to the point you can hardly see.
On 1st March 6 weeks since his last dose of chemotherapy Ashley will start the 72 hour 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 platets.
Please, please can everyone take a moment to think about Ashley and to say a little prayer for him.
Thank you, Ashley's mum xxxx
December 2009
I was planning for this update to be all about our amazing holiday to Disney Florida, but am going to have to side track away from that as we have had some upsetting news.
Last week Ashley under went a week long of testing until yesturday it was all looking good and result were coming back normal or clear but we were told yesturday the final 3 results the bone marrow and trephins are all clear which is excellent news.
Then came the devastating news his vma urinary test is inconclusive and the very important mibg scan was showing 2 very faint "hot spots" one on the skull one on his neck.
It is possible Ashley has relapsed :(
Though the scans and test are not clear enougth to say either way as there are several things could cause this and it could even be a false positive scan.
This is obvs not the news we were hoping and praying for. Tommorow Ashley will undergo more testing please pray for us that they come back normal and points to Ashley still being clear.
Sadly on the 22nd December it was confirmd Ashley has relasped. This was devastating news as Ashley is well in himself and has no symptons so was not expected, if it wasnt for a routine scan we proberly wouldnt have know for another month or so.
It has been caught early which is good, but it is still back.
Ashley has a 12mm lesion to the lining between the brain and skull, it is small and at present not touching or pressing on anything and is not affecting Ashley in any way. Sadly as well as the lesion Ashley aslo has a positive bonemarrow result, meaning it is also back in the bone marrow.
Due to there being NO protocol in the UK for a neuroblastoma relapse , Jamie and myself have had some very very difficult choices to make in which treatment options are best for Ashley. We trust Dr Wheeler greatly and she has always guided us and done the best by Ashley.
Ashley had his first course onf chemotherapy Irinotecan and Temozolomide today, this consited of Ashley swalloning 2 temozolomide tablets followed a hour later by a 1 hour iv infusion of irinotecan.
It was decided the best option the UK can offer is to start treatment as soon as possible of Irinotecan and Temozolomidescan chemotherapy, followed by radiation after 2 rounds of chemo and see what has happened, hopefully the bone spread will have reduced and lesion shrunk.
In the meantime we have started the ball rolling on getting Ashley a consult at the Memorial Sloan Kettering hospital in New York, where they have several protocols for neuroblastoma relapse.
One of the options of treatment is 8h9 therapy, a treatment for brain relapse and also the 3f8 antibodies. Unfortunately these come at a huge cost, a consult alone will cost $5000 and we will need a deposit of $350,000 to secure a place for treatment.
Please help anyway you can whether it is sharing Ashleys facebook page with fb friends and rasing awarness or making a small donation to
http://www.justgiving.com/ashleyhydeappeal1
Every penny really does count.
Ashley sat at his bedroom window on christmas eve and asked father christmas if he could have one more chance to be ok again.
Please help Ashley to get his wish.
September
ON 7th sept Ashley returned to school, He is really enjoying it and being with his friends, he missed them soooo much when he was to poorly to go to school, though by the end of the week he did becoming quiet tired so has been doing a few full days and a few half days. Were very proud of how well he has settled back in.
At present Ashley remains well, for now and for how long no one knows, we pray, hope and wish with all our heart Ashley will be one of the lucky ones and remain clear and cancer free, but will statistics and time against us we need to be prepared for if the worst was to happen. Please help Ashley any way that you can, make a donation, sponser a event have your own event.
August
Augst was a very busy but enjoable month, we attended a very special bbq at a an oncology friends house and meet lots of our other oncology children and their families, this was the first time we had meet other NB children, it was a lovely day and so very special.
we had a day out to thorpe park with oxford hospitals childrens oncology ward, a very fun (and wet) day, We all enjoyed the rides and it was lovely to see the other children and families from oxford.
we also attened the starlight popham airfields day for special children. it was a magical day were Ashley got to a helecopter, an aeroplane, hover craft and ride on the back of a harley davidson motorbike how cool. It was an action packed day, I would like to thank Linza corp ( max's mum) not just for her and her wondeful familes company on the day but for also arranging for us to go. xx
August also brought a very special meeting with baby Joshua Deller and his mummy Amy , it was so lovely to meet them and joshua is so adorable,They came to visit us as a very special man called anupam and his friend dave came to see Ashley and Joshua and we prayed for heeling and for the diease to be gone. Thank you Anupam and dave for visiting xx.
On thursday 27th aug Ashley was back at oxford for his monthly check up and tests a little early this time as we were going away the following monday. Ashleys check up went very well his consultant was very pleased with how well he is doing, Ashley vma and blood test remain clear and his blood test was very pleasing showing that his electrolites and genral count are almost back to normal ( of that of the average).
Whist at Oxford we enquired about Ashley having extra stem cells taken, if Ashley was ever to relapse the only treatment that could be offered in the uk, is mibg therapy this is a harsh treatment and requires a stem cell rescue after, unfortunatly it doesnt always clear in the first attempt but more tries would require another stem cell rescue and at present Ashley only has one bags of cells. So as precution and to give Ashley the best chances if he did relapse with would like more cells taken. Unfortunatly this is not standard protical so the nhs will not pay for it but are happy to do this privatly but at a cost !!!.
We had a lovely holiday at keldy forest in yorkshire, This was a very special holiday we stayed in log cabins with Ashley uncle wayne ( mummy's brother) and his wife ando who were visiting from australia were they live. Ashley's other uncle dylan ( also mummy's brother) and his daughters jasmine and megan were also on holiday with us but thats not it, Ashleys grandma and grandpa and great nanna and great grandad were also there it was truly big family holiday, whilst on holiday Ashley's daddy and grandpa celebrated there birthdays it was grandpa' big 60 hehehehe. Ashley really enjoyed all his extended family being together, seeing his cousins and visiting lots of local attractions, scarbourogh and the york dungons ( very scary lol).
July
Well the summer is here as are the school holidays, We enjoyed a lovely family holiday away to bournemouth, a thousand thank you' s to the thomas ball childrens cancer fund.
We had a lovely time and it was the first time in 16 months that we have been able to freely enjoy ourselfs as a familiy and not have to worry and panic over every little thing that Ashley did. There was no worry about if he was to be amoungst a crowd, or touching services in caise he caught something.
It was the most wondeful thing to see Ashley swimming (wooho no hickmen line) , running, jumping climbing and doing things like any other little boy and not have to worry about the hickmen line or him hurting himself bescause his platlets were dangerously low.
We spent most day on the beach, went to a sealife centre, played mini golf, went on a boat trip, adventaure them parks, it was a fun filled holiday with the most wonderful memories made.
On monday 3rd aug Ashley had a scan of his abdomen, blood and vma uirine test , these all remain clear thank god xxx Ashley also had a check up with the doctor before starting his 3rd course of cis retnoic acid.
Update June/July 09
Ashley remains very well and has completed the first cycle of cis retinoic acid, he has tollerated it well and is managing to swallow the tablets with ease.
Unfortunatly as predeicted Ashley did develope mouth sore and cracked lips with it, though it did clear with in the week with alot of vit e cream , vasaline and aqurois cream.Ashley has also developed peeling of the skin over his face, hands, elbows and knees, it not sore just peeling once peeled it clears it looks worse than it actually is. Ashley is quiet amussed by this and say he's like a snake shedding its skin.
Ashley's blood count is still a bit up and down but he hasnt needed any blood support. School unfortunatly has been a bit hit and miss over the past months due to various illness going around, but when not at school Ashley has been having home tutoring.
On 6th july Ashley had his firat 1 month check up, the doctors were very please he seems to have endless amounts of ongoing energy and is slowly putting weight on. Ashley had a ultra sound scan of his stomach ( were the main mass was) and this still remains clear, he also had a vma urine test and special blood test the both remain at normal level which is very reasurring.
Whist mid check up Ashley (rather impolietly) interupted the consultant and ask " when are my wiggles going to coming out"?, they then had a talk about how blood will be taken with no wiggles though Ashley isnt happy about the thought of having to have needles he was adiment he wanted to have the line out soon as possible.
So after Dr wheeler had finnshed checking Ashley over she went to look at the operating lists, we were expecting her to come back with a date for a couple weeks time but she came back and said can you be here for 7.30 am tommorow eeeeeeeeeekkkk.
On the 7th july at 11.40am Ashley had his hickmen line removed.
Ashley being Ashley and not being able to do anything straight forward lol had a small bleed after surgery, but this settled with pressure and scabbed over a few days later.
Ashley is over the moon to be wiggle free and in his words "normal again" on saturday the 11th july we had a long play in the spa pool, this was ther first time in 16th months that Ashley had been able to get fully wet.
On the 12th july 09
My cousin Christoper boult, a friend Kriss tottman and his bussiness partner kieron croin very kindly gave up there time and energy and took part in the 10k london run for Ashleys appeal, it was a great day and we all went to watch and support the runners. if you would like to sponser them you can at:
http://www.justgiving.com/10krunforashley
and
http://www.justgiving.com/chrisboultruns4ashley
I would just like to sat a huge thank you to the guys for running, together they raised just over £2200 which is amazing every penny really dose count.
On the monday morning Ashley had developed a limp and it was still there on tuesday 14th though it wasnt hurting as much , I was very worried as a relapse can be anywhere and a achy limps isnt good. I phoned the hospital and they thought it was best to have it looked over so I took Ashley to our local hospital who did some tests on him and they were satisfied he just had a strain proberly caused from over doing it on the bouncy castle at the school fete on saturday.
On Weds Ashleys leg was alot better and he went to school in the afternoon, This was quiet an emotional day for me as the events of his leg had really brougth it home again how quickly things could change and how the threat of a relapse is alway there.
Unfortunatly on thurs 16th july i had a phone call from school to say 2 children in Ashleys class had come down with chicken pox unfortunalty Ashley had come in contact with 1 off them, as Ashley immune system is still weak from the high dose chemotherapy and stem cell treatment, getting chicken pox could make him seriously ill, so we were back at our local to have a zig injection this should prevent Ashley from getting chicken pox and will cover him for the summer holidays.
Ashley is mid way through is second dose of cis retnoic acid, i had hoped the side effects wouldnt have been as bad this time round, but again he has cracked sore lips and peeling skin.
We are going away for a week to the new forest/dorset this coming weekend thank you so much to the thomas ball childrens cancer fund for providing the break, Ashley is counting down the sleeps till we go and is very excitted.
15th May
Firstly i would like to apologies for not updating the website sooner unfortunately we have become victim to nasty extremist hackers that seem to have nothing better to do than destroy a sick child’s website. so i do apologise if anyone saw some upsetting images this is nothing at all to do with us. The site has been hacked 3 times.
Ashley’s blood count has remained stable with only needing 1 transfusion since my last entry.
Amber celebrated her 2nd birthday on 26th April we enjoyed a fun filed family day out at legoland, Ashley loved all the rides, large figure and mini world and most of all the shop.
The next day however we were brought back to reality with Ashley having a double bone marrow asperation. ouch!. followed by a week long of tests. Ultrasound scan, vma urine test, gfr kidney test and mig scan over 2 days.
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The following week we recieved the very upsetting and sad news, that Jack Brown had lost his long and courageous battle against neuroblastoma. Jack faught so hard. Although we never got the chance to meet Jack in person he was very very dear to us and greatly touched our hearts.
Yvonne and Richard, Jacks parents never gave up in hope or searching for a cure.
We have so much to thank Yvonne for, she has been a great voice of wisdom and support and without her we would not be fundraisng for Ashley.
May Jack now be at peace.
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On the 5th of May Ashley started a 14 day course of radiotherapy over 3 weeks at the churchhill hospital in oxford, they are a really good team and are somehow managing to tame Ashley and keep him still long enougth which isnt an easy job.
On the 12th May we received the most wonderful and amazing news the test results.
Bone marrow asperations and trephines - both clear
Mibg scan - clear
Ultra sound - clear
vma - in normal range
grf - normal function.
Ashley has now reached full remission and is NED.
We have to have hope and faith that Ashley will remain this way, though the threat of a relaspe will always be in our minds.
Today 15th may Ashley is day 9 of radiotherapy as yet he has had no side effects.
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On June 28th we are holding a fundraising Heoes and Villians disco night at bistro live milton keynes.
The night will include a 3 course meal, quizzes and raffles and a all decades disco. though Ashley wont e able to attend as it is adults only he has asked for it to be fancy dress themed Heroes and vilians.
Tickets are only £15 each
for more information please email me at angelfeathers81@hotmail.com
The more people that attend the more money we will raise.
8th april.
The past couple of weeks we have enjoyed at home.
Ashley has remained well and in high spirits. He Still is having twice weekly reveiws at oxford. (due to Ashleys very low immunity and the high levels of infectious paitent Ashley is not to go to our local hospital unless in an emergency).
Ashleys blood count seems to be starting to recover as the number of transfusions he is now needed is getting less.
On monday we went to church hill hopsital in oxford to meet the radiation team and discuss the process, Ashley will have 14 days of focussed radiation to the left uper abdomen area.
Ashley also had moulding impressions done of his ears ready for hearring aids, unfortunatly as a side effect to the chemo Ashley has grade 3-4 toxcity and lost his high pitch hearing,though this is in the low range of loss it does effect him when in busy surrounding such as school.
The wheels have been set in process for Ashley to have home tutoring untill his blood count is fully recovered, finnished radiation and safe for him to return to school.
Ashley and Amber are both enjoying the warmer sunny weather spending alot of time playing in the garden.
Home and well - 20th March
We are overjoyed that on the 17th march Ashley was declared well enougth to come home, After only 4 weeks which is amazing in my books.
Ashley is very well and bouncy and is back to chasing his little sister Amber around the house.
Ashley remains on a few oral medications and is having twice a week reviews at oxford for the time being and is still needing plalets transfusions every few days.
Unfortunatly Ashley came in contact with a child who has chicken pox (in hospital) So had to have 2 nasty injections yesturday to try and prevent him from getting it, we will be keeping an even closer eye on him than usual.
Ashley like myself is very, very happy to be home and spending time together as a family.
In July an old school friend Kriss and his college Kieron will be running the london 10k marathon to help raise funds for Ashley, please sponser them if you can.
www.justgiving.com/10krunforashley
The amazing Ashley - 14th March
Shortly after my last entry Ashleys neutraphil count did crash to 0.00 as expected.
Ashley was isolated on the 1st feb and did become poorly, he developed a very sore throat to the point he could hardly open it and was being sick sevral times a day.Ashley was also very tired.
On the 2nd feb it was decided to put Ashley on a low dose continous morphin infusion to reduce the pain, antibiotics to aid in prevention of infection and tpn for nutritional supplument.
Amazingly after only 5 days Ashley began to bounce back, his mouth and throat sore were heeling, the sickness had almost stoped and he was feeling alot brighter to the point he was teasing the nurses and having school lessons. He even started eating small amounts.
By the 10th feb his neuts had bounced back also up to 2.4 (with the help of g.c.f.s) the morphin and antibiotic were stopped and the isolation rules were relaxed.
Ashley is still needing to be supported by plalet transfusions every 3 - 4 days as he keeps getting nose bleeds this will proberly continue for another week or so till his stem cells devlope into bone marrow engouth to hold a stable blood count.
Ashley was reveiwed today, the tpn will stop on monday as he is almost eating normaly again and if he continues to do so well he will be able to go home next week.
Thank you to everyone who has send well wishes and has helped us through this difficult time, My Parents and Jamie's mum for juggling the care of Amber when Jamie has had to work.My parents and granparents for the many, many parcels that they have sent to Ashley over the past few weeks to keep him occupied.
Thank you to the many people at post pals for sending such lovely cards and a huge thank you' to Elaine and Trevor from the Thomas ball fund for the lovely gifts they sent to Ashley.
xxx
High dose chemotherapy - 26th Feb
Over the past week Ashley has undergone high dose chemotherapy, which has envolved 16 doses of Busulphan over 4 days and 1 dose of Melphalan.
At present Ashley is still well, and has had minimal sickness.
Ashley had the first of this stem cells put back in today. This is being done over 3 days due to concern for the product that the stem cells are frozen in being quiet toxic and can make people ill. So to be on the safe side it is being split over 3 days rather than given back in one go.
Unfortunatly the stem cells pong quite a bit when going back in, and Ashleysmells of very sweet sweetcorn, hopefully this should only last a few days.
Ashley's blood count has started to drop and when it drops below 0.5 he willbe isolated. He is also likley to become poorly and we have been told to expect him toget severe mouth sores and sickness; also he might stop eating.
If this happens he will need to be supported via tpn a nutritional supplement.Ashley seems to have a knack of bouncing back very quickly and we hope thiswill be the case this time round. x
12 Feb 09
Sorry its been a while since wriiting.We have just been enjoying sometime at home as a family;its been reallynice to have everyone together.
Ashley is very well and has spent the past couple weeks as always, playingIndiana Jones and whipping/ tying up his poor little sister Amber.
Ashley has recently taken a interest in starwars (which Jamie is very pleasewith) and quite conveniently daddy already had the box set;so Ashley and Jamie have been spending time together watching the films and playing the lego game on the p.c.
The high dose chemotherapy has been put back until the 18th February,Something we were not to happy about, but have no real choice as Ashley's blood levels are irratic and the ward staffing levels similar.
Im very happy to have the extra time at home though and a bit more rest timefor Ashley.
Fun run - 1st Feb
We were overwhelmed by the amount of people who showed up to ashleys family fun run and braved the very cold and windy weather.
Thank you everyone that came and to everyone that has sponsered.
We raised £542 in cash donations and £670 on justgiving
(you can still donate via just giving for another 30 days)
http://www.justgiving.com/ashleyhydefunrun
It was a really good start although they is a long way to go to be able to take ashley to america for the antibody therapy.
Future events are being arranged.
Results - 28th Jan
On monday we had a meeting with dr wheeler.
I left the meeting with mixed emtions.
We had the amazing news that the biopsy of the tumour removed showed no evidence of living cells and was a dead tumour.
Bone marrow results also remained clear of any neuroblastoma cells as did the vma test.
The grf test showed that Ashleys kidney function remained normal.
So medically there is nolonger any detectable evidence of cancer.
We then had a very hard and frank discussion about high dose chemo, we were given the opertunity for Ashley to have melphalan alone or combined with busulfan. The side effects from both drugs can be very harsh and even deadly so the decision of which chemo Ashley should have was not made lightly.
Today it was decided It would be best for Ashley to have busulfan and melphlan combined BU/MEL the side effects are alot harsher than the melphlan alone but in the long run it will give Ashley a better chancer of being cancer free for longer.
Ashley will start hi chemo on 11th feb, Ashley will be in isolation from the time his count drops till when it recovers this is expected to be a length of 4 - 8 weeks.
The next couple weeks we plan to spoil Ashley and 'fatten' him up as most children suffer from digestive problem through hi chemo.
Good week - 24th Jan
We have been enjoying a good week at home together as a family something that doesnt happen that oftern.
Ashley is very well and has so much energy which is great, to think last week he had a major operation you wouldn't believe it as he dashes about in his indiana jones costume without a care in the world.
Ashley scar from the operation is healing well and his blood levels seem to be quiet good too.
Ashley is hoping to attend a party this sunday, of a little friend of his Aiden who we met at oxford hospital.
On 31st jan 09 there is going to be a family fun run/ walk at willen lake, milton keynes at 2.pm to help raise funds for ashleys appeal, if you would like to attend or sponser the event please see
http://www.justgiving.com/ashleyhydefunrun
I would like to thank an old schoolfriend of mine Corina for arranging the whole thing, thanks babes your amazing.
Operation - 22nd Jan
The operation to remove the main mass in Ashleys stomach was on the 14.1.09.
The operation went very well they managed a complete resection of the mass plus removal of the adrenal gland.
The left kidney has been left whole, over all the surgon was very pleased and said that the chemotherapy had worked very well in reducing the mass to 2 small slithers, the sugery was completed in less than 2 hours we were expecting it to be alot longer.
Ashley was obviously very sore and unhappy after surgery
The first thing he mumble after surgery half asleep still was 'why is there a tube in my nose?'. not a happy bunny.
Thursaday was long and hard Ashley had an epidual for paine releif, but due to this he needed a cathiter and was not inpressed with that at all or being on th ecg machine throughtout the day and night.
The tubes and wires were removed on friday morning and Ashley was transfered back to karmans ward (A SECOND HOME TO ASHLEY LOL, HE WAS MUCH HAPPIER).
Unfortunatly through out the day Ashley started being sick, the vomit turn green WHICH ISNT GOOD and poor Ashley had to have another ng tube put down to remove the green bile (this should have come up with the first tube straight after surgery but didnt.) Ashley also had to have and xray in the middle of the night as there could have been an obstruction causin him to be sick.
The xray revealed that Ashley had a blocked bowel.
Ashley had sevrual unplesent medications in a not so pleasent place to sort this problem, once this problem was solved Ashley felt much better.
Soon enough Ashley was up and running around, eating and drinking as normal.
We are so proud of our brave soilder.
We have a meeting on 26th jan to get the biopsy results of the tumour and to discuss hi dose chemo.
Another angel - 11th Jan
This weekened we had of some very sad news that Jacob Marsland passed away peacefully at home with family and loved ones on friday.Jacob had faught neuroblastoma for over 2 years, he was a very brave and strong little boy.
We would like to offer are deepest and most sincere condolences to nicky, anthony and family at this very difficult time.
May Jacob rest in peace.
10th january test results
On 9th jan Ashley had a mri scan and then we had a meeting with dr wheeler to discuss the results of all the tests that he had undergone during the week.
Unfortunatly Ashley decided he was'nt playing ball on friday and moved all the way throuh his mri scan so he is now going to need a ct scan on tues 13th.
Our meeting brought some very good news and long awaited finally after 6 months of chemo Ashley is now free of secondary cancer the scans showed there was no uptake of dye on the mibg scans other than the main tumour in his stomach it is clear in all wide spread areas hips legs and arms. I can not begin to tell you of how releifed we are feeling and hpw much it has given us a new lease of hope for Ashley.
The surgery will go ahead as planned next week, high dose chemo is expected to start 2nd Feb.
I would like to say i am thinking greatly of jack brown and his family, jack suffered another relapsed just before christmas, unfortunatly jack has had alot of treatments now including what america can offer. jack and is mum are on there way out to canida today for one last chance of beating this horrible diease. i hope with all my heart they find a way to help jack. i would like to thank yvonne for all her help and advise.
Anxious times ahead - 4th Jan
The 5th january to the 9th january brings restaging again, this is to re asses the stage of the cancer but to determine this it means Ashley undergoing alot of tests within a short time span.
Test as follows,
Monday - double bone marrow asperations and trephins echo of the heart
Tuesday - hearing screening and g.f.r. - kidney function test.
Weds and thurs - Mibg scan this scan is very important to determine the positoning of cancer within the body,
Early weds morning Ashley will have canular fitted in his hand as the dye used for the mibg scan cant be put through is hickmen line. Once the dye has been put through 4 hours later ashley will have a scan this is head to toes and will take about an hour (depending how well ashley lays still)
The scan is then repeated 24 hrs later.
The dye sticks to all the neurblastoma cells within Ashleys body which then highlihts the effect areas ( we are praying this is less than the last scan)
Friay 9th - Fullbody mri scan ( this has now been re arranged 3 times due to the fact ashley does not need to be sedated, if he can lay still we see no point in sedating him espcially as he tends to take a very long time to come round from sedation.)
We will hopefully find out most result by tues 13th January.
On tuesday13th january Ashley is being admitted to hospital for the operation to remove the main tumour in his stomach this will take place on the 14th January.
Celebrations - 4th Jan
Ashley finnished chemotherapy on christmas eve.
We were woken early christmas day by a very excitted Ashley, we meanly made him wait till Amber was awake before he could go and open his presents although this wasnt long as the noise of Ashley shouting ' i just cant take it anymore i neeeeeeeeeeed to open my presents' awoke her.
We had a lovely lunch at grandma and grandpas house and then in the evening family came to use for a tea.
Unfortunatly Ashleys bloods crashed and he needed a blood and platelet transfuion during the festive period.
Ashley celebrated his 6th birthday on the 30th December.
We would have like to take Ashley bowling and to the cinema unfortunatly he was neutrapinic and we could not risk it so we will do this when his neutraphils pick up.
So we settled for a party lunch with family in our local pub (who very kindly let us sit upstairs as it was empty and ashley would be away from harm).
Ashley recieved so many wonderfull gifts and presents over christmas and his birthday and has enjoyed greatly playing with them.
Thank you so much to everyone who helped make these occaisions extra special.
19th Dec
The magic injection of gcfs worked and Ashley's count went up and up to 8.1 neuts so chemo started yesterday we are hoping this will be the last course of tvd chemo he will need.
This round of chemo will take us up to Christmas eve but at least we will be home Christmas day.
The week of 5th january brings alot of test :
mri, mibg over 2 days gfr, heart echo, hearing test , vma urine and the dreaded double bone marrow.
The operation to remove the tumour in Ashley's stomach is booked for 13th January.
17th Dec blood count problems
In my last entry i wrote of Ashley having a viral infection and his count crashing well after a week and several blood test his count still hasn't picked up so chemo has been delayed even more.
It was decided that Ashley should be given a few doses of gcfs to try and give his count a boost.
Ashley had 1 dose today and his count will be rechecked in the morning if his neuts are 0.75 or above then chemo will start tommorow afternoon and continue for 7 days meaning they will finish on Christmas eve.
If his count is not up tommorow then 3 more doses of gcfs will be given and his blood checked again on monday to start that afternoon if up, but unfortunately this will mean a visit to hospital on Christmas day for chemo.
Further delays could also means delays in re staging and the operation.
I am very disappointed things have worked out like this as i had planned for a very special day at home with the family family alltogether., just one day without the though or worry of hospitals, doctors ,nurses , chemo etc just some good old family fun and games. Also i think father Christmas is bringing some very special presents too.
10th Dec
The morning after the trip a very tired and weary Ashley woke us up by saying he didn't feel to good, I checked Ashley's temp and it was 38.6 which wasn't good.
I phoned our local hospital and was asked to bring Ash in, we were there between 11am and 6pm in a mixed 6 bedded assessment unit Which i wasn't happy with as the risk of cross infection.
Ashley's bloods were checked and was he, but his bloods came back ok and he had no real signs of infection, chest x ray was clear he just had a just a high temp and was very tired. Ashley was started in IV antibiotics.
Ashley was meant to be kept in over night but there was no cubicle available so we took him home checked his temp regularly and gave him calpol.
The next day Ashley had another dose of antibiotics at hospital, then on Friday we went to Oxford to start the the next round of TVD chemo as it had already been delayed over a week.
Ashley bloods were checked as routine before chemo to find out his neuts had dropped from 2.6 on weds to 0.1 so we headed back home and chemo has been put back until his count recovers.
It is thought Ashley has a virual infection as this can cause the count to crash like this.
Ashley is ok in himself, the high temp has gone but he does have bit of a cough and cold still.
A quiet weekend at home putting up the Christmas decoration and wrapping presents.
Euro Disney - 13th Dec
We did eventually at the last minute and with alot of calling around and doctors sending faxes get insurance for Ashley and go to Euro Disney with the Thomas ball foundation who i cant thank enough.
Sat 7th we stayed at clic house in Oxford as the couch was leaving from JR and 6am in the morning and with an hour drive from home we thought it would be the best thing to do. Ashley as were all of us was very excited he didn't go to sleep until 11pm and we all went to bed at 9pm he had alot of questions lol.
Sun 7th Dec
Our day started by being woken up at 5am, We all wearingly got dressed and made our way over to the hospital we meet up with some of the other families going on the trip.
6.15 the coach arrived and we were off, we got the Euro star train from St. Pancras direct to Paris.
The children were all very excitted on the journey and the 4hours flew by, we arrived by 12.30pm.
The hotel was lovely just as i had expected it to be we stayed at the cheynee, the wild west hotel.
We dumped our bags and wrapped up warm as it was very very cold, we were about to go when Amber managed to lock herself in the toilet after 10 mins of panicking and trying to get her to turn the lock she did it.
We caught the hopper bus over to the park, it was amazing all done up for christmas with lights and decoration.
We went on several rides and saw a parade, stopped for dinner, went in the gift shops and watched the stitch live show which was very funny.
We all slept like a log that night.
Monday 8th
We walked over to the main part of the hotel for breakfast a buffet style help yourself, then headed back over to the park we spent most the day at Disney making good use of our cue jump pass, unfortuntly it got to cold for Ashley who ended up with 5 layers on and was still cold so we headed back to the hotel for dinner and to listen to some country music in the bar.
Monday 9th
Everyone on the trip meet up for a group photo with pluto.
We then had breakfast, went back to our room collected our luggage and left it at the safe store lugage place then spent another day at the park.
We went on another load of rides and saw the animagic show, when we came out of the show was snowing, which made the whole trip even more magical, although after a couple hours of snow the fascination had worn of and we were cold and wet. We had something warm to eat and spent the last of our money in the gift shops then headed back to the hotel to meet the others and head home.
All in all we had a great time despite the cold and snow and would like to thank Elaine and Trevor from the Thomas ball foundation for making it possible for us to go.
Stem cell hsrvest - 13th Dec
The stem cell harvest took place as planed over 2 days, Tuesday morning we were informed that Ashley would be first on the operating list to have the vas cath fitted to do the harvest.
The machine was in place as with the lovely blood nurse and doctors all waiting to proceed, but unfortunately Ashley got pushed back a place as there was a younger and more poorlyer child that needed to be seen to first. So whilst we all waited Ashley played happily in the playroom with Amber.
Around 11.30 Ashley went down by 12.30 he was still there and i was getting quiet concerned as we had been told it would only take 20 - 30 mins. Our nurse for the day Mathew called down, and Ashley was out of theatre and had been for a while but unfortunately it takes along time for Ashley to come round from anaesthetic.
The nurse in charge was not happy for Ashley to come back to the ward until he was fully conscious, luckily 10 mins later we had a phone call saying he was sitting up and asking for us.
30 mins later and after alot of checks Ashley was connected to the machine and the harvest started, it all look quiet complicated with blood going out and blood going in. After 4 long hours, The harvest was finished for day one.
Day 2 was pretty much the same the poor blood nurse had to sit and watch Ashley playing on the playsation for another 4 hours lol. Once the harvest was completed we were told we would have to wait an hour or so to get the results to see if they had collected enough cells, 5.6 were collected in total which was enough and enough if Ashley did relapse in the future.
It was decided Ashley needed a platelet transfusion before going home as they had halved due to the harvest, then Ashley was given chloride a mild anaesthetic to make him sleepy whist taking out the vas cath so Ashley would be still, unfortunately instead of it only lasting of a hour it lasted all night.
Ashley would not wake up, he was responsive to the pain tests and movement but other than that was out for the count, his bp and heart rate had dropped as well which was quiet worrying so it was decided he should stay in another night for observation.
At 6.30 am Ashley woke up with a big yarn and saying" oh were still here i thought we were going home".
29th November
The past few days have brought some unwanted news, first we found out Ashley was refused insurance for the Disney trip next weekend and are now waiting for a response from another company. Secondly that Ashley's blood levels have done unexpected things.
To do the stem cell harvest next week, Ashley blood levels need to be caught as they starting to rise so the cell are undeveloped. Ashley has gcfs after chemotherapy anyway to help boost his system, but should of had 5 days of double dose before the stem cell harvest so his levels are at a high, but just after 1 double dose they soared from 1.6 to 11.8 and we have now been told we may have missed the opportunity to do the harvest as his bloods have peaked earlier than the average and come Monday when they check for stem cells there is a chance the cells may have already matured and they wont be able to go ahead.
So i have been told to leave out 2 doses of gcfs and then give Sundays and Mondays as normal, and we will all be crossing our finger for a good result.
Amber , Ashley's little sister has been unwell for the past few days with a high temperature and a cold, Touch wood Ashley is still well and seems to have not developed anything.
Hopefully Monday will bring good news
25th November
Ashley had to have a platelet transfusion yesterday, unfortunately (to Ashley's great annyoance as he wanted to get home to watch Ben 10) even with iv piriton before hand Ashley had a reaction, he developed a itchy red rash and hives, after a few hours and another dose of piriton the rash began to settle and we were able to go home.
Today Ruth the nursery nurse is coming to play today, Ashley is looking forward to seeing her and playing games.
The passports have arrived and all is set for Disney paris, just need to get those blood levels up.
20th Nov
Ashley is having a good week just chilling at home.
He had a venflon ( like a canular) put in his leg on Tuesday so I am able to give him his daily injections of G-CSF this is a growth factor and will help boost Ashley's white blood cell count and neutrophils, this will help to boost his immunity and make it saver for him to go out in public without the risk of getting an infection.
Ruth the Nursery Nurse from the community complex care team came on weds to play with Ashley which he really enjoyed.
Ashley is very excited about being able to go to Disney and is making plans from what games we can play on the way there to what rides he is going to go on and the characters he wants to see.
17th November
At 6.10pm yesterday Ashley finished his 3rd round of TVD. Ashley is well and has had no real side effects from the chemo other than a drop in his blood count. (he had a blood transfusion on Saturday).
Ashley spent the weekend connected not his favourite thing, but he didn't let it stop him from playing Indiana Jones on the playstation, He even had the nurses playing with him.
Grandma and Grandpa came to visit on Sunday and brought Amber with them, I think Amber had worn them out. Ashley was very pleased to see them and Amber.
Over the weekend we had some good news Ashley’s gfr (kidney test) result revealed Ashley kidney function has gone back up within normal limits and the Stem cell harvest has been booked for the 1st,2nd and 3rd of December.
We also had some very exciting news, due to the stem cell harvest being done we have been able to delay Ashley next tvd chemo for a few days and are now able to go on the annual trip to Euro Disney with the Thomas ball foundation.
It has been a mad dash as the trip is on the 7th December, I will be sorting the passports tomorrow and Elaine from the Thomas Ball foundation has been so helpful as always.
11th Nov Day 2 TVD
On Monday Ashley started round 3 of TVD chemo, he is doing well no side effects as yet and he is in high spirits.
Ashley quiet likes going to Oxford at the moment as his friend who has Leukaemia is there at the moment having treatment. Its quiet amazing to watch them playing happily hooked up to their chemo's not a bit bothered by it, well other than it be a big give away when trying to play hide and seek.
Lets see what fun tomorrow holds.
Friday 7th Nov
We had a meeting with Dr Wheeler (Ashley's oncologist) yesterday, the news wasn't as good as we had hoped. On the up side the bone marrow sample were now coming back clear off Neuroblastoma cells and the scans revelled the primary tumour had shrunk even more, but unfortunately the mibg scans also showed faint shadow area at the hips,legs and arm so although they are fainter than the last scan in august which is great as this means there was a response to the TVD Chemo, but unfortunately not enough to move on to surgery.
(I would like to thank Dr wheeler for being so great she was very honest and straightforward with us and answered all our many , many questions, I truly think she has Ashley interests first and we really value her opinion).
So as from Monday Ashley will be back on Chemo, 5 short daily doses, then 1 long 48 hour dose.
We have a quiet day planned with lots of painting and colouring, Ashley also wants to start his Christmas list !
5th November
Yesterday Ashley went to visit his class at school it was the first time he had been to visit since July, he had a wonderful afternoon playing with his friends and was very sad to leave. Ashley cant wait to be able to go back to school he misses it so much.
Amber isn't to good today she has developed a croup kind of cough and was awake a lot of last night and is very clingy today. Ashley is watching his new Indiana Jones dvd trilogy's.
Feeling anxious about tommorow's test results, fingers crossed.
Welcome to Ashley’s diary - 3rd November
Ashley had a busy weekend on Friday he dressed up as four arms his favourite alien character from Ben 10 and went trickle treating with daddy and Amber who dressed up as a very cute bumble bee (a much appreciated costume that post pals sent her).
Ashley then had a sleep over at grandmas and grandpas that night.
On Saturday we had a quiet day with a trip to the garden centre and on Sunday we had a firework party with lots of bangs and sparkles in the sky, Ashley was very happy to see all the family grandma and grandpa, granddad Kevin and nanny Cheryl, Meghan, Ben and Mackenzie, nanny Angie and uncle Mitchell. We had a great night and lots of fun. Today the community nurse came to check Ashley’s blood levels and all is good HB is a little low but everything else is good neutrophills are above 1 which means Ashley ok to go out.
On the 27TH October Ashley had a double bone marrow aspiration and trephines, not his favourite procedure! . on the 28th and 29th Ashley had MIBG scans, we await these results on Thursday 6th November. The results of these tests will determine if Ashley will have surgery on 12th November to remove the tumour and then a stem cell harvest or if more TVD chemo is needed if the bone marrow is not clear.
