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
