Ashley was a typical happy, outgoing 5 year old boy who loved trains and Ben 10.
In April 08 Ashley had been unwell for several weeks with stomach pains and vomiting and we had taken him to see the GP several times. Each time we were told it was something different; a viral infection, something he had eaten, abdominal migraines, he was making it up to get out of school etc and we were told that it would pass, which it did.
All was well for a couple of weeks, although Ashley’s appetite had reduced and he had noticeably lost weight, so much so that parents at school even commented. Then one day in May, Ashley came home from school saying that his legs hurt, we jollied him on thinking it was just muscle strain from P.E. that day, but he woke a few times that night in pain and the next day Ashley could not walk.
We took him back to the GP who referred us to the outpatients’ clinic at our local hospital, where we were informed it was Transient Synovitis of the hip and was likely to solve itself within 10-14 days and to treat the pain with paracetamol. By day 7 Ashley was getting worse not better; he had developed a high temperature, was waking up in the night with sweats, he was fatigued during the day and the pain in his legs was worse not better. I called the outpatients’ clinic to say he was still very ill and we took him in to the hospital. That’s when it was decided Ashley should be admitted for further investigation.
Ashley was admitted and seen by the orthopaedic team who repeatedly looked at his legs, hips and spine – checking for resistance in movement, and Ashley’s own expression as they did this. Following this, he had an ultra sound and X-ray done of his hips and legs, but they could see nothing wrong in those areas. So, a few more days past and Ashley condition worsened he had started vomiting again, the pain was still being treated with paracetamol and Ibuprofen. Another doctor at the hospital then suggested doing a scan on the abdomen as sometimes an obstruction could cause pains in the hips and legs although it was “unlikely”.
Ashley was a typical happy, outgoing 5 year old boy who loved trains and Ben 10.
Nobody was expecting anything to come of the ultrasound, we were simply thinking of it as precautionary, to rule that area out as the issue in their investigation. We couldn’t believe how wrong we were, and the look on the Radiologists face said it all.
To our absolute horror and disbelief, it was confirmed that Ashley had a 12x10x8cm lump above his left kidney. I remember telling Jamie that I had seen the “I’m sorry to tell you” look on the doctors’ faces before, through working in a hospital. I told Jamie I didn’t think it was good and that it could be cancer
We were taken into a small room with 3 doctors and 2 nurses and I remember feeling worried and anxious but most of all numb. In the back of my head I was saying “it’s cancer; no it can’t be, not my baby he just has some pains in his legs”!!
At that moment, it hit me like a fast moving train crashing in to a wall, we had been told it was very likely Ashley had a rare cancer called Neuroblastoma and most likely stage 4 ( being of the poorest curability level ) as the pains in his legs was likely due to the bone marrow being infected. We were then told this was NOT good and the cure rate was less favourable than other childhood cancers.
Although in terrible pain, Ashley was happy to spend that night at home, and the next day we had been referred to Oxford Children’s Hospital to their specialist oncology ward. We were in a daze not knowing what was happening and in total disbelief. How could our boy have cancer, it couldn’t be, it must be a mistake and it definitely can’t be stage 4!
Bed bound, and in a lot of pain Ashley had been put on morphine to control it, and it was at this point I didn’t think he was going to get better.
He had lots of different tests, scans and a Hickman line fitted and the results soon came back confirming the worst; not only did Ashley have the lump in his stomach but the cancer had also spread to the bone marrow in both hips, legs and 1 arm. Ashley was immediately started on a course of “Rapid COJEC” chemotherapy straight away.
The days went by very quickly blurring into one another, but by the second round of chemo the pains in Ashley’s legs were easing and the “old” Ashley was starting to return (lively and active), by the 4th dose Ashley was up and about and there was really no stopping him! He had seven rounds of this Rapid COJEC chemo, which in Ashley’s case comprised of the drugs: Vincristine, Carboplatin, Etoposide, Cisplatin and Cyclophosphamide and were given only 10 days apart.
As a side effect of the chemo Ashley did vomit a lot and would go days with eating minimal amounts of food, he gradually lost all of his hair but being the wonderful little boy that he is, he carried on smiling, being happy, loving and a cheeky little boy who loved trains and computer games
September 2008 – December 09
After the seven rounds of chemo it was hoped that the bone marrow would be free of Neuroblastoma cells and he could move on to the next course of treatment, however there was still a minimal amount of the disease detectable (5% effected cells within the sample taken) so this meant we were not able to press on and Ashley would have to have 2 more rounds of a different chemo called TVD (Topotecane, Vincristine and Doxorubicin).
Ashley had the 2 round of TVD but still it wasn’t enough the faint areas on the MIBG were less but still present, so another 2 rounds were given. This took us right up to Christmas eve 08 as each round took about a month.
In January, after another restaging the results finally showed all wide spread areas were clear and Ashley was in secondary remission. He then went on to have a complex operation to remove the main mass from his stomach, thankfully they managed to save is left kidney, but removed the adrenal gland. Shortly after that he had a stem cell harvest of his own cells. He had a VAS catheter put in his leg, and then this was attached to a huge machine that over 2 days sucked stem cells out to be frozen then put back in after high dose chemo.
On Feb 17th 2009 Ashley started high dose chemotherapy, Busulfan and melphalan at dangerously high levels 17 dose of chemotherapy over 4 days. He became very ill through this, developing server mucusitis of the throat and digestive tract. He was put on morphine for the pain and lots of antibiotics, antiviral drugs, plus many others to try and help prevent other complications, such as, VOD, a liver condition that can be caused by the chemo.
Unable to eat, he was given IV nutrition (TPN), then after the chemo was given on day 7, Ashley then had his stem cells put back in over 3 days.
At this point Ashley’s blood levels dangerously low and he had to have lots of platelets and a couple of blood transfusions. He also had to stay in complete isolation until his levels came back up.
In true Ashley style he bounced back just like that over night. Within a couple days of the GCFS starting Ashley had neutrophils again and his other bloods started to pick up.
We went home on the 17th march, and he was seen twice weekly in day clinic for platelets and checkups until he was 100 day post transplant; during this time Ashley had 14 days of radiotherapy to the abdomen.
Ashley was declared in full remission in May 09, he then started a 6 month course of cis-retinoic acid, this is meant to kill micro cell and add in preventing a relapse.
December 2009 -
Ashley completed his last round of cis-retinoic acid while we were on holiday in America for Ashley’s “make a wish”. It was the most amazing holiday, but sadly we were back to reality the week after Ashley had his 6 month testing, bone marrow, ultra sound, VMA urine, MIBG , all Ashley results came back clear other than his MIBG scan.
WHAM there is was again that runaway train that hit me in June 2008, the MIBG scan showed a faint hot spot to Ashley’s skull and neck. It was hoped the scan was a false positive and was just a bad scan, it does happen. Ashley had a ct scan to his head the following week and bone marrow test repeated.
On 22nd December we were told Ashley has relapsed. He had a 12mm mass to his brain and bone marrow disease once again. We were absolutely devastated. Our brave boy had gone through so much and after such a short time the monster had come back for another go.
Sadly there is NO protocol in the UK for relapsed Neuroblastoma ,and reaching remission again is very unlikely.
Ashley was completely well in himself, and the one and only sign there was that he had relapsed, was a sudden drop in his platelet count.
On 26th December Ashley started chemotherapy in the form of temadazomide and irritican, he had 2 rounds of this, and it was hoped that because the relapse was caught early by a routine scan that the chemo would have held the bone marrow disease. Sadly however, scans in late January showed the bone marrow disease had spread to shoulders, hips and leg. The lesion in his brain remained similar in size.
We were gutted, we had hoped so much that Ashley would have had a good response to the chemo and could have gone on to MIBG therapy at a later date.
We were faced with some very difficult decisions. 1 to give no more treatment and let Ashley enjoy life for as long as he can or 2 try a new trial drug.
We opted for the trial drug so we went to meet the team at the Great Marsden to find out about a new trial called the aurora kinease. This is a new form of treatment for cancer as it works like chemotherapy in killing cells, but it also is very good for Neuroblastoma in particular, as it attacks the MYCN (aggressive gene) that Ashley has.
We had yet another blow, as this great and promising drug was a phase 1 trial and had very strict entry requirements, and sadly Ashley’s platelet count never came back up so he could not be entered for the trial.
The day after we were told this, Ashley developed an infection and after a few days at our local hospital he was transferred to Oxford, the antibiotics worked and the infection cleared.
The night before we were due to come home Ashley developed pain in his right arm the it went numb, he was started on the steroid dexamethazone straight away because it was thought that the mass in his brain was causing his brain to swell.
On 19th February, Ashley had radiotherapy to the whole head, and then again the following Friday. He regained full use of his arm and the lesion seems to be stable again.
We were back again to the option of stopping treatment or trying something different, and again it wasn’t even questioned. Other than on and off pain, Ashley is still well, up and running about, so we continue on with this fight, and live in hope.
March 2010, Ashley had a 72 hour continous infusion of cisplatin and eptopiside, this will be repeated on the 22 March and it really is Ashley’s last hope of clearing any disease. The trial and MIBG therapy are still an option but only if he has a stable blood count, being unsupported.
We take each day at a time some days are good, and some are bad, but we are enjoying every moment we can as a family and live in HOPE.
xxx
