Story

April 2008 to September 2008

Ashley had been unwell for several weeks with stomach pains and vomiting we had taken him to see the doctor several times and each time we were told it was something different, a viral infection, something he had eaten, abdominal migraines etc and 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. Then one day about 2 weeks later 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. Ashley woke a few times that night, in pain and the next day Ashley could not walk.

We took him to the doctors who referred us to the outpatients clinic at our local hospital we were informed it was Transient Synovitis of the Hip and was likely to solve itself within 10-14 days and treat the pain with paracetamol. But by day 7 Ashley was getting worse not better he had developed a temperature, was waking in the night in sweats and had become fatigue during the day also the pain was worse not better. We were then referred back to the outpatients clinic where it was decided Ashley would be admitted for further investigation.

Whilst Ashley was admitted, he was then seen by the orthopaedic team who saw him several times and looked at his legs, his hips and spine – checking for resistance in movement, and Ashley’s own expression has they did this. Following this, Ashley 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 the doctors 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”.

Neither myself , Jamie or any of the doctors to be honest were expecting anything to come of the ultrasound, we were simply thinking of it as to rule that area out as the issue in their investigation and we couldn’t believe how wrong we were the look on the Radiologists face said it all. And later to be confirmed, and with us in complete shock and horror to be told there was a 12 by 10 by 8cm lump above Ashley’s left kidney. At that moment I said to Jamie it’s not good I think it’s could be cancer, iv seen that look so many time (I worked at the hospital as a health care assistant and had seen the “I’m so sorry to tell you” face so many times before.)

Back on the ward we were taken into a small room with 3 doctors and 2 nurses. I remember feeling worried and anxious and most of all numb, in the back of my head I was saying its cancer no it can’t be..! Not my baby he just has some pains in his legs!! At that moment, it hit my 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 then cure rate was less favourable than other childhood cancers. That night we took Ashley home although in a lot of pain he was happy to be home, 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 or being able to believe what we had been told, cancer it cant be it must be a mistake and it defiantly cant be stage 4!.

Ashley was bed bound and very unwell he was in a lot of pain and had been put on morphine to control it. at this point I didn’t think he was going to get better. Ashley had further test’s over that week a VMA urine test, MIBG scan, CT scan , Bone Marrow samples and an open biopsy (at this point they also put in a Hickman line for treatment (this is also known as a Central Line).

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 legs and 1 arm. Ashley was immediately started on a course of “Rapid COJEC” chemotherapy straight away.

The days went by very quickly bluring into one and other 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! Ashley has had seven rounds of this Rapid COJEC chemo (which in Ashley’s case comprised of the drugs: Vincristine, Carboplatin, Etoposide, Cisplatin and Cyclophosphamide) and are 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 carries on smiling, being happy, loving and a cheeky little boy who loves trains and computer games and his little sitser.

September 2008 – Present Day as of writting ( November 2008)

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).This brings us to the present Ashley has had the 2 round of TVD and Has under gone a week long of tests again to see if the bone marrow is now clear to move on.

Please read diary to follow ashleys battle ....

We decided to do this, simply as a means to communicate to friends and family what has happened and what is going on. But further to this we hope this site will develop in to a means for other families who have been similarly affected as a result of this disease and perhaps in time act as a reference point for those. We hope in the future, once we are ready, to open a forum in which people can communicate, and share information more easily between one another.

During our time online looking at other sites, we found that many children who have or are suffering from this disease have relapsed or are relapsing (Bear in mind at first diagnosis the curability rate is 20%, and if they go in to a relapse of the disease post-treatment, the curability rate becomes alot less likely as this Cancer can come back with a vengeance.). With this in mind, and the common out come seen across the board is that in concern with treatments aside of what the children have had, there is nothing usually more that the UK Hospitals can do.

New treatments such as GD2 Antibody therapy (use in tirals in the USA) are and as of writing "unlikely" to be taken up in the UK/European trials any time soon. This then leaves much of the families to consider obtaining treatment in the USA as a last hope to perhaps turning the tide/buying some time, or hopefully "curing" it altogether. This is where most are raising funds through activities or via their websites (hence why we have a Donate Pay Pal button on this site as well to facilitate this in Ashleys case - as a "Plan B" (back up).

With the current UK treatment for this form of cancer being predominantly as a Clinical Trial , and you may well be asked if you would have your child entered in to it, and if you would allow the data from your child's scans, samples, and other tests to be shared within this trial. It's sort of comforting to know that the likes of UK and Europe are running the same trial.