Getting Started

During 2008 Rhys underwent a bone marrow transplant at Bristol Children's Hospital in order to finally deal with the Acute Lymphoblastic Leukaemia that has plagued him since 2000. To allow family and friends to follow what was happening and to keep in touch with him we started the original Rhys' Treatment Blog (go here to get started with it).

Over the years since there have been a few blips but nothing serious.

Rhys has gone through secondary school and in May his GCSEs are due to start. In September he hopes to go on to college and study childcare, he's a natural with children and they seem to like him.

Several months ago Rhys pointed out to us that one of his feet seemed to be colder than the other. We checked and this was indeed the case. After checking with the doctors various scans and tests were performed which led to us discovering that there was a problem with the blood flow to his leg, it was a bit slower than would normally be expected.

Several weeks ago Rhys complained that his back was hurting. We took him to the doctors and a pulled muscle was thought to be the problem. Rest and then a staggered return to all the activities he was doing (bacon sarnie eating (oops I mean ten pin bowling), life saving, badminton and going to the gym) was suggested. After a few weeks of rest Rhys' back was better and he returned to bowling. By this time, however, the hospital had organised a MRI scan of his back to make sure that there weren't any other problems causing the pain. It was during this scan that a shadow was observed in the abdomen area was spotted. Further scans were requested by hospital.

The first of these was an ultrasound. When he's had ultrasounds in the past its normally been done by a radiographer. On this case it was a doctor that performed the scan. By the end of the appointment Rhys' abdomen had been thoroughly checked and we were informed that the shadow was a solid mass of some sort, not fluid filled but with a blood flow through it. Fortunately it didn't seem to be attached to any organs. Especially the kidney it was near. It wasn't possible to tell what type of mass it was so we had to wait for a MRI scan which would tell us more.

The MRI followed a few days later. After the scan had been completed we went to see the consultant that looks after Rhys at our local hospital. He checked the results of the scan and told us that it was some form of tumour but a biopsy would be needed to identify what it was.

The plan was for him to go to the Bristol Children's Hospital and have the biopsy. We'd be told when but there wasn't any problems with him going away to his Aunt's as planned.

Rhys headed off to the Cotswolds on the Sunday after the MRI, on the Monday we had a phone call informing us that he had to go into hospital the following day for a few more tests and then to have the biopsy on the Wednesday.

For most people this wouldn't be a problem but in this case the trip to Bristol would mean driving on the M4 and M32 motorways, something that Tracey hadn't done a lot of. Although a nerve-wracking experience she did brilliantly and they managed to get to the hospital, via his Great Aunt and Uncle's home.

Wednesday saw the biopsy and it was hoped that Rhys would be able to go home the same day if he was feeling up to it.

The procedure went without any problems but as whatever painkillers he had been given, while under the general anesthetic, began to wear off he was in a lot of pain, far more than he should have been.

More painkillers were administered and it was agreed that Rhys should stay in overnight while the doctors got the pain under control.

During the evening Rhys got worse and so it turned out to be a good idea that he had stayed in.

Thursday dawned and the efforts to get the pain under control and to get Rhys eating and moving about continued. It was slow progress.

Late Thursday afternoon, early evening one of the consultants wanted to have a word with us because some of the results had come back and they wanted to look at further tests. Both Tracey and I were told separately, Tracey because she was in Bristol with him and me because I was at home and wanted to know before she was told in case it was really bad news. Unfortunately that didn't happen and she found out before me.

We'd planned to tell Rhys the following morning when I went up to collect them but while Tracey and I were talking on the phone about it Rhys sent me a text to ask if I'd spoken with the consultant. So Tracey and the consultant explained what the test results had shown and what the plan was for the future.

Now you're going to what the result of the biopsy was.

Rhys' tumour was cancerous, something we'd hoped it wouldn't be but had feared it would. Fortunately it wasn't anything to do with his Leukaemia. In fact it has to do with another condition that he has, Neurofibromatosis. Rhys has been diagnosed with something called a malignant peripheral nerve sheath tumour (also Malignant Schwannoma, Neurofibrosarcoma or Neurosarcoma) Cancer Research UK have a page with information about it here. This is a type of cancer has links to Neurofibromatosis and so was always something that there was a risk he could suffer from during his lifetime, especially given his passed history.

The plan of action for the coming weeks is to return to Bristol for further tests including scans, testing of his bone marrow and blood. All of these are designed to confirm that there are no other tumours that have been missed.

One the tests have been completed and its been confirmed that this is the only tumour then Rhys will undergo surgery with the intention of removing the whole tumour from his abdomen. The surgeon performing the operation does this type of procedure on a moderately regular basis so Rhys is in safe hands.

Assuming that all of the tumour can be removed then Rhys shouldn't have to have any further treatment and this will be a rather short blog, something that we all hope is the case.

If the surgery does not result in all of the tumour being removed its not the end of the world as Rhys can undergo radiotherapy to kill off anything that remains.

So as much as this wasn't news we ever wanted to hear its not uncharted territory and we have a clear path ahead of us.

And finally, one thing for Rhys when he reads this.

Two treatment blogs is quite enough thank you. As much as I enjoy blogging about your little escapades can we make it something exciting but less stressful for everyone next time, maybe deep sea shark wrestling or something.