Who was Rhys? Part 2

I recently found a USB flash drive with some things that Rhys had produced while at school. There was something that he'd written in 2007 which is a good place to start the next bit of his story.

The Day I Surprised My Dad And Mum

Two years ago on my Mum’s birthday I surprised my mum and dad by having Leukaemia. I went into hospital on the Tuesday with mum and dad and we saw the doctor, she said you will have to go up to Bristol for medicine to make you better.

Then on the Wednesday we went up to Bristol in an ambulance. The ambulance went the wrong way but my dad kept to the path. when we got there I went up to ward 34 and they put me on a bed.

What was a bigger surprise was they kept me in for 6 months. 

In 2003 Rhys finished treatment for his Acute Lymphoblastic Leukaemia. Life could get back to the sort of normality that lots of other families enjoy.

Rhys was enjoying primary school and we were enjoying a life that didn't revolve around hospitals. 

We had 18 months of that before Rhys started complaining that his arm hurt. We weren't overly concerned at the time but asked the medical team at the hospital that had looked after him if it was possible to get him checked over. Tests were performed and before we knew it we were being told that he had relapsed and the A.L.L was back.    

                                       

As Rhys described we found ourselves heading to Bristol once more. This time our stay was a lot longer because the doctors decided that they wanted to give him a more aggressive treatment, and the best way to do that was for him to spend the time in Bristol because he would be having cranial radiotherapy in addition to chemotherapy.

We were lucky because we were able to get a room at CLIC House, which is about 15 to 20 minutes walk from the Children's Hospital. At one point we found ourselves using the flat attached to the house. It was during that time Rhys first raised the possibility of dying.

No parent wants to think that their child is going to die before them, no parent ever should have to have those thoughts. Neither should a parent have to have a conversation with their child about why they think they might die. I found myself having that conversation with Rhys one weekend when I was staying with him.

It was a short conversation because Rhys' response to my asking him why he thought he might die, had someone said something to him for instance,  was "I don't know, it just popped in to my head".

Not wanting him to fixate on the idea we quietly left the subject drop and it was never raised again, at least not for another 12 years.

The 6 month stay finally ended in December 2005, allowing us enough time to pack everything up in Bristol and head home for Christmas.

The treatment protocol at the time for boys that had relapsed was two years of treatment so we once again found ourselves in the routine of daily medication regular blood tests, and those all important visits to the hospital, whether for check-ups, lumber punctures or short stays while the doctors pumped Rhys full of anti-biotics and other drugs to combat whatever infection or illness he'd picked up.

In 2007 we reached the two year milestone and treatment once again ended, but life wasn't to return to normal.

Within months of having completed treatment Rhys was having excruciating headaches. He would sometimes go to bed at night with  headache and wake up the following morning with the same one or another one. Some mornings they were so bad he couldn't get out of bed and we just had to leave him go back to sleep, ringing the school to inform them that he wouldn't be in.

Over the following months we explored every route to try and figure out what was causing the headaches. We went to the optician to have his eyes tested. We had appointments at the hospital ophthalmology department but this didn't show anything. Eventually his consultant in Bristol suggested a lumbar puncture for completeness, because the chances of it being the Leukaemia were incredibly slim due to the length of time since he'd finished treatment.

A trip to Bristol followed and Rhys underwent yet another lumbar puncture.

It wasn't long before we were back in Bristol to hear the results and they weren't what we wanted to hear. Rhys had relapsed once again.

His consultant explained to us that there were only two options, either he underwent a bone marrow transplant or we went home and it would just be a matter of time before the cancer claimed him. We did what any parent would do and choose the option that gave him a fighting chance, not a huge one. As we were told at the time, Rhys was unique. He had Neurofibromatosis. He had A.L.L, and was about to embark on his third batch of treatment. The hospital had not dealt with another child with that same history.  Rhys' chances of survival were around 20%.

From May until September of 2008 Rhys and us found ourselves in Bristol on the Bone Marrow Unit while his body was battered with radiotherapy and chemotherapy to destroy his bone marrow before it was allowed to rebuild itself thanks to bone marrow from a anonymous woman donor from the USA.

I won't describe that time in detail here because I wrote about it extensively at the time on a blog we set up for that specific purpose. That blog can be found here.

Who was Rhys?

With a blog called Surviving Rhys I should explain who he was.

Ieuan Rhys Powell, to give him his full name but everyone called him by his middle name because it was easier to say, was born on the 7th January 1998 at 12:16pm in Yeovil Maternity Hospital.

He weighed 7lb 14oz on arrival and was a decent 55cm in length, with a head circumference of 33.3cm. I still have all these little details written down.

Rhys was about a month premature because his Mum (see footnote below) had been suffering from pre-eclampsyia, which had meant a number of stays in hospital during the previous weeks. Fortunately we weren't in hospital on Christmas Day, but Boxing Day ended up being another matter, as did New Year's Eve.

After he was born, Rhys spent the first days of his life in the baby Intensive Care Unit before spending a few weeks in the flat on the maternity ward. A time that still brings back memories of nurses knocking on the door and asking what was cooking because it smelled delicious, it was a casserole, and, on another occasion, trying to walk the length of the ward while hiding wet jeans due to a nappy failure while he was sitting on my lap.

With that start in life it was no surprise that he was going to make our lives interesting.

Between his first Christmas and New Year, he developed a case of bronchitis, which resulted in us making a visit to the hospital in Cheltenham to get him checked over. We'd been staying with my in-laws in the Cotswolds at the time and were heading to Wales to stay with my parents over New Year.

In the summer of 2000, Rhys was diagnosed with Acute Lymphoblastic Leukaemia (ALL).

A few months before he was diagnosed we had gone away for the weekend to a wedding, leaving Rhys with my parents. The week after I was away on a training course and received a phone call from his Mum to say that he'd been limping and didn't want to walk, just wanted to be carried. They were taking him to the doctors.

The doctor suggested that he might have pulled a muscle or something similar and it wasn't unusual, if it didn't improve in a few days then they should take him back so they could take another look at him.Within a couple of days he was OK again.

In July, his legs hurt and we took him to the doctors who suggested that we monitor him and if it got worse take him to the hospital. That same evening we were in A&E waiting to see a paediatrician.

When she eventually arrvied we talked and she told us that she didn't like the colour on him, he was far too pale compared to his Mum and I, and she wanted to do some blood tests. We could either go home and come back in the following day, or she could admit him and they could do the blood tests on the children's ward that evening. We opted for the latter.

Once was safely on the ward in bed, and bloods had been taken, I left him and his Mum and went home.

Back then we had dial up Internet at home, which meant that when you were using it people couldn't phone you. At around midnight, the front door burst open and Rhys' Mum came in. I was needed back at the hospital because the blood results had come back and the paediatric consultant on duty wanted to talk to us about them.

Throwing on some clothes, we headed back to the hospital and shortly were sat in a room with the consultant who told us that Rhys had ALL. The shock was so much that it was all I could do to stop myself from laughing.

The doctor explained about the disease and what the immediate plan of action was. Rhys would be tranferred by ambulance to cancer ward at Bristol Children's Hospital.

Waiting until Rhys was being taken to the ambulance, I headed home and packed some bags for a few days, then drove up to Bristol and the hospital; arrving just as the ambulance crew were leaving.

The next couple of weeks were a whirlwind as Rhys began treatment and we tried to arrange for him to be transferred back to Yeovil where his treatment could be continued by the doctors and nurses there, under the supervision of the team at Bristol.

There were memorable times for him while staying in Bristol during those early days.

We saw the hot air balloons flying passed early morning when they took off from the balloon fiesta.

Rhys was allowed out of hospital and went to the zoo.

Months of intensive treatment followed before Rhys was deemed to be in remission and was switched to the maintenance treatment that would last for the next three years.

In 2003, Rhys finally came off treatment and our family life could get back to something that resembled other people's.

But the story doesn't end there and I'll continue with what happened next in another post.


Footnote:
I've mentioned Rhys' Mum in the post, by that I mean his biological mum, the person that gave birth to him and spent the majority of the time at hospital with him. Throughout his life I was the main bread winner and so had to go to work. Even so, when he was in hospital in Yeovil I spent as much time as I could, when not working, at the hospital with him.

When he was having treatment in Bristol  for extended periods and I couldn't be there with him because I had to work I would drive him and his Mum to Bristol, drive up and back during the week to visit overnight, and then go back up to pick them up at the end of the week, either to stay the weekend or to bring them home for the weekend.