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.