Dad told he has months left to live after stem cell transplant fails – Wales Online

When Phil Huntley started experiencing cold and flu-like symptoms just weeks after his wedding, he initially thought very little of it.

But after visiting his GP and seeing an out-of-hours doctor, his condition deteriorated to such an extent that he collapsed at home.

Tests in hospital confirmed that not only did the 38-year-old have pneumonia and sepsis, but also a rare form of leukaemia which has now spread to his skin and central nervous system.

He has now been told he may have just months left to live after a stem cell transplant failed.

The most recent news has devastated us, but we remain hopeful that against all odds all will be well, said his wife Sian Huntley, 50.

We are determined to live our best lives, make every day count and be grateful for everything.

We are doing our best to make sure the absolute fear that we feel doesn't take over, and instead we breathe and live each moment with joy and gratitude.

Phil, who married Sian in December 2018, said he started suffering with severe night sweats in January 2019 before he became increasingly unwell.

I was dosing myself up on flu relief and still going to work every day. I carried on like that for a few weeks, recalled Phil, a former employee with the National Trust.

Eventually I went to my GP as I knew something wasn't right, but they just said 'something was going around' at the moment and told me to come back in a few days for a blood test if things didn't improve.

After seeing an out-of-hours GP who gave him antibiotics for a suspected chest infection, his condition deteriorated further.

One day it took until 2pm to get out of bed. I managed to find the strength to have a shower. At one point I lost my footing, but moments later everything just went black.

I woke up in Sian's arms who was on the phone to the ambulance.

In A&E at Withybush Hospital in Haverfordwest, blood tests revealed that Phil had pneumonia and sepsis, a condition which causes the body's immune to go into overdrive and start attacking healthy tissue and organs.

It was also discovered that the Solva resident had leukaemia and would need to be transferred to the University Hospital of Wales (UHW) in Cardiff.

Leukaemia was the last thing that crossed my mind, said Phil.

I think the gravity of the whole situation only hit me towards the end of my ambulance ride between Withybush and UHW.

I just felt shock - and such disbelief that I could have laughed. Between myself and Sian we have four children and all I could do is think of them.

While Phil recovered quickly from sepsis, he would need many gruelling rounds of chemotherapy to treat the leukaemia.

I was in UHW for two months to begin with, a week of which was in intensive care, Phil added.

That's all pretty much a blur, and for the first month I didn't leave my bed.

In the second month I had to learn to walk again. When I managed to get myself to the toilet for the first time on my own it was a little personal victory.

Sian added that their four children Dylan, nine; Ben, 10; Katie, 14; and Amy, 16, have all been brilliant while Phil has been unwell.

She said: They all help in any way they can. We know they are struggling and worrying about things. The two older girls have taken on some additional responsibility such as looking after Ben.

But emotionally it has really taken its toll.

Phil, who was later also found to have aspergillosis, a condition which causes major breathing problems, ended up contracting sepsis four times in total following every round of chemotherapy.

Every time he had chemotherapy we were on red alert and would need to take him to hospital, said Sian.

But the staff at Withybush Hospital were amazing and acted straight away to prevent Phil from going into septic shock.

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In November 2019, nurses informed Phil that a positive stem cell match had been found for him, giving him hope that he may be cured.

It was a 27-year-old guy from somewhere in Wales and the match was 100%, he said.

But by this point I'd developed leukaemia of the skin, which is only found in around 2% of leukaemia patients. The Cardiff team hadn't really dealt with it previously.

I was in isolation for four to six weeks in UHW for chemotherapy, then I went to Velindre for radiotherapy on my skin, and then I went back to UHW for the transplant to be carried out which was done through an IV drip into my arm.

While Phil started to see signs of improvement early on after the transplant, by mid February 2020 the legions that had vanished from his skin began to reappear.

It's been horrendous, said Sian. At times none of this has seemed real.

His condition is so rare that there is currently no research or medical trials taking place.

A GoFundMe page was set up for the family by close friend Jacqueline Roberts so they can enjoy the time they have left together by going on regular trips around Wales and the UK.

To donate, go to https://www.gofundme.com/f/phil-the-super-hero

But sadly, due to the outbreak of coronavirus and Phil being classified as an extremely at risk patient, he is unable to leave his Pembrokeshire home for at least the next three months.

Sian admitted that she was terrified of picking up the virus and passing it onto her severely unwell husband.

Sian said: We wanted to make some memories as a family, but we are obviously very mindful of the current situation.

We wanted to go to Cornwall as a family but that's obviously not happening now. We are very fortunate to live in a very beautiful part of Wales anyway.

Phil, who is now having monthly injections to slow down the progress of the leukaemia, said he is looking forward to spending some time at home with his family.

I've been either in the hospital or stuck in the house for quite some time now. I just feel sorry for the children as they cannot go anywhere, he said.

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Dad told he has months left to live after stem cell transplant fails - Wales Online