‘I TRY TO STAY ALIVE & HOPE FOR A CURE’

The dot­ing dad who knows he may die be­fore he sees his baby son grow up:

Wales On Sunday - - FRONT PAGE - ROBERT DALLING news­desk@waleson­line.co.uk

FOR most new par­ents, ev­ery mo­ment they spend with their new­born is pre­cious. But that is es­pe­cially so for one Cardiff dad.

Jack Dono­van and his wife Amy Prothero wel­comed their first child, Jaxon, into the world on Novem­ber 8 last year, weigh­ing in at 8lb 13oz.

Whereas most par­ents would now be look­ing ahead to a long and happy life watch­ing their child grow up and hit­ting mile­stones, the story is trag­i­cally dif­fer­ent for Jack.

The 29-year-old has a brain tu­mour and, be­cause he does not have a chro­mo­some called 1P19Q, his can­cer treat­ment is not as ef­fec­tive – mean­ing his re­main­ing life ex­pectancy has halved from about 15 years to seven.

It means he is mak­ing the most of ev­ery day he gets to spend with his son, who turned 10 months old yesterday.

“Be­ing a dad is re­ally, re­ally fun,” he said.

“I’m re­ally look­ing forward to watch­ing him grow up as long as I can. I’m look­ing to take ev­ery­thing day by day and en­joy my time with him.

“At first I pushed it to the back of my mind and tried not to think about it. It is re­ally hard know­ing you might not get to see him grow up. It’s pretty sad.

“I try not to think about it but some­times some peo­ple ask and when you sit on your own it is pretty sad.

“I’m not able to work at the mo­ment and my duty is to try and stay alive and hope for a cure.”

Amy, 26, de­scribed their lives to­gether as “bit­ter­sweet”.

She said: “You want that ex­tra part of Jack but know­ing Jaxon can’t have Jack for as long as you want is tough.

“Any­one can die to­mor­row but when you know it’s a lot harder liv­ing that way.

“You ask your­self ‘Will he see him do­ing this?’ or ‘Will he see him do­ing that?’ – es­pe­cially now with par­ents putting stuff on Face­book about their kids go­ing to high school, you do think, ‘Will he be around for that mo­ment?’

“It’s some­thing you can’t switch off.

“It’s some­thing I don’t get used to but we’ve got to deal with it.

“When I first found out I was preg­nant you ask if it’s fool­ish bring­ing a child through an up­bring­ing when all this is hap­pen­ing. But the answer is ‘not at all’ – we’re lucky to have him and to share our mem­o­ries to­gether.”

Doc­tors are not go­ing to carry out surgery, as Jack’s tu­mour is too close to his main blood ves­sel.

He is in­stead re­ceiv­ing chemo­ther­apy and ra­di­a­tion treat­ment.

He vis­its the doc­tors ev­ery week or two, suf­fer­ing headaches, dizzi­ness and sickness.

He has also ex­pe­ri­enced the side ef­fects of tablets and has changed them four times. Jack has to un­dergo an MRI scan ev­ery six months, as well as neu­rol­ogy ap­point­ments ev­ery three months, while he also ex­pe­ri­ences neu­ro­log­i­cal pain from his epilepsy.

His con­di­tion means get­ting up early in the morn­ing is a “no-go” for him, which he finds frus­trat­ing as it means he can spend less pre­cious time with Jaxon.

“The pres­sure on the tu­mour means I get re­ally bad headaches, dizzi­ness and sickness, along with blurred vi­sion – it ba­si­cally means I can’t do any­thing un­til about noon to 1pm,” he said.

“The headaches slow me down for most of the morn­ing and my think­ing process takes me a lot longer, which is frus­trat­ing.

“It’s frus­trat­ing as it means I can’t spend as much time with Jaxon as I’m re­ally bad. I’d like to go out to the park and do some­thing with him ev­ery day.”

Amy has a busy life look­ing af­ter Jack’s needs as well as those of her son.

She said: “It’s hard work when Jack is try­ing to be nor­mal – he tries to do too much and you can see his eyes get­ting blood­shot and drained.

“It’s harder when he is try­ing to be an easy pa­tient – it is much eas­ier when he lets me do things for him.

“Jack was do­ing ware­house work at Christ­mas time at Bob Martin and h i s health went dras­ti­cally down­hill. H e w a s pushi n g him­self t o o much. He was work­ing two or three days, then when I would pick him up he would be fall­ing asleep in the car. He was run­ning him­self into the ground and had to lis­ten to his body and stop.

“Jack’s big­gest thing is ad­mit­ting he can’t be Jack. That’s the hard­est bit.

“He was such a busy, out­go­ing, hard-work­ing guy, but now he has to be chilled and re­laxed and wants to keep go­ing when he can’t.”

The cou­ple, who live in Pen­twyn, are doc­u­ment­ing life as much as they can through a Face­book page and a YouTube chan­nel called Jack Dono­van – Life Is One Big and Beau­ti­ful Strug­gle, in or­der to give fel­low pa­tients some­thing to re­late to and cap­ture im­por­tant mem­o­ries for Jaxon and the fam­ily to look at in the fu­ture.

“We did it so if some­thing hap­pens to me Jaxon gets to look back and know who his dad was,” he said.

Amy added: “It’s some­thing we can all look back on – my­self, Jaxon, his fam­ily, my fam­ily – and it can raise aware­ness and un­der­stand­ing of what Jack has. A lot of peo­ple don’t have a full un­der­stand­ing of the im­pact of a brain tu­mour.

“A lot of the time he looks OK but we call it the blind dis­ease, as you can’t see it – you can only hear it when he is strug­gling to speak prop­erly.

“He ini­tially started a blog on Face­book but to­wards the end he was find­ing it quite hard to write them. My sis­ter’s part­ner then came up with the idea to start a YouTube chan­nel, which has been re­ally good and Jack has re­ally taken to it.

“It’s dif­fi­cult be­cause when he is feel­ing ill the last thing you want to do is put a cam­era in his face but that’s what peo­ple need to see. You have to show the real side of his con­di­tion the best way you can.

“It’s all about pre­serv­ing the mem­ory of him and also rais­ing aware­ness. We’ve had other peo­ple get in touch who have the same thing and it’s nice for Jack and for oth­ers to know they are not alone.”

RICHARD SWINGLER

Jack Dono­van, who has a brain tu­mour, with his baby boy Jaxon

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