Gary Stevens’ three-year-old son Jack is set for a major step in his recovery from a rare form of blood cancer when he is discharged from Perth Children’s Hospital on Monday.
Jack underwent a stem cell transplant on 9 September following his diagnosis with juvenile myelomonocytic leukaemia (JMML) in May.
Stevens learned on Monday this week that the stem cells Jack received from older brother Oliver had ‘engrafted’, meaning they have entered Jack’s bone marrow, enabling him to produce his own white blood cells.
The transplant procedure was brought forward after Jack responded to two rounds of preparatory chemotherapy, negating an original plan for five cycles of treatment.
Since his stem cell treatment Jack has been housed deep in isolation in hospital.
He will be discharged to a nearby apartment and during the week live with mum Louise. Stevens – a brilliant right-back in Howard Kendall's magical mid-1980s Everton team – and the couple’s other sons, Oliver and Josh, will join Jack and Louise at weekends.
“Five weeks down the line from his transplant, he has done really, really well,” Stevens told evertonfc.com.
“Every day at 5am he has a little bit of blood taken and the numbers come up.
“They check white blood cells (which provide the immune system’s frontline), neutrophils (a form of white blood cell and the body’s first line of defence against infection), haemoglobin (protein in red blood cells which transports oxygen to he body’s tissues and cells) and platelets (which help blood clot in response to a cut or wound).
“Initially, nothing changed, other than Jack losing his hair. I shaved mine so we could be 'twins'.
“But after a few weeks some numbers started to creep up.
"Oliver’s stem cells managed to make their way into Jack’s bone marrow, so he is now producing his own white blood cells and neutrophils.
“That has really kicked on in the past week-to-10 days – and we were told on Monday he can be officially termed engrafted.
“The plan is for Jack to be discharged this coming Monday.
“Two fantastic charities – Cancer Council Australia and the Leukaemia Foundation – have apartments in Perth for this situation.
“My wife and Jack will spend weekdays together – he will visit hospital on Mondays and Thursdays for check-ups – then we can join them and be a family for the weekend.
“This will probably last two months.
“Then every hour, day, week and month, he should get stronger and stronger and, hopefully, reach a point here he can be discharged home.
“It is all good news. It couldn’t have gone any better.”
Louise, an occupational therapist, successfully petitioned for Jack’s stem cell transplant to be moved to an earlier date following his positive reaction to two chemotherapy cycles.
Consultants conferred with experts in Germany – although, explains Stevens, there is no hard-and-fast best-practice treatment for JMML given the condition’s extreme rarity – before agreeing to speed-up the process.
Jack's treatment was altered in readiness for what would be a successful procedure.
Subsequently, says Stevens, it is imperative to treat Jack “like porcelain” as his body begins to revivify.
“He was originally set for five rounds of horrible chemotherapy,” says Stevens, named an Everton Giant by the Club last month and capped 46 times by England.
“But after the second cycle his numbers were looking good and pretty much where we wanted him.
“My wife has as a medical background and she fought to bring the transplant forward.
“Eight days before the transplant, his treatment was changed to eradicate his bone marrow and stem cells; almost creating a blank slate for what came next.
“Post-transplant, he was moved even deeper into isolation, into a little, high-pressure room, which is very sparse and barren.
“Everything that goes in there needs to be cleaned twice.
“There’s an anti-room where you wash everything and put on gowns on masks before entering his room.
"It is an amazing process.
“Every step of his treatment carries problems and a lot of deaths from leukaemia, particularly this form of the illness, are because the treatment is so brutal.
“But he didn’t suffer any significant problems post-chemotherapy.
“The process with leukaemia is one step at a time.
“But this is a massive step and we are excited and delighted to be told we can take it.
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EVERTON'S 1985 HEROES REUNITED AT ST GEORGE'S HALL
“It is a big platform for us.
“Without this, we couldn’t go on.”
Jack is “still very fragile, with a very low immune system”, says Stevens.
He has to wear shoes, even indoors, to guard against infection – although Louise is hoping to take Jack to a playground, during school hours, after he is discharged from hospital.
Stevens is understandably reluctant to look too far ahead.
But close to five months after Jack’s diagnosis he refuses to view the period from an entirely negative standpoint.
“My wife and I have both said, it has been a pleasure being in a room with him.
“Nobody will ever spend 24 hours a day with their child for a number of months.
“We have got very close to him and know him inside out.
“But that’s a double-edge sword, of course, we’d rather he had time away from us and more time with his brothers.
“The poor boy has spent close to 20-per-cent of his life in hospital.
“He is quite institutionalised and it will be a culture shock for him to step out of the room.
“He will probably be calling for the nurse for the next five or six months.
“He is having more moments when his little world collapses.
“I might make an error: I’ll talk to my wife about what the kids had for dinner or where we’ve been and Jack will ask if he can sleep at home.
“When we say no, he’ll collapse.
“He is in a beautiful hospital overlooking King’s Park.
“We saw a rainbow out of the window the other day and made a big thing about it being his rainbow.
“Five minutes later it disappeared and he was asking, ‘Where’s my rainbow?’
“We said, ‘It’s gone, darling’.
“His face collapsed and he went in on himself, crying and saying 'My rainbow'.
“So he’s having his moments, which you would expect.
“But he is feeling a lot better.”
A quirk of fate last week delivered Stevens back to the emergency department where he and Louise learned Jack’s diagnosis on 26 May.
He relates a story which sums up the frantic world into which the Stevens family was plunged this year.
Stevens was into his second hour on hold on a telephone call when his doorbell rang.
As he ushered in a member of his local church, who was delivering a food parcel, Stevens heard “a thud following by screaming”.
“Ollie had tripped over the door and broken his arm,” Stevens continues.
“It is all right, not a bad break. He is okay.
“We had four hours in the emergency department at the local hospital.
“I was sat there thinking, ‘That doctor over there is the one who told us Jack has leukaemia’.
“It was really weird.”
Stevens confirms he unequivocally would have accepted Jack’s position today when he first discovered his son’s condition.
“We don’t want to jump around too much,” says Stevens.
“In about 50 per-cent of cases, from Jack’s current position, the graft fails within a few months.
“The positive side is a second transplant often stabilises things.
“We are well over what we could consider the worst, all the nasty complications which come with chemotherapy and having a poor immune system.
“But we don’t want to consider ourselves out the woods yet.”
Or visit the Stevens family GoFundMe page here.