Family hopes rare disorder cured by marrow transplant

Colin MacLean
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Immune deficiency forces toddler to live in ‘bubble’

Logan Hickey, 2, of O’Donnell’s, St. Mary’s Bay, is recovering from a bone marrow transplant he received last week. Logan has been in and out of hospital for the past year. — Submitted photo

Today is Logan Hickey’s second birthday.

He’s going to get a few presents, some balloons and he’ll spend the day with his family.

It’s going to be a happy day — despite everything that’s happened in the past year.

Logan is an unhealthy little boy.

His home for the past several months has been the SickKids Hospital and Ronald McDonald House in Toronto, Ont.

On Friday of last week Logan, who is from O’Donnell’s, St. Mary’s Bay, received a bone marrow transplant.

This was the only way doctors say his life could be saved.

“It’s been rough,” said Cindy Hickey, his mother.

The family discovered last year that Logan has a severe immune deficiency condition. He’s been in hospital ever since.

But things are finally looking up, said Hickey during an interview on Sunday.

“I never thought we’d get to this point. So it’s good. We’re here. It’s done. Now we just pray and hope that he pulls through it,” she said.

“Yes, I know there is going to be rough days to come ahead. But Logan is such a little trouper that together we’ll help him and hopefully there won’t be too long left in hospital now before he can come over (to Ronald McDonald House) with us.”

Doctors first noticed something was wrong with Logan shortly after his one-year immunizations. He broke out into rashes not long after.

The doctors at the Janeway Hospital in St. John’s thought Logan had chicken pox, and treated him as such. But the condition got worse.

Finally, after a biopsy, it was determined that he had an extremely rare skin condition. Local doctors had never seen anything like it, but they suspected there might be an underlying cause.

The family was medevaced to Toronto SickKids where, after a lot of tests and a month of waiting, doctors determined Logan had a severe immune deficiency.

 

His body’s natural defences were not doing their job, which meant normally harmless illness like the flu could be fatal.  

Even his mysterious skin condition had been caused by a normally harmless bacteria on all our skins.

“Our only option was a bone marrow transplant,” said Hickey.

“The decision was totally ours — we could refuse it — but they said they’ve never seen a (person with this condition) live past four years old. It’s possible that he could, but he would be in and out of the hospital his whole life, he’d basically be a bubble boy,” she said.

The Hickey’s made their choice.

Logan’s blood type is very common so they had no trouble finding a donor.

He went into isolation at the hospital four months ago. No one was allowed to go near him, except necessary doctors, nurses, his parents and one grandmother. Everyone had to wear masks, gowns, slippers and gloves.

 They couldn’t risk passing any germs on to him.

“He’s basically in a bubble here at the hospital,” said Hickey.

Logan started his chemotherapy earlier this month. It completely wiped out his body’s defence system to give the transplanted marrow the best chance adapt and replace it.

He’s monitored for signs of rejection. That is most likely to happen sometime in the first year after treatment.

He’s got to spend another four to six months in the hospital, at which point he might be able to go back to the Ronald McDonald house for the rest of the year.

That is if everything goes well.

If it goes very badly, Logan could die. But the more likely situation is they’ll have to try another marrow transplant.

But if things go well with this transplant, Logan could lead a normal life.

It’s been a hard year, said Hickey, but her boy is holding up relatively well.

“It hasn’t taken the good out of him yet. He’s doing really well,” she said.

Both Cindy, who is a an assistant manager at a retail store, and her husband Corey, a fisherman, will stay in Toronto for the next year so they can monitor Logan’s recovery. They also have their other son, Jayden, 4, with them.

“That’s the plan. But I guess we’re just going to have to wait and see. We really don’t know. I guess it would depend on how Logan is feeling. Maybe by the time he gets out of here and he’s down to one day a week clinic visits than maybe my husband go back home and go back to work. But we really don’t know,” she said.

They’ve gotten by on employment insurance, so it’s been tough. But their home communities have been tremendously supportive with financial and emotional support.

The most recent initiative is by Elaine Doody, a friend of the family.

Her husband had a bone marrow transplant 11 years ago. So she’s decided to have a walk-a-thon for the Hickeys. She’s asking anyone interested in sponsoring her to email her at elaine_doody@hotmail.com.

“I just wanted to pay it forward, because people were so good to me and my family when we went through the same thing 11 years ago,” she said.

“We would never have survived without support, emotionally and financially ... so one good turn deserves another,” she said.

The walk will take place on Sept. 7, 2012, in Admiral’s Beach.

Hickey also keeps her community updated via Facebook, she’s set up a group where people can leave messages of support. It can be found by searching Logan’s Journey on that website.

 

cmaclean@thetelegram.com

Twitter: @TelegramMacLean

Organizations: Ronald McDonald House, SickKids Hospital, Janeway Hospital

Geographic location: Toronto

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  • Leah
    August 27, 2012 - 07:46

    God is with Logan, his parents, and little Jayden, even though there is no understanding as why this precious little boy has to go through so much suffering. Let Him hold you and comfort you and get you through this long road ahead. Now that I know about Logan, he and his family will be in my thoughts and prayers.