RMH

Cindy recounts the journey that brought her family to Toronto for the first time so that their baby son Logan could receive life-saving treatment for a rare medical condition.

When did Logan get sick?
Logan started to get sick after his 12-month needle. He got a really rare skin infection from his vaccination so we were admitted to a hospital back home and he was treated for chicken pox cause he broke out in really big spots. They realized it wasn’t chicken pox, so they treated him for another condition and put him on steroids and nothing. We ended up doing a skin biopsy and it came back with the diagnosis of a very rare skin disease. So right there we thought maybe he had an immune problem. 

What was the diagnosis?
We were in and out of the kids' hospital back home 8 or 9 times. Then they decided he should be seen by Immunology down at Sick Kids. We arrived here in by air ambulance for some blood work and were sent back home a few days later. It was our first time in Toronto.  Then they called me and said that his blood work came back a bit irregular so they wanted to re-test him. It was just before Easter. We had return tickets booked so we could go home for Easter, but his blood work was still not right. They did a biopsy on his thymus gland. The biopsy came back showing that he had a profound T-cell deficiency.  He doesn’t have any T-cells to fight infections so he has a primary immune deficiency, which means he can’t fight off infections of any kind.  Even a common head cold, if Logan gets one bad enough --- it could be fatal for him. During a 6-month period he got pneumonia 7 times.  Regular medicine doesn't help him. The only option is a bone marrow transplant. 

What has been the impact of this diagnosis on your family?
Oh my God, it has been surreal. Like we came here expecting that he was going to have something wrong with his immune system because he had that rare skin infection.  But then they started talking about his T-cells being low, and a bone marrow transplant, and a biopsy, it was like wow. We've been here ever since and they tell us we’re going to be here --- best case scenario, anywhere from 8-10 months.

What has been the financial impact of Logan's condition on your family?
I had to take a leave of absence cause I was already on sick leave.  Sick leave was only 15 weeks, and that would not have cut it. So I had to contact my employer. My husband had just taken a new job as a fisherman and it was the season for fishing and he had to give that up. So we’re hoping it works out.  Then the next step was okay, let’s give up our apartment cause we’re renting. So my husband flew home to pack up the apartment and put everything in storage. 

What has Ronald McDonald House Toronto meant to you and your family?
I don't know what would would have happened to us without this House. You look at it and you think oh my God, where is it going to go?
It’s been rough, like it’s been a journey.   Just in a month, in a matter of a month our lives have completely changed.  There’s no hesitation, it’s like we do it because we have to do it for Logan, but when you sit down and you really think about it, it’s like we’re in Toronto, we’ve never been in Toronto before and now Jayden’s here and we’ve been living in Toronto for a year, like for the best part of a year.  This House has given us hope and strength.

What’s been the most difficult part so far for you?
To accept the fact that Logan needs a bone marrow transplant, definitely, I would never have guessed it. And he’s got to stay in complete isolation so we’re in the hospital with gloves, caps, gowns.  He’s not allowed to kiss us or anything, so everything, masks, like everything on.  He’ll have to stay in isolation up until the transplant so even if it takes 4 months to find a donor, he’ll stay in isolation and then for 2 months after transplant.

What struck you about the House when you came in for the first time?
The beauty and cleanliness.  It was so clean and new. Our room is beautiful and the kitchen --- we have a place to cook we don’t have to eat out cause that was another thing, are we going to have to eat out the whole time we are here.

What does it mean to you to be able to have your whole family here?
Oh my gosh, everything, there’s not a doubt in my mind that I would my older son Jayden home. My sisters have mentioned it, if it gets too much, send Jayden home beause knowing if he’s down there (in Toronto) and if he gets sick there’s so much more stress and worry.  And having him here yes, it’s definitely difficult to make sure we co-ordinate every 4 ½ hours over in the hospital and we switch out and come back and forth, but it’s worth it. I wouldn’t be able to go through it without him.

Logan underwent a successful bone marrow transplant and is recovering in the House with his family.