RMH

Brayden cannot wait.  

“I still have presents to open when I get home,” he says.

It’s the third week of January and he is counting the days til he gets to celebrate  Christmas. His gifts remain safely tucked underneath the tree at his home in Stayner, near Collingwood, ON.

“We put the tree up in our House before we left.  And I remember everyone saying to me, I think it’s a little too soon.  And I said, let’s do it and it’s done just in case,” says mom Vivian.  Her intuition paid off. 

Vivian brought her 12-year-old  son  to Toronto in early November.  Brayden was scheduled to undergo a routine procedure at SickKids.  What was supposed to be a short visit turned into four surgeries, tests, recovery and a stay of more than two months and counting at Ronald McDonald House Toronto.

“We didn’t dream we would be back here so soon,” says Vivian.

SCHOOL TRIP
“It was a big surprise. He had never been sick,” Vivian remembers. 

All of that changed in early 2011. Brayden went on a school trip for a few days, staying in a cabin, cross-country skiing, and building survival huts along the way.

He returned from the trip with an ear infection, and took antibiotics. Rather than improve, Brayden’s condition worsened with frequent vomiting, diarrhea and a fever now part of his symptoms. Then his mom made a horrifying discovery, “That morning when he got up, his urine was black.”

Vivan carefully kept a sample of Brayden’s urine to show doctors when the family went to the emergency room.

“Brayden’s temperature was through the roof.  He was vomiting blood.  Blood was coming out of his stool. It was just a nightmare,” Vivan recalls.

THE DIAGNOSIS
Two quick hospital visits followed and then in May 2011, Brayden was sent  to SickKids. Doctors discovered his kidneys were not working. 

“Immediately they decided to do a surgery to put a Central Venous Line (CVL) through the jugular, down past the heart and through the chest.”  A CVL is a catheter that is placed into a large vein in the neck, chest or groin area.  The CVL administers medication or fluids.  It can also obtain blood tests.

“They had to give him chemotherapy, seven doses, which was quite a shock.  I thought that was only given to cancer patients.  The chemotherapy is to suppress the immune system because his just kept going and it kept thinking that there was an infection and there wasn’t.  It soon attacked the kidneys and rendered them both gone,” says Vivian.

Exhibiting an infectious positive attitude, Brayden adds, “The good thing was that it only attacked the kidneys, because there were several organs it could have attacked like the lungs, the heart or the brain. They said you couldn’t have caught it in any earlier state. Now was the perfect time to catch it before it attacked any other vital organs.”

He continues, ““Knowing that it could be worse. I have kidney failure but there are other kids out in the world who have cancer, there are other kids out in the world missing limbs.  There are kids in Africa who don’t have health care, who have kidney failure but don’t even know it.”

Brayden then declares, “It just inspired me to be a paramedic, because when people are in the ambulance and they are all sad, I can be in the back of the ambulance and tell them my story of how I have kidney failure and I feel the same pain they do. And I can make them feel better.”

STAYING AT RONALD McDONALD HOUSE TORONTO
During the first two months of his initial five-month-long hospital visit, Vivian stayed with Brayden in his room at SickKids, on a cot, before getting a room at the former Gerrard St. House.

“We were really impressed with the old House,” says Vivian. “It was a godsend.  It meant that we could start to feel like we were moving ahead and we were getting closer to going home. I liked the security too. I felt secure and that was one of the concerns.”

They are now well into their first month at the new House. “It’s a very supportive place. Very welcoming. It almost feels better than home,” says Brayden.

Both mother and son never anticipated such a lengthy stay this soon and especially over Christmas.

‘HAVING TO ACCEPT THE CHANGES’
“A lot of people don’t even know that I am sick,” Brayden beams. 

Indeed, looking and listening to him, one would never know that he wakes up every morning and vomits several times because of his condition, before going to school, or that he will never be able to play hockey again because of risk of injury, or that he is hooked up to a machine for 10 hours every night, which pumps a glucose-like fluid into his body that removes food and waste product. Or that that every other day he undergoes hemodialysis. Or that he is fighting an underlying condition called c-Anka (Cytoplasmic antineutrophil cytoplasmic antibodies), an autoimmune disorder which occurs when the ammune system goes into overdrive and starts to kill off good blood cells. 

 “It was overwhelming to hear all the medications that Brayden is going to be on for the rest of his life.  Some of them even cause cancer.  They are very expensive.  The side-effects of them are also detrimental. So there is that to deal with as well.”

One could never tell that Brayden’s mom is his primary health provider. That every morning she takes his blood pressure, checks his weight and records the data, then drains his fluid bag and empties it before determining how much fluid he will need that night. Or that she had to receive special training to navigate the 85 boxes of medical supplies delivered to their home following Brayden’s 5-month-long initial hospital stay.

When mom is asked to describe the hardest part of the journey so far, Brayden steals her thought saying, “Having to accept the changes.  Having to accept that you can’t make me better.” She agrees.

IMPACT OF THE HOUSE
Mother and son are most appreciative of the opportunity to stay at the House, not once but twice and likely again in the future.They are  thankful for the volunteers and staff at the House whom they interact with every day. “They are the people that keep the families going, keep the families happy. They are the people who help the families the most.  Without them, there would be no House for people like me and my mom to stay and feel welcome. To have a place like home,” he says.

Vivian adds, “I would have to say that by supporting an organization like RMH Toronto, your dollars are really being put to good use in the community.  It may be in Toronto that RMH Toronto is located, but it affects each one of us in every town, city, community.  Your money is going directly to the House and being put to good use.” 

Brayden and his mom stayed at Ronald McDonald House Toronto during two separate visits between 2011-2013, a combined 73 days.