Tot shows courage

by Phil Ambroziak

Sometimes the biggest display of courage comes from the smallest of people.

And, for two-year-old Lincoln Bannister of Meadow Lake, that courage comes in the form of a string of assorted beads.

Shortly after being diagnosed as chronically ill, Lincoln became a proud participant in the Beads of Courage program, an initiative supported by the RoyalUniversity Hospital in Saskatoon to assist children like Lincoln during some of the scarier experiences they must undergo on a regular basis.

“When my son was around 15 months old, he was diagnosed with hypogammaglobulinemia, which is a big word to say he doesn’t produce immunity by himself,” explained Lincoln’s mother, Jen Bannister. “Since then, we’ve had to take him to Saskatoon once a month for treatment.”

This treatment involves taking specific immune cells from blood donors and introducing it to Lincoln’s blood supply.

“While at RUH this past February, we were told about the Beads of Courage program,” Bannister continued. “It’s like keeping a journal of every needle prick, emergency room visit, treatment and whatever else he’s experienced. Lincoln receives a special bead for these sorts of things. It’s to encourage him, and other kids in the program, to be brave when faced with a visit to the hospital. Each colour or shape shows something different the child has gone through.”

Jean Baruch developed the first Beads of Courage program while working on her PhD in nursing at the University of Arizona’s College of Nursing. It was initially launched at Phoenix Children’s Hospital in 2004.

Today, the program has been implemented in more than 140 children’s hospitals throughout the United States, Canada, New Zealand, Japan and the United Kingdom. It’s anticipated the program supports close to 30,000 children world-wide.

“You see other kids at the hospital with their own strings of beads,” Bannister noted. “It’s a way of truly telling their story and knowing what they’ve gone through and continue to go through in their young lives. Because of his age, Lincoln can’t really tell you about his feelings, but we always bring his bead bag with us when we go to the hospital and he knows he will always get another bead after his visit. It helps to noticeably reduce his anxiety.”

Bannister added the program has also been a great benefit to her entire family.

“We’ve found it very helpful,” she said. “When he gets his treatment, we see other families sitting there, and we see their beads. The beads can often serve as a conversation starter, which is great because there are times when you don’t know what to say to a parent whose child is experiencing something like this.”

Hypogammaglobulinemia is a disorder that is caused by a lack of B-lymphocytes and a resulting low level of immunglobulins (antibodies) in the blood.

“When Lincoln was six months old, he started getting really sick,” Bannister said. “His older sister could have a runny nose and two days later he would have a chest infection and would have to go to the hospital. We saw so many specialists and finally I asked his paediatrician to have him tested for an immune disorder. Sure enough, his immune levels were around zero to 0.2 per cent.”

Bannister went on to say there is a chance her son could outgrow his current condition, but there is also a significant chance he could need treatments for the rest of his life.

“With his treatment, if he gets a cold he’s just like any other regular kid,” she said. “It starts to get worse, however, near the end of the cycle when it’s almost time for his next treatment. We’re just careful to properly wash our hands and wipe noses when people are sick. If someone is really sick, we try to keep them away. We also have to be careful with the medications he receives and with vaccinations. He can’t have certain vaccinations because of the treatment he receives.”

On top of all this, Lincoln has other medical issues as well.

“He had feeding issues as a baby, so he’s been a little slow to grow,” Bannister continued. “He also has some developmental delays, as well as hydrocephalus, which is extra fluid in the brain. He’s lucky he’s never needed surgery for it, we just have to monitor his head growth.”

Bannister concluded by stressing how much she wants to tell others about the Beads of Courage program and what it can do for sick children in need of a little extra support.

“When I was stringing his beads, I began bawling my eyes out because it reminds me of everything he’s gone through and truly validates his struggles,” she said. “I know not every child gets sick like this and I know there are other children out there worse off than Lincoln, but it’s great to have a program like this to help you get through these difficult times.”


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