My visit to Roman, Madison and Hailey's elementary school

Submitted by Stan Shaw

This morning I'll be arriving with my Trek carbon-fiber bike, my riding jersey and helmet to walk into a full school assembly at Roman, Madison and Hailey's elementary school to talk about our upcoming ride and Cystic Fibrosis.  Jacqueline, the children's mother, will be coming to help out.  This will launch a school-wide fundraising effort for our Ride!   Roman has been in hospital this week for a lung function 'tune up', but there's a chance he may be able to be temporarily released on a morning pass so that he can join us, after which he will be returning to continue treatment.   Madison and Hailey will be there too, of course.

To be honest, I'm rather nervous having to stand in front of 200 kids. I've done lots of presentations before to adults, but this is a REALLY tough audience to please!  I am so looking forward to it, though. Roman, Madison and Hailey are looking forward to it, too. The school assembly begins 10:45 AM, but here's an on-line version of what we are presenting.  Wish me luck!

- Stan





Update - after the presentation
- Submitted by Stan Shaw

This is an event I will remember as one of the highlights of the entire ride - and the tour has yet to begin! I arrived on time, bringing my bike, its lights flashing, and wearing my full riding gear, complete with helmet.  I didn't actually ride my bike to the school.  I just brought it along for "special effect".   Close to two hundred kids came filing in with their teachers and quickly seated themselves on the floor, in front of the projector we had set up to display my slide show.

It was great seeing Roman there with his mother. For a while, we weren't sure whether he would make it. However, he managed to be temporarily released from Children's Hospital on a morning pass so that he could attend the event.  Madison and Hailey sat among the kids, while Roman assisted Jacqueline and I during the presentation.

I quickly found out that the vast majority were enthusiastic bike riders. So, we had a lot in common! We talked about some of the big bike rides they had done around home and on holidays. The kids had many questions around our ride to Banff, but even more about Cystic Fibrosis.

Roman and Jacqueline, his  mother, gave a demonstration,  holding up a maple leaf with fine branches to give an idea of what lungs look like. Next, Jacqueline had the kids stand up and run in place for a few minutes.  The floor reverberated with stamping feet. She then asked them to breath out of a straw that Roman had given out while they were coming in the door.  Roman explained that this is what it is like to breath for him when his lungs are filled with mucus.  We then talked about their treatment.  Jacqueline showed a table laden down with bottles of different medications (empty, of course, for demonstration purposes), they take every day .





Together, they showed an IV set that Roman had just finished using before he left the hospital that morning.





Roman then showed one of the breathing procedures he does every day to improve lung function, in combination with inhaled medications.





We went on to talk about the ride, and what students at the school could do to help.  When the principal started telling how the kids were going to raise funds over the next ten days, you could feel the energy in the room. The enthusiasm was tremendous.

And what great questions!!

Question:  "Does Cystic Fibrosis affect only the lungs, or does it affect other organs"?  Roman's answer - "It affects my lungs, digestion and kidneys." He also went on to say that, for him, it affected the liver as well."

Question: "How do you get Cystic Fibrosis"?   Roman's answer - "You get it when your mother and father are carriers, and if they are you have a one in four chance of getting it; and when you do, you are born with it."

Question: "How many pills do you take every day"?  Roman's answer - "About forty.  My sisters each take about twenty."

We didn't have time to answer all the questions. The school principal, however, invited the kids to write down their questions, so that Roman and his sisters, with Jacqueline could help answer them.

Fundraising for GearUp4CF aside, the goal Jacqueline and I had today was simply to raise awareness with Roman, Madison and Hailey's schoolmates.  The ride was a wonderful opportunity for this. And, judging by the enthusiastic response we received, it was very successful. The kids will continue to follow the tour, as the school is setting up an Internet display so that this Rider's Journal is shown during recess every day during our ride.

Roman is back in Children's hospital now, where he will be until sometime next week for his 'tune-up', a special two week series of treatments designed to help improve lung function.  If all goes well, he will be out of hospital  sometime next week.  If so, we'll all be meeting together with Madison, Hailey and their parents, at the end of the first day of our ride in Harrison Hot Springs, on Saturday, June 19th.  It won't be long now.  Only nine days to go!

- Stan


Would you like to sponsor a favorite rider? Click on their name anywhere on this journal to open their "bio" on the Canadian Cystic Fibrosis Foundation GearUp4CF web site, click on the button "Sponsor this Rider", and you will join our team!