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Stefan - Self-infusion: a thank you

by Mark and Stefan Lubinski, Toronto, Ontario

I have trouble expressing myself both in writing and emotionally, yet now I will attempt to do both. As parents of a child with hemophilia, we encounter various challenges, stress and disappointments. When my wife told me that our son Stefan asked if he could go away for a week with his friend Julian and his family to a cottage last summer, I was lost for words.

I recalled becoming very frustrated the time we tried to send our son to a week-long spiritual camp, which was an hour from our home. We explained hemophilia, infusions and prophylaxis to the staff, and offered for my wife to drive there to infuse our son every second day. We were told by the administration that it was too difficult for the nurse to administrate the infusions, that it would be unfair for the other children if my wife came every other day, and that the children would be doing physical activities that our son could not participate in. My wife and I choose our battles carefully because we do come across them from time to time and we realized this was probably not the camp for our son.

So when my wife approached me, I reminded her of our past experiences. We wondered if we were ready for another disappointment and if it was fair to ask the parents of our son’s good friend to take on the extra responsibility that they were unaware of. Neither our son’s friend nor his parents knew about Stefan’s hemophilia. My wife felt comfortable sharing this medical condition with them, I told her to go ahead and speak with Julian’s mother. I asked my son to write about these experiences from his own perspective:

My friend Julian asked me to come to his cottage last summer. I really wanted to go, but I said, “I’ll think about it”, because of my hemophilia. Having hemophilia means that if I don’t get an infusion every few days and I hurt myself, I could have a very bad bleed. I was only 11 years old at the time and before that my mother had always given me my infusions. I thought if I learned to do it myself I could go to Julian’s cottage. The trip to Julian’s cottage was after my two weeks at Camp Wanakita. Wanakita is a regular summer camp with a special building, “The Bayer Den”, where hemophiliacs get their injections. My parents agreed that if I could learn to self-infuse at Wanakita, I could go to Julian`s cottage. At Wanakita I tried my hardest to selfinfuse and the nurses guided me through it. I succeeded! I practiced at home more and more until I was really good at it.

The week before Julian’s cottage, I went camping with my family and practiced there too. We drove to Muskoka to drop me off after our camping trip. There my mother and I showed Julian’s mother, Olenka, how the injections are done. His father, Ivo, watched and seemed curious.
When my parents left I was still a bit nervous but really happy because I was with one of my closest friends for a whole week. I was nervous because of my hemophilia and doing the infusions by myself. Everything went fine even though each injection usually took two tries. My friend’s mother helped me by putting the cotton ball on after I pulled out the needle and she made me feel more secure just by being there. The hardest time to infuse at the cottage was during a power outage caused by hard rains and strong winds. We had to use flashlights. I tried two times and they were both puffy because the needle was out of the vein. We gave up because it was the last day, so after that we just stayed inside and played cards. I felt proud of what I had accomplished. Now I am used to giving myself injections and I do it all the time.

I would like to say thank you to: YMCA-Wanakita, the nurses and staff at the camp, the pharmaceutical sponsors, the Just the Guys nurses and regional coordinators, the hemophilia societies, my wife for infusing my son all these years, and the biggest, most sincere thank you goes to Julian and his parents Olenka and Ivo, for asking my son to come with them that summer and for being so supportive. They never hesitated to take Stefan with them when they found out about his life-altering medical condition. Thank you Olenka, Ivo and Julian for helping my son and us to overcome a barrier of past disappointments and for giving my Stefan what was, I am sure, one of his greatest accomplishments.

Parents remember and are proud of their children’s first goal, their first home run, a first place finish… Stefan in the summer of 2009 made me the proudest father with his accomplishment.

Thank you, Stefan.

- November 2010