Published: LifeLines for Health, vol. 7 (Spring 2016)
Written by: Carri Nease
Our family first attended Inhibitor Family Camp in 2012 when the boys were six (6) after patiently waiting since we preregistered them at the age of four (4)! We didn’t know what to expect, but we were all very excited.
After a LONG Trip, we arrived at The Painted Turtle.
This would be the first weekend we had ever walked away from our boys and not worried about them (much). The camp pairs a family with a volunteer family pal who provides a second pair of hands keeping track of the kids so that the parents can have breathing room to attend sessions while the kids can run off and participate in LOTS of activities. Camp was teaching us it was okay to let go and let someone else take over for a bit.
It felt good knowing that for the most part, camp was set up for pretty much anything we could throw at them on a normal day with hemophilia and inhibitors. Inhibitor Family Camp has only gotten better over the years since our first arrival. Comprehensive Health Education Services, with an education grant supported by Novo Nordisk, increased the camp weekend by one day, which allowed us to actually recover some from the travel and enjoy the feel of the festivities and more.
This year, we weren’t sure if we would be able to attend. Tyin was having a particularly rough time and we weren’t sure if he would be healthy enough to make the trip. He worked hard though, and physical therapy cleared him so we could make it.
Tyin walked and played more this weekend than he had in the past several months because of the activities and encouragement of friends. We had so much fun!
help of nurses Kathy Byrne and Brianna O’ Neil (who are members of CHES’ traveling infusion nursing team) and The Painted Turtle’s Well Shell staff. Tyin was able to infuse himself for the second time and Connor worked through his fear to get nearly to the point of his first stick! He actually managed to hold the needle and touch where he would have infused. This is a huge step for someone with a deep needle phobia.
Connor also performed with a camp buddy in the talent show - another huge milestone!
Registration was a bit of a challenge but it is always worth it.
As a parent attending Inhibitor Family Camp, I get the strength and support I need, both from the other parents AND from the CHES staff and The Painted Turtle staff including the Well Shell Staff.
Inhibitor Family Camp is the one event we look forward to each year where the kids are able to hang with kids like themselves. It helps them to hear that they are not the only kids with hemophilia who sometimes get multiple infusions in a day to combat a bleed. Or get stuck every day in hopes of beating back inhibitors so they can have a regular childhood. Inhibitor Family Camp is the Great Equalizer and we are eagerly looking forward to returning next year.
Despite the fact that it’s only a few short days, I leave feeling renewed and ready to tackle another year.
Inhibitor Family Camp at The Painted Turtle provided by CHES is the only “nearly guaranteed” camp we can be sure to attend in a year - health permitting.
Inhibitors, bleeds and complicated treatment protocols have made hemophilia camp through our local chapter something we can’t count on right now.
We do sign them up in hopes they can attend- but last year only one of the boys could go because the other had a bleed. I was in the ER with a disappointed child the day the chapter flew to camp.
Inhibitor Family Camp is the one event we look forward to each year where the kids are able to hang with kids like themselves. It helps them to hear that they are not the only kids with hemophilia who sometimes get multiple infusions in a day to combat a bleed. Or get stuck every day in hopes of beating back inhibitors so they can have a regular childhood. Inhibitor Family Camp is the Great Equalizer w and we are eagerly looking forward to returning next year.