By Ruth Huntley

When we were first introduced to the idea of sending our chronically ill child to camp, our family did not immediately embrace the idea. My husband and I had some concerns because of our daughter's lack of enthusiasm. Despite misgivings, we decided camp could be good for her. Karole resisted but eventually agreed to go. Although we were all initially reluctant, Camp Chief Ouray, YMCA of the Rockies turned out to be just what we all needed.

Doctors discovered Karole's chronic kidney failure (I and my husband both carry the gene for Polycystic Kidney Disease) when she was eight years-old. As parents, our natural response was to take immediate control of the situation in order to ensure our daughter would survive her disease. We learned to give her EPO shots (necessary for red blood cell production), made sure medication was taken on time and created a special high-calorie, high-protein diet based on the recommendations of her dietitian.

 Karole tolerated our high-handed approach for a while, and then made it abundantly clear that she would be in charge of her illness. She began her rebellion by refusing to eat the awful (but recommended) concoctions created for her. Under a watchful eye, we turned the responsibility over to Karole. She successfully designed her own diet which both satisfied her tastes and dietary requirements. Next, she didn't want to take her medication when we required it. Eventually, we agreed to let her develop her own system and timetable for taking the medication. Again, she was successful.

 Then at the age of 12, she decided she wanted to spend the summer (alone) visiting family in Washington and Alaska . So, our needle-fearing daughter learned to give herself EPO shots. She enjoyed the freedom of being in control of her own healthcare. When her freedom was curtailed as a result of dialysis, it was a tough blow to her independent spirit.

We all knew dialysis was coming, but the reality was tougher than expected. We approached this challenge with the same positive attitude as always but it was sometimes difficult to maintain. After Karole had the surgery to insert the peritoneal catheter and we started the home dialysis training, the full impact of the seriousness of her condition hit us. Suddenly, we were learning how to clean the exit site, (the opening of the catheter tunnel) set up the dialysis machine, handle alarms, side effects and the most critical part, connecting and disconnecting the peritoneal catheter to the dialysis machine (a multi step procedure requiring masking and hand washing at certain critical moments). Because a small error could equal a huge problem for our daughter's health, it was decided that Karole was too young to perform the tasks herself.

For nearly a year, my husband and I meticulously connected Karole to the dialysis machine at night and disconnected her in the morning. Each time, fully aware we could not make any mistakes. The process was a constant reminder to us of the seriousness of her condition and a constant reminder to her that she was no longer free to do things without her parents. This constant stress takes its toll and eventually you realize that everyone needs a break. This is when we heard about Camp Chief Ouray.

Camp Chief Ouray, YMCA of the Rockies , sits high in the Rocky Mountains above Denver , Colorado . Families from all over the country send their children to enjoy a variety of activities with other kids their own age. Like many camps, the kids sleep in cabins with group leaders and spend their days enjoying what the camp has to offer. What makes this camp unique is the existence of a dialysis facility. Without this facility, Karole would not be able to participate in an overnight activity without her parents. By this time, Karole was 14 and had slipped into a slight depression and did not want to do anything.

She had made the cheerleading squad with her sister but was unable to attend the required cheerleading camp. Going to Chief Ouray seemed like a consolation prize. Although Karole was initially reluctant to attend the camp, she became more enthusiastic the moment we started our drive into the mountains. It was impossible to stay immune to the natural beauty that surrounded us. If we had not lived so close, my husband and I would have stayed in the lovely town near the camp. After meeting the friendly staff, my husband and I were comfortable leaving our daughter in their hands.

 Since both of our children were away for a week, we also took a week vacation. My husband and I returned home. At first, we were concerned about Karole but quickly realized that was a mistake. We learned to relax and enjoy our time together without guilt. The time away from the worry over our daughter's dialysis gave us time to relax and recharge. When we went back to pick Karole up, we were refreshed and in a better frame of mind to handle our day-to-day responsibilities. Now we just needed to see how Karole fared.

Since we did not spend time at the camp with Karole, my husband and I learned about her experiences from the dialysis nurse, counselors and our daughter. When Karole arrived at Camp Chief Ouray, she was timid and shy but thought everyone was nice and friendly.  She thought the dialysis facility where she would sleep was comfortable and cozy. Although she slept in the facility, she spent her days with the regular camp group. She participated in the same activities as the other campers: hiking, horseback riding, crafting and swimming. Karole began to notice everyone had things they are unable to do; they had their own problems and fears even if they did not have a chronic illness. At night, Karole slept with the other dialysis patients of various ages. She saw her fear and despair in their eyes and decided it was time to change things. The other patients watched in awe as she gave herself an EPO shot. When it was time to swim, Karole surprised everyone by boldly wearing a two-piece bathing suit (which revealed both her scar and catheter). "You wear a two piece?" they asked in disbelief.  Most patients are too embarrassed to wear close fitting clothes or a bare abdomen. One girl quit a swim team because of it. "Why not?" Karole replied, "You just tuck the catheter under the elastic" (later, we heard the girl had resumed her participation on the swim team).

When they returned from swimming, Karole was the only one who knew how to clean her exit site. While the nurse helped the younger kids with their exit sites, Karole coaxed the older kids to come with her to learn how and proceeded to show the other kids how to clean their exit sites. At night, they began to entertain themselves with ghost stories. The mood of the "dialysis kids" became brighter and happier. When we arrived to pick Karole up from camp, she greeted us enthusiastically and insisted on showing us around. She felt free again. It was obvious that Camp Chief Ouray had restored Karole's sense of self.  This was a huge turning point in Karole's life.

Now that Karole's independent spirit had re-emerged, she was a force to be reckoned with. She asked if she could take control of her dialysis so that she could go to the cheerleading camp. There were some concerns, but after she proved to the medical staff she was mature and capable enough, she was allowed to take control of her dialysis. Karole has since received a kidney transplant but continues to challenge life.  She participates in the academically dynamic International Baccalaureate Program, earned a Black Belt in Kempo Karate and has just returned from an archeological dig in England . Karole has also enthusiastically involved herself in volunteer work. She co-created a fundraising show called "Fusion of Arts" benefiting The Children's Kidney Fund. Because of its success, the project evolved into a new non-profit organization called "Fusion of Arts." But most of all, she would like to return to Camp Chief Ouray and help out at the dialysis center and hope another "kidney kid" finds their future.

Ruth and Karole Huntley live in Colorado Springs , Colorado .

This article originally appeared in the September 2002 issue of aakpRENALIFE, Vol. 18, No. 2.

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