Luke

Luke first came to Phoenix Children's when he was two weeks old. The next day he was diagnosed with end-stage renal disease. When he was still en utero, a valve in his penis caused urine to back up through his bladder, which is what caused the kidney damage.

He has had 16 surgeries, four of them before he was even six weeks old. He was on dialysis at home starting when he was only six weeks old. Each night for 12 hours he was hooked up to a dialysis machine. This past April, Luke had a kidney transplant and is doing well.

How has Luke's disease affected him?

It has affected the entire family. Luke has gone through 16 surgeries, and has spent half his life in the hospital. He's fed by g-tube. This is a tube that is surgically placed into his stomach and he is fed a liquid diet, so he doesn't eat by mouth. He is tired a lot of the time and is behind both physically and mentally. His bladder does not work properly, and in November of last year his urologist used his appendix to form a channel between his bladder and his skin. I use it to put a catheter straight into his bladder every five hours to drain his urine.

How often is Luke treated at Phoenix Children's?

His longest hospitalization was two months when he was first diagnosed and began dialysis. But he has been in and out of the hospital ever since.

How would you describe the care you've received at Phoenix Children's?

I love Phoenix Children's and wouldn't take Luke anywhere else. The Hospital staff and volunteers are great. We love the fact that they have playrooms for the kids. It gives them a place to go so they can get out of their rooms.

What is the most difficult aspect of Luke's treatment?

It is hard to be away from the rest of your family that is at home. It is also hard to help the child understand that what we are doing to him is necessary to keep him alive and healthy.

How has Luke's diagnosis affected your day-to-day life?

Our day-to-day life will never be the same. When he was on dialysis he was on it for 12 hours at a time. If we had to go somewhere in the morning, we had to make sure that we got him up on time to get off [the dialysis] in the morning in time to leave. Now I have to make sure that he gets all of his medications. He has speech and feeding therapy every week, as well as an appointment with his nephrologist every week, and blood work each week. He also has physical therapy every other week. Luke is immuno-compromised, which means that he also gets sick a lot. Even when he has a fever it's likely he'll be admitted to the Hospital.

Is there an aspect of the care you've received at Phoenix Children's that really stands out in your mind?

The hospital has become a second home to us and that would not be possible without the great staff. The nurses and doctors have made us feel comfortable. It also helps to talk to other parents who are going through similar situations.

How has Luke's illness changed how you view things?

Life is short. You have to tell everyone that you love them every time you see them because you never know what tomorrow will bring. Also, be happy for what you have. When you think times are bad, there is always someone who has it worse.