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The ‘kidney twins’

July 1, 1993

The ‘kidney twins’

By Brandon Reid, Assistant Editor

Seven-year-old Luke Stone would rather stay inside and play video games than go outside and play with his friends. He says it’s because he doesn’t like all the bugs, but his parents know it’s because the sun is too painful for him.

Luke was diagnosed with cystinosis, a rare metabolic disease that affects about 400 people in the United States, when he was 3. In attempts to correct the disease, Luke’s father, Mike Stone, 39, will give his kidney to his son in a transplant May 19 at Stanford University Hospital in California.

Cystinosis is characterized by an abnormal accumulation of the amino acid cystine in various organs of the body such as the kidney, eye, muscle, pancreas and brain. Children with the disease form crystals in their eyes, which can be extremely painful when exposed to sunlight.

“The sun is painful—he’s photophobic because of the corneas,” Mike Stone said. “So when he’s out in the sun, if he’s not wearing dark sunglasses, it hurts. Even at night, sometimes if he’s really tired, the television will bother him.”

Although he’s 7, Luke has the bone structure of a 3 1/2-year-old. Failure to thrive (failure to grow), is one of the metabolic effects of the disease. Those suffering from the disease also experience excessive thirst and urination, rickets, episodes of dehydration, and have an increased level of cystine in their white blood cells.

“He started calling us the ‘kidney twins’ a couple weeks ago,” Mike Stone said. “And I talked to him about it. And I remind him one of the side-effects of having cystinosis is your appetite. Your desire for certain foods is very, very limited. Crave sodium. Crave water. So the diet has been restricted to about four things: tacos, pizza, potato chips, and bacon. Now, bacon he’s off of. But, I’m serious, that’s about it. He’s been living on that for four years. But I remind him, and I tease him, that he’s going to want alligator tail, he’s going to want to have shark meat, he’s going to want to eat things he never even knew he wanted once he gets his new kidney, because his tastes will change.”

Luke has been undergoing hemodialysis for about a year and a half. Hemodialysis is a daily process of removing blood from the kidney, purifying it, adding vital substances to it and returning it to a vein.

“Every night for basically between 11 and 12 hours, he has to fill, dwell and drain, and each cycle takes about an hour,” Mike Stone said. “And the solution basically does the work of the kidneys … so after 12 cycles, his body doesn’t have to rely on the kidneys like it’s supposed to.

“Initially, actually it was very rough … the first six months were hell to be honest with you. They were hard on him, they had to do an operation to move the catheter inside … it was in a bad spot causing pain … the machine had alarms that would go off all night. It was almost worse than having a newborn. Having a newborn can be pretty rough, but try having one for six months straight. They told us that his inside had to callous up—it had to get used to it. And, really, for the last few years, he’s been doing great and it’s really worked for him.”

Mike and his wife Linda pulled Luke out of Marsh Elementary School in January in attempts to limit the number of germs he came into contact with. Mike Stone said it was essential that Luke stay healthy for the transplant.

“He loves school, and his friends made a video at school for him, and they sent it to him, and it was really nice,” Mike Stone said. “But, I really have to say, he loves being at home. Health-wise, he’s doing great, and I’ve been told he’s going to be able to go into the second grade, so that’s all we care about.”

Mike Stone said although Luke’s disease has been strenuous for the entire family, Luke’s siblings, Alex, 8, and Makayla, 4, have handled the pressure well.

“You know what, the kids, I don’t want to say just resilient, they have a lot of compassion and I think they’re not selfish,” Stone said. “And Luke is not demanding, either, given his situation. In fact, Luke is one of the most loving kids I’ve ever seen in terms of his sharing. He in no way wants to be special … no way, not in the least. If anything else, he goes out of his way to make sure that his brother and sister come first. He’s an incredible kid.”

Mike Stone said he believes the situation has brought his family closer together.

“I’ll tell you it hasn’t been easy,” Stone said. “But, great pressure makes a diamond. And I do think that it has made us a closer family unit. I hope, if my other kids get anything out of it, it’s we’re all in this together, and we should be willing to help one another because we’re a family and we love each other.”

Doctors have said Luke can expect to get about 20 years out of the kidney. Many cystinotics have two or three transplants throughout their lives. Mike Stone said he and his wife chose to have the operation at Stanford because of the steroid-free transplant the hospital offers. Stanford is one of only a few hospitals in the country that offer steroid-free transplants.

“Stanford is steroid-free and what that means is less weight gain, less acne issues as an adolescent,” Mike Stone said. “I mean, look, we don’t want our Olympic athletes, and we don’t endorse athletes at all to take steroids. Yet, we pump our transplant kids full of them because that’s what we’ve done for the last 15-20 years. And, yes, it has been proven to help aid in rejection. But what happens is they get these kids on the steroids and they stay on them.”

The Stones will be staying at a two-bedroom furnished apartment in Silicon Valley, Calif., for most of the summer. The housing complex, owned by Oakwood Corporate Housing, took $1,000 off the $3,000 monthly rate to help the Stones afford the stay.

“We were going to stay at the Ronald McDonald House, right there after the operation,” Mike Stone said. “But, given that Luke’s siblings are coming out, we want to

set up base camp. Five days before the surgery we’ll be out there. So the other kids are out there because it’s a family experience. All his [brother and sister] really know of him is he’s got a medical situation. And they’ve seen him on dialysis for the last 18 months.”

Mike Stone said he’s getting anxious about the transplant.

“You know what, yeah, I’m nervous,” Stone said. “I wanted it done yesterday. I can’t stand the waiting. Me, I can’t stand waiting. Luke, he’s probably, ‘Yeah, we can do it next year, that’d be fine with me.’ No, I want to get it over with. As he said, we’re the kidney twins. If I can see my son feel better, have a better appetite, start growing … I just can’t wait to see that. When he was younger, he had rickets, anemia, all that kind of stuff. So I want to see that change and I want to know that my kid is healthy.

“Now he takes so much medicine every day that, hopefully for Luke, the antirejection medicines he will be taking for the life of the kidney he’s used to now so that’s not going to be a real shocker,” Mike Stone said. “And he’s already had an operation for the catheter for the dialysis. But that’s the part that scares him, because he says, ‘They’re going to give me the sleeping medicine, aren’t they?’ And it’s coming out of that that’s the hard part for kids especially. But, for me, although he doesn’t know this yet, the incision for me is about three or four inches. The incision for him can cover pretty much his entire sternum … about 12 inches. So we don’t talk about that. He’s a little nervous, but also I can tell, he knows it’s coming … he knows very well what’s coming.”

Both Mike and Linda are a close enough match to Luke’s blood type to be donors. Yet, Mike said there was never a question in his mind that he would be the donor because he knew Luke would want his mother by his side when he woke up in intensive care after the surgery.

“A lot of people say to me, ‘Well, why do you have to be the donor?’” Mike Stone said. “Well, first of all, that’s a no-brainer for me. I’d do it for any of my kids and I’d do it without question. When it’s your kid, you don’t really think twice about it. All I can honestly say is, if you’re a parent and you do, you’re selfish. I mean, if you’re going to be able to bring life, then you should be able to give life if that’s what is called for. I mean responsibly. So I wanted to do it yesterday. I just hope he gets 20 years out of it.”

For more information about cystinosis, visit the Cystinosis Foundation Web site at www.cystinosisfoundation.org, or contact the Cystinosis Foundation at 604 Vernon St., Oakland, CA 94610, phone 1-800-392-8458.

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