Evelyn Sherman had a kidney transplant this past Halloween, just 10 days before she turned three years old. Her dad, Keith, was her donor. In honor of Donate Life Month, Evelyn’s mom, Julianne, reflects on their journey as they near the six-month anniversary of the transplant.
Getting the diagnosis
Evelyn was nine months old when she started falling off the chart. I thought my milk supply had dropped off so we were just sort of waiting it out, but she was still falling off the curve. Then we tried to beef up her diet and that wasn’t working.
By the time we got the diagnosis when she was 15 months old, we had made a tour of Children’s. She had some other physical manifestations of something being wrong. She had a sixth toe. She had wine stains on her skin. So we’d been to orthopedics to have her toe removed. And we’d been to dermatology. We felt like we were ending our tour when we got to nephrology. It was our last stop.
Evelyn was diagnosed with renal dysplasia, meaning that the kidney developed incorrectly in the beginning. She also has kidney reflux and that means that the urine is going back up into the kidneys from the bladder. It often causes a kidney infection, but for whatever reason, she didn’t really manifest that.
When the doctor delivered the news that there was something wrong with her kidney, I remember thinking, “I feel like you’re saying something really important to me and it’s just not registering because you have got to be talking about somebody else.” I couldn’t comprehend what he was saying, that I had a critically ill child.
Home care and the waiting game
For a little more than a year, we managed her care through medications and feeding her through a gastrostomy tube. Evelyn’s main doctor was Dr. Joseph Flynn. I used to tell her, “Dr. Flynn told me you have to take this pill.” And it would work, because she really likes him!
And then everything started to fall apart. I can see the pieces in retrospect. Her iron levels kept dropping lower and lower, so she had to come to the hospital for iron infusions.
It was the nurse who noticed something was wrong. And I’m so thankful for that. She asked, “Does Evelyn always grunt like that?” She had started to grunt for a couple weeks. I was so overwhelmed with everything I thought she just had a little bit of a cough. But she had fluid in her lungs. The nurse had the wherewithal to say, “I’m going to call the clinic before you go – just hang out here.”
I think they knew Dr. Flynn needed to break the news. I remember him just saying in his matter-of-fact way, “She’s going to dialysis.”
I had tried to avoid dialysis in every possible way, because I felt like it was failure on my part. Like, I didn’t do enough to manage it.
We came in for dialysis every other day – four days a week, for two months. In the first 24 hours, she lost 10 pounds of fluid she’d been retaining – 10 pounds! She’s only 33 pounds now. We thought it was growth, but it turned out to be a lot of fluid.
In a lot of ways dialysis was a gift, but we knew it wasn’t going to last. We knew she’d reached the end of her rope.
The writing on the wall
I’d seen the writing on the wall back in March and knew transplant was coming sooner rather than later. We decided that Keith and I would go through the match process.
I got the call quickly; I’m not even her blood type. It was really hard. I’m the mom – you think, I can give her anything. But Keith was a perfect match.
I probably drove the people at the living donor group over at the University of Washington crazy. I would call all the time. “Are the results back? When can we get Keith scheduled?” I was just really intense. It’s my child. I kept thinking, “If I don’t advocate, nobody else is going to. I’m going to take the risk that no one’s going to like me.” Because I could see that she was starting to go downhill.
Transition to joy
Evelyn’s transplant happened on Oct. 31. For us, the transition to transplant was a breeze. It’s still time-consuming and overwhelming. You’re afraid because you need to catch everything; you don’t want her to get sick. We were in November, flu season, so it was a high-risk time. But it was just nothing compared to the shock of having to learn about the disease.
Transplant was a transition into joy. We’re coming up on six months at the end of April and it’s been getting better and better. She just keeps growing. She’s grown more than three inches in four months. She and her younger sister were almost the same size at transplant and it always made me cry, because people would ask if they were twins.
Evelyn understands more and more about the transplant. She’s really funny. We play games with her. We play games with her that daddy’s kidney’s thirsty. “Can’t you hear him crying?” And we’ll make noises. Or we’ll say, “If you take five bites, he’s going to laugh with joy.” And she’s like, “I took five bites!” She’s aware enough to be able to play games.
Going for the kidney world record
We are so grateful that Keith was able to donate, and that his kidney seems happy in its new home. We know that there’ll be multiple transplants in her life. But the first one is the most successful because your body has less chance to build up antibodies. The closest match is a parent, so she’s already gotten the best match she could ever have.
Life before transplant was a continuous wait for bad news. Evelyn was in decline and every appointment or test I knew could be a major turn for the worse. Before transplant, Evelyn was quiet, watching her sisters and friends run around her. She was always cold or tired so she often sat in the stroller at the park wrapped in a blanket. Now she runs and climbs and yells and is the instigator of jokes. She is so alive now I didn’t realize how much her disease hid who she is.
Life after transplant is really simple. Before, she needed medicine three or four times a day, we fed her food purees through her gastrostomy tube, and she needed a daily shot. The first time I packed up the kids to go somewhere after transplant, I remember thinking, “Is that it? That was so easy!” Now we have meds twice a day and that’s it. The best part is that she gets to do things that she didn’t used to be able to do, like go camping with grandma and grandpa, because her care is so simple now that other people can do it.
Our hopes for the future are that Evelyn keeps daddy’s kidney for the world record (45 years) and in the meantime she will continue to develop into this enthusiastic, silly, sweet person we never got to see until after transplant.
Children’s team transplanted 56 organs in 2012, and has transplanted a total of 359 kidneys. In 2014, we’ll celebrate 30 years of providing kidney transplants.
- Children’s kidney transplant program
- LifeCenter Northwest
- Living kidney donation program (University of Washington)
If you’d like to arrange an interview with the Sherman family or member of our kidney transplant team, please contact Children’s PR team at 206-987-4500 or at firstname.lastname@example.org.