Let me tell you about my son Rhett and the amazing team of providers at Children’s Wisconsin who have helped him live his life to the fullest. 

Upon meeting Rhett, the first thing you would notice about him is that he is tiny. A typical 9-year-old boy weighs about 63 pounds. Rhett weighs 47 pounds. Next, you would probably notice that he wears glasses. He has been sporting spectacles since he was 3 and he always picks out fun colors. His Children’s Wisconsin ophthalmologist, Jacob Martin, MD, and his team are always so great at getting him to cooperate so they can get his prescription and sizing. I honestly have no idea how they do it. It’s amazing.

You would also notice that he has Trisomy 21 or Down syndrome — he has been followed by the Down Syndrome Clinic at Children’s Wisconsin for most of his life. But what you wouldn’t expect from him is his ability to introduce himself to you with, “Hi, name’s Rhett.” Or how he can carry on a conversation with you, especially about anything Mario or Luigi related, his most recent Lego build, his favorite holiday, Halloween, and all of its spookiness, his ability to read anything to you, and make jokes. For example, every morning he greets me with, “Good morning, Mom, name’s Rhett” or “Mom, I have a question for you.” When I ask, “What is your question?” Rhett replies, “None of your business.” 

When his shirt is off, you will notice a lot of scars on his chest and abdomen. Five to be exact. First you would notice a big, beautiful scar and two small, round scars from his open-heart surgery at just 6 months old. Michael Mitchell, MD, from the Herma Heart Institute, performed that life-saving surgery. That scar tells the story of a baby that was born with a serious heart defect known as tetralogy of Fallot. Rhett continues to be followed by his cardiologist, Benjamin Goot, MD, who remembers him between visits. 

The next scar you would notice is on the upper right part of his chest. That’s where his port was placed during his leukemia treatment. Rhett was diagnosed with B-Cell Acute Lymphoblastic Leukemia in February of 2021. His pediatrician, Ryan Hatchell, MD, worked swiftly to get a diagnosis when we noticed things weren’t right with Rhett. When they say a cancer diagnosis knocks the wind out of you, that’s exactly right. In 2021, Rhett spent a total of 95 days at Children’s Wisconsin. 

The first 44 days took a toll on him and his tiny, frail body. He lost 12% of his weight. We worked with a nutritionist and Rhett eventually needed a feeding tube for his nutrients, water and, most importantly, medications — medication that would wreck his body but ultimately save his life. He stopped walking and he needed a physical therapist to teach him how to use a walker and a wheelchair. He still uses his walker, sporadically, which he has named Skywalker. It even has a parking spot at his school. 

The last scar you would see is a small hole on his bladder. During his cancer treatment, his bladder started to give out. We worked with urologist Elizabeth Roth, MD. Rhett ended up using a catheter for a few months. I was out one night and I got a call from my husband saying Rhett had just pulled out his catheter and was standing there with a look on his face like, “What is this thing? I don’t need it anymore.” And just like that, he didn’t! 

Rhett fought for a total of 796 days before he was cancer free. We came to know many specialists during these long days who guided Rhett’s care and gave us the reassurances and knowledge we needed to get us through each day. 

If our family is out and about, you may notice Rhett is in a medical stroller. He has low tone, and hypotonia, which means he is super flexible. You should see him bend his legs behind his head or run. He resembles a Muppet and he’s a total character. He tires easily from working hard and from years of chemotherapy, so we also see the Physical Medicine and Rehabilitation Clinic. Hannah Belknap, APNP, and her team have helped get Rhett fitted for not only his medical stroller but also his shower chair to help him bathe independently.

Something that didn’t leave a scar — at least not yet — is that Rhett can’t feel pain. And he can’t regulate his body temperature. I’m also convinced that he can’t smell or taste. We have been seeing Shamshad Shahrukh, MD, in the Neurosciences Center, trying to figure out how to help Rhett. We also work closely with Jessica Phelps, MD, a child psychiatrist, to help Rhett manage his ADHD, OCD, sensory processing differences and anxiety. She truly sees Rhett and helps me understand him more. 

To help us manage the countless number of doctor appointments, Rhett is seen by the Complex Care Program. They have been pivotal in helping me keep everything organized and find the right clinic so Rhett can get the help he deserves. 

We are grateful for the more than 40 specialties Rhett has seen in his 9 years. He is still currently seeing more than 20. Though still a mystery, Rhett is alive and thriving, all because of his care team at Children’s Wisconsin. It is not lost on us how special Children’s Wisconsin is. Rhett’s medical care is always phenomenal. They say it takes a village to raise a family. Children’s Wisconsin is our village. 

I would travel thousands of miles to get the care Rhett needs — any parent would. Luckily, we don’t have to because Children’s Wisconsin is right here for us. Rhett’s medical team took such loving care of him. They treated him as if he was their own child and I’ve seen them do the same for other children there. I don’t know what my family would have done without Children’s Wisconsin.

As you read this, many other Wisconsin kids need the expert care Rhett has received. Please make a year-end gift to Children’s Wisconsin today by visiting childrenswi.org/4kids. Your generosity makes a life-changing difference for Wisconsin’s kids and ensures they can shine brighter than ever.