She is 9 years old. Her hair is the color of wildflower honey. She has a cherub face. Her name is Luxe, which is Latin for light. Her mother chose this name as soon as she knew she was pregnant.
Luxe has aplastic anemia.
Aplastic anemia can be serious. It means your bone marrow doesn’t make enough red blood cells. One of the symptoms is easy bruising. Another symptom is that infections last way too long.
If you have aplastic anemia, there are medicines that might help you. But your main treatment option is a bone marrow transplant. Which is a frightening procedure.
Especially if you are a 9-year-old like Luxe.
A lot of people don’t know exactly what a bone marrow transplant involves. People, for example, like me.
So I called a Methodist University Hospital doctor in Memphis to explain the procedure. The doctor was glad to talk to me on his lunch break.
“Bone marrow is life,” he said. “Marrow comes in two colors. Red and yellow. It fills the cavities of your bones, and it has a big job. Red marrow makes your blood. So it’s pretty important stuff.”
Bone marrow is spongy, he tells me, like jelly. Just imagine spreading jam on toast. That’s the consistency. And chances are, if you need a marrow transplant, you need it yesterday.
“A marrow transplant is a huge undertaking. Especially for kids. There’s a conditioning period of about ten days.
“The immune system has to be totally suppressed so the body doesn’t reject new marrow cells. This usually involves intensive chemo and radiation.”
At minimum, you’re looking at nausea, vomiting, diarrhea, hair loss, organ damage, and a host of other serious side effects I won’t mention.
Things no child deserves to suffer.
“Some people recover in three months. Some people take twelve months or longer. Everyone’s different. But it’s a big deal, and it’s not easy.
“There’s a lot of fatigue because your body’s regrowing cells, and this requires major calories and energy. People have no idea how hard it is for a patient who’s in cell recovery after a transplant.”
Which brings us back to Luxe.
She just underwent her second bone marrow transplant.
That is correct. Her second. This is her second time going through hell. The second time her parents have had to watch their daughter lie in bed, connected to tubes, surrounded by more blinking lights than there are aboard the Starship Enterprise.
The conditioning process was havoc on Luxe’s tiny body. She had a blood infection. Complications. She was pumped full of antibiotics. Her circulatory system became a veritable chemistry cocktail.
But she is a tough kid. Bone tough.
Right now, Luxe is in an outpatient residence at Saint Jude Children’s Research Hospital. Recovering.
It’s not fair, of course. None of this is fair. Luxe’s friends are all in classrooms, running free at recess, laughing during school lunches, horsing around in P.E. class. Enjoying the all-American childhood.
Whereas Luxe is living at the Target House, an apartment reserved for families with children undergoing lengthy treatments.
As you read these words, I can’t help but wonder what Luxe might be doing.
Maybe she is staring out her apartment window, thinking. Maybe she is watching the Memphis cars and people go by.
Or maybe she is looking at the Tennessee sky, wondering why bad things happen to good kids.
Maybe she is crying because all she wants to be is normal. Maybe she feels exhausted. Maybe she is lonely.
I don’t know Luxe. But I wish I did. And I wish I could take this horrible experience from her. I wish I could wipe it from her memory. I wish I could wave a magic wand and remove her suffering. But I can’t.
What I can do is this.
I can send Luxe a postcard. I can tell her I am thinking of her. I can tell her that I am praying. And I can send this card to: Luxe Trivett, c/o Target House, 1811 Poplar Avenue, Apartment 511, Memphis, TN 38104.
And so can you. And who knows? Maybe if you and I send cards, others will, too. Maybe Luxe will receive an entire shipload of postcards.
Maybe she will get her wish and receive notes from every U.S. state. From each world country. From Alaska to Maine. From Norway to Zimbabwe. Notes from kids and adults alike.
From people who have all written letters from the heart. From people who just wanted to tell a 9-year-old girl that she is beautiful. That she is loved. That she is brave.
And above all, that her mother chose the right name.