Wednesday, January 14, 2009

Pay It Forward

I got a wonderful email the other day from the mother of a patient of mine, Kelly. She wrote to tell me not only how well her daughter is doing now, but that she is planning a benefit concert to raise money for some of the doctors at Hopkins who helped her daughter. In her words, “since I can never actually "repay" any of you, it is my deepest hope that I can somehow pay it forward.”

With her permission, I want to tell you Kelly’s story. My sincere hope is that someone with a child who is very sick will read this story, see the pictures, and feel some hope that their child, too, can come through it and do well.

Kelly came to Johns Hopkins when she was 11 for treatment of an unclear disorder of her immune system that had not responded to numerous therapies over the previous 2 years. The immunologist who saw her at Hopkins thought she might benefit from a novel treatment we have developed using high doses of a chemotherapy drug called cyclophosphamide (Cytoxan) to essentially “reboot” the immune system in patients who have severe autoimmune diseases (an autoimmune disease is a condition where the patient’s immune system attacks the patient’s own body as if it were an infection).

Twenty-one days after being admitted to the hospital for evaluation, Kelly was treated with high dose Cytoxan. This treatment initially made a very sick child even worse. She had blood infections. She needed transfusions. She couldn’t eat and needed a tube for feeding.

But then she got better.

It was slow at first, and when she was discharged from the hospital after 48 long days, Kelly was still being fed through a tube. But she was able to stop antibiotics, slowly decrease her pain medications, and eventually eat again. Two weeks after discharge from the hospital, Kelly was well enough to return home to California. She has continued to improve dramatically, and I’ve had the pleasure of watching her progress in photos her mother has sent me… first, wearing a bikini on the beach in Malibu, and most recently playing with the animals at the fair.

Kelly now eats a regular diet, her feeding tube is gone, she goes to school with her friends, and you could never tell by looking at her that she was ever so sick. Her story continues to inspire me. Children like Kelly, who endure so much, and emerge looking as if nothing had ever happened, are the reason I do what I do. And if her mother can “Pay it forward” and make this concert happen, I’ll be there dancing in the aisles with her.

Related Posts:
When Chemo Works
Ben's Tale
The Story of K


Anonymous said...

What a blessing! Thanks for sharing these, Dr. Loeb.

Cathy said...

What a beautiful young lady. She is the picture of health in those more recent pics. If a picture speaks a thousand words, hers certainly do.

Unknown said...

Thank you for sharing. That's an amazing story. My daughter also used Cytoxan for her immune system issues. We are now using Cyclosporin to see if that will work. Thank you again.

Anonymous said...

Good news is rare. Thanks for sharing.

Just me

ashwini said...

verry good article

Dr. Lisa said...

Thanks for the story. It is totally why those of us who care for really sick children do our jobs. We need to remind ourselves and everyone else every so often.