Castleman disease: “Our son shows great courage as he fights against the disease!”
Published 10 Nov 2021 • By Maëva Gourdon
Dalton was diagnosed with unicentric Castleman disease (UCD) at 8 years old. His mother, Amber, shares his story, and tell us how he and his family have found support and answers to their questions, thanks to a patient community.
Read Dalton's story below!
Your son Dalton has Castleman disease, can you tell us more about his diagnosis? What type of Castleman disease does he have?
Dalton was diagnosed with Hyaline Vascular unicentric Castleman disease in April 2018, when he was 8 years old. Since then, he has had his ups and downs, facing different symptoms and manifestations of the disease.
How did you react to his diagnosis?
As I mentioned, Dalton was only 8 years old when he was diagnosed with this condition, so it was a very scary time for us. We were torn between fear, anger and grief. We were completely overwhelmed and lost.
The doctor who initially diagnosed Dalton was also not very familiar with Castleman disease. How can you not worry if the doctor himself is incapable of answering your questions?
Where did you turn to with your questions?
Once the diagnosis was made, I started doing my own research on the internet so that I could have a better understanding of Castleman disease and what it would mean to my son. This led me to the CDCN website.
It was a relief to learn that we were not alone and that there were people out there fighting every day to find a cure.
In what way did joining the CDCN help you?
Thanks to the CDCN, we were constantly in contact with Dalton's oncologist and other specialists. We felt genuine support through this continuity of care; we've found a true support system.
The CDCN allows us to continue learning more about this condition. They've helped us to feel like we're contributing to the fight towards a cure by helping the CDCN learn as much as they can about Castleman disease and by sharing our experience with others.
How has Dalton's condition affected his daily life?
Dalton has dealt with many ups and downs in terms of symptomatic manifestations, so he's had to try different forms of treatment, such as rituxan and targeted radiotherapy.
Unfortunately, Castleman disease has had a negative impact on his health. It's brought on sever fatigue and repeated episodes of diminished health. He's had to miss school and other normal childhood activities.
How is Dalton handling Castleman disease in the day-to-day?
Over the past few years, Dalton has undergone several biposies, CT and PET scans, PICC line insertion, and endless blood tests. He's also been on several chemotherapy and immunosuppressive treatments.
Today he's currently being treated with CHOP chemotherapy (cyclophosphamide, doxorubicin, vincristine, prednisolone) and continues his fight with the disease with immense courage and a smile on his face!
Is there a message you would like to share with other Carenity members living with Castleman disease?
There is something Max Lucado once said, that helps keep our family going during the hardest days of Dalton's journey:
"You'll get through this. It won't be painless. It won't be quick. But God will use this mess for good. Don't be foolish or naïve. But don't despair either. With God's help you'll get through this".
Many thanks to Amber for sharing her story with us on Carenity!
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Testimonial adapted from the CDCN