A Part of the University of Maryland Medical Center

Connect with UMGCC
Facebook Twitter YouTube Blog iPhone
Email PageEmail page Print PagePrint page

Information for Patients

Personal Web Page Provides Window to the Outside World During Leukemia Patient's Extended Hospital Stay

From left: wife Alice, son Aaron, Harold, and daughter-in-law Martha

Note: Harold Adler passed away on June 5, 2007, after a long struggle with leukemia. His family has graciously consented to continue to share his story to encourage and inspire others.

Harold Adler's admission to the University of Maryland Marlene and Stewart Greenebaum Cancer Center for acute myeloid leukemia (AML) back in November set off a chain reaction of care and concern among his large network of family and friends. Everyone wanted the latest news: how he was doing, what was the progress in his treatment, when would he be able to come home?

While grateful for the support and interest in her husband's condition, his wife Alice found keeping everyone up-to-date on her husband's condition was a time-consuming and challenging task. Then a fellow UMGCC patient mentioned a free service offered through the medical center for creating a personal Web page to communicate with his friends and relatives. CaringBridge is an easy-to-use Internet service developed to help patients and their families stay connected with loved ones during medical treatment.

Since creating his own CaringBridge Web site in December, the 77-year-old Adler has posted an online journal of his battle with leukemia, added photos of himself with his medical team and his family members, and received hundreds of messages of support from well-wishers as far away as Israel and Australia. During periods in his treatment when Adler has not felt up to typing his own journal entries, his son Aaron has filled in, posting reports on the latest developments in his dad's condition.

Harold Adler's CaringBridge Web page

"I think this is one of the most unique and useful services out there," Adler says from the hospital room that has been his "home" on and off for the past three months. "It's given me a reason to get up the next day, to see who has gone on the site and left me a message. It's given me a lot of company in a place where company is very restricted, so it's been my window to the outside world."

A recent journal entry, entitled "Roller Coaster: The Ride's Not Over Yet," reports on his latest treatment regimen, a clinical trial that will hopefully send him into the remission that has been so illusive over the past few months:

"After all your spirited cheerleading, my white cells have overshot the mark into more dangerous outerlimits. With Captain Kirk at the console, we have decided to try a third pass: a clinical trial of Vorinistat, supposed to open the tightly-entwined leukemia cells and expose them to a stronger dose of ARA-C and Etoposide, already FDA approved for leukemia therapy... I assure you, I will give it my all. Love you, Harold."

A patient or a family member can create or add to a personalized Web page from their hospital room using a laptop computer or at one of the workstations available in the medical center's Patient Resource Center. It only takes a few moments to create a patient Web page through CaringBridge. Each personalized site is private and only those who have been given the site address may visit.

According to Anne Williams, coordinator of patient resources at the University of Maryland Medical Center, the service is having a very positive impact for patients who are using it. "It really helps ease the burden of communicating to multiple people all over the country. Ordinarily, our families have to spend a lot of time on the phone, and this service frees them up to be at their loved one's bedside," said Williams.

Harold Adler's son Aaron perhaps summed it up best in an entry he posted on "The Harold Report:"

"I know that Dad appreciates every note that is posted to this site -- as does the entire family. If they measured web sites by the feeling of caring that comes through, this one would be at the top."

CaringBridge is offered through the University of Maryland Medical Center and the Marlene and Stewart Greenebaum Cancer Center through a generous gift from Susan and Mark Kolman. For more information on creating personalized patient Web pages, please contact Anne Williams in the Patient Resource Center, 410-328-0910, or visit CaringBridge.org.

Related Resources:

This page was last updated on: September 10, 2009.