A unique way to gather important new information about thalassemia while meeting other patients and parents who can relate to the specific challenges associated with thalassemia.

For more information, visit: http://tinyurl.com/4doxrhb

Cedars Sinai Hospital Harvey Morse Auditorium
Tuesday, May 24th 2011 between 7-9pm
Free of charge. Refreshments will be served. All welcome.
Seating Limited – RSVP requested.

Flyer

A Children’s Session is available under the supervision of a Child Life Specialist from 9:00 am – 12:00 pm and from 2:00 pm – 6:00 pm

Whether you are meeting a new thalassemia patient for the first time or picking up where you left off with one from last year, there is an instant deep connection that ties us to each other. Some may see it as an affliction, but I am beginning to see it as a special mark that inspires us to strive to be extraordinary rather than to settle for mediocrity.

In the tapestry of life, we have the honor of being woven with the same uncommon thread. We are unique and yet the same; our struggles and fears may be individual but are also so similar. You could say that it is in our genes.

This year’s thalassemia retreat was up in the beautiful wine country but there was no whine found among the patients. We spent our weekend together in the Russian River area, where Laurice Levine had arranged for us to stay at a beautiful and secluded estate. Our schedule consisted of settling in, exploring, cooking, cleaning, playing games, and catching up with one another as much as possible. On Saturday, we had our psychosocial session, moderated by Laurice. If I had to pick a title for it, I think I would call it “No Taboos.”

Imagine sitting in a group of 18 to 20 people, some of whom you have known for years and others whom you have just met for the first or second time. You can ask one question that every individual has to answer personally. The atmosphere is honest and truthful. What would your question be?

“I never expected to live past 30.” “They told my parents I would die in my teens.” “I just want to live into my 50s to see my child grow up.” “I’m living on borrowed time; I try to make the most of every moment.” “We need to live life to the fullest.” “It’s about quality, not quantity, of time.” These were just some of the comments that surfaced in answer to thought-provoking questions posed by various patients during the session. The questions included: “If you knew it was your last meal, what would you eat?” “For what would you want to be most remembered?” and “Where would you go if it was the last trip you would ever take?” Although death is not a popular subject in our society, it is a real part of a thalassemia patient’s life. I once heard someone say, “Thalassemia years are like dog years.” This is not to say that thalassemia patients live like dogs but that our lifespan is different, and each must decide to face it or try to flee from it.

We spent several hours posing questions and pondering answers, but interestingly, the theme remained constant. Although no one’s question included the words “death” or “dying,” somehow all the answers centered around that topic. To an outsider, the session might have seemed weird or depressing, but for us, it was very meaningful and needed. Only other thalassemia patients understand the struggle of getting up each day. No one else can imagine the fears or frustrations of having thalassemia. No one can empathize with the loss of a friend who had thalassemia like another patient who has lived your greatest struggles, experienced your deepest fears, and felt your biggest dreams.

For me, having thalassemia means that I have to make every moment count. It means that no time or person should be taken for granted and that I should try to live with no regrets. I believe that there are only a few things that will truly matter on my deathbed: those whom I love, those who love me, and where I’m going to spend eternity.

Paul was diagnosed with thalassemia major when he was four months old. At that time, he looked pale, but otherwise appeared to be healthy. Blood tests would prove otherwise.

My husband and I were unaware that we were carriers of this genetic disease; that there was a one in four chance in every pregnancy that a child would be born with thalassemia major. It was even more shocking to us because Paul has an older brother who doesn’t even carry the thalassemia trait.

We had no idea what this was or how our lives were about to change. We went to see a specialist on blood disorders. I brought a tape recorder so I could record the visit, afraid I would miss something important. I still have that tape, twenty-five years later.

The specialist told us that Paul’s red blood cells were abnormal in shape and size and that he could not reproduce his own blood cells. Because Paul could not reproduce his blood cells, he would need blood transfusions to keep his hemoglobin at a normal level. All this seemed unreal, but at the same time, we wanted his home life to be as normal as possible.

The blood transfusions started when Paul was twelve months old. They have continued every three to four weeks for the last twenty four years and will continue for the rest of his life.

A nurse once told me “you do what you have to do”. And we did. There were the constant blood tests. Watching the nurses trying to find a vein in my small child always broke my heart. There were all the late nights at the hospital, waiting for the type and cross, waiting for the blood, waiting for the blood to finish transfusing so we could go home. Always waiting.

And with the transfusions came a high iron count. When Paul was two, I had to learn to insert a needle in Paul’s stomach every night so the drug Desferal could excrete the excess iron out of his system through his urine. Just imagine a two year old running around to get away from the treatment and the full family effort it took every night to make sure that he was getting his medication. We can laugh now but it wasn’t so funny then.

In patients who have thalassemia the excess iron, from transfusions, binds itself to vital organs if it is not removed through treatments such as Desferal. Over time this excess iron can shorten his life span by causing complications to his organs.

His ferritin level, a measure of the iron in Paul’s body, remains fairly low, but liver biopsies are showing that his liver is becoming overloaded with iron, so he is on a more aggressive Desferal treatment.

Years ago a child rarely lived to adulthood. Now they are living productive lives well into their 40′s.

At twenty-five years old, Paul is doing quite well. He is married and he and his wife, Melissa, are pursuing their doctorate degrees. Paul now has an implanted portcath that allows him to receive his blood transfusions and Desferal treatment thru the port, instead of through his overused veins. He has taken over the responsibility of scheduling his transfusions and making appointments with home health care nurses for the Desferal treatments. Paul has developed a wonderful relationship with all his doctors and nurses at the hospital.

The hospital trips, doctor appointments, and calls to nurses are a daily reminder that he has to continually monitor his condition. Even a slight fever can mean a trip to the doctor’s office to check for infection. We are very fortunate that over the years Paul has taken an active role in his treatment. He is not afraid to question the doctors or make suggestions.

It has not been easy having a child with thalassemia, there are constant worries about his health and worries about his future. Yet over time we have learned to deal with these issues as they come. We have become part of organizations such as the Thalassemia Support Foundation because it’s not just Paul who needs to know and be supported by other thalassemia patients; we parents need that support as well. We have done our best to provide Paul with a “normal” life in spite of the circumstances. As part of a close knit Italian family, Paul will always have our love and support.

Thalassemia doesn’t just impact the patient; it impacts everyone that knows them.

There were vendors situated around the lake with all kinds of food, music, jumpers for the kids, even paddle boats and dragon races. Even the Starbucks vendor was handing out free samplings of one of their cold frappaccino drinks. The day was hot but the area was packed with people, young and old. We walked passed the community services and headed towards our booth for the health fair portion of the festival. We settled in and started handing out educational pamphlets, answering questions about Thalassemia, and free pencils to the kids.

This was a great opportunity for us to reach out to the public since many of these people had not heard of Thalassemia and its genetic complications. We ended the day with plans to come back next year.

Left to Right: Thomas Cheng (Cooley’s Anemia – California Chapter), Carmen DiLorenzo (Fundraising Chair), Vincie DiLorenzo (Volunteer), Paul DiLorenzo (President)