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Prayers and a Listener Are Priceless Support For Mesothelioma Victims
When someone you care for is diagnosed with mesothelioma, you might wonder what you can do to help. The first answer is, of course, PRAY and ask others to pray as well. Never, ever underestimate the power of prayer. Our family and our story is proof of that. You might feel as though there is nothing else you can do, but the truth is that you can.
The family that is going through a mesothelioma diagnosis and treatment is scared, tired, and exhausted in every capacity. Any help that you can offer is important. If you know that the person with the diagnosis usually does a certain task, ask if you could take that job over for a while. For example, Dad always spends a lot of time cutting grass, so family members took care of that for him. If you always see someone at the grocery store, ask if they will give you their list and pick up the items for them.
One thing that was extremely helpful was people helping to take care of my two grandmothers who my parents looked after. In this case, if you are a family member, or are close to the family, offer to help take on some, or more of, the responsibility in that regard.
Take a healthy meal over to the family. Trust me, they are too tired to cook and might forget to eat all together. Nutrition is so important for any cancer patient, and helping them eat, and eat right, is a great help.
Lastly, a shoulder to cry on and a listening ear are priceless. Spending time with the people impacted by a mesothelioma diagnosis is so meaningful and kind. Let them know that you are praying for them, that you support them, and that you are there for them whatever they may need at any time. The visits we received throughout our journey were so precious to us. Knowing that you are not going through it alone is a priceless thing.
Keep in mind that any kind of help you can give or offer is appreciated whether those involved are able to express it or not. Remember that they are going through a very difficult time. When offering your help, try hard not to overwhelm them, as they are already feeling devastated, so be sensitive to their situation. Friends and family members are an important factor in helping someone recovering from mesothelioma, so you are a cherished member of the team!
Thoracic Nurse to Provide Mesothelioma Information to Readers of MesotheliomaHelp
Lisa Hyde-Barrett has been a thoracic surgery nurse for nearly 25 years, and has had the privilege of caring for countless mesothelioma patients over the years. Lisa has worked alongside some of the leading authorities on treating mesothelioma at Brigham and Women’s Hospital through the International Mesothelioma Program (IMP).
Lisa is also a wellness advocate and she understands the relationship between awareness and cancer prevention and spends much of her time educating patients and their families about the importance of living a healthy lifestyle. She also knows that mesothelioma is one disease that can only be prevented through avoidance of asbestos, and once it develops it is challenging to treat.
Lisa feels very passionate about focusing her career on caring for mesothelioma patients and helping them deal with the disease. “I think that these people are the bravest people I have ever met,” says Lisa.
She adds that many of the patients that are treated at the IMP come such long distances, some coming from as far away as Europe and Asia, and they have no idea how their fortune is going to turn out. “These people have been given the worst of the worst news, yet still they find hope and courage,” said Lisa.
Lisa also works with Nursing Liaisons. Nursing Liaisons was founded on the premise that highly skilled and educated thoracic nurses recognize the need for a precise “aftercare” program. The nurses not only offer medical care to patients, but they also help to educate patients synchronizing their diagnosis with each unique, individual journey of mesothelioma. The nurses hope to educate patients transitioning to a more meaningful understanding of treatment and prognosis.
Lisa has been called upon to share her knowledge of mesothelioma at various conferences and educational seminars. In September, she co-presented a session at the 11th International Conference of the International Mesothelioma Interest Group entitled, “The Complex Discharge Needs of the Mesothelioma Patient.” She and her colleagues discussed the potential barriers mesothelioma patients and their families may encounter that could impede learning how to care for the patient and how nurses can offer support to help overcome those obstacles.
She is certified in Guided Care which was presented from Johns Hopkins Hospital. Also, Lisa recently has been certified in Reiki, a Japanese “laying on hands” technique for stress reduction and relaxation that promotes healing.
“I continue to meet people fighting this disease, and I am always asking how I can make a difference and help them through this journey,” says Lisa.
Please join us in welcoming Lisa to MesotheliomaHelp where she will offer articles focused on the needs of mesothelioma patients.
Funds from EU to Aid Rare Disease Consortium in Battling Mesothelioma
In 2011, the U.S. National Institutes of Health and the European Commission joined forces to form the International Rare Disease Research Consortium (IRDiRC) with a goal to develop 200 new rare disease treatments by 2020. To support this effort, the EU announced last week it is dedicating nearly 38 million Euro, or more than $51 million, in funding towards “the development of a central global rare disease hub involving 70 institutions that will allow scientists to share data from their genomics research projects.” Rare diseases, such as mesothelioma, globally affect nearly one person in 17.
According to a press release by Newcastle University which is coordinating the new rare disease hub, the collaborative efforts will lead to “faster diagnosis” and better treatments that will improve the quality of life for rare disease sufferers.
In the United States, an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. Mesothelioma, a cancer caused by asbestos exposure, is diagnosed in 3,000 Americans each year. There are nearly 7,000 rare diseases that affect one in ten Americans. Close to 30 million people across Europe are affected by a rare disease.
Many physicians and scientists believe that the answer to finding an effective treatment for mesothelioma and other rare diseases lies within each patient’s genetic makeup. Recent advances in genome sequencing have brought the cost down and have accelerated genetic discovery leading to targeted drug development and personalized care.
“Being able to sequence a person’s entire genetic code is an important advance, particularly for people living with the many rare genetic disorders, but it has also shown us that sequencing is only the first part of the story,” said Professor Hanns Lochmüller of Newcastle University and leader of the project. “It doesn’t replace clinical expertise – in fact, being able to combine genetic data with clinical data is more important than ever.”
The IRDiRC is launching several major projects combining international genetic data with clinical information and data on biomaterials “to help interpret the vast amounts of data the genome yields,” said Professor Paul Lasko of McGill University in Montréal, Canada, Chair-Elect of the IRDiRC Executive Committee. “This will aid scientists in the search for genetic causes of diseases and help identify new ways to create targeted therapies.”
According to Newcastle University, the projects include developing a global infrastructure to share the research of rare disease projects and supporting international rare disease collaboration through IRDiRC.
The IRDiRC Conference 2013 will be held in Dublin, Ireland on April 16-17, 2013. Sessions will focus on fostering international collaboration in rare diseases research. In addition, attendees will discuss which tools are needed and which are under development that can be used towards reaching IRDiRC objectives.
Family Shares Approach to Fundraising for Mesothelioma Research
Many people wonder what they can do to help with mesothelioma research. The answer is simple… DONATE or FUNDRAISE! The next question is often, “How?” That answer is also simple: Do what you can.
I have done several fundraisers over the past few months. Some have been more lucrative than others, but all are worthwhile. For instance, I am an independent consultant for a direct selling company. I have done two open houses and donated half of my commission to the charity of my choice, the Mesothelioma Applied Research Foundation. That was a simple fundraiser, as I set it up as I would any open house for a customer of mine. I invited family and friends and was able to send a nice donation both times.
Another fundraiser that we’ve done took a lot more time and planning. My hometown hosts a community festival every year. We spoke with the people in charge, and did a raffle table at the event where we raffle off gift baskets, gift certificates, Broadway show tickets, and even a tree stand. We started several months in advance, asking family members, friends and businesses if they would be interested in donating an item or items to our cause. People were very receptive and happy to help out, and we ended up with 31 different baskets!
We sold tickets all day at the festival and were overwhelmed with how generous people were. They purchased tons of tickets and even made extra donations to help with mesothelioma research. Everyone knew Dad’s story just from living in the town (Dad knows everyone) or by seeing the story in the newspaper or on TV on the local news. The hard work was definitely worth it.
We are currently starting to work on our next event and plan to continue our efforts. If you are interested in doing a fundraiser, I would be happy to talk with you. I am by no means an expert, but I’ve had a little experience this past year that I would be glad to share. The Meso Foundation is an amazing organization, and I am so happy to be affiliated with them and to be able to help them by fundraising and making donations. No donation is too small, as is no prayer!
Best of luck to you. Please know how grateful all those impacted by mesothelioma are for you and your efforts! God bless you!
Moving on with Life After a Year of Mesothelioma Treatment
Don Smitley and Jennifer Gelsick
Dad began his chemotherapy on March 19, 2012. His treatments were alimta and cisplatin; it was four treatments, 21 days apart, ending on May 21. During this time, he also had a port installed to make things a little easier. It was a scary time, not knowing the impact the chemo would have on Dad. Everyone is affected differently by the treatments.
Throughout the chemo, Dad continued to keep his positive attitude. He called me after the first one, saying, “One down, three to go!” Dad was very tired during this time, certain smells made him nauseous, and his stomach was uneasy more often than not. He just kept saying that no matter how bad it was, it could definitely have been worse.
Dad’s first scan was scheduled and we were all a nervous wreck. The oncologist treating Dad at home, came in and told them the good news, everything looked great! We celebrated the amazing news, the continuation of our miracle, and moved on to the next step we were hoping to take: a clinical trial.
We had been communicating with some people from the Mesothelioma Applied Research Foundation, an amazing group dedicated to finding a cure for mesothelioma, and had gotten some information about a clinical trial in NYC offered through Memorial Sloan-Kettering Cancer Center with Dr. Lee Krug. There were strict criteria to be a part of this trial, and we were praying that Dad was a candidate.
We left for New York again on June 24 for an appointment with Dr. Krug. We were happy to find that Dad was a great candidate for the trial and it would begin two weeks later. The trial was a series of six vaccines that required trips to the city every two weeks. We knew it would be a long, busy summer, but we were so excited to have another treatment option to help keep Dad cancer free.
Dad had his next scan in NYC and got more amazing results! As a part of the trial, we will travel back every three months for two years, and every six months for a period of time after. He has received excellent care at MSKCC as well as NYU Langone and we are so blessed to have these doctors.
The journey we have traveled has been long and arduous, but miraculous at the same time. I hope that Dad, a walking miracle, will inspire people to turn to God and never give up hope. There is help for mesothelioma patients and my Dad is a testimony to that and to the power of prayer.
Thank you for allowing me to share this story with you. I have learned so much this year; never take anything for granted and always keep strong in your faith. Please keep Dad in your prayers, and be assured of mine for you. May you and your families have a blessed, Merry Christmas and a beautiful, healthy New Year!
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