Tag Archives: cancer

Touched by Transplant: This Mom’s Birthday Became Her Re-Birth Day

Teacher. Mother. Survivor. This is the story of Help Hope Live patient Kellie Murphy, one of four winners of our 2017 Touched by Transplant New Life Contest.

Touched by Transplant 2017 Help Hope Live

Kellie Murphy’s world was turned upside down when she received a diagnosis of multiple myeloma, a blood cancer caused by malignant plasma cells in bone marrow. The mother of two learned that to survive, she would need a bone marrow transplant as soon as possible.

Kellie also learned that the transplant would come with a host of out-of-pocket medical expenses, including co-pays and deductibles, temporary relocation and travel, caregiving costs, and a lifetime of immunosuppressant medications. She began fundraising with Help Hope Live as part of the Mid-Atlantic Bone Marrow Transplant Fund in February 2016.

In May 2016, Kellie found out that the bone marrow transplant she needed would be moving forward. “Believe it or not,” she wrote on her Help Hope Live campaign page, “cancer has made me realize how blessed I truly am.”

Last month, she sent us this incredible update:

“On May 31, 2016, I was admitted to the University of Maryland Medical Center to receive a bone marrow transplant in the hopes of going into remission from multiple myeloma. That day was also my birthday and my daughter’s birthday.

My time in the hospital was difficult, but the staff made it much easier. I will always remember their kindness. I had so many people to fight for, especially my son and daughter.

Now, almost one year later, I am engaged to be married, and my cancer is in complete remission. This year on May 31, I will turn 50 and my daughter will turn 21. We plan on really celebrating our joint birthdays and my new birthday since I have this chance at new life.

I am here because of others’ kindness, generosity, and many prayers. Thanks to Help Hope Live, we were able to make that difficult time a little easier on the people who were caring for me, and I will be forever grateful.

As of May 2017, Kellie is within $500 of her Help Hope Live fundraising goal. She fundraises for the Help Hope Live Mid-Atlantic Bone Marrow Transplant Fund.

Kellie Murphy Help Hope Live

Kellie, right, with her daughter, Amber

Touched by Transplant 2017 Help Hope LiveThank you for your story, Kellie! If you have been moved by this story, make a donation to Help Hope Live in honor of Kellie today at: https://helphopelive.org/campaign/10362

How To Save A Life In 30 Seconds

Blood cancers like leukemia kill more children in America than any other disease. As part of the largest network of bone marrow donor centers in the United States, Delete Blood Cancer has registered more than 600,000 donors and provided over 2,000 bone marrow transplants to patients in need. We spoke to Desirée Chavis, the organization’s communications specialist, about making an impact through bone marrow donation.

What is Delete Blood Cancer’s mission?

We seek to register as many eligible and committed bone marrow donors in the U.S. as possible. We are also an international organization with a presence in 5 countries. Part of our mission is also to bust the myths surrounding donation and try to empower others to be advocates for donation themselves. We want people to know that it takes just 30 seconds to swab your cheeks and register as a potential donor. You could change or even save someone’s life!

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What would you say if someone asked, why should I become a bone marrow donor?

  1. It’s an amazing and unique experience.
  2. Your bone marrow will replenish itself.
  3. Receiving bone marrow can be lifesaving for patients. Without a donor, many face extreme medical, financial and emotional hurdles–you are giving them a precious gift.
  4. Minorities and mixed race recipients can have a harder time finding a donor, so your contribution can really make a difference in their lives.
Nick Karavite HelpHOPELive

HelpHOPELive client Nick Karavite received a lifesaving bone marrow transplant.

What are some of the most common misconceptions about becoming a bone marrow donor?

The biggest misconception is around the methods of donation and the pain involved in donating. Whether you donate through the peripheral blood stem cell method (PBSC) or the surgical method, you’re back in action very quickly. They are both same-day outpatient procedures.

PBSC is used for 75% of donations. With this method, you receive a daily injection of filgrastim 4 days pre-donation to increase the number of blood stem cells in your body, so you may feel like you have the flu for a few days. During the several hour donation, a machine takes blood from one arm, removes the blood stem cells and returns the blood to the other arm. You can use your iPad, read magazines or watch TV while you donate.

A Delete Blood Cancer donates via PBSC

A PBSC donation in progress.

Surgical donation is used in the other 25% of cases. In these cases, surgeons go in with a special syringe (to extract bone marrow) while you are under anesthesia. On average, it takes a little over an hour and you don’t feel anything during the procedure. You can still leave on the same day, making sure that you limit strenuous activity. Most donors describe feeling slightly tender or bruised at the injection site.

Has your work allowed you to hear stories from patients whose lives have been changed by donation?

Our main mission is to save lives; we encounter many rewarding moments while working toward that! Something amazing about our work is that a donor in any country we serve can fill the need for a patient outside of those borders. Up to one year (or two in some places) after transplant, a donor and recipient cannot have direct contact, but after that, if the desire is mutual, they can begin direct contact with each other and even plan to meet.

I remember one incredible story about a recipient in Texas, Larry, and his donor in Germany, Johann. A year after Larry’s transplant, Johann came to visit him in Texas! Larry brought up an amazing point: he and Johann now share DNA. They were basically “brothers” because of Johann’s decision to donate. Larry was so excited to meet him, and Johann was welcomed into a new family. He gained that family by saving a life.

wilson donor

Larry and Johann were linked by Johann’s lifesaving donation. Source: Houston Chronicle

Go to deletebloodcancer.org to register to be a donor now. Share your donation or bone marrow transplant stories with us on Facebook and on Twitter

4 Ways To Engage Your Faith Community For Fundraising

In honor of National Donor Sabbath this week, here are a few ideas for how to engage your faith community in fundraising.

Spread Awareness With National Donor Sabbath

Between November 13 and November 15, faith communities across the country will celebrate National Donor Sabbath, a time to honor individuals who have saved lives through organ donation. It’s an opportunity for discussion and education: as Donate Life California notes, “ALL major religions support organ, eye and tissue donation, and believe it to be a final act of kindness and generosity.”

National Donor Sabbath 2015

Source: donatelife.net

HelpHOPELive will be distributing free organ donor awareness materials to congregants at St. David’s Episcopal Church in our local Wayne, PA community this year. Consider asking your faith community to honor the occasion in 2016. Contact your HelpHOPELive Fundraising Coordinator to request awareness materials to help spread the word.

Showcase Ways To Make A Difference

Your place of worship may be an ideal location to bring people together to sign up to be bone marrow donors, blood donors or registered organ donors. These drives can raise awareness for a cause, inspire attendees to donate to your HelpHOPELive Campaign and create an opportunity to enlist community volunteers who may help you to promote your Campaign or plan future fundraising events.

bone marrow drive swab

Hold a bone marrow drive to raise awareness and support for your Campaign.

In 2010, HelpHOPELive client Vinodkumar Challagundla desperately needed a bone marrow transplant to fight myelofibrosis. His faith community came together to hold bone marrow drives across the country at which potential donors could submit their cheek swabs for compatibility testing. The community found overwhelming support for the initiatives: more than 15,000 people joined the National Marrow Donor Program registry through the drives, including the donor that would save his life.

Hold A Fundraiser

A place of worship can be a great venue for a fundraising event, from a post-service pancake breakfast to a community yard sale. If you are already involved with a faith community, contact your HelpHOPELive Fundraising Coordinator for event ideas that will suit the venue and audience.

pancake breakfast

Your place of worship could be a great location for a fundraising event.

If your faith community has a suitable concert area or holds a regular musical event, consider engaging faith leaders to help you plan a concert to fundraise for your Campaign. A faith-based community concert in honor of HelpHOPELive client Allen West Edgar attracted over 300 attendees and raised significant proceeds towards Allen’s kidney transplant. Allen even performed at the concert, showing attendees how much their support meant to him.

Engage A Volunteer Network

Some faith communities have a social service and outreach component built into their mission or their youth organizations. See if your place of worship would be willing to help you reach out to individuals who want to support your fundraising efforts in the name of their faith. HelpHOPELive client Ethan Kadish’s friends and family members engaged their faith community to support Ethan through two projects, a 5K event and a performance by a local youth band, that tied into service expectations for a coming-of-age religious ceremony.


Find enthusiastic volunteers through your faith community.

Want more fundraising tips and ideas? Reach out to your HelpHOPELive Fundraising Coordinator for support and browse our Blog for additional insights.

Ask A Professional: How To Cope With Chronic Pain

Dr. Stephen F. Grinstead is a chronic pain management expert and author of multiple chronic pain management books including “Freedom from Suffering: A Journey of Hope.” We spoke to Dr. Grinstead about separating physical pain from psychological pain to improve your quality of life.

[Pain management is a complex and sometimes controversial topic. A chronic pain patient explains her own perspective at the end of this article.]

HelpHOPELive chronic pain

Chronic pain can affect you both physically and psychologically.

The Physical Side of Pain

Reports from the Institute of Medicine state that at least 100 million Americans are affected by some degree of chronic pain.

The term ‘chronic pain’ typically includes any pain lasting for 12 weeks or more. While ‘acute pain’ acts as an alert to draw attention to an injury, chronic pain is a persistent condition that can last for months, years or even decades. Chronic pain may cause sleep disturbances, a stifled appetite, changes in mood and limitations to a sufferer’s movement and flexibility.

chronic pain physical symptoms HelpHOPELive

Acute pain alerts you to a problem. Chronic pain is persistent.

According to Dr. Stephen F. Grinstead, because chronic pain may stem from various areas within the nervous system, chronic pain can impact multiple parts of the body at once. Chronic pain is a side effect associated with a variety of conditions including fibromyalgia, multiple sclerosis, Crohn’s disease and some cancers.

The Psychology of Pain

“Pain doesn’t just hurt,” said Dr. Grinstead, “it changes the most basic neurophysiologic processes in the human body.” Your mental state may create the difference between a mild pain response and what Dr. Grinstead defines as suffering.

“Pain is a physical sensation…suffering results from the meaning or interpretation your brain assigns to the pain signal,” explained Dr. Grinstead. When you view your pain as awful, interminable, constant and beyond help, you are experiencing the psychological side of chronic pain.

HelpHOPELive chronic pain mental

There are psychological effects associated with chronic pain.

Dr. Grinstead identified several methods for combatting your mental and emotional responses to chronic pain.

Step one: recognize that your thoughts generate an emotional response.

When your thinking is distorted, you’ll quickly feel uncomfortable emotions like fear and anxiety. These negative emotional responses can lead to self-defeating thoughts, like:

  • My pain is never going to stop.
  • My pain is horrible, awful, terrible.
  • My pain is killing me.
  • My pain is torturing, grueling or punishing.
  • My pain is distressing, excruciating or agonizing.
HelpHOPELive chronic pain crossroads

Are your chronic pain reactions extreme and one-directional?

Step two: recognize that uncomfortable emotions such as fear, shame, anger or depression can intensity your chronic pain response.

Anticipation, fear and negativity can alter your body’s response to pain. Sometimes just thinking about a certain activity that might exacerbate your pain will “activate the physical pain system,” said Dr. Grinstead. “This way of thinking contributes to the development of emotional reactions that amplifies the pain response. These reactions can make you believe you are trapped in a progressive cycle of disability.”

chronic pain HelpHOPELive fear

Your emotional response to chronic pain could cause you to feel trapped or afraid.

Step three: reach out, connect and engage.

It is very common for individuals with chronic pain to stop participating in activities that have the potential to improve their mood. In such cases, said Dr. Grinstead, it is important to engage in ‘seeking situations’ that can provide distraction from pain and improve your frame of mind and quality of life.

isolate isolation chronic pain HelpHOPELive lonely

You may isolate and stop seeking out pleasurable activities because of chronic pain.

Seeking situations may include social, recreational, spiritual or educational pursuits. Once you can clearly identify problematic thinking and uncomfortable emotions, you can learn how to challenge this thinking, manage your emotions and engage in healthier behaviors.

chronic pain recovery fun HelpHOPELive

It’s healthy to rediscover your favorite activities — and enjoy them again!

You have a right to overcome your suffering.

“People suffering with chronic pain have a right to be free from that suffering,” Dr. Grinstead said. “They also have a responsibility to themselves and their loved ones to seek out appropriate treatment options and take authentic action to implement those options so they can move beyond just surviving to thriving.”

recovery chronic pain first step journey HelpHOPELive relief

You deserve relief from your suffering. Are you ready to take the first step?

Chronic pain patient Marianne noted that awareness is key. “Certainly, it can be easier to tolerate pain with better control of our thoughts,” she said. “I encourage everyone to learn how to be more accepting of that as part of their ‘new normal.’ CBT [cognitive behavioral therapy] is a great tool.”

“So many people, though, think that there is a magic cure to chronic pain, be it a pain medication or surgery or another avenue,” Marianne cautioned. “Lack of interest in daily activities or similar symptoms do not necessarily stem from a lack of effort on the part of a chronic pain sufferer. CBT is a helpful tool, but it’s not a cure. I do all I can to learn to live WITH my pain. I know it will never not be a part of my life.”

How is your chronic pain this week? Are any tools helping you to manage your body and mind more effectively? Check in with us on Facebook or on Twitter. You can learn more about Dr. Grinstead’s chronic pain management approach by visiting his website.