Tag Archives: Bone Marrow Transplant

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

Zeldathon Hope: How The $250,000 Raised For HelpHOPELive Will Change Lives

Gamers of the world, unite! Between December 27 and January 2, Zeldathon Hope raised $250,000 for HelpHOPELive, converting altruism and gaming prowess into tangible results. Gamers played The Legend of Zelda for 150 consecutive hours in front of a live audience via Twitch to bring this charitable marathon to its dazzling conclusion. Don’t miss our pictures and videos from the event!

This slideshow requires JavaScript.

Here, we highlight one piece of the impact of the funds raised through Zeldathon Hope: the donations we received from generous contributors in over 40 countries will help to provide one-time emergency assistance grants for families with an immediate financial need.


Your Donation Supports Emergency Grants That Change Lives


Your donation to HelpHOPELive during Zeldathon Hope will help provide meaningful and direct relief to families in the midst of a medical crisis through the HelpHOPELive Emergency Grant Program. Here are three stories that show just how important our emergency assistance grants can be for patients and families who are unable to fundraise to meet their uninsured needs.


Lucas

When he was 7 months old, baby Lucas received a liver transplant. Dealing with a financially and emotionally stressful time, both of Lucas’s parents were forced to take unpaid leave in order to care for him in the hospital during his transplant. Thanks to a HelpHOPELive Emergency Grant, Lucas’s parents were able to cover a month of rent so they did not get evicted while supporting Lucas during the lifesaving procedure.


Brandon

Brandon was paralyzed in a car accident as a teenager. Once he was able to return home, Brandon found that he could not enter his own bathroom because the doorway was too narrow for his wheelchair. He began to rely on the family’s laundry room for his daily hygiene needs. A HelpHOPELive Emergency Grant enabled his family to widen the doorway and lower the bathroom sink to help preserve independence and personal dignity.


Judy

In 2015, Judy received a lung transplant. When she was finally able to return home, Judy noticed that she was still having severe difficulty breathing. She found black mold in her house that had spread so extensively, it put her new lungs in jeopardy. An emergency grant from HelpHOPELive will allow Judy to get the mold removed so she can live a healthy life with her new lungs in her own home.


James

James needed radiation and two bone marrow transplants to fight cancer. While the treatment he received helped him to combat the disease, the radiation also severely deteriorated his teeth. With help from a HelpHOPELive Emergency Grant, James was able to get a set of dentures so the lifesaving treatment wouldn’t create a painful lifelong burden.


You Can Keep Supporting Hope!


While Zeldathon Hope had a tremendous impact, we still need your help to keep supporting families across the country! Find out how you can keep hope alive.

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!

This slideshow requires JavaScript.


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

Nick’s Fight Against Aplastic Anemia

Nick Karavite was diagnosed with a rare blood disease called aplastic anemia at age 13. His bone marrow stopped producing enough vital blood cell varieties which caused his immune system to attack itself. Nick’s treatment included extended hospital stays and testing, chemotherapy and, finally, a bone marrow transplant from his 6-year-old sister, Mandy, exactly one year ago today. We spoke to Nick and his mother, Pam, about his transplant journey.

Mandy Karavite chemotherapy Nick Karavite aplastic anemia

Nick encourages everyone to sign up as a bone marrow donor.


Walk us through the first few days.


Pam: To be honest, everything happened so fast that none of us had much time to process it. One day Nick was pitching a no-hitter, and the next day he had red spots all over him, a fever and exhaustion. I took him to the pediatrician and they did blood work and immediately sent us to the hospital. We were met by an entourage of doctors and nurses and escorted right to another room – no E.R., no waiting room. By the next morning, a bone marrow biopsy was performed and he was diagnosed with aplastic anemia.

We went from a routine visit to the pediatrician on Monday to hearing that our son could die on Wednesday. There just wasn’t any time to think, just react.


How much did you know about aplastic anemia when you were first diagnosed?


Nick: I didn’t know anything about aplastic anemia, and I had never heard of the disease before. In fact, nobody in my family had any experience with the disease. Even though I knew nothing at the beginning, I could probably tell you everything about the whole process at this point!

HelpHOPELive: Aplastic anemia is a rare disorder that causes an individual’s immune system to attack and destroy the body’s bone marrow. Fewer than 1,000 cases are diagnosed annually in the U.S. It is uncertain what causes aplastic anemia to occur.

hospital Nick Karavite aplastic anemia

Post-diagnosis, Nick spent extensive amounts of time in the hospital.


Was your family worried about you?


Nick: Yes, my family members were very worried. My mom would think about it every single night as she watched me sleep – she wanted to change places with me. But they didn’t let that worry get in the way. The same goes for my friends. Instead of overloading me with questions about it, they just cared for me.

Pam: We had our moments (I call them 80/20 days). Nick’s doctor told us that even with his sister, Mandy, as a bone marrow match, his chance of survival was 80%. I had days where I couldn’t shake the 20%. Once, I was packing a bag in Nick’s closet before heading back to the hospital and I had a vision of packing up his closet for good. I fell apart, began sobbing, sniffing his clothes, falling to my knees and begging God to leave my son here. I started calling them ‘closet moments’ – if I ever needed to cry, I would go find a closet so that Nick never knew.

Make A Wish Pamela Karavite Nick Karavite aplastic anemia

One year ago today, Nick gives his mother a Make A Wish medal.


Were you scared?


Nick: I wasn’t too scared, because I honestly didn’t know what was going to happen. I was learning more about the condition and focusing on what needed to happen next. I guess there is mild, moderate and severe aplastic anemia. I had severe aplastic anemia, but my parents never shared that or my survival odds with me until after I made it through.


What helped your family remain positive?


Pam: We were united in our common love for Nick, but I feel we remained positive because of God’s hand in things. I spent a lot of nights watching Nick sleep, wondering why this was happening. I still am not clear as to the “why,” but I am sure that God had a hand in preparing us for this battle for three reasons.

First, five years ago, God blessed us with the surprise of Mandy, who ended up being Nick’s ideal bone marrow match. Second, I had started work on my Masters in Special Education before Nick’s diagnosis, which equipped me perfectly to home school Nick for three quarters of his 8th grade year while he pursued treatment. Third, we moved our children to a different school district prior to his diagnosis, and the support of this new community became a true lifeline for our family when Nick was diagnosed.

hospital bed Nick Karavite aplastic anemia

The Karavite family sought to stay positive
throughout treatment.

The community really rallied to keep us lifted. Local parents put us in touch with HelpHOPELive, helped us cook meals and clean and held fundraisers in Nick’s honor. His peers at school even donated their allowance to his campaign. Teachers went above and beyond for Nick – his basketball coach gave him an honorary spot on the team even though he wouldn’t be able to play. Based on all we were armed with for this fight, it was hard not to remain positive.


Was fundraising an important part of the journey?


Pam: Fundraising was a HUGE part of our journey. The money raised through HelpHOPELive helped with anything insurance didn’t cover; the greatest help was when it allowed us to relocate for Nick’s hospital stay. One of the smartest things we did was to keep our family together: from the very beginning, I knew we needed to be at Nick’s side at the hospital 24/7. I knew we had Nick, the sick boy; Mandy, the donor; and two other boys that could potentially get lost in the shuffle. We agreed that keeping together was the best way to maintain some kind of ‘normal’.

Because of the help we received via donations from family and friends, one of us was able to be at Nick’s side every step of the way, and the other parent could be with our other children to provide them with ‘normal’ family time. Our psychologist has since told us that this one act, keeping our family together, was instrumental in getting us through this journey with the least amount of upheaval. Fundraising made that possible for us.

wheelchair friends family Nick Karavite aplastic anemia

Family and friends provided support and fundraising help.


What was the treatment like?


Nick: I went through a few treatments and then chemotherapy. I didn’t realize how sick it would make me. I got chemo for four days. Every night, all I could think about was being one day closer to going home again.

The bone marrow transplant only took a couple of hours, but I had to stay in the hospital for a month afterwards. A lot of people brought me games and things to do in the hospital to pass the time. I wasn’t able to eat for the first two weeks! The doctors wanted me to fill up on protein, but until I could get there, I had to get liquid nutrients through an IV for every single meal to stay healthy. I have a few scars from the treatment process.


What three words would you use to describe how it feels to go through diagnosis and treatment?


Nick: Scary. Unknowing. Shocked.

Nick Karavite aplastic anemia chemotherapy bone marrow transplant

Nick endured chemotherapy and a bone marrow transplant.


What advice would you give to another family that is facing a battle with aplastic anemia?


Pam: Well, there is always the obvious: stay off the Internet! I didn’t allow myself to look at how awful this disease can be until after I felt good about where Nick was in his treatment. But my central piece of advice is this: accept help. I can be terrible at doing this myself, but the help we received SAVED us. It is a very humbling experience but a very necessary piece to surviving such a trying ordeal. The emotional scars are certainly here to stay for all of us, but I can honestly say they would be far worse had we not accepted the help everyone so willingly offered.


What do you think everyone out there should know about aplastic anemia or becoming a bone marrow donor?


Nick: They should know that the treatment process is a lot harder than it sounds. Even though it’s not cancer, aplastic anemia can be harder to treat than leukemia.

The chances of living with aplastic anemia without a donor are 50%. It goes up to 80% with a donor. Not only that, but the bone marrow donation process is pretty much painless – all they do is put an IV in you and put you to sleep, then take your bone marrow. The donor’s cells replenish themselves in 4 to 6 weeks.

Mandy Karavite bone marrow donor donationNick Karavite aplastic anemia

Nick received bone marrow from his younger sister, Mandy.

My 6-year-old sister was my donor, and her least favorite part was the over-the-counter medicine she took after the procedure – she didn’t like the taste of it! She was able to keep going with her life right after the procedure. She was out swimming the next day!

Everyone should sign up to be a bone marrow donor. All you have to do is sign up, swab your cheeks and that’s it, and you can save a life.


You just graduated from eighth grade. What are you looking forward to in high school?


Nick: I’m excited about starting a few different classes like biology and math. Science and math are my best subjects. I’ll also have about 15 of my friends starting high school with me.

Pamela Karavite Nick Karavite aplastic anemia recovery graduation eighth grade

Nick graduated from eighth grade with his mom by his side.


What do you want to be when you grow up?


Nick: I love baseball and I would definitely like to play baseball professionally, but I know that might be a long shot. After going through this treatment, one of my career goals is to be an anesthesiologist. Whenever I had a surgery or treatment, I would ask about anesthesia and being an anesthesiologist. It’s a really interesting system. It puts you to sleep very fast! That was a memorable experience.


Baseball is one of your favorite pastimes. What is it that you love about the game?


Nick: I like hitting, pitching, fielding, playing on a team, all of it! I’ve been playing baseball since I was four and started off with tee-ball. My favorite professional teams are the Cubs and Tigers. I’ve been to a Tigers game before. My favorite pitcher is David Price, who pitches for the Tigers. He’s a leftie like me, and he’s a good pitcher.

Nick Karavite baseball bat hospital aplastic anemia

Nick loves to play baseball.


What’s your best pitch?


Nick: Every pitch is my best pitch!


Thank you for the great conversation, Nick and Pam. To learn more about Nick or donate to HelpHOPELive in his honor, visit his Campaign Page.

HOPE Award Recipient John Stephens

John Stevens and Clara Boyle

John Stevens and Clara Boyle

Each year at the annual benefit in support of HelpHOPELive, we honor three community heroes who prove why our mission matters with the Help, HOPE and Live awards.

This year, the recipient of the HOPE award will go to a very special football player by the name of John Stephens.

John was attending his freshmen recruiting weekend at SUNY Cortland when he was exposed to a program designed to save lives. It was a nationwide bone-marrow registry drive that Cortland participates in called “Get in the Game, Save a Life.” During the visit, John signed up and entered the registry. Little did he know that a year later he would receive the call that he was a match – for Clara Boyle, an infant battling leukemia 3,000 miles away.

It was John’s bone marrow, donated in January 2011, which allowed Clara to win her fight against acute myeloid leukemia, a rare cancer that attacks the blood cells.

The following August, Clara’s mom sent an email to John with the subject line “You saved her life.” It was the first time John was able to find out how Clara was doing, where she was from and what her name was. The two families arranged a meeting and in October 2012, the Boyle family traveled to Cortland State so that a healthy Clara could watch “her football player” in action.

HELP HOPE live it up!

The HOPE award will be presented by Andy Talley, Villanova Head Football Coach and the man responsible for the “Get in the Game, Save a Life” initiative at this year’s HelpHOPE—Live it up! benefit on September 17.

Watch the touching story of John and Clara here.