Why do I give? Because I feel grateful… and lucky

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
Show Content

Transplant recipient and financial contributor Michael Stewart opens up about his relatively smooth transplant journey, and how he hopes to pay it forward to those who endure a different experience.

Michael Stewart, a husband and father of three teenage boys, is grateful for so many things in his life – including his transplant journey. In 2004, Michael was feeling fatigued, and so he set up a doctor appointment. As someone who “works too much” and travels a lot for his job, feeling tired was normal, but this time something felt “off.” Michael’s intuition was right, and after receiving lower than normal blood count tests, his doctors diagnosed him with hairy cell leukemia.

Michael received treatment for his illness, and within 6-7 weeks of treatment, everything felt like it was “back to normal.” Michael continued to be monitored for a while, but after 3-4 years they told him he no longer needed to come in for routine checks. His leukemia had come and gone, and Michael was ready to move on with his life.

Fast forward a few years, to 2013, and Michael started feeling fatigued again. He thought to himself, “I’m getting older and travelling too much… that must be it.” But just to be safe, Michael went back to his doctor. This time, his blood counts had bottomed-out. It seemed as though his hairy cell leukemia had come back. Only a few days later, Michael was admitted to the ICU with sepsis issues, which occur when the body’s immune response to an infection triggers inflammatory responses throughout the body. The inflammation brought on by sepsis can trigger a series of changes that can damage multiple organ systems, causing them to fail. It is also most dangerous in older patients or those with weakened immune systems from treatment – like Michael.

This time Michael spent more than 45 days in the hospital (with a few short visits back home), but his blood counts just weren’t bouncing back like they had in 2004. The doctors performed a biopsy of his bone marrow, which didn’t indicate anything additional was wrong. Michael again followed his intuition, and after not feeling back to 100%, he decided to meet with a doctor who specialized in hairy cell leukemia to see if he could figure out what might be wrong.

Near the end of 2013, Michael found out from his new doctor that he hadn’t suffered a re-occurrence of his hairy cell leukemia – he had in fact developed myelodysplastic syndrome (MDS). MDS affects the bone marrow and blood, causing the blood-forming cells in the marrow to slow down, or even stop, making all three types of blood cells: red blood cells, white blood cells and platelets. It was discovered that his MDS had likely been brought on by the two rounds of leukemia treatment he had received in the past, and the damage to his bone marrow was so severe that his blood counts couldn’t recover on their own. Michael’s doctor started him on a temporary treatment regimen, but the reality was, Michael would need a marrow transplant to survive.

Time for transplant

Michael with his 3 sons, living in their temporary home in Seattle, preparing for his upcoming transplant

Michael with his 3 sons, living in their temporary home in Seattle, preparing for his upcoming transplant

All of Michael’s siblings were tested, but none was a full match. As Michael continued his temporary treatment plan, his doctor started a search of the Be The Match Registry®, and luckily there were multiple match options identified. Although Michael felt like everything was back to normal – and his temporary treatment was working – he was told that every day he continued that treatment, his risk for developing yet another disease increased. Michael met with doctors at the Seattle Cancer Care Alliance and decided to be proactive by pursuing the marrow transplant while he was relatively healthy – knowing he would eventually need it – rather than waiting until his health stated to deteriorate. As a result, he and his family moved from Colorado to Washington to begin the process.

Although Michael had multiple match options identified through the Be The Match Registry, a few of the potential donors backed out for various reasons. Finally, a 24-year-old female – a complete stranger to Michael – came through. She was a 10 out of 10 match, and agreed to go through with donation to help save the life of someone she’d never met. Michael’s initial transplant date was scheduled for right after Thanksgiving, but after a few setbacks, it finally landed on New Year’s Eve. Michael rang in the New Year in arguably the most amazing way – receiving the life-saving marrow he desperately needed – from a complete stranger.

Michael's hospital whiteboard on the day of his transplant, and his "re-birthday"

Michael’s hospital whiteboard on the day of his transplant, and his “re-birthday”

Michael stayed near the clinic for a few months after transplant – with regular visits to the lab and clinic every day. He was allowed to work (from home) and spend time with his family, but he had to avoid public places and his energy levels were very low. At day 12 he engrafted – meaning his body accepted the donated marrow. Around day 45, he was finally able to see his dog again. And at day 98, he got to go home … 22 days earlier than expected.

While Michael was receiving treatment, his family was always by his side. In total, they spent about 150 days living together in a new state, but they embraced the experience and to this day they even look back on it fondly. Michael’s children were able to attend school at “The Hutch” along with other children whose family members were there receiving treatment, providing a sense of community and support that helped them through that difficult time.

Michael’s recovery has been phenomenal. Today, still less than a year out from his transplant date, Michael and his family are back in their home state of Colorado, and Michael is back to working full time and traveling. While he notices a lower ability to “bounce back” after a long travel day, he otherwise feels like he’s pretty much back to normal.

Thank you is not enough

As Michael reflects on his transplant journey, he feels grateful of course, but he also feels lucky. According to Michael, he had it “easy” – too easy, and too stress-free compared to so many of those who endure a long and frightening process, sometimes without a happy ending.

“No stress, no desperate pleas for friends and family to be tested. No social media campaign. Because many people all over the world decided to take the simple step of being tested, I had a match. I have a chance, and a very good one at that, to see my three boys graduate from high school, get married, have their own kids. All because someone did something for someone they didn’t even know and may never meet.”

– Michael Stewart

The Stewart's dog, minutes after arriving back home in Colorado after Michael's transplant journey - happy for things to be "back to normal"

The Stewart’s dog, minutes after arriving back home in Colorado after Michael’s transplant journey – happy for things to be “back to normal”

That is why, when Michael decided to give a large financial contribution of $25,000 to Be The Match, he did so out of pure gratefulness. Gratefulness for his relatively smooth transplant journey and positive outcome, especially knowing he had it easier than so many.

Michael is grateful to Be The Match for providing him with access to multiple donor match options, and so grateful for his donor who never hesitated to save a stranger’s life. She donated through bone marrow extraction which took 4-6 hours. A 24-year-old who was asked to spend all day at the hospital right before New Year’s Eve said “Of course I will,” and Michael is forever grateful for that. “Thank you isn’t enough … you just can’t even put that into words”, he says.

Michael is also determined to turn his gratefulness into action. He is dedicated to furthering the mission of Be The Match through his financial contribution and awareness efforts, to help those who have a harder time finding a match – particularly those with ethnically diverse backgrounds.

Michael worked with Keith Stout, Director of Major and Planned Gifts at Be The Match, to ensure that his financial contribution could help in a number of ways – financially assisting patients and their families, adding more potential marrow donors to the registry, and helping advance research to improve transplant outcomes. Michael hopes that his contribution can help ensure that one day no one has to wonder if they will find a match, let alone survive the process.

“I am blessed and lucky that I’ve had the outcome that I’ve had. Be The Match gave me the opportunity to have lots of matches. I’m a lucky beneficiary of what had already been accomplished before I needed a transplant, and the people who were already on the registry. Now I want to help grow the registry even more, so that other people can be told they have lots and lots of matches too.”

– Michael Stewart

Interested in joining Michael in supporting Be The Match?

Join the registry – you could be the match that someone is searching for.
Give – big or small, financial gifts help continue our mission to help patients and their families.
For more information on major gift opportunities contact Keith Stout, Director of Major and Planned Gifts, at 763-406-8150 or sstout@NMDP.ORG

Tips for managing your medicines after transplant

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
Show Content

Taking your medicines as directed after transplant is important for your health, but it’s not easy to do.

Calley and Greg, both transplant recipients, knew that taking their medicines correctly and on time was very important. We talked with Calley and Greg to find out what worked for them.

Ila Saunders, PharmD, BCOP, sees many of the struggles people have managing medicines after transplant. We also talked to Ila to get advice from her on behalf of the Advocacy and Policy Working committee of the American Society for Blood and Marrow Transplantation (ASBMT) Pharmacy Special Interest Group.

Consider the following tips, and pick which ones work best for you.

Tip 1: Use a pill case that fits your needspills-2_260x150px

Depending on your health and treatment plan, decide whether a daily or weekly pillbox is best. Sometimes after transplant people have prescriptions that change frequently. This may be especially true in the first few months after transplant, or during treatment for complications such as graft-versus-host disease (GVHD). If your prescriptions are changing often, then a daily pillbox may be best. “You have to fill a daily pillbox every evening and you’ll be better organized when there are frequent changes to your medicines,” Ila says.

Calley had her transplant 2 years ago and now she uses a large weekly pillbox. She says this is the main way she keeps track of what medicines she needs to take. “The pillbox I have is larger than a normal one – it’s actually bigger than a standard size piece of paper. With that, I’m able to plan on filling it weekly on Sundays, and then I don’t have to worry about remembering which pills to take when during the week. This also helps to plan when medicines are going to run out. I call the pharmacist on Monday if I know that my prescription will be finished by the end of the week.”

Though it’s convenient, there are risks with a weekly pillbox. “I have seen one too many weekly pillboxes pop open. Then it’s hard to accurately identify each medicine and put it back in the correct location,” warns Ila.

Tip 2: Create a color-coded chart or system to keep track of doses and symptoms

Many people find it helpful to keep a list of all their medicines for reference. A medicine list can also be a useful way to chart and keep track of your pills. These lists may include the dose, the time and date a pill was taken, and any symptoms you have.

After Greg’s transplant in 2009, he left the hospital with nearly 30 pills to take each day. To help him manage all of the doses, he kept a binder full of spreadsheets that he would fill out and follow. “In the spreadsheet that we created, I would include spaces to check-off a medicine after I took it. I found it to be like a little success each day I could look forward to.”

Tip 3: Get help from others pills-1_260x150px

There’s a lot to keep track of after transplant. Having someone to help you organize your medicines can take pressure off of you while you’re recovering. Ask your caregiver or other loved ones for help organizing your medicines, and taking them according to your doctor’s instructions.

Your transplant team can also help. For example, your transplant pharmacist can help you learn about your prescriptions, organize your pillbox, and give you a list of all your medicines. “Use a team approach! Use a system that works well for you and your loved ones. This can take the burden off of you as you recover,” Ila says.

Tip 4: Ask questions

There’s a lot to learn about your medicines. When you’re talking with your doctor or pharmacist about a new medicine, many people ask what the medicine is for and how much they have to take. You may also want to ask how to store it, if you should take it with food or not, and what to do if you miss a dose.

“I think that one of the biggest pieces of advice I could give someone is to listen to your body. If something feels off, don’t ever sit on it – there more than likely is something the doctor or pharmacist can do to either help or ease your mind,” Greg suggests.

 

Need more tips for managing your medicines? Talk to your doctor or pharmacist. Or call the Be The Match® Patient Support Center, which provides support, information and resources for patients, caregivers and families before, during and after transplant.

CONTACT THE PATIENT SUPPORT CENTER:
CALL: 1 (888) 999-6743
Monday through Friday, 8 a.m. – 5 p.m. Central Time
EMAIL: patientinfo@nmdp.org
LEARN MORE: BeTheMatch.org/patient

TODAY Show celebrates donors for “sharing kindness”

Posted January 9th, 2017 by Be The Match and filed in News
Show Content
Anna, marrow transplant recipient, with her mom.

Anna, marrow transplant recipient, with her mom

NBC’s TODAY Show recently featured two courageous transplant patients: the young woman, Markel, who met her life-saving marrow donor, Shauna for the first time in New York, and 7-year-old Anna, who received her transplant last fall.

When they first learned that they needed marrow transplants, both Markel and Anna had family members tested to see if they could donate, but neither Markel’s twin brother nor Anna’s 4-year-old sister was a match. They would each need to find a stranger who would be a genetic match—and be willing and available to donate.

They turned to Be The Match for help, and from a registry of 13.5 million potential donors, Anna had just two ideal matches—but hopes were dashed when both of them turned out to be unavailable to donate.

Anna’s only hope was to choose the next best match, despite an increased risk of complications. Fortunately, an appropriately matched European donor was found and Anna received her life-saving transplant. Today she is doing well.

Markel and her donor, Shauna were able to meet and celebrate in person amidst hugs and tears of joy. “I can’t thank her enough for sharing her

Transplant patient Markel meeting her marrow donor Shauna

Transplant patient, Markel meeting her marrow donor, Shauna

kindness towards me and I urge everyone else to share their kindness, even the littlest amount that you have,” said Markel.

“It was honestly a very painless and easy process,” said Markel’s donor, Shauna. “It was just such an incredible thing to think, ‘wow, there’s someone out there who has my blood and cells in her, and that helped her beat this terrible disease.’”

Anna’s family also hopes to meet their donor, but they must remain anonymous to each other for at least a year. “I think about our donor a lot,” said Melissa, Anna’s mom. “So I hope to meet him one day, and tell him from the bottom of my heart how grateful I am to him for saving our daughter’s life.”

“It started with swabbing a cheek, and ended up being a long life for a beautiful little girl,” said Tim, Anna’s dad. “This year we’ve received random acts of kindness, deliberate acts of kindness, and anonymous acts of kindness. I think a good thing for our family, this year and beyond, is to share kindness.”

You too can share kindness and make a difference in patients’ lives.

See the full Today Show segment

A transplant delivers a cure … and a new path in life

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
Show Content

At 19 years old, Shane was making plans for his life, which included starting his second year of college. Then about a week before school started, Shane woke up feeling miserable. What seemed like a bad cold or the flu turned out to be something much more serious. Doctors found Shane’s blood counts were extremely low. He had aplastic anemia.

His doctor immediately admitted him to the hospital. After trying another treatment first, transplant was Shane’s best hope for a cure. He had his transplant just a few months later. His recovery hasn’t been easy, but his transplant journey led him down a new path that he now loves.

Here are Shane’s own words on how he found his new path:

Shane, transplant recipient

Shane, transplant recipient

“When I found out I had aplastic anemia it came as quite a surprise. I was a very active person, and I’d felt fine until I woke up one day with a fever and sore throat. Recovery from transplant has definitely had its ups and downs. Six months after my transplant, the steroids caused me to be about 60 pounds heavier than I’d ever been. I had some skin issues that fortunately did not turn out to be GVHD. I was going back to the hospital about once a week for checkups. It was hard to deal with.

“I was used to being social and active, and I was stuck in the house. I couldn’t be in the sunlight and I was uncomfortable in my own skin. We had to be careful with who came to see me because my immune system was still recovering, but it helped to have visits from friends.

“I didn’t always deal with the emotional aspects of recovery very well. Looking back, I should have taken better care of my mental health and reached out to a counselor or someone who could help me.

“Finally in September, I was able to start volunteering at my local community arts center again. It was a saving grace to have some responsibility outside the house. But at the same time, I was dealing with another disappointment. I couldn’t go back to college because of setbacks in my recovery. Thinking about going back was what had kept me going. I took it pretty hard, but the arts center scheduled me for more time and took me on as a volunteer intern, so that helped.

“I also started tutoring adults working on their GED. And I started volunteering at a local crisis center. Over time, the crisis center offered me a paid position. Now 3 years after transplant, I’m doing pretty well. My anxieties aren’t about my transplant anymore but like those of any 23-year-old asking, ‘What am I going to do with my life?’ I don’t feel alone anymore in feeling like, ‘What’s next?’ I love my job at the crisis center, and I’ve discovered that this is the type of work I want to keep doing in my life.

“My life took a different path than I expected, but it’s led to something good and I’m thankful for that.”

_____

While recovery is different for everyone, most people will have one or more setbacks.

Here are 2 strategies others have found helpful to cope with setbacks:

  • Meet with a counselor or therapist
  • Talk about your recovery with other transplant recipients ─ at your hospital or through Be The Match®

Have questions about recovery and want to talk with someone who’s been there? Our Peer Connect program can help.
We’ll put you in touch with one of our trained volunteers — who are transplant recipients and caregivers — to answer your questions and share their own transplant experiences. The program is available to both transplant recipients and caregivers and we will do our best to find someone that most closely matches your situation (based on age, disease, etc.) Talking with other transplant recipients and caregivers can help answer questions such as:

  • How long did it take to recover?
  • What is your life like after transplant?

Volunteers are available to talk by phone or email. Request a connection now.

Villanova Donors Honored at Under Armour All-America Football Game

Posted December 28th, 2016 by Be The Match and filed in News
Show Content

Sunday marks the tenth-annual Under Armour All-America Football Game that features more than 90 of the nation’s best high school football players. Three former Villanova football players – all of whom have donated bone marrow to a patient in need – are traveling to Orlando for the game and will attend player practices, skills drills and will have a chance to talk to the players. They will also be recognized during halftime to honor their life-saving donation.

C.J., Jacob, and Jake all joined Be The Match Registry® and within three months last year, they all donated to a patient in need.

It’s no coincidence that all three of these young men come from Villanova. The Wildcats’ head football coach, Andy Talley, is an avid supporter of Be The Match and co-created the organization’s “Get in the Game. Save a Life.” (GITG) initiative which encourages on-campus donor recruitment, largely supported by college athletes. More than 75 other college football programs have enlisted to participate in GITG which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need. Talley is retiring after this season, but his commitment to getting more committed young donors on the registry remains strong.

“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”

C.J., Jacob and Jake are excited to speak about their experience with the soon-to-be college athletes.

“When I joined I felt that I would be a match for someone,” says CJ. “I knew that there was a need to increase diversity of the registry and they were looking for Black or African American donors.” Overall, CJ is the sixth person who played for Talley to be a donor. And he’s the first African-American.

“The first time it really hit me about what was happening was when I asked a nurse what would have happened if I had decided not to donate,” says Jacob. “She told me that the patient wouldn’t have had a chance to survive and would have died.” Jacob was humbled. “The patient was literally going to receive a piece of me so that he could have a chance to live,” he says.

Jake says that the experience was life-changing. “It wasn’t hard and it is not painful!,” he says. “I encourage everyone to join the registry.”

The Under Armour All-America Football Game is the first of a series of sports-focused sponsorships Be The Match has planned in 2017, all in the hopes of getting committed young men to join the registry.

For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.

“My hero, my warrior, my sister.” One patient saved by two donors who stepped up to make a difference

Posted December 7th, 2016 by Be The Match and filed in News
Show Content
Briana (middle) with her family and marrow donors, Jose and Fernando (to the right and left of her).

Briana (middle) with her family and marrow donors, Jose and Fernando (to the right and left of her).

Briana had been crowned Homecoming Queen and was in the top five percent of her graduating class. She’d just been accepted to the University of Texas at Austin. But in March 2014, her dreams for the future were shattered when she was diagnosed with severe aplastic anemia. Her only hope for a cure was to find a matching marrow donor—a stranger who would come forward to save her life.

“Instead of preparing for college, I had to watch all of my friends begin without me,” she said. “It was a struggle to accept things weren’t going the way I planned.”

Briana’s doctors searched the Be The Match Registry for a donor, and in December, Briana and her family rejoiced when a matched donor was found. She received her transplant, and her faith in the future was restored. The family’s focus shifted to supporting Briana on her long road to recovery.

But their hopes were dashed again, when the donated cells did not engraft. The transplant had bought her time, but it had not been a success.

Briana had to find the strength inside herself to keep fighting. “My mind was just focused on getting through each day, not all the days to come,” she said. “I had come too far to just give up.”

Fortunately, another donor was found. And in March 2015, after going through another round of chemotherapy and radiation, Briana received her second transplant. Despite complications—including infections that required multiple surgeries—the second transplant was a success.

Today, Briana is a healthy 20-year-old with a unique perspective on life. “I went through something most people my age never have to experience, or even think about. I know now what kind of a woman I want to be. I’m going to change the world. There is nothing I cannot do.”

Briana’s transplant journey came full circle in November 2016 when she got to meet both of her donors, Jose and Fernando.

Her first donor, Jose, had been disappointed that his donation had not been a cure—but he was grateful to be part of the process that got Briana to her second transplant.

“The most memorable part of donating was the feeling that I was part of a life-saving experience,” Jose said. “I finally had a purpose in life to save someone else in this world.”

Briana’s second donor, Fernando, was equally moved by the experience. “The real heroes are the patients who overcome their illness, which affects them, that causes them anguish and pain. That is why Briana is my hero, my warrior and my sister.”

A Life-Saving Talley

Posted November 15th, 2016 by Be The Match and filed in Donor Stories, News, Patient Stories
Show Content

37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, former head football coach of the Villanova Wildcats. Talley retired from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer continues long after he walked off the field for the last time.

Answering the Call

In 1992, Talley was listening to the radio when he heard a fact that would change his life: Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. For tens of thousands of these patients a bone marrow or umbilical cord blood transplant could be their cure – yet only half receive the potentially life-saving transplant they need.

“When I heard the devastating odds of those in need of a transplant, I immediately knew that I had to do something,” Talley said. “With 90 young healthy football players on my team and the power of collegiate football behind me, I knew I could recruit donors and hopefully make an impact.”

Coach Talley at presenting Be The Match with a $125,000 check

Coach Talley presenting Be The Match with a $125,000 check

Recognizing that his young and healthy football players had the potential to become marrow donors, and use their clout on campus to recruit others to join, Talley set out to educate his players and the community about the opportunity to save the life of a stranger by joining the Be The Match Registry®.

A Team of Ideal Donors

Talley had an important audience on his team. 18-24 year old males are the ideal bone marrow donors. In general, the younger a person is, the healthier their marrow and because men tend to have more body mass than women, they have more marrow to give.

Additionally, since patients in need of a transplant are more likely to match someone who shares their ethnic ancestry, the diversity of his team played an important role, too. Currently, African American patients have the lowest odds of finding a match compared to all other populations and make up only 6 percent of the registry, a fact that stunned Talley.

Beyond recruiting his players to join the registry, Talley began hosting donor registry drives on the Villanova campus and raising funds to cover the costs of tissue typing. At every drive, Talley emphasized how easy it is to join the registry and potentially save a life—all it takes is a swab of cheek cells; no blood is drawn. In 2008, Be The Match® approached Talley with the idea of working together to expand his on-campus drive efforts and the “Get in the Game. Save a Life” (GITG) initiative was born.

Spreading the Word

Since then, more than 75 other college football programs have enlisted to participate in GITG, which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need.  One of these donors is Chicago Cub and former Villanova football and baseball star, Matt Szczur, whose donation story was recently featured by ESPN.

“Coach Talley gave me the opportunity to save someone’s life,” Szczur said. “What’s more motivating than that?”

In addition to his involvement with the GITG initiative, Talley also runs The Andy Talley Bone Marrow Foundation which has donated more than $375,000 to assist with covering the costs of adding new members to the registry.

The Commitment Continues

It’s important to Coach Talley that his mission of getting more committed donors on the registry doesn’t retire when he does. His successor, Assistant Coach Mike Ferrante, sits on The Board of Directors of The Andy Talley Bone Marrow Foundation, and he will continue to share the message that anyone can save a life. And Talley plans to deepen his involvement supporting this worthy cause after his final season with the Wildcats.

“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”

For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.

Your holiday gift guide

Posted November 14th, 2016 by Be The Match and filed in News
Show Content

Looking for a way to give back while you shop for gifts this holiday season? Be The Match has a few ways to help you do just that.

Shop Be The Match. Browse our online shop for the latest Be The Match branded gear.

One-of-a-kind Be The Match ornament available through our online shop

One-of-a-kind Be The Match ornament available through our online shop

From hats to bags to drinkware, a portion of the proceeds from any item you purchase helps patients in need by adding more marrow donors to the Be The Match Registry, helping patients with uninsured costs and supporting life-saving transplant research. In November, you’ll receive a one-of-a-kind Be The Match ornament when you spend $40 or more in the shop. Sign up to stay connected to the latest products and special promotions.

 

Volume 8 of our holiday CD helps raise funds for patients in need

Volume 8 of our holiday CD helps raise funds for patients in need

Holiday CD Sampler. Get in the holiday spirit with our 8th volume of “A Minnesota Holiday” CD. All of your favorite traditional holiday songs are featured by artists from the Midwest, with a bonus track from Javier Colon, season 1 winner of hit TV show The Voice. A portion of all proceeds will benefit Be The Match and our mission to help save lives through cellular therapy. Available now for digital download on iTunes and in MP3 format. All Minnesota Kowalski’s Markets have the CD available for purchase starting November 25th.

Give back while you shop with AmazonSmile

Give back by shopping with AmazonSmile

AmazonSmile. Support Be The Match by shopping with AmazonSmile. Simply click on the link below to buy the items you already have on your list, and for each eligible purchase, Amazon will make a donation to the Be The Match Foundation. Start using Amazon Smile today and show your support for patients in need.

 

Best friends both called to donate — “It felt like fate”

Posted November 11th, 2016 by Be The Match and filed in News
Show Content

registry-enews-110416Best friends Brad and Miranda joined Be The Match Registry at different times and for different reasons. Brad signed up online after a friend posted on Facebook about a friend with leukemia. “I hadn’t heard about Be The Match before joining,” said Brad, “but it seemed really easy.” Miranda was at a campus blood drive when she was asked if she’d also like to sign up as a marrow donor. “I said, ‘sure, why not.’ There was no reason to say no.”

 Neither of them could have guessed what a difference their decisions would make.

About two years later Miranda got the call asking if she’d donate to a man in his 70s–the same age as Miranda’s grandpa. And not long after, Brad got a similar call, asking if he would donate for a woman, also in her 70s.

“I took a couple days to really think about it,” said Miranda. “I was worried about falling behind in school, but I also felt like I was meant to take this opportunity. People can sit on the registry and never donate. And now I had a chance to cure someone, to give them more time with their family. It felt like fate.”

“I had really mixed feelings when I got the call,” said Brad. “I had a full-time internship, and worried about how it would all work out. I also thought about the pain of donating, but in the end it didn’t matter. When you donate you’re trying to stop death. Why wouldn’t you do it? It was stressful but also really exciting.”

Brad and Miranda both ended up donating peripheral blood stem cells (PBSC) within five days of each other, Miranda going first.

For four days leading up to her donation, Miranda received shots to increase the number of blood-forming cells in her body. “The shots were not very pleasant, but I reminded myself that the pain only lasted five seconds. And I took some pain reliever to stay on top of the side effects so I could make it through a full day of school. In the end, I never missed a class.”

On the day of her donation, Miranda settled in to binge watch “Arrow,” expecting the donation process to take the usual 6-8 hours. But just two-and-a-half hours later, she got a tap on her shoulder that she was done. The staff at the Apheresis center called her donation “spectacular.”

Brad’s donation also went quickly. “It was a strange sensation, but not negative. It was actually relaxing. The total time at the hospital was about 6 hours.”

“The donation was way easier than I expected it would be,” Miranda said. “I’d do it again in an instant if it meant I could save another life.” Brad agrees. “It was easy and everyone was very appreciative of what I was doing. Yeah, there was a little pain and it was a little stressful, but I would do it again. It was a great feeling.”

Brad and Miranda have both received updates that their recipients are out of the hospital and doing well.

Caregiving for a child

Posted November 8th, 2016 by Be The Match and filed in News
Show Content

Being a parent is a privilege. But it’s also challenging, especially when your child is ill. To honor and celebrate parent caregivers, we’re sharing 3 parents’ stories. You may find ideas for your own family. But remember, what works for you depends on a number of things, including your child’s age, your parenting style, and your family.

Meet the families 

Lizzie, transplant recipient

Lizzie, transplant recipient

Kathy’s daughter, Lizzie, was born with Diamond-Blackfan anemia, a rare disease where the body doesn’t make red blood cells. As Lizzie got older, her body started having problems. With the support and guidance of her family and health care team, Lizzie made the difficult decision at age 18 to get a transplant.

Lizette (left) and her daughter Amanda (right, transplant recipient)

Lizette (left) and her daughter Amanda, transplant recipient

Lizette’s daughter, Amanda, had sickle cell disease – an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and block blood flow. People with sickle cell disease have repeated episodes of excruciating pain and worsening permanent damage to vital organs. Just as Amanda turned 15 years old, she had a transplant.

 

Anne (right) and her son Caleb (left, transplant recipient)

Anne (right) and her son Caleb, transplant recipient

Ann’s son, Caleb, was 19 months old when he was diagnosed with a very serious autoimmune disorder called familial hemophagocytic lymphohistiocytosis. Caleb’s immune system didn’t fight infections like it was supposed to. Instead, it damaged Caleb’s own body. He had a transplant just before he turned 2.

 

Challenges with medicines

“For the most part, Amanda understood why she needed to take her medicines and was good about doing so, but there was 1 medicine that she didn’t want to take that helped control seizures she developed as a result of chemotherapy. Her doctor asked her to take it for at least a year, which she did. But when her doctor told her she needed to keep taking it after that year, Amanda resisted. We tried everything. What finally worked is when we explained the consequences of her not taking the medicine. She was old enough to get her driver’s permit, but we explained that it would be dangerous to her and to others if she drove and wasn’t taking her medicine. Once she could show us that she was committed to taking the medicine, we arranged for her to start driving classes.” – Lizette

“Caleb was so little he didn’t know why he had to take his medicines. He’d fight us and we would have to hold him down so we could squirt them in the back of his mouth. It was hard to do, but we got them in him. As he got older, we tried flavored meds, but he still hated them. Eventually, we found chocolate syrup cut the bitterness of the cyclosporine.” – Ann

 Coping with limitations

“We really limited the people who came to visit Amanda because we wanted to lower her chance of getting an infection as much as we could. She understood, but not having interaction with her friends was really hard on her. Amanda also missed being able to go shopping with her friends at the mall. So, I came up with a solution. The mall was too crowded, but Amanda also loved stationery — paper, pens and highlighters were all her thing. We took her to an office supply store since we knew there would be fewer people there. She walked in, wearing her mask of course, breathed in and said, ‘I love that smell of new stationery!’ It was a good way for us to get her out of the house in a safe way, and help her feel normal.” – Lizette

“When Caleb wasn’t healthy enough to go outside, he would sometimes cry at the window because he wanted to play in the yard with his sister, Hannah, who was 5 at the time. So, we made an indoor backyard in the basement. We included an outdoor scene with birds, rabbits and fish painted on the walls, and a fuzzy green blanket for grass.” – Ann

Taking time for yourself

“We live in Arizona and Lizzie’s transplant team was in Minnesota, so that was a challenge. We were fortunate to plan for her older brother and sister, family and friends to make the trip and spend time with Lizzie. This gave my husband and me time to step away and recharge. Throughout those early months after transplant, being able to spend time with her friends was a BIG deal. And her friends were amazing. We scheduled times for them to come and be with her so she was never alone. After a while, her friends knew what to do and how to help her. So by noon most days my job was done. Her friends took over and I managed the big stuff.” – Kathy

“Looking back, I wish I would have accepted more help. At the time, I was so focused on what I had to do, I wasn’t good at letting other people get involved. And frankly, I was terrified at the thought of leaving Caleb with anyone overnight. But it’s so important to take time to yourself, to take care of yourself or go out on a date night. It helped so much to get away for a few hours.” – Ann

Accepting help from others

No one can manage all the responsibilities of being a parent and a caregiver alone. Think about your needs and ask yourself:

  • Who has offered to support me and my child?
  • What tasks do I have and who can I ask for help?
  • When can I schedule 15 minutes for myself?
  • What activities help me relax and recharge?

Support and resources for parent caregivers: