“There were some Christmases when we didn’t know if it would be the last holiday for Luke or Molly.”
You wouldn’t know it by looking at them today, but both children endured months of treatment and years of recovery – culminating in life-extending marrow transplants.
Luke was only 8-months-old when he was diagnosed. It was a day his parents, Julie and Brandon, will never forget. “Once you hear those words ‘your child has cancer,’ you learn to live a new normal,” said Julie.
At first, the family didn’t realize they couldn’t be Luke’s donors. In the frightening days that followed, they searched for his perfect match. “We had to count on complete strangers – and that’s when we learned about Be The Match®,” said Julie.
Fortunately, Luke found a match. His transplant went well, and once the little boy regained his strength, the family was anxious to welcome a new baby to the family. They had been told that Luke’s condition wasn’t genetic.
Little Molly came into the world seemingly healthy, but as she grew, the toddler’s body was often marred by multiple bruises. Julie insisted that doctors run extra blood tests, which confirmed her worst fears: Molly had MDS has well. This time, Julie and Brandon knew the challenges ahead.
Like her brother, Molly also found a donor through the Be The Match Registry®, but she had a more difficult recovery. She still remembers losing her long, blonde locks. At the tender age of 5, she has a remarkably matter-of-fact attitude about her struggle. As she recently told nearby shoppers in a Target checkout line, “I had cancer, but I didn’t die.”
These days, every childhood stepping stone and each family gathering holds a special meaning for the family. Last summer, Luke and Molly explored the wonders of Yellowstone during a family camping trip. Their parents feel a special joy each time Luke steps up to bat or Molly prances on stage.
Of all the family gatherings and celebrations, Christmas is by far their favorite. Recalls Julie, “There were some Christmases when we didn’t know if it would be the last holiday for Luke or Molly. It just means so much more now.”
The family is deeply grateful to Be The Match and its contributors. Julie put it simply: “Writing a check may not seem important to some people, but it means to the world to a family like ours. It meant that our children could live.”
You Can Help
As the holidays approach, cancer doesn’t take time off. There is no better way to show your support way than by making a gift to Be The Match. Learn more about how you can give a child the gift of life.
I was diagnosed with sickle cell disease when I was two weeks old. I’m 16 now, and even though I’ve been sick my whole life, I’m still a very hopeful person.
But the one thing I don’t hope for is a cure, because a possible cure already exists. It’s a bone marrow transplant. And I need one. For me, it could be a matter of life and death.
Unfortunately, I can’t find a marrow donor who matches my genetic profile. This isn’t right. But it’s not hard to fix. We just need more people of all races and ethnicities, including African Americans, to join the registry or to support the organization with a financial gift.
I’m doing all I can to spread the word. My mother and I have been organizing registration drives all over the San Francisco Bay Area. Even if I don’t find a match for me, I know I might be helping other people find the cure that could save their lives. Knowing that makes me proud to be of service to people like myself around the world.
I know how hard it is to wait, knowing there is a possible cure out there, but not being able to find it. Imagine if you or someone you loved was in the same position.
I have struggled throughout my life with my health because I’ve been in the hospital more than I’m home. I equally struggle to stay on track in school and do “normal” teenage things. Yet, my dreams outweigh my struggles because I’ve got big plans! I want to graduate from High School and go to Stanford University to become a Pediatric Hematologist-Oncologist. I want to see my little brother grow up, and I want to make my mom and dad proud. I’ve had these dreams for as long as I can remember and I plan on accomplishing them. I’ve always wanted to be a Pediatrician so that I can help children like me in the future and encourage them with my story.
But without a match, I might not be able to pursue my dreams. So I don’t need hope. I need action.
Members of Be The Match Registry join knowing that they may never be identified as a match for someone, or that they could be one of a number of potential matches. In some cases, members who join may be the only person on the registry who can save a particular patient’s life.
Three years after joining the registry, Aruni received news that she was a potential match. “I couldn’t believe that I was chosen as a possible match and that I was picked out of everyone on the registry,” said Aruni, “It was a really big surprise and I was really happy!” Thinking of her friend who passed away from leukemia, Aruni had no doubts about proceeding with additional testing. “I was a little nervous because I didn’t know if I was actually going to be the true match or not,” said Aruni.
Aruni was selected as the best match for her recipient and could not have been more thrilled. She immediately told her family and friends that she had matched, but their initial reactions to this exciting news were not as she expected. Aruni’s family was worried about her decision to donate because of the misleading information they received from others. They were hesitant about possible side effects Aruni would face, the time it would take away from her work, and her overall health. After hearing their concerns and knowing that she would need their support, Aruni was able to talk to her parents and make them feel more comfortable about her decision by educating them about the steps of donation.
Aruni donated peripheral blood stem cells (PSBC) to a 34-year-old woman fighting acute leukemia. After the donation, she was given an update about her recipient with the amazing news that the donation was successful. Recently, Aruni received an update that her recipient had returned to work and is doing well! Aruni is looking forward to finding out if she can be in contact with her recipient in the future. Until then, Aruni keeps her contact information up to date in hopes that she can be matched again and stays committed to Be The Match® by sharing her story with others.
Sharing your decision to donate marrow with family and friends is very important. If your loved ones have concerns or questions about the donation process please utilize the Donor Toolkit: Sharing your decision with family and friends. This toolkit is designed to help donors answer questions their spouse or partner, parents, children, and friends may have throughout their journey and create positive conversations about moving forward with donation. Be The Match wants you and your support network to be informed and comfortable with your decision to donate marrow.
All or a portion of the proceeds benefit Be The Match.
1. Be The Match retro, knee high socks. $9.95. www.ShopBeTheMatch.org
2. Be The Match white, ceramic cable knit mug. $8.99. www.ShopBeTheMatch.org
3. Flex Watches® exclusive Be The Match watch. $40.00. www.ShopBeTheMatch.org
4. Be The Match neoprene iPad sleeve. $7.99. www.ShopBeTheMatch.org
5. Be The Match journal set. $12.99. www.ShopBeTheMatch.org
6. Phiten® x Be The Match® Tornado™ necklace. $35.00. http://bit.ly/1ginsQ9
7. Be The Match ear flap beanie. $14.99. www.ShopBeTheMatch.org
8. gorjana & griffin® Lisi Harrison S.W.A.P. bracelet. $38.00. http://bit.ly/Ipb1a7
9. Sponsor a Be The Match swab kit. A gift of $100 to Be The Match adds a member to the marrow registry. More people on the Be The Match Registry means more patients can find their life-saving marrow match. http://bit.ly/1cO3w4W
Learn more about how Be The Match is saving the lives of people with leukemia and lymphoma at www.BeTheMatch.org
When little Mason is happy, the whole world knows it. The toddler’s open-mouthed smile radiates joy when he dances with big sister Jiena to the songs on the family’s karaoke machine.
But Mason isn’t always so joyful. As his mother Maly explains, “Mason is fearful of lots of things.” Mason and Jiena know what it’s like to have their smiles stifled behind a hospital facemask, and to be confined to the ICU for days on end.
Both siblings are battling battle Fanconi Anemia, or FA, a rare, life-threatening genetic disorder that can develop into head and neck cancer. The side effects of Mason’s radiation treatment made it difficult for him to chew or swallow, requiring a tracheostomy tube in his neck and a gastric tube in his stomach to deliver nutrition.
Mason was diagnosed with FA even before he was born, at 31 weeks’ gestational age. Soon thereafter, doctors diagnosed Jiena with the same rare disease. Both children are desperately in need of a marrow transplant.
But because the family are of Hmong descent, it’s been difficult for them to find matching marrow donors. Explains Maly, “In the traditional Hmong culture, it is taboo to donate organs or tissue. The thinking is that if you are born sick, it means you aren’t supposed to survive. Some even believe you should just let sick children die.”
Because of these beliefs, fewer Hmong volunteer to donate marrow – and that has made the search for matching marrow donors all the more difficult. But Maly is determined not to give up.
“When I learned there were no matches for Mason and Jiena, I became involved with Be The Match, and started holding donor registry drives in the Hmong community,” said Maly. She brings Mason and Jiena to the drives to help potential donors realize that little lives are at stake.
After a year, the family happily discovered several matches for Jiena, but they are still searching for Mason.
Other toddlers are happily chomping on Cheerios and trying out their first words, but Mason will need to keep his trachea tube and gastric tube while he waits for a matching donor. Swallowing limitations restrict his speech, so Maly taught him sign language. Still, his mother says he’s quite the joker, and loves making the whole family laugh.
Jiena will turn 7 soon, and was over-the-moon excited to be a flower girl in her aunt’s wedding. She loves drawing, painting and writing stories (when she isn’t playing Power Rangers with her two brothers). But the disorder has taken a toll on her growth: she is the size of a typical 2-year-old.
In spite of their troubles, the family looks to the future with hope. They are grateful to be in this country instead of war-torn Laos, and are excited to spend Christmas with their extended family.
And although she’s busy caring for her family, Maly will continue working to educate the Hmong community about the importance of becoming a marrow donor. “We need more donors – and more contributions – to keep growing the Be The Match Registry,” she says. “Because I believe that all kids, not just mine, deserve a future.”
You can help. Learn more about how you can give a child the gift of life.
Be The Match has teamed up with Phiten®, an international sports and wellness manufacturer and retailer to create a cause marketing licensing program. Phiten Help Be The Match Eliminate Blood Cancer will raise money to help ensure that every person who needs a bone marrow transplant receives one.
A limited edition Phiten x Be The Match Tornado Necklace ($35 USD) has been created and is exclusively available starting today, November 19, at www.PhitenUSA.com/BeTheMatch, with 25 percent of net sales supporting the Be The Match mission. The dual-coiled necklace features the Be The Match colors. It is designed with an outer nylon fabric permeated with Phiten’s AQUA-TITANIUM® technology. Purchase your Tornado Necklace today>
As part of the program, three Major League Baseball players, C.J. Wilson, Josh Hamilton and J.B. Shuck, of the Los Angeles Angels of Anaheim, filmed the public service announcement (PSA), “Step Up to the Plate. Be a Hero” at Anaheim Stadium. The goal of the PSA is to encourage people to join the Be The Match Registry as well as purchase the necklace to raise funds in support of our mission. Watch and share the PSA.
Help Be The Match save more lives by spreading the word and asking your friends and family to join the Be The Match Registry.
Phiten® is the unprecedented forerunner and pioneer of AQUA-METAL™ materials and the advancement of metal-infused technology. Founded in 1983 in Kyoto, Japan, Phiten has been inspiring individuals to live and strive for a balanced lifestyle with groundbreaking technology and design applied to active apparel, support products, footwear, and accessories. Holding over 100 patents worldwide and with over 30 distributors across the globe, Phiten has established itself as a symbol of sports, health, and wellness. Phiten is a licensed partner of NBA® and the NHL®, and the Authentic Licensed Partner of MLB®, holding the rights as the Official Compression Sleeve of Major League Baseball®. Phiten products are available at professional sports stadiums, sporting goods retailers, pharmacies, and chiropractic clinics across the nation. For more information please visit www.PhitenUSA.com.
About six years ago, Alyssa, a medical social worker, started working at a residential facility for seriously ill children without homes. There she encountered a sick little boy who now goes by the name of “Z.”
Not yet two years old, the toddler was languishing in the facility as he awaited a bone marrow transplant. Z suffered from Langerhans cell histiocytosis (LCH), a rare blood disorder that affects children. In his short life, he’d already lived through a lifetime of hardship – and was utterly alone in the world. His fragile immune system required him to be isolated from other children in the facility, but he could hear them playing.
During her shifts there self evident Alyssa spent as much time as she could with Z while providing care to 11 other ill children, including tiny premature babies. She recalls the days just before and during his transplant as the most difficult. “That’s when I really got to know him,” she says. “And when they asked me to sit with him in the hospital during his transplant process, I absolutely fell in love with him.”
The little boy’s recovery was slow and challenging, but Alyssa was a constant presence. One night in the hospital, he developed a very high fever. “I sat with him as he shivered and sweated, watching Elmo on TV, and I really believed he was going to die—but I prayed that he wouldn’t,” recalls Alyssa. Although she tried to hide her despair, one of her tears fell on Z in his hospital bed—and the little boy reached out to comfort her.
Little by little, Z grew stronger. As Alyssa witnessed his progress and spirit, her love for the little boy deepened. When Z turned 5, the family decided to adopt him. They welcomed him to his first real home with their whole hearts.
The new family of three celebrated their first Christmas together with the usual treats and traditions—and all of it was new to Z. “We discovered he’d never even heard of Santa,” says Alyssa. “My husband and I were like kids on Christmas morning—we were just so excited for him that we had to wake him up!”
Today, to the family’s relief, Z is a healthy, happy and sometimes sassy 8-year-old boy. “He went from such a dark place to being so funny, smart and well-adjusted,” says Alyssa. “And he’s proud to be the fastest player on his soccer team!” He’s also a proud big brother to the family’s newest addition: Jack, age 2.
At his 6th birthday party, Z received a special gift: a chance to meet his marrow donor. “She’s an EMT and just a wonderful person,” says Alyssa. “And Z understood what he gave her—he says, ‘She gave me the good blood.’”
With two healthy sons, every day is a little like Christmas to the family. Z loves making pumpkin bread for the holidays and learning about all their family traditions.
“We’re just so grateful to Z’s donor, and to Be The Match for finding her,” says Alyssa. “There are so many ways to give, but giving to an organization like Be The Match is concentrated good. It’s a chance to help so many children and families win the lottery of life – like we did. And now we have the child of our dreams.”
You have a power to give a child the gift of life. Learn more.
Below is Janet and Ron’s first letter to Michelle, the young woman who donated marrow to save Ava’s life. A donor and recipient must wait one year before they can exchange contact information, if the donor center allows and both parties consent. Prior to that time, anonymous messages may be sent through their donor center and all identifying information is removed.
Dear “Anonymous 20-year-old ANGEL in PA,”
How can we ever thank you for the sacrifice and gift you have given us? How do you thank someone for saving your child’s life? How do you thank someone for stepping up for a complete stranger? I have wanted to write this note for some time now, but adequate words fail me.
THANK YOU for registering with Be The Match. THANK YOU for answering “the call.” THANK YOU for facing the nerves and fear you must’ve felt. THANK YOU for enduring the pain and discomfort during and after the harvest, especially during the holidays. THANK YOU for being THE ONE for our sweet baby girl!
We are 4 months post transplant and “A” is doing remarkably well. While there have been a few bumps in the road, she and her (your) new immune system are getting along great. So far so good. Pre-transplant, “A” clearly didn’t feel well and it affected her sleeping, eating and disposition. Post-transplant, she is a whole different girl—happy, happy, happy! We have remarked to each other several times: “that donor must have a sunny disposition!”
“A” is our first and only cherished child, and it certainly has been a roller coaster year with her illness. But I am telling you, your magic bone marrow has changed the course of our lives forever. I hope it gives you enormous pride and comfort to know that you hold responsibility for that. Thank you for giving us back the future we have hoped and dreamed and planned for!
I hope one day we can meet, but for now, sweet angel, I hope you are happy and proud, and peaceful and loved.
With thanks and eternal gratitude,
“Anonymous parents of your 17-month-old marrow recipient”
You have a power to give a child the gift of life. Learn more.
Little Ava met Michelle in September 2013. Watch the heartwarming video.
Support from family and friends
Knowing little about the donation process, Darrell turned to his family and friends for support. They were thrilled to hear he was a potential match, but at the same time, were shocked that he and other marrow donors could be so giving to complete strangers.
After speaking with representatives from Be The Match and learning more about the two types of donation, bone marrow and peripheral blood stem cells (PBSC), Darrell’s supporters encouraged him to move forward with additional testing. Test results came back stating that Darrell was, indeed, a perfect match for his recipient, and he soon found out he would be donating to an elderly male with lymphoma.
The first donation – PBSC
Darrell’s first donation was in 2007, when he donated PBSC. Before his donation, Darrell had only seen medical procedures on TV, or had heard about them in his work as a pharmacist, so he was understandably a bit nervous. “It was intimidating to think that I was donating to someone and I had no idea who they were” said Darrell, “but I would hope that if I were ever in that situation that someone else would do that for me.”
For five days leading up to the PBSC donation, Darrell received injections of a drug called filgrastim. This is given prior to every PBSC donation in order to increase the number of blood-forming cells in the bloodstream. As a result of the filgrastim injections, he experienced moderate bone pain and headaches, but claims that it was nothing compared to what his recipient was going through.
After donation, Darrell explained that “it was less painful than I thought it would be” and his recovery went smoothly.
The second donation – Marrow
Five years after his first donation, Darrell was found to be a match again—this time, for a 16-year-old boy diagnosed with leukemia. For this donation, Darrell was asked to donate marrow, a surgical outpatient procedure where liquid marrow is extracted from the pelvic bone. Marrow donation was the first time Darrell had ever experienced anesthesia. “I was educated step-by-step what the procedure would be like and any questions or concerns I had were quickly answered” said Darrell. This allowed him to go into the donation with confidence. Once his donation was complete, Darrell experienced slight tenderness in his back for two days and was then able to return to his everyday routine.
Although Darrell has never met either of his recipients, he recently received an update that both are doing well. “It was a very surreal experience” said Darrell. “Although I could be walking down the street next to one of my recipients and not even know, I am glad I joined the registry. It was a very positive experience.”
Darrell’s Advice to Others
Looking back on both donation experiences, Darrell is overjoyed. He shares his story proudly and encourages others to learn more about joining Be The Match Registry. “The more people you can let know about this cause, the better” said Darrell. “If I knew it was going to be that easy, I would donate every week if I could!”
Note: If you already have health insurance, are happy with your plan and it has not been cancelled, you do not need to buy a plan on a health insurance exchange.
Here’s what you should consider when evaluating plan options:
- Premium levels, coverage, and cost: Each plan offered on the Health Insurance Exchanges will offer four levels of coverage–Bronze, Silver, Gold, and Platinum–ranging from lowest cost/least cost coverage, to highest cost/most cost coverage. Because most transplant patients have a high-cost medical condition, they should consider plans with higher levels of coverage, such as Gold or Platinum plans.
- Bone marrow transplant (BMT) benefit: Contact the health insurance company directly and ask about the plan’s specific BMT benefit. Get information about specifics including donor search coverage, prescription drug coverage, maximum benefit amounts, waiting periods for coverage, travel and lodging benefits, and clinical trial coverage.
- Assistance with premiums: Patients may be eligible to receive federal assistance to help cover premiums for plans on the Health Insurance Exchanges. Individuals are eligible if they make up to $45,960 annually. A family of four is eligible if they make up to $94,200 annually. Amounts vary depending on income. For information about your state’s Health Insurance Exchange, visit www.healthcare.gov. If your income is up to 133% of the Federal Poverty Level ($15,000 for an individual and $30,000 for a family of four) you may be eligible for Medicaid if your state chose to expand its Medicaid program. Visit www.kff.org to find out if your state chose to expand its Medicaid program.
- Cost-sharing features: When evaluating a plan, look for information on deductibles, out-of-pocket costs, co-payments, and co-insurance. All of these cost-sharing features will help you determine the total possible cost of different insurance plans. Think about the number of visits you will make to your primary care physician and any specialists, as well as potential hospital visits.
- Networks: Each health insurance plan has a designated set of in-network providers. Any providers outside of their network are considered out-of-network and will charge higher costs for care. Check the network of hospitals and providers to ensure that your physicians and transplant center are included.
Open enrollment for the Health Insurance Exchanges begins October 1, 2013 and runs through March 31, 2014. Coverage begins on January 1, 2014 as long as your first premium is paid by December 15, 2013.
Watch for more information about how these changes affect transplant patients and recipients. We will continue to provide updates on the ACA and Health Insurance Exchanges as information becomes available. If you have questions or need more information check the resources below. You can also contact Be The Match at 1 888 999 6743 or email email@example.com.
www.healthcare.gov (HHS’s Main Page for Health Insurance Information, including links to each state’s Health Insurance Exchange)
www.kff.org (Kaiser Family Foundation)
www.cancerinsurancechecklist.org (Cancer Insurance Checklist)