A donor-recipient meeting helps raise awareness among D.C. lawmakers

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Patient Stories, Volunteer Stories
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On March 20, in Washington, D.C., a first-time meeting between a marrow transplant recipient and her donor brought about tears of joy and forged a life-long connection between two women. But the meeting also raised awareness about how Congressional support is vital to help future patients get the marrow or cord blood transplants they need.

Be The Match arranged the first-time meeting between transplant recipient Kate Jauch and her donor, Kyndess Eaggleston, who was identified as the best match for Kate from among the more than 19 million volunteer donors listed on the Be The Match Registry.

The day after their emotional meeting, both women shared their experiences with Members of Congress at several legislative briefings arranged by Be The Match. Kyndess and Kate each spoke about the importance of advocacy, program funding, and access to transplant for Americans with blood cancer and other blood disorders.

“I was fortunate to have found a match, and we must continue to grow the registry for those who will need a transplant in the future,” said Kate. “This is why we are urging policymakers to protect access to transplant through increased program funding.”

At the briefings, both women spoke to Members of Congress and their legislative aides about how increased funding is needed to optimize access to marrow transplantation and to improve outcomes, particularly for Americans who might have difficulty finding a match or for patients where a transplant is their only chance for a cure.

“It was very moving to meet Kate in person and know that this is someone I will forever be bonded to through the Be The Match Registry,” said Kyndess. “I encourage anybody eligible to sign up to be a donor. They make the process easy and knowing you could potentially save a life is incredible.”

How you can advocate to help patients who need transplants

The first-time meeting between Kyndess and Kate raised awareness among the many Member of Congress who attended the briefings that for Medicare beneficiaries, funding for bone marrow transplants fall short of the actual costs of care.

Advocates such as Kyndess and Kate are urging Congress to act swiftly to pass HR 4215, legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment, including cell acquisition, transplant and recovery for older Americans diagnosed with blood cancers or other disorders.

As described on the Be The Match legislative advocacy webpage, HR 4215 will reform reimbursement to hospitals for the cell acquisition costs using a methodology similar to that used for solid organs. This policy would have a very small impact on Medicare’s total spending, but would ensure patient access to life-saving care.

Learn more about how you can advocate on this and other issues affecting access to live-saving transplants.

“Thank You Will Never Be Enough”

Posted November 10th, 2015 by Be The Match and filed in News
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Dalton(R) family_Sandy-Jared_100Sandy and her husband Jared try not to take anything for granted. They believe that even the most trivial things, like walking outside or going to the store, are moments to be grateful.  “You value life so much more when you have watched someone fight for theirs,” said Sandy. Since their son, Dalton was eight weeks old, Sandy and Jared have watched him battle for his life and, ultimately, win.

When Dalton was only two months old, he started to experience frequent bacterial and skin infections. After months of appointments, which produced few answers, doctors finally learned that Dalton’s symptoms were a result of a much larger issue: a genetic immune system disorder called severe combined immunodeficiency (SCID). The diagnosis was very scary; Sandy and Jared were told that if untreated, babies with SCID usually die within a year.

Dalton(R) with Dennis(D)_348Dalton’s best hope was a marrow transplant. Unfortunately no one in Dalton’s family was a suitable match. Dalton’s doctors then turned to the Be The Match Registry to find an unrelated marrow donor.

Thankfully, Dalton was lucky. Multiple matches were identified and shortly after, Dalton’s doctors requested additional testing to determine which donor would be his best chance for survival.

Before his transplant, Dalton underwent eight days of high dose chemotherapy to prepare his body to accept the new donor cells. While Sandy and Jared knew that a marrow transplant was Dalton’s best hope, watching their child suffer was emotionally taxing. For Sandy, the 100 days post-transplant were “the scariest and most stressful of my life,” she said.

After a long recovery, Dalton was finally able to return home. “You look at him now,” said Sandy, “and you would never know what he has been through. He has gained weight and has his hair back. He is making up for lost time!”

Dalton(R)-44Without a transplant, Dalton might not be alive. This September at the Be The Match Annual Gala, the family got the opportunity they had been waiting for – the chance to thank the stranger that saved their baby’s life. For the first time, Dalton, Sandy and Jared met Dalton’s marrow donor, Dennis, a fire chief from Boise, Idaho and got the chance to thank and hug Dennis for the gift he gave Dalton.

This Thanksgiving, Dalton’s family is thankful for Dennis and all Be The Match supporters.  “Thank you will never be enough,” said Sandy, “but it is all we have. It comes from the bottom of my heart.”

This Thanksgiving, you can help give a child the gift of life by supporting the life-saving work of Be The Match. Your gifts help more patients get the marrow donation they need.

*If the donor center allows and both parties consent, a donor and recipient or a recipient’s guardian must still wait one year before they can exchange contact information and meet in person.

Finding Tamino’s Cure – Two Dads Unite to Help

Posted October 8th, 2014 by Be The Match and filed in News
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Two young fathers, Joe (far left) and Justin (far right), used their first-time marrow donor-recipient meeting on Good Morning America to draw attention to another young father's search for a marrow donor. They're helping spread the word about Tamino (center) whom they met at the inaugural NYC Be The Match Walk+Run.

Two young fathers, Joe (far left) and Justin (far right), used their first-time marrow donor-recipient meeting on Good Morning America to draw attention to another young father’s search for a marrow donor. They’re helping spread the word about Tamino (center) whom they met at the inaugural NYC Be The Match Walk+Run.

In September, ABC’s Good Morning America broadcast a special first-time meeting of a Staten Island, NY man who beat lymphoma and the Dallas marrow donor who helped him do it. Unbeknownst to them, they led parallel lives: both 35, married and each a father with young children.

The title: “Dad” means everything to both of these men. So, it was no surprise that as excited as they were to meet, they turned their good news into an effort to help another young father searching for a marrow donor.

The dads are spreading the word about Tamino, a father from NYC suffering from Severe Aplastic Anemia. They’re asking others to join the Be The Match Registry® online in hopes of finding Tamino a life-saving marrow donor so he can watch his one-year-old son, Matteo, grow up. Currently there is no match for Tamino on the Be The Match Registry. He is of Brazilian, French, Italian, Bolivian and Colombian ancestry.

“No child should grow up without a father, not if we can help it,” said Justin Jenkins the Dallas dad who donated marrow so Staten Island father Joe Yannantuono could watch his 4-year-old grow up.

“Let’s find Tamino a marrow donor. Help teach his young son, Matteo that the world may be big, but it’s full of people willing to stop what they’re doing for a moment to help a little boy in Queens who needs his daddy.” Join the registry online at join.bethematch.org/tamino.

Share this message and help spread the word. If you’re not a match for Tamino, you may match one of the thousands of other patients battling blood diseases and searching for their cure.

Keeping your relationship strong when your spouse is your caregiver

Posted February 5th, 2013 by Be The Match and filed in Patient Stories
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Wendy and Clark have a lot to celebrate these days – 25 years of marriage and Wendy’s upcoming 4th “new” birthday.
 
Clark was Wendy’s  primary caregiver as she battled ALL and MDS, and during her double cord transplant in the summer of 2009. As husband and wife, they are now back to enjoying hiking, spending time with friends and going to church.

Whether you are a patient or a caregiver, you know that going through the journey of a life-saving transplant affects your relationship with the other person, for better or worse.

Wendy and Clark say they are best friends and love spending time together. How did they manage the patient/caregiver dynamic as a married couple? How did they make it through years of chemotherapy  and a transplant to arrive at a relationship that is stronger than ever?
 
The patient: Wendy’s perspective
The hardest part about balancing the roles of patient and spouse was realizing how much my role as a wife changed.  Before transplant, I felt equal to my husband in every way and now I did not. I felt weak, less than. My husband absolutely did not make me feel that way – it was all me. However, when you can’t do the same things you used to do and need to be taken care of, it affects how you feel about yourself and the most important relationships in your life, like being a spouse.

I think the patient/caregiver dynamic will always be part of our lives to some extent, but it lessens more and more as time goes on. Clark will always be more protective over me and my health because of my diagnosis and transplant, but I’ve been able to manage all aspects of my health care by myself for three years now and it is no longer a daily issue. Clark would tell me over and over again my only job was to recover and get better.  In that sense, he made it very easy for me. He wasn’t expecting me to play the same role I had before I was diagnosed. However, there are times when, as a patient, you don’t want to be in that role – you want some sense of normalcy. You just want to be a husband or wife. That is why communication is very important.  You need to let your spouse know, in a loving way, of course, that you don’t want to feel like a patient all the time. At some point you want to start taking on the spouse role to feel normal and productive, and as a distraction from being a patient.

The biggest issue for me is understanding how to deal with my emotions. It is better than what it was early on, but he still has to help me out in that area on occasion (as well as seeing a counselor, occasionally). It’s important that we both feel like we can communicate freely. We each talk about our fears, frustrations, disappointments, anxieties, grieving. Each person can then appreciate what the other is going through. Many times, we are both feeling the same way. Then we can help each other and not feel so alone. In the process we became closer.

Another part of communication that few people are willing to talk about is sex. Things change after diagnosis and transplant. Talk to your doctor or a certified sex therapist (we found one who was excellent) if there are any issues in that area for either partner. That can strengthen a marriage greatly and enhance communication, self-worth and happiness.

There are a few strategies or ideas that have helped us keep our relationship strong. For example, we make time to do things that don’t revolve around anything medical; take a walk, watch a movie, play a game or go out with friends.  As equally important for us is prayer and worship time together. Slowly introduce tasks that the patient can do to contribute to the daily running of the household (paying bills, fixing dinner, doing laundry) so that the patient feels productive and needed. Consider asking friends and family to help with daily chores (grocery shopping, cleaning, medical appointments) so that there is more time for relationship time. Talk to each other frankly about needs and expectations.  Get outside help if you need it – from a counselor or pastor. 

I believe a relationship can’t help but change after an experience like this. For us, thankfully, it deepened and strengthened our relationship. We know what each is made of now. But it does change the dynamic. We view life differently now. We have experienced life changing drastically from one moment to the next – never to be the same. That changes a person and a relationship. We make and think of plans differently; there is always a caveat. But it also makes us appreciate each other and every moment we have together and every special occasion, even more. We try not to take anything for granted and be very grateful.

The most special part was seeing my husband take on roles that he really hadn’t before, and that just deepened my love for him. For a while, he had to do everything, and he did it all without complaining. He demonstrated his love and commitment to me by doing all the mundane (and extraordinary) things on a daily basis. He was living out the vows he had professed to me 20 years earlier – in sickness and health, good times and bad.

 “The line between caregiver and spouse would blur frequently. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day.”  
-Clark, caregiver

The caregiver: Clark’s perspective
The line between caregiver and spouse would blur frequently.  I would go from being a caregiver to being a spouse back to a caregiver in the same hour. It all depended on what needed to be done.  I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day. It is hard to distinguish why you are doing or saying a particular thing.  Am I making dinner and doing the dishes as a spouse or a caregiver?

It was a little different for me because Wendy was diagnosed with ALL and two years before her transplant she went through HCVAD (a type of chemotherapy regimen) for eight months.  The chemo was eight rounds, which required hospitalizations for 5-10 days.  The caregiving role after the transplant was not that different from the caregiving role during HCVAD.  Of course, I had no idea what was ahead of me as a caregiver. I was totally unprepared. 

For me the hardest part of our dynamic was knowing when to be a caregiver and when to be a spouse.  There were times when my wife needed one over the other. Today, I would say my role as a caregiver decreases every day. From 2007-2009 I was an active caregiver, but now it is more passive. But I think it will always be part of our relationship.  When you are a caregiver for someone you have committed your life to it is hard to erase that thought pattern.  Although as time goes on it becomes less and less of a thought pattern.

Communication is an excellent way to maintain a healthy relationship.  Making time for each other is also very important.  We walk every day together and talk about what is going on in each other’s life.  Even though we now have a new normal we still have a normal life, we do the things we did before the transplant.

If I could say anything to other couples in this situation, I would tell them that I know it is hard but do not let the disease or transplant define who you are or who you are married to. This is just another bump in the road of life. I know it is a big bump but you can make it. There is a light at the end of the tunnel and it is not a train.  Life will get back to a new normal and the roles of caregiver and patient will fade with time.

This experience has caused us to deepen our relationship and love for each other and there is a sense of satisfaction knowing that we went through hell together and ended up closer than before.

Who is your caregiver? And in what ways did your relationship change? Share your story