Adapting to a new family dynamic: When a parent has a transplant

Posted July 6th, 2017 by Be The Match and filed in Patient Stories
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When Mary Clare had her transplant, her only daughter, Twila, was just 4 years old.

Suddenly, the family’s focus of attention and care shifted away from Twila and toward Mary Clare, which resulted in a wide range of changes that touched all 3 members of her family, and their relationships with one another.

My transplant and recovery changed my daughter’s world,” says Mary Clare, “Before diagnosis, Twila was the center of our small family and our days revolved around her school and activities.” But with her cancer diagnosis and transplant, Mary Clare found that she needed to be the center of attention because her successful recovery depended on receiving care from others.

Mary Clare accepted that she needed to rest and receive care and support. She turned to the school, neighbors and community for support. “We moved away from caring for my body and counting cells to nurturing our mental health and relationships,” she says.

She offers this advice to other parents in her situation: Although it is in all moms and dads to protect their children and keep them from harm, shielding them from a serious diagnosis and not talking about treatment is not beneficial. “We chose to be very open and factual about my cancer and transplant,” Mary Clare says.

Mary Clare and her husband found that being honest with their daughter about the science of transplant had an unexpected benefit: Twila developed a fascination with medicine and biology. “My daughter helped me do my physical therapy exercises and learned to assist in changing my IV, “she says, “I found it helpful to give my daughter a role in my care.”

Choosing to be open about her diagnosis and treatment also led Mary Clare and her husband to develop a unique way to help Twila cope with her mom’s situation.

“We used a jar of buttons to talk about feelings and fears,” Mary Clare explains, “Each day, Twila would take a handful of buttons and one by one add them to a jar, naming her fears and concerns one at a time.” Mary Clare says that this activity plus formal play therapy helped Twila manage her anxiety and gave her daughter an opportunity to talk about her own needs.

These steps to manage new family dynamics after transplant worked for Mary Clare. Experts on transplant recovery note that each family is different, and that transplant recipients and their children often need help coping with changes in family relationships.

If you need help coping with family changes after transplant, you’re not alone.

  • Talk to a social worker at your transplant center. They can provide support and help you access local and national resources.
  • Find helpful advice on adjusting to life after transplant on the Be The Match® website.
  • Talk to another parent who’s had a transplant. Our Peer Connect program can connect you with a trained volunteer who’s been there. No matter where you are in the transplant process, transplant recipients like you are available to talk by phone or email, sharing their experience and tips. To request a connection, visit: BeTheMatch.org/peerconnect.
  • Get confidential, one-on-one support from caring experts through the Be The Match® Patient Support Center. We provide support, information and resources for caregivers and families. Call or email us for. We’ll listen and help you find answers. All of our programs and resources are free. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.

Craving connections after transplant: young adults reach out to peers for hope and healing

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
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Matt, transplant recipientMatt’s Story

Adulthood on hold
Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his  girlfriend, Cori. That’s when he got the news that changed everything.  He had cancer and needed a transplant.  Suddenly, life as he knew it was put on hold.

“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”

In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom.  He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.

Finding new ways to connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”

Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.

“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.

Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”

Reclaiming his adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner.  He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”

Watch Matt’s full story on Insights eCommunity >

 

Kayla, transplant recipientKayla’s Story

Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.

“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down.  The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.

Finding peer support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.

Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant.  They can relate because they’ve been there.”

The new me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”

“Transplant changed me completely,” she says.  “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”

Join Kayla on the Insights e-community. Start a discussion that matters to you.

 

Social support: tips from Insights e-community
It can be hard for others to see someone they care about go through something so difficult. You may find that some friends will distance themselves, while others are with you every step of the way. Both are normal responses to a stressful situation. Find ways to communicate openly and honestly with your friends.