One Mom’s Story of Living with Myeloma While Raising Two Children  

In 2013, Sue Massey received a diagnosis of monoclonal gammopathy of undetermined significance (MGUS) (https://www.myeloma.org/what-are-mgus-smm-mm). She was married at the time and had a four-year-old daughter. Because she had a young child at home, she remembers that period as being emotionally challenging, particularly since she did not fully grasp the implications of her MGUS diagnosis.

In 2014, Sue became pregnant. Upon informing her physician, he remarked that he had never previously encountered an MGUS patient preparing for childbirth. Happily, the pregnancy proceeded without complications, and Sue gave birth to a healthy son later that same year.

By January 2019, Sue's MGUS progressed to smoldering multiple myeloma. By October of that year, she had active myeloma and started treatment locally. Sue's older daughter was in sixth grade, and her son was in kindergarten. Recognizing the need to communicate her diagnosis, Sue spoke with each child individually, adjusting her explanations to suit their specific ages and levels of comprehension.

In March 2020, she had to leave her hometown in Florida to undergo an autologous stem cell transplant (https://www.myeloma.org/autologous-stem-cell-transplant) in Atlanta, Georgia. She remembers that her kids "weren't scared, but they wanted to know, 'Why is Mom gone so long?'"

Adapting During the Pandemic

To compound the impact of distance and a major procedure, it also happened to be the beginning of the COVID-19 pandemic (https://www.myeloma.org/covid19-myeloma-patients). Schools shut down, and family friends had to watch Sue and her husband's children for them.

She remembers she would keep in touch with her children online and even drive over to their friends' home to greet their children through closed car windows to avoid COVID exposures. They found ways to stay connected, despite the strain of isolation required after a stem cell transplant.

Due to Sue’s diagnosis of myeloma combined with a secondary condition that compromises her immune system, her children became adept at adjusting to new circumstances. Since the schools in her area did not mandate masks throughout the pandemic, she opted to educate her children at home. Eventually, her son began attending a school nearby, while her daughter attended boarding school for one year; these transitions were intended to help the children maintain a sense of routine.

Even to this day, both her kids — now ages 12 and 18 — still wear masks as needed to protect their mom.  Sue points out, "They are very, very protective of me, and they're supportive of whatever it takes to keep me healthy."

Sue emphasizes that masking is a personal choice, and something she adheres to due to her two immuno-compromising conditions.

Learning How to Talk About Myeloma Through the Years

As Sue's children have grown up, so have her conversations with them about her myeloma. Sue said, "What they wanted to hear about, and what they were open to hearing about when they were younger has shifted. They're older now, so I can ask them, 'How much do you want to know about where I am?'"

Sue chooses to give her children only the "information that makes them feel comfortable." She realizes that "They don't want to know as much as they used to. They have seen Mom go through a lot, and they want Mom to just keep being Mom. Yet they always understand the situation and are supportive."

Sue has learned not to underestimate the comfort and empathy that her children can provide. In a rare moment while her daughter was still young, around 11 or 12 years old, Sue found herself upset and telling her daughter, "This is not your burden to bear."

And even at her young age, Sue's daughter responded, "Mom, it's okay. We all have feelings and need to express those. It's okay for you to do that."

Through these life lessons and her trajectory with raising children while living with myeloma, Sue has learned that talking about a myeloma diagnosis is "so personal to a particular family."

Finding Community Support

As the Support Group Leader of the MM Families Support Group (https://www.myeloma.org/support-group/mm-families), Sue advises families to meet their children where they are at. Some are "direct and open." Some may need explanations of myeloma painted in "broader strokes." And finally, Sue also gives space for families who do not want to share their diagnosis with their children. She understands it's all very personal. She says, "I don't think there is one right way [to talk about myeloma with your children]."

Sue says the beauty of the MM Families Support Group that "it brings together families who are all in the same boat. We meet each month to share how we manage and navigate our lives. It is a wonderfully supportive community."

Strengthened Through Spiritual Practice

Beyond her supportive community and her obvious deep bonds with her family, Sue finds what matters most to her family now is their faith. She says, "Faith has carried me through this and gotten me much stronger. And I think that has resonated with our kids. Throughout the whole journey is that deepening relationship with God. The children see that, and it has made us stronger."

This strength carries the Massey family through uncertain times. Sue says God has given her "this opportunity to steward these children, and I'm going to steward them to the best of my ability and love them and guide them. But at the end of the day, God has them." Grounded in this trust, Sue knows that no matter what happens to her, this faith will carry on with her children. Together, the family has found empowerment and confidence through their spiritual beliefs and practices.

Connect with Sue and the MM Families Support Group  

With this fortitude, Sue can give back to the myeloma community. Connect with Sue at the MM Families Support Group (https://www.myeloma.org/support-group/mm-families) if you are living with multiple myeloma and need support for your family as a whole.