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NCI-CONNECT Rare Brain & Spine Tumor Network
 

Family Support during Spine Tumor Diagnosis

, by Andrea, Ependymoma Survivor

Andrea with her family

Andrea with her family

Credit: NCI-CONNECT Staff

Andrea’s two children, husband, and parents have all been affected by her ependymoma diagnosis. She shares how they adjusted and provided support.

My symptoms began with back pain in 2008 when I was pregnant with my first child. It started with a little numbness on the bottom of my foot and back pain that wouldn’t go away. The pain remained even after my delivery. In February 2010, I was pregnant with my second child but due to some complications lost the baby early in the pregnancy. During that time I started having numbness in my leg and on my right side around my ribs. I had an MRI a couple weeks later, and found out I had a spinal cord tumor. I was shocked and devastated.

Within a couple weeks I flew to Seattle and had surgery to remove the tumor – a grade 2 ependymoma tumor in my spinal cord at T4-T7. I had a really hard time recovering from surgery. I spent over a week in the hospital, another week doing in-patient rehabilitation, then went home with a cane to help with my balance.

The next few months I did outpatient rehabilitation. My right side, from my chest down, was numb and I felt weak. I also had a lot of back and rib pain. It took a couple years before I felt descent. The numbness never went away, but it got a little better. Things kind of went back to normal and we had another child in 2013.

In 2019, I began experiencing numbness on my left side. The tumor had come back and spread through my spinal cord. I was diagnosed with an anaplastic ependymoma.  I had surgery again to remove a few of the tumors followed by two months of proton radiation in April and May 2020.

My Supportive Family

The most difficult part of my treatment, this time, was being away from home for two months during proton radiation. I was able to fly home two times, but it was hard. Due to the global pandemic, patients were unable to get together for support groups. I often felt isolated. I video chatted on FaceTime with my daughters every night and we read stories together, which was very helpful. They also sent me lots of funny pictures to make me smile.

My supportive family helped tremendously while I was gone. My husband and mom split time watching my daughters. Fortunately due to the pandemic, my husband’s full-time job was more flexible, and the girls attended school online, which was beneficial because my mom lived over an hour away.

My two daughters, now ages 7 and 12, did really well while I was away. Children are very resilient. My parents have a ranch, so the animals kept the girls busy. My mom tackled online schooling and helped them with their schoolwork. They baked cookies, did fun projects and had a lot of fun.

My husband was wonderful. He was very supportive and was always there when I needed help with side effects or to talk through treatment options. Our family and friends were amazing. They were always willing to help whenever we needed something. My mom helping not only made her feel better, but it helped the kids have fun during a challenging time.

I am still recovering from surgery and radiation. I have issues with my balance, so I go to neurological rehabilitation and physical therapy. I went back to work part-time last summer. It is hard to sit for long periods, but my boss really works with me and I appreciate being home when the kids get home from school.

Advice to Communicate with Your Loved Ones

  • Don’t be afraid to ask for help.
  • Accept help when it’s offered.
  • Be specific with what would be helpful.
  • Be open with how you’re feeling.

When communicating with our kids, my husband and I were honest about what I was going through. We also were cautious not to scare them.

Andrea

They knew I was having radiation on the brain and spine, but we tried to be age appropriate with what we shared. I was worried how they would react when I lost my hair, but they handled it great and just wanted to feel my head.

Through it all, I discovered that I am stronger than I thought. My faith and family helped me push through the difficult times.

I learned how much people care. The amount of love and support from friends and family was overwhelming, especially after the second diagnosis. It’s incredible to feel that kind of support.

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