What I’ve learned as a mom and brain tumor caregiver
In May 2017, my 20-year-old daughter Brooke came home after her college finals with increasing headaches, vision problems and some strange “feelings” that we couldn’t explain. To make a long story short, we ended up in the ER the day after Memorial Day. An MRI showed a large mass creating a lot of pressure in her brain. Within hours, we were at MD Anderson, and within days, Dr. Frederick Lang was performing the 11-hour awake craniotomy that saved her life.
We’ve been living with a grade II astrocytoma diagnosis since that day. I say “we” because when someone in your family receives a brain tumor diagnosis, it affects everyone. Life changes in every way.
People often ask me what it’s like to be a caregiver for a child with cancer. The truth is I’m a mom, and you can’t separate the two roles. Here’s what I’ve learned as a mom and caregiver to a daughter with cancer.
Take it one day at a time
As moms and caregivers, we must be the strength our loved ones need, especially when they are weak. I must be positive and hopeful when she is fearful. I find myself walking around with a broken heart held in God’s hands daily. He has given me the strength to endure and persevere through the darkest of days and walk through my deepest fears. More times than not, I only have enough strength for one day. But then I wake up and find the strength to face another day. Each day’s courage comes as it is needed.
A mother is always a mother
I’ve actually found myself in the cancer caregiver role before. Five years ago, my 63-year-old mother was at MD Anderson for acute myeloid leukemia. We lived in Chicago then, and I flew to Houston for her inpatient treatments. She was surviving on daily blood transfusions. We knew she wasn’t getting better, but continued to hope.
After about six weeks, we agreed that I would fly back home for a few days to see my kids and husband since I had been gone for so long. My mom hated that I was away from them. I flew home on a Wednesday and that evening she passed quietly. The nurses said she needed to know I was safe at home with my husband and kids so she could go in peace. It’s what moms do. They always put their kids first despite their own illnesses, fears and challenges.
That’s why I say you cannot separate the role of caregiver and mom. When your child is good, you are good. When they are not, you are not. When I know my daughter is feeling well and tolerating her treatments, I find it easier to manage the rest of life. When she is struggling, I am challenged to put anything else above her needs.
It’s OK to accept support
Over the last year, I’ve learned that caring for a loved one doesn’t always mean being the savior. Sometimes it’s just about learning to accept help. Receiving is hard for me. I have been overwhelmed by the generosity of people and never want to take away their joy when they want to help. I’ve learned that sometimes just allowing someone to bring me food or pick up something at the store can make a difference in my day and theirs as well.
You can help #endcancer
As a caregiver, do yourself and your loved one a favor by learning everything you can about their disease and becoming an advocate for research. May is Brain Tumor Awareness Month, but since Brooke’s diagnosis, brain tumor awareness has become a year-round priority for me. I’ve learned there are so many new advances in development for brain tumors, and funds are needed to support research. MD Anderson has some promising brain tumor research programs, including the Glioblastoma Moon Shot™ and Delta-24 clinical trial led by Brooke’s neurosurgeon. This year, I joined The Broach Foundation for Brain Cancer Research, which supports this important research at MD Anderson. I try to do my part to raise awareness and funding for this devastating disease.
Whether you’re part of a brain tumor survivor family or have another cancer diagnosis in the family, my best advice is to be positive, be hopeful and be an advocate. Together, we can end cancer!