June 14, 2019

10 Things I Wish I Knew Before My Daughter Was Diagnosed With Cancer

By uclahealth
Todd Krouner with his daughter Jessica, who was only 29 years old when she was diagnosed with breast cancer. Photo credit: Rohina Hoffman

A cancer diagnosis is never easy for anyone. And it is especially hard for parents to watch their child go through difficult treatments, regardless of how old their child may be. There’s a sense of helplessness and disbelief that can be hard to digest. This was true for Todd Krouner when he found out his 29-year-old daughter, Jessica, was diagnosed with Stage 2 breast cancer early last year.

Jessica was in great health and had no obvious symptoms of cancer, so it was a surprise when her OB/GYN found a marble-sized lump in her breast during a routine check-up. It was even more surprising when that lump turned out to be cancer. Even with the cancer diagnosis, Jessica continued to work full-time as an attorney during treatment, because she never wanted to let cancer consume her life.  Jessica’s family made it a priority to be there for her, even though they live across the country in New York.  Jessica and her father even shaved each other’s heads when her hair started falling out from the treatment. “He didn’t just get a buzz cut, he went fully bald,” Jessica said. “He’s the best.”

It has been just over a year since Jessica received her diagnosis and was treated at UCLA Health and the Simms/Mann-UCLA Center for Integrative Oncology.

Todd Krouner shared these 10 lessons he learned during the process and which he wanted to share with other parents  affected by cancer:

1. You are not in control

As parents, we dedicate ourselves to protecting our children. So, when our child is diagnosed with cancer or a serious illness, it is frightening because we have no control.

2.  But do control what you can control

While you will probably feel an initial sense of helplessness as a parent, we do have some control over some important aspects when our children are sick.  First, we can have a say in the medical treatment team. We can do our best to marshal the resources to bring the best health care providers together on behalf of our child. Having the best care available can have an impact on the outcome. Second, we can be emotionally supportive. While this seems obvious, it’s not always easy. We have our own fears, we have our child’s fears, and that’s emotionally draining. It can be especially trying with adult children because we often have  been out of practice providing emotional and physical support for them. It is also a challenge to process the voice of an adult child who may be chronically irritable. What helped me was to imagine that my adult child was 5 years old. By doing that, I found reservoirs of energy and patience to do whatever she requested, be it large or small.

3. People will say inappropriate things

Friends and family will want to help and offer assistance, but few know what to say. Be a filter for the patient and be ready to steer – or even terminate – a conversation. This is easy when the guiding principle is to do what is in the best interest of the patient.

4. Control the flow of medical information

It’s important for someone in the immediate family to understand the medicine and treatment plan. Initially, the volume and velocity of new information can be overwhelming. Take notes. Ask questions. Do whatever you need to do to make sure you hear and understand what the health care providers say. Some patients want to know everything and some patients don’t. Ask your child how much she wants to know and respect her wishes. Do not assume she knows or has seen everything provided to her. I stumbled across a hideous pathology report that I assumed that my daughter had read. She had not. Whoops!

5.  Designate a director of communications

In the era of social media, everyone from close friends to distant acquaintances will express interest in the patient’s care and progress. Keeping up with inquiries can be an exhausting, full-time job. My daughter announced that her friend, Ashley, would field all inquiries. Ashley created weekly updates, and when my daughter had the energy, she would send out her own monthly blasts. Ashley’s assistance was a tremendous help.

6.  Keep the faith and cover the bases

When my Jewish grandmother was at a Catholic hospital, a priest asked her if he could say a prayer for her. She said yes. When the priest left, my mother expressed shock at my grandmother’s acquiescence. My grandmother replied, “I just want to cover all of the bases.” My daughter is highly spiritual and took her strength from all corners. Her rabbi weighed in, my wife’s rabbis weighed in, her friends and clients offered prayers, my Christian clients prayed for her and my dry cleaner prayed for her.

She sought the best western medicine that UCLA could offer. She sought the best eastern medicine from her Chinese acupuncturist who prescribed tea therapies. She sought crystal alignment from her former UCLA law professor. We took positive energy from wherever we could find it. But most importantly, it was our daughter’s choice.

7. Don’t underestimate the physical side effects of chemotherapy

Your daughter will lose her hair. She will lose eyelashes. She may lose eyebrows. She may gain weight. She may lose weight. She will not feel well. Her appearance will impact her. How people look at her will impact her. How people look at her will impact you. My daughter shaved her head and owned it. I shaved my head to support her. She shaved my head for fun. She got wigs of different colors. She made her own cancer jewelry. We shopped for fun head covers and we bought every kind of cancer accessory be it pins, earrings, and T-shirts. We branded the cure.

8. Don’t forget about the caregivers

Take care of yourself. If you are not well, you cannot help. Take care of each other and be supportive of one another. Make sure everyone is okay. Continue to maintain your daily routine of work and exercise, eat well and don’t forget to sleep. Along with the physical routines, don’t forget the emotional needs of the other caregivers. Siblings will be upset about everything their sister is going through, but they may also have fears about their own health. While my older daughter had breast surgery in Los Angeles, my wife took care of her and my younger daughter led a fundraiser for breast cancer in Chicago. She raised $10,000 in honor of her sister. I made a point to get to Chicago to walk with my younger daughter, to support her, and let her know how proud I was of her efforts.

9. Be optimistic

There is always time to be pessimistic. A wise man told me, “You don’t have to look for tsuris (misery). She will find you when she wants you.” So it’s important to be and stay optimistic eternally. I like to quote the SoulCycle Mantra: “In the end it will be okay. If it’s not okay, it’s not the end. Keep peddling.” Believe it will be okay.

10. Just be a parent

The best thing you can do for your child is just be a parent. Provide her with comfort, support and a positive outlook. You know your child better than anyone. You know what she likes.  Make her a queen for day for as many days as she is sick. This is the most difficult thing your child will ever confront. I told my daughter, and believe, that going through six rounds of chemotherapy was the most difficult thing that she will ever do in her life. After conquering her battle with breast cancer, the rest of life’s challenges will be easy by comparison.  Now that her treatments are over, her oncologist reports that she is cancer free and in remission.  Life is a celebration! And, I know that she is well when she reminds me how annoying I am.

Tags: advice, Breast Cancer, breast cancer, Cancer, cancer, featured, News & Insights, Simms/Mann UCLA Center for Integrative Oncology, stage 2 breast cancer, Uncategorized

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