What happens when a child life specialist becomes the patient? Learn how Deb Vilas’ uses her child life tools to cope with her breast cancer diagnosis, treatment and remission!
This is a story about one woman’s courage to help fight her sister’s breast cancer.
As a fellow child life alum at Bank Street, Kim is using the skills that she has learned to help support her sister, find ways to cope and navigate on the devastating news of the diagnosis.
I encourage the readers to share her story, learn coping strategies and try to stay optimistic when faced with difficulties in your life.
Here is Kim’s story:
I decided to become a child life specialist after volunteering on the pediatric floor of Memorial Sloan Kettering Cancer Center. I loved helping families through one of the hardest moments in their life. It was immensely gratifying to be let into a child’s world and to be part of the healing process. My thought was that I cannot change their medical outcome but I can make someone’s day better.
As a volunteer and later a child life specialist, I have helped families navigate through the cancer world and have had my share of bereavement support. But now I find myself on the other side of the coin. On June 4th, my sister Tiffany was diagnosed with breast cancer. Tiffany is my best friend. She is 32 years old and was married just a month and a half before she was diagnosed. This news felt like a kick in the gut. It was so unexpected and devastating that it took me a while (it took us all a while) to process.
One thing this journey has taught me is that I am an instrumental griever. Apparently my way of coping is to be constantly doing something. From the minute I got that dreadful phone call, I was making a mental list of everything I could possibly do to help. Here is the trial and error of what I found:
- I ran interference. I sent out emails to our friends and extended family to break the news. In the email I had a list of things NOT to say and a list of ways they can help. I explained what the next steps were and pleaded for people to ask any questions to me, so Tiff would not have to answer them. Tiff said that telling people about her diagnosis at first was really hard. She would be okay until she had to explain what it all meant. I also drove with Tiff to my parents’ house. She was going to tell them over the phone, but I knew it would help them to see her in person. I made whatever jokes I could to lighten up the news and it was still awful. But somehow less awful?
- I researched. Knowledge is power, right? I looked up the diagnosis, every possible prognosis, stats, different clinical trials, patient experiences on forums etc. This made my mind spin. Cancer tends to be more aggressive when you are diagnosed in your early thirties and to be honest, what I was reading scared the shit out of me. I felt myself becoming more overwhelmed, and it was not doing me any good. So after the third day I stopped doing this. I limited my research to looking up resources and preparation for different tests and procedures.
- I made a list of questions. I accompanied my sister to her first doctor’s appointment and had a five page list of 90 questions for her oncologist. Having both worked in the medical field was a plus and minus for us. On some level we felt semi-prepared, but on the other hand we wanted too much information too soon. At this point my sister was in a state of shock and barely had ten questions written down, so I did what child life teaches us to do and I advocated for her. I got all 90 of my questions answered, much to our oncologist’s bemusement. And I wrote down the answer to every single one of them. My sister is a super competent and extremely composed person. But no matter how together you are in every day life, nothing prepares you for this moment and everything is a blur. The best advice I can give to any patient, regardless of age, is to have them bring someone who can ask questions on their behalf and record the answers.
- I raised money. My sister is a fellow career changer and started a nursing job six months prior to her diagnosis. Turns out this means she does not qualify for FMLA leave and was told she would be losing her insurance and weekly pay. Right away I knew I wanted to do a fundraiser for her. Fertility treatments alone are thousands of dollars out of pocket and the bills were quickly adding up. This fundraiser saved me. It gave me a sense of purpose and made me feel like I could see something tangible that was helping her. I found a website that was super easy to set up (YouCaring.com) and I emailed everyone I know asking for help. Tiff would never ask for help and I feel that many people in her situation would be afraid of burdening anyone. But I truly believe that if you ask, people will surprise you. Everyday I was overcome with gratitude at how generous and thoughtful friends, family and complete strangers were. This fundraiser was a surprise for Tiff, and it really gave my whole family something to look forward to everyday. I cannot stress enough how much of a role this played in maintaining my sanity and making me feel useful and positive.
- I played nurse. Tiff’s mastectomy really affected her range in movement and limited things that we normally take for granted, like the ability to wash ourselves or carry groceries. She used to be a star athlete, so this was particularly hard for her to get used to. But I think that me stepping in to help without waiting to be asked made this part a little easier to accept. There is a fine line between being too pushy and just pushy enough. I had to take a few workdays off for this, but it was more than worth it to me. The time we spent together during these days off brought me closer to her and kept me focused on the task of just being a healing presence.
- I learned to grieve and then move on. There are so many losses that come with cancer. Fertility, the hopes of starting a family soon, financial stability, being out of work, family get-togethers that are missed due to doctor appointments, hair, fears of mortality, pain from surgery and chemo, loss of independence, new fear of thinking about the future…. All of these things made my stomach turn. But giving myself a moment to confront these things and be upset allowed me to not drown in these emotions. I really believe in confronting the emotion and then pushing it far back and replacing it with positive thoughts and whatever silver lining can be found.
- I shaved my head in solidarity. I just didn’t want her to feel alone. Losing her hair was a big deal for her, for obvious reasons. To lessen this blow I did everything I could to turn this into something empowering. We went wig shopping together and had a hair shaving party after her first day of chemo. I have heard one of the hardest parts of losing your hair is seeing it fall out in clumps for the first time. So I tried to spare her of this. We also splurged on two wigs for her. Having a wig that looked amazing was a confidence booster, and I hope it will help normalize things for her on days that she wants to go out without having people automatically tag her as a cancer patient.
- I hug her. I believe that touch is intrinsically healing. I tried reiki and sometimes I’ll massage her back because sleeping in a comfortable position is very hard for her now. I give hugs if I feel like she is holding in a cry. Tiff almost never cries. Her whole life she has been the strong, silent one. But if you don’t let the emotions out it will keep building up. Sometimes just hugging her unexpectedly is enough to let it out.
- We laugh A LOT! I have made a fool of myself with silly dances, funny pictures and inappropriate jokes. But laughter heals. Someone once said that the equation for comedy is tragedy and time. Finding the humor in a sucky situation can ease tension and open us up to the absurdity of a situation and the idea that it just HAS to get better.
10. I vent. I cry all the time out of the blue. I allow myself to be comforted by great co-workers. I let my husband take care of me. And I ask for advice all the time. I also take a few minutes each day to pray or just put into the universe positive thoughts that I want to manifest.
11. I committed to doing a 39 mile breast cancer walk. I am in no way physically fit. I don’t even own a pair of sneakers. But I am determined to do this walk because it will raise money and awareness for research and it makes me feel like I am doing something. I am probably a fool for starting off with such an intense walk and will probably need a hip replacement after this, but this is what fear and love and everything in between does to you. It makes you not so practical. But I rather attempt this and fail then not try at all.
12. I scheduled something fun to look forward to. Whether it’s a fundraiser or a family vacation to celebrate the end of chemo and radiation it is important to set goals. I have been pretty bad about self-care, but I am determined to schedule some date nights with my husband and to catch up with friends over dinner.
The cancer world has felt all-consuming. But at the end of the day I am so grateful for the support we have received and the strength we gain every day from this experience. Nothing prepares you for having someone so close to you go through cancer. All you can do is take things one day at a time and look for the good.
The statistics are frightening, 1 out of 8 woman are diagnosed with invasive breast cancer. When you think about it by looking at seven women in your life and also in the mirror (if you’re a woman) than someone in this group will get this diagnosis. It becomes more real.
I am in this situation. A close friend and mentor to me in the child life field has just recently been diagnosed with breast cancer and has started the beginning stages of treatment. She just underwent surgery in both breasts to remove the cancerous cells and is still recovering from the gaping four inch wound to her chest. The positive side of this is that the doctors didn’t discover any cancerous cells in her lymph nodes and are still pending on further testing. She will begin radiation soon and there is still a possibility of chemotherapy treatment.
The irony of this:
I have been educated and trained by my mentor to work with children and families who are diagnosed with illnesses including cancer. Now, she has this diagnosis and my role as a friend begins to change.
I see myself having to take time to process what she is going through. I have to find outlets to express my own thoughts and feelings of shock, anger, sadness and empathy. I then put my child life hat on and provide therapeutic support to her.
- Validation of feelings- all of them
- Encouragement- Even to just rest, heal, smile, laugh and lean on loved ones for support
- Navigation-Her journey through treatment and to remission
- Paying it forward- Rallying a team to walk/run in a fundraising cancer organization in her honor.
- Commitment- Continuing to check in- not just when I first got the news but throughout this process and beyond.
After I write this down, I realize that it becomes natural for me to go into the child life specialist role, but it is also a role that any friend or loved one could do.
Cancer effects everyone. It hits the person who is diagnosed the hardest but it also has a rippling effect to all of their friends, family and community. Sometimes the people who are secondary to the diagnosis need to be able to find support and coping strategies to deal with the emotional impact that it causes. Children should be involved as well. They should be told what is happening in a developmentally appropriate way and have outlets to express their thoughts and feelings.
Have you found yourself in this situation before? What types of support did you provide? Did you find yourself having a hard time coping with a loved ones diagnosis?
For further information on ways to help provide support to families and children dealing with an illness, check out the Child Life Council or ask for a child life specialist at the hospital where the patient is receiving treatment.
Here is the direct link to my team on American Cancer Society, Making Strides Against Breast Cancer; in honor of my friend.