Holiday Angels

The holidays can be bittersweet when living LFS. We are grateful for each day, each memory, but we also experience an unfair helping of loss.Screen Shot 2017-12-10 at 9.52.17 AM

On December 16, 2016, the Quist family surrounded 13 year old Josh as he earned his angel wings after enduring months of treatment, multiple surgeries and a clinical trial for a Glioblastoma brain tumor. Outside on a tree in their yard, hung several angel ornaments, gifts from friends to let Josh and the entire Quist family know they had an army of angels praying for them.

Screen Shot 2017-12-10 at 9.53.46 AMThis year, as the Josh’s Angelversary approaches, again angels adorn the tree in the Quist yard. Each one is a symbol that Josh is not forgotten and neither is the Quist family’s grief. Josh loved Cub Scouts, Legos and Star Wars, he earned a blue belt in Karate, and made the 8th grade honor roll. All who knew Josh, comment on what an outstanding young man he was. As Chris, Paula, and Heidi near the anniversary of his death, streets are adorned with holiday decorations. There is no timeline or playbook for grief and the holidays following loss of a loved one present new challenges. Their Angel Tree is an excellent way to remember Josh and honor the part he played in their lives, while honoring the Quist family’s grief. It can be very difficult to navigate the complex emotions of loss during the holidays. There are some things we can do to help.

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FEEL- There are a lot of complex emotions that come with grieving at the holidays. Sadness, Anger, Happiness, Guilt. It’s OK to feel all of the emotions. Be honest about your feelings, many times it takes more effort to hide feelings than accepting them. It’s a good time to watch a sappy movie or a comedy and showcase all of the feels.

MAKE- Grief changes us. Traditions of the past may not feel right. It’s OK to change traditions.  Make a new tradition that includes the loss. Just as the community came together to support the Quist family, they made Josh’s Angel Tree a new tradition that honors and remembers him. Find something that feels right, light a candle, plant a tree, watch a  favorite movie or cook a favorite meal.

REMEMBER- Sometimes we get caught up in our own grief, we forget siblings and children are grieving too. Remember these special times with the children, help give them tools to deal with the complex emotions of loss during the holidays. Many times it’s the children who help us remember the joy of the season.

CONNECT- We may not feel like being around others. That’s OK. Communicating our feelings and being with others can be difficult. It can also do wonders for healing. Be open to connecting with others and plan an exit strategy if it’s just too much.

SIMPLIFY- We may not feel like sending 200 cards out or shopping. It’s OK. Simplify holiday routines. Pick and choose what feels right and brings us peace and joy.

Just as we are forever changed by knowing special people like Josh, we are forever changed by losing them. We keep them alive through memories and this can be very difficult during the holidays. Just as grief is very personal, so is dealing with the holidays following loss. There are many sad times, but every now and again the joy creeps in and that’s OK.


Beauty in an Unlikely Place- Fannie Remembers Her Mother’s Breast Cancer Journey

Fannie learned some very powerful lessons from her mother through her breast cancer battles. She learned about self awareness, how to advocate and how she chooses to live despite living with LFS.  Thank you Fannie for sharing your memories of your mother and her strength with us.


My mom never knew she had Li-Fraumeni Syndrome. I was the first one to get genetic testing done.


Fannie’s mom. One of her favorite pictures of how she lived.

My mom died of breast cancer when I was 21 years old; she was 45. She fought a great 10 year battle. Four times she had breast cancer. She just thought she was the unluckiest person in the world. But then again her family was almost all gone, killed by different cancers. All pretty young too.


AWARENESS:  Know Your Body

My mom always said it was important to know your body. She touched herself a lot(not in a weird way) and encouraged us to do the same. So when she felt a little lump in her left breast, she knew it hadn’t been there for a long time. She got worried and off to the doctor she went. I’m not sure how diagnosis worked back then, I think now doctors are way more aware that breast cancer can hit you pretty much at any age. Her doctor simply told her not to worry about it, that it was probably calcifications and to come and see him in six months.

ADVOCACY: Knowing What is Right for You

That doctor had no idea what he was getting himself into. My mom wanted a biopsy and she wanted it ASAP. The poor doctor started to argue with her that it was really overkill and that she should wait. My mom told him in no uncertain terms that she would handcuff herself to his desk and call the media if he didn’t arrange the biopsy right then and there. The doctor finally agreed and scheduled the biopsy with the proper department.  That’s how my mom discovered for the first time she had breast cancer.


Sadly, I remember very little about my mom’s journey through her illness. I was young. I didn’t grasp what cancer could do. After all, breast cancer was an “easy” cancer, right? That’s what they told us anyway. I was also out of the house for her last two breast cancers, the harder ones. I remember one thing about my mom’s fight with cancer: her self- advocacy.


LIVING: Knowing How You Choose to Live

Did those six months change anything? We’ll never know. I like to think that her tenacity to get the biopsy allowed her to see her 5 year old daughter grow to the age of 15. Mostly, I think it allowed her to start her Li-Fraumeni journey with confidence and a sense of power over what was happening to her. Cancer can be so scary, being confident and self aware can greatly help one heal. My mom cried very little during her fight against cancer. I like to think that it was because she felt strong and at peace with what was happening to her.

After 10 years of off and on battle, my mom decided she was done with all of it: the chemo, the doctors, and the hurting. She finished her journey like she had started it-in control. She made the transition beautiful for us. She found an amazing hospice house where all the nurses and doctors could be qualified as angels. And she went, pretty peacefully. She left me, the only heir of her mutation with the strength to fight for what I want and the power to not let cancer rule my life. She was happy, even in turmoil. I wish to be happy too.