Conditions

Mom of Cancer Survivor is ‘Grateful to Give Back’

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Jacobs Family

CaringBridge user Karen and her husband Matt with their children Kate (cancer survivor) and Ryan

With 9 years now passed since my baby daughter finished active treatment for stage IV neuroblastoma, I don’t think about cancer every day anymore. I am probably down to a few days a year. Maybe, eventually, it will become only once a year, for Kate’s long-term follow-up. Wouldn’t that be nice?

Badges of Honor

My girl is 10 now, a sweet redhead with big brown eyes. While scars on her body from surgeries, biopsies and a central line for chemo are “badges of honor”—marking her as a cancer survivor—Kate has no memories of what was an agonizing and traumatic experience for our whole family. We have scars, too.

In some small way, I am glad Kate was a baby and not able to remember any of her 8 months of treatment. She wasn’t able to talk yet, but she was fully conscious, and in a lot of pain. But she did not cry. She used to clasp her hands—like praying hands. It was her signal of pain. That was her state of being.

But just as Kate has healed physically over the years, I have healed emotionally. CaringBridge has played a big role in that. I did not start a website for Kate with the intention of healing. But that is what happened. It has been such a valuable life link.

Searching For Positive Cancer Stories

Early on, I was desperate to read anything about neuroblastoma that was not terrifying. I wanted to find a success story, but I kept seeing, “50 percent die.” (Note: Everyone tells you after a diagnosis not to search the Internet. But you do it anyway. And then you often wish you hadn’t.)

I became CaringBridge friends with another Mom whose son had neuroblastoma. We became friend-friends, from being in the same bad movie together. Her son did not survive, but she and I remain connected through her work as a neuroblastoma activist. She gives back to honor his memory.

Giving Back

I do my best to give back, too, as much in gratitude for my Kate’s positive outcome as to support the families of any kid facing cancer. We all share a raging hate for this disease. But I have found that giving of my “time, talent, treasure,” as the saying goes, has helped transform my strong emotions into healing.

For me, healing came through the hundreds of CaringBridge Journal entries I wrote when Kate was in treatment. And I felt it when a former colleague, on the verge of a neuroblastoma diagnosis for his son, asked me to come to the hospital. I couldn’t make the cancer go away, but it was so powerful to be there with them.

At a practical level, I have been able to contribute to improving technology at the hospital where Kate received her treatment. I am also a supporter of the Children’s Neuroblastoma Cancer Foundation, for which we once organized a garage sale that raised almost $10,000. This story sticks with me: We were about $1,000 short of what we had hoped to give to CNCF. I was thinking about how to make up the difference, when there was a knock at our door. A couple who had been following Kate on CaringBridge simply handed me an envelope with a check for $1,000. It was magical.

Support and Healing

More recently, I was invited to join the Board of Directors at CaringBridge, where I get to see support and healing from the other side. It takes my breath away. At a recent Storyteller breakfast, hosted by CaringBridge as part of Giving Tuesday, my husband, Matt, brought Kate, and our son, Ryan, to the event to say a quick hello before school.

I was interested to gauge Kate’s response. She knows she is a cancer survivor, but she is still a young girl. The breakfast scones interested her more than the room full of grownups gathered to celebrate and support CaringBridge.

But now Kate is starting to put things together. I have a feeling that as my daughter grows up, and begins to “own” the sharing of her health story, she will inspire and encourage others to get the help and support they need. It will be Kate’s way of giving back.

Here When You Need It

Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website, where you can share updates and receive encouragement and support from your community.

Comments (4)

Michael Ahuja Feb 22, 2017 4:44am
beautiful article
Ruth BARNES Dec 17, 2016 6:52pm
Dear Karen and Kyndal.....I read your stories and I do not feel so alone and desperate. My son, my only son who is 38 has b cell lymphoma. He is stage II and has undergone 7 chemo treatments. The first 4 were the Red Chop. A PET scan revealed one lymp node with a high met.activity so he was placed one the R-ICE regiment to try and shrink the stubborn lymph nodes. In his medIan sternum. He has had another. PET scan and Monday December 19 we will get results. How do you get thru each day waiting to hear if your child is in remission without breaking down and fearing the worst. Even with my faith and trust in God I cannot help be fear the worst. How do you cope. Please help.
Shanthana Dec 16, 2016 11:27pm
This idea is mind blowing. I think everyone should know such information like you have described on this post. Thank you for sharing this explanation.Your final conclusion was good.
Kyndal Dec 06, 2016 10:49am
Hi Karen, it's Kyndal. I just read your story about your beautiful daughter Kate. Your dauter Kates story sounds a little bit like a friend of mine. My very sweet and very special best friend Her name was Chyanne Scott, she was such a precious little girl. I would to tell you a story about my very special bestest friend Chyanne. If you don't mind. My very sweet and very special best friend Chyanne had muscular Dystrophy. Muscular Dystrophy is a group of muscle diseases that results in increasing weakening and break down of skeletal muscles over time. She couldn't walk or hold her head up very good. And then my very very sweet and very special good friends of mine, their names are Eric and Kacy Scott, my very special best friend Chyanne's dad and mom, they took her my very special best friend Chyanne to the doctor and the doctor gave them the news that no parent should ever hear, cancer. My very sweet and very special bestest friend Chyanne had a brain tumor, it was on her brain stem. Watching my very sweet best friend Chyanne going through that broke my heart. It was so hard watching my best friend Chyanne go through what she went through. She spent a lot of times in Hospitals. Well she started going down hill fast and her health began to fade, on Tuesday night of Febuary 4th 2003, I lost my very special best friend to a brain tumor:( That Tuesday night I could hear my mom and dad talking on the phone, but I didn't know what was going on at the time. My mom and dad didn't want to tell me what happened, cause they new it would upset me and scare me. I didn't know about my very sweet bestest friend Chyanne until that next morning which was that Wednesday. A friend of me and my mom and my dad's her name was Janice, she came by, and that's when my dad told me the news about Chyanne, as soon as my dad told me about my best friend Chyanne, I lost it. It's so hard talking about this, I'm starting to get a lump in my throat, you know that feeling in your throat where you feel like you want to cry, I'm feeling that as I'm typing this. I'm so glad my very sweet friend Janice was there to, to help me as I lost my best friend Chyanne. When ever Febuary 4th rolls around, it gets hard, it never gets easy. I miss my very sweet and very special best friend Chyanne. I know she wouldn't want me to be sad, I know she would want me to be happy and to remember all the good times that me and her had. I always try to do that, but it's not easy. I know that she's watching over me. That helps to know that. But it still doesn't bring her back. Hey Karen, thank you for letting me share my story of my very sweet best friend Chyanne with you, Kyndal.

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