When Your Child Passes Away From Ewing's Sarcoma Cancer: What I learned as a Mother•
Posted on February 25 2019
"I feel like I have the flu" my daughter, Kelsey, said as she arrived home after her college graduation from Union College in upstate New York. It was the summer of 2010 and we were all feeling jubilant. Kelsey was on her way to a new career at Wayfair in Boston and our younger daughter was excited to start her freshman year at a new high school in Redmond, Washington.
In high school, Kelsey had been an exceptional athlete helping her basketball team, in her senior year, go all the way to state. She also played softball, typically first base, because she was tall 5'10". When she was 14 her team participated in the World Series for girls softball. Kelsey had been interviewed and her contributions (2 singles that drove in 2 runs) highlighted in the Seattle Times helping the team clinch second place in the world. She was so strong I truly believed back then that nothing could bring her down.
However, throughout that summer and into the fall, Kelsey had been experiencing tremendous pain in her pelvic area. She went to the doctor, but because she had been injured so many times playing sports, it was suggested that she see a physical therapist. I continued to think it would just get better, but it never did and eventually, I found a rehabilitation doctor in Boston for her to see. By this time, she was starting to limp. She was also taking huge amounts of Ibuprofen.
We were lucky in the fact that the rehabilitation doctor suspected her excruciating pain was more than an old sport injury. She was also good friends with one of the leading surgeons at Dana Farber Cancer Institute in Boston. She quickly referred Kelsey to Dana Farber and after a biopsy and two second opinions, it was determined that Kelsey had Ewing's Sarcoma Cancer.
What I learned as a mother (Sarcomas)
Of course, we were devastated, we knew nothing about sarcomas. However, what I learned is that sarcomas originate from connective tissues, such as bone, muscle, fat or cartilage and according to Dr. Vincent Y. Ng, assistant professor of Orthopedics at the University of Maryland School of Medicine, 1 in 1,000 families will have a child affected by sarcoma. Sarcomas are also more common in children (15% of cancers in children) than adults (1% of cancers in adults). Most sarcomas, in particular Ewing's Sarcoma, are diagnosed in teenagers; the average age of diagnosis is 15 years.
Sarcomas are also called the "sport tumor" because it's a tumor that mimics a sport injury. The challenge then becomes diagnosing the condition correctly. Time is crucial because it's an aggressive cancer that can easily spread to the lungs. What would I have done differently in Kelsey's case? Given her high level of pain that would not go away (if experiencing this more than 2 weeks), I would have requested MRI studies be obtained before moving forward with any treatment.
I also learned that sarcomas have not been studied as much as more common diseases. In his book, What Doctors Cannot Tell You: Clarity, Confidence and Uncertainty in Medicine, Dr. Kevin Jones describes a sarcoma patient who was not diagnosed for a whole year. It wasn't until he fractured his leg that he was diagnosed with a sarcoma. Therefore, it's imperative that you receive your medical diagnosis and treatments from a reputable institution that specializes in sarcomas.
Family and Friends
Family and friends even childhood friends and classmates were shocked by the news, but immediately stepped in to lend support by sending texts, care packages, cards, and visiting during treatments and outside of treatments. Kelsey always made everyone feel comfortable by using her wicked sense of humor. One day she tweeted, "Apparently, I am suffering from male pattern baldness" (in reaction to her baldness as a result of chemo treatments). She used the hash tags #sexyhairdo and #youreAllJealous
What I learned as a mother (Family & Friends)
Don't be afraid to interact with the child, adolescent, or adult with cancer. They need you more now than ever. The child with cancer who is not invited to the birthday party will be devastated. We were fortunate, Kelsey was invited to many events and activities. She was even invited to be a bridesmaid in two weddings. By this time, she was very weak and using a wheelchair, but she took her role as bridesmaid very seriously, she had to have her dress altered several times before it fit just right. Kelsey passed away before she could participate in the second wedding. However, her good friend honored her in such a beautiful way. When the first bridesmaid came out, she carried two bouquets of flowers. Before she took her place she gently kneeled down and placed one bouquet on the ground where Kelsey would have stood. It was all very special and touched us in a way that we will never forget. The point is both young women invited Kelsey to participate when they knew she was having serious health concerns regarding her cancer.
If you can imagine this...one minute you are an active "normal" family and the next minute your "normal is a "new normal". Cancer just doesn't impact the person who has been diagnosed, it affects everyone, in particular, your other children.
I don't know how she did it, but our younger daughter was stellar never acting out nor seeking any additional attention. I think from the beginning she sensed the urgent nature of what we were dealing with and she was going to do her part...taking advanced classes at school and participating in activities that we approved of.
What I learned as a mother (Siblings)
Just like the rest of us, our youngest daughter (age 14-18 at the time) was very resilient. We bounced from success to heartache year after year and she was right there with us. We never kept information from her. She was in Boston for many of the surgeries, she was on a four-way telephone call with Kelsey's doctor when he said he thought we should move Kelsey back to Seattle and she was there when her doctor said there was no more they could do for Kelsey.
My only regret is that I did not approach her about joining a support group or gather information for her from the National Cancer Institute When Your Brother or Sister Has Cancer: A guide for teens. I think this would have helped with the many emotions she was experiencing.
Kelsey worked throughout her treatments and by this time, she was working for a subsidiary of Wayfair called Joss & Main. She absolutely adored her job and loved the people she worked with. She was well liked there too and received a promotion as assistant manager for one of the teams. Her place of employment helped her both financially and emotionally. When it was questionable whether or not the insurance would pay for a procedure, they stepped in. When Kelsey was away on medical leave, they came to visit. They did all the right things (When a Co-worker has Cancer) like asking Kelsey if it was a good time to visit and sending "we miss you" notes, texts and emails.
When Kelsey passed away, they paid for and organized a Celebration of Life for her in Boston. They presented us with a scrapbook full of photos and co-workers' memories of Kelsey. Here's what one employee said, "KG was the most confident and humorous person I ever met. She was never afraid of what other people thought of her. One great example of this was her first Halloween at Joss & Main. Some people would dress up, but not many people would go ALL out. Well, KG came into work dressed in a bacon costume. Yes, bacon. It made my Halloween seeing her in important meetings dressed as a piece of bacon. That was just KG- brave and funny."
What I learned as a mother (Co-workers)
I learned how incredibly generous and humane a business and its employees can be. I learned how important it is to stay working if you can during treatment and I learned the importance of camaraderie. It allowed her to escape from her illness for brief periods of time...and be "normal" again.
Chances are a family member or friend will approach you about organizing a fundraiser and in our case, they approached my daughter. The first fundraiser was a race that eleven young women organized to raise funds in Kelsey's name for the Dana Farber Cancer Institute in Boston. I was amazed that they were able to raise $10,000. In the years to come, individuals ran in the Boston Marathon or other races in Kelsey's name or participated in the Cycle for Survival for rare cancers.
Kelsey along with many others from Wayfair participated in the J.P. Morgan Corporate Challenge. I was so proud of Kelsey. She had just finished treatments that day and she was participating in a 5K run on crutches! It took her 1 hour and 29 minutes.
The races or runs were the perfect fundraisers as the money was supporting cancer research. However, one day Kelsey called me and said her friends wanted to have a fundraiser for us to help defray the cost of treatment and related expenses such as travel expenses from Seattle to Boston each month. It is true cancer treatment is expensive. Studies have shown that "30% to 50% of U.S. families with a child diagnosed with cancer had at least one parent stop working to provide care for that child. Previous studies reported that approximately 15% of U.S. families fell from above to below the poverty level due to treatment-related financial burden." However, we were able to manage and did not need to take out any loans. I have to admit, I was hesitant at first only because I have always been the giver and not the receiver. I didn't think it was necessary, but I let Kelsey make the final decision.
When I arrived at the event, I was totally blown away. Her friends and their families had worked so hard to make it successful. They rented a private room above a pub in Boston, they had food and an awesome silent auction (thanks to Wayfair and Joss & Main and many others). They put together a video of Kelsey's life and even had a cake made to look like our family dog.
What I learned as a mother (Fund Raising)
Let them organize the fundraiser even when you are able to manage all the medical and related expenses financially. Family and friends want to help and this is one way they can. If they do plan a fundraiser, make sure it is implemented appropriately. I remember reading about a teenage girl in California who had been diagnosed with a sarcoma. Her school wanted to have a fundraiser for her so they decorated the school in pink. Please note: each cancer disease has a different colored ribbon associated with it. For instance, breast cancer is pink, childhood cancer is gold. This young woman was so disappointed when she arrived at the fundraiser.
In Kelsey's case, the fundraiser functioned not only as a way to raise money but as a celebration of Kelsey's life and Kelsey got to attend! At the end, in a very emotional speech (there were only a few dry eyes), she thanked everyone and in her own way let her friends know how much she appreciated them and their love and support.
Celebrate the Successes
There are many ways to celebrate the end of treatment and for someone with sarcoma, it's a grueling period of time. Sarcoma patients may receive 2 or 3 of the following treatments: 1) surgery, 2) chemotherapy, and 3) radiation. For Kelsey, her treatments lasted 8 months.
Small children may signal the end of their treatments by ringing a bell. Others celebrate with family and friends. I read about one young man who had sarcoma and had to stay in college to keep his health insurance. He took classes online during his treatments. However, when he finished he celebrated by attending college on campus.
For Kelsey, we celebrated all weekend on Nantucket Island and had a "Peach Fuzz" Party where we celebrated the end of her treatments and also the return of her hair.
What I learned as a mother (Celebrate the Successes)
I learned how important it is to celebrate all milestones no matter how big or small because it gives young children, adolescents, and young adults a sense of accomplishment. The end of treatment is an exciting time for them because for the first time in a long time they get to shift focus away from treatment and begin to live a new "normal" life. It's also a time for adjustments. How much can they handle, will they be able to resume normal activities right away or will they need more time. This guide is a great resource and was written to support caregivers when someone they love has completed treatment.
If you are going to celebrate together, you need to also learn how to grieve together. No more than three months went by when we received a call from Kelsey's nurse. "I'm so sorry," she said. "Kelsey wanted me to contact you, she didn't know how to tell you that her cancer has returned" she continued. So once again, we put on our fighting face and anxiously awaited next steps.
Believe it or not, they still use amputation as a treatment choice. Young people have arms, legs amputated to save their life. In Kelsey's case, she had a partial hemipelvectomy where they perform a pelvic amputation. Her procedure was internal which means her leg was spared. However, she would need to walk with crutches and then a cane for the rest of her life. Basically, Kelsey had to learn to walk all over again. The whole procedure was so painful, she was placed in critical care for days, but Kelsey got through it and friends and family came together once again in support.
Kelsey eventually went back to work. I was amazed by how much she could actually do. She never complained nor did she let anything get in her way of having fun. However, it was on a family vacation that we noticed Kelsey was coughing more than usual. Little did we know that our worst fears were coming true...the cancer had metastasized to her lungs.
It was the end of 2013 and Kelsey had been accepted into her first clinical trial. It was a strange drug she would be taking that instead of losing her hair, the treatment side effects would turn her hair white. By Christmas, it was starting to shrink the tumors, but soon after her 26th birthday in February, the drug was no longer working and they decided to take her off the clinical trial.
By April and May of 2014, it was evident that Kelsey was losing weight and getting weaker and weaker. While friends came to visit that summer, Kelsey was no longer able to keep up and eventually needed medical attention. She was taken to the University of Washington Hospital where she received fluids and then released.
In July, we went back to Dana Farber in Boston for one last surgery...they were removing her tubes that helped her pump fluids from her lungs. I just remember feeling like doors were closing for us. It was a terrible feeling and one I fought against for a long time.
That summer, Kelsey traveled to five states California, Connecticut, Virginia, Massachusetts and home to Washington. We saw a lot of family and friends. We flew Jet Blue when it was time to travel back to Washington State. By this time, Kelsey was using a wheelchair full time and she was heavily medicated. She was in so much pain. When we boarded the plane, Kelsey had her hood up over her head. To be honest, I'm surprised they let us on. Kelsey was drifting in and out of consciousness. When we landed, the pilot and flight attendant stood at the front of the plane looking at us while accessing our needs. I know what they were thinking. I just looked up and said, "we're home now".
The pain was so intense for Kelsey that at night and every 15 minutes, she would call for my husband to re-position her and the next time, she would call for me. I later thought how considerate she was of our needs during the end of her life...alternating so we could each take a break.
All week her high school friends came to see her. They didn't just stay an hour or two, but four hours straight one day. Kelsey was in bed now not saying much, while we were all talking and reminiscing. One day, one of her friends brought some popsicles she had made. She asked Kelsey how she liked them and Kelsey gave her the "thumbs up" sign. They gave her a friendship bracelet and one of her friends showed her a video message from the kicker on the Seattle Seahawk's football team. Her dad had been one of the team doctors and the message was full of encouragement.
On Monday I was to take Kelsey to her doctor in Seattle, but I had no idea how to get her there (we needed a two-person lift to get her in and out of bed). On Friday, I called hospice and asked if they could come to the house instead and re-access Kelsey's pain medication...my daughter was experiencing a great deal of pain. At first, they said they couldn't, but I begged them to come and they finally adjusted their schedule.
Friday night, I slept with Kelsey and massaged her legs. She was retaining fluids in both legs from the surgery she had a week or so ago in Boston. Unlike the days before, it was a peaceful sleep hearing her groan only a couple of times. When I awoke the next morning, Kelsey had passed away.
What I learned as a mother (Grieving Together)
When the nurse from hospice arrived that morning, I, very emotionally, shared the news of Kelsey's death. She immediately shifted her focus and began the process of laying out Kelsey's body so close family and friends could pay their last respects.
What I didn't anticipate is that Kelsey's high school friends would want to come back to say "good-bye". I was not going to deny them that opportunity. They were grieving just as much as we were. So in the end, our closest friends and Kelsey's closest friends all grieved together.
I think whenever you have a child pass away, you want people to remember them. This was certainly our case. Kelsey was brave and fought hard throughout. I often thought, if there was a medal of honor for cancer, my daughter would have been among the first to receive one.
After her passing, we arranged with others to celebrate Kelsey's life in three locations that meant so much to her. The first one was in Kirkland, Washington her childhood home, the second was in Boston, Massachusetts and the third was held on the campus of her alma mater, Union College in upstate New York. A tree was planted in her memory and the Kelsey Hastings Golitz Memorial Fund for Cancer Research was established. Each year, a grant from the endowment is awarded to a student conducting cancer research.
To further honor our daughter, we created a college care package business called hugabox. We send care packages to college students across the United States. Kelsey helped design the business before she passed away. When her health was starting to decline, I began a dialogue with her about starting an eCommerce business. She did not want to leave Boston so I thought the business would give us something to do when she made the difficult decision to move back home. We give 90% of the proceeds to six major sarcoma centers across the United States. In 2018, we donated over $10,000 to the major sarcoma centers and other cancer-related services.
What I learned as a mother (Legacy)
Now that I have the time to advocate on behalf of sarcoma cancer survivors and those yet to be diagnosed, I've learned a great deal. For instance, sarcoma treatments have not changed much for the last 30 years. According to the Liddy Shriver Sarcoma Initiative, "Sarcomas are among the most life-threatening cancers that children face" but, receive a disproportionate (on the low side) amount of the pediatric funding which is 4% of the National Cancer Institute's annual budget.
At the Childhood Cancer Summit in 2018 during Curefest in Washington DC, a teenager asked the new Director (Dr. Ned Sharpless) of The National Cancer Institute why childhood cancer only received 4% of the annual budget. Part of his response was to be patient. I truly believe he is trying very hard to equalize funding, but when kids are dying because progress has been stagnant due to lack of funding, it's hard to justify being patient.
On a more positive note, a great deal has been accomplished in the past couple of years. They include:
1) The RACE for Children Act was signed into law in August 2017.
It requires companies developing targeted cancer drugs for adults to also develop those drugs for children with cancer
Increase opportunities for childhood cancer research
Improve efforts to identify and track incidences
Enhance the quality of life for survivors
Ensure publicly accessible, expanded access to treatments for young patients who have run out of options.
3) Student Loan Deferment for Active Cancer Treatment
According to Mark Kantrowitz, "Federal Direct student loan borrowers who are undergoing active treatment for cancer may defer repaying their Federal Direct student loans for the duration of treatment and for 6 months afterward.
Nothing we do will bring back our daughter, but we take great comfort in knowing that we are moving forward with many other families across the United States to make childhood cancer a national priority. It's important for us to continue our efforts to honor Kelsey and at the same time help the next generation.
* All black and white photos were taken by Family Images for Lasting Memories
** While sending college care packages is a wonderful thing to do, you can also help our cause by donating to one of our many partners directly. Every little bit helps so much to increase treatment options and uncover new science about sarcomas. (DONATE here)