The Color Gold: The Impact of Childhood Cancer
Everything seemed normal...
She ran, laughed, and played just as she always had. Nothing seemed unusual.
And it didn't seem like anything could go wrong.
Then, one weekend in January, our daughter, Elysia, was invited to attend a birthday party at Skate City. Wobbling unsteadily on her skates, she had fallen many times, catching herself on her hands and knees. Still, the difficulty of maintaining balance did not stop her from dancing to the music and skating around the rink. Everything seemed normal.
But the next day, she awoke to severe pain in her shoulder; it was visibly swollen and she struggled to lift her arm. I realized that about a week earlier, she had mentioned pain there before after she had jumped off her bed - but it was mild then and had stopped within a day, and so I thought it was just from the landing. Now that the pain had returned and it was much more severe, I was concerned she may have injured herself at the skating rink or had worsened an injury she may have already had. That morning, we made an emergency appointment to see her doctor.
Everything was about to change.
Her doctor gently examined her shoulder and said that it could be a sprain or minor fracture, and so he proceeded to order an x-ray. Afterwards, she said she was feeling much better, and with a bright smile, she asked to go to school. I didn't let her see that I was worried, and I didn't want her to suspect anything, so I dropped her off.
It seems so strange to me now remembering that my concern was more focused on the possibility of a fracture. I had no idea that it would be so much worse.
Her doctor called me within an hour of the x-ray...
I still remember that call, and I still remember the feeling of dread that smothered me and stole my breath when he told me what the x-ray revealed. I remember the great care he took in telling me, speaking softly and slowly to explain that they had found a mass. I could barely respond - I'm sure he knew I couldn't - and so he continued to speak, explaining that the very best will care for her. That there were sarcoma experts in Denver.
I heard everything clearly, but I wasn't really there; I couldn't breathe. I couldn't stand. I felt so powerless. So weak. I should be able to protect her.
And I still had to pass the news on to her father.
He was at work; I told him to come home immediately because I couldn't say it on the phone. I could hardly speak clearly.
(to view video, use chrome or edge)
The x-ray revealed a fuzzy image of a large mass. But despite its distorted appearance, it was clear that there was a large mass in her posterior, left chest cavity. It was growing in the soft tissue of her third rib. That rib had lytic destruction, making it appear moth eaten, and there was also a periosteal reaction. Additionally, the second and forth rib also had lytic destruction...the mass was eating at them too.
Lytic Lesion - Destruction of an area of bone due to a disease process, such as cancer (1).
Periosteal Reaction - radiographically detectable new subperiosteal bone formed as a reaction to soft tissue or osseous disease (2).
(to view video, use chrome or edge)
Elysia went in for an MRI the Monday following the x-ray. She expressed being scared of going to sleep for the test, but her anesthesiologist quickly helped her find calm in a playful set up.
While she lay on the table for the MRI, he asked, “What do you think we need? How about this?” and then proceeded to collect random items in the room and pile them on top of her.
She laughed at his goofy suggestions and exclaimed while giggling, “We don’t need that!”
She fell asleep with a smile...
We were distraught to hear that the MRI further confirmed the existence of the mass. There was no mistake, and so they needed to perform further tests. But because they were suspicious that she had a type of bone cancer, we had to move fast.
We never kept anything from her: She knew she had a mass. She knew it could be cancer. But, she approached everything with the nurtured curiosity of a scientific mind. She wanted to see everything and always requested to see scans.
(to view video, use chrome or edge)
On January 24th, two days after her MRI, Elysia went back for a bone biopsy. While she lay sleeping on the operation table, her oncologist team tested the biopsy sample for blue cell; they confirmed malignancy and immediately prepared to insert a port. It was Ewing's Sarcoma, a highly aggressive bone cancer, and she would need to begin treatment as soon as possible.
Her port would provide easy access for the various chemo medications she'd need to battle Ewing's Sarcoma. With a therapy that required 14 weeks of chemo and 30 days of radiation, she was in for a long fight.
Every other week, she'd begin one of two different rounds of chemo therapy: for two days, doxorubicin and vincristine; for five days, ifosfamide and etoposide. At the end of each day for her two day treatment, she'd go home attached to a pump with post hydration and a medication called mesna. Additionally, after every round of chemo she needed an injection for white-blood cell stimulation called neulasta, an expensive, life-saving medicine for cancer patients.
Surgery to remove it was not an option; because of where the tumor was growing, accessing it could be fatal, and even if they could successfully remove it, the operation would have risked her left arm.
Ewing's Sarcoma is an extremely rare cancer of the bone and soft tissue, and it primarily occurs in adolescents (3). It responds well to chemotherapy, but treatment relies on a multidisciplinary approach to control the site and metastatic disease (3). Therapy typically consists of both chemotherapy and radiation and/or surgery (3). When localized, Ewing's Sarcoma has an overall survival rate of 65% - 75%. But patients with metastasis have less than a 30% 5 year survival (3). Should the cancer return, prognosis is dismal (3).
A Day in the Life
The highly intense regime her body was experiencing made her more susceptible to neutropenic fevers; it was not uncommon for her white-blood cells to deplete to extremely low levels. It was with these fevers that the three of us remained at the hospital for long periods of time - our longest stay being 18 days. She'd be quarantined to a room and had needed frequent rounds of antibiotics to fight any infections that could be causing her fever. When her numbers were especially low, she would receive transfusions of blood and platelets.
The hospital calls quarantining being "on droplet". It's a precaution to prevent the spread of illnesses to other susceptible patients, and considering we were on the pediatric cancer floor, there were many other vulnerable children.
Being that Elysia was a child battling an illness that destroys the immune system, we had to halt visits during flu season. If someone so much as sneezed or had an itchy throat, we told them they couldn't visit. We also soon discovered that we knew many people who chose not to vaccinate their children, and so we had to stop contact with them. Eventually, her long visits at the hospital and her vulnerability made attending school difficult - it was no longer a priority.
During that year, my husband and I walked the halls of both the Children's Hospital and the Cancer and Blood Disorders Clinic with one thing on our minds: Hope. Desperate hope. Parents of other children admitted to those halls also walked with the same, worn stride, and they passed on haphazard smiles that whispered "we're all in this together". They too had warriors fighting a relentless monster. And all of us had a common fear lingering in the shadows of our thoughts.
(to view video, use chrome or edge)
Keeping a few luggage bags and back packs near the door became a regular thought after each cycle of chemo. Her father and I made sure she'd have plenty to do should the hospital have to place her on droplet precautions. Thankfully, a group with the hospital called "Child Life" provided plenty of voluntary services and donated items to entertain her.
Elysia found solace in crafts and games during our stays.
In this photo, Elysia and I were making paper flowers using craft items given to us by Child Life. This photo is from one of our longest stays, and it was her longest time on droplet. In the corner, behind the chair and her IV pole, is a red wagon holding our luggage bags. Against the window is the cot and multiple pillows where her father and I often sat, and where we always slept. Even though the Ronald McDonald Foundation offers lodging in a nearby building, we couldn't bear to leave her for even one night. It didn't matter to us that the cot barely fit both of us.
Crafting became her primary way to pass time as well as a new favorite hobby.
This was also the first stay after she had started radiation and it was during this stay that she had received a feeding tube - she had stopped eating due to painful throat sores and had lost a significant amount of weight. Sometimes, we could get her to suck down a packet of mayo - it was the only thing that tasted good to her at the time.
One night, her throat sores were so terribly painful that she couldn't even eat from a mayo packet. With a growling tummy, Elysia sobbed that she couldn't eat and that even the softest of hospital foods were not soft enough to pass the sores without causing shooting pains. Her daddy rushed out of the hospital with an idea and returned with cotton candy. He saved the day.
During radiation, and while her sores ailed her, cotton candy was a frequent meal. In fact, chemo medication affects taste buds, causing even the most flavorful of meals to taste bland or bitter. Her most favorite of foods tasted awful. But foods like candy were sweet enough to maintain some semblance of taste, and so Elysia was prone to preferring junk for most of her treatment.
It was better than watching her eat nothing.
The hospital began to feel more like home than our actual home.
I remember returning home after a long and scary stay at the hospital, sitting on my bed with Jeff, and looking at him as we both shared the same feeling: it didn't feel like home. We were so accustomed to being at the hospital that it began to feel normal. We slept better on the uncomfortable cot than we did on our own bed. Perhaps it was because we could always count on a nurse or technician to sneak in during the middle of the night to check her vitals, whereas at home, we were all alone. Still, to this day, we feel like we're coming home when we enter the hospital. We were experiencing the symptoms of post-traumatic stress disorder. In fact, research has found that parents of children battling life-threatening illnesses are highly susceptible to developing PTSD (4). Every time she mentions any pain or discomfort, we begin feeling a sense of dread and fear even when we know she is okay.
Claiming that cancer treatment is expensive is an understatement. For example, neulasta - that white-blood cell stimulating shot she needed after every chemo cycle - runs at an average of $8,303 per injection. The first time we walked into our local Walgreens to pick it up, we were told our insurance only covered it enough to lower the price to $7,000. This number is nothing compared to the cost of the chemo drugs and frequent hospital stays. A social worker at the clinic that oversaw her treatment helped us attain a waiver with Medicaid that would assist us in paying for what our insurance didn't. Additionally, because we were often out of work, several charities and fundraisers came to our aid:
Rocky Mountain Childhood Cancer Foundation
Zac's Legacy Childhood Cancer Fund
Rampart Range - Bald for Bucks
Make - a - Wish Colorado
Elysia received many care packages from friends, family, and awesome groups. A freelance actor with The Screen Actor's Guild visited her often as Spiderman (her favorite hero).
She still says that Spiderman is her best friend.
The Palmer Ridge Bears, an all-girls softball team, started an annual awareness movement in September of 2018. Elysia only had one more chemo cycle left, and to celebrate, they invited her to throw the first pitch for Gold Month. She made close friends with the team, and they visited her for the last few times she was in the hospital during treatment.
Elysia had a large support system behind her; many people - family, friends, and even strangers - joined her Facebook page, Elysia Warrior Girl, to follow her journey. We called them her army, and their support meant the world to us.
Even though the page isn't very active today, thankfully because she is doing so well, we know the army is still there to back her.
The Make - a - Wish team in Colorado granted her wish to go to Disney World. The trip had to wait until she finished chemo because of her fragile immune system. But the moment her counts went up after her last cycle, the trip was set. This experience was truly magical and helped us all forget, even if only a few days, a whole year of intense treatments. Disney World capped off a year of pain and fear resulting in an overwhelming high that we will possibly never experience again.
For Elysia's father and I, it was still bitter sweet; we still didn't know the results of her treatment and even though we had a blast, there was a cloud looming over head.
We were scared of what we'd find coming home.
We returned home to great news: the treatment was a success. Her tumor responded well to the therapy and she could move into maintenance. Though we were grateful to escape chemotherapy, life would never be the same again.
On September 20th, a year after she completed chemotherapy, Elysia's father posted:
"September is "Gold Month". As in "Go gold for childhood cancer awareness." One year ago, almost to the day, my warrior girl finished her last round of chemotherapy and Ren Behan and I started trying to figure out what "normal" was supposed to mean going forward. A year later, "normal" means going to the hospital still feels more like "coming home" than sleeping in my own bed. "Normal" means brutally frank conversations with an eight year old about all manner of difficult and painful topics. "Normal" means knowing that a commercial for Walt Disney World is one of the less predictable triggers that will leave me sobbing. And "normal" means being hypersensitive to anything out of the ordinary. So when Elysia started complaining about intermittent hip pain, we took notice. And when she was still complaining about it after almost a month, we took her to have it x-rayed. The x-ray came back clear, but we still took her to see the orthopedic surgeon, who ordered an MRI that we went in for yesterday. The MRI came back clear as well, so we can breathe again. It was a false alarm - she's okay - but this is our new "normal". This is what "Gold Month" means to me."
That year brought an awareness we never had before: we notice when people have hospital bands around their wrists at the grocery store, we notice everyone wearing a scarf or beanie on what appears to be a bald head, and we are especially aware of the color gold.
No one should only become aware of cancer when it impacts their lives - there are so many fighting this battle, and the least we can do is notice them.
Warriors - all of them.
(to view video, use chrome or edge)
Today, Elysia is on a maintenance period that will last another four years before she'll be considered in remission. She will not be declared cancer free until she is 17 years old. Her hair is growing back and her crazy energy is returning. And though her immune system is still recovering, she plays just as hard as she ever did before.
Sources and References
(1) NCI. “Definition of Lytic Lesion”. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/lytic-lesion. Accessed December 1st, 2019.
(2) Farlex. “Definition of Periosteal Reaction”. https://medical-dictionary.thefreedictionary.com/periosteal+reaction. Accessed December 1st, 2019.
(3) Gaspar, Nathalie, et al. “Ewing’s Sarcoma: Current Management and Future Approaches Through Collaboration”. American Society of Clinical Oncology, 2015. Retrieved at pdfs.semanticscholar.org/1202/95f086ec3b84f5bcfccb289138c4e8a5e16b.pdf. Accessed October 29, 2019.
(4) UWHealth. “Post-traumatic Stress Disorder in Parents of Children with Cancer”. UWHealth, 2019. Retrieved at https://www.uwhealth.org/news/post-traumatic-stress-disorder-in-parents-of-children-with-cancer/12374. Accessed November 30th, 2019.
Bedetti, B., Wiebe, K., Ranft, A. et al. Ann Surg Oncol (2015) 22: 2853. Retrieved at rdcu.be/bWjEk. Accessed October 29, 2019.
CHOP. “Facts About Childhood Cancer Infographic”. Children’s Hospital of Philadelphia, 2015. Retrieved at www.chop.edu/childhood-cancer-awareness-month/facts-about-childhood-cancer-infographic. Accessed October 29, 2019.
The Truth 365. “Cancer Fact Library”. TheTruth365.org, 2014. Retrieved at www.thetruth365.org/cancer-facts/. Accessed October 29, 2019.