Lucy's Story
2014
Lucy was diagnosed with cancer on December 24, 2014, a few weeks after her third birthday.
She’d been sick off and on for a few months, but she was a toddler in preschool – preschool kids always seem to be sick. We all just expected she’d get better, hopefully in time for the holidays.
What none of us expected was to get a call at 11 PM on Christmas Eve from a blood pathologist who said to bring Lucy to Seattle Children’s Hospital right away – she had leukemia and they wanted to start as soon as possible. That started a journey of hope, despair, and resolve that would last five and a half years.
2015
Lucy’s first transplant took place in May 2015.
She was three and a half. Preparing for the transplant meant destroying the existing cancer cells, and that meant chemotherapy. That’s a word we hear a lot, but not one most people really understand. Chemotherapy is designed to destroy cancer cells, but it doesn’t discriminate – it also destroys the rest of the immune system, meaning germs are a huge concern. Her bedding and clothing had to be washed and bleached every day, and – because chemo is so toxic – daily baths were also a necessity. In addition, radiation – also very hard on the body – was used to ensure all the cancer was gone before the procedure.
That's a word that we hear a lot, but not one most people understand. Chemotherapy is designed to destroy cancer cells, but it doesn't discriminate — it also destroys the rest of the immune system.
2016
The transplant used stem cells from her father, which were – luckily – a match. And, at first, it seemed to work ... until it didn't.
In January 2016, Lucy had her first relapse. That meant more time in the hospital, more chemo, and more medication to manage the pain and bring the cancer back under control. At this point, the team at Seattle Children’s recommended T-Cell Therapy to try to put the cancer back in remission.
The science of this process is truly amazing. Cells were extracted from Lucy’s body and sent to a lab to be transformed into super-soldiers designed to fight back against her cancer. In May 2016, these cells were transfused back into her body. These super T-Cells quickly attached to the cancer cells and destroyed them. The hope was that they would stay in her body to fight off any new cancer cells, but that didn’t happen – they only stayed active for about six weeks, then disappeared.
At that point, we got more bad news. Not only had it not worked, but her bloodwork now showed signs of Acute Myeloid Leukemia (AML), a much more difficult leukemia to cure. She needed another transplant, and she needed it fast. So just one month later, in July 2016, Lucy received her second transplant, this time with donated cord blood. Again, this meant more hospital time, more chemotherapy, and more radiation – which can have severe side-effects, including causing secondary cancers later on in life – to prepare for the procedure.
2017
Once again, the transplant worked … until it didn’t.
For a year, everything seemed great, but then we got bad news: a follow-up bone marrow test revealed the cancer had returned. But the oncology team had a plan: they wanted to keep her counts low until a new T-Cell trial received final approval from the FDA. To get ready, Lucy took daily oral chemo and underwent both biweekly chemo infusions and monthly steroid pulses to keep the cancer in check
During this time, Lucy attended and graduated from kindergarten. Having a normal life was very important to her. Despite her chemo, Lucy also started first grade. If she wasn’t in the hospital or ill, she went to school. She just wanted to be a kid like everyone else.
This meant more hospital time, more chemotherapy, and more radiation – which can have severe side-effects, including causing secondary cancers later on in life – to prepare for the procedure.
2019
In October 2018 the new T-Cell trial was approved, and her infusion – a tiny vial of blood filled with cancer-fighting cells – took place in January 2019.
Within 10 days of infusion, Lucy was declared cancer-free by Seattle Children’s. We were thrilled. But, again, it didn’t last.
In June, Lucy’s mom received the dreaded phone call at work: Lucy had relapsed again. The cancer was back. There weren’t a lot of options left. They could try a third transplant, but that was dangerous. They could also try high-dose chemo, which was very hard on the body – especially for children – but was the one thing they hadn’t tried yet.
They chose the latter. Lucy spent 23 days in the hospital in July getting – then recovering – from chemo. Days were spent hoping her blood counts would be high enough so she could go home and enjoy the summer. She was also inpatient for part of September and October, meaning she couldn’t go to second grade. When she was released, her cancer load was only 1:1,000,000 or 1%. The team was hopeful that the final round of high-dose chemo would get her cancer load to zero.
In November and December 2019, Lucy was inpatient again for her final round of chemo. She spent her 8th birthday in the hospital. But, on December 23, Lucy was released – just in time for Christmas. Celebrating together was something we knew we couldn’t take for granted.
On December 30, 2019, Lucy went in for a bone marrow aspiration to see if the treatment had worked. The next day, mom got the call, again: Lucy had relapsed. This time, there was nothing left to do – there were no more treatments available.
2020
In January 2020, Lucy was moved to palliative care.
The team was trying to slow down her cancer growth and maintain her quality of life to the best of their ability. We spent as much time with her as we could. In late May, after a weekend getaway with the extended family, Lucy told her mother she didn’t want any more transfusions. She was done with them.
On June 8, 2020, Lucy died. She was a heroic, brave, and amazing little girl who ran out of treatment options before she ran out of fight. Please help us continue her fight so more families don’t lose their children. Together, we can help end pediatric cancer.
The Lucy Strong Foundation
a registered 501(c)(3) non-profit organization
© 2023 The Lucy Strong Foundation
