Childhood cancer--a grandmother's guest blog

I first met Carol, her sisters and mother (a Methodist pastor), all bloggers, years ago but only on-line.  Then everything changed for her, including her blog.  Her seven year old granddaughter Lily was diagnosed in 2008 with cancer, and the battle continues after a heartbreaking relapse in 2016.

        *                           *                           *                          *

Today is September 1st - the first day of Childhood Cancer Awareness Month, and I want to honor my #1 childhood cancer warrior, my smart, brave and beautiful granddaughter, Lily. Lily was first diagnosed with Acute Lymphoblastic Leukemia (ALL) on December 1, 2008 at the age of 7. When she was diagnosed, I wondered how we’d make it through the 2+ years of treatment. It was a hard journey with daily chemo, fevers, hospitalizations, missed school, and missed childhood experiences. However, she made it through and finished treatment in February of 2011. She had a skating party to celebrate. She then had over five years of building back her health.

She went from being behind her peers academically (missing a year and a half of school will do that!) to beginning her sophomore year of high school in 2016 in advanced classes and being an active member of the high school girls’ volleyball team. Then in September 2016, she started feeling unusually tired again, and she had unexplained back pain – back pain that was all too familiar to her. She tells me that she suspected what was wrong well before it was confirmed. Blood tests were done again, and we got the heartbreaking news that she had relapsed. There was less than half of one percent chance of relapse that many years off treatment, and yet it happened. Learning your child or grandchild has cancer is horrible! Learning they’ve relapsed is so much worse!

Larisa – Lily’s mom and my daughter – tells about receiving that phone call confirming the relapse. She had to tell Lily and her younger sister, Sophie. When she went into Lily’s room, Lily said, “It’s back, isn’t it?” Larisa confirmed that it was. Then she, Lily and Sophie hugged each other and sobbed together. They KNEW how bad the treatment had been the first time, and they knew that treatment for relapse would be so much worse. The odds of cure go significantly down with a relapse as well.
Any of us adults in the family would have swapped places with Lily in a heartbeat if we only could have. I begged God to let it be me instead of her. Unfortunately, that’s not how it works. Our only choice was/is to be there for her as much as possible as she travels this terribly rough road.

Lily’s relapse was diagnosed on a Friday, but her oncologist wanted to wait until Monday to start treatment. That meant we had a weekend. A weekend during which Lily had her hair highlighted because she wanted it to look pretty before she lost it. A weekend to be with her friends and family. I asked if Lily wanted a family dinner during the weekend. Lily said yes – as long as we were upbeat and didn’t talk about the relapse. She didn’t want everyone being sad or feeling sorry for her. So we invited the whole family over to our house for dinner that Sunday night. Lily chose the menu, and I bought a bunch of small pumpkins – thinking that decorating them and making jack-o-lanterns would be a fun activity for all the children. After dinner, we took the pumpkins to the front porch, and the children started drawing and carving faces.

Then Sophie asked if it would be okay is she smashed her pumpkin on the concrete walkway. Smashing pumpkins? Well – sure! Go for it! Within a few minutes, all the children - preschool through teens - were standing on the steps and smashing the pumpkins on the walkway. Pumpkin pieces were flying everywhere. Lily mostly watched and shook her head at the silliness. We adults watched and laughed at how enthusiastically even the youngest kids were throwing the pumpkins, but we also understood what was going on. Fear, anger, and uncertainty were being expressed via smashing pumpkins. It was a needed release. When they finished, the kids picked up all the pumpkin bits, and we all went back inside. It is a scene etched indelibly in my memory. The next morning, Lily entered the hospital, had surgery to install a port and receive spinal chemo - and began treatment again.

With her relapse, Lily was faced with another two years of treatment. Right now, she’s about half-way through the relapse protocol. Lily’s body has not dealt well with the new, more aggressive relapse chemo. She lost her hair three weeks in, and she’s gone through some rough and life-threatening reactions to the chemo. One chemo she tolerated well back in 2009, put her in anaphylactic shock this time. So far during this relapse treatment, she has had just about every unusual and extreme reaction in the books – and some not in the books. She has been a frequent topic for discussion at the oncology team meetings at the children’s hospital.

She is participating in a clinical trial (research study) and was randomized to the experimental arm of treatment that includes a new immunotherapy drug, blimatumomab. This drug was not available back in 2008 when Lily was initially diagnosed. The study involves three cycles of 28 days each of continuous IV infusion of the drug. Lily has to wear a backpack that contains the pump that keeps the drug going into her body through her Hickman line 24/7 for those 28 days. Surprisingly, Lily has responded well to the blimatumomab and, so far, her months on it have been two of her less sick months of treatment. The third and final cycle of blimatumomab is the next block on her treatment protocol. She will then have surgery to remove her Hickman line and install a new port. Then she'll continue with the rest of treatment.

She missed most of this past year (her sophomore year) of high school, but kept up with her school work thanks to her school’s amazing teachers who went so far beyond the call of duty to help her. And thanks, also, to the school district’s home-bound program (Thanks, Jojo!). She also took some classes online. She’s now into her junior year of high school and hopes to be able to attend more regularly, but that depends on how she does with the upcoming chemo.

When Lily was in the hospital during the early days of treatment in 2008, she told Larisa that she wanted to do something so other children wouldn’t have to go through such rough treatment. Out of that conversation, the Lily’s Garden Foundation at Vandy’s Children’s Hospital was begun. Lily’s goal was to help raise a million dollars for childhood cancer research. She reached that goal several years ago! Amazing! Lily didn’t stop at a million dollars, though. She continues working to raise money for childhood cancer research. She has become a proficient speaker for childhood cancer research. And there is a lot of exciting research going on right now! I'm very optimistic that Lily's dream of no childhood cancer will someday be realized.

Meanwhile, she still has another rough year of treatment ahead of her. She will finish treatment in September 2018. Incredibly, she will be a senior in high school then. Please continue to keep her in your prayers. She needs every one of them.

Lily was asked, "What can others do that would be helpful?" Her response: "Help bring awareness, and help raise money to find a cure." You can help Lily reach her goal of finding a cure; find out how by looking at her website: http://lilysgarden.org.

God bless you, Lily. You were dealt a rotten hand at age 7 and again at age 15 – and yet you handle it so well. I can't wait for our Northern Lights adventure as soon as you're finished with treatment and can travel again. You are my hero, and I love you to the moon and back!