As Covid cases climb across the nation and throughout the globe, my heart and my mind stay focused on those for whom this pandemic has taken a different kind of toll.
For most of us, 2020 has been a year of frustration, fear, and fatigue— frustration with the way things have been in the past, fear for the way things could be in the future, and fatigue with the way things are right now. And for forty-six families every single day in the US, those feelings skyrocket as their world is rocked by a childhood cancer diagnosis.
On March 5th of this year, Ruddy Hope’s family was one of the forty-six.
In July, Sydney and I got the chance to sit down with the Hopes and hear about their story.
I’m in awe of Ruddy’s resilience and energy as I sit with his family and they recount the insanity they’ve experienced over the last few months. Joseph is urging his son to eat his macaroni and cheese while Ruddy insists on running around and shooting spider webs from his wrists. Ryanne is dividing her attention between Lion King, which is playing on the TV, and her parents, who are sharing the story of her brother’s cancer diagnosis with Sydney and me. Elizabeth is reveling in the moment of togetherness with her family, her words dripping with gratitude and steeped in hope. Ruddy’s grandmother, Gigi, is making sure everyone’s glass is topped off and no one is going hungry.
Elizabeth tells us that after months of unexplained fevers, infections, pain, exhaustion, many doctor visits, and inconclusive tests, Ruddy woke up screaming in pain and crying for “Mama” late one night, just hours after his last visit to the pediatrician. She and Joseph took him to the Emergency Department at Children’s of Alabama immediately. By this point, they’d grown accustomed to CT scans, blood work, antibiotics, and administering fluids to their almost two-year-old son. They had heard the words “I don’t know” from their doctors far more often than they’d received answers, and they were wholly unprepared for the terrifying news that was on its way.
“It happened so fast,” Elizabeth tells us as Ryanne delivers me a kiddie-size bowl of pretzels. “At 4:30 that day, Ruddy had no blasts in his blood. By 7 am the next morning, he had 18% blasts, and we had a diagnosis of leukemia.”
If you’re not familiar with leukemia, blasts are cancer cells found in the blood. For Ruddy’s blood to have gone from 0% to 18% blasts in 24 hours is very scary. He was obviously progressing very quickly. Just a month before his second birthday, Ruddy’s future suddenly felt very distant and painfully fragile.
All of a sudden, Ruddy lightens the mood of the room by bringing his milk cup to Joseph and shouting, “cheers, Daddy!”
We all burst into laughter and “cheers” with Ruddy one at a time.
“You would never know he has cancer,” Elizabeth says, “except for his cute little bald head.”
And she’s right. He may be more familiar with his hospital pole than his tricycle, but when Ruddy blasts off “to infinity and beyond,” he is as normal as any two-year old on the planet. At least for that moment.
Everyone in the family shares a little of their experience with us, telling us how their perspective has changed over the course of the year and what it’s like to walk through childhood cancer with a two-year old. And while the grownups certainly have great things to say, what sticks out most in my mind is Ryanne’s experience— Ruddy’s sister.
Ryanne understands that Ruddy has to go to the hospital to get better, but she’s never been there. Because of COVID restrictions designed to keep Ruddy safe, Ryanne has never seen Ruddy’s hospital room. She’s never met any of his nurses. She’s never watched Ruddy get his chemo. Her brother repeatedly leaves for weeks at a time to visit a place she’s only imagined to have treatments she doesn’t understand.
So for this strong and courageous five-year-old, the idea of cancer is as obscure as the coronavirus. In fact, she sometimes gets mixed up and accidentally says Ruddy has “the virus.”
But when I ask her what she does while Ruddy is at the hospital, she answers without skipping a beat. “I wait and wait and wait for him to come back,” she tells me, “because I miss him.”
How many of us can relate to that feeling these days? We don’t know what’s going on. We don’t know why it’s happening. We don’t know when it will end, or what will come next. We are waiting and waiting and waiting because that’s all we can do.
I think back to March when COVID affected my life by forcing me to cancel some plans and wear a mask to the grocery store. I can’t help but think of what March was like for Ryanne — and the entire Hope family — as she sat at home, waiting and waiting and waiting for her brother to come back.
“It’s obviously hard on Ruddy physically,” Joseph says. “But emotionally, it’s taken a toll on everyone.”
Elizabeth and Joseph have developed a passion for childhood cancer research over the last few months.
“When I found out that only 4% of funding goes to childhood cancers, I was mad,” Elizabeth says. “Just 4%. And then I found out that there are only four FDA-approved drugs made for childhood cancer, and it lit a fire in me.”
Their passion has turned into action on more occasion than one, and they’ve already been a voice in their community advocating for more funding, more research, safer treatment options, and cures.
“Literally, you take this journey minute by minute,” Elizabeth says when Sydney asks if she has any advice for people who’ve just found out their child has cancer. “Your kids are a lot stronger than you think they are, and you are a lot stronger than you think you are.”
“And don’t get ahead of yourself,” Joseph chimes in. “As soon as you figure something out, it’s going to change. Don’t look to the past because all that’s over. Have hope for the future, and keep your eye on the prize, but don’t get too far ahead of yourself because things are definitely going to change.”
Gigi also reminds us that “it’s tough for everyone in their own ways. I’ve been here with Ryanne through all this, and the coronavirus makes it really hard for her. It really just sort of puts the icing on the cake.”
“Thank the Lord for Ruddy,” Elizabeth says with a giant exhale. “I do not know how people make it through this without finding God. My faith is so much stronger because of this. Before, I was such a worrier, but I’ve seen God answer my prayers through this. I have felt a peace that’s only possible through Him.”
Since the date of these photos and this interview, Ruddy’s story has taken all kinds of twists and turns. Seizures and scares, negative reactions and positive celebrations, hope for the future, fear for the unknown… But through it all, the Hope family has grown closer to one another and is stronger than ever before. Ruddy finished treatment for Acute Myeloid Leukemia on September 18, 2020 after six rounds of chemo therapy and months spent in the hospital. These days, he and his sister get to play together at home, eat dinner with Mom and Dad, and enjoy all the time they have together.
A lot has changed since that hot summer day in Alabama, but much is the same. We’re all still waiting and waiting and waiting. Some daughters are waiting for their fathers to recover from the coronavirus. Some grandmas are waiting to be able to visit their grandsons for the first time. Some sisters are waiting for their brothers to come home from the hospital where they’re receiving chemo. Some parents are waiting for a treatment to be developed that can cure their children. And devastatingly, some people will never receive the things they’re waiting for.
That’s hard. No way around it. So as we reflect on all we have and how thankful we are in this season, let’s remember those who are waiting.
Let’s enjoy the time we have with the ones we love most and wait with those who are uncertain about the future. Let’s celebrate with those whose waiting is over and mourn with those whose waiting may not end in joy and relief.
After all, today is all we have. So let’s wait today with grace.
Until there’s a cure,
Kayla
