At the beginning of the summer, West Savali, 37, and her husband, Savali Savali, 40, urgently uprooted their family of five (six, counting the dog, Sir Walter) and moved from Natchez, Miss., to Houston after Savali Savali was diagnosed with stage 4 lung cancer. This was after months of misdiagnoses and doctors not prioritizing his care. In Houston, the Savalis struggled to find a home, so they lived in a hotel room for more than a month before finally renting a home in Katy, Texas, about three weeks ago.
The boys were registered for school; Savali’s chemotherapy treatments continued; and a new normal slowly began to settle over the close-knit family. Then Hurricane Harvey struck land.
The Savali family were immediately thrown off an already shaky precipice and into an abyss during one of their fiercest battles. Yet, emerging from the eye of the storm, Kirsten, who recounts her story below, miraculously remains full of grace and gratitude, humor (the African-American balm of all things tragic) and determination, a true example of love in action.
In about October or November of last year, Savali began coughing. His dermatologist told us this was a side effect of Humira, a medication to treat his psoriasis. The Humira representative I called told me the same thing. Both reassured us that it would go away.
It never did.
Over the course of the following months, he became fatigued; he was coughing up blood and experiencing sporadic pain on his left side. The doctor visits continued. Asthma and tuberculosis (another health risk associated with Humira) were both ruled out. During this period of anxiety and gnawing fear, Savali was misdiagnosed by different doctors with pneumonia and then bronchitis, given antibiotics and sent home.
Because I got my medical license from Google University, I began researching hemoptysis and learned that it can be a red flag for lung cancer. I called the pulmonary specialist who had seen Savali previously and asked him, “Hey, is there any way this could be cancer?”
He responded dismissively that it was not cancer because there wasn’t enough blood. Over and over again I was told, “He’s too young; it’s probably a bad infection.”
It was like screaming into the wind. I know my husband. I knew something was wrong in my gut. There was only one doctor, Dr. Barbara Smith, an African American, who took our concerns seriously. I’m so grateful for her.
We got the diagnosis on June 14. By this time, Savali was having a hard time breathing but was still coaching our middle son’s baseball team. When the weight of the diagnosis hit him, the first thing he said to me was, “Thank you for allowing me to be the father I always wanted to be.”
Because I knew in my heart that cancer was the most likely diagnosis, I had already researched cancer centers; MD Anderson in Houston was at the top of that list. With the help of a YouCaring fund organized by a dear friend, Tayari Jones, and the help of my chosen family (the list is too long, but I am thankful every day for them), we were able to move immediately. That maxim “We all we got”? My people live it. They are love in action.
At MD Anderson, they told us that based on the tests done in Mississippi, it looked like stage 3 lung cancer. We cried but said, “OK, this is a little deeper than we thought. We can beat it; at least it’s not stage 4.”
When we came back, they said it was stage 4 and that it had metastasized—and that the survival rates are about 10 percent. Savali’s primary oncologist said the median range that chemotherapy is effective at this stage is eight to 16 months before we will have to look at other treatments.
Savali’s diagnosis became our lives, while we also struggled to keep everything as stable as possible for our boys. We overhauled his diet amid getting the boys registered for school. We read up on chemotherapy side effects while sleeping on air mattresses because we couldn’t get our furniture from Mississippi. We clung to each other in fear, but also with hope and determination.
Then the rain started.
Harvey made landfall Friday night as I waited for our new beds to be delivered. Our thinking was that if we were going to be trapped in this thing, we would at least have beds. Authorities were telling us it wouldn’t be that bad because our area wasn’t prone to flooding. They said to just stock up on food and water in case the power went out. On Sunday night, it stormed and tornadoes dropped down in the area.
On Monday morning I went outside, and water was up to the wheel of my car. By this time, reports were conflicting. Warnings to stay in our homes for safety were heard right along with warnings that the Army Corps of Engineers would be releasing water from the Addicks and Barker reservoirs and that those in communities nearby should consider evacuation.
By this time, it was too late to leave, and we began to worry about not having enough food. We had already missed an important doctor’s appointment because Harvey forced MD Anderson (which eventually flooded) to close. As we tried to figure out what to do, one eye was trained on our street and yard, which were filling up with water as swiftly as a bathtub. Someone pounded on our front door. It was a man with an inner tube, who asked, “Do you want to get out of here?”
We said yes, and he told us to get ready for the boat to leave in five minutes. I grabbed everything that I could and yelled for the boys to throw on clothes. We threw things we might need haphazardly in bags and hurried to the door. By this point the water was waist-deep.
I carried the baby, my 12-year-old pushed his little brother in the inner tube, and Savali carried our dog. We made it to a neighbor’s house a few streets away, and they graciously allowed my soaking-wet family to sit inside their home until the boats came back for us.
After about 30 minutes, we learned that the boats were not coming back, so we had to go back into the water and walk out of the neighborhood to safety.
By this time, I realized that there was a possibility that we would be gone a long, long time, and we didn’t have much of anything. So I walked back to our house; the water was chest-deep in some areas. A neighbor turned off our power for me and left. I stuffed a suitcase full of clothes and documents and wrapped plastic around the suitcase.
As I struggled to make it back to my family, the suitcase lifted as high as I could hold it above the water and the rain burning my eyes, a young Latina girl and her grandmother crossed the street from their house, got in the water and grabbed the suitcase from me. At the same time, Savali was walking toward me with an air mattress. Despite being fatigued and coughing, he said he couldn’t let me do this alone.
When we realized the boats weren’t coming back, the neighbor grabbed an air mattress and he said, “I’ll push you all up there.” So that’s how Dash and Reid and Sir Walter got on the air mattress, and we walked the rest of the way. Then another boat came by with limited space, and I told Savali to take it because he needed to get out of the water.
Once we all made it to dry land, there were people waiting to take us to the shelter. We went to the first shelter and it was full, but a woman there said that her son could drive us to another one. I wish I had thought to get their names.
It was just one of those things where all hands were on deck, and it was beautiful. It was absolutely beautiful, despite the disaster around us. But maybe that’s when beauty shines the most.
There were about 1,000 people at the shelter when we arrived. Mostly families. There was food; there were towels. We were in the high school, so we were in this cafeteria area. And each aisle had blankets and sheets and pillows and, if you were lucky, an air mattress. But more of those ended up coming in. People who had pets, on one side; the ones who didn’t, on the other. And, of course, because we had Sir Walter, we were on the side with all the pets. There was so much barking that it was like The Secret Life of Pets in there. The volunteers were really, really helpful. They had counselors there committed to giving everyone the support they needed.
Still, the way my brain works, I noticed the disparities. How many people didn’t have access to that kind of shelter. I mean, a shelter’s a shelter. There’s not a Yelp review for shelters, but I was just thinking that there were so many resources there. How else could this be spread out to other people? … I never once felt unsafe, which was my main concern with the boys in general.
The two most urgent things for me concerned Reid, who is on the autism spectrum, running off and my not being able to find him. And, also, Savali, after being in water waist-deep and rain pouring on him with nothing on his head, then coming into a situation where there were so many people. Those were the two most urgent things. But I did not feel unsafe.
Through all of this, I was really, really worrying about the boys. They’ve had to move pretty frequently. We moved to Mississippi from Los Angeles because my father died. And then we had to move from Mississippi to Texas really suddenly because their father has cancer. And we finally get into this house. He finally gets treatment. We finally get them into school, and then the hurricane comes. …
The oldest, he’s not doing a lot of talking; he’s sleeping through it a lot. He wakes up, looks around, says, “This is still happening,” and goes back to sleep. Our middle son is a social butterfly; he didn’t want to leave the shelter because his new friends were there. For the baby, when the rain first started, it was exciting for him, but now he’s on sensory overload. He needs to run around; there’s a lot of screaming. Running away. At the shelter, they got to know him: Toddler, gray shirt, pull-up? He went that way. There he is! They got to know his name and they would stop him for me.
By day 2, we couldn’t get out. We didn’t know what to do. Both the boys’ schools were flooded. No car. Nobody can get to us. Get in. That’s when I got the call from Univision, The Root’s parent company, saying that they didn’t know I was here, and what could they do to help. Would a hotel be good? And we said, “We can’t get to you.” They responded by asking, “If we could get somebody to get to you, could you get to the hotel?” Someone who worked at Univision Radio came to get us. They gave us books for Reid and clothes for Dash and Walker.
We were evacuated to the shelter Monday afternoon. I don’t even know what today is. We left our home Monday afternoon around 1, maybe closer to 12. So, being in this hotel now, this is the first time we’ve been able to breathe since this all happened. Just being able to shower. And lie down in the bed. And have food. There was food at the shelter, but actually worrying about how much would be left? What was Reid going to eat? Do we still have a home? Do we still have a car? It remained, and remains, a stressful and uncertain situation. At least we’re here now, though. And it’s been such a big, big relief, even with the battles ahead of us.
Sometimes you just need that reminder that no matter how bad it is, something else could always happen. Gratitude. It sounds cliché until you actually go through it. Through all of this, I keep thinking there was a time we had to take the boys to a doctor at a free clinic in East Los Angeles because we didn’t have insurance. Any kind of coverage. There’s also a feeling of that, as much as I’m going through, I have a community that has rallied around me. My family is still intact. My health is relatively still intact.
There are still people who have it so much worse. And what happens to those people who don’t have people who can make a phone call for them? They don’t have people who can reach out and say, “I got you.” They don’t have doctors who care. If I had not pushed and pushed and pushed, I don’t know where my husband would be. All of this is just how fucked up the health care system is in general. And how poverty is a death sentence. Lack of education shouldn’t be a death sentence. What you have access to shouldn’t be a death sentence.
I cope by making sure everyone else is OK. That’s my main concern. Making sure that Savali is being taken care of. That Reid is getting the attention he needs, and that Walker and Dash aren’t being ignored or neglected in the midst of it all. It’s a lot, the pressure I put on myself to make sure everyone and everything is OK: Savali’s fine. Let me check on Reid. OK, Reid is fine. Let me check on Dash. Let me check on Walker. Let me see what the hell Donald Trump is up to right now. Let me see what’s going on with the news because this is my job.
Seriously, how can I care? ... How can I care about what’s going on in the world when my world, my life, is inside my home and I don’t know how it’s going to change from day to day? They have to be OK. Whatever we have to do. If we have to move to Australia for Savali’s treatment, he’s going to be OK. I don’t know how we’re gonna get there, but we will. If we have to get to Cuba, whatever it is, he’s going to be OK. I don’t care about the prognosis.
That is what drives me every day, my family. When I see Dash smiling and laughing. And Walker is asking about little things like, “Hey, can I get the new Madden?” And Reid’s playing with a train set. And Savali is lying down and he’s happy and he’s comfortable. And he’s here. And I can feel him and I can touch him and he’s breathing. We’re breathing. I want that every day.
Editor’s note: Since this interview, Savali Savali has been able to reschedule his appointment at MD Anderson to get the results of his aggressive chemotherapy treatment. If you’d like to donate to the family’s YouCaring fund, please go to this page.
If you’d like to donate to Hurricane Harvey relief efforts in general, please visit the following organizations’ pages:
Black America Web Relief Fund
Amazon Wish List
Trans Foundation of America—Houston