On this very day last year, our lives changed forever with this photo. Looking back on the months following, I couldn’t see an ending in sight.
And then, On May 9, 2021, Sariyah completed all 11 courses of chemotherapy!
If you missed the story of her treatment, you can read more about it here. When I went with her on May 24th, 2021, they removed her port and did another EUA(Exam under anesthesia). We received the good news that she was considered stable with no evidence of disease. I asked if this meant that she was in remission, and her doctor informed me that they don’t use the word remission with solid tumors. I felt joy, but in the back of my mind, the fear lingered. More than anything, I wanted to know that we were in the clear for good.
She had photos done that day for St. Jude fundraisers, and if I didn’t know better, I’d say she was celebrating her victory too. I watched her personality light up that entire studio, and I’ve never felt more proud of my tiny warrior.
After the dust settled, I realized that I was in survival mode that entire time. I found myself reflecting over everything she had to endure, and it was as if I was looking back on someone else’s life. Those long grueling hours in the medicine room for five days. The chemo mixed with cryotherapy and laser therapy in her eye causing it to swell up so big it looked like it would burst. The pokes, prods, screams, and crippling anxiety.
It all replays in my head like a clip I just can’t skip.
I’ll never forget how she clenches my shoulders in the operating room while I whisper, “Mommy loves you,” until her body goes limp in my arms. Or the way I always look back through tears as the staff crowd around her on that table. I would walk into the waiting room filled with other retinoblastoma moms; sometimes, it would be empty. I occasionally ran into familiar faces. Some had the same continuous leg shaking as me or nervously twiddled their fingers.
We were all there in that waiting room, waiting for news, waiting for answers. I heard countless stories that will always stick with me, things that haunt me to this day. I’ve seen moms telling me how everything has been going well, only to hear their heart-shattering cries through the walls of the consult room next door.
We wait and make small talk, but we each are clinging to hope on an invisible thread forever binding us together. That waiting room changes you.
We did an end-of-chemo celebration for her even though I was still weighed down with fear. It was a day I wish I could replay forever. We had so many people in the community that made her day so special we even had Dinsey princesses there. We had a pony, bounce house, snow cones, delicious bbq served by a dear friend from work and her family. We had face painting, balloon arch, a DJ, a stunning three-tier cake, and many other treats all selflessly donated just for her day.
At that moment, I almost forgot everything that our family went through. There were people all standing together to celebrate my sweet girl and all that she overcame. I watched her siblings dance around and friends and family all laughing and talking. I think that’s when I found myself breathing a little easier, and my shoulders felt much lighter. She did it; we did it! I was no longer trapped in the tension of sorrow and joy.
For so long, it felt like I was constantly in this mind-numbing state of saying, “It’s never really over. The fear never goes away.” Coming out of that fog felt like I was learning to live all over again. Things started looking good Sariyah was even granted a wish with The Dream Connection. We talked about a family vacation to the beach or even Disney. Just a full week making memories with my family, no hospitals, Sariyah could be a kid again with no pokes or exams. My kids all deserved this wish, and I was really looking forward to it!
Still, I felt like I was going through the motions and keeping myself busy so that the emotions wouldn’t catch up to me. But one day, they did, and they hit hard. I found myself micromanaging every detail of the house. My thoughts almost felt intrusive. If a tiny thing was out of order, I had to fix it right away. A chair pushed out a sock on the floor, a crumb on the counter. Everything stressed me out and demanded my attention right away.
I was cleaning and organizing the same stuff over and over. Jeff would come home and start cleaning and helping with dinner, and I found myself suddenly snapping at the way he was doing things. Finally, one day, as I was breathing heavily, clenching tightly to my cleaning cloth, I caught a glimpse of myself in the bathroom mirror. Caught off guard, I gasped. I didn’t even recognize myself.
I had sweat pouring down my temples, dark swollen under eyes from a lack of sleep, my hair was disheveled and tangled, and light pink bleach stains sprinkled across my black t-shirt as I stood with my bleach-soaked cloth. The laughter from the other room as the kids were playing brought me to tears.
What was happening to me? My child just beat cancer, and I can’t be still. I’m falling apart. That’s when it hit me. I was holding tightly to that rag, trying to clean and believe that I had some semblance of control. I imagine the whole time; God was gently nudging me to let go and hand it all over to Him. That’s when I knew I needed more help.
I believe in God, and I know it’s taboo to talk about therapy. But seeking treatment doesn’t make you any less of a Christian.
I have a therapist that actually found me and helps me through this nightmare. And I now have a psychiatrist. At first, she said it was PTSD from the trauma that cancer wreaks. But then, over time, she felt like it was something else. Seeing a loved one go through cancer can trigger so much within. And if you run from it the moment it does catch up to you, it’s much more challenging than facing it head-on. I guess this is part of the healing process.
While Sariyah is healing physically, I’m healing emotionally, and somedays it’s a slow crawl, but it’s progress nonetheless.
So many times, I was told to pray harder or to manifest positivity. Some say to focus on the good that she is still here. And of course, I’m grateful she’s still here, but that doesn’t negate the fact that I’m hurting. I began to think it was something wrong with me, but it’s not.
Healing isn’t linear, and it’s a process. I started going back to work in the emergency department for a feeling of normalcy, only hit with the realization that nothing was the same there either. They’ve done a whole remodel, and I found myself walking through what felt like a maze. I smile and tell everyone I’m fine, but no one can see the pain behind the mask.
In many ways, my mind feels like a maze of thoughts. It’s unfamiliar here navigating life on the other side of cancer. Somedays, I’m so happy and rejoicing, and then somedays, I’m consumed with fears of the unknown. There are days when it is a struggle to patch her left eye to strengthen her right eye from all the trauma. Maybe that’s what my heart and mind are doing. I’m trying to strengthen them from the trauma. And so, I take my prescriptions and read scriptures through tear-filled eyes.
I hold my kids tight and do my best to live in the now, though I fail more often than not. I write until my hands hurt, and I share my feelings in hopes of connecting with someone else who understands this perplexing weight of emotions. I even started writing a book. I convinced myself that it would be healing sharing Sariyah’s story and God’s hand over it all. I even gained the courage to send out proposals, something I’ve never done in my life. Out of several proposals to agents, only three replied. They all said it seems more like a memoir, and they didn’t feel it was a good fit. One called me, and I felt so hopeful. But then I was told they needed thousands of dollars upfront, and I watched my dreams shatter.
I threw out all the chapters and went through weeks of a deep depression of feeling not good enough. I focused on creating care packages for other moms of warriors battling cancer. It grew bigger than I could have ever imagined. Because of so many selfless friends and strangers, I’ve been able to send out over 70 boxes so far! I intended to encourage other moms to take time for self-care, but it has helped me in the process.
When we give to others amid our hurting, we simultaneously strengthen our faith and heal too.
There’s A Recurrance
On July 19, 2021, it was time to go back for her EUA. Jeff flies there, but I choose to drive the six hours. It’s healing in many ways for me.
Wednesday quickly approached for her EUA, and I found myself sick to my stomach with anxiety. I went through the steps of helping to hold her down for her eyedrops. When it’s time to put on my surgical attire, I inevitably struggle with the shoe covers. Perhaps it’s because my hands are always nervously shaking as I get anxious for the news. I carried her back through the double doors that I’ve walked through many times before and into the sterile room illuminated with bright lights and machines.
I’ve done it so many times, but this is my first time with her not having her port. The room suddenly felt so chilly. I’m not sure if it was always that cold or if it was the fear settling deep into my bones.
The staff calmly told me to lay her down, but it felt so wrong that she was still wide awake. I needed to hold her close like I always did when she had a port and would fall fast asleep in my arms. She clung to my shirt as I laid her down, and they put the mask on her. Nothing prepares you for hearing your baby yelling, “Mommy,” while inhaling anesthesia and reaching for you. I leaned forward and held her hand while rubbing her head. “Mommy’s here, and mommy loves you.” A single tear dripped down onto her shirt as I watched her eyes roll back.
That part never gets easier. You just do the best you can. I carried her in that operating room, but it was God who carried me out as my legs felt like they’d give way any second. I went to the cafeteria to try and kill some time, and then I came back up to the waiting room. I sat and read a few verses in my Bible while refraining from checking the time.
But I began to get anxious things were taking a little longer than usual. My mind began to race, but everything just had to be okay. It’s always been okay. I always work myself up for nothing.
So when her doctor walked through the consult room motioning for me to come back, I eagerly jumped up. He sat in his usual seat diagonal from me, and I let the words slip out, “So how does everything look?” He paused for a moment, and then he said it. I’m sure he said it, but he had to be talking about another patient. I searched his eyes, and I could see it in his expression this wasn’t good.
He said there’s a recurrence in her right eye. In just the past four weeks since her last EUA, a tumor has formed. He did extensive cryotherapy and said it would cause the outside of her eye to blister, but he didn’t feel that would be enough.
He started talking about plaque radiotherapy. Wait? Radiation in her eye? It’s like I was processing everything a few seconds later as he shared the possible risks that come with the radioactive plaque.
When he mentioned that it would happen within the next few weeks, it was like a dam bursting. Tears covered my face; my heart was racing. It felt like all the blood was rushing to my head, and I could barely see straight. He will surgically place the plaque in her eye, and It will stay in for four days. The air felt so thick. She just went through so much, and now this! I walked out of that room entirely different than when I walked in. I left the waiting room and went straight down the hall; I had to get away fast before my breakfast came back up. I called my husband and let him know the news, and it hit him hard.
Once I made my way back to the waiting room, her doctor called me back in. There in the corner was Sariyah’s other doctor. She stood confidently as they went over everything for the next visit, and then they each hugged me. We have one powerhouse of a care team at St. Jude. They are doing everything they can to preserve her eye while treating this ugly disease. Even with this new tumor, it’s still not blocking her vision, so I feel like we are making the right choice to move forward with this treatment. It all just feels so hard no matter how you spin it.
When the recovery room called for me, I made my way back so fast I almost knocked things out of her stroller. She was in the very back, still, sound asleep, and for a minute, everything looked okay. It wasn’t until I got closer that I was reminded of the evil lurking just beneath the surface. Her right eye was already swollen shut. I stood by her side until she woke up agitated and disoriented. I held her closely entangled in monitor cords and her blanket. I’m the first person she sees before she drifts off, and I’m the first person she sees when she wakes up here; what a juxtaposition of feelings, privileged, grateful, and heartbroken all in one.
After receiving the clearance to leave, I carefully buckled her in the stroller and went to pick up her pain meds and eye drops. I then made my way over to the hotel as fast as I could.
My knees hit the floor, and there in the hotel room, my heart broke all over again. I began desperately pleading with God until I could barely catch my breath.
I felt careless and upset for letting my guard down like this. In reality, I was upset with cancer. I was angry that it can just shamelessly return at any time. I despise cancer with every fiber of my being.
Before my mind could process what my body was doing I walked over to the window for light. I needed to feel the sunlight against my skin. No matter how dark things seemed, the light always finds a way in. I took note of the way the rays of light fell on Sariyah sound asleep in her stroller. I felt overwhelmed with a sense of peace so profound that it took my breath away.
The drive back home that day was long and exhausting. I don’t understand how things can change so quickly. It’s like taking off a band-aid from a fresh wound and leaving it to bleed again. Your next fight is fast approaching. But you didn’t even have time to recover from the last one. You feel blindsided and jaded. Yet you see your child dancing and laughing and playing even with an eye swollen shut and blistered. That’s when you know there’s only one choice. You put the gloves back on and get back in the ring.
Through blood, sweat, and tears, you are ready for war because, according to the National Pediatric Cancer Society, “Only 4% of the billions of dollars the government spends annually on cancer research is directed towards treating childhood cancer.”
Does that bother you because I know it upsets me? Our children are worth more than 4%. And so I brace myself for round two of a battle no child should have to go through. I’m still trying to catch my breath. She’s still healing; our whole family is healing. We were supposed to be planning a vacation through The Dream Connection, not planning for radiation.
I knew that things could change, but I hoped and prayed for the best. I still wake up many nights covered in sweat, shaken up from another nightmare reaching in the dark for my Bible on my nightstand.
I am heartbroken. I am angry. I am devastated. I am shocked. I am scared. Despite the waves of emotions, I am still reaching for my Bible in the dark. I am the woman in the book of Matthew audaciously reaching for the hem of His garment. As I struggle and grapple with the tension of sorrow and joy again, I am slowly learning the dance because I am growing and healing with each step nonetheless.
I am more careful who I let in these days. Mainly because right now, I just can’t be the friend I want to be. And mostly because I have to protect my peace now more than ever for my sake and for my family’s sake. I know I need uplifting people in my corner. This cancer walk is messy; the blows come and go faster than a boxer in a match. So when I feel defeated and can’t stand another hit, I need encouragement in my corner filled with hope, grace, truth, and love. One of my best friends said it best when I texted her that the cancer came back.
“But God never left.”
We all end up thrown in the ring, wrestling with many different things in this life. Some blows from the opponent hit so hard they leave us scarred and broken. Even so, our opponent is no match for God’s glory that shows undefeated every time. He never leaves our side, and I’m so glad we don’t have to fight alone.
Now I’m stepping back into the ring with my little warrior, whose joy, strength, and tenacity are a force to be reckoned with. We are heading back to start the long process on August 2nd, 2021, and will be there for ten days.
Let’s fight this!