Picture This

As I stare at a photo on the mantel in my living room, my eyes begin to well and I can taste the salty tears that moisten my lips. A knot forms in my throat and silences me like a stern “hush” from my mother. Anger covers me with wicked serenity. Confusion, hurt, and helplessness open a time capsule to the worst season of my life.

Three months before that picture was taken my mother, Grace, noticed that my three-year-old daughter, Maleah’s, glands were swollen. She insisted that I take her to the doctor. I conceded and made an appointment for her. Doctor Williams thought that it might be an infection and put her on antibiotics. Just a few days later, my daughter’s glands enlarged even more, and because it was a weekend I took her to Sandlake Hospital. The on-call physician ordered a battery of tests, one of which showed that Maleah’s white blood cell count was higher than it should be. I was given the rundown of possible ailments that could cause the spike in her counts. She was tested for many of them – meningitis, influenza, among other infections – all of which were negative. We were sent home with instructions to follow up with her primary physician and continue the antibiotics.

That Monday, while on break at work, I called Dr. Williams and informed her of the weekend’s events. She told me that she intended to send Maleah for blood work later in the week, but she urged me to take her in to Arnold Palmer Hospital right away. I agreed and told my boss, Carol, that I had to leave and she obliged.

Awesome, I get to leave work early! I thought.

I didn’t have a care in the world, but that would soon change. When I arrived at my mom’s house to pick my daughter up, I walked over to her and said, “Hey, Love Bug! We have to go to the hospital to find out why you look like a blowfish!” She thought that was hilarious - I can still hear the sound of her infectious laugh. Maleah laughed as if she knew the importance of the business of laughter. After she gave my mom a hug and kiss, we were off.

“Thomas, Maleah? Thomas, Ma –?” called the nurse.

I jumped up and waved my hand, “Here we are!” I said scooping up my daughter and my purse.

“So, what brings you guys in today?” the intake nurse asked as she was dotting I’s and crossing T’s on her forms.

“Well, about a week and a half to two weeks ago, we noticed that her glands were swollen,” I said pointing at Maleah’s throat. “I took her to her doctor and was given antibiotics, but they just got bigger! Saturday, I took her to Sandlake Hospital and was told that her white blood cell counts were high. She was tested for the flu and meningitis, and some other infections but they were all negative.” I said, somewhat unsure of my accuracy.

“Ok, did she start a fever – or – what made you come in today?” the nurse questioned. I told her that Maleah’s primary doctor sent us over after finding out about the hospital visit over the weekend. After taking vital signs, temperature, and weight, we were sent to a room in the back to await an “Attending.”

The attending physician informed me that he reviewed the charts from the other hospital. “Some of these tests are helpful in determining what is wrong, but some are pointless,” he said with an annoyed tone, “a-a-and the ones that are most important weren’t done!” After apologizing for the frustration he displayed over what took place at Sandlake Hospital, the doctor advised me that they would draw blood and run more tests.

Not long after the blood was drawn the Attending Physician came back, only he walked into the room differently. This time he fought with himself. He stood at the door for a moment before he walked in, shoulders slumped, eyes lowered. He was the bearer of bad news and though he knew he had to do it, he would’ve preferred not to. The doctor began by explaining to me the function of the white and red blood cells. He then told me that Maleah’s white blood cell counts had more than doubled since our hospital visit on Saturday.

“Although I can’t say with 100 percent certainty, it seems that she may have leukemia,” he somberly said. “Further tests will need to be done to confirm, but with the dramatic spike in her white cell counts, it is a very high indication of leukemia.”

“Wa – wait a minute, LEUKEMIA?!?!” I said. “That’s like cancer or something right? No, uh-uh, she doesn’t have that! You have to do your test again because you are wrong!” I was angry and confused. “We are going to admit her to run more tests,” he said. “I am very sorry and I wish you both good luck.”

Within minutes an orderly arrived to take us to our room upstairs. In a whirlwind of purposeful chaos, she got instructions from the ER, grabbed our paperwork and belongings and ushered us to the elevator. “Going up,” she sang as the doors closed on life as we knew it.

I remember the sound of IV pumps beeping, codes being announced over the loudspeaker, and hearing the substantial black lady with short salt and pepper hair answering a call from one of the rooms, “Yes, okay, I will let your nurse know, honey.” I recall cheerful hellos from nurses who wished they didn’t have to see you. Not, because they were tired or hated their jobs, but because their souls ached and their hearts began to cry whenever they got a new patient on this floor. The orderly showed us to our room in the Hematology/Oncology unit on the seventh floor and wished us good luck as she walked away.

I sat down on the bed and held Maleah tightly as I tried to understand what was happening. My mind was racing, but I wasn’t forming any clear thoughts. The attending physician’s words replayed in my head like a scratched record and I couldn’t make them stop. It seemed as if I was outside of myself watching these events unfold. I felt helpless.

Within minutes, a team of doctors, nurses & other hospital staff entered the room after lightly rapping on the door.

Jessica walked in first, her wide smile desperately, yet unsuccessfully attempted to brighten the darkness that engulfed the room. She spoke with a Southern accent and she had complete confidence in her words. Jessica told me that she was the nurse for our oncology team and would be assisting the Doctors with Maleah’s treatment. She assured me that she was there if I needed anything.

All I could think was, Jesus, why do we have an oncology team?!

The nurse practitioner, Becky was next. She held files & papers close to her chest as she leaned forward to shake my hand. Her shoulder-length blonde hair was pushed behind her right ear, which is also where she stored her ink pen. Her face was serious. She said that she would provide me with paperwork and information about Maleah’s diagnosis and treatment plan and would be available to answer any questions I might have.

When Dr. Eslin walked into the room his cheerful spirit preceded him. He was a thin man of average stature with short brownish hair, thin-rimmed glasses, and Disney characters emblazoned on his necktie. He assured me that they would do everything possible for Maleah and that he was confident in the treatment plan they had put into place for her. Dr. Eslin connected with Maleah immediately, making silly jokes and funny faces at her while the others talked to me.

Dr. Giusti was a silver-haired man with hopeful, sad, determined eyes. His forehead wrinkled with the weariness of countless families who had been in the position I found myself in that day. His concern and love were sincere. I could tell he was in charge before he uttered a word. But when he did speak, the words were foreign, incomprehensible. “Your daughter has Acute Lymphoblastic Leukemia with a B-cell precursor.”, he said firmly. Though he spoke humbly and with compassion, those words – those words were harsh, rough. He may as well have cursed me out!

I was offended that he had the audacity – no, no the NERVE to walk up in my face and tell me about MY child.

I don’t know who he thinks he is talking to, but this news is not for me, I thought to myself. I was infuriated! This man must really not know who he is talking to! He is one brave somebody to walk in the room and make such a bold statement…to me!! Hadn’t he heard about me? Didn’t he know that you don’t mess with my family, especially not my kids?

“No suga, uh-uh, nawl”, I said shaking my head with my hand on my hip. “You have those results mixed up with someone else’s. You can’t speak that over MY baby, don’t you know there is power in your words!” My face was like stone, my heart a bass drum pounding relentlessly, my entire body trembled uncontrollably. “You are in the wrong room!” I insisted pointing at the folder he held. “You better go tell that to somebody else or you need to have them redo her tests, because that…that is not right! THAT is not for us!”

“Mrs. Thomas”, he said. “We have tested and retested. The results have been looked at by……..”

I couldn’t hear him. I had no idea what he said. His mouth moved, but there were no words. No words.

When I could hear again, he was saying, “Mrs. Thomas, Maleah has b-cell precursor acute lymphoblastic leukemia, which is very aggressive and she needs to begin chemotherapy right away. We have scheduled her for surgery tomorrow morning to have a central line placed; she will be given the chemotherapy drugs through the line. We would like to start treatment as soon as possible.”

I couldn’t breathe. I felt like I was dying.

“I told you to retest her!” I said while sobbing and holding Maleah as tight as I could “I am not letting you operate on my baby! I’m not going to let you give her chemotherapy. Your tests are wrong!"

By this time I was hysterical. “How will you feel knowing that you’ve done surgery and given chemo to a child that has nothing wrong with her?” I yelled between sniffles. “I just will not let you do it because I refuse to believe that this is true! God wouldn’t allow this to happen to her…He wouldn’t allow it. There is no reason for her to have to go through this, she is only three, she’s just a baby! No, this is wrong, God wouldn’t do this to her. I refuse to…”

I sat down on the bed with tears streaming down my face. I just cried and rocked.

Between gulps of air I mumbled, “I don’t think God…God wouldn’t let this happen to her.”

“Mrs. Thomas, I am a Christian as well, and sometimes God heals us by using medicine and I think you should allow us to treat Maleah,” Gina, the pharmacist, said as she sat next to me and held my hand. “The test results are correct, and now it’s time to think about treating her.”

My mind and heart raced. Gina gently squeezed my left hand. I couldn’t form a thought. I couldn’t believe what those people were saying to me. I told them I would need to think about it. I needed to pray. I needed to call my husband and mom.

“Ma, they say she has leukemia” I cried.

“What?! Toyia! What did you say?” my mother yelled into the phone. "They said she has leukemia. They want to operate and start chemo tomorrow!”

“I told them no!” I said still crying, but a little more audible. “I told them they had the results wrong.”

My mother was silent for a moment.

“I think…maybe…you need to let them do it,” she said just above a whisper. I could hear the pain in her voice, but she didn’t cry on the phone.

My heart broke.

“Ma, what if it’s wrong?” I cried. “I don’t believe it, because God wouldn’t do this.”

“Toyia, God can still heal her,” Mom said. He has a plan, but maybe this is how He is going to heal her. We still trust and believe that He can and will work miracles for her, but you need to call them and tell them to start the treatment.”

I was inconsolable

What is going on? I thought. As soon as I decided to dedicate my life back to God, he allows this to happen? I can’t believe he would do this. What did Maleah do to deserve this? This happens to other people, the ones on talk shows and made for TV movies. This doesn’t happen to run of the mill regular folks.

I felt helpless, hopeless, and defeated. I felt betrayed by God. I wondered, ‘Why my daughter’?

This whole thing was senseless.

For as long as I can remember, I have been a protector. Even as a little girl, I instinctively protected my family. Ask the boy that pushed my cousin, Todd, down on the school bus; ask him what I did to him. Ask the kid who teased him outside of my fifth-grade classroom. Ask the girls who tried to jump my niece. If I know about it I am going to handle it, because you don’t mess with the people I love. But not this time, I was down for the count. What kind of mother was I? I couldn’t defend or protect my baby girl. What was I good for at that point?

Although as I look back, I can see God's hand all in this. I didn't see it then. I was mad. I pretended to be on good terms with God, but I had fallen out with Him. I talked about Him. Asked people to pray and fast. But I wasn't feeling Him around that time and we were not friends.

He had betrayed my daughter, and you don't mess with the people I love. I couldn't talk to Him. Every time I tried, I thought about how He let this happen to an innocent baby. I never stopped believing in Him or His power, I was just so confused and angry with Him that I couldn't bring myself to talk to Him for myself.

I am thankful for the prayers of my family and friends during that time, because my heart and mouth were closed.

The morning after the diagnosis, my husband Marco, son Marco Jr., mom Grace, and nephew Jalen came out to Arnold Palmer Hospital for Maleah’s surgery. The surgeon and anesthesiologist came in to brief my family on the surgery. They explained that they would be placing an external IV port in her chest to administer chemotherapy, other IV medications and also draw blood. The doctors told us that it was a simple surgery that would take approximately an hour to complete. But, there was nothing simple about any of this.

I held Maleah while we sat in the pre-op room. My husband, mother and I showered Maleah with kisses as they wheeled her away. As soon as they were out of sight I broke down. I cried until my throat and head hurt and the tears stopped coming. I cried until there was no sound. Then, I cried silently.

After a while I pulled it together enough to go out to the waiting room with the rest of my family. We sat and we waited. I paced. And watched the clock. Waited. Paced. Watched the clock. Finally, time was up. But no one came through the door and called our names. Where were they? I went and stood at the reception desk, but the receptionist just sat there. Ok, she’s busy, I’ll just wait. Another few minutes passed and she still hadn’t offered assistance. She picked up the phone. Hung up the phone. Walked away and came back. Still nothing. “Am I invisible or don’t you see me standing here? I’ve been standing and waiting, but you have yet to acknowledge me. What is the problem?” Now, she was attentive. “Oh, ma’am, I am so sorry. I didn’t realize you needed help!” she explained. “You thought I was just standing here, at your desk for fun? Whatever…they said my daughter should be out of surgery by now, but I haven’t heard anything.” I barked. She requested my name and my child’s name and promised to return with status. After a few minutes, she told me that someone would be right out.

“Mr. & Mrs. Thomas?” a voice called out. We stood and the doctor walked over to us. He told us that the surgery went well and that Maleah did great. He told us that she would be in recovery for about forty-five minutes and then an orderly would take her back to her room. The doctor warned that she would be sore and in pain and he told me to make sure that she takes it easy. We obliged, thanked him, and hurriedly left the waiting room.

When they wheeled Maleah's bed back into her room, she was wide-eyed and ready to start her day. She wanted to play with her brother and cousin, I tried to stop her, but she insisted that she was fine. She led her two playmates out of the room to find an adventure. When Dr. Giusti and his team came into the room to check on Maleah not long after she left to play, they thought she was in the restroom. They were astonished when they found out that she was in the playroom. With a bewildered smile on his face, Dr. Giusti said, "that is remarkable." They then outlined her treatment plan and schedule and told us what to expect. She would be on chemotherapy for two years – first up would be in-patient cycles where we would check into the hospital for a week twice a month, followed by weekly outpatient chemo infusions and finally maintenance which would be a combination of out-patient treatments along with a regimen of chemo and steroid pills Maleah would take at home. After explaining the plan to my family and I, Dr. Giusti then went to the playroom to take a look at Maleah's port, because she was too busy to come back into the room. When he returned to us, he again mentioned his astonishment about how quickly she was up and active after the surgery.

That amazement that Dr. Giusti had would continue throughout Maleah's entire treatment. On more occasions than I can count, her doctors admitted to being baffled by her progress, response to treatment and her overall ability to bounce back given what she was being exposed to. Chemotherapy is quite literally poison. It is, however, the lesser of two evils. We were blessed; Maleah didn’t suffer from many of the side effects that are associated with chemotherapy. Other than a brief bout with mouth sores, weight loss and some skin and nail discoloration, she breezed through the entire ordeal. Many cancer patients don't have that testimony.

The one side effect that I must admit I was ill-prepared for, was when she lost her hair. She had been on treatment for about a month with no hair loss, so I had convinced myself that she had odd-defying hair that simply wouldn’t fall out. Maleah is a girly girl, who at two years old, refused to take a family picture without putting on a fresh coat of lip gloss. So, it is understandable that my heart packed up its belongings and took up residence in my stomach when I noticed that her braids were beginning to peel up around her hairline. It was no surprise that breathing became as foreign to me as Istanbul when I further discovered that she was completely bald underneath her ponytail. All that was securing her long, thick, beautiful locks to her precious head were a few reluctant, defiant strands of hair. I motioned to my mom to come take a look; she grabbed my daughter and held her as if she was transferring all the love inside of her to Maleah through that hug.

I cried in the bathroom. I cried for my daughter, she was just a baby and didn’t deserve this. After collecting myself, I explained to Maleah that her hair was falling out from the chemotherapy. I told her that only a few strands of hair were still attached to her head and I assured her that her hair would grow back longer, thicker, and prettier than before. I asked the permission of my three-year-old daughter to cut her braids off, she acquiesced and then she was bald. As she scurried off to the full-length mirror in my mom’s room, my mother quietly summoned Jesus and I ambulated in the living room awaiting her return. She walked back into the living room and we all sat gap-mouthed eager to hear her reaction. “Mommy, I have a cute head!” she exclaimed, with one hand on her hip, one leg cocked out in front of her and rubbing her head with the other hand. The room erupted. We laughed and we cried; it was then that my heart started the long journey back to its own home. At that moment I knew we would get through this; we were going to be just fine.

Her strength gave me strength. She was in the middle of a fight for her life and had just lost all of her hair, but she only saw the good. That simple statement – her resilience in the face of adversity taught me so much about where I wanted to be spiritually. I was having a crisis of faith. I knew God was there...somewhere, but I had decided not to chase after some God who I felt had abandoned me when I needed Him most. I had been wallowing in fear and frustration. I was throwing a tantrum and Maleah, by God's divine appointment, was an example of how to respond to life's trials. I hadn't had a real conversation with God in weeks, but that immediate reaction from a toddler who had just experienced the trauma of going bald, reminded me that God is still God regardless of what it looks like.

When I look at this black and white photo, I see my daughter, my baby, standing tall and proud, and looking straight into God’s eyes; bejeweled with the toy gold and ruby necklace given to her by our Pastor when she came to the hospital to have an impromptu tea party. In this black and white photo, she wore a pink skirt with flowers embroidered on the bottom; her hospital ID bracelet was a mandatory part of her ensemble. IV lines, or “tubies”, as the patients and nurses called them, conspicuously bulging under her white shirt with the tiny pink bow at the neckline. IV lines are lying on the floor, trying desperately to hide from the camera, and in the distance, beyond the scope of the lens, an IV pump with a fully charged battery is steadily pumping Methotrexate or Cyterabine into her bloodstream by way of the Broviac catheter that was surgically implanted in her chest months earlier. Maleah’s lips are pursed and her eyes are deliberate, everything about her says courage, confidence, and determination. In all the darkness that surrounds her, she is the persistent light that shines through.

Thinking back on this season reminds me of so much pain, helplessness and uncertainty, but it also reminds me of strength, hope, faith and love. Now, more than 14 years later, everything chemotherapy took away from her has been replenished. Maleah was healed by the Blood of Christ. This I know for sure. Maleah has had no long-term side effects from her treatments, she is excelling in school and her one prayer, that God gives her back her hair, was answered. God's hand and plan are the only explanation for the favor that we experienced during this trial. This was one of the hardest things I have ever had to walk through, but it made me realize that there really is nothing too hard for God.

According to the book of Isaiah, “He [Jesus] was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.” When I flip through our family pictures, none of them make this passage of scripture more real or more relevant than this one. I know with certainty that we are not given more than we can bear. I was acquainted with my own strength during this time and we became fast friends. My faith and my sanity were tested and I am ever thankful to God for keeping me during that season. This photo of the little girl with the infectious laugh and the unbreakable spirit reminds me of the time we fought leukemia and won!