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B.I.G. Love Blog

The day our daughter was diagnosed with leukemia

As I ponder all that has transpired in our lives since September 14, 2004, the day our three year old daughter, Brooke, was diagnosed with leukemia, it is hard to believe what we have lived through. It is painfully difficult to look back.

In honor of all the families who fight this battle, I wanted to share a little from Brooke's story. Unfortunately, stories like ours will repeat over and over again - approximately 3,000 times this year in Texas.

"Brooke, after two days of antibiotics and fever-reducers, your condition only worsened. You were extremely fatigued and started complaining of leg and back pain as well. As you slept between Dad and I in bed that night, you were painfully restless and were struggling a great deal to breathe. I laid beside you stroking your hair, and listened intently as you whimpered in your sleep. As I watched you, I knew that something was terribly wrong. The next day, we decided to take you to the doctor again.

On day eight, a wave of deep despair flooded my heart. I cried and wept and prayed. Hoping that my loud cries and beseeching prayers would somehow change our impending storm. I scooped you up in my arms and headed to the doctor's office again. As we waited patiently for your name to be called, you cuddled up close to my chest. Your eyes, surrounded by dark circles now, still sparkled when you looked at me. You casually talked about the other kids in the waiting room and asked your usual montage of questions. I tried to stay chipper and upbeat, engaging you in light conversation while deep inside, my heart was beating out of my chest, my hands were shaking, and my voice was on the brink of tears. After the doctor took one look at you, he ordered blood work and a chest x-ray without my insistence. He gave us new prescriptions and said he would call us as soon as possible with the results.

When I returned home, our landlord was boarding up the windows of our duplex and gave me strong advice to evacuate tonight. A storm, a hurricane, was headed our direction. And if you live south of New Orleans, Louisiana, you evacuate. By now, we had very little daylight hours remaining, and your Dad was still not home from work. Without hesitation, I began to pack with the utmost speed. Clothes were flying everywhere. By the time Dad got home, we were packed, and sitting in the truck, buckled and ready to go.

Chaney's phone rang. He quickly answered and by the expression on his face and the somberness in his voice, I knew something was very wrong. You and Taylor were frantically trying to get your movie started in the backseat. At that moment, I was keenly aware of every detail, sight and sound. I hung on every word. Your Dad said, "Jessica, look at me. The doctor said that he is absolutely certain that Brooke has Leukemia and that we need to drive straight from here t o Texas Children's Hospital. He will call ahead for us and have them waiting and ready for us in the emergency room."

I broke. Chaney and I both wept uncontrollably. And because we did, your sister did too. She cried and prayed as much as we did. But not you. You had your legs crossed and propped up on the backseat, relaxed as ever.

At the hospital, it was chaotic as nurses and doctors scurried about getting blood work, chest x-rays and IV fluids and antibiotics. You were in good spirits though. Your child life specialist helped you through all your needle pokes which you handled like a pro. And after learning of your deep love and affection for Spiderman, he quickly brought you all kinds of Spiderman paraphernalia.

Our family and friends started to arrive at Texas Children's shortly after we were admitted into the emergency room. Two by two, they were allowed to come back and see you. Each family member, with eyes brimming over with tears, hugged us tight and looked at us with eyes of determination and hope. Eyes that said, "We are believing with you for the best." They all took turns visiting with you. And with your great big smile and witty personality, you cheered everyone up.

After several hours, an Oncologist, a tall man with long brown hair, entered our small room. Our fears were soothed somewhat by his presence for his eyes and voice were filled with kindness and gentleness. However, he did not bring us the news we had hoped for. Rather, he confirmed the initial report. Slowly and methodically, he said, "All tests confirm that your daughter does have Leukemia. Her lab work revealed leukemic blasts in her blood, and her white blood cell count is very high. We are transferring you to the cancer floor to begin an extended treatment protocol. She is also in immediate need of transfusions of red blood cells and platelets."

Your Dad and I walked slowly and trance-like to the lobby area where all of your family and friends were waiting for the news. There must have been 20 or so people gathered there. We looked in their hopeful eyes and reported to them our devastating news. We all wept bitterly. After several minutes, we all held hands and prayed. We needed a miracle.

Upon arriving on the pediatric oncology unit, with the brightly colored blue, purple and green walls, we were admitted to room 911. We were instantly bombarded by nurses and a myriad of other hospital staff asking us endless questions and requiring incredible amounts of paperwork. Not only were we exhausted from traveling and running from the hurricane, but we were emotionally and physically bankrupt.

Dad and I pulled out the couch bed beside you and began to organize our sheets and blankets. We laid there beside each other as still and as quiet as possible watching you and listening as you whimpered in your sleep. And then out of the darkness and quietnes s, our present reality hit me hard. I couldn't breathe. As each minute passed, I was buckling under the weight of fear. Your Daddy, holding me tight up against his chest, quoted every scripture he could remember and sang every worship song until a calming peace swept over our hearts.

Our first night in room 911 was alarming. We did not comprehend the seriousness of your condition that first night not until frantic nurses hurried into our room at 4:00 am with news that all your electrolyte counts were dangerously low. They immediately began working on additional IV lines to give you critical doses of potassium and magnesium.

The next morning brought a measure of relief as the sun shone through the window, and we heard your little voice say, "Mornin' Mom. Mornin' Dad." A smile broke out across our stress-filled faces.

Although, we were thankful that the previous day was behind us forever and that today you looked somewhat better, our anticipation of the days ahead (the years ahead) made our knees weak and our hearts feel faint."

BIG Love Cancer Care was created for one simple reason - to help EASE the immense burden of the Childhood Cancer Journey - to bring our kids and families much needed support, love and hope in their very darkest hours.

THANK YOU FOR LOVING US AND PARTNERING WITH US! - Jessica and Chaney Phillips

 
 

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