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BIG Love Cancer Care

Journal entry from December 2004 - February 2005

At midnight, on Christmas Eve, a miracle happened. A kiss from God to you, sweet Brooke. It snowed.

For the first time in over 20 years, the Texas Gulf Coast was lightly dusted. Seeing white-roofed houses, snow covered trees and children building snowmen in their front yards, was a foreign, yet incredibly breath-taking sight for us all.

We were released from the hospital at noon on Christmas Day. And with great expectancy, we headed for home. This round of chemo had been hard on you. It left you drained and very frail.

When arriving home, you barreled out of the car and immediately plunged deep into the snow. As I watched you giggle with delight as you threw handfuls of snow at everyone, engaging the entire family in a very spirited snowball fight, I couldn’t help but compare you with the miraculous, pure-white snow. With your winter beanie pulled down to your eyes and bundles of winter clothes, all we could see was your joyful little smile, pale-white face and bright, green eyes. So pure, so innocent, so perfect.       

You and Taylor worked hard on building a snowman. You formed his body and added a scarf, hat and even a cigarette.  Ha! 

I could tell you were struggling to play, to keep up with Taylor. You wanted to play so desperately, but you were weak and tired. Throughout the night, your temperature continued to escalate. By the next morning, you had dark circles under your eyes and could barely hold your head up to open your presents. You climbed in my lap and let Taylor open most of your gifts.

However, when Taylor opened your long, red-haired Little Mermaid Wig, you jumped up, and disappeared in the back room. From the hallway, Taylor announced, “Introducing Brooke Alyson Phillips.” You sashayed across the living room as confident as any New York Model on a runway. Red hair flowing, princess gown sparkling and bright smile beaming. At that moment, you felt beautiful.

By 2:00 p.m., on December 26th, with your temperature steadily increasing, we headed back to Texas Children’s Hospital. Thankful, however, for the 24 hours we got to spend at home.

Because of some slight congestion, they ordered a chest x-ray. At this point, you had had many chest x-rays. You were familiar with the process and knew most of the technicians by name. However, as they were trying to lay you down on the cold, hard x-ray table, you started to cry. Your lungs were hurting more than any of us had realized. You always tried to be so brave for us. Never wanting to complain or fuss. Always trying to withstand pain in order to stay home.

But from behind the protective wall in the x-ray room, I could hear you as you started to panic and become fearful. I ran to you, working my way through the technicians, I picked you up from the table and held you close to my chest until you settled down. I whispered in your ear, “We are always here for you, Brookie. We will never leave you. If you need us, if you are hurting, you just shout our names, and we will be right by your side. You don’t have to afraid. We will always be here to protect you, always.” You laid your head on my shoulder and breathed a deep breath.

The results from the X-rays and CT scan were devastating. You have “something” attached to and wrapped around your right lung. Your doctors started you on a barrage of medications.

After several days of decreasing oxygen saturations, your doctors decided to put you on 24 hour oxygen to help you breathe. You cried as they looped the tubing behind your ears and gently placed it in your nose. How I wish I could take your place!

At 3:00 pm, you had terrible shakes and a fever of 105.1. We tried to combat the fevers with wet washcloths, persistent Tylenol, ice packs and cooling blankets. Your nurse brought some ice packs and put them around your neck and under your arms. Shaking uncontrollably, you looked up at me, with a wash cloth draped over your little bald head and your eyes barely peering out from underneath it, you asked, “Mom, please sing me a song.”

Looking deep into your eyes, I began to sing…“You are deserving Lord, of all our praises.”

As the words left my lips, a wave of emotion hit me so hard. I couldn’t breathe. I couldn’t sing. You were just looking at me – waiting. Waiting for me to continue. Seeing that I could not regain my composure, your Dad, kneeling beside the bed, took a hold of your hand and started to sing the song where I left off. A great peace settled in our hearts.

After the weekend, you were scheduled for a lung biopsy to retrieve a sample of the infected lung for further cultures and testing.

You prayed endlessly, “God, please make me better-so I can take off my lines-so I can fly-make me better.”

On Monday evening, January 17th, we wheeled you to the operating room to prepare for the procedure.

In the waiting area, I watched the clock intently. I watched every second on the clock go around and around. I could not engage in casual conversation with the strangers that surrounded me. The commotion, the people, the children, the talking - all of it was making me crazy. I stepped into the hallway to get away. From there, I could see the door to your room. How I wished I could be right there beside you.

Then all of sudden, I noticed a police officer escorting people from the hallway. Nurses and doctors were running from every direction, headed towards your room. I started to run to you too. But your Dad caught me by the arm, whirled me around and wrapped his arms tight around me. He held me tight. With incredible calmness and peace, he gently whispered in my ear, “Jessica, no matter what, we will hope against all hope.”

After 10-15 minutes, the lung doctor, now shaken and exhausted, approached Dad and I in the hallway. He looked down at the ground, tears forming in his eyes. He said, “I don’t know what happened. I have done this procedure thousands of times. I have had some scares, but this was by far the worst situation I have ever been in. When I went in to biopsy the lung, I must have hit a blood vessel. Brooke began to gag and cough. She threw up around 100cc of blood. Then, all her vitals started to drop. We had to call an emergency code. For now, she is stable. She is receiving blood and platelet transfusions and in the next few minutes, we are going to transport her to the Intensive Care Unit.”

Within just a few minutes, the hall was cleared, and a team of doctors, nurses and staff escorted you to the Intensive Care Unit. We walked beside your bed. An oxygen mask was covering your face, and IV bags of blood and platelets were replenishing what was lost. Even with tubs and wires and blood and masks, you still looked so beautiful and so peaceful. I wanted to scoop you up and hold you in my arms.

We followed you to the Intensive Care Unit, and watched from the hallway as doctors and nurses worked efficiently to take care of all your needs.

We were uncertain of what to expect over the next few hours. I sat in a chair beside your bed all night long. Watching and praying. Several times during the night, you coughed up blood and battled fever.

At 2:00 am, you woke up for the first time.  You looked at me then scanned the room. You asked, “Momma, where are all my people?” Tears streamed down my face. My little girl was okay.  

The biopsy showed that you had a fungus attached to your right lung. This was not good news. You would have to stop chemo treatment for now and focus on curing this fungal disease. It is a very aggressive disease and can quickly attach to other organs. With a suppressed immune system, this left you extremely vulnerable. You began a daily regiment of two different anti-fungal infusions and a long, extended stay at Texas Children’s Hospital.

Several days later you woke up early saying, “The sun is up people – time to wake up.” What a difference a few days can make. You have had no fever and no need for oxygen. You got dressed up in full princess attire, high heels and all, and we walked the floor. The nurses, all smiles, were telling us how wonderful it was to see you back to your old self again. You did a dance to Funky Town and cranked your bed up and used it as a super slide. You washed your baby doll’s hair over and over again and wrapped her head in a washcloth. You rehearsed all your nursery rhymes and have talked to everyone about your big sister Taylor. All day long, as people entered our room, you would say, “I have a big sister named Taylor. She is five and has curly hair.”

I feel so blessed and so grateful for today. 

One morning, you looked at yourself intently in the bathroom mirror and said, “Well Bwookie, you got your line, and you’re still on your pole. It’s alright.” With a graceful contentment, you had decided to accept your present reality. And the hospital, although so difficult at times, had become our home-away-from-home, especially over the last 51 days. You not only accepted your reality, but you started to take ownership. Besides assisting the cleaning staff in sweeping the floors and persuading them to let you keep a broom in your room for unexpected messes, you spent numerous hours in the shower cleaning the walls.

You knew every detail of the cancer unit. You knew which rooms you liked, and which ones you didn’t. Room 32 was too small. You loved room 5 because it was the biggest and had plenty of room to park your Barbie Bike. You liked sitting at the nurses’ station with Stephanie. You liked dancin’ in the hall with Mercy. You liked flirting with your “boy” nurse, Rich, and you liked talking girl talk with nurse Beth about how Spiderman had kissed Mary Jane. You confessed to Beth that this made you angry. You said, “Piderman is such a jerk.” 

You liked going to the movie store (the conference room across from room 911) and picking out videos. And you loved going to the 16th floor to visit the library and Radio Lollipop. You loved it when the Radio Lollipop DJ asked you to marry him. You loved all the snack and coke machines. And you especially loved the coffee cart guy with his big smile and loud voice when he yelled, “COFFEE CART!” With coin purse in hand, you would run to him like you were running to the ice cream truck. You liked riding the elevators. You liked going shopping at the mall (the gift shop). You loved walking across the indoor bridge, standing on the window ledge and jumping off. You loved the stars on the ceiling in the Chapel that sparkled. You loved the way the mirrors in the clinic elevators made you look big and fat, and sometimes, short and skinny. You learned to enjoy the simple things in life…and find a joyful contentment with your circumstances, a quality you have taught us all how to embrace. 

You cared so deeply about other cancer kids. You would wake up and pray for them when you heard them crying in the middle of the night. You colored them pictures and took them toys to cheer them up.

One day, when you were really sick with high fever, lung pain, and shivering uncontrollably, we were having to wait in the radiology department for another CT scan. Next to our partition, was a young couple with a baby. The baby was wailing, and the parents were frantic. You grabbed our hands and held them tight. You looked up at us and said, “Let’s pray for that baby okay?” As Dad started to pray, I watched you. With your head bowed and eyes closed, you were whispering your own prayer under your breath. You taught us so much, Brooke. You helped us to step outside of ourselves. To realize, that although we were suffering immensely, there are always others – all around us – who are hurting and in need as well.

With you leading the way, we began to give and love and serve. We made and prepared food and gave it to families in need. We worshipped and had communion with others. The cancer unit became our family. When one of us struggled, we all joined together to help. All of us learned to make TCH our home – our place.

 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.” 2 Corinthians 1:3-5

 


Keith (December 13, 2016)

This is sweet

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