Don’t Worry, Daddy

 

Continued from previous post… When Words Matter Most

 

Christmas, 2002, and June 13, 2009

Alyssa, purposely speaking in a voice younger than her years, wrote this poem for Richard. She gave it to him as a Christmas gift in 2002. She was sixteen-years-old at the time. Even when moving from one house to another, the framed poem, a sweet testament to the bond this father and daughter share, has been proudly displayed. After Alyssa and Andre married, she gave her Dad another special gift. She framed photos that beautifully capture tender moments between she and her Dad on her wedding day. Richard hung the framed photos above the poem. Both are gifts he treasures. 

Don’t Worry, Daddy

Don’t worry, Daddy, I can do it all right,

You don’t have to help me brush my teeth at night.  

Don’t worry, Daddy, the slide’s not too tall,

I promise to be careful. See! I didn’t fall.

Don’t worry, Daddy, I can get myself dressed,

Besides, what you picked out never matched.

Don’t worry, Daddy, I’m not scared of the dark,

You can turn out the nightlight- no! not the one in the hall.

Don’t worry, Daddy, I’ll be ok,

Kindergarten won’t be too bad, so they say.

Don’t worry, Daddy, I can ride just fine,

See! Just like you! I’ll be racing in no time.

Don’t worry, Daddy, I can do it myself,

Teacher said not to get any help.

Don’t worry, Daddy, I’ll keep the doors locked,

And won’t open it to strangers who knock.

Don’t worry, Daddy, it’s just a boy on the phone,

It’s not like they’re here when you’re not home.

Don’t worry, Daddy, I’m not grown up yet,

Not by a long shot, and I’m not rushing it.

Don’t worry, Daddy, I still need you

To hold my hand, and see me through.

Don’t worry, Daddy, I still need your help

When life’s fire gets too hot, and I just want to melt.

Don’t worry, Daddy, you’ve taught me true,

What I can do on my own, I can do because of you.

to Daddy, from Alyssa – Christmas 2002 

Richard and Alyssa, June 13, 2009

 

But Richard was worrying. As you will read, the fire was hot. Alyssa still needed her Daddy’s help to hold her hand and see her through. 

 

Saturday, September 9, 2017, Midnight to 9:00 a.m.

I left Richard’s warm embrace and we both walked to stand on either side of Alyssa’s railed and padded ICU hospital bed. In the dim light, we looked down at our daughter’s pale face. As if waking from a dream, her eyes opened and she spoke her first intelligible words in over 8 hours. 

“Hi Daddy,” she said with a slight smile and soft voice. 

“Hi Alyssa,” he replied quietly. 

“May I have my arm?” she asked. 

Again, her eyelids closed. Even though she had not understood, nor did she investigate, why her arms were restrained, I was thrilled to hear her speak. I babbled on about the timing of her waking, as if she had been awaiting her father’s arrival.

Richard displayed no elation, only tenderness as he removed the restraint from her left arm. I followed suit, gently removing the binding from her right arm. In just a couple of minutes, Alyssa opened her eyes again and repeated the same sequence.

“Hi Daddy, may I have my arm?” 

Richard responded gently, calming her as he spoke, “Hi Alyssa. I’ll be right here. You can move your arms now.” 

But once again, she closed her eyes and slipped into unconsciousness. For the next 3 hours, she could not be awakened by our voices or outside stimulation. Even though Alyssa was unconscious, the steroids were helping reduce the swelling in her brain. Her brain was trying to “wake.” This was not a smooth and gentle process. Every 5 – 7 minutes, Alyssa experienced bouts of agitation and then she would sleep for a similar period of time. Her agitation was not violent, but she was continually groping, reaching her arms into the air with no intent and turning from side to side in the bed. Because the restraints added to her discomfort, Richard chose to keep them off her arms and help her himself. He held her hands and arms and helped her turn. He spoke words of reassurance. It was similar to taking care of a small child. She was powerless to help herself. His goal was to protect her from accidentally harming herself and to keep her as comfortable as possible. Alyssa was totally unaware that her night was filled with relentless strivings. 

During this time, Dr. Love, the internist on call, entered Alyssa’s room, purposely to take Richard to see the MRI. 

Richard told me recently, “As I looked at the MRI, it felt as if I was in a fog with my senses dulled. It was undeniably the MRI of a brain bleed with increased intracranial pressure. I could see the tumor surrounded by a hemorrhage, and in that moment, my worst fears were realized. My last hope for an alternative explanation was swept away. The internist knew I was a physician and went into the medical details of Alyssa’s condition as we spoke. But I was barely coherent during our conversation and struggled to respond appropriately. This was my daughter’s brain. I knew this is how people die suddenly with metastatic melanoma to the brain. Understanding the risks Alyssa was facing, I had more doubt than hope that she could survive. All night long, I was just doing my best to keep it together.”

Richard planned to stay in the small ICU room with Alyssa. By now, it was around 2:00 a.m. I recognized my need for rest. I knew that Carson, Ariel, Matt and Hope would be arriving during the day. Andre would be returning in the morning. I wanted to be emotionally available for them. Plus, I reasoned, if Richard was up all night, he would need to sleep during the day. Taking a pillow and blanket from Alyssa’s room, I tried to rest on the carpeted floor of the ICU waiting room. But my adrenaline and the bright lights made it impossible to sleep, so I got up and went back to check on Alyssa. 

Alyssa’s symptoms remained the same. Her agitation continued. Her vital signs were normal. Alyssa’s charge nurse, still chattering and continuously in the room, encouraged me to spend the night across the street in the hospitality house for out of town visitors. I have a history of poor sleep under the best of circumstances and even though I was tired, I doubted I could relax enough to go to sleep. I decided to purchase a sleep aide, toothbrush and toothpaste at a nearby convenience store since my overnight bag was at Andre and Alyssa’s house. Richard, unwilling for me to be out alone in the middle of the night, went to the store for me. The nurse and I watched over Alyssa while he was gone. When Richard returned, he walked me across the street to the hospitality house and quickly returned to the hospital. 

Richard and I texted one another back and forth through the remainder of the night. At 2:55 a.m. I received this text message:

“She’s improved more; able to hold arms up, can touch nose to finger,
asked for water.”

Greatly relieved, I took 30 mg of melatonin, set my alarm for 8 a.m. and went to bed. 

Between 3:00 and 5:30 a.m., Alyssa was conscious, but the swelling in her brain continued to be a factor. She was still restless, reaching and turning, but her periods of calm were lasting for longer periods of time. Each time she woke, Richard held her hands and spoke calmly to her, helping her transition from restlessness to sleep.

At 5:34 a.m. I texted Richard: “How are you? How is Alyssa?”

Richard replied: “She’s resting better. You should be sleeping.”

Kim: “I slept for a good hour at a time. I’m going to sleep again if I can.”

Encouraged, I went back to sleep for a couple of hours. When I awoke, I called Richard. He said that Alyssa was finally sleeping peacefully. Feeling much better with a few hours of sleep, coupled with the knowledge that Alyssa was improving, I walked outside to retrieve the clean clothes hanging in my car. I was immediately struck by the beauty of the Oklahoma morning. There was a perfectly blue sky with only a few clouds in sight. The morning felt cool with a promise of fall in the air. A slight breeze caressed my face, so different from the usual gusty winds I experienced growing up in Oklahoma. I thought it ironic that the day could be so perfect when my daughter had just been diagnosed with cancer. But the beautiful day still lifted my spirits. I whispered a prayer of gratitude for Alyssa’s improvement and asked for strength to face the day. 

I touched base with Andre. He had also been in touch with Richard and knew that Alyssa was showing signs of improvement. Andre said he had rested for a few hours as well. That was more good news. He was going to spend some time with their young boys before leaving them with his parents for the day, but would be arriving at the hospital by midmorning. I also reached out to our extended family and friends with an update on Alyssa’s condition. I walked over to the hospital and bought Richard and myself a breakfast bar from the cafeteria and joined him around 9:00 a.m.

For the first time in many hours I saw Alyssa in the light of day. The blinds were still closed in order to keep as much light out of her eyes as possible, but I could see her clearly. She was sleeping peacefully and her color had improved. On the other hand, Richard looked haggard and acted numb with exhaustion. I asked him if he had gotten any sleep. He said that Alyssa’s agitation had been too great for him to rest and that the charge nurse’s chatter had worn on his last nerve. Besides exhaustion, I could see his heart was heavy. When pressed, he verbally expressed a small measure of relief over Alyssa’s improved condition, but honestly, he was so tired and afraid, he found it difficult to engage. Believing he would feel better after some sleep, I encouraged him to leave and get some rest. I assured him that Andre would be joining me soon. As Richard walked toward the hospitality house, I took my place beside Alyssa. 

Throughout that long night, in spite of feeling frightened and overwhelmed, Richard gathered his strength to act and speak with a calm he did not feel. He knew that until safely removed, the melanoma tumor in Alyssa’s brain was an unpredictable mass. It could start hemorrhaging (bleeding) again at any moment. His worries also involved the rest of her body. Likely, other melanoma tumors were lurking there as well. Were other major organs involved? Heaviest on his heart, as a physician, he understood something that I did not know. Statistically, even if Alyssa survived this traumatic event, with a diagnosis of metastatic melanoma to the brain, she had only weeks or months to live. 

And while Alyssa has no memory of this night, it is a night that Richard will never forget. 

Richard and Alyssa, 1988

 

This post is Part 7 of the story of how our journey with cancer began.  Read the rest of the story here:

Part 1: What Are the Odds?
Part 2: First Responders
Part 3: #Godlovesherbest
Part 4: The Sound of Silence
Part 5: Keeping Watch by Night
Part 6: When Words Matter Most
Part 7: Don’t Worry, Daddy
Part 8: A Mother’s Prayer

 

Photograph by Richard Harper, Sunflowers, Taos, NM