CPN | Love Wins

Love Wins

I struggled with fear when my daughter, Lydia, was diagnosed with Rhabdomyosarcoma (an aggressive cancer).  She was seven and a half.  Over the course of two years I feared the disease as well as the treatment options.  I feared Lydia would lose her hair, the ability to have children and perhaps her life.  The thought of blood, needles, and feeding tubes made me dizzy.  Driving in Boston where Lydia received treatment terrified me.  But I couldn’t linger in dark emotions. I loved my daughter too much to let fear tear me down.  “For God has not given us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7”   I reminded myself.

Dr. Frazier first broke the news to Lydia’s father and me; then we walked back into our child’s hospital room.  The doctor sat on Lydia’s bed and said, “Lydia, the good news is that we know what we’re dealing with now.  The not-so-good news is that it’s cancer.  We’re going to do all we can to get you better.”

After Dr. Frazier walked out of the room, Lydia looked at me and said, “I should have known!”

“How?” I asked.

“Dah!” Lydia said, “Her white jacket said Dana Farber Cancer Institute!”  Lydia was no ordinary seven year old.

Treatment was set to begin as soon as possible.  First a port-o-cath and a stomach tube were placed.  Surgeons inserted a port-o-cath into her chest so chemotherapy could be easily given intravenously.  The feeding tube placed in her stomach provided a way to give Lydia medicine and to feed her when mouth sores resulted from proton therapy.  Doctors didn’t want the petite Lydia to lose any weight.

Cortisol pumped through my veins daily. Stressed and angry at God, I asked, “Why Lydia? How can I take care of her when I faint at the sight of blood?  How will I feed her through a tube when the thought of it makes me nauseous?  How will we get through this?”

He answered: There is no fear in love, but perfect love casts out fear. 1John 4:18

It took a lot of love and many prayers to overcome my fears.  Once released from the hospital after her first chemotherapy, Lydia met her visiting nurse, Sharon, the following day.  Sharon gave Lydia a shot (a blood building medicine).  Lydia’s treatment plan required these shots daily after chemotherapy for as many as seven subsequent days, until Lydia’s blood counts rose.  Chemotherapy takes a toll on blood counts.  

Lydia argued, screamed, squirmed and cried.  I held her while Sharon gave her the shot. Lidocaine placed on Lydia’s leg numbed the skin but did not assuage her fear of the needle.  

“I don’t envy you your job,” I told Sharon afterward.  She gave me a comforting smile.

“Tomorrow you give the shot,” she informed me.

“You’re kidding, right?” I laughed.

“No,” she assured me. “Insurance companies won’t pay nurses for daily home visits! They require that we teach the parents how to give these shots.”  Sharon taught me the basics as I watched in dismay.  I practiced on an orange over and over again. The following day my friend, Kristina, assisted Sharon in calming and holding Lydia as I did the impossible.  I stuck a needle in my little girl’s leg, pushed in the medicine in, and removed the needle without killing my child or fainting.

Proton radiation

 

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Shortly thereafter began six weeks of daily (Monday through Friday) proton therapy sessions at Massachusetts General Hospital (MGH).  My sister-in-law, Jackie, flew in from Minnesota and stayed a week for moral support.  She said “I’ll be happy to go to Boston with you, but I won’t drive.  I’m sure you can do it!”  I wasn’t…The first MGH appointment was set.  Up to this time in Lydia’s treatment, her father or friends of the family had driven us to appointments.

A driving phobia haunted me. I had lived only 60 miles outside of Boston for 16 years.  I loved Boston!  Yet not once had I ever ventured to drive into the city.  I would take a bus, a train, or a ride with a friend.  But I lacked the confidence to actually drive in Boston.  The streets confused me, the aggressive drivers intimidated me, and the number of pedestrians boggled my mind.

 

Tired of depending on others, I finally decided to drive. “Please, dear God,” I prayed, “help me! In the Bible you say ‘with God, all things are possible.’ Today I agree and say ending this fear is possible.”

I felt more secure on that first drive into Boston with Jackie in the car.  Lydia read an American Girl book in the backseat.  I was used to driving on I95, but once we turned onto I93 nerves got the better of me. I white knuckled it all the way to Boston…in the slow lane!  I didn’t feel capable of changing lanes in the bumper-to-bumper traffic, so I didn’t.  Jackie, my calm sister-in-law, held on for dear life while trying not to look petrified.  I silently prayed all the way to the hospital.  When we finally parked the car, I was shaking.  We had made it in one piece.

There were only 29 more appointments scheduled at MGH over following weeks.  City driving frightened me until (through daily observation) I discovered the golden rule of surviving the aggressive drivers of Boston: It doesn’t matter what driving rule you break, as long as you commit to your decision!  He who hesitates gets hit.

 

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More challenges presented themselves in the course of Lydia’s treatment as time progressed.  Out of necessity, I faced fear after fear.  Lydia was the one I turned to for inspiration and God was who I prayed to for strength.  I watched Lydia face her own fears daily.  She educated herself on pediatric cancer by reading Chemo, Craziness & Comfort: My Book about Childhood Cancer by Nancy  This book explained a great deal about cancer treatment and what to expect in a very child-friendly manner.  Knowledge lessened Lydia’s anxiety. “Mom, look at this page.  It tells about blood transfusions,” Lydia pointed out.

After a while, Lydia found ways to cope.  Every time Lydia’s port-o-cath was accessed (had a needle put into it) for a blood draw or chemotherapy, she would take control, explaining to the nurse what she needed.  “Wait until you see the ok sign before you flush with heparin.  I hate heparin and need to get ready,” she’d say before taking a deep breath to calm herself. She’d hold my hand, squeeze tight and give the signal in her own time.  This really helped her.

Once Lydia adjusted to taking medicine through her feeding tube, she said “Mom, you do it too fast.  I want to do it myself.”  So I’d hand her the syringe filled with anti-nausea medicine and Lydia would push the syringe handle down at a pace that suited her.  After that, she’d flush the medicine through with a syringe of warm water.   Each night before bed, Lydia insisted on changing the gauze under the feeding tube’s button where it entered her stomach.  “It’s my tube,” she said.  “I’ll take care of it.”  Methodically, she took out the old gauze and replaced it with a new square.  Watching Lydia take on these responsibilities mesmerized me.  Her maturity was beyond her years.

When Lydia’s older cousin, J.K., came to visit, Lydia made another very grown-up decision.  “Mom,” Lydia said, “Since J.K. is a minister, I want her to baptize me.”  

“Do you understand what that means?” I inquired.  She was not yet eight.  

“Yes!” She rolled her eyes at me and quoted John 3:16.  “’For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.’  I learned that at AWANA in first grade. I believe in God, Jesus and the Holy Spirit.  Believers get baptized in the Bible; you got baptized and so did Dad,” she said. Lydia knew what she wanted.  After she had a long conversation with her cousin J.K., Lydia was baptized.

Proton therapy did not shrink the tumor nearly as much as we’d hoped.  Lydia barely finished the first ten-month medical protocol when an MRI revealed a recurrence of the tumor.  Then we were forced to choose another treatment plan. And when that did not work either, another…

With every challenge love conquered fear.  God seemed to give us enough grace to get through each day and every challenge.  Lydia turned eight, then nine as she continued to battle cancer.  “I’ll always love you, Mom.”  Lydia told me one day as it seemed clear we’d soon face our greatest fear.

“And I will always love you too, Lydia.” I replied.  “You know in 1Corinthians 13:13 it says that ‘There are three things that remain—faith, hope, and love—and the greatest of these is love.’  So no matter what happens we have to have faith that our love will remain. And we will still have a future to hope for, whether it is here, or in heaven.  Even if you’re in heaven and I’m here, our love will not change or disappear.”  

I no longer have my beautiful daughter, Lydia, to hold onto, but I hold onto faith, hope and love.  Especially Lydia’s love.  It’s an emotion so much stronger than any fear we faced along the way.

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