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Palliative Care Patient Stories

Ginny’s Story ~ Fighting to Feel Good

It’s been eleven years, but, that day is as clear in my mind as yesterday. 
Ginny, the youngest of four children, was diagnosed with cancer. She was four, in the final month of pre-K, getting ready to enjoy summer vacation with her siblings. She hadn’t been feeling well and seemed to have a virus, but there was a flu bug going around, so it wasn’t unusual. It was a Sunday morning and it was unusually hot for the beginning of June so we decided to go to grandma’s for a swim. As I was undressing her to put on her swimsuit, I had noticed a lump, the size of an egg, under her arm, that hadn’t been there that morning. 
While everyone looked and assumed it may have been a large bug bite, something told me it wasn’t going to be that easy.
My mother and I brought Ginny to the emergency room, while my husband and other three children waited at home.
After several needle pokes, x-rays, scans and hours of waiting, two doctors came walking into our room. They had a look on their faces that made my stomach turn before they even spoke. And then they spoke about all the tests that had been done and I can’t remember everything that had been said because, the word “cancer” came out of their mouth and that was all I heard. I left the room to gather myself together; I didn’t want Ginny to see me fall apart. In my mind cancer meant death and how could I act calm knowing my child had cancer. 
The first few days were spent in the ICU. Ginny had an IV in each hand and each foot. Her type of cancer was leukemia, but hers was a rare aggressive leukemia in her T-cells, the same cells that fight to keep your body healthy, were now cells that were taking over Ginny’s body making her sick.
Three weeks in the hospital with high doses of steroids and tests and finally she was able to be sent home. We were handed a “road map” which contained the next 101 weeks of radiation, chemotherapy, schedules and tests needed. 
When we arrived home, our normal family was no longer normal. The summer vacation plans of camping, swimming, amusement parks and more, became a summer of hospital trips, and watching a four/five year old so weak and sick she would sleep most days, we watched as her hair fell out and spent our family fun in hospital playrooms. Instead of her siblings having friends come to our house, we had art therapists, music therapists, and child life specialists because you can’t have germs around a child whose immune system is suppressed.
Our lives became focused on keeping Ginny alive and healthy. After two years, treatment had finally ended. And Ginny was cancer free! Life could be normal again. Or so I thought.
The next eight years were not easier, my husband and I divorced, Ginny had learning disabilities, she was growth hormone deficient requiring daily shots, she had cataracts in both eyes and didn’t have the energy others her age had. My other three children had/have social anxiety and depression. And I have PTSD, and every bruise, fever, ache, or complaint any of my children had, brought me back to “that day.” And all my fears would resurface. 
And that brings us to 2015. Just three weeks after I remarried, when life seemed to be normalizing and going well for not only me, but also Ginny and her siblings as well. 
Ginny had a yearly oncology appointment. I had noticed, in the past several months that Ginny had been more fatigued than usual, in fact I had mentioned it at a past endocrinology appointment but it was put off as weather change and/or puberty. I had also noticed she had been moody, and had also been getting headaches off and on. But the day before this appointment her teacher noticed her dragging her left foot slightly.
Her oncologist looked her over and sent us straight to the hospital for an MRI. And once again as the doctor came to talk to me after the MRI, the look on her face I’ll never forget. And this time, Brain Cancer! We were supposed to be celebrating 10 years of cancer free, but instead the worst possible cancer diagnosis was given. 
Ginny had been fighting cancer her whole life. And this cancer in the past year and a half has left her wheelchair bound, with high blood pressure, diabetes, and constant aches, pains and fatigue. Ginny turns 16 this year and knows no other life that fighting to feel good. In her mind this is normal. In her mind she will get better again. In her mind she will go to school, swim, walk and be normal again. In her mind she will become a nurse and help others like her. In her mind she will someday get married and have children of her own. She’s even picked names for them. 
I wish I could have her mind, because in my mind I spend every ounce of every day praying for a miracle, looking for a cure and preparing myself for that heart wrenching day she takes her last breath.
Ginny is a hero in my eyes. The suffering she has endured for the past 11 years, she still smiles, she still laughs and she still hopes! I’d have given up long ago but she still fights!
11 years ago I had no idea childhood cancer existed. Now I’ve lived with it and see there are many, many others who do as well. 

Written by Michele Lloyd, Ginny’s mom


 “I really didn’t think anyone could help me until Home Connections became involved. Dr. Kerr visited me and gave his undivided attention, focusing on my symptoms and less on my disease. I finally feel like I will get back to normal one day… When the nurse from Home Connections came in, I felt so much relief that she was able to help communicate with all of my doctors. It’s very stressful to have to do all of that on my own.

I cannot thank Home Connections enough for working to get me a new mattress. I have not slept more than an hour in 9 months and am now able to sleep multiple hours at a time because of my comfortable bed!”

-Kim, Palliative Care Buffalo Patient


Dave_Stanfield.jpg"They monitor my wife often. It gives us confidence that we know how she is doing."
~Dave S. 

 

Regina-Markowitz.jpg"It has helped me a lot feeling more confident that there is someone I can call.
They help me by coming to the house."
~ Regina M. Palliative Care Buffalo Patient 


Ray-Gibbons.jpg"I have learned things about my health that I did not know before as a result of this program."
~ Ray G. Palliative Care Buffalo Patient