My Story

My life was much like anyone else’s, I was married at 20, working and going to school.  We had our first child when I was 26.  Collette was born a healthy 10 pounds 12 ounces.  I went back to school to be a nurse when she was 2 and a half.  In my second semester of nursing school Collette became sick.  She was diagnosed with acute lymphocytic leukemia.  Her world and mine would be changed forever.

I continued in nursing school because one thing that wouldn’t change was the need for two incomes to support our family.  My husband did not make that much and I only had one year to finish and I would fulfill my childhood dream of being a nurse.  It was hard to manage all of the doctor appointments, studying, hospital visits, nursing clinicals for school, child care and house work.  Sleep was illusive.  Somehow I managed to graduate in the top 10 percent of my class.  Collette was doing good but still receiving treatment for the A.L.L.  I got a job at the hospital where she was being treated.  With less then a year of chemotherapy left for Collette and me working as a nurse we thought it would be a good time to have another child.

When I was 7 months pregnant for our second child Collette relapsed.  The leukemic cells were found in her spinal fluid in a “routine” spinal tap.  The chemotherapy would start all over.  This time it was recommended that she have radiation to her brain and spinal cord to kill any hidden cells.  We went through the radiation.  Our second daughter was born and Collette named her Jessica.  The radiation caused a condition known as somnolence syndrome and only days after Jessica was born Collette slept for 3 weeks only waking to eat and go to the bathroom.  She woke up on the day of my 4 week check up with the doctor and said “I feel better today.”  We all got dressed and as we were going out the door Collette went into a seizure.  Once again her world and mine would be changed forever.  EMS was called.  We went to the hospital.  Collette had to be revived when we got there.  Still seizing, she was placed in Phenobarb coma on a vent and transferred to a larger hospital 25 miles from home.

That was the longest 25 miles I have ever driven.  She was in coma for 6 weeks until the seizing stopped.  The doctor said she had a reaction to the chemo and radiation and that the chemo crossed the blood brain barrier and went directly into her brain.  When she was brought out of the coma we didn’t know what would happen next.  We were grateful our beautiful little girl was alive and we would do whatever it took to keep her alive.  Little did we know what that would really mean for all of us.

What it came to mean for me was that Collette would forever be in my care.  When she came out of the coma she couldn’t walk, talk or eat.  She didn’t understand anything and her short and long term memory were gone.  I took her home and began the long road back to recovery.  At that time there were no brain injury centers.  I drove her to speech,  physical therapy and occupational therapy with 3 month old Jessie in tow.  I couldn’t go on driving back and forth to the hospital for chemo, taking care of Collette, Jessie and the house. I had to go back to work.  We were broke and my six month leave from work was up.  There was no internet at that time and I needed to find a solution.  The hospital was great and let me use the med library.  With Jessie and Collette in my arms I spent hours looking for the answer to help me keep all the balls in the air and manage my family.  UCLA was using a new subcutaneous catheter or port as it was called, implanted in the chest for giving meds directly into the heart on children.  The usual method was a catheter that went into the heart through a hole in the chest wall, but hung outside the body.  I didn’t want this because Collette could not go swimming or hang upside down on the swings, normal things kids can do.  Now that she could walk and talk again I wanted her to have as normal a life as possible.  I talked her doctors into using the port for Collette.  She was the first child in Michigan have the implant.  I went to the University of Michigan and was trained in giving chemotherapy.  For the next almost two years I gave her part of her chemo at home.

Our home became the base for treatment.  Every fourteen days she would receive four days of chemo.  In those four days around the clock I gave her chemo, sleeping on the floor next to her bed at night.  Then I would go back to work as a nurse for fourteen days. For the second round of chemo in her cycle she would go to the hospital for four days and I would stay with her.  Then I would go back to work for fourteen days and the cycle would start over at home.  The seizures the heartache and the worry continued.

Five years after the relapse Collette was cancer free.  No more treatment for cancer.  That was over, the memory loss and seizures continued.  With a brain injury and loss of short and long term memory teaching her anything took much patience and constant repetition.  The brain injury had affected her frontal lobe which controlled her emotions and behavior as well.  Social behavior, controllable rage and personal space issues were beyond her comprehension.  The stress of all of this was too much for my marriage and her father and I divorced.  I raised Collette and Jessie alone for the next 16 years.  It was tough but I never gave up on my child, my career or my dream of being a nurse and making a difference.

I have been a nurse for 25 years.  I worked as a registered nurse for 17 years in the hospital and home care settings.  Continuing my education, I went back to school and completed a Bachelors Degree in Business and Management. I left working in the field and began working in administration.  After working in a number of supervisory positions in private duty home care I came to recognize the need for quality training films for the nurse aide staff.  I looked for films to educate the staff and maintain accreditation standards for the agency.  There just wasn’t a lot out there.  As a single mother of an adult child with special needs I knew many families face the challenge of becoming a caregiver.  Without any experience in the fundamentals of care people face a daunting challenge as a primary care giver.  I wanted to make a difference and provide the instruction for both paraprofessionals and families in need.  FHL stands for Faith, Hope and Love. I’ve counted on these three things to get me through the tough years of providing care for my family and others entrusted to my care.

Today Collette has an apartment and a part time job.  She functions at a thirteen year old level and has a seizure disorder that is manageable with medication.  With the assistance of the state I hire caregivers to assist her with the activities of daily living and transportation.  Her sister Jessica is one of her caregivers.  Collette lives a full life and the three of us have a bond that is stronger then life itself.

Joan Kirwan R.N., BBA
Creator of FHL Productions