M.I.R.A.C.L.E. Online Books

Building passion through compassion…


Leave a comment

Brain Tumor Awareness Month – Medullablastoma

My name is Alyssa and I am the oldest of 3 siblings.  I am delighted to share my sister’s journey and the impact it has made to our society.

My younger sister Elizabeth was born January 17, 1996.  She was a wild child from the beginning and took to walking like a fish to water by the time she was two years old; it wasn’t long after that she began running.  One day she fell, of course this wasn’t the first time she had fallen; but this fall would mark the beginning of a life change which neither of my parents saw coming.  It would be the first of many falls to come.

On January 20th a few days after Elizabeth’s second birthday, she stopped running and a week later she stopped walking.  She rapidly began to digress and returned back to crawling.  The happy, wild child we once knew was converting to someone else entirely.  She became very sickly and was unable to contain anything she ate and she would cry throughout the day.  All the developed cognitive and motor skills Elizabeth developed in the first two years of life had disappeared.

My parents took Elizabeth to the hospital where she was admitted and a series of thorough testing began.  The tests concluded that Elizabeth, at two years old was diagnosed as having Medullablastoma, a high-grade tumor located on the cerebellum.

“Medulloblastoma is relatively rare, accounting for less than 2% of all primary brain tumors and 18% of all pediatric brain tumors.  More than 70% of all pediatric medulloblastomas are diagnosed in children under age 10.  Very few occur in children up to age 1,” as documented by American Brain Tumor Association.

Elizabeth was diagnosed early enough to have her tumor surgically removed with very little chemotherapy and radiation; overall, she had an extremely positive outlook.  Her recovery allowed her to return to the wild child we once knew.

Unfortunately, Elizabeth’s tumor returned two years later when she was four years old.  This time, the tumor had spread to her spine.  Radiation and chemotherapy did not guarantee my sister’s chance of survival.  It was noted, if she did survive she would have developmental issues accompanied by life challenges.

After a week of tears and frustration, my parents were offered a chance to participate in an experimental stem cell transplant study.  Elizabeth became Alabama’s first child to survive a stem cell transplant.  The stem cell transplant replaced the damaged cells in her brain and spine.  This method allowed a faster recovery time with less chemotherapy and radiation.

Because of the stem cell transplant my sister received, Elizabeth was able to survive her life threatening illness.  Life has not always been easy; despite the fact that she has physical and mental developmental issues, and hearing loss in both ears, to those of us that love and value her being, she is absolutely perfect!

Today, Elizabeth is eighteen years old, alive and extremely happy; she will be graduating from high school in 2015.  Even though Elizabeth does not realize it, she is a hero.

Overall, many lives have been saved because of patients like Elizabeth and families that support research.  Research has provided patients and families dealing with Medulloblastoma a variety of medical options, along with stem cell usage.  Children can receive stem cell transplants with the possibility of beating cancer and tumors; ultimately allowing some to live without many side effects caused by chemotherapy and radiation.

I share my sister’s journey to let other children and family members know they are not alone.  There is a light at the end of the tunnel!

____________________________________________________________

M.I.R.A.C.L.E. is dedicated to bringing children, families, physicians, educators and communities together.  We are creating a community of health awareness along with allowing families to share their stories of love and endurance.

If you like this content and would to read more, please click here to join our email listing to receive monthly updates and events associated with M.I.R.A.C.L.E. Online Books, LLC.

Advertisements


Leave a comment

Founder – Pat Day-McCray

The first post of M.I.R.A.C.L.E. is here to introduce the founder, as well as the inspiration for this wonderful community, Pat Day-McCray who shares with us the story of her daughter Alicia.

Hello,

My name is Pat Day-McCray and I am a ‘parental survivor,’ after losing (at the time) my only child, to Short Bowel Syndrome.  My daughter Alicia Y. Day died at the age of three due to complications related to her illness.

 

“The Unexpected”

As much as I want you to know who I am, it is more so important for you to know my daughter, Alicia Y. Day.  At the age of 1-1/2 years old, it was discovered that Alicia was born with an intestinal duplication.  At the time of the discovery, over 90% of her intestines were found to be gangrenous and had to be removed; leaving her with a colostomy bag hanging on her side.  Without her intestines, she was no longer able to eat food or drink beverages; she had to be fed intravenously.  In order for Alicia to receive the daily nutrients needed to survive, she was connected to tubing that hung from an I.V. pole for 24 hours each day.  By the time she was a little over 2 years old, she was reevaluated and was gradually weaned off her feeding machine; eventually Alicia was able to be taken off her machine for 8 hours each day.  This allowed her an opportunity to run and play (safely) just as other children her age.

 

The journey with my daughter was like traveling through “The Land of the Unknown.”  We never knew what to expect as each day, week or month had its own adventures.  The nutrients Alicia received caused damage to her liver which eventually led to her eyes becoming jaundice.  In spite of dealing with the unknown, I never felt alone.  I had Christ as my navigator and He allowed us to sail through many rough storms as I trusted in Him, and relaxed in His word.  During the last 10 months of Alicia’s life she was comatose, and quite a fighter; as she surprised the medical staff on several occasions by taking breaths on her own.

 

“I’m Grateful for Our Time”

Despite all of life’s changes, I still remember Alicia as a picture of health, full of joy and quite comical.  God allowed me to embrace my beautiful, happy baby girl for a little over three years.  Alicia gave me something that no other aspect of my life could have possibly given me “someone and something to fight for.”

 

20140321-113521.jpg

 

“The Journey”

I was in my early twenties when Alicia became ill.  I knew of no resources that could help me explain to my daughter the new life we were expected to live.  Not to mention, I needed resources to help me understand our new life, let along explain to my child!  Doctors gave me life-changing information that sometimes had no options.  I had to “woman up” and make what I thought to be best life-saving decisions based on the medical information given to me.  I realized quickly, this circumstance was not about me; everything was about Alicia — and I needed to make the best decisions humanely possible.  Along with making decisions, it was necessary for me to provide a positive environment for Alicia, regardless of the circumstances presented to us.  I became Alicia’s #1 cheerleader in everything she did or was exposed to; I became the supportive, encouraging force behind every finger stick or major surgery Alicia received.

 

During the early stages of Alicia’s hospitalization, I recall one of the worst, moments was being told “Eat in front of her, she needs to get use to seeing other people eat food.”  Although I understood the intentions of the medical staff, they wanted me to accept the reality of this new situation.  However, their strategy did not address Alicia’s emotional challenge.  Unknowingly, I feared my own words; or better yet, lack of words to communicate to my 1-1/2 year old daughter.

 

I was clueless in how to explain to Alicia that she would never be able to eat food again for the rest of her life.  How could I explain to a 1-1/2 year old that she could never eat or drink again?  How is it possible for any parent to explain such a life changing medical situation to a child as young as Alicia?  If I had answers to these questions, or perhaps if communicative resources were made available to me, I could have focused the majority of my attention on dealing with Alicia’s physical health, versus being troubled about her emotionally.

 

What would you have done?

 

Alicia was accustomed to sharing family meals with me; now, here I am on a mission to hide and prevent her from ever seeing people eat again. Needless to say, that was truly an impossible task!  I was up against hospital food deliveries to other patients, or people simply walking around eating snacks or drinking beverages.  Alicia would sometimes say, “Mommie, what do I smell?”  Then I would find myself closing her hospital door to suppress the aroma of food.  Watching television was another huge challenge, as television commercials displayed food and restaurants continuously.  One of my most heart-breaking moments was seeing Alicia’s eyes and thoughts fixated on watching food commercials, then I would see her very slowly, lick around her entire lip (from side-to-top, to side-to-bottom-to-side).  That was emotionally painful for me to see.  It hurt just knowing that she remembered food and had a desire to have food.  As a parent, I wanted so badly to protect her from ever seeing the substance that so many of us take for granted:  “Food!”

 

Alicia’s first hospital stay was, 6 months, 3 weeks and 4 days before being discharged.  In order for me to take Alicia home from the hospital, the nurses had to teach me everything about her care as well as familiarize me with warning signs that I should be concerned about.  I learned all that I could about my daughter’s condition and whatever I could do to prevent any additional illnesses or setbacks.  My experiences in caring for Alicia allowed me to develop a keen and sharp eye to various medical circumstances as they related to her care.

 

In spite of all that I learned, I never learned the correct words to explain to Alicia that she would have to endure the rest of her life without food.  The below questions have always been in my thoughts, and I am sure other parents have entertained the same or similar questions.

  • How do I explain this condition to Alicia?
  • How do I explain this new life style to Alicia?
  • How do I explain to Alicia the multiple surgeries she encountered?
  • How do I explain to Alicia the feeding tube that she would be hooked up to for 16 hours per day?
  • How do I explain to Alicia that she can never intake food or beverages into her mouth again?

 

Alicia saw me as her protector from danger, hurt and harm.  I was the person she ran to for safety in any given situation; whether it was fear or confusion, I was her safety net.  As parents, we are placed in our child’s life to protect, guide and instill moral values in their lives.  Although we embrace this huge responsibility with and for our children, we are not Gods!  We learn as we go and do the best with whatever knowledge we obtain.

 

“Parental Collaboration”

As a parent and a caregiver of my daughter, I soon realized that other parents and I shared a special bonding; a bond that is unique from our immediate family members and close circle of friends.  We have embarked upon a journey that only personal experience can relate to.

 

______________________________________________________________

M.I.R.A.C.L.E. is dedicated to bringing children, families, physicians, educators and communities together.  We are creating a community of health awareness along with allowing families to share their stories of love and endurance.

If you like this content and would to read more, please click here to join our email listing to receive monthly updates and events associated with M.I.R.A.C.L.E. Online Books, LLC.