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

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Scoliosis Awareness – Cheyenne and Anthony

Medically Inspired Reading About Challenging Life Experiences (M.I.R.A.C.L.E.) Online Books is designed to build a community of health awareness.  We interview parents/guardians who understand the challenges of dealing with a child who has a medical illness, condition or circumstance and manages to cope with day-to-day activities.  Although Scoliosis awareness ended in June, we want to share this special story.  We hope that other parents and families will be educated and inspired and strengthened with the stories we share.

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  • How many children do you have? What are their names and ages?
    I have 3 children. Anthony 7, Cheyenne 5 and Cienna 2 years old.
  • Which child is ill?  Tell us about their illness.
    Anthony and Cheyenne both have Antley Bixler Syndrome, severe Scoliosis and bi-lateral hip dislocation.  Cheyenne also has severe Lung Disease, right diaphragm that’s paralyzed and CPAP dependent during sleep.

 

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  • Tell us about their personalities?
    Cheyenne is extremely shy, an observer if you will.  She keeps to herself, but she just has this smile that lights up a room.  Anthony is very outgoing, with a larger than life attitude.  He’s very independent and loves trying new things.  They both are fighters and NEVER once has said Why me?  They are so brave and inspire so many.
  • Share how this situation has affected you and your family.  How and what has been your biggest challenge?
    It affects our family in so many ways; hospital stays, financially, out of town appointments that we just can’t afford, stress from being away from my other kiddos during hospital stays, Cheyenne and/or Anthony missing school when they have surgery.
  • What challenges have you overcome?
    Anthony has overcome 15 operations, his last one July 2014; Cheyenne has fought for her life since she was born and had her 1st surgery last year due to major complications.  Ultimately, there are just too many obstacles to list.
  • When and how did you explain to Anthony and Cheyenne about their illnesses?
    I haven’t quite gotten there yet.  They do know they are Special and a little different from other kids but they are treated normal.
  • To other parents dealing with the same or similar illness, what advice would you share?
    No matter what let your child know that they are loved and support them 100% in whatever they choose to do.

 

Crystal Leyba

Fresno, CA

 


 

Thank you for sharing your story with us Crystal, your journey displays that of courage, confidence and endurance and I am sure others are encouraged as they read your story.  For any readers interested in knowing more about Crystal’s journey, please visit https://www.facebook.com/theadventurousjourney.

If you know of any other parents/guardians we should feature in upcoming topics, please have them email us at ContactUs@miracleonlinebooks.com.

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Founder – Pat Day-McCray

Alicia Y. Day was my very first child, born weighing 6lbs 4ozs and was quite healthy.  I was looking for a symbolic sign on her body to possibly assist me in naming her; no symbols were identified.  For the first week of her life, we simply called her “Baby Day.”  I soon decided to name her Alicia Yvette Day, after a dear grammar school friend; I have always been happy with my name selection.

 

“The Unexpected”

Alicia was only a few months old when she began having sporadic episodes of diarrhea.  There were times I found myself taking Alicia from one emergency room immediately to another emergency room; each time I was told by physicians “it is just a virus.”  By the time Alicia was eleven months old, not only did she continue having sporadic episodes of diarrhea, she began vomiting too.  Even though Alicia was seen by her primary physician and was up to date with all her infant exams and immunizations, the sporadic episodes of diarrhea and vomiting continued.  At times these episodes would be so aggressive until every sheet and comforter in our home was soiled from diarrhea or vomit; and we would have to lie on a bare mattress covered with bath towels.  I began taking her to other children hospitals hoping they would discover the problem

One day I received a call from Alicia’s babysitter saying, “Pat, something is wrong with the baby.”  I left my job immediately and once again rushed her to the nearest emergency room.  This time when we arrived Alicia was still very lethargic (sluggish and tired).  She was admitted for observation.

By morning, Alicia was rushed to the Pediatric Intensive Care Unit (P.I.C.U.) where everything that was, took a change for what was to come.  The doctors were working to stabilize her vitals, as they had no idea what was happening with her internally.  By 3:00 p.m. Alicia had a cardiac arrest and was sure to have another one if the problem was not identified and resolved.  Exploratory surgery was her only option at this time.  However, her vitals were too unstable and in spite of the large amounts of fluids Alicia was receiving, she had not released any urine.  That’s where prayer interceded in the situation and God began to work things together in our favor.  It seems within moments of making my humble, prayer request to God, her vitals stabilized and she began to release urine.  The surgery was performed and as my previous blog (May 17, 2014) stated, over 90% of her intestines was removed.

 

“I’m Grateful”

After spending over 6 months in the hospital, it became home for Alicia.   Often when I arrived at her room, she would be gone.  Several of the nurses frequently came by and picked her up to walk to the cafeteria, gift shop or perhaps lay a blanket on the grass and let her enjoy the outdoor breeze and sunshine.  In so many ways, she became the hospital baby…known as “Baby Day.”

Halloween has never been an event that I celebrated.  After denying Alicia’s participation to dress up and partake in the hospitals celebration, I was approached by individual nurses, as well as Alicia’s primary doctor asking if I would make the exception and allow her to participate.  Eventually, I gave in and designated that day to Alicia and the nursing staff.  Well, that went over fine with them; as one of the nurses brought in her niece’s gold turtle neck and complete princess outfit, while another nurse attempted to comb her hair.  Alicia had a great time!  Unknowingly, they provided me with an everlasting memory.

 

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 “The Journey”

I spent EVERY night in the hospital just to be near my daughter (with the exception of very few nights at home).  I slept in a shared visitors lounge, curled up in a straight-back chair.  My daily routine consisted of going to my job (another department within the same hospital), church and returning to the hospital.  I lived out of a garment and overnight bag; which I packed weekly when I would go home.

A treatment plan was developed for Alicia and caring for her became somewhat of a routine.  When things were good, they were good.  But, when things were go bad…they were bad.  Alicia and I both did a lot of adjusting with our new life; Alicia more so, than me.  Alicia eventually overcame the desire to eat and carried on as if she did not see food.  For me, I learned the true meaning of patience, commitment, family and real friendship.

Alicia’s first night on “the floor” (step down from P.I.C.U.) after being discharged from P.I.C.U. was one of the roughest nights we had experienced in a long time.  Her colostomy bag began leaking and needed to be changed.  With the location of her incision and the positioning of the colostomy bag, the floor nurses who were new in caring for her did not know how to secure the adhesive stoma properly around her incision.  The adhesive stoma was removed and replaced on her skin at least 5-6 times, causing pain and rawness to her skin.  Finally, a nurse from the intensive care unit came out and was able to properly secure the adhesive stoma and colostomy bag.  That was the second time I sat by watching and feeling extremely helpless as others tried to help Alicia.  I felt the pain of the adhesive stoma being removed over and over and over again.  As I watched my daughter struggle and cry from the pain of the nurses’ trial and error; I made a sound promise to myself and to Alicia.  From this night forth, I will learn everything I can to take care of you, I will not depend on anyone, except God.  Later as I comforted Alicia, I told her of my promise and assured her that nothing and no one on this earth was more important to me.  I prayed that Alicia understood me and would somehow trust and depend on me as I put my trust in God.

I learned how to be a strong, supportive mom for Alicia, allowing her to only see strength and confidence.  In spite of the situation she was handling, I wanted her to remain a child as long as possible, remain care free as any child could under the circumstances.  I realized and accepted that the condition existed and the only thing left to do was to deal with it on a day by day basis.  Most of all, I never gave up hope and the expectation of her complete healing.

 

“Parental Collaboration”

During Alicia’s hospital stay, I met and bonded with lots of parents that had children in P.I.C.U.  The parents always returned back to the hospital to bring gifts to Alicia, whether it was stuff toys, handmade blankets or simply bring me food or take me to my favorite restaurants.  I enjoyed talking with like-minded parents and encouraging them during their challenge, it gave me purpose.  Speaking with other parents was a responsibility that I took upon myself; but most of all, I thoroughly and passionately enjoyed every moment.

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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.


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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!

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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.


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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.”

 

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“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.

 

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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.