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The Taylor Hulsey Story
A precious child is the greatest gift a parent can receive from God. There are no instructions, promises, or guarantees included. We begin our life journey with our children with optimism and hope for a great future. No one thinks anything bad is going to happen to their child. The reality is, things do happen. It's not until it's your own child that it becomes real. It became real for Taylor on February 22, 2007 when the words "cancer", "Brain Tumor", and my daughters name were all in the same sentence. It was the worst day of my life. I am her mother. I am suppose to kiss boo-boos and make them feel better. I was helpless against the invasion of my daughters brain stem by cancer. I couldn't fix it. I was in a fog. A state of denial at the news. Taylor had a life-threatening tumor. There were decisions to be made and procedures were of urgency. She was admitted to Scottish Rite-Childrens Healthcare of Atlanta (CHOA) the same day the tumor was discovered.
There are many types of brain tumors, all have different characteristics.
Taylor was unlucky in that her tumor is one that makes up only 9% of all children who are diagnosed with a tumor. It's
fast growing, located on the brain stem, which makes it inoperable and it has octopus-like tentacles that invade and
migrate the surrounding normal brain, which makes these tumors a major challenge to treat. A class IV tumor
requires aggressive multi drug chemotherapy and radiation. Surgery is not an option as it would result in severe
neurological impairment.
Treatment was set and implemented immediately. Taylor had Gamma Knife
Radiation and tolerated it fairly well. Hair loss was minimal, taste buds were lost and she was tired a lot of the time. When chemotherapy was started blood counts dropped, transfusions were needed also still very fatigued. No two day were alike for her.
For the most part things were going well until August 2007. Taylor's 9Th birthday was on August 14th and her "make a wish" was granting her a trip to Disney World for 5 days. We were scheduled to go August 31st. On August 29th Taylor was admitted back into Scottish Rite - CHOA for having
spiking fevers and complained once again of headaches. She had not had a headache since her
shunt was put in to reroute the brain fluid. She was admitted to Scottish Rite - CHOA on the Aflac Cancer
and Blood Disorder Center floor. Doctors started testing to see what was causing the fevers. What happened next, no parent could prepare for. Taylor dropped off to sleep at 5:00AM the morning of September 3rd. She had been feeling bad for a couple of days before. I had tried several times during the day to wake Taylor up. She did not respond. Nurses came and wend checking vital signs and administering her medications. I expressed my concern to the nurse at shift change that evening. She realized something was not right with Taylor and the neurosurgeon was called i to check her out. He discovered fluid pooling around the valve area on Taylor's shunt. She was immediately scheduled for emergency surgery to place an external catheter to pump the fluid off the brain. Taylor however had drifted into a comatose state and was placed on breathing support. She stayed in that state for eleven days. When she awake, she was a changed child. No longer could she speak, swallow, eat, walk and had little range of motion in neck and arms. A feeding tube had to be put in for nutrition purposes. She started to silently aspirate and pneumonia setup in her left lung. She was in ICU for 25 days. She was moved to rehabilitation for intensive therapy to overcome motor skills lost in the coma. After a 62 day total hospital stay, she was discharged to start outpatient rehab. This rehab was limited due to limited insurance coverage. The insurance would not allow what amount she desperately needed. Taylor began to have some respiratory issues which took her back to Scottish Rite - CHOA. Her swallowing was too weak to move her secretions. It became evident that a tracheotomy was necessary. It was scheduled along with a port-a-cath on Devembe4r 18th 2007. Taylor spent her christmas in ICU on morphine for discomfort. We went back to the rehabilitation floor for another round of therapy. We went home on January 20th, 2008.
I hoped for the best and feared the worst. When the fevers returned it was due to a staff infection in the trachea site. She was once again hospitalized. She was discharged on February 18th, 2008. Taylor's recovery journey is just beginning. She needs constant care and attention, but with intensive rehab therapy she could regain the skills she lost; learn to speak and swallow allowing her to eat. I will continue to advocate for her needs and help to get her needs provided.
Her little body needs time to repair and rebuild itself. Her oncologist will follow her closely checking blood counts weekly and MRI's every 3 months. Without any chemotherapy in her system, the tumor will either reduce, stay the same, or grow. Healing break is a watch and see time. Taylor has survived a year with this malignant tumor. Many children, not all, are not long term survivors. Taylor is deserving of survivorship.
I have discovered a renewed sense of fragility and beauty of life after my child's diagnosis of cancer. I appreciate life more and consider each day with Taylor a precious gift. I love her so much. I just want the best possible life for her.
There are many stories like Taylor's. Faith is helping us cope and push on. God is the ultimate healer. If you are reading Taylor's story, please include her in your prayers. Prayer Works!
As I was preparing this story of Taylor's
illness, she received another disappointment. Her tumor has began new growth progression. She is being put back
on chemotherapy immediately. Please keep Taylor in your prayers.
You can also fine Taylor's story at
http://cancerwarriors.org/Family_fundraiser.html
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