Friday Fighters

Friday Fighter: Naomi Black, Age 7

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Hello, Friends!

I hope you've had a fabulous week! #OperationSmiley is steadily moving toward 10 quilts, and I'm working away on the first Florida E Pluribus Unum Quilts.

Speaking of which, I will be adding today's Fighter, Naomi Black, to the Ohio E Pluribus Unum Quilt. Naomi is a seven year pediatric brain cancer survivor, after being diagnosed at only 7 weeks old. Her mama, Sandy, generously wrote a bit of Naomi's story for us:

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"Following an uneventful second pregnancy, Naomi was born via emergency cesarean section because her heart rate plummeted during an induced labor.  Upon arrival, she was whisked to the special care nursery for respiratory issues and an irregular heart beat.  While still recovering from the delivery, a neonatologist explained that Trisomy "of some kind" was suspected.  It was learned after about a week that she has Down syndrome, or Trisomy 21.

Once at home and nursing like a champ, Naomi was monitored closely for poor weight gain and a rapidly increasing head circumference.  As the sutures separated and her head became misshapen, an ultrasound was finally ordered.  It was at this appointment that the presence of a brain tumor was revealed.  I was told to take her to the local children's hospital emergency room immediately.  Naomi was only 7 weeks old.

It was pure chaos once we arrived, with countless physicians and nurses coming into our room to "examine" her.  The neurosurgeon was in disbelief that Naomi was behaving normally at home and had not had any seizures.  She was admitted for what became more than a week long stay, having a procedure first to relieve the pressure inside of her head, an MRI to see exactly what was going on inside of it, and then the tumor resection.

The surgery lasted nearly eight hours.  Naomi was under anesthesia and heavily sedated for a total of four days.  Once she was awake again, it was another chaotic roller coaster ride, with various complications, postponements of extubation, what seemed like hundred more doctors coming in to "examine" her, then finally a diagnosis - immature teratoma, also known as a "monster twin".  These tumors are made up of all of the components necessary to create another human being, but they are completely disorganized.  I learned later that Naomi's apparent popularity with all of the doctors was because of the size of her tumor.  It turns out that no one had seen a tumor that large (about a kiwi) in a patient who was so small.

Naomi had a couple of setbacks after being released from the hospital following the tumor resection.  Gratefully, she has not been hospitalized since she was about 18 weeks old, in September of 2009.

Life after tumor resection wasn't much different than it was for my other child, that is, until Naomi was about a year and a half old.  All types of delays started becoming apparent and she began to receive supportive therapy services from the county.  When she turned 3, her case was turned over to the public school system.  She's been in preschool since she was three years old, and is now finishing her second year of kindergarten.

Aside from services that she receives at school, Naomi also attends private therapy at a variety of locations, including both local hospitals.  She has also played baseball with the Miracle League and soccer with T.O.P. Soccer.  She will be eligible to participate in the Special Olympics when she turns 8 this coming May.  I think she's going to try bowling.

While everything sounds pretty fine and dandy, let me assure you that this life - life with disability, life after a childhood cancer diagnosis - is far from fine, or dandy for that matter.  It is challenging, highly stressful, and chaotic on a daily basis.  But it is also the most rewarding experience that I have ever had.  Sadly, her sibling draws the short straw most days, having to tag along to as many as three appointments in a day just as soon as she gets home from school.  That's just the therapy.  There are many, many medical appointments as well, that usually get worked into all of the school holidays and breaks, because there just isn't any other place to put them.

Naomi's diagnosis of Down syndrome has all but disappeared under the mask of the residual effects of the brain tumor.  I usually tell people the only way you'd know she has Down syndrome is by how stinking cute she is!  The tumor caused a partial paralysis on her left side, adding the label of cerebral palsy to her ever growing list of diagnoses.  It also caused a partial blindness, called hemianopsia, and another visual impairment called Cortical Vision Impairment.  Naturally, it also caused a lot of damage to her brain. While she is chronologically almost eight years old, developmentally, she is closer to 2 years old.  She continues to make progress, but it is slow.  She is an excellent teacher in the area of patience!

Naomi's early story was chronicled for friends and family on Caring Bridge.  If you'd like to take a look, her page name is Naomi Caroline.  I updated occasionally, when we have big news to share.  Most often, I update and share photos on her Facebook page, Naomi's Novel Neurons.  Feel free to like and follow that page if you'd like to offer encouragement and see her reach new goals."

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Thank you, Sandy! Your daughter is beautiful, and we are honored to know her story!

ACTION ITEMS:

1) Leave a message of encouragement for Sandy and Naomi on Naomi's page

2) Continue to share about the E Pluribus Unum Project so I can add more names to the quilts. Has your child fought or is he or she fighting childhood cancer? Email me his or her name and home state at hollyanne (at) quiltsforcure.org so I can include them!

3)Would you like to share your child's story? I'd love to feature him or her as a Friday Fighter! Email me at hollyanne (at) quiltsforcure.org

Trucker's memorial service is today. In his honor, remember:

LOVE BEATS CANCER,

HollyAnne