Angelica (Angel) Hurley was by all accounts a normal healthy 33 month old toddler until a few days before New Year's Eve 2006 when she started to experience weakness in her right hand. Angelica could not open her right hand. Angelica’s mother Rebecca asked if anything hurt. Angelica said no; it was then that Rebecca noticed that her daughter was unable to move her right arm normally.
Concerned for obvious reasons, Rebecca called Angelica’s pediatrician’s exchange number. She spoke with the on-duty nurse who told Rebecca that she was over reacting (a disconcerting, reoccurring response to parent’s concerns). Rebecca tried to tell herself it was a pulled muscle – anything simple but she knew in her heart that something was very wrong.
Rebecca and her husband waited 2 days to take their child to the ER at St. Louis Children’s Hospital and within minutes they were talking about a stroke. A stroke??? She was only 33 months old! Rebecca was so confused because she was not aware that children even had strokes.
That was the beginning of the Hurley’s new life.
A CT scan followed by an MRI showed a large tumor in Angelica’s brain; it also showed that she had SURVIVED a major stroke. It was a devastating diagnosis. The Hurleys were told that Angelica, more than likely, had a good tumor in a very bad place.
On January 2nd 2007 a craniotomy and resection was performed removing 99% of the tumor. The tumor was the size of a racquetball in Angelica’s left temporal lobe pushing on her brainstem and thalamus. Angelica also had quite a few minor strokes during the surgery. Rebecca remembers seeing the MRI right after the surgery where medical staff pointed out the various stroke locations to her. Rebecca doesn’t remember how many there were.
Angelica experienced more right sided weakness after the surgery. The family stayed with Angelica in the hospital for 8 days before she was sent home to recover. She could not walk for the first week but slowly regained her strength. Angelica also had some issues with language and word recall. Instead of crying for Momma she would cry out Meow.
The pathology came back that the tumor was a JPA, juvenile pilocystic astrocytoma, with some PMA, pilomyxoid tumor. The tumor was between a grade 1 and a grade 2.
On Feb. 2nd 2007 another MRI was performed that showed the tumor to be growing back fast. The tumor had wrapped itself around one of Angelica’s main arteries. The tumor was not behaving like the low-grade tumor it was.
Angelica had a port-a-cath placed on Feb. 9th 2007 and chemotherapy was started the same day. She was on a vincristine and carboplatin chemo regimen for 15 months.
Since that time Angelica has only had stable or shrinkage on her MRIs!
She ended treatment in May of 2008 for the brain tumor. In February 2009 Angelica started having myoclonic seizures. She is currently on medication that successfully controlling these seizures.
Today she is over the main hurdle of treatment. A tiny part of the tumor continues to be wrapped around her artery, but it has been stable. Angelica remains a high risk for subsequent strokes.
Angelica started kindergarten this year with physical disabilities. She is still dealing with the after-math of the stroke and the damage that it caused.
Angelica is in Occupational (OT) and Physical therapy (PT) once a week for the right-sided hemiparesis. She has come along way since the diagnoses but she still can not use her right hand. The stroke has affected the entire right side of her body. Her hand, arm, and leg are still very weak and she experiences some facial droop but it isn’t that noticeable. She wears an orthotic leg brace to help with the foot drop and she will be starting restraint therapy on her arm/hand this summer.
Rebecca shared a recent incident while Angelica was attending kindergarten. Angelica’s Physical Therapist had called to inform Rebecca that Angelica had broke down in tears at the beginning of her therapy session. Angelica participates in PT while the rest of her class goes to recess; she typically joins them for the last 10 minutes outside. On this particular day in November, Angelica wanted to go outside and play with her friends. The PT therapist said no problem, they would go outside. Angelica kept crying; she didn’t want her friends to see her with a physical therapist.
She wanted to fit in
She wanted to be “normal”
We must accept that Angelica never will be “normal’. She will instead be known as one of those who are EXTRAORDINARY, an individual who without knowing it fights a battle that would bring the strongest of us to our knees. She is a SURVIVOR!
Angelica is a sweet, beautiful, strong little girl. She amazes her mother and father (web administrator’s prerogative – edit to add EVERYONE) everyday with her resilience and love of life.
For these reasons (and more), Angelica Hurley is our January 2010 Stroke Hero of the Month!
Angelica’s Caring Bridge site
http://www.caringbridge.org/visit/angelicahurley
Pediatric Brain Tumor Foundation
http://www.pbtfus.org
What is a JPA Tumor?
http://emedicine.medscape.com/article/341293-overview
What is a PMA Tumor?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1480592/
