Hayley is a bright, energetic, kind, and sensitive 12-year old who brings a smile all who know and love her. She sings, acts, and plays golf. She loves the Lord and trusts in him completely.
Hayley's health story has been going on for over a year. She had been back and forth to the doctors at CHOP for over three months trying to find out why she was feeling ill, looking pale, having an abnormally fast heart rate, high blood pressure, high calcium and parathyroid hormone, low potassium, and low body weight. Multiple tests and procedures were performed; Hayley was put on medication for her heart rate and blood pressure while doctors tried to find out what was causing her health issues. First her kidneys were thought to be her problem and then it was her endocrine system. Multiple tests, including genetic testing eliminated those issues. In the interim, Hayley lost her appetite and started having insomnia and back pain.
She was admitted to CHOP in late Jan. 2011 and spent a week in the hospital where her pain was treated with drugs and she received an NG feeding tube and was released with the doctors' assuming she had severe anxiety. She was admitted to CHOP again 4 days after her release on 2/9/11 with double vision. A CT scan of her head noted hydrocephalus and a tumor on her pineal gland which was confirmed by a further MRI. She was scheduled for brain surgery (ETV) on Fri. 2/11 to relieve the pressure on her brain and then a craniotomy on Mon. 2/14 for resection and biopsy of the tumor. A subsequent MRI of her spine indicated 10-15 lesions on her spine. Thursday 2/17 Hayley was diagnosed with a high risk pineoblastoma with drop metastases in her spine. Hayley's treatment will be performed at CHOP and will follow the St. Jude's protocol (SJMB03).
Her treatment will require harvesting of her stem cells prior to about six weeks of daily (Monday-Friday) full craniospinal radiation including two weeks of proton therapy. Hayley left each day at 5:45 A.M. for her daily radiation treatment and usually had extra appointments at CHOP after her radiation, so she got home in the afternoon each day. It was extremely tiring for this beautiful little girl. She had for radiation until the end of April. She now has a planned six week break with many additional tests including an additional spinal tap, new MRIs, vision tests, EKGs, echocardiograms, hearing tests. On June 6th she will start a 5 month high dose/high frequency chemotherapy process involving receiving chemotherapy inpatient for about three weeks and then receiving two million of her stem cells during a rescue process thereafter each dose. Depending on how her white blood cell count is and whether or not she has a fever or infection will determine whether she can go home for the 4th week of the 28-day cycle during her five months of chemo.
We pray that God will heal Hayley fully and that she will be an inspiration to others who will come to trust in God from her testimony of love and faith.