Earlier in the year, The Friends of Jaclyn Foundation reached out to Gordon State College and introduced us to Ansley Kate Register. Ansley is a bright and beautiful 9 year old, but suffers from childhood cancer. Last month, the Lady Highlanders adopted Ansley as an honorary member of the girls' soccer team.
Ansley was only 5 months old in early February 2009 when we noticed that Ansley's left eye was "dancing", or in constant movement. Although it was concerning, we didn't give it much thought until a week later when her right eye started doing the same "dance". At this point we started researching this condition, namely, Nystagmus and sought out a Pediatric Ophthalmologist. We visited the Pediatric Ophthalmologist the next Tuesday morning at 8am.
Upon examination, we were told to leave and drive immediately to Children's at Scottish Rite in Atlanta, and have a STAT MRI scan of the brain and orbits. We got to Scottish Rite and a CT was performed (since it was quicker) with the results showing a large tumor behind her left eye on the Optic Nerve. Blood work was drawn, IV was started and then the "fun" began.
We stayed overnight to have an MRI in the morning after Ansley had been NPO. So, early the next morning at 6:30am Ansley had an MRI with and without contrast which took about an hour. We got the results by 11am and they showed an Optic Pathway Glioma that was progressing into the Chiasm (the part of the optic nerve that separates the right and left optic nerve).
After speaking with a Pediatric Neurological Oncologist we have been told that this is indeed a type of low-grade cancer which would require chemotherapy, possibly radiotherapy and surgery. This type of tumor is inoperable because of the location and the fear of damaging the eyesight.
Ansley had a port-a-cath placed on February 27th and had her first chemo infusion the same day. She had weekly infusions of Carboplatin and Vincristine until approximately May 2010, she had 64 total treatments with this regimen. Just a few short months later we learned that the tumor was spreading throughout the Optic Pathway and not responding to previous chemotherapy. Ansley started a new chemo regimen, Velban in May 2011. After countless hospitalizations due to severe Neutropenia and tumor progression, Velban was discontinued in September 2011. Ansley's became septic with an infected port-a-cath the day before her 2nd Birthday. She was admitted to the hospital where we spent her 2nd Birthday celebrating with nurses and Physicians. She was discharged with a new port a week later. With new growth showing, a third regimen was suggested by her Oncologist and we quickly began this. The new regimen was called TPCV ((Thioguanine, Procarbazine, CCNU, Vincristine). Much of this regimen could be given at home under very specific protocol, for example, we had to mix the medications in our garage to prevent home exposure, administer is with protective gear on and give it through the night at specific intervals. I don't know if anyone can really explain the feelings you experience knowingly giving your child "poison" throughout their young life. Nevertheless, this regimen was completed in September 2012. Her port-a-cath was removed in June 2013 and she, of course, kept it. It's in a jar in our home right now.
Scans post TPCV treatment have shown stable tumors throughout (no new progression) so we are happy to say that Ansley has been off chemotherapy for almost 5 years! The tumors have caused complete blindness in her left eye with decreased vision in her right eye. She is also on Synthroid for Hypothyroidism caused by tumor location and more recently started on Nutropin (growth hormone) injections every morning to correct an imbalance in her growth hormone levels. She is 9 years old and only 42 lbs.
Despite being warned that chemotherapy would certainly cause growth and development issues, Ansley has overcome so much. She has been sick most of her young life, in and out of hospitals, emergency rooms, missing birthdays and major school events. She understands that the possibility of having to go back on treatment could be just around the corner and has no fear. She faces the challenges associated with vision loss, growth issues and ongoing medical appointments with dignity and strength.
We certainly do not know what the future holds for Ansley, but we know that God has a special plan for her. We feel blessed that she has been able to have a "normal" life for the last 5 years and pray that we are able to continue this for a long time.