Raegan was diagnosed with retinoblastoma at the age of 22 months. Just four days before that, her dad, Dan, noticed that he could not remove “red eye” from some recent family photos. It appeared that Raegan had a hazy white spot on one of her eyes. After meeting with the pediatrician on Monday, and a pediatric ophthalmologist on Tuesday, the heartbreaking news that our sweet Raegan had retinoblastoma was relayed, and she, Tracy, and Dan were referred to St. Jude Research Hospital in Memphis. Her left eye was removed in July 2013. She undergoes Exams under Anesthesia (EUAs) every 10 weeks and MRIs every 6 months. She has been a trooper throughout this whole process. She handles everything so well. She hands her arm to the nurses when she needs her blood pressure checked, lifts up her shirt for the nurses to check her breathing, etc. Raegan loves to play outside, ride her bike, dance, crafts and playing with her baby dolls. She is very funny, independent, talkative, carefree and loves to get dirty.
Luke was diagnosed with retinoblastoma eye cancer last year at the age of 14 months. He received intra-arterial chemo therapy treatment at the Yale New Haven Hospital in New Haven Connecticut. Luke’s treatment was truly miraculous and he was even featured in the “Breakthroughs” annual review magazine for Yale New Haven Hospital. Luke has regular exams under anesthesia at Yale and he has not shown any new tumors or regrowth since February. Luke is a happy and energetic 2 year old and loves spending time with his family. He has two older siblings (Jack 6, Cynthia, 4) and a younger brother (Finn 6 months).
On July 18th, 2011 our sweet baby girl Violet was diagnosed with Retinoblastoma, a very rare form of pediatric cancer that develops in the retinas of the eyes.
Violet has gone through CT scans, MRIs, surgeries, having a port-a-cath, blood draws, injections, chemotherapy, exams under anesthesia (EUA) and more. All of this began for her at just 7 months old.
After genetic testing, it was found that Violet has the RB1 gene. This means that not only is she susceptible to tumors occurring in her eyes, but she also has a higher probability of tumors occurring in other parts of the body throughout her life.
Violet was also found to have a small deletion in chromosome 13. This deletion is known to cause many issues including growth and developmental delays, autism, retardation, low muscle tone, kidney failure, seizures, blood clotting, sensory processing disorder and more. Violet is showing none of these! Praise God!
Violet completed active treatment in 2012 and is in remission! She continues to be monitored with Exams Under Anesthesia (EUA), labs and Oncology follow ups every 12 weeks at Seattle Children’s Hospital.
Grace was diagnosed with Retinoblastoma, pediatric eye cancer, at 8 months of age. Almost her entire left eye was filled with this aggressive cancer, but we had caught it in time!! Within two weeks we had removed her eye (enucleation) and got all of the cancer. After genetic testing and pathology came back, we were blessed to hear that she had the sporadic form of RB and it had not spread out of the eye! However, up until the age of 7, protocol called for frequent exams with her eye specialist to ensure that it was not the bi-lateral (2 eyes) rather than the unilateral form of this cancer.Initially, these exams were frequent and under anesthesia (every 6 weeks for the first year, then 8 weeks, etc…). Along with her initial surgery, this was the most difficult time for us…putting a child under is never easy and waking up from these exams was always tough! Until Grace was able to “graduate” to office exams at the age of three! This allowed us to avoid the hospital and fear of being put under for exams. RB has a 95% cure rate when treated this successfully and the age of 7 is the magic number our RB community hopes to get to without finding new tumors! Grace has done just that and we are truly blessed. She is no longer in need of frequent follow-up and is simply examined once a year. She currently has a prosthetic left eye that needs to be cared for medically 2-3 times/year and wears glasses for protection and vision. She has no depth perception, but has adapted well!! She is currently an active, healthy and happy first grader with a great, healthy future. We thought this would be a great way to celebrate this milestone of her life!!!
Hope Session by Candid Moments Photography. website | facebook
