On Monday, July 18th, 2011 our sweet baby girl Violet was diagnosed with Retinoblastoma, a pediatric cancer that develops in the retinas of the eyes.
The doctors did not catch this. We did. It started by listening to a gut feeling we had after noticing a very slight tracking issue with Violet’s left eye and a lack of emotion in it. Then, after seeing a white glow on that same eye in a handful of photos, we began to research online. Violet was seen regularly for her weekly appointments, her 2 and 3 month appointments and twice when she was 4 months old. At all appointments her eyes were looked at and nothing out of the ordinary was seen. In most cases of Retinoblastoma, pediatricians do not catch this condition in its early stages. This is because they fail to complete a simple dilated eye exam.
After genetic testing, it was found that Violet has the RB1 gene mutation. This means that not only is she susceptible to cancerous tumors occurring in her eyes, but she also has a higher probability of cancer occurring in other parts of the body throughout her life. Specifically, Violet is more likely to develop a cancer of the pineal gland in the brain (pinealoma), a type of bone cancer known as osteosarcoma, cancers of soft tissues such as muscle, and an aggressive form of skin cancer called melanoma.
Violet was also found to have a small deletion in chromosome 13. This condition is very rare. It 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. At this time, Violet is showing none of these! Praise God!
Violet completed 12 rounds chemotherapy in 2012 and is now stable and in remission! We wish her fight and risk stopped there but it does not. Violet continues to be closely monitored with Exams Under Anesthesia (EUA), labs and Oncology follow ups every 16 weeks at Seattle Children’s Hospital.
These EUAs and labs are to make sure there is no recurrence of cancer and her follow up appointments check on her physical well being in relation to the risks associated with her full diagnosis. MRIs, audiology and vision exams are also a part of her yearly monitoring plan.
Early detection and chemotherapy saved Violet’s eyes from enucleation (removal). We are very grateful that we trusted our instincts and had Violet seen by a specialist right away. Unfortunately, the tumor in her left eye was very large. There was a drastic reduction in tumor size through chemotherapy … the most her medical team had ever seen! But still, as it shrank it was revealed that a lot of damage was done. Violet’s central vision is wiped out. Thankfully, it was recently confirmed that her peripheral vision was saved! Even though a new tumor was found in her right eye during treatment, it was caught soon enough to treat with cryotherapy and her vision in that eye is now 20/40. Violet patches daily for 2 hours to strengthen her left eye as much as possible. We continue to pray for miracles in her vision.
Even through everything she endures, Violet is a sweet, happy, intelligent and very spirited little girl who loves life. Every day you can find her listening to music (especially her favorite Brandon Heath), singing, playing her little red drum set and dancing. Violet shines God’s love everywhere she goes! She is always making hearts melt with her smiles, cheerful giggles and hugs.
It has become Violet’s joyful mission to give comfort and smiles to other children who are courageously battling cancer. Violet prays for them daily, brings her Blessing Bundles to her local children’s hospital and even ships them worldwide. Violet wants all children and their families to know that they are not alone in their cancer fight and that they are abundantly loved. She also enjoys working closely with Make-A-Wish, where she helps make wishes come true for children facing life threatening illnesses.
Violet reminds us through her healing to always count our blessings. She has shown us the true meaning of faith and what being grateful with your whole heart is really all about. Every day is a precious gift.
We humbly ask that you keep our Violet in your prayers. By the grace of God she is doing amazingly well! She is such a loving sweetheart and she is surpassing all of her milestones.
Learn more about Violet’s journey: