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.
Violet Brielle has gone through CT scans, MRIs, surgeries, having a port-a-cath, countless blood draws, injections, 6 months of chemotherapy, multiple 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 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!
How rare is Violet's diagnosis of Bi-Lateral Retinoblastoma?
*Retinoblastoma accounts for less than 4% of all cancers in children younger than 15
*250-300 children are diagnosed with Retinoblastoma each year, nationwide
*40% of children with Retinoblastoma will have tumors occur in both eyes
*30% will have the gene mutation
*5% of Bi-Lateral cases will have a visible chromosome 13 deletion
Violet's diagnosis comes down to approximately 13 babies out of the 4 million born each year.
Childhood cancer in general is NOT rare, however, Violet's combined and specific diagnosis is.
Violet completed chemotherapy in 2012 and is in remission! She continues to be monitored closely with Exams Under Anesthesia (EUA), labs and Oncology follow ups every 12 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 diagnosis.
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. 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 Violet developed a new tumor in her right eye, 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 and after everything she has endured, Violet is a sweet, smart and spirited little girl who loves life. Every day you can find her listening to music (her favorite is Brandon Heath), singing, playing her piano and dancing. She spreads joy everywhere she goes with her smile and outgoing personality. Violet makes us melt with her cheerful giggles and hugs.
She reminds us through her healing to always count our blessings. Violet has shown us the true meaning of faith and what being grateful with your whole heart is really all about.
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 happy and loving sweetheart and she is surpassing all of her milestones. ♥