To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
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.
To date, our Violet Brielle has gone through CT scans, MRIs, surgeries, having a port-a-cath, countless blood draws, injections, 12 rounds of chemotherapy, 20 exams under anesthesia (EUA), scans, hospital stays for systemic infections 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. Her body does not produce the tumor suppressing protein that everyone else’s does. 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.
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 affects approximately only 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 12 rounds chemotherapy and tumors are 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) where scans are done of her eyes, 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.
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 completely 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. 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. She is always making hearts melt with her smiles, cheerful giggles and hugs.
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.
Diagnosis and Prognosis – July 18th, 2011 our sweet baby girl Violet was diagnosed with Retinoblastoma, a pediatric cancer that develops in the retinas of the eyes. After genetic testing, it was found that Violet has the RB1 gene mutation and so her full diagnosis was changed to Bi-Lateral Retinoblastoma. Violet was also found to have a small deletion in chromosome 13.
How did you discover they had cancer? 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.
What was your perception of childhood cancer before your child’s diagnosis? Our family was very unaware of the devastation of childhood cancer. We had never even heard of the type of cancer Violet was diagnosed with. No one around us had ever heard of it either. It made me angry as a mother … This enormous lack of awareness and education. It was also very upsetting that Violet had been seen numerous times by her pediatricians from birth and no one ever checked her eyes thoroughly. Had we not listened to our instincts that something was wrong when everyone was telling us Violet was fine, we could have lost her.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? To date, our Violet Brielle has gone through CT scans, multiple MRIs, surgeries, having a port-a-cath, countless blood draws, injections, 12 rounds of chemotherapy, 20 exams under anesthesia (EUA), scans, hospital stays for systemic infections and more. All of this began for her at just 7 months old. Our family faces great financial struggles and a very deep emotional impact due to our long 4 year battle against childhood cancer. We lean strongly on our faith to get us through it all.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? Our lives have been completely changed. When we became parents of a child battling a cancer diagnosis, things would never be the same. So many things shocked us about this terrible disease along the way. We learned our baby that we prayed for and finally conceived after almost 5 years could be taken away from us. We learned that new tumors can and did develop while going through chemotherapy. We were beyond heartbroken when we found out that Violet’s labs showed a rare genetic RB1 mutation that we had never heard of. This meant that not only was she susceptible to cancer re-occuring in her eyes, she was more likely to develop cancer throughout her body in her lifetime because hers does not create the tumor suppressing protein which stops her cells from multiplying. We were furious to find out about the lack of support, awareness and funding for research. Violet is in remission, but she is not cured. There is always a threat and because Retinoblastoma counts for 4% of all childhood cancer, there is not nearly enough being done about it.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? Truly and selflessly be there for them. Childhood cancer brings you to the lowest and darkest times of your life. Families feel so alone. Go to the hospital, bring a meal, go grocery shopping, help clean their home, help financially, send a card, pray. Absence because you don’t know what to say is not acceptable. A hug can speak volumes. As a family that has and continues to goes through it, we never expect that our family and friends will know what to say or do. We just want to feel supported and loved.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? The Gold Hope Project is wonderful. We are so grateful for the awareness that you bring to childhood cancer and for capturing the beauty of these amazing children.
Has your family received a Gold Hope photography session? If so, please describe what those images mean to your family and what receiving the gift of photography did for your family. The Gold Hope Project has been such a blessing to our family. We were able to spend a fun day celebrating our sweet and brave Violet. And, we have received precious photos that we will cherish for a lifetime.
Thank you so much Shenay for sharing with us. Keep up with Violet here.
Ready to do more? How about joining the #randomactofhope movement?