Abby is a very lively and social child. She enjoys everyone she meets and is a ray of sunshine in the world. Abby is very bright and excels in school. Abby loves math and science. These are her passions. Abby participates in competitive musical theater, takes voice and piano lessons, participates in church choir and has recently started playing the trumpet in band.
We adopted Abby from China at age 2. Abby’s sister, Jenna, is also a cancer survivor. Jenna’s vision deteriorated as a result of her brain tumors and she subsequently started kindergarten at the Low Vision School. The day we saw the low vision resources in our area, my husband and I decided to adopt a visually impaired child from China. We chose Abby. Abby was born with a malformed eye. We didn’t know if she had vision in her other eye. When she arrived, it became clear that she had vision in her seeing eye, but her malformed eye was causing her pain so we had it removed. During the procedure, the surgeon pulled out a massive cancerous growth, Retinoblastoma. It had exceeded the eyeball and was systemic. Abby underwent aggressive chemotherapy and proton beam radiation. She was cured. Abby has a prosthetic eye and will likely have to have reconstructive surgery as an adult. She has full vision in her seeing eye.
Six years later, Abby started having massive amounts of blood in her urine. Tests were initially inconclusive. It was either a cyst or a tumor. As months progressed, it became less likely that it was a cyst and more likely a tumor. Surgery was scheduled to have Abby’s kidney removed….an open radical nephrectomy. The kidney had to be removed intact in case it was cancerous, otherwise cancer could be spread throughout the body. After surgery, Abby was diagnosed with Renal Cell Carcinoma. The surgeon was able to remove it completely so no further treatment was necessary. Abby can live a full life with one kidney.
After extensive genetic testing, it was determined that Abby’s initial cancer was spontaneous. The kidney cancer was likely a side effect from the strong chemotherapy utilized to cure it. Abby has been stable for 2 years now. Her prognosis is unknown.
Cancer has profoundly affected our individual and family lives. This is intensified as both our children, biological and adopted, have gone through various cancer treatments spanning 12 years. A significant aftereffect of cancer has been anxiety. It is transient at times, pervasive at other. My husband and I have watched both our children go through initial treatments and both have relapsed. Both our children have experienced their own cancers, their own relapses and watched each other go through treatment. We are anxious people now. This is something we will always deal with.
All that being said, I am grateful for the cancer experience. We have been surrounded by amazing people…those who walk the journey with us and those who have supported us in the journey. We appreciate every moment we are given in life. We are better at prioritizing our budget and our tasks. We are stronger than we ever imagined we could be. Our faith in God has been reaffirmed. We are imperfect individuals that live a life of gratitude together as a family.
Daniel loves to swing and be outside. He is shy and very sweet. Daniel loves movement and is fascinated with toys that spin. He loves music and lights up when he hears the theme song to one of his favorite cartoons like Caillou and the Wiggles.
When Daniel was a baby he had seizures. This led to genetic testing which revealed his deletion of the 13th chromosome. Deletion of the 13th chromosome is a rare genetic condition that can affect a variety of other organ systems. Children with a deletion of the 13th chromosome are at an increased risk for retinoblastoma and some other cancers. An eye exam under anesthesia was performed and Daniel was diagnosed with unilateral retinoblastoma in 2011.
He has had laser therapy, cryotherapy, and chemo injections into his eye. He is at risk of tumors in his eyes until age 7 and at risk of secondary cancers for life.
My daughter Charlotte is bouncy, happy, loving, goofy, and focused. She loves to play, be tickled, receive love from friends and family. She loves attention and being silly. She loves Mickey Mouse and Minnie Mouse, Goofy, Frozen, Rio, and Daniel Tiger. She loves to draw and color, take a bath, swim, vacuum, dust, and play with the dogs.
When she was one and half years old we noticed she had vision problems, was bumping into things and had a white glow in her right eye. In February 2016 she was diagnosed with Bilateral Retinoblastoma or eye cancer. Retinoblastoma forms in the retina of the eyes and most commonly affects children. Treatment plans usually consist of chemotherapy, radiation and/or surgery. Charlotte has been through chemotherapy and enucleation of right eye. She is now blind in her right eye. Cancer has changed so much!
Hope Session by Jessie Hearn Photography. website | facebook
Brendan is a tough cookie!!! He is one of 5 kids (but second born). He is extremely stubborn and strong-willed (gives me all my grey hair ;). He is determined. He loves sports, mostly football right now. He is into rocks right too. He loves xbox and Minecraft. He also loves legos. He can be very thoughtful and loves to get acknowledged for his good behavior.
Brendan was diagnosed at 13 months old with unilateral Retinoblastoma. We noticed his right eye started turning inward (crossing). Retinoblastoma occurs in the retina of the eyes and usually occurs in children under the age of five.
Brendan has been to many, many eye exams. He has been through lots of EUA’s (exams under anesthesia). He received six months of out patient systemic chemotherapy. He also received one transfusion and was hospitalized for that. He had a port put in and a port removed. We traveled to Philadelphia for treatment from Illinois and still go there for eye exams every 6 months. He is now 6 and has been cancer free for about 4 years.
I think cancer changes us all. It makes you realize things like this don’t just happen to other people, they can happen to you. It has also made really appreciate our health and happiness.
Audrey is one brave little girl! On Friday, February 1st, 2013 our sweet Audrey was diagnosed with Unilateral Retinoblastoma, a pediatric cancer that develops in the retinas of the eyes. She was just 2 years old. Less than a week after diagnosis, her doctors at Memorial Sloan-Kettering in NYC decided it would be best to go ahead with an enucleation (eye removal) surgery because her cancer was too advanced. She lost her eye, but that doesn’t slow her down. She is proud to show off her prosthetic “special eye” to the world! After her surgery the cancer was gone but she still needed to have weekly and monthly exams under anesthesia to be sure everything remained clear. Now that she is 5, we continue her check ups once a year. She also has visits with her Ocularist when we need to polish and adjust the size of her special eye. After all she has been through, Audrey is such a caring and kind little sweetheart. She wants to become a doctor one day so she can help other sick kids feel happy. Audrey wanted to have her session with firetrucks and firefighters because they are used to fight fires, just like she fought Retinoblastoma.
Hope Session by Vita Catturati Photography, LLC. website | Facebook
Continue to provide portrait sessions for kids like Audrey.
Our Peanut was diagnosed with retinoblastoma around the middle of January 2011. She was only 3 1/2 months old. My husband was also diagnosed when he was about 5 months old and by the time he was 6 months, his eye had been removed and he was wearing a prosthetic. When I was pregnant, he had a dream that something was wrong with our little Elly’s eyes. So, from the minute she was born my husband told every medical professional about his diagnosis, in hopes that someone would take the time to really examine our baby girl. We had spoken with 4 different pediatricians who assured us that our baby’s eyes were perfect! As soon as we met with the 5th pediatrician, she immediately did a red-eye test (multiple times in fact), and even though she couldn’t quite tell if she was seeing something, sent us to Portland, OR to visit the Casey Eye Institute.
At the time, we were living in Eugene, OR, and my mother-in-law made the two hour trip with myself and Elly since my husband had to be at work. I remember meeting with Dr. Stout, speaking with him about our situation, doing red eye-tests, then finally going back for an ultrasound of her eyes…sure enough, there it was…a tiny tumor in the retina of her right eye. For the next 7 months, we found ourselves living in a fog…was this a dream? Were we really standing by our baby girl while she fought cancer? She was immediately scheduled for surgery to have a port put in her chest so she could start chemo treatments. By the time she was 4 1/2 months old, she had already undergone port surgery, laser eye surgery, and her first of 3 rounds of chemo.
Her first round of chemo was an experience I’ll never forget! We stayed at the hospital overnight in the chemo ward so Elly could be monitored while undergoing her first treatment. Staying in the pediatric chemo ward, seeing all the children, and meeting families whose struggles made our’s seem minuscule, was such an eye opener and made us feel thankful that we found Elly’s tumor so early on. Compared to most of the children and families, we were fortunate to know that there was a light at the end of our tunnel. Some were praying for a tomorrow, waiting for blood transfusions, or just trying to enjoy what little time they may have together.
For the next 6 months, Elly underwent 2 more chemo treatments, 4 more laser eye surgeries, weekly CBC’s (complete blood counts), and monthly EUA’s (exams under anesthesia). Finally, on August 11, 2011 we visited with an oncologist who gave us the great news that our 1o month old baby girl was cancer free! Elly Anne is now about to be 5 years old (on Oct. 2nd) and after countless EUA’s is doing amazing! We are now at a point where Elly is old enough to be examined without anesthesia and we only make those visits twice a year, which is something to celebrate. We have also been told that she has perfect vision! The tumor in her retina turned to scar tissue, so she doesn’t have central vision in her right eye but has maintained peripheral vision, which allows her to see movement.
Through this, Elly has given US strength and showed us what it means to be a true fighter! This experience has given us a new meaning to life and the realization that we truly do need to count our blessings daily. No child should EVER have to fight such a battle, but I’m very thankful to say that ours is a survivor!
