אבחון ואבחון: רטינובלסטומה
On Baron’s three month birthday, when he was 92-days-old the Yerby family was changed forever. Baron went to his pediatrician for his two month well-baby check up. In the week prior to his check up his Mom and Dad, Casey and Johnathan, noticed that he had what looked like a “cat-eye” with a “glow” especially visible in dim or indirect light. His dad googled “cat eye baby” and “baby glowing eyes” then read through dozens of websites that mentioned foreign words like Leukocoria and Retinoblastoma.
Very alarmed, but also relatively skeptical that this could truly be cancer in a two month old baby, his parents decided that they would wait the next three days over the weekend since Baron had his 2 month check up coming up.
Monday morning arrived, then Casey and Johnathan brought Baron to his check up. The doctor examined Baron while following-up on a slight case of jaundice from birth. From the start of the appointment Johnathan was very clear regarding the family’s concern about “The Glow” and that they were worried it could be Retinoblastoma. The doctor did a quick check with his ophthalmoscope, with the lights in the room on. The doctor said with absolute confidence that both of his eyes were perfect and in fact, the right eye had an even better ‘red reflex’ than the left eye. His parents were assured that they were being overly cautious first-time parents. Baron was given his first dose of immunization shots and sent home as a completely healthy baby.
Following the appointment, Casey and Johnathan felt a wave of relief. They took comfort in the great outcome from their pediatrician’s professional diagnosis. But over the next day they kept seeing the “Glow” in dim light. They took photos of Baron, but hardly ever used the flash because they didn’t want to hurt his eyes or startle him, so they never really captured a glowing eye in a photo. After thinking about the clean bill of health from the doctor, Johnathan decided that he must have a second opinion, regardless of the expense. Casey agreed and found the only pediatric ophthalmologist in Macon, GA and they were given an appointment for April 9, 2015. Johnathan was happy that they were getting a second opinion even if it was nearly three months away. Casey is a social worker for the Veterans Affairs Medical Center and asked an eye doctor at the VA hospital about “The Glow.” He advised her that they should go to Emory right away and skip any other local doctors.
Casey was the best advocate and great mom—she decided they were not going to wait three months for a second opinion. After being told they could not go directly to Emory without a referral, Casey called five Atlanta-based pediatric ophthalmologists searing for someone with an immediate opening. Even after she secured an appointment two weeks out, she persisted to get an earlier appointment. Something gave her that determination, even though she and Johnathan were both expecting that they would go to the appointment as a confirmation that there is nothing wrong.
The next Monday morning on February 2, 2015 Casey, Johnathan, and Baron left home at 4:30 a.m., drove two hours to be in Atlanta by 7:00 a.m. to see the pediatric ophthalmologist. A nurse came in to dilate Baron’s eyes, then about 10 minutes later the doctor came in to look at Baron. The next 15 minutes were a life altering blur of shock, dismay and sadness as they were given a private room to gather themselves together after the doctor confirmed “The Glow” was Retinoblastoma and that they needed to see an Emory Eye Center Retinoblastoma specialist right away.
The first day at Emory included a team of doctors, nurses and a sonographer. The diagnosis was a large tumor taking up about 70% of Baron’s right eye. The sonogram revealed the left eye was tumor free. After staying at the Eye Center until about 6:00 p.m. for another chance to speak with the Retinoblastoma specialist they were told to go home. The MRI scheduled two days later meant another drive back to Emory. The MRI results were sent directly to the original pediatrician.
Johnathan called the pediatrician back in Macon to provide an update and ask for his results. The MRI confirmed the sonogram results—one large right eye tumor. During the call Johnathan asked the pediatrician if he wanted a second look at Baron eye to see what Retinoblastoma looks like for a better understanding of the tumor he missed. The doctor said he would really like to see Baron again. That Friday morning Baron saw the pediatrician just for the benefit of educating the pediatrician and his staff. One thing that really upset Baron’s parents is that a nurses commented during the appointment that all of the ophthalmoscopes fixed since Johnathan called two days before. The doctor clearly now understood what he had missed in Baron’s eyes just one week prior.
The Yerby family was then assigned an oncologist at Children’s Healthcare of Atlanta – Egleston who would follow up with them to get chemo started the next Monday. Johnathan and Casey spoke with the oncologist over the phone about the treatment plan and the high possibility of enucleation. They also had their first exam under anesthesia appointment scheduled, and were told that it was possible that Baron’s eye may be enucleated if cancer spread to the optic nerve or the eye was unsalvageable.
Baron had to fast the night before the exam under anesthesia, and it was a very tough night because he was accustomed to eating every three hours. The family left home at 3:30 a.m. with a hungry crying baby, drove to Atlanta and waited for their 99-day-old son to have his first of many exams under anesthesia.
When the doctor came back into the room with a rolling computer and a stoic look on his face, John and Casey received even worse news. The sonogram, dilated eye exams, and MRI showed that the cancer was in only the right eye – the more thorough EUA showed that his cancer was Bilateral. He had one large tumor in his right eye taking about 70% of his eye and two small tumors in his left eye. His right retina was completely detached and it was determined that he had no vision. The EUA did not conclude if the cancer had spread beyond the eye to the optic nerve or bone. However, exam evidence indicated that the cancer was contained.They we told that Baron had about a 20% chance of keeping his right eye.
Fast forward, Casey and John were connected with a fantastic organization, Jay’s Hope Foundation of Macon, GA. They provided emotional, social and some financial support as they began their long Retinoblastoma battle. Each chemo treatment has been slightly different. The first treatment was very rough on Baron as he got sick several times. During the treatment his color and smell changed. The first ten days following chemotherapy Casey and John thought Baron’s previously extremely sweet and happy demeanor was lost. Eventually. Baron started smiling and being his happy self again, only getting upset when he was hungry.
Before the second treatment, John and Casey were approved to stay at the Ronald McDonald house in Atlanta, a huge money and stress saver. The second treatment was not as bad, Baron was sick for five days. The third treatment was the worse by far the worse, and Baron became sluggish and sick, lost his hair and nearly 10% of his body weight. By the fourth treatment Baron was having mixed results and the chances of saving his right eye rose from 20% to over 50%. Unfortunately, two new tumors were discovered. After the fourth treatment Baron was in high spirits and recuperated well. The next day we he had a voice, he could move around in his walker, and he was in a great mood. While going home from Emory and stuck in Atlanta traffic, Johnathan and Casey had a great nearly one hour conversation with Megan from Know the Glow.
Join Baron’s journey via his Facebook page with over 700 followers, GoFundMe account with 100 people donating, and a handful of amazing people supporting his family.
Johnathan and Casey are especially thankful to their family and friends, fellow RB parents that they spoke with on the phone or Facebook, Jay’s Hope, Atlanta Ronald McDonald House, Know the Glow, Binkeez for Comfort, and everyone that has helped, prayed or sent positive thoughts. They are thankful that they listened to their intuition and worked as a team.