Ben loves when we blow on his belly and neck…being tickeled, makes him giggle. Ben’s brother Jack (who’s 3) makes him laugh! They LOVE each other. It’s the most precious thing to watch Ben light up and laugh and give us smiles when Jack talks to him … and “tackels” him… Jack will wrestle (lightly of course), and Ben just thinks it’s the best!
Retinoblastoma can show as a glow in the eyes when using flash on a camera. We didn’t notice the “glow” right away, with Ben being so little at 7.5 weeks, I wasn’t using the “flash” on my camera that often on him to save the bright light. But rather, I noticed that he wasn’t following objects like he should or making much, if any eye contact. I moved up his well child care check up fearful something was wrong, but we didn’t know what.
Ben was diagnosed at 7.5 weeks with bilateral retinoblastoma. He is currently 6 months and still undergoing treatment. We are hopeful his prognosis of surviving is very good, with the cancer contained in his retina(s) thus far. But, he does have the hereditary form, which means he carries the germ line mutation in all of the cells in his body and is at a higher risk of cancer in his future. He will only have peripheral vision in his right eye (hopefully will have this), and he will have some obstructed vision in his left eye. We are not 100% sure yet how is vision will be impacted.
Ben has already had surgery for a port placement, 4 systemic chemotherapy treatments, biweekly blood draws since he was 2.5 months old, 3 MRIs, 5-6 exams under anesthesia and laser therapy and one intra-arterial chemotherapy (IAC) procedure with much more in his future.
He was being treated at the university of Iowa from 2.5 – 5.5 months, until 5.5 months we were under the impression systemic chemo and laser therapy was working but at the appt in October we found out there was extensive tumor seeding in his right eye. We immediately flew to NYC, a world renowned hospital and physician for treating retinoblastoma and he was a candidate for the IAC procedure, which he had the day after our exam in NYC.
I am currently on an unpaid leave of absence and it is a financial burden for our family, as well as the NYC expenses we will likely have once a month for year(s) to come.
Because Ben’s blood counts got so low, we also had to take our 3 year old out of pre-school, to stay home with me. So, his brother has also held a pretty isolated life for the last 4 months and will continue to until Ben’s treatment (chemo) has subsided.
This has definitely changed our perspective on life, we feel so much deeper than every before… we no longer feel immune to this awful disease, as it’s hit home. We have felt so much gratitude for the power of your support group and community, the people that do things big and small to make you smile and chip in to make things a little easier for you. We can not wait, when life slows down for us to give back in so many ways, to bring joy and kindness to others and help others in need.