Maxen’s Story

Posted on 2016-04-13

It began with some very small indicators that something was not quite right. A bit delayed smiling, habit of resting his fingers on his eyes as soon as he had control of his hands, not reaching out for things. However, it wasn’t until we went on a trip to New Zealand that we found out what was really wrong.

One sunny evening, we moved our little man away from the sun pouring in a window into a place where it was a little darker. His pupils dilated and instantly we noticed just whiteness where there should be black. His father, Huw, looked online for “white eye,” “cats eyes” and the images that came up seemed identical to what we were seeing in Maxen’s eyes. We stumbled across a website called Know The Glow® and we felt almost certain that our little boy had Retinoblastoma.

The Know The Glow® website pointed us towards Children’s Hospital of Los Angeles (CHLA) and as soon as we landed back on U.S. soil we headed straight there. The staff was amazing! Within 24 hours we were admitted, had a confirmed diagnosis of Bilateral Retinoblastoma, and were faced with a decision of having our little boy’s eyes removed or going through months of brutal chemotherapy and laser/cryotherapy treatment to save them. We felt that if there was any chance of saving any vision, it was a chance we were willing to take. The staff at CHLA made this decision even easier with the confidence and patience that they showed us. And the stories we found on the Know The Glow® website helped us see that there is a path out of this and HUGE hope for our little one.

Maxen was a CHAMP as this all went on around him and by day 5 we were discharged having had an MRI scan, a port implanted, and the first 2 days of chemotherapy. The next 6 months were a blur, with two days of chemo combined with laser and cryotherapy every month. However, as the tumors shrunk and his retinas reattached, we began to see small victories. Max started crawling and reaching for things, he began to smile at us more and doing all things that little boys do.

We thought we were done with chemotherapy but not so. Retinoblastoma is a nasty beast and the tumors had started to produce seeds that, if left unchecked, would eventually rob him of any remaining sight. The team at CHLA recommended a new treatment where the chemotherapy was injected directly into the eye. Max was yet again on weekly visits to the hospital.

We are thrilled to say that Max is now 18 months with no tumor activity. He has been cleared of any brain tumors and is doing extremely well. As all 3-year-old boys, he is pure destruction, cheeky, loves showing off, swimming, reading, running, climbing, exploring and eating pizza. Our lives are immeasurably different to what we had envisaged. Huw decided to become a stay-at-home Dad so that he could look after Max full time as he went through chemotherapy. Never the one to rest, Huw used any down time to start up a website and YouTube channel focusing on family food and documenting the life of a stay-at-home dad. We are now a family of four and love our lives and the path that we have followed. We feel so extremely fortunate to have met all these amazing people who we would never have met without having to travel this path.

On a final note, once we learned that Retinoblastoma could be detected by simple flash photography, we looked back at photos of when our little man was very little. In some of the photos when he was only 5 weeks old we could see “The Glow.” It is highly likely that he was born with very advanced tumors.  We can’t emphasize enough to everyone that we meet to take this simple step with any newborn and to “Know The Glow.” We are dedicated to helping spread this message as it can help save a child’s sight and potentially their lives.