We started noticing Mason going cross-eyed. It was so little no one really noticed it unless you stared and brought it to someone’s attention. It gradually got worse to where his eye turned inward. At that point, we took him to the pediatrician who gave him a quick eye exam and then gave us a referral to an ophthalmologist. The ophthalmologist told us it could be a tumor, or it could be something called Duane Syndrome (DS), and asked to see baby pictures of Mason as DS is often present from an early age or birth. He saw the pictures and swore Mason’s eye has always been slightly turned and then diagnosed him with DS and set a surgery day for months later to try and correct it. We now know that he was wrongly diagnosed.
Months went by where we didn’t know what he had. We thought ‘Oh, he needs an eye surgery and then he will be fine.’ After a few months, Mason started complaining of headaches, but we really didn’t think too much into it as they weren’t that often. Then one day I noticed him playing with his little brother and his legs gave out on him. I thought ‘Well kids are clumsy, and they fall,’ but after a few days of it continuing to happen, we decided to take him to the emergency room. There they did an MRI and after they brought us into a little room and told us they found a tumor. Once we were upstairs and admitted to the hospital in a room, a bunch of doctors came in to talk to us. They said “I’m so sorry, Mason has a tumor on his brainstem called DIPG. And unfortunately, it is fatal and there is nothing we can do about it.” That day my heart broke.
Everyone who meets Mason falls in love with him. He’s a son. A brother. A nephew. A grandson. And he is my best friend. To hear that your four-year-old son is going to die and there is nothing anyone can do to help is the worst thing a parent could hear about their child.
Ultimately the doctors gave us a few options. You can do radiation. You can do a clinical trial, or you can do nothing. Take him home, love him and make memories because the end result will not change. DIPG is a terminal cancer. They said 6-9 months post-diagnosis is an average lifespan. They shattered our hope. But through DIPG and this whole community, we learned so much.
We met so many people and families willing to help and guide us and give us information not even the doctors could. These families gave us hope. We’ve seen families battle this tumor who have years under their belt. Through their help, we got started fast on a tumor biopsy for gene sequencing. This would help see which clinical trials would be most suitable for Mason’s specific tumor.
Mason had some temporary deficits from the biopsy. The right side of his body was extremely weak, and he couldn’t use it. He couldn’t walk. So, then we got started on occupational therapy and physical therapy 2-3 days a week. After working really hard, he regained all of his strength. He was able to do everything just as before.
Mason also started and completed 30 rounds of radiation. The first few weeks of that were rough on him and he was being sedated every day. Towards the end of his radiation, he told us he wanted to try it awake and that was successful! The radiation didn’t seem to shrink his tumor and there was a possible small area of necrosis, but all of his symptoms were gone. He was off steroids. He seemed like my normal healthy boy again.
After radiation, we spoke to many doctors who suggested we try the ONC 201 clinical trial which would be one of the best fits for Mason, so we did. For a while, we thought that the trial was working because clinically, he was ok. He wasn’t experiencing any symptoms or signs of progression. Then from one day to the next, it all changed. He went from talking, running, and laughing at physical therapy to the next day not being able to talk or walk. He started progressing fast, so we did another MRI where we saw the tumor had spread to his midbrain as well. Things have kept going downhill since then for our boy. He can no longer talk. Or walk. Or laugh. He can maybe nod yes or no. And point. He started losing his ability to chew and swallow so we finally made the decision to get him an NG tube. Our last-ditch effort is trying a second round of radiation which is where we are at now. We are not ready to give up on him.
