Diagnosis Day, November 12, 2022
That day changed our lives forever. Before that day we had never heard of DIPG…Diffuse Intrinsic Pontine Glioma. That day the very first thing we heard from the doctor was, “Your daughter has a large mass deep in her brain. We are assembling a team of doctors to meet with you soon.” Awhile later we met with a team of many doctors and nurses in a small room. I don’t remember much of what was said from that meeting. I do remember hearing that Briella had a large, fast growing brain tumor in her brain stem called something with the abbreviation of DIPG. Because of its location it could not be operated on. Other things I remember them telling us…children with this type of tumor live 6-12 months once being diagnosed. They told us of a few options for treatment. They told us about medications they would be putting Briella on to help alleviate symptoms some. And that they would meet with us again the next day after giving us time to process. And then they left us in that small room.
How does one even process this news? I never thought our family would be that family walking a terminal diagnosis. We clung to each other and to Jesus. Some of those first thoughts were…how do we walk this path?…Eternity is far longer and we need to remember that…how and what do we tell Briella. I’m not even sure we formed many, if any, truly coherent thoughts. We had so much to process, and we had to let our family know. Those phone calls were ever so hard. We were in shock ourselves. It felt a little bit like walking in an unreal world for the rest of that day.
The following day we met again with doctors. This time there were not as many doctors. We had some decisions to make. The doctors gave us a far bleaker picture this time. They showed us the images from the MRI. Briella’s tumor was very large for a DIPG. It was the size of a pear in her brain stem. At this point it was already starting to hinder the drainage of brain fluid. The doctors went over much of what was said the day before and then apologized. They let us know that after looking at the images again, Briella could have as few as 2 days to live, possibly 2 weeks and if we were lucky 2 months. They then went through treatment options again…radiation that would last 30 days but would maybe only give her an additional 2 weeks…surgery to put in a brain shunt to help brain fluid drain, but as large as the tumor was that would not buy us much more time either. We also talked through how to tell Briella. So much to process and they wanted decisions to be made. If we were going to do anything time was of the essence. Our other option was to just take Briella home and enjoy the time she had left without doing any of the doctoring. We felt so ill-equipped to make these decisions. God placed people right there at the hospital at just that time to pray with us. After what felt like wrestling with the options for hours, we made the decision to take Briella home and enjoy life as much as we could. Briella would be put on in-home hospice care. While we were meeting with the doctors, Briella’s big brother was with her. In her room the two of them put Briella’s wishes for for stay at The Castle, Sanford Children’s…1. Go home. 2. Be home. 3. Stay home. Walking back in the room and seeing those wishes written on the white board, we knew we made the right decision. We were going home! No radiation, no shunt, no weekly doctor's appointments. We were going home and making memories and cherishing our girl.
We joined a Facebook group for DIPG families. Here questions are asked, diagnosis shared, prayer request shared and so much more. We have seen the faces of so many little ones diagnosed with DIPG. It is so sad. We were told that DIPG is very rare. Seeing all these little ones faces, I’m not so sure it’s rare. In the US alone, 200-400 children are diagnosed with DIPG every year. Fewer than 10% of DIPG patients survive 2 years past diagnosis. The median survival is 9 months. A DIPG tumor is very aggressive and grows quickly causing symptoms to develop rapidly. There is no known cure. DIPG is the deadliest form of childhood brain cancer, and the prognosis is no better than it was 40 years ago. As the tumor progresses, it puts pressure on the nerves that control the body’s vital functions. Slowly children affected become paralyzed, losing the ability to swallow, speak, and eventually breathe. And yet they remain fully aware.
November 12 changed our lives. We had to learn how to walk a terminal diagnosis. We joined a new community…the DIPG community. Before we left the hospital, we told Briella about the tumor. We told her that the tumor was not going away and all the symptoms with balance and more would not go away and would probably get worse. We told her that children can die of a DIPG brain tumor. She went home determined to live and live life BIG.
Also, that day, we again surrendered to God. Briella was a gift to us from God. God’s ways/thoughts are not our ways/thoughts. We certainly did not understand why Briella, why us. Everything about it felt hard, yet we knew God was able. God is sovereign. Briella’s future looked very bleak, but God is bigger than any diagnosis. He is always able. That day we realized God was our only hope. The doctors could not do anything for us. Briella always belonged to God; we were just given her to raise…she was on loan from God. So that day we surrendered Briella to God. God didn’t change because Briella received a terminal diagnosis. God is good! He has always been good and we chose to remember that day that God is still good.
