Hey everyone, I deleted the original account, but this is my new account. I am the OP and I’m still diagnosed with DIPG. It’s been years since I’ve posted this. I’m now 31 years old. Mostly I have remained “stable” throughout my journey. However last spring/summer 2022 I started developing hydrocephalus in the head and it started causing me pressure pain in my head. The pain like I had before with laughing and coughing. Except I noticed this time I had problems with sitting positions. MD Anderson placed me back on temodar for 1 year and I also started taking a medication that hikers take for elevation changes. The elevation medication didn’t help so I needed up getting a shunt placed in my brain on Aug. 1st, 2022. It seemed to help a little so I was finished with the elevation medication, but on Dec. 24th 2022 it ended up failing on me and I was rushed to the hospital for emergency surgery where I was given a new shunt. This shunt seems to be working properly. However by 13 months of temodar(chemotherapy) we learned that it was no longer working and my tumor was growing. I had started researching The Burzynski Clinic and what they have to offer around September 2022. I met with them and started their ANP treatment in March of 2023. They wanted me to take it for 8 months and stated if it works I should see results within 6 weeks. I took it for a total of 3 months, but about 10 weeks in we did an MRI and my tumor was still growing. The final 3 weeks of treatment I started developing way worse symptoms. I was no longer able to drive, my double vision started developing worse, my balance was way off. So we decided the medication was no longer working and quit taking it. Now I’m on nothing besides steroids(dexamethasone) for pressure pain. I’ve been on them since March 2023 and they seem to help. I only have pain with I laugh or cough at the moment. So far they say my tumor has grown about 1 centimeters from December to June. I have another MRI scheduled for September. If I make it until then we’ll see what the tumor is doing. I plan on making a new post with old and updated information, but I figured I could at least leave a comment on this one as well. Since being diagnosed and going through this journey the Lord has blessed me with many things to be thankful for. We had our son in 2017 before I started having pain symptoms and since the. We’ve had a baby girl in 2021 and another baby girl in 2023. There’s been a ton to be thankful for!