Thank you so much to everyone who has helped us during this time. I don’t know where we would be without your support! I stopped driving back and forth a while ago. The nurse says that since I have had radiation before, the body remembers and makes me tired sooner. The Hope Lodge has been wonderful and I’m so glad they are here for all of us. 

I will be at Ashley for the Arts right after treatment ends. I signed up for the booth decorating contest, and I didn’t know what to do at first. I thought long and hard and decided to go with the “No One Fights Alone” theme. I started making decorations for it last weekend, and had some extra paper. I am having the Hope Lodge guests and staff write on the back of them and I will turn them into bookmarks. I ordered purple awareness ribbons, and donations over $20 will enter you for a chance to win a wreath made by me, while I am at the Hope Lodge. I am raising funds to give back to the Hope Lodge. They primarily run on donations and volunteers, so everything helps. The people I meet along the way are wonderful, caring and understanding. You don’t realize you need those people when things get rough. I also have a poster being signed by my care staff and people who are supporting me down here. There are so many people involved, we truly never fight alone. 

💜 

Just got the results back from my original tumor biopsy and it is now classified as a Grade 1 instead of Grade 3.

TL:DR

After my appointment with neurosurgery, they decided that they wanted to see if my original brain tumor, removed in 2010, was truly in fact a WHO grade 3 since classifications changed in 2021. They have kept the tumor in frozen storage since then. 

We have found that it is now classified as a Grade 1 instead of a 3, but there is rhabdoid morphology (which is why they classified it as a 3 in 2010). That means that the tumor is more benign than they thought, but it isn’t as benign as a true Grade 1. Treatment consists of surgery or radiation. They have also done genetic testing on the tumor to see what mutations are there. They have discovered a mutation that is highly related to breast cancer and poor prognosis with tumor progression in breast cancer. In 2010, Dr Link told us that my tumor was closely related to breast cancer and with my mom’s history, we started monitoring yearly since then. 

The original plan with radiation therapy (when they thought it was Grade 3) was 33 days of radiation. They called me this morning and told me that they wanted to do 5 days of SBRT instead of the 6.5 weeks. I then asked about the mutation and the NP didn’t know the answer to that. She said she would be in contact with the radiation oncologist and ask what his thoughts were. I recieved a message back that he wants to do 33 days with higher dosing than I recieved in 2011. 

Always do research and advocate for yourself and others if you have the opportunity. Ask questions. I’m so glad I asked. Though I don’t look forward to a longer treatment, this is the best move to be made against this to not have to worry about it as much. If you have questions for me, I’ll always try my best to answer. 💜