Brain Cancer Sucks

Been keeping it a little quiet

but I have a brain tumor which explains a lot

people been wanting a way to help. 

Love, Joshua Perkett

 Josh was born with a very rare genetic disorder called neurofibromas 1 (nf1). It is a disorder that can cause bumps and marks on the body and sometimes leave tumors along the nervous system. They are almost always benign. Only rarely are they malignant, cancerous. We didn’t think there was anything to worry about. 

 Josh has been experiencing headaches, confusion and hearing loss for years. Even with his diagnosis of NF1 doctors didn’t take his symptoms seriously. It took almost 3 years of him suffering and a traveling Dr that was covering his Dr to finally order a MRI. The MRI showed a large tumor in Josh’s cerebellum, over 5 cm. It was a large brain tumor. Josh’s primary Dr told us that it looked like a glioblastoma. This was devastating since I had already known too much about this rare cancer since my mom just passed from it last year. We went and got the help and expert opinion of a neurosurgeon that thought it could be something else. 

Josh underwent a biopsy so we could know for sure what it was. At first thought from the biopsy was that it could be a mid-line glioma (worst case). Mid-line glioma didn’t have a long life expectancy, only at the most 14 months from diagnosis. Just the same as a glioblastoma. The full panel wasn’t back from the pathologist so we were told to wait to hear for sure. We heard back from the oncologist that it wasn’t the worst case and we still needed to hear back about exactly what it was. He didn’t think it was an aggressive tumor. We took this as good news and we were extremely optimistic about what could come next. 

 Christmas Eve we got the final call from our neurosurgeon about the pathology report. We weren’t expecting what we heard. We thought the worst case scenario was behind us. He let us know that the tumor is called a High Grade Astrocytoma with piloid features. This is a tumor that is extremely rare and he only could find 6 other cases with this tumor. It’s so rare because only people with NF1 could get this tumor. So it is rare on top of rare. With brain tumors when it’s classified as “high grade” it means stage 4 brain cancer. As we have been finding out all brain tumors have little known facts about them. New tumors are being found and they are trying to learn more about them but little is known about brain tumors. As a friend said to me “Like we can send a rover to Mars but know Jack shit about a tumor?” The only other people with this tumor have lived from 2 months after surgery to 1 living 14 months and still going after last check in. So what does this mean for our Josh and for my family? I don’t know…

 I do know that during this unknown time I can’t work. Josh can’t work. Josh and our kids need me more than ever before. Landon and Abra have been unbelievable during this time. Our sweet sensitive Abra hasn’t been to school for a month and I need to be there for her daily to help her. Of course Josh needs me with him. He’s chosen not to drive because of his balance and other limitations and needs someone with him “just in case”. 

I do know Josh is undergoing surgery on 12/27/23 to try to remove as much of the tumor as possible. They are hopeful they might be able to get 75% of it. They cant get more of it because of where it is in the cerebellum and since it’s already wrapped around his spinal cord. If everything goes according to plan then after recovering he will undergo radiation and chemo. Then we just don’t know how the tumor will react and how much longer he will have. 

 During this time that I can’t control or know what the outcome will be I do know how many great people and family we have met along the way and how I know you all will be there for us. Thank you! So much love to you all! 

-Jessie Perkett