This past week has been one of the roughest weeks of my life. Tony and I were faced with an incredibly tough decision.
On Wednesday we met with the radiation oncologist at Emory, Dr. Natya. The meeting was pretty intense. We were filled in on all the details of possible treatment for Gus. I asked her if she had seen Gus’s MRI, she had. I asked her what she thought, she said it was one of the worst she had seen. I felt like someone had punched me in the stomach. We went over the lengthy list of side effects for radiating the brain and spine using this type of radiation. Dr. Natya did confirm that this treatment would definitely help him feel better. We didn’t agree to anything then, but I did bring Gus back on Thursday for “simulation” to prepare for treatment and get the ball rolling if we decided to do this. I was still really on the fence about it and didn’t want to make any decisions until I had spoken to Dr. Mazewski.
She called me later in the evening and I gave her every single concern and question I had. She gave me some really good advice and mentioned how well Gus has taken everything we’ve thrown at him. I felt much better. Later that night Tony and I laid out all our options and pretty quickly came to a decision.
Fight with everything we have, that means radiation and chemo. We are not giving up! Its time to get in war mode!
We start radiation on Monday. Treatments will be every day Monday-Friday for 4 to 6 weeks. After 2 weeks of radiation, if Gus is handling it well, we will start chemo.
Gus is in really bad shape. I can feel the tumors on his back. He is in constant pain and is so miserable. We have put him on morphine and a fentanyl patch as well as decadron to alleviate pain caused from brain and spinal swelling. Everything hurts, his headaches are constant, and he has really bad episodes complaining and screaming that his throat hurts. I am thinking he is having more severe reflux. We’ve been debating all day whether or not to admit him into the hospital today. Dr. M had suggested we may want to admit for a few days to get his pain under control. We have decided to try and tough it out today, get to our first treatment tomorrow, and then go straight to Scottish Rite for admittance. Once we are admitted, he can be transported to treatments everyday. We are worried that if we admit today, because its a Sunday, it may delay our beginning treatment. We cannot delay one more day. Also there will not be the team of doctors there today needed to correctly diagnose the pain. So hopefully we can continue to manage his pain with the morphine until we can get to the hospital tomorrow.
Yesterday, Tony and I moved our futon from downstairs to replace Gus’s toddler bed. He has pretty much outgrown it and it is now very uncomfortable for him to sleep in. He also enjoys the comfort of having one of us laying next to him. He now has more space to spread out and we can rest next to him comfortably. We are trying our best to make him as comfortable as possible. This will do until we are able to get him a real bed.
We are overwhelmed with the love and support everyone has continued to send our way. I know that Gus and our family are covered in prayer thanks to all our prayer warriors out there. So many of you have reached out to us wanting to help. We are sooooo exhausted and would appreciate any kindness offered during this extremely difficult time. My lovely friend Mary Bradley has offered to help organize all assistance. She has a list of our specific needs. If you are interested in helping out please contact her at email@example.com.
The next 2 months are going to be tough on all of us. I will try to post more updates in the coming days when possible.
xoxo Mama E