I’ve been agonizing over whether do pursue radiation. Here are my own arguments for waiting and seeing (not radiating) and for radiating now.  I’m now 70/30 against radiation. I think Andy is 60/40 in favor of radiation. If we plug our nose and jump, which way should we go? Wait and See (Do not Radiate Unless it …
Continue reading “To Radiate or Not to Radiate — That is the Question”
In the midst of our anguish about how best to treat Jude, we have to enjoy the fun and chaos the boys bring us. I got this email from Andy who is describing Bobo (Asher’s nickname): “I gave Bobo a bottle and felt he was a little wet, so I took him up to change …
This decision is just torturing me. I was feeling great earlier today after meeting with the oncologist and was feeling like I had made up my mind that we should not pursue radiation at this time, but that we would pursue it if it came back a 3rd time. However, after our 1 hour and …
Jude is a smart kid so I figured I could give him a little information and figure out what he thought about whether we should pursue radiation treatment. It’s his brain, after all, that would be radiated. I didn’t tell him about the side effects of radiation or the risk of spreading if this tumor …
In preparation for the meeting with Jude’s oncologist today, I read all the literature (5 articles) describing what happened to various patients world-wide with this tumor who received different treatments.  So, I feel like I know more than ever what we are up against. After the meeting, I’m feeling more comfortable taking our chances on the …
Continue reading “Update from Meeting with Jude’s Oncologist”
No cancer cells were detected in Jude’s spinal fluid, as I expected, but it’s a relief nonetheless. Tomorrow morning is our meeting with Jude’s oncologist. We’ll leave Jude at home so we can get a word in edge-wise, not be distracted, and not have to worry about him eavesdropping. Tomorrow night we have a call …
Jude is no dummy. He is a master manipulator and often gets what he wants from me by wearing me down by asking so many times or appealing or negotiating. I feel like I’m raising an attorney, but I want him to be a neurosurgeon instead. He is also homeschooled and we only ask him …
All along, until last Sunday, I had been firmly in the camp (BY MYSELF) of banking on the 2nd surgery being the cure, which it statistically probably should be. However, after receiving a scary email from Jude’s oncologist summarizing the few case studies, in which they talk about trying to “salvage” the patient after ependymoma …
Continue reading “Back to Banking on the Surgery Being the Cure”
 Jude, with the moustache he won at Children’s as his prize for enduring the spinal tap today. Â
This morning Jude has his spinal tap at the crack of dawn. We dressed the boys in normal, comfortable clothes last night instead of pajamas since we had to be out the door so early. I made sure that the doctor knew that the last spinal tap did not turn out well and asked him …