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 for ideas to make it go more smoothly. He decided it would be a good idea to give Jude IV fluids since he’d have to have an IV anyway for anesthesia and having him well-hydrated would decrease the chances of headaches. He also suggested giving Jude anti-nausea medicine preemptively, which I agreed to.
Jude hated getting his IV put in today. They needed 4 people to restrain him and a worker down the hall said he has “lungs like a rock star.”  Poor, sweet darling! I’m glad that he is such a fighter though. He needs to be.
Given that the whole reason why we delayed the spinal tap until today was so that we could have the suture removal done under anesthesia, I was shocked when they told me that there were no orders for the suture removal. I said that they needed to track down someone to remove his sutures while he was under anesthesia or I would do it myself. Thankfully, they were able to find someone to remove the sutures. As an added bonus, they even agreed to remove a bad sliver that Jude got in his heel from stepping on a stick a couple days ago (Jude wouldn’t let me near it to take it out). I even took advantage of Jude sleeping and removed some adhesive left over from the surgery from his cheeks and forehead. I would have liked to have cleaned up the gunk behind his left ear, left over from surgery, but he was sleeping on the wrong side for me to do that job.
We should get the preliminary spinal tap results today and then final results in the next couple of days.
We got confirmation from Johns Hopkins that the tumor is Grade II, rather Grade III. It was still cancerous, but a less aggressive version, but potentially fatal, nonetheless.
We still have many unanswered questions, which is frustrating. I want answers and I want them now. We need to decide probably by Friday whether to pursue radiation. Jude would have to get fitted for his radiation mask next week in Indiana (10 days before treatment begins), since treatment must begin within 30 days of surgery for the best results. That means radiation would have to begin by July 6th.Â