9/08/05 Tests Today

Theo is having an EEG right now--he is not happy about all the people putting things all over his head. The EEG will take about 40 minutes and is just to check on seizure activity (which I don't expect the will see), so they can start tapering off the phenobarbitol that he is still on. Later tonight he will have an MRI--around 6:00 p.m.-- of his head and spine to check to be sure that there are no lesions on the spine. Because this cancer grows in the ventricles where the cerebral spinal fluid (CSF) is made and flows around the brain and spine, sometimes cells migrate to the spinal area. But again, I expect good results from the test and to hear that his spine looks wonderful. Other than those two things, nothing else is happening until chemo starts. There is nothing scheduled for tomorrow. I talked to Dr. Massey (one of our oncologists) this morning and she said it would be fine to start the chemo on Saturday instead of Friday. I am working tomorrow and did not want to miss the beginning of chemotherapy. She said that they will bring the chemo to him and do the drip in his room on the PICU. The nurse practitioner with her said that it will be fairly anti-climactic, but I don't care. I don't want to miss the first doses of chemo. After we get on a regular schedule and it becomes more routine, I won't have to be there every time, Jamie can come on his own, but until then, I want to be there with him. It's sad and a little scary to know that after a few months, it will be routine and almost normal to take my baby to have chemo. Not, of course, if I sit and really focus on the thought, it will never really feel normal, but it's amazing what you get used to. We've been here so long now that a lot of this hospital stuff--knowing the equipment, the schedule, the jargon, the nurses, the different groups of doctors, their routines, the cafeteria schedule, the gift shop hours, the security gaurds, etc. --are all normal things to me now.

Anyway--please keep praying and meditating and sending positive energy and thoughts. It never gets so normal that I stop praying. I just told a friend of ours that there are people from every spiritual tradition--and all over the world-- praying, meditating, focusing on Theo's healing and for support and strength for us. It is really wonderful.

For all the people out there who like to know specific things to pray for, please pray that he will get through his chemo without getting sick, pray that he will not contract any illnesses or infections (chemo makes your white blood count very low and therefore your immune system low--a cold can easily turn into pneumonia), pray that there be no cancer cells in his body--in his brain, on his spine, anyplace at all, that there be no damage to him at all as a result of the tumor or surgery or chemotherapy, and please pray that he be able to suck and swallow so he can eat without a tube. He no longer has a breathing tube down his throat, but he had one for about 10 days and was intubated again for surgery yesterday, so I'm sure his throat is still sore. Not to mention that he just doesn't feel all that well in general. But they are not happy with his sucking and swallowing. The neurologist is going to send an occupational therapist (OT) along with the speech/language therapist to help. If it doesn't get better soon they will want to put a feeding tube into his belly. The feed tube now goes into his nose, down his throat and into his belly. It can't stay there forever because those tubes can cause irritation of the nasal passages and can lead to sinus infection and other problems. A tube in his stomach would mean another surgery and that I will not be able to feed him. I hope so much to avoid any further surgeries--plus, I want to be able to feed him again and for Jamie to be able to give him a bottle. So, please keep up the prayers and good thoughts--I know he will be ok.

Thank you all again, for all your continuing support and love.

I will check in tomorrow and let you know how he is doing.

Love to you all,
Karla