Update from Indiana

Today Jude and Andy met with the radiation doctor in Indiana and I participated via phone.  The most interesting things were:

  • Since Jude’s tumors have been in the left side of his head, he would have been better off if he had been left handed (since he’s right handed and left hemisphere dominated).  I don’t know for sure if Jude would have naturally ended up a rightie, but I have always encouraged the use of his right hand since the world is better set up for righties  Now I’m wondering if it’s not too late to switch him to his left hand since he hasn’t invested much into handwriting, etc. with his right hand.
  • Th doctor will radiate the entire tumor bed and the 5-8 millimeters around it.  Some brain tissue has collapsed into the 2 inch area where the tumors were located so he has to account for that.
  • The treatment will double Jude’s chance of a cure, from 30% without radiation to 70% chance with it.
  • The doctor still claims that having a brain tumor drops IQ 10 points and that brain surgery drops it 1-10 points and that the radiation only drops it 1-5 points.  He will be 4 cm away from the main intellectual area of the brain so cognitive side effects are unlikely, according to him.
  • Jude may suffer some peripheral vision loss and lose some visual integration ability (whatever that means).  But, maybe because Jude is young, he can rewire his brain to do this mysterious visual integration function elsewhere.
  • Jude will lose his hair where the radiation beams will enter his head, but it will most likely come back.
  • Jude’s hormone center will not be affected so no stunted growth should be expected.
  • There is a less than 5% chance of moderate hearing loss in the left ear.
  • There is a less than 5% chance of IQ change.
  • There is an increased risk of brain cancer due to the radiation by 1-5% chance, but he thinks it really is 1.5%.
  • The parietal lobe is “an easy place to bang on” and the 2nd best place to have a brain tumor.
  • At age 50-60, Jude will have to worry about stroke from the vascular changes due to radiation.
  • He will receive radiation for 15-30 minutes a day, Monday through Friday.
  • When I asked when he could get started, he said in 8-10 business days (earlier he had told us by the 9th or 10th).  I must have not sounded pleased and he asked me what I was thinking.  I told him that if we are going to do radiation, I wanted it started as soon as possible to increase its effectiveness.  If there are any cells left behind I don’t want them dividing and running amuck.  He then said that he would work an all-nighter tonight and work tomorrow on the 4th of July and I said, “okay.”  I probably should have thanked him for going the extra mile but I was feeling too irritated that he originally promised us a start date of the 9th or 10th and was trying to push it back a whole week.  I don’t feel too bad for him having to work overtime since, if he believes what he’s selling me, this radiation thing may be the cure little Jude needs.  Sounds like the earliest we will get in is the 12th.  But, we’ll get very little notice.  Maybe one day’s notice so we need to get packed and ready to go.