ACCEPTED BY DR. BURT

DATE

Compassionate basis

DATE

MORE PRAYERS NEEDED----Luke had an appointment with his Ophthalmologist today and it was not good new. Even poor Dr. Scott kept saying how sorry he was. Luke started saying "Its ok, Dr. its not your fault".

But his left eye, the bad eye is worse and his good eye is showing signs of going bad. So not what we wanted to hear.

Also have heard nothing from the insurance about the Stem Cell Transfer, which is needed more than ever now.

So tomorrow I am going to make some calls and send these eye reports up to Chicago. Maybe this bad news, will turn into good news and get the insurance to approve what he needs.

APRIL 26, 2016

It was a grueling day yesterday. Started at 7:00 a.m. in Chicago, Luke tried to eat breakfast, nothing tasted good but he got some apple juice down.

Then over to Northwestern University Hospital for his first app @ 8:15 for the 2D Echo, then 9:30 for the Pulmonary function test, then we ran up to the 18th floor for blood and urine. At this point Luke shares that he has not urinated all day and cannot give a sample. They give us a cup and we run to the 11:00 vein check and tour of how they will separate his stem cells out. I was getting ready to call the nurse about Luke, when he filled the cup. Yea!

I ran the cup back up to the 18th floor and Andrew and Luke ran to get his cane he left at the 8:15 appt. We met back up in the lobby.

After that we tried to have lunch but the 2 restaurants we went in made him sick, so we went to get his chest x-ray. They forgot about him (they had a tech leave in the middle of his shift). So I noticed people going in and coming out after he went back. It took forever, but we got that done.

So we left there and went to the neurosurgeon's appt at 1:00 p.m. to see about the hydrocephalus. He believes that is being caused by the lesions and was calling Dr Burt on how to proceed. I got the feeling that he was very interested in Luke's vision issues. Thank God for smart phones, I was able to pull up my e-mail and send them to the Doctors e-mail before he was done with Luke's exam. Then it was back to get his EKG. By this time it was 3:00.

We decided to head for home and eat outside of Chicago. Luke got sick at the restaurant we stopped at, that was at 6:00. Then he slept all the way home (8:30) and is still asleep. Slept 15 hours. I hope he eats when he wakes up.

The insurance said it would take 30 days after all test where in. Today he sees his psychologist and she is filling out that Psych Evaluation. So we should know soon.

This is only part of the pretesting Luke needs to have done, but all that the insurance asked for. He will go back up after approval for another MRI, dexterity testing with a nurse (baseline?), see Dr. Burt and Dr. B (neurologist @ NW).

If all goes as planned he and I will go up for harvesting. I do not know the timeline yet. Last Thursday I had no idea that on Monday we would be in Chicago doing pretesting. I think because we live so close and are flexible they can fit us in sooner than those needing to arrange a flight.