Well, as we sort of expected, the CT Scan showed some residual tumor left in Asher's cerebellum. It appears to be ~5mmx~5mm or thereabouts and only shows up on one cross-section scan of the brain (at 5mm intervals).

The doctor seemed pretty disappointed to find it in there. He said that he scanned all over the head when he was in there the 2nd time and didn't see the tumor. He figures something is covering it up. I guess we need to just trust chemo to take care of it.

We didn't get to meet with the tumor team today as one of them was out of town and the other one just had morning hours today. We'll probably talk with them next week about the protocol they want to select to treat Asher with. We've decided that we're going to stay at PCH for the treatment instead of trying to find and travel to a different hospital/clinic throughout the country. It may limit some of the treatment options, but we trust in the team and doctors of PCH and in the COG that they are a member of, and they will do their knowledgable best to help Asher. I'm sure of that. If at any point, something happens to mess up our trust, we might do something about that, but not for now. All of our kid-watching support is in Arizona. We have a world-class hospital in Arizona. We have a world-renown neurosurgeon. I have my job here. It just makes the most sense to us. Thank you to everyone who's supplied information on all of the possible locations/treatments/protocols out there for me to research. It's really meant a lot that you've taken the time to care about someone you don't know at all. I know that you're praying for us.


Something is starting to bother me a little bit and I am not sure what to do about it yet. Asher appears to know what the various rooms in the hospital means and what doctors and nurses look like. When we get into rooms that he recognizes, he starts to get this defiant/mad look on his face and wont' look at us and doesn't appear to trust us.



He's starting to really be afraid, scared when they walk into the room, like they are all going to inflict pain on him. He was so mad today that he was poked to get an IV for the CT Scan and he cried/grabbed one of us each time a nurse walked into the room. We've tried to tell him what is going to happen there so that he is aware (no owies this time, just a small poke, they are just going to look at your bandaid) and will learn to trust us. We also learned about some sort of numbing cream (EMLA Cream) that may help Asher get through learning to trust us because the IV pokes won't hurt with the numbing cream on.

(EMLA is an anesthetic cream that numbs your skin. It's great if you need to have a needle stick for an IV, access your medi-port, or have an injection. It can also be used for procedures like spinal taps and bone marrow aspirations.
All you have to do is apply it to your skin about 1-2 hours before the procedure, cover it with an airtight dressing, and it will numb the area. You don't feel a thing (if you wait long enough). EMLA is only sold with a prescription.)

We do what we can to entertain him or distract him during the procedure, but it doesn't seem to be working all of the time, duh - he's 3.

Saturday is going to be a busy day. AT 9:30 we head to the hospital for an 11:30 surgery appointment in which they will move the shunt drain tube up a little bit because it's right up against an artery and could cause scar tissue (which in turn could cause a stroke down the line) and then they are going to put in one of those portoCath devices for chemo. They won't change what you see here, just where it feeds into the brain.




Asher basically can't eat anything prior to the surgery, so we kept him up until midnight tonight feeding him food, in the hopes that he'll be not hungry when he wakes up and will also sleep until it's time to go to the hospital.

Saturday is going to require sedation again so that they can do the surgeries and a follow-up spinal tap. The 10 minutes prior to sedation/anestesia is really hard on Asher and I normally bring him in and put him on the right apparatus so that it at least helps. But it's hard to see him get so upset and to not be able to do anything about it. It's good that he doesn't really understand, but sometimes I wish that I could say at least something to stop the tears.

We may get to come home "same day" if the surgery and sedation goes well. Asher always wakes up REALLY TERRIBLY from anestesia, so hopefully they can do a nice safe controlled wakeup.