More eating!

Might not be much, but we are so happy he is eating food!

Recovery

Liam is recovering so well, his temperature went up a little yesterday, so we were “on alert”, but it went down again. He’s having more quiet time right now, or at least we’re trying to get him to. Yesterday he only slept about a half an hour during the day. Troy and I are way more exhausted than he appears to be, not to mention that he gets up multiple times a night. Last night Liam was on his iPad with Troy reading, I went to see what they were doing and Troy was fast asleep, but not Liam.

Our oncologist had mentioned if we want to discuss the treatment plan and next steps that we can talk to her this week. I called yesterday and got a little lecture from a nurse I don’t know, “well, you should have talked to the dr on Monday, that was clinic day, I can’t guarantee you can talk to her.” Blah, blah, thank you for the lecture. Anyway, the doctor called me within 15 minutes and told us to come in. We spent 1 ½ hour with her and our primary nurse, I am so amazed and thankful that they take this kind of time to spend with us, our team is truly wonderful and supportive.

Liam will get checked out Thursday, if his incision has healed enough, we'll go ahead with the first of three high dose chemo cycles next week.

A big part of our challenge/confusion/concern is that Liam has had so many “blips” along the way, with the first CSF test being positive, but the 3 following were negative. (the first one negative result was before he got chemo so it's even more confusing) Then this lesion which is essentially biopsied, but not fully removed is a bit of an unknown. We can speculate all day long about what these mean, but both of these leave questions that they can’t give answers to. All we can really do is monitor and hope for the best.

Feeding Tube Out - Not on Purpose!

Not sure why, but little Miss M decided to swiftly remove Liam’s NG (feeding) tube! It came straight out, didn’t even make Liam gag or anything.

For a long while now, Liam has hardly eaten anything by mouth. When he tries something, you can tell it doesn’t taste good, the chemo has affected his taste.

We told Liam, if he eats, he doesn’t need to get another tube right away. For dinner he ate more than he's eaten in a long time, a 1/4 hot dog with ketchup, some sips of milk and a few spoonfuls of cheerios.

Our biggest concern is giving Liam's medicine, there is no fighting the medicine through his NG tube.

We'll see how long we can comfortably hold out. Liam's never been keen on eating, and would go long periods without eating before, so eating issues are not new. But, we also want him to continue recovering and also be in good shape for the high dose chemo.

Discharged

Liam was very anxious to go home today! Poor kid did not want to stop for a picture. He is walking so well, he doesn't need the wheelchair, he just still loves to ride in it.

Good News with Confusing News

A mostly uneventful day. Last night Liam had discomfort, likely due to a hematoma (bruised bump) on the back of his head. The hematoma isn't a problem, but uncomfortable and sore. As a result we'll be staying one more night in the hospital in case he has pain again, they won't send Liam home with morphine. Liam was very active today, we played dragons in the play room.

The good news is the pathology is negative for tumour cells.

The confusing news is the MRI still has remaining cells "lighting up" the MRI that Liam had after the surgery.

Our oncologist and neurosurgeon have been going back and forth about what it means all day... it's meant we've had some exhausting conversations.

The conclusion is that we don't know for sure what's showing in the MRI and they can speculate, but we won't know. It will just be something that will require monitoring with MRIs.

Because the pathology is negative, we'll continue the current protocol and start the first cycle of three high dose chemo with stem cell rescue, we don't have the exact start date yet.

Fast Recovery

Liam had a great day today. The day started out quiet, then the neurosurgeon (and team) came to see Liam, they are very impressed with his recovery, and said we could start reducing his pain medications and see how he does. Liam is so funny, he pretends to be asleep when they come in the room.

He got his IVs taken out and the dressing off of his stitches. The stitches are about the same length as the original scar was.

This afternoon, Liam saw the occupational therapist and physical therapist. Before this, Liam hadn't stood up much yet, then in his session, he stood up and played with trains for a half hour! He was weak, but pretty stable, then he walked a way down the hall after without support. The appointment was in the play room, they have good techniques to see if Liam is using both arms or favouring a side, etc. He appeared to be using both sides very well and moving his head back and forth well.

Depending on how tonight goes, we might get discharged tomorrow. Hard to believe a 4 year old can have a craniotomy on Tuesday and go home by Friday.

What next? We don't know yet. Liam needs 10-14 days of healing time, then when we get the pathology, the doctors will figure out what next.

Good day

Good, but busy day, will post update later.