Morning in ICU

Liam had a fever last night, his temperature is back to normal now. He also has some swelling on his head, forming a bump, they're just keeping an eye on it. Liam was a bit uncomfortable, so they bumped his morphine a bit up in the night, but he's not on a high amount of morphine. (it seems crazy to me that he doesn't need a huge amount, kids are so resilient)

Liam's face was really swollen yesterday, he had a tough time opening one eye, but the swelling has gone down, he's still very puffy, but his eyes look a lot better. A combination of being face down during surgery and all the fluids through his IV cause a lot puffiness.

Liam woke up this morning and asked to have his new motorbike toy. He is talking to us... when he wants! I was trying to get him to talk to me, he wouldn't until I asked whether he wanted to watch the channel that was on or Treehouse, he was pretty adamant about putting on Treehouse! Then "Mom, I don't like this show!". It would normally bug me hearing him be fussy about tv channel/shows, but it sounds great right now.

The plan for today is to go for an MRI (we aren't booked, we just get called in). Then when Liam recovers from the anesthetic (for the MRI), we will move to Unit 3.

Liam moved to ICU

What a tortuous wait to see Liam, we are with him in the ICU now.

Liam is still sleeping, he's on a few pain medications. We've seen him wiggle his toes and move his head back and forth to get away from the doctor. Seeing him fight the doctor makes us feel good! We asked if he wanted teddy, he grabbed teddy and snuggled him close.

They're going to be constantly checking Liam's motor skills, no one can predict if he will have more or less set back than with the last surgery. Our biggest worry is Posterior Fossa Syndrome, which has a whole range of symptoms.

http://www.ncbi.nlm.nih.gov/m/pubmed/7495523/

Surgery done

The neurosurgeon spoke with us, everything went as well as they hoped with removing the lesion, we just have to wait and see how he is when he wakes up.

They were unable to tell anything about what the tumour is, we'll have to wait for the pathology report in a week.

Update

We haven't heard if Liam is out of surgery yet, but the nurse did come and tell us everything is going well.

Liam is in surgery now

They put him under for an MRI first, and then the surgery will be about three hours.

Surgery Tuesday

We met with Liam’s neurosurgeon who did the full resection of the tumour initially. Discussing surgery brought back difficult feelings of how hard the news was in the first place, and going through the surgery with so many unknowns, everything new to us. I asked the neurosurgeon if I was mistaken that the tumour was 4.5 cm, she replied “at least that”. Hard to believe, she showed us the original MRI again, Grade 4 of 4 Medulloblastoma right there written on the pathology report. 

The new "lesion" (cyst) is in the tumour bed of the original tumour, which was in the cerebellum, at the back of the head.

http://en.wikipedia.org/wiki/Cerebellum 

We had our appointment with the neurosurgeon, then we called our oncologist to talk with her again. I’m so thankful that they both were willing to spend so much time with us yesterday to talk to us.

Here we go again. Liam will go into surgery Tuesday morning to remove the 5 mm lesion and get a biopsy to find out what it is. Unfortunately, we’ll have to wait a week before we get the pathology.

I won’t likely post again this weekend as we will be busy having fun!

Change of Plans

Change of plans again. On Friday, Liam had another MRI, which showed something abnormal, it looks like a cyst in the same place as the original tumour, but they can’t tell what it actually is. They know it’s not solid, like the original tumour was, but we need to know what it is before going forward with treatment. 

We got the call from the oncologist last night, they are going to book surgery next week, we don’t know what day yet.

It takes a week after the surgery to get the pathology. If the pathology shows it's malignant (bad), we'll be starting a new plan for treatment (some combination of radiation and high dose chemo). If it's not malignant, we'll continue the finish current protocol (plan) with the high dose chemo.

We were meant to start the high dose chemo / stem cell rescue this week, but that is on hold.

It’s going to be the quietest week we’ve had in a long time, recently we’ve been at the hospital 3-4 days a week, this week we might only be there for appointments 1 day! (Although I shouldn’t jinx it, you never know what else might come up)