Sunday, November 16, 2014

Good Weekend

We had a quiet weekend at home, trying to keep Liam to quiet activity. He stopped taking Tylenol... he is SO stubborn! He says the incision site hurts sometimes, but only if we ask. 

Liam was back to himself all weekend. It seems crazy that he could feel so good right after surgery. It makes me wonder about how much of his life (before diagnosis, during chemo & radiation) he has spent with pain, to take pain with such stride like he does.

We weren't sure, but Liam wants to go to school tomorrow. Liam really misses his friends, he's excited to see them and his teachers.

We had to wait to wash Liam's hair to give the stitches time to heal. We were able to tonight. After washing, Liam asked to comb his hair to cover his stitches. He is self conscious of his scars, he already wants to keep his hair longer. In Kindergarten, a classmate saw his scar and told him to go to the hospital to get it fixed. Liam takes the little things to heart.

Liam has dissolvable stitches, so he doesn't have to go see the doctor right away. We follow up with the surgeon in a month.

Thursday, November 13, 2014


Liam was discharged and we are home!

Liam's MRI was very quick. Everything looked good. They can see the hole that they "poked" in the ventricle wall, as expected. Hopefully with the next MRIs they see the third ventricle wall with less pressure on it, and that will mean it is working.

Liam is feeling very good. Around noon, he said he had a bit of a headache and he had a nap. Now that we are home, we have to try to keep him to "quiet activity". He just keeps happily playing non stop! Besides the surgery site, you would never know he had surgery.

Liam is doing well

Yesterday was indeed a long day. Liam handled the fasting up to the surgery pretty well. He was quite emotional, but he was pretty nervous too.

Surgery started around 12:30. We got paged at 2:30ish. Liam woke up grumpy and irritated with the IV in his hand. The wonderful nurse found him a DVD player and Star Wars III, which he wasn't supposed to watch until he was older. Troy tried to distract Liam from the movie during the scary parts. Liam was very happy about the movie.

Liam had no pain or discomfort. He had no pain medications, just tylenol. Liam was a bit wobbly walking to the bathroom, but nothing abnormal.

Unfortunately, the hospital was jam packed and we had to wait in day surgery recovery for a looong time. It is not a comfortable place to hang out when Liam is feeling fine. They got Liam moved to a bed in unit 3 at 5:30.

Liam had an uneventful night and is feeling good this morning.

They will do a "quick head MRI" today to make sure everything looks good. (no anesthetic required) I'm not sure if they'll know if the surgery actually worked yet, it might be a long term monitoring thing to know if the csf is flowing better and the pressure on the 3rd ventricle is relieved. (there was 2 years of scans leading up to this surgery) I'll find out more from our wonderful team, Dr Hader and Kelly today.

Wednesday, November 12, 2014

Out of surgery

Surgery went well. Liam is watching Star Wars and a bit grumpy, but otherwise doing great.

Tuesday, November 11, 2014


Liam had bloodwork done Monday in preparation for surgery. He gets a band on his wrist that he can't take off until after surgery. (What he is showing in the picture) This is for the identification, if he needs a blood transfusion. There should be no need for a transfusion, but they are prepared.

Liam has been packing a suitcase to prepare to go to the hospital, he said he was ready to go yesterday! Liam will still kick and scream when it is really time to go though, we know that. Who can blame him, he's already been through so much, and he's had a good break since treatment! Plus, he isn't allowed breakfast the morning of surgery, because of the anesthetic. That can make for a grumpy boy. We have to be at the hospital at 10:30 in the morning.

Liam has had a runny nose on and off since school started. It is up to the anesthesiologist to decide if Liam is fit for anesthetic. There is the chance the runny nose could delay surgery to another day, depending on how Liam is doing tomorrow.

It is weird, I am struggling to post to the blog again. I suppose because i associate it with Liam going through treatment, not exactly great memories. It is oddly hard for me to just write this post.

Having said that, I will try to update everyone as soon as I can when surgery is done.


Surgery for Liam's hydrocephalus is booked for Wednesday, Nov 12. The MRI did not show improvement in the increasing ventricle size caused by the blockage. It really sucks to have to choose between the risk of brain surgery or delay the surgery and potentially cause Liam brain damage from the long term pressure in his brain. The surgery is called laproscopic 3rd ventriculostomy. They poke a hole in the third ventricle to allow the csf to flow properly to relieve the pressure. This surgery is minor compared to the other surgeries Liam had. He should only be admitted for 1 or 2 nights. Being 6 yo now, Liam is much more aware (compared to the 5 surgeries he had at age 3 & 4), and he is pretty angry about it. F u cancer.