Tuesday, March 19, 2013



This picture is of Liam at Stars Gymnastics Club. Jamie's Preschool attends Stars for a class once a week. It is so great for the kids to be able to take part in this!

A part of Liam's recovery has included neurotherapy, including PT, OT and speech therapy. Liam saw them daily when he had his first surgery to get him up and walking. When we first came home after his first surgery Liam could stand, but had troubles walking without falling. He had ataxia (shaking) for quite a while, and was weaker on his left side. Liam's tumour was in the cerebellum area of his brain. The cerebellum plays an important role in motor control, impacting Liam's motor skills.

After Liam's initial surgery, he was unable to swallow food/liquids. This was the original need for the feeding tube. The damage to Liam's vocal cord has also resulted in a change in his voice. Liam still speaks in a higher pitch than before his surgery and still has some nasality to his voice.

These monthly sessions are now Liam's favourite, he loves the therapists and all the activities they play. Sometimes we do PT/OT and Speech all in 1 hour, but often just 2 areas in one session.

PT (Physiotherapy)
As with everything, Liam has come very far with his gross motor skills. In therapy, I can see that Liam is benefiting from his Jamie's Preschool gymnastics class. He showed his physiotherapist that he can walk on a balance beam (assisted). Liam can jump forward with two feet very well compared to before. We can see Liam jumping farther every month. From our last appointment to today, Liam is doing much better walking up the stairs, one foot ahead of the other. We also do neck stretches, because he still tends to hold his head one way.

OT (Occupational therapy)
A few months ago, Liam didn't have the strength to squeeze a clothespin with one hand. We've been doing strengthening exercises, so he can now squeeze and pick up toys with tongs! This has given him the ability to hold the pencil so much more comfortably. Liam is not keen on drawing, so it isn't easy to get him to practice a lot. Similarly with the fine motor skills, a month ago Liam couldn't cut with scissors, but he is doing it on his own now.

It is great that Liam loves playing with Lego and putting beads on rope. These have both been very helpful with his fine motor skills.

Going forward, the occupational therapist is arranging to have some longer sessions dedicated to Liam's fine motor skills. They have someone experienced in working with preschoolers who will work with him to help Liam out with Kindergarten. Liam isn't alone at his age in prefering Lego to colouring. But we want to make sure Liam has the strength and ability in his hands, so he doesn't get frustrated.

Speech therapy
Last month, we did something a bit different for speech therapy. Liam played a few computer games to test his pitch. The game tested Liam's range of pitch and helps Liam understand high vs low. They were simple games where Liam spoke into a microphone and a character moved up or down the screen. Liam would have to adjust pitch to move the character and get the reward.

They tried doing a test to check how much Liam's voice is hypernasal. You can hear it when Liam speaks, and his voice is different than before his surgery. They put a mask on Liam's face which sits on his upper lip. He was scared to talk (it is a strange contraption) so the test didn't work. We'll try this again later.

Liam's biggest area of "challenge" at the moment is his "toileting". It's hard to pinpoint the reason for this setback, as he was well toilet trained until late summer/fall. Chemotherapy/antibiotics caused Liam a lot of diarrhea, it seems like the issues have continued ever since then. We've been working with the neuropsychologist and the PT team on this.

Someone wrote a good blog post on the "cost of surviving cancer", the writer's daughter also had Medulloblastoma, she speaks about her rehabilitation.
The Cost of Surviving Cancer - A Parents View

Info from BT Buddies

A few pieces of information from Brain Tumour (BT) Buddies:

Wednesday, March 6, 2013

Liam's Feeling Well

You wouldn't know Liam went through anything this morning, he is happily playing. He seems to be feeling great. He doesn't even have stitches at the insertion site, just 2 steri-strips.

Liam is very happy to add a new bear to his teddy bear family. "Baby teddy", Liam's favourite, required some stitches recently. Liam told the nurse today that baby teddy is feeling better.

On Our Way Home!

Liam's feeling good, and off we go.

Surgery done

Surgery is done, everything went well. We are just waiting for Liam to wake from a nap! He was up a few times in the night, so he was tired.

All ready to go

Tuesday, March 5, 2013

Update from Oncologist & Surgery Tomorrow

We met with Liam's primary oncologist, Dr Lucie on Monday. She reviewed the MRI and lumbar puncture, and confirmed that results from both are all clear! The neurosurgeon wants to meet again regarding the hydrocephalus. We are really hoping it's not still increasing with the last MRI, or they'll start talking about putting in a shunt. A shunt to drain excess CSF from the brain is not abnormal with this type of tumour, but it means another surgery.

We received the surgery time for tomorrow morning, bye, bye "noodles"! Liam will have to keep the area of the central line insertion clean and covered for a few weeks. He will still have a few weeks before he can go swimming.

Having the central line removed does mean that Liam will need an IV/poke for future anesthetic or blood tests. For the next MRI, we will ask that we try to do it without anesthetic, since Liam did it for radiation. If anyone suggests any blood tests anytime soon, they will get an earful about not having done it before the central line came out!

Sunday, March 3, 2013

Central Line

If everything goes to plan, this will be our last weekly dressing change and last weekly cap change for Liam's central line. If they do the heparin lock at clinic, then it will even be our last heparin lock.

We are trying to prep Liam for getting his central line out. At his age, a change like this can be difficult, his "noodles" have been a part of him since May 2012.

Liam watches his iPad every time we do his dressing change.

It is day surgery to get Liam's line out. We are scheduled for Wednesday, we don't know what time yet. We hope early, since Liam can't eat or drink before, due to the anesthesia.

Friday, March 1, 2013

Feeling better this morning

After I posted last night, Liam felt worse again. He was complaining that his head was hurting everywhere. He was even crying out "ow, my head". With all Liam has gone through, he's never cried out in pain like that before. Then he vomited again. After the doctor said "watch for meningitis" earlier today, we were just a tad on edge! There is a small risk of meningitis with the lumbar puncture.

I called the oncologist again last night. He reassured me that these symptoms sound very much like a lumbar puncture headache. You know it's a different world when the doctor asks if you have codeine or morphine for your child at home. (no, we don't have any) He also suggested we could give Liam caffeinated pop. Apparently, caffeine can relieve a lumbar puncture headache. Liam has never tried pop, but we weren't exactly keen on trying caffeine at night unless we were desperate.

Liam has already had 6 or 7 lumbar punctures. I'm glad he hasn't experienced this before. Thankfully, the protocol is 6 months until the next one. The doctor mentioned they can do some things different next time as well.

This morning, Liam "slept in" until 7:00. He promptly got up and started playing. That was very nice to see. After a couple of hours, he's a bit tired but he seems to be feeling good. Thankfully, he hasn't complained of head pain today so far. I just hope the vomiting hasn't set Liam back with the progress he's made with eating.