Wednesday, May 15, 2013

Liam's "First" Hair Cut

First haircut before Liam's first birthday. He was not impressed with getting it cut!

He's had some crazy hair, this picture was taken April 2010.

Today was Liam's first hair cut after it grew back after treatment. It's really hard to believe he had no hair at Christmas. The stylist evened out the hair that had fallen out a second time from radiation at the lower back of his head, it is growing in nicely. He said he liked getting his haircut this time.

Follow Up with Neurosurgeon (3rd time)

We met with the neurosurgeon this morning. As usual, they are happy to see Liam and happy to see how well he's doing, considering how much he's gone through. Liam did all the neuro exercises really well. I can really see the changes in Liam's cooperation as he approaches 5 years old. A year ago doing the neuro exercises was hit and miss. We had a resident do Liam's examination, which was really interesting for us, because the neurosurgeon (Dr Hader) and the resident discussed some details we wouldn't otherwise hear.

The conclusion is we are not doing anything about the hydrocephalus right now. If Liam starts having any symptoms from the hydrocephalus, we will have to do something. Thankfully we don't have to wait for the next 3 month MRI to measure the level of fluid. Liam will go for a "quick" MRI in early July to see where it is at. This will be a less detailed than the MRI that is looking for disease, so it's very quick and won't require sedation.

There is a chance that the fluid could stabilize and not increase, which would be great and we wouldn't have to do anything. CSF is flowing through (or he'd have much bigger problems), but the buildup shows a partial blockage is causing CSF to not fully move from the fourth ventricle through the aqueduct. Since the amount has been increasing since January, it may keep increasing.

If Liam starts getting nausea/headaches/starts walking funny, or if the next scan shows an increase, they will do something to improve the CSF flow. There are 2 options. The first option is to use a scope and create a small hole in the ventricle to allow the CSF to flow (Endoscopic Third Ventriculostomy). The other is to put in a VP shunt, which is a tube that would go from Liam's brain and drain CSF into his stomach. He said Liam is a good candidate for the Endoscopic Third Ventriculostomy. This procedure takes about 20 minutes, and is a 1-2 night hospital stay.

Both options are considered low risk, but poking holes or putting tubes into his brain are still harsh for us to hear and of course both do have risks involved. How much would we love to be worrying about summer plans and not any of this!!

Tuesday, May 14, 2013

The Truth 365

Have you watched it yet? If not, you need to watch this video about childhood cancer. It's not easy to view, but it's the horrible truth about kids getting cancer:

Misconception #1: Childhood cancer is rare - it doesn't feel rare to me when there is a whole wing of the Alberta Children's Hospital full of kids getting treated.
Misconception #2: Children's cancer is like cancer in a small adult - not true, the cancers are different. Liam's brain tumor is rare in adults.
Misconception #3: Over the past 40 years, there have been dramatic improvements in childhood cancer. Is a 5 year survival rate something to celebrate for a 3 year old? Is cutting, poisoning and burning kids an improvement? Living a life of medical problems from the treatment? Many of the chemotherapy drugs are 40 years old.

Have I mentioned one of Liam's chemo drugs can cause Leukemia?
Radiation is the "gift that keeps on giving". Liam brain will continue to be damaged for many years.

I had NO idea of any of these things before I was thrown into this world of kids cancer.

Monday, May 13, 2013


As I mentioned before, Liam has hydrocephalus (a disruption in the balance between the flow or absorption of cerebrospinal fluid (CSF) in the brain). Specifically to Liam, the amount of fluid in the fourth ventricle of his brain keeps increasing. The amount of fluid should be moving and the ventricle should maintain the same level of fluid. Because the fluid is not moving like it should, the fourth ventricle is increasing.

So far, we don't think the hydrocephalus is significantly impacting Liam. Unfortunately, the enlarged ventricle can start causing pressure, and then cause damage to his brain.

I don't know if the neurosurgeon will suggest it is time to intervene. I don't know what options they would use to treat Liam yet. Off to the neurosurgeon we go again, our appointment is on Wednesday. We'll find out if they'll do something to fix the hydrocephalus now, or continue to monitor.

Thursday, May 9, 2013

MRI Results - Good News Again

I just received a call from Liam's oncologist, there is no sign of any new cancer growth in Liam's head or spine! (no lumbar puncture this time, another one in 3 months) Liam's oncologist, Dr Lucie did an initial review of the MRI with the radiologist. She did emphasize this is not the final report, but this puts our minds much more at ease.

The small unknown area that lit up the MRI back in July is even smaller again. It would be nice for this to completely go away so we don't have to keep watching it, but it's now so small it's hard to find in the image. This is good.

The only concern is the hydrocephalus in his left ventricle. In the last 2 scans, it has increased and the amount of fluid increased again with this MRI. We've been to the neurosurgeon after the last 2 scans to review with him, and both times he has said that we'll keep an eye on it. I don't know at what point they'll intervene. Dr Lucie sent the MRI to him to review again, so I'm sure I'll hear from him soon. The last couple times we've gone to see the neurosurgeon, the team (neurosurgeon, fellow, resident & nurse) pretty much smile at Liam jumping around and playing and say "he looks great to us". They keep a close eye on Liam's motor skills, whether he is getting headaches, and his eyes, these are the things that could be affected by the hydrocephalus. I don't see any of these things being affected. These are also the symptoms of Liam's tumor in the first place, so I am super sensitive to watching all of these things. If Liam would cooperate, I would do the neuro exam exercises every day!

We have an appointment for a physical exam with Liam's oncologist Monday and hopefully they'll have the final results to review.

This is the best Mother's Day present I could ask for.

MRI Done

Liam's MRI was moved to an earlier time at 9:00am, so that was nice. Liam didn't notice leaving the house without breakfast or milk, since we had to be there at 8:00am.

This was the first MRI with sedation since Liam's central line was taken out. The central line meant Liam didn't have to get a poke for anesthetic, they used the central line. This morning they gave Liam a bit if gas first, then put in the IV in his hand to use for the anesthetic. They also use the IV to inject contrast to get better images with the MRI.

The "before" picture is Liam and Madison in the room before the MRI. In the "after" picture, Liam is putting the mask on teddy to put teddy to sleep. The anesthesiologist was so good, she did the same for both Liam and teddy. Liam wasn't concerned at all going into the MRI, he did really well. Today he even said the "sleepy medicine" was ok. This is good since he's been talking a lot about how he doesn't like the "sleepy medicine".

The oncologist might not get back to us with the results until the end of day tomorrow. We realize (and are grateful) that we are not the highest priority of urgency now. We will have some patience and try to sleep tonight!

Monday, May 6, 2013

Scan time again already

Just when things almost feel "normal", it's scan time again. Liam's next MRI is this Thursday. Liam is happy and very much enjoying the warm weather. He just plays like everything is normal, unaware that he'll be getting anesthetic again this week. Unfortunately, he is starting to really hate the "sleepy medicine". We might be in for a bit of a bad day, as his MRI isn't until 1:00pm. Because of the anesthetic, he can't have any food or water that morning. Even though Liam doesn't want to eat, he loves his milk. When he can't have his milk, we will have one grumpy bear on our hands!