Hydrocephalus

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.

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!

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!

One Year Ago Today

The day that changed our lives forever. April 30, 2012 we took Liam to the emergency room at the Alberta Children's Hospital. Somehow the triage nurse "just knew". She immediately got Liam through to get a CT scan, and that day we found out Liam had a 4 cm tumor at the back of his head. The neurosurgeon cancelled all her surgeries the next day to make room for Liam's marathon surgery.

I cannot think about that time without feeling sick to my stomach. There are large chunks of time in the last year that are just a blur. I still often wake up and wonder if this all really happened.

I can't say how much I hate cancer for doing this to our 3 1/2 year old boy. I hate how awful cancer treatment is. Liam is facing a lifetime of tests and medical issues as a result of chemo and radiation.

But, having a lifetime of medical issues... means being alive. Even for all the awfulness, I am still so thankful for so many things. I am so thankful that Liam could make it through two major surgeries, and be doing so well. I am so thankful that Liam can run and jump and be a kid. I am so thankful for the amazing care we had. There are so many amazing healthcare professionals, volunteers and child life specialists that go above and beyond for our kids. We had many stressful points and bumps along the way, but treatment is now over. And we got to celebrate the year being over with an amazing wish trip for Liam.

Thank you everyone for everything over the last year. From Facebook messages, cards, gifts, food, donations for the playset in our backyard, to helping out with Madison. I just can't thank everyone enough, we are so grateful for all the support we've had over the year.

The top left picture is Liam on April 30, 2012 when he was admitted to Unit 3 to prepare him for surgery the next morning. He didn't know what was happening, but he knew things were not right. The picture on the right was taken yesterday.

Day 5 Wish Trip - Legoland

The kids loved Legoland! Liam is a big fan of Lego, and the Lego people. He has a big collection of them, from when he was getting his radiation treatments. When he got to pick a prize from the basket after his treatment, for a while he was picking Lego people almost every day!




Look Stacey, I got surfers! And Madison got a Snow White Lego.

   

Liam got a bit scared on some of the rides at Disney, there were a lot rides at Legoland that were perfect for him. Which worked well, since they were ones that Madison could go on as well. It appears as though she will be our thrill seeker!

Day 4 Wish Trip - Disney Hotel & Downtown Disney

We went for a character breakfast at Goofy's Kitchen at the Disneyland Hotel. It was very nice of Goofy to greet us at the door!




 It was the most amazing brunch, they had something for everyone. They had everything from mickey waffles, eggs, peanut butter and jam pizza, hot dogs to ice cream.

As we ate breakfast, different characters came through to meet the kids and take pictures.



















We wandered around Downtown Disney and picked up a few souvenirs. This is Madison with her new Minnie Baby and jewelry. Liam got a Mickey Lightning McQueen and Goofy Tow Mater.