Closer to "Normal" Life

I find it amazing that our family went so long without getting colds. We are paying now, the family has spent all of February with on and off colds. Liam still has a lower immune system, but as usual, he handles it like nothing is different. Liam got a cold and seemed to have gotten over it. Unfortunately, the cold symptoms have returned. Liam is the only one in our family who doesn't change their pace when they get a cold. As usual there is no laying down and resting for this kid! It is a reminder that in Liam's life, he may not actually remember feeling good. A cold is nothing to him. 

It's scanxiety time again. For me, it starts a week before the MRI/lumbar puncture. Liam's 3 month MRI/lumbar puncture is on Wednesday. He gets anesthetic for it, but he does need to be healthy. This cold better not delay it!

In a few weeks, Liam has surgery scheduled to remove his central line. Liam is indifferent, not knowing the risks associated with having a catheter hanging from his body that goes straight to his heart. Troy and I are super aware and can't wait to have it removed. Not to mention the maintenance and cost of having to a "heparin lock" every other day. We inject heparin into his central line to keep it from clotting. We have to change the dressing/tape that covers it every week. We have to be super careful to keep it dry during Liam's bath, and there is no swimming with it. Having this removed will be a big step to a more normal life!

Having said all this, Liam is so used to it, he is a bit concerned when we talk about taking it out. In the picture, we have it taped up to him, normally the "noodles" just hang down to almost his waist. Just the curled part is covered with tape.

More Eating

Liam is making great progress with his eating! 3 weeks ago, Liam wasn't eating anything by mouth. He was only getting nutrition through his NG tube. Then Liam's NG tube came out unexpectedly. We thought we would be going to the clinic to get another one put in. (side note: oncology parents are very lucky that the nurses put NG tubes in. In other areas, parents are required to put in the tubes. Kudos to those parents)

Liam hates getting the tube in, it's a pretty horrible experience. We told Liam if he started eating that he wouldn't have to get a new tube. To our surprise, this was enough to start getting him to start taking some bites of food. Over the first week, Liam was nibbling a bit of food at each meal. Initially Liam would only eat cereal, hot dogs and alphaghetti. Not enough to maintain his weight, but it was a big step forward. We didn't try leaving his tube out during treatment as it was so critical for him to get nutrition.

After the first week, something changed. It was almost like Liam gained confidence that he wasn't going to vomit when he ate. Liam has been vomiting on and off for a year now. A year ago, it started due to the hydrocephalus caused by the tumour. Then Liam vomited on and off for 6 months due to chemo.

We keep weighing Liam, so far he hasn't lost any weight. We are doing a lot of little things to boost his calories in the food he does eat. In the last couple of days, Liam has even tried new foods (cheese and hamburger). This is a huge step forward that he is trying new things.

Liam does drink a lot of milk. He's getting more calories from milk than he should, but we'll take all the calories we can. I tried to mix some formula in with his milk. He noticed a change and almost stopped drinking milk altogether. Unfortunately, there is no hiding anything in his food. Liam knows when there is change and he won't eat the food when there is a change to it.

Getting Liam to eat is a full day effort, but we're doing all we can to get him enough calories.

Happy

NEGU - Never ever give up

The Jessie Rees Foundation is a wonderful foundation for pediatric cancer. Jessie was a 12 year old girl who lost her fight to cancer a year ago. She wanted to spread the message of NEGU to other fighting kids.

A part of Jessie's wish was to spread hope, joy and love by sending Joy Jars to other kids fighting cancer. Liam has received his Joy Jar full of things he loves from the Jessie Rees foundation!

Very cool idea, Liam loves it.

http://www.negu.org/
http://www.jessicajoyrees.com/my-project/
http://losangeles.cbslocal.com/tag/jessie-joy-rees/

 

Caring for Kids Radiothon

Wow, what a morning participating in the Caring for Kids Radiothon. After the interview was done, Liam said that he wanted to come back and do it again tomorrow!

I was very impressed at how organized the Radiothon was. We got there a bit before 10:00, checked in and Liam got a choice of stuffy from the treasure chest. Liam picked a teddy bear the exact same as one his sister has. Jody took Liam and introduced him to all the volunteers. I'm not sure Liam said too much, but nice that he did mingle.

During the interview, Liam sat at the microphone with the headphones on, driving his cars around the microphone. At one point I thought I was going to laugh. He took the headphones off, put them on his teddy and held teddy up to the microphone.

It is still incredibly hard to retell the story. It is still even hard for me to believe that this has consumed the last year of our lives. During the interview, Liam sat there playing like any 4 1/2 year old. It is hard to believe that he's been through so much.

We can't speak more highly about our experience at the Alberta Children's Hospital. So many people go above and beyond on a daily basis there. We are so lucky to have such wonderful facilities here. Please consider donating to the Radiothon.

Here are all the Radiothon Stories. Liam's story is posted at Feb 6 at 10:15am, or here is the a direct link Liam's Story.

To donate to the Caring for Kids Radiothon

Liam met Paul Brandt and got his autograph! Liam was thrilled to meet a cowboy. Paul Brandt is a great guy. He made sure to make time for everyone who wanted to meet him and get his autograph.

Eating & colds

It was bound to happen, Liam (and the rest of us) have gotten colds. Liam has had fevers, etc during chemo, but no cold symptoms the whole time. I just can't believe we were lucky enough for the colds to hit right after treatment was done. And not on a week that Liam had to have anesthesia, as they don't like to give anesthetic when kids have colds. So far Liam hasn't had a fever, which is good, since he still has his central line, he would have to go get IV antibiotics at the hospital. Liam has low immunity, but is not neutropenic (no immunity) so it is very nice not to have to panic about the sniffles... yay for normal!

On a separate note, Liam doesn't have his feeding tube! He had a random vomit late last week and the tube came out. Liam hates getting the tube in so much (it's pretty horrible), we are able to get him to eat by reminding him if he doesn't eat he'll be going to the hospital to get a tube. He is not eating well, but he is nibbling. Tonight has been the biggest meal so far, Liam ate more than 1 hit dog and about 5 fries! This was a lot for him, he eats such small bites, it takes him forever. We basically will let him eat anything he wants anytime, but even this doesn't tempt him much. We went to clinic today, Liam's weight is a bit down so we really are hoping we can get him to eat enough. It is a full time job to find what Liam will eat, he really doesn't care if he eats or not, and he refuses to try anything new.

We had clinic today and other than the hydrocephalus and sniffles, Liam is doing great. The doctor always tries to do neurological test "games" with him, but he is so stubborn, he almost always refuses to play with her. But, overall she is  happy with how he is doing and we don't even need to go for a regular exam for 1 month. For February, we "only" have appointments for PT/OT/speech, appointments with the nutritionist, the neurosurgeon, and MRI and lumbar puncture and an audiology test. Waiting for the MRI and lumbar puncture at the end of the month will be the most difficult, I even learned a term for it "scanxiety".

Weight May 23, 2012 15.2 kg (33.5 lbs)
Height May 23, 2012 99.3 cm (3 feet 3 in)

Weight Feb 4, 2013 14.9 kg (32.8 lbs)
Height Feb 4, 2013 103.6 cm  (3 feet 4.8 in)
Despite all the horrible chemo/radiation, Liam has grown taller!

Another thing to keep an eye on

When Liam had his original surgery to have the tumour removed, he also had an EVD to drain the fluid buildup from this brain, hydrocephalus. The tumour had restricted the movement of fluid. Within days, the amount of fluid resolved on it's own, with the EVD, so Liam didn't require a permanent shunt, which many kids do need.

Liam has had a higher amount of fluid buildup, but not enough to cause concern. The doctor decided to do a CT scan to see how the fluid level is.

As it turns out, there is more fluid now, although still not an urgent matter, we will be going back to the neurosurgeon to discuss. From what I understand, it will most likely be a "wait and see" type thing, but we will see what they say.