Thursday, February 28, 2013

Longer Morning at the Hospital than Expected...

After the last couple of days, wouldn't it be nice to have a quiet day.... no such luck!

Liam had an audiology appointment this morning. Liam's right ear has high pitch hearing loss. The good news is both ears are hearing well in the normal hearing range. Today's test gave the same results as 4 months ago. The chemo drug, cisplatin, is known to impact hearing. Liam has had many hearing exams throughout treatment since the cisplatin can affect his hearing now or later on. He'll continue to be monitored.

Liam was complaining about a headache this morning, which is very odd for him. Liam rarely complains about not feeling well at all. I had to carry him out of his hearing test because he didn't feel well.

On a side note, we went to pick up Madison from the "day care", and Emily (who used to work as child life specialist in oncology) ended up walking Madison around the hospital in a stroller the whole time. Madison was upset in the play area! Talk about personal service!

Liam wanted to lay down on the benches in the hallway. I decided this was enough for me to take him to see a doctor. I took Liam to the oncology clinic, we were lucky to be able to see a doctor very quickly. He did a neuro and physical exam and feels that Liam has a headache from the lumbar puncture. They take everything like this very seriously. Dr Ali quickly reviewed the MRI and lumbar puncture and also let me know that the initial lumbar puncture results look good as well. It was nice to hear again about the good results.

After clinic it was past noon, so Madison was hungry and screaming. We went to the car, and Liam proceeded to vomit all over himself in his car seat. Not the first time, but never fun. Then both kids screamed all the way home. We all ended up with headaches!

Liam still isn't feeling great, he hasn't eaten anything all day. Hydration is the biggest recommendation, but he won't drink anything. Assuming the effects are from the lumbar puncture, Liam should feel better tomorrow.

Wednesday, February 27, 2013

MRI Results Good News

It's been a long day of waiting to hear about the MRI. I paged the doctor at around 4:00 to find out the results.

Our primary oncologist, Dr Lucie is on vacation so we contacted Dr Strother. Dr Strother reviewed the MRI report and images. There is nothing new showing in the MRI, they checked Liam's brain and spine. The spot that Liam had surgery on in August is still there, but appears to be showing a bit less. Dr Strother is the one that told us about that spot in the first place, so he is very aware of it.

Liam still has increased fluid in his brain that needs monitoring. The neurosurgeon will also be reviewing the images to compare with the last ones. We won't get the results of the lumbar puncture for a week or so.

This is good news. I just wish I could feel the sense of relief that I should. 3 more months until the next scans.

We will have a more detailed discussion with Dr Lucie on Monday.

MRI & Lumbar Puncture Done

Liam is still recovering from anesthetic. He says he feels "trippy". It hurts him where they did the lumbar puncture when he walks. It almost always does for a few hours.

Tuesday, February 26, 2013

Keeping Busy Part 1 - Bake Cookies

And eat them in the morning. Why not.

Post Treatment Tests Tomorrow

Every 3 months we have a day that could potentially be the worst day of our lives. Again. Every 3 months Liam gets the MRI/lumbar puncture to find out if the evil cancer has decided to return. Every 3 months for 2 years, as this is statistically when the most relapses occur.

If there is a blessing, it is that the kids are oblivious. They are playing and having fun and have no idea what the MRI means. Their biggest worry is when they can't find the toy they want.

Liam is doing so great! He's happy, he's playing, he looks wonderful. If only this could be an indicator that the cancer is not back. Unfortunately, this doesn't tell us anything. If there was recurrence, he would not be showing any signs of it this soon.

I just hope the doctor can review the scans quickly so we can get results tomorrow. Unfortunately, our oncologist is on vacation. The head of oncology will be reviewing the scans, so I just hope he isn't too swamped tomorrow.

Friday, February 22, 2013

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.

Wednesday, February 20, 2013

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.

Monday, February 11, 2013

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.

Wednesday, February 6, 2013

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.

Monday, February 4, 2013

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.