Friday, June 29, 2012

Friday before long weekend

Liam's red blood cell count was low, so he got a transfusion this morning. It was an efficient morning, so we were out of the hospital by 1:00. While laying in the hospital bed, Liam was tired and cried out "Mom, my eyes are trying to close!", thankfully he gave in and had a nap.

It was a quiet week from a hospital perspective, we had 2 clinic visits, then the transfusion. Liam had a touch of fever last night and this morning, but they monitored him at the clinic and he didn't have fever while we were there. We will see if we can make it this whole weekend without going to the hospital (with a fever, it's minimum of 48 hours in the hospital), it wouldn't be too surprising if we did have to go.

The kids at the clinic received cute teddy bears with Canada Flag balloons for Canada Day. If we would have been in the clinic for the afternoon, they had entertainment and some of the Stampeders football players were going to meet the kids! That just wasn't enough to keep me there for the afternoon :-)

Some fun this week

We finally got the opportunity to check out Jamie's Preschool this week! It is a preschool for immune-compromised kids, so we could feel more at ease taking Liam.

We went on Tuesday, which was preschool and music class. Then on Thursday for gym class at Stars gymnastics centre.

Liam was absolutely so excited to go, he was beside himself. At the gymnastics centre, he just ran from mat to mat jumping and falling. They even had a bouncy castle, so he spent a good amount of the hour in there.

School is over for the summer, so we'll have to wait until September to go again.

Sunday, June 24, 2012

Questions about Feeding Tube

We get lots of questions about Liam's feeding tube. A while back, Liam got the all clear from the ear, nose and throat doctor, Liam is fully able to swallow and eat food. His left vocal cord wasn't closing all the way, but judging by Liam's voice now, it must be closing more, he still sounds a little "nasally" but he certainly is much louder and is getting less nasally sounding.

Liam was given the all clear to eat, and he was so excited to have chocolate pudding, milk and juice, he ate 5 bowls of cheerios in one sitting! Then he had his first cycle of chemo and that changed. We had the feeding tube out and tested whether Liam would eat, but something about the chemo made him decide he wasn't going to eat or drink. The chemo might him a funny or metallic taste in his mouth, he doesn't tell us, but Liam no longer will eat by mouth now at all.

Anyone who knows him, knows that Liam was never that keen on eating, so it probably didn't take much to turn him off. Besides, now he can sit and play with his cars with 2 hands and have his meal through his feeding tube! 

We are actually thankful for the feeding tube, Liam has gained a little weight in the last month, which is more than he's gained in a long time. The feeding tube does at least give us peace of mind that Liam's getting calories and he's not getting dehydrated. Both are critical while he's going through chemo, so at least that's one area that we don't have to worry about right now.

Friday, June 22, 2012

Cycle 2 Discharged

Liam had some vomiting today, but he's happy to go home. Sister came to visit today, he was pretty excited about that.

Thursday, June 21, 2012

Cycle 2 - Day 3

Liam is getting his last chemo today. Given Liam's energy, you wouldn't know he was on day 3 of chemo! He did have a nap (thank goodness, I need a break sometimes!), he has been playing non stop again all afternoon. The child life specialist brought Liam a floor mat so he could drive his cars on the floor, he's enjoying that, he's sitting on the floor by the door playing and watching the activity at the nurse's station.

We certainly didn't expect that Liam would be so energetic. Especially since, if he wanted, he could just watch tv and play the iPad all day long, but he still chooses to get up, play cars, trains and do his puzzles.

Liam's Beaded Journey

Kids Cancer Care Foundation of Alberta (KCCFA) has a Beaded Journey program that we're taking part in. We add a new bead to Liam's bead rope for all the tests, procedures, etc he Liam goes through.

In addition to MRIs, chemo, etc, when we have a fun day, or something special, I have some special beads and Liam picks which one he wants. We had a fun day last week playing outside in the tent and on the play set, Liam selected a pink dotted bead for that day. We also bought alphabet beads, and when his friends come to visit, we put on a bead with their initial. When family visits, we have beads for them as well, Liam's beaded journey starts back in March, when his symptoms first started, so the rope begins with a bead on for Auntie Ami's visit (yellow butterfly) and for Nana and Papa's visit (orange star). Grandpa & Grandma - blue star, Grandma and Alex - purple beads, Auntie Shauna - pink butterfly and Auntie Tanya - clear heart.

See their website Kids Cancer Care Foundation of Alberta

Wednesday, June 20, 2012

Child life specialists

The child life specialists are another group of amazing people at the Children's Hospital. They bring Liam Cars toys/blankets, today is a new Cars coloring easel.

At Liam's age, rotating activities is key, especially since we can't leave the room due to Liam's cough.

This afternoon the volunteers run a weekly Bingo game. The kids who can't leave their rooms get to play using a walkie talkie!

Tuesday, June 19, 2012

Day 1 Cycle 2 In Progress

Everything is going as planned today, we managed to get Liam's nails cut, yay! All that Liam goes through, and yes, cutting his nails is almost the most difficult thing to do.

After the anesthetic, Liam had a little nap, then he popped right up and started playing again.

Not much to report.

Monday, June 18, 2012

Monday Clinic Visit

We saw Dr Lucie today, Liam is good to go to start chemo cycle 2 tomorrow. A little detail as to what our day looks like tomorrow:
10am Oncology outpatient clinic at the Children's Hospital
10:15am Liam gets blood drawn and connected to IV fluids
10:50am Liam gets general anesthetic
11:00am Lumbar puncture (to check on amount of cancer cells in spinal fluid - once per cycle)
Chemo injection into spinal fluid (takes about 2 minutes)
11:20am Cut Liam's nails - yea, we take advantage of his grogginess since he hates having his nails cut!
2:00pm-4:00pm Chemo through IV
Rest of the day/night - hang out while Liam gets IV fluids

This may all take place in the outpatient area, or we may be admitted to Unit 1 sometime after the lumbar puncture, it just depends on bed availability, as people are generally discharged later in the day. Liam will be restricted to his room (whether it is outpatient room or Unit 1), as he has a cough, to protect the other patients.

Friday, June 15, 2012

Friday Clinic Visit

Liam's blood counts are all on track today. He's got a cough, might be fighting off a cold, otherwise he's in good spirits, had a good day.

Wednesday, June 13, 2012

Weekly clinic visit

Liam's following the expected trend, his white blood cell count and ANC are going up now. Though, his platelets are a bit low again, we'll be checking again on Friday, and they'll decide if Liam is fit to start the next cycle of chemo on Tuesday next week.

Liam is loving his new haircut, he loves to feel his short hair. He is still playing all day... and still fighting naps, when he needs them most!

Tuesday, June 12, 2012

The big cut

Troy & Liam by Troy and Karla Gould
The boys did amazing! Troy got his hair buzzed first, hoping that Liam would want to follow. Liam resisted at first, but in no time he was sitting patiently. Unfortunately, the clippers stopped charging, so we didn't actually get to finish Liam's hair! The boys seriously look so cute.

Liam finished the night rubbing his head and said "I don't need my hair". He amazes us.

More Pictures of Head Shaves

The before shot, Liam wasn't really keen on cutting his hair

Not sure what to think

After Picture

Maybe this isn't that bad...

After Picture

Liam said...

Last night I was cutting off Liam's hospital id band... he said "Don't worry, I'll get another one the next time I go to the hospital". Yup, unfortunately he is right about going back. Although, I'm not sure who he thought was worried about taking off the bands!

Monday, June 11, 2012

Bye bye beautiful hair?

I'm not sure how many kids can avoid losing their hair when they get chemo. Today, we are noticing a lot of Liam's hair falling out, not in clumps or anything (yet?), but a lot of hair on his shirt.

We keep talking about Liam's friend Cooper's Daddy participated in "Shave Your Lid for a Kid" for Kids Cancer Care last week. Thank you Kevin for letting Tracy get pictures, we keep showing Kevin's picture of the shave to Liam, hopefully this will help Liam out in the process.


Liam ran out of the hospital down the hallways, everyone who saw him smiled.

Might go home today

We have a few more "checks" and we might be good to go home today. Liam is feeling restless, and keeps asking if he can see his sister.

Sunday, June 10, 2012

Serious business in the hospital

Liam Mom Dad - Crop by Troy and Karla Gould


Quiet weekend in the hospital

Not much going on, yesterday Liam had some diarrhea (likely from the antibiotics), but as a result we can't leave the room. Liam's going to need a transfusion for Platelets today, it only takes 10-15 minutes and is through his IV. 

This is all a part of our new "normal", getting transfusions is expected. And unfortunately fevers are going to happen as well.

Liam had a fever Friday morning, then he didn't have a fever again until the afternoon. He didn't have a fever Saturday or so far this morning.

We won't be leaving the hospital until Liam's blood counts come back. Nadir is the expected period when the blood counts drop, should end about today, and his blood counts should start going up tomorrow.

Blood counts today:

Liam's Count Normal Range When take action
White Blood Cells 0.1 4.0-14.0 n/a
Hemoglobin 100 110-157 <80
Platelets 31 150-400 <10-20

Friday, June 8, 2012

Blood counts today

Liam should not look as good as he does or have the energy he does with these numbers! Liam's colour isn't great, but he doesn't look very bad.

Liam is getting a blood transfusion for his hemoglobin, this takes about 3-4 hours. So now Liam is getting antibiotics and blood instead of just antibiotics.

Woke with a fever

Liam woke up with a fever this morning, so off we went to the Children's Hospital. Liam got checked out by the doctor, he's still in a good mood, although he was extra cuddly this morning, our first sign something was wrong.

They treat fevers seriously when he doesn't have white blood cells, once Liam has a fever, they treat with antibiotics right away for at least 48 hours, so we'll be in the hospital for the weekend.

Thursday, June 7, 2012

Our amazing new play set

Thanks to everyone who contributed to our amazing new play set. I am so touched by everyone who contributed, thank you to my Mom for organizing. And thanks to Alex and my Dad for helping us build it, and thanks to Roberta and Tanya for helping me keep the children out of the yard during construction. It is timely since we now have to be aware of being in public places when Liam's white blood count is down.

We've had some rainy days, but today was very nice outside, we got the swings up and Liam was loving it in no time. We didn't think Liam was going to try the slide, it was a bit intimidating at first, Grandpa went with Liam the first couple times. After that, Liam went over and over and over...

Liam has always been a cautious guy, but he is a bit more cautious now, he does stumble easy, but he runs through the grass with no problem now.

I think we are going to get a LOT of use out of the play set! The challenge is when we actually need to be inside...

Blood cell counts

We are learning the chemo cycle as we go, Liam is currently at the point where his counts are expected to be at the lowest. He has next to no white blood cells right now, so Liam will have troubles fighting off viruses, etc, right now. As a result, we're not having any play dates at the moment, and not going to too many public places. Except the hospital, a germ factory! They keep tight wraps on the oncology unit though, they try to keep the contagious people out as much as they can.

Wednesday, June 6, 2012

Weekly Clinic Appointment

Liam woke up really happy, but then wanted to lay down, and was sick for a while this morning.
This afternoon Liam has his checkup, bloodwork, and his weekly chemo, the weekly chemo is just injected, so it is quick. Because of Liam's symptoms, they put us in isolation, in an exam room, but the doctor is happy with how Liam is doing.

As expected today, Liam's blood counts are low, he's on the verge of needing a blood transfusion, but because he's looking and feeling pretty good, they didn't do one today. If Liam starts feeling worse, we'll take him in for one, it takes 3-4 hours, they'll do it as outpatient.

Cycle 1 Day 8 of 21

Saturday, June 2, 2012


We left the hospital around 4:30, yay!

Chemo finished

Chemo finished last night around 12:30. Yesterday's chemo usually caused nausea and vomiting, but Liam hasn't felt sick (yet). He is just very tired and and grumpy, he wants to go home. If Liam keeps up as he is, we should get discharged at the end of the day today.

Friday, June 1, 2012

Day 3 of chemo

Day #3 of chemo still in progress. Liam spent the morning doing a lot of walking around exploring the unit. But he had some gravol (preventative) and is fast asleep now. He'll be getting the chemo until late tonight. He has the feeding tube again because he isn't too interested in eating.