Wednesday, October 31, 2012

Day +9 Going Home Today!

We got word that we can be discharged this afternoon!

Day +9 Counts Are on the Rise

Good news, Liam's white blood cell count is 1.3 and ANC is 700.

I haven't spoken to anyone about discharge yet, I don't know if this means we'll get discharged today, because of the fever and antibiotics. It will depend on which doctor is on today (some doctors are much more stingy about letting us go, even though we live 15 minutes from the hospital), but it also depends on what we can do about the antibiotics. On discharge day, it generally takes the whole day to get everything done to get out the door, which works to let Liam take part in Bingo and Halloween events.

See updated counts here.

Tuesday, October 30, 2012

What Next

We've gotten a lot of questions about what is next for Liam. To be honest, it's hard for us to think of what is next, we are so focused on getting through this cycle. The current cycle is 28 days, so Liam will need to go to clinic and get his blood counts done, at least a couple of times after we're discharged. Then we have our follow up with the neurosurgeon, hearing test, kidney test plus some others I can't remember at the moment.

At the end of the cycle, Liam will get an MRI and lumbar puncture to make sure there are no signs of disease (if that mystery spot that Liam had surgery on in August would be completely gone, that would be a big bonus and big relief). Based on these results they will recommend a course of radiation. We haven't met with the radiologist yet to find out how much radiation, how long of a course it would be or when it would start. I assume Liam has to also get his blood counts back to a certain level after chemo (after 28 days, the counts are still not "normal"), but how quick we start will also be determined from the MRI and lumbar puncture results.

Day +8 Counts Still Down

Liam's counts are still down, tomorrow is the day that we hope they'll be coming up.

As I mentioned, the daily baths and dressing changes are no longer required because we are far enough out of the chemo that required it. Last night, Liam said to Troy "Mommy didn't give me a bath today!" haha, keeps me honest!

Liam really knows how to take over the hospital room, I had no where to sit! :-) It takes some encouraging to get him to get out of bed, so I am just glad when I can get him out of bed to get him moving around.

Liam got a transfusion of platelets again today. His platelets were lower when we started chemo, so I'm not too surprised that he's needed them a couple of times. He also got IVIG (intravenous immune globulin), which required Liam to be "connected" to the IV for a couple of hours, with frequent blood pressure checks. This was a challenge because his sister and Grandma came to the hospital again and Liam really wanted to run around. We had a pizza party tonight, as it's Grandma's last night in Calgary, even though Liam won't eat pizza, he was pretty excited.

Fingers crossed for blood counts (ANC >=500) in the morning... although, not sure when we will be able to be discharged quite yet due to the fever and antibiotics, we'll see what they say tomorrow. It will be a big day though, it's bingo day and there is lots of fun planned for Halloween.

See updated counts here.

Monday, October 29, 2012

Day +7 Fever

Liam's fever continued today, he was up and down through the day and still is having times when he is nauseous.

Liam no longer has daily baths and dressing changes, so that is nice to have that over with.

It was a pretty quiet day, although Liam did get a bit of a play with Grandma and his sister this afternoon, this helped get Liam up and playing out of bed for a while.

This morning, Liam dressed up as Buzz, watched "Toy Story 2" and played with his Toy Story characters. Then later on he got out of his Buzz costume and watched "How to Train Your Dragon". This afternoon, Liam and M drove cars together, driving down the "hill" footstool. Child life provided us a mat for the floor, so it is a good place for them to play together.

Sunday, October 28, 2012


So disappointing, we are so close to Liam's counts coming up. Since Liam is neutropenic, he has no ability to fight infection, they start him on antibiotics immediately. They do blood cultures and try to find a specific cause for the fever, only one time has anything come up on the cultures.

Until the cultures come back, and his fever is down, we will not be going home.

Let's just hope this fever is not as persistent as the last.

Day +6 Day Pass & Beaded Journey

Liam's counts are still down (as expected), he's still neutropenic. See updated Counts.

Liam had a day pass today, another fun few hours at home.

At the hospital, we caught up on Liam's beads, he loves adding new beads, it is getting very long! It's not all procedures and chemo though, every time we do something fun we have special beads that we put on.

Liam's feeling pretty well today, so far, no getting sick today!

Saturday, October 27, 2012

Day +5

Liam's hemoglobins were low, he had a transfusion of red blood cells today.

He hasn't been as sick as yesterday, but still not feeling great in terms of the nausea. When he's feeling nauseous, it's hard to get him to have all his NG feeds. As per usual due to the chemo he's back to not eating or drinking anything by mouth again.

Liam had a short "day pass" to go home late this afternoon, it was later because it takes a while to do the red blood cell transfusion. Despite not feeling well, he still ran in circles with his sister at home.

Friday, October 26, 2012

Day +4

We did go home for a few hours this afternoon. Unfortunately Liam started vomiting this afternoon, he's gotten sick about 3 times today. He bounces right back though, gets cleaned up and back to playing!

Liam and his sister pushed the teddies around Liam's hospital room in this doll hospital bed, it was pretty funny to watch, poor teddies had a rough ride!

Child Life

I cannot say enough good things about the child life specialists for unit 1. This morning was parent coffee, while I had coffee in the Sunshine room, they came and kept Liam busy by putting an NG tube "in" teddy!

Liam's ANC is now down to 0, so the doctor we saw this morning (not our dr) didn't want us to go on a day pass today. Liam was very upset about it... then something happened (she spoke to our dr maybe) and they just told us we can go!

Thursday, October 25, 2012

Nothing Feels "Normal"

When we were at home this afternoon, Liam and M were both very excited. Liam was running and tripped over the edge of the rug and bumped his head. He had a cry, little sister brought him his teddy and he was okay. Liam had a bump and a start of a bruise on his head, but off Liam went playing again.

I told the nurse about it when we got back, as when Liam's platelets are low, bleeding and bruising are a concern (platelets lead to blood clotting, so without them, excessive bleeding can occur). She got a doctor to check him out as well, just to make sure, and they ordered a CBC. Liam's platelets are 22, they were going to give him a transfusion if he was under 20, the doctor thinks he should be able to clot with 22. This probably means Liam will need a platelets transfusion a couple of times or more this time, last cycle he had 2 platelets transfusions.

You know I've been doing this too long when I am the one to request a type and cross match when they do his next bloodwork. (the type and cross match enables them to order compatible blood for a transfusion, Liam gets a special wrist band)

Looking forward to the day where we can laugh off a fall and bump.

Day +3 Day Pass

Yay for a day pass today!

Liam is still feeling really good, he hasn't even had any vomiting in the last couple of days. He gets regular Granisitron and when he feels nauseous, we give Liam Gravol right away, which is a couple of times a day. Liam is not near as sick as he was at this time the previous 2 cycles. On day +3 both times, Liam was vomiting 2-3 times a day. I am really jinxing things here aren't I.....

We did Liam's regular bath and dressing change this morning, then we were able to leave just before noon and come back for IV g-csf at 4:00.

It's very nice to get home, Liam may play with the same cars and trains, but it is such a welcome change of scenery. Except that he forgot his new Lego Jessie and Bullseye at home, ugh.

As I'm typing this, completely out of the blue, Liam said "Mommy, next year I don't want you to forget the bouncy castle on my birthday"! I don't even think we talked about a bouncy castle for his 4th birthday, but with the central line and NG tube, it just was too stressful. He had one when he turned 3 though, I guess it was memorable. I cannot wait to get him the best bouncy castle possible next year!

Wednesday, October 24, 2012

Day +2

Another big day, Liam's still feeling really well. Grandma and little sister M came for a visit, her and Liam played pirates together.

Liam's current room is right across from the beautiful fish tank, he got to watch the fish being fed and the fish tank getting cleaned right from his bed. He was concerned Nemo wasn't getting enough food though.

Then, it is Wednesday, BINGO day, a big day on Unit 1. The bingo prize cart is unbelievable, Liam was very excited by his win of a Lego Toy Story set. When that cart comes around, it is no easy task for a 4 year old to pick something.

Liam's blood counts are still on the way down, Liam's white blood cells and ANC will go to 0 before they go back up again.

Liam Day +1 Liam Day +2 Normal Range When take action
White Blood Cells 23.5 16.6 4.0-14.0 n/a
Hemoglobin 94 95 110-157 <80
Platelets 65 42 150-400 <10-20
ANC 22900 16200

View Blood Cell Counts here.

Tuesday, October 23, 2012

Day +1

Not too much going on today. Liam's feeling well today, although when we're in the hospital he only wants to play in bed these days, but today he was up playing pirates on the day bed, or should I say "the ocean". When the pirate ship goes out to sea, the day bed is the ocean, I'm sure this is obvious :-)

We may have been able to get a day pass, but after the huge snowfall, I thought we might as well stay indoors until the chaos of the first big snow was over and the streets were plowed.

Things are quieter when Liam isn't getting IV antibiotics every couple of hours as was the case the last 2 cycles. Not to mention the tests and visits from Infectious Disease last cycle due to the persistent fever, without all that things are very quiet for us. If we can just stay fever free this time, that would make things go so much easier!

We have a bunch of little friends who play outside our room window.

Monday, October 22, 2012

Stem Cell Infusion Done

Pretty uneventful, Liam coughed and got a little sick, but the infusion was done quickly. Now Liam and his room smells of creamed corn, and Liam will smell like that for about a week! (from the preservative)

Liam is tired and resting now.

Today is "day 0" so now we just wait for Liam's blood cell counts to go up to get discharged, hopefully day +9 or +10.

Day 0 - Stem Cell Infusion Day

Just another morning of crafts and pirate ships.

Liam is still feeling really well this morning. I have been told that the effects are cumulative, so I was quite worried about this cycle, so far it has been easier than the last cycle when Liam had the fever that went on and on. Though Liam's blood counts have not gone down and the vomiting hasn't started - yet. They both will hit soon.

The stem cell infusion is this afternoon. The stem cell infusion is quite the ordeal, because they have to bring Liam's frozen stem cells from the "bank", it will be the same as the other 2 cycles. The issue we faced with the previous 2 cycles is Liam coughs and gets sick, a side effect of the preservative used to freeze the stem cells. 

During the infusion we have a room full of people. The person who brings the stem cells and thaws them, 1 nurse who does the infusion, 1 nurse who tracks everything that happens and usually a nurse watching/training. They give Liam Benadryl, Gravol, Grinisitron (anti-nausea), Ativan plus Liam's regular steroids, etc. But because of all the people in the room, Liam doesn't sleep, he forces himself to keep his eyes open. Maybe this being the third time, he can relax, ha.

Saturday, October 20, 2012

Last Day of Chemo

It's hard to believe, round 6 of chemo is done. Although it is the last day of chemo, the cycle has just started, so we're not celebrating yet, the stem cell rescue is on Monday. So far Liam hasn't had any nausea, previously it has started a few days after chemo.

What we are celebrating is that Liam ate a bowl of cereal, a whole cheese quesadilla, a chocolate quinoa cupcake and chocolate milk, all before 3pm! (You may notice chocolate remnants on his face in the picture)

The baths are going pretty well compared to last cycle. After every bath, we also have to do a central line dressing change, and unfortunately these are going horribly. It is critical that Liam lays down still while his central line gets cleaned, but he's been kicking, flailing and crying. Of course we cannot blame him, it is so hard by this point, not to mention he is tired from being woken up in the night to have a bath. We bought some new bribery toys from the dollar store, not sure if this will help or he'll just be mad that the toys aren't cars or trains!

Friday, October 19, 2012

Visit from a Stampeder Today!

Will DeSouza stopped by for a visit and signed a ball for Liam. Liam asked where he is from, he's Canadian but born in Brazil! He asked and if a girl Stampeder could visit instead, lol, I don't know if he means a cheerleader or what, he said he saw girl Stampeders before. Liam also asked if Will rides a horse.

For the non Canadians, the Stampeders is the Calgary CFL (grid iron) team. And for the Saskatchewanians, Liam still prefers his Gainer shirt!

Chemo Consolidation #3 of 3 Started

For whatever reason, chemo never seems to start on time. It doesn't really matter too much normally, except that the stem cell rescue on Monday does depend on the chemo starting on time, the stem cell rescue is done 48 hours after the chemo has ended. They were only 1 hour late this morning, chemo started at 11:00 am.

We will start the 6 hour baths today. Child Life already loaded us up with new bath toys! And my sisters also sent some fun stuff for the bath, so hopefully the baths don't have to be as painful this time. But hey, I am able to bath Liam while he is stomping and flailing around in the tub. Not exactly safe, but that's how it was a few times last time.

Lego Theme Today...

We have a Lego safari!

We were in the mall the other day and couldn't make it by the Lego store. Liam picked out this set and we decided to wait until we were at the hospital to open it. He was so patient to wait a few days before playing it, he was actually counting down the days until we came to the hospital! He asked many times if the Lego set was packed... he wasn't going to let us forget it.

Thursday, October 18, 2012

Go Ahead for Consolidation #3 of 3

Liam had a physical exam with the BMT (bone marrow transplant) doctor today, and they checked his blood counts. Everything looks good, so Liam will be admitted to Unit 1 tonight.

Friday Oct 19 - high dose chemo
Saturday Oct 20 - high dose chemo
Sunday Oct 21 - "rest day"
Monday Oct 22 - stem cell rescue

Then, wait until blood counts go up.

Here we go... again. The best case is that we could get discharged is Oct 31.

Tuesday, October 16, 2012

Playing "Soccer" on the Weeekend

video a video by Troy and Karla Gould on Flickr.
Liam has some mild Posterior Fossa Syndrome from his surgeries, but overall we are incredibly lucky at how well he has done. Liam's tumour was in the cerebellum, in the posterior fossa area of the brain, surgery here can cause problems with motor skills (many kids end up unable to walk, some unable to speak). Liam has some shaking in his hands, but is doing really well with his fine motor skills, through doing lots of small Lego activities, stickers and colouring.

Physio encourages us not to let Liam live in a bubble, as kids will fall! The way for his motor skills to improve is doing what kids do, running, jumping, climbing, etc, especially on uneven surfaces like grass.

Seeing Liam run around the yard is just so wonderful to see.

Sunday, October 14, 2012

This week

It's been a glorious 5 WHOLE days without having to go to the Children's Hospital.

This coming week we have Liam's regular audiology and kidney functioning tests. Then we have Liam's bloodwork and physical exam on Thursday to proceed with the third and final round of high dose chemo with stem cell rescue starting Friday. At this point, it is getting more heartbreaking seeing Liam getting better, then going back to knock him down again. It's harder on Liam every time, so it won't be surprising if this round is the hardest on him.

On a side note, Liam has been eating some food, which we love to see. He's been eating cereal and his old favourite Annie's White Cheddar Shells. He still needs his NG feeds, but it's great that he gets some eating practice in between chemo cycles.

Saturday, October 13, 2012

More energy every day

Liam's pretty proud of his Cars Lego! It appears as though if Liam is not holding Teddy, Teddy still manages to get in the picture.

Liam is up and playing a little more each day. Yesterday, Liam watched a movie for a few hours in the afternoon, but didn't sleep at all during the day. The rest of the day Liam was up playing.

Tuesday, October 9, 2012

Recovery Time & Old Movies

Even if Liam wasn't interested in Thanksgiving turkey, it was very nice to all be home at one time. We spent a whole day at home on Monday! Today Liam had an appointment at the clinic to get his blood counts done.

We are scheduled to do the final round of 3 high dose chemo with stem cell rescue starting Thursday October 19. Fingers crossed that we can sleep at home until then. I can't say we won't be visiting the hospital, as Liam will have checkups, a kidney function test and a hearing check, he gets both of those tests with each chemotherapy cycle. Liam won't get another MRI before the next cycle, I'm not sure exactly of the next one, likely shortly after the last chemo cycle.

Monday, Liam laid on the couch much of the day, he's really tired now. This is really the first time he's been this tired out. Today he spent a few hours here and there playing, but again was very tired. It's tough to see him like this, but he's just been such a trooper for so long, it was bound to happen with the high dose chemo. I pulled out some old VHS movies from the basement for him, Liam really liked both Bambi and The Little Mermaid.

Liam is also still having vomiting and diarrhea, the diarrhea has been non stop for 3 weeks, poor kid, but he gets it every time he gets antibiotics and he's been on antibiotics for 3 weeks. The vomiting is about once a day, despite all the Dexamethasone, Ondansetron (zofran) and Gravol he gets regularly.

For those interested, here are Liam's counts. The g-csf really did it's job! Liam's counts came up faster this cycle than last. Technically, Liam's counts are high enough to start the next cycle (he needs to have platelets > 75 and ANC > 750 to start), but I think they know we all need a bit of recovery time.

Liam Oct 7 Liam Oct 9 Normal Range When take action
White Blood Cells 1.6 41 4.0-14.0 n/a
Hemoglobin 123 125 110-157 <80
Platelets 23 118 150-400 <10-20
ANC 500 32800

Sunday, October 7, 2012


What a surprise, Liam's ANC was 500 this morning, so he was able to be discharged today.

I think they were trying to get kids discharged for Thanksgiving, it's going to be nice for everyone to be home for Thanksgiving dinner. It's been exactly 3 weeks that Liam's been in the hospital.

Friday, October 5, 2012

Vomiting and Transfusions

Just like last cycle, Liam is experiencing vomiting, they feel like he shouldn't be vomiting from chemotherapy this far out (it's been over a week), but he's following the same pattern as last time. Liam has been vomiting once every day, then yesterday 3 times, poor kid, he's got every anti-nausea medication they can give him.

Because all Liam's blood cell counts are pretty much at the bottom (we hope he is on the up turn now or soon), he is more tired today, he slept all morning and a few hours this afternoon. This week, the only times Liam has slept has been in the carseat on the way home or back to the hospital, so it's no wonder he is tired today, it's been a big deal going home on day passes, on top of having low blood counts.

This afternoon Liam got a platelets transfusion and a red blood cell transfusion. Hopefully the red blood cells will perk him up. I always say a little thank you to the bags of blood.

During the transfusion, they take Liam's blood pressure every 15 minutes, when he's tired he stops fighting the blood pressure cuff, normally he's not too keen to leave it on.

Wednesday, October 3, 2012

Happy About Going Home for a Few Hours

Dance time a video by Troy and Karla Gould on Flickr.
We are all happy about Liam being able to go home for a few hours every day.

We don't know if we'll be able to continue every day, but we'll take the opportunity when we can.

Monday, October 1, 2012

Feeling Well & Getting "Day Passes"

I haven't had a lot of time to post, we've been busy, because Liam has gotten 3 days of DAY PASSES! Depending on what time Liam needs IV antibiotics, we are able to get day passes for the hours in between antibiotics. It's not an actual "day", but a short time out of the hospital room is still great, Liam has 4 hour breaks between his antibiotics.

Saturday late afternoon, we all played at the hospital soccer field and park for a couple of hours. Sunday and today (Monday), we have taken Liam home for about 3 hours. It has been an awesome change of pace, glad we are getting this opportunity to get out for a little bit.

I will post pictures from our outings soon.