Sunday, September 30, 2012

Day Pass Trip Home

Liam has been getting daily "day passes", we were finally brave enough to bring Liam home. We we worried that going home would mean a big "break down" to get Liam back to the hospital. But, we explained to Liam we were going home to pick up toys and have a bit of play, and he was ok going back to the hospital.

What a great break from the hospital 4 hours is! We are fortunate to be only 20 minutes away from the hospital so going home is an option for us. 

The doctors decide day by day whether a "day pass" is appropriate, depending on Liam's blood cell counts, and just in general, how Liam is doing. Liam's blood cell counts have not hit 0 yet, so the toughest days, in terms of how Liam feels are yet to come.

Saturday, September 29, 2012

Soccer Time

Liam ran and ran, we all looked with amazement at how well he was running and how much he ran around.

With Liam's day pass, we spent a couple of hours on the soccer field and at the playground at the hospital. This is the best physio therapy for Liam!

Friday, September 28, 2012

Stem Cell Infusion Done

Liam got his stem cells around 3:30 today. The preservative made him cough a little, but he also vomited this time, despite having many anti-nausea medications.

He is feeling ok now, back to playing, but no smiles for the camera.

Today is called "Day 0", so now we wait for Liam's blood counts to drop and come back up, hopefully in 10 days.

Liam's Bath Reward Chart

Teddy wanted a picture of the chart :-)

Thursday, September 27, 2012

Stickers & Painting

Liam plays most of the day, but he mostly wants to stay in bed to play, this was the only time he played out of bed today, at the painting easel.

Quiet Day in Between Chemo & Stem Cell Rescue

Liam's a very tired guy. Two nights of going to bed late because of his bath, then getting up in the night for a bath at 3am, and getting up several times to go to the bathroom. Thank goodness the bath and dressing change every 6 hours is over, now it will be daily.

Liam had one tiny bite of banana, and one tiny bite of cheese, but that was all yesterday and today, I don't know how he doesn't get hungry. Well, he does get very grumpy, somehow it's just not enough to get him to want to eat. I can only imagine the number of things the chemo is doing to his stomach and taste buds. Tonight, we put the NG tube back in.

Tomorrow is stem cell rescue day, so it will be a big day for the little guy.

Tonight is Liam's 12th night in the hospital this admission, it's getting to be a blur. Last time was 18 nights, so we are definitely going to exceed that this time. The total nights is now 63 nights that Liam's stayed in the hospital.

The best case that we can hope for, is to get discharged is in 11 days.

Wednesday, September 26, 2012

Chemo Day 2 Baths for Liam and Baby Teddy

Liam is not thrilled about his baths and dressing changes for his central line every 6 hours. At 4:00am he jumped up and down in the tub crying. I put on Backyardigans during his dressing change, because he needs to stay still, he needs something to keep his attention. Unfortunately though, he woke up a bit too much, and then after the Backyardigans were over, he needed a bedtime story at 4:30am!

Liam was tired this morning, he was pretty grumpy, thank goodness he had a good nap today, he needed it.

His skin is looking dark in spots, the thiotepa must be affecting him more this time. He is darker around his neck and on his stomach, they say it won't be permanent.

Liam could also be grumpy because he hasn't eaten all day. He has taken his oral medications by mouth with a bit of juice, but that is all.

Unfortunately, Liam's favourite blue bear also has to go home for a bath, which was a BIG problem today. The 2 other identical blue teddies just aren't the same! His favourite one is now called "baby teddy". When baby teddy went for a bath, Liam was very sad because he said baby teddy was alone and crying, and baby teddy needed him! But, now Liam has "mommy teddy", and seems to be fine this afternoon with "mommy teddy". The teddies having names is fairly new.

Tuesday, September 25, 2012

Consolidation Cycle #2 of 3 Started

Liam's fever has stayed away now for 24 hours, so the next cycle of chemo started this afternoon.

The doctors have to balance making sure Liam is healthy enough for the high dose chemotherapy, with minimizing the delay of the next cycle.

Today and tomorrow, Liam gets 4 hours of chemo both days. And as we did with consolidation cycle #1, Liam needs baths every 6 hours. I've talked to him about the baths and he is already crying about it, he hasn't even had his first bath yet! The middle of the night baths were the easiest last time, when he was half asleep, he protested less.

The BMT (bone marrow transplant) team will try to organize the stem cell rescue for Friday, but it requires coordination with the "bank", and will depend on the chemo starting on time tomorrow. Ideally, Liam will have the stem cell rescue on Friday, but it could end up being on Monday, as it did last time.

If Liam follows the same pattern as last time, the high dose chemotherapy didn't really hit too hard until a few days following the stem cell rescue day.

Liam also can't have any tape on him (due to the chemo being excreted from his skin), so we have to take out his feeding tube for the next couple of days. Since he got back to the hospital, Liam has not been eating anything by mouth, so here's hoping he gets hungry enough to actually eat something again!

Sunday, September 23, 2012

Fever returned

Well, Liam was off antibiotics for 24 hours and his fever returned. Nothing is testing positive, so they just don't know why he keeps getting the fever.

As a result, chemo hasn't started again.

We will see what the doctors have to say tomorrow.

Friday, September 21, 2012

Busy day of Play

Liam had a big day! First he had a visit from Grandma and sister, they set up train tracks and almost kind of played together.

Then this after Marc the music man came to Liam's room for music therapy. This time Liam was much quicker to warm up to him, Liam loves music.

Then Liam went to the play room - first time out of the room since we arrived Sunday! Friday is video game day in the play room, the volunteer patiently played Toy Story with Liam for an hour, lucky for Liam he was the only one in the play room, so he didn't have to take turns!

After video games, we got back to the room and did a huge puzzle. He wanted to do the puzzle, because he "wanted to scare the nurse when she came in". That is how I know he likes his nurse today! In the picture, Liam is showing teddy his work (the puzzle).

Liam hasn't had a fever again, so if he continues without a fever, he will get chemo Saturday and Sunday, then the stem cell rescue on Tuesday. 

Thursday, September 20, 2012

Finally less (no?) fever

Liam has almost made it a whole day without a fever, finally! They switched the type of antibiotics, but it's hard to say whether that was it, or it was just time for this *whatever it was* to go.

I'm sure it's not a coincidence, Liam played a little bit more today.

Not much else to report. If Liam goes without a fever for 48 hours, they may start his chemo on the weekend, or they might just wait until Monday (it seems to depend which doctor we speak to on that).

With some luck, maybe Liam can even leave the room, he's been on isolation this whole week, to protect the other kids on the unit. We admitted Sunday night, it's a long time for him to not leave the room at all.

Wednesday, September 19, 2012

Fever Persists

Liam went the whole afternoon yesterday without a fever, but it returned late afternoon and through the night.

First thing this morning he did not have a fever, but has a fever again now. Hopefully this means there is a progression to NO fever. No fever soon would be good.

Although, the way Liam was playing this morning, he was happy and looks really good, you really wouldn't have known he has a fever. Liam was very happy to have a visit from sister and Grandma this morning!

Tuesday, September 18, 2012

Liam's Journey - Summary of Treatment

I updated the page "Liam's Journey" (link at the top of the blog) to give those interested a better big picture understanding of what Liam's gone through so far, and what treatment is remaining. I will try to keep this updated as we go.

Go to Liam's Journey.

Liam's Middle of the Night Request

When Liam is fighting sleep, he repeats "I'm not tired, I'm not tired", he was doing this around 1:00am this morning. We know this means he is tired.

Troy stayed at the hospital last night, at about 1:00am Liam said "Dad, I'm not tired. I want chocolate milk, stickers and a brother". What an order!

p.s. Liam doesn't like chocolate milk
p.p.s. Liam is not getting a brother!

Still Has a Fever

Liam still has a fever, it's so frustrating to not know what is causing it. The doctors are pretty sure it's something viral, and he just happens to not have any symptoms that we can see. They have done blood, pee and poo cultures, almost every day, but so far the ones that have come back are negative.

Yesterday, we had a few "checks", including a venography. They injected Liam with dye and did a CT scan, to make sure there was nothing going on with Liam's veins. This looked good, no concerns.

The original plan was to start chemo today, so that won't happen now. Liam has to be fever free for 24 hours before they'll give the high dose chemo.

We aren't going to be discharged, so we now just wait for this fever to end.

On a side note, we are in a room at the end of the wing right now, and there are extra big windows, with a beautiful view of the mountains and the trees changing colours. The room is slightly bigger, there is a table and chair which makes things a bit more easy for myself. Not that we can complain, all the rooms in Unit 1 are large and bright, they are set up very well.

Sunday, September 16, 2012

Admitted to Hospital with Fever

Liam's fever still hasn't come down, he's had a fever almost non stop since noon Friday. Tonight he was around 39 degrees C when he got to the hospital for his daily antibiotics. After some Tylenol and waiting to see if his fever would come down, it only came down to around 38.3 C, so they decided it was best to keep Liam in the hospital.

Liam isn't showing any signs of illness, so it's frustrating to not know what could be causing his fever. His heart rate has also been higher than normal.

In the hospital sooner than we expected...

Friday, September 14, 2012

Another Fever & Next Steps

Liam had a fever again today. Today was our FIRST day this week that we had no planned reason to go to the hospital. Unfortunately, s a result of the fever, Liam had to go in tonight to get checked out and bloodwork done.

There is no obvious cause of the fever, but they decided to resume the antibiotics that Liam was on. These antibiotics are only available through IV, so we went to the hospital Sat through Wednesday to get the 15 minutes of antibiotics. We now have to continue going to the hospital again every day to continue the antibiotics until they see if Liam blood tests positive for any other bacteria or anything.

The nice thing is because Liam currently has his blood count up, he does have immunity, so we don't have to automatically stay at the hospital, like we have in the past when he's been neutropenic (no white blood cells to fight infection).

Assuming we don't end up admitting to the hospital this weekend (fingers crossed!), the next steps for Liam, are to proceed to Consolidation cycle #2 of 3.

Monday - Go to clinic and make sure Liam is fit to start
Monday night - Admit to Unit 1
Tuesday & Wednesday - Chemo (baths every 6 hours for a couple of days)
Monday Sept 24 - Stem Cell Rescue

Then, if cycle #2 follows #1, we stay in the hospital for 10 or so days after the stem cell rescue until Liam's blood cell counts come up.

We can hope that Liam's nausea and vomiting is not as bad this time, but that would be optimistic. Hopefully we can find the right combination of drugs that will help.

How is Liam doing / feeling?
Liam is definitely not as much of the energizer bunny as he has been. We have been getting him to walk to his appointments, and he does do fine, but he doesn't want to walk, he'd rather get a ride in the stroller. He is wanting to lay down more often through the day than he has.

Liam hasn't been eating much by mouth again, but his weight is staying around the same, at 15 kg. He's tolerating his NG feeds well, and isn't getting nauseous.

Before consolidation 1, Liam had some eyelashes left, those fell out now. His eyebrows are sparse, but he has some.

Liam has a meningocele (I think this is what it is called), a soft bump on the back of his head, where CSF leaked out after the last surgery. It is slowly getting smaller, it is not harmful and doesn't bother him, the CSF fluid slowly gets reabsorbed.

Liam's sleep varies every day, most days he naps, but not always.

MRI Great News

Liam is no stranger to MRIs these days. I am surprised at how much MRIs can tell you and not tell you.

The new area that "lit up" the MRI that resulted in Liam's August 7 surgery requires monitoring, because they didn't take the whole area out, due to the potential harm to Liam. (It was located in the cerebellar peduncle, for anyone that has knowledge of the brain)

The "lit up" area first showed up in July, then we had waited a month to see what happened to that area, and unfortunately in a follow up MRI at the end of July had shown some change. Not really growth, but "flare" in the MRI. This was why they did the surgery.

The good news from the surgery was that the pathology of that area was that it was likely necrosis (dying cells from original surgery) or something.

Liam had another MRI this week and the GREAT news is that the area that "lit up" the MRI has gotten smaller! Even unchanged would have been good news, but the area getting smaller is great news. This means the cells are healing or whatever, they can't say for sure.

Finally some good news without any uncertainty, questions or confusion!

Thursday, September 13, 2012

Day Out to Kananaskis

A big thanks to Jamie's Preschool for the day trip to Kananaskis! We took the Tim Horton's bus out to the Delta Lodge in Kanaskis for a great day.

Liam did some fishing, he loved it! He was a bit confused that he didn't catch any fish, but some other kids did catch a few fish, so we did see some in a bucket.

Liam was a bit tired that day, after fishing and a look at a fire truck, he had some hot dog and chips, then went to sleep on a chair, until it was time to go. 

Monday, September 10, 2012

Relaxed few days

We've had some fairly quiet days. Every day we have had to go to the hospital for 15 minutes of IV antibiotics. Today was the first day in a long time we visited the out patient clinic, since we've been inpatient in Unit 1 so long, Liam enjoys the toys in the waiting room (in the picture). After the antibiotics, we went for a quick play at the park at the Children's Hospital.

Liam is definitely more tired than he has been. Today, I insisted he walk through the hospital to the clinic (need to keep working those legs), he's been riding in the stroller lately, he was complaining that he was tired, but he did well. He's also wanting to watch more tv than he normally does.

Liam is eating a little "by mouth", but he is not keen on it. Last night he had some alphaghetti and quesidilla, but that's pretty much all for yesterday besides his tube feeds.

The plan is to start the second cycle of consolidation chemo on Tuesday Sept 17 (admit to Unit 1 the Sept 16 in the evening). Liam is pretty much following the "as expected" in terms of recovery, he's following the 28 day cycle.

Same as the previous cycle, Liam will get chemo on Tuesday Sept 17 & Wednesday Sept 18, then the stem cell rescue will be on Monday Sept 24. In this cycle, it took Liam 10 days after the stem cell rescue for his blood cell counts to come back, so we'll see if that is true again this time.

Saturday, September 8, 2012

Stupid Cold Bug

It was nice to get home... but then, Liam was up a lot in the night, the change always affects him, maybe he needs constant machines humming and beeping to stay asleep. At the hospital, he even stays asleep for his midnight and 4:00am blood pressure check.

Then when we woke up this morning, we had a house full of people with colds and sinus pain, argh! So, I'm trying to keep Liam away from everyone who is sneezing. So far, myself and Liam haven't gotten sore throat or sniffles yet. I am walking around the house with anti-bacterial wipes on everything.

Liam does have immunity, which is great if he does get sick. But, he just doesn't need to catch a cold right now. If the cold led to a fever, we'd be right back in the hospital.

Friday, September 7, 2012


The doctors worked hard to find an option for us to go home, we found out about 6:00pm. We were very unprepared, but managed to pack everything up in less time than it took the nurses to get us discharged.

The deal for going home is that we go back to the hospital for 15 minutes of IV antibiotics every day until the antibiotic cycle is done. We are ok with that.


I don't know what we would do without the Good Earth coffee shop at the hospital, they make great lattes with pretty designs in the milk froth and even when the line is long, they are fast! Not to mention they are such nice people.

A challenge in the hospital is that it is hard for us to leave Liam's room, it's tough for him to stay alone for long. When he has to go to the bathroom, we have to unplug his IV pole and drag it to the bathroom. And he's stuck in the same place, gosh forbid if a toy rolls or falls out of reach! The nurses are around, but they don't always hear him. Another Mom stopped at the door to talk to him one day last week when he was upset, that was super nice.

Every morning this week, I ask Liam, "can I go get a coffee, Liam?" He responds with a big "NO MOMMY, YOU CAN'T GO". So I tell him to let me know when I can go. 5 or so minutes later Liam will point to the door and yell "GO!" Poor kid just needs to have some control in his life, so I patiently (well, i try to be patient, despite being desperately tired) wait until he yells "GO!". It's pretty cute though, we find our way every day to change things up make things work.

Considering Liam has been in the same room 18 consecutive nights, and went a week without leaving the room once, he's doing so well.

Wednesday, September 5, 2012

Bingo Day & Blood Cell Counts on the Rise

Teddy was playing bingo today. Poor teddy fell asleep before bingo was over though, so much excitement! Good thing everyone gets prizes.

The real excitement is that Liam's blood counts are on the rise. The ones that the doctors want up are the white blood cells and ANC, ANC needs to be over 500 to be discharged, they should be over 500 tomorrow, but we can't get discharged due to the antibiotics Liam needs he can only get through IV. They are looking at options for us, best case is we get discharged on Friday, but I still wouldn't be surprised if that doesn't happen. They don't want to jeopardize Liam's health by not giving the appropriate antibiotics.

Liam's Count Normal Range When take action
White Blood Cells 1.7 4.0-14.0 n/a
Hemoglobin 112 110-157 <80
Platelets 19 150-400 <10-20
ANC 400

Tuesday, September 4, 2012

Crafty Day

Liam is getting sick of the hospital room, but who can blame him. Right now, he hardly will speak to doctors and nurses, I think he gets sick of “what is your bear's name”, “who is your favourite Toy Story character”. Everyone is very sincere and tries really hard, but poor kid, tonight will be our 50th night stay at the hospital.

By mistake, the people who draw blood, barged into the room with needle and rubber band and announced Liam needs a poke. WHOA, step away from my kid! Someone requested labwork and forgot to indicate that Liam has a central line. I quickly sent them packing to speak to the nurse, but Liam pays attention to everything, he knew who they were. That put him in a bad mood early on today. (it was a mistake, he did not need the poke)

On the other hand, this morning, Liam’s physio therapist and speech therapist (OT was unavailable today) came for his appointment in Liam’s room, he was so excited to see them, he loves to play with them. They are so amazing at coming up with games that he likes to play, while getting him to practice neck stretches, and testing his range of motion. The visit from them really perked Liam up this morning. 

Then we did some painting, Liam hasn't really liked painting much before, he really had fun this morning, his room is quickly getting decorated with his art.

This afternoon, Liam wanted to nap on the floor on his mat, and he kicked me out of the room! He actually wanted me to stay in the bathroom, but I told him I'd go into the hall instead. I also can’t blame him for being sick of me, we’ve spent a lot of time in this hospital room together. Not to mention that Troy is not feeling well, so we can't put Liam at risk of catching whatever he has, so he hasn't been here and I haven't left the hospital in days.

It turns out, we won’t be leaving the hospital this week. When Liam had his fever, he tested positive for a bacteria, and he requires a 10 day cycle of IV antibiotics for it, we are only 3 days into it.

Monday, September 3, 2012

Liam and his buddies

Feeling pretty well today.

It's been very handy having the 3 bears. The trouble is Liam still has his favourite, of course he can tell who is who.

Sunday, September 2, 2012

Starting to feel better

Sorry for not posting, we're pretty exhausted and in survival mode.

Yesterday, Liam had a platelets transfusion and hemoglobin transfusion.

Liam was feeling better today, so far no vomiting yet today. He doesn't have his NG tube in, it came out while he was sick yesterday and they can't put it in while his platelets (for clotting) are low. He ate some cookies, cheese and nutrigrain bar today.

He hasn't had a fever again. Liam was up and playing quite a bit today, so he really seems to be feeling better. Nice to see him happily playing.