Tuesday, July 31, 2012

Change of Plans

Change of plans again. On Friday, Liam had another MRI, which showed something abnormal, it looks like a cyst in the same place as the original tumour, but they can’t tell what it actually is. They know it’s not solid, like the original tumour was, but we need to know what it is before going forward with treatment. 

We got the call from the oncologist last night, they are going to book surgery next week, we don’t know what day yet.
It takes a week after the surgery to get the pathology. If the pathology shows it's malignant (bad), we'll be starting a new plan for treatment (some combination of radiation and high dose chemo). If it's not malignant, we'll continue the finish current protocol (plan) with the high dose chemo.

We were meant to start the high dose chemo / stem cell rescue this week, but that is on hold.
It’s going to be the quietest week we’ve had in a long time, recently we’ve been at the hospital 3-4 days a week, this week we might only be there for appointments 1 day! (Although I shouldn’t jinx it, you never know what else might come up)

Thursday, July 26, 2012

Never a Dull Day

Liam's central line requires a lot of maintenance and care. For those who don't know a central line is, it is a catheter that hangs from his chest that goes through a vein to his heart. Liam has it so he doesn't have to get IVs and needles every time they take blood, give him chemo, antibiotics or a blood transfusion, since he has multiple of these every week. Is is very handy, but also a huge source of stress for us, because of the risk of infection, etc.

Liam doesn't seem to notice it, he jumps around like it's just a part of him, it mainly freaks us out when he's jumping around or sliding on his stomach!

Last night we went to do the weekly dressing change and found that it had moved farther out of his chest. The "cuff" that used to be under his skin was outside. We had no idea how bad this was, but we tend to panic about everything with the central line. I paged the oncologist last night, emailed him a picture, he reassured us that it still looked safe (thank goodness, as this was around 9pm, needless to say we didn't want to go to the hospital). The doctor saw us right away this morning and did an xray to make sure it was still in place.

The good news is that it is still in the right place. The bad news is that because it moved, it just freaks us out even more!


Monday, July 23, 2012

Discharge Today

Liam's counts have come up, finally, we should be able to get discharged today. We have a busy day of tests first, then we outta here.

Liam had a platelets transfusion yesterday, so his platelets are up. The number they were waiting for were the white blood cells/ANC to come up, they aren't up much, but at least they are up, they tend to go up fast once they start.

Blood counts today:

Liam's Count Normal Range When take action
White Blood Cells 1.2 4.0-14.0 n/a
Hemoglobin 92 110-157 <80
Platelets 59 150-400 <10-20
ANC 600

Saturday, July 21, 2012

Weekend at the Hospital

We haven't been discharged yet. Liam's body is taking more time this cycle to get his blood counts back, maybe due to whatever caused the fever, they didn't find any specific reason for the fever, but they can't check for everything. Liam is still feeling good and hasn't had a fever again. They are just waiting for his blood cell counts to come back up before letting us go home.

The doctor gave Liam a "day pass" to leave for a few hours. We figure going home would be too tough on Liam, he'd get upset at coming back to the hospital, so Troy took him to the park at the hospital. (I had a much needed break from the hospital at home with M)

Does this picture scream "freedom" or what!

A little golf, a little soccer, all just outside the hospital door. The backside of the hospital might be the windiest part of the city, but Liam didn't mind.

Friday, July 20, 2012

Four Letter Word

Sometimes it is really hard for me to not blog 4 letter words.

Liam is feeling great, he's not even connected to an IV now. He hasn't had any fever or signs of illness.

But, because Liam's ANC is 0, they won't let him go home, until he has ANC > 0. I am guessing this means we'll be discharged on Sunday, with a slim chance of late Saturday. And to top it off, he's in isolation, so Liam can't go to the play room this afternoon.

Our nurse knows how disappointed I am, and how energetic Liam is, so she brought him the trains and tracks to play with. Frustrating to miss a precious weekend at home!

Thursday, July 19, 2012

Feeling Good

Liam started antibiotics and hasn't had a fever since. So, we are pretty much just waiting our 48 hours out.

Liam did had a blood transfusion last night, as his hemoglobin count was low. Liam is feeling good (he was feeling good yesterday too, despite the fever), we're just trying to keep ourselves entertained and trying to ignore the lovely weather outside.

Liam is also having a lot of baseline tests these days, before he has the high dose chemo (which starts at the end of July). Today was an eye appointment, the optometrist at the Children's Hospital was excellent. Liam had to get the dilating eye drops, he was NOT impressed with that. His eyes are in good shape, and his vision is good.

These are the tests that I know of. To be honest, they just hand me requisitions and we go for the tests, there are so many, there are probably more than this.
Optometrist (done - good)
Dentist (done - good)
Chest x-ray (done - good)
Bone age test x-ray (done - good)
Audiologist (done every 3 weeks, so far so good)
Kidney GFR (to do)
Echo/ECG (do do)

Wednesday, July 18, 2012

Week Interrupted

We were having a fun week, then damn you Mr Fever for visiting us this afternoon.

This is the same scenario we had previously. If Liam gets a fever while he's neutropenic, he has to be admitted to the hospital get IV antibiotics. He has no immune system this week, and we don't know what his body is fighting with the fever, but his body can't fight it at the moment.

We'll be in the hospital for a minimum of 48 hours. It'd be optimistic to think we'll get out Friday, but you never know.

There is always a bright side: a) Liam didn't get a fever during cycle 2, we are lucky it's been this long! With all 3 cycles of chemo, we've gotten out of the hospital on schedule b) It's air conditioned at the hospital, we don't have a/c at home, so it's hot in our house right now

Thursday, July 12, 2012

Cycle 3 Discharged

We were almost ready to leave the hospital, but Liam wanted to go to music therapy at 1:30, so I thought it was worth going, even though I was more READY to leave. Liam loves trying all the instruments and listening to the instructor sing, she sang "You've got a Friend in Me" from Toy Story, he especially loved that.

The window across from oncology is stampede themed this week, so we did our discharge picture here:


Liam doesn't quite fit in the suitcase, but he seems to be quite comfortable.

Wednesday, July 11, 2012

Chemo Day 3

Liam even had some fun today, Wednesday is Bingo day of course! Unfortunately though, vomiting has started. He's getting extra medicine now, hopefully we can manage the nausea.

Imagine how hard it is to explain to Liam why he is puking. We explained the doctor had to remove the tumour to stop the puking. And then to explain the medicine making him better is making him puke. When we're trying to get him to eat "by mouth", he says he doesn't want to eat because he will be sick, and we try to tell him the eating won't make him puke. It all sounds ridiculous when trying to explain it. Poor kid.

Happy 4th Birthday!

The child life specialists and nurses know how to brighten a child's day in the hospital. 

I woke up before Liam and put up his Thomas the train birthday decorations that we had at home up in his room. They  decorated Liam's door and all the nurses signed a birthday message for him. Everyone stopped in to wish him a happy birthday.

Then they opened up the play room in the morning for Liam, Grandma and Grandpa brought sister for a visitor, so they had a great play. Everyone got together and sang Liam happy birthday, and even brought him presents! He received a remote control car and stickers from Cars 2, a hit with Liam, of course.

Since it's Stampede time, two chuckwagon drivers also came to visit the kids at the hospital! Luke Tournier and Gary Gorst even joined in to sing happy birthday to Liam. 

Everyone made it a very special day for Liam.

Monday, July 9, 2012

Playroom Fun


After Liam woke from his nap in the clinic, I carried him to our room kicking and screaming. He is getting to know the routine, and he really didn't want to stay at the hospital. He doesn't mind going to appointments then going home.

Lucky, the playroom was open and Liam doesn't have any cough, runny nose, so he could go for a bit of a play. He enjoyed setting up some train tracks, this helped Liam calm down and be in a better mood for the rest of the day.

Chemo Cycle #3

"Help doctor, I have cars in my eyes!"

We have a lot of self entertainment sitting in exam rooms.

We saw the doctor this morning (actually, we saw the head oncologist, a fellow AND a resident today). We got Liam's blood counts, his platelets were questionable last week to start chemo, but they were way above the minimum number this morning, without having to have a transfusion for platelets this cycle.

Around noon Liam got his anesthetic, then his "routine" lumbar puncture and chemo injection into his CSF. That only takes a few minutes, he's having a nap now (1:15pm). After a small amount of anesthetic Liam tends to have a nap. The anesthesiologist makes sure she can wake him, monitors his vitals, and lets him nap. He was exhausted this morning, likely after all his birthday celebrating yesterday.

Cycle #3 is the same as the first 2 cycles, he has chemo today, Tuesday and Wednesday, then IV fluids until Thursday afternoon. Assuming all is good, we will go home Thursday.

Cycle #3 is the last of the induction chemo. Unfortunately next is the high dose chemo, we don't know what is in store for that until we get there, but it will be much more tough than we are experiencing now. There are 3 cycles of high dose chemo, 28 days each (the current is 21 days).

Friday, July 6, 2012


Part of Liam's protocol is to do MRI's along the way to check to see if any sneaky cancer cells have decided to hide out and reproduce, even with the chemo.

Liam had his first MRI since starting treatment (he had an MRI before surgery and an MRI the day after surgery), it doesn't show the tumour coming back right now, so that is some reassuring news.

I'm not sure how much this means in the long term, we don't have any details on the MRI results yet. We just got the quick summary, we will review the details with the doctor next week.

MRIs. Just another part of our "new normal".

Thursday, July 5, 2012

"Quiet" week

We managed to only be at the hospital 2 days this week. Although this meant being at appointments from 9:00-3:00 on Tuesday, it is nice to have whole days away from the hospital.

In between appointments today, we had 15 minutes to watch the mini Stampede parade held at the Children's Hospital today. The nurses were wonderful and got Liam's bloodwork done so we could catch the parade. Grandma and Grandpa brought Madison to watch too!

Liam is all prepped for starting chemo cycle 3 on Monday. We will be in the hospital for chemo Monday to Thursday next week.