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.

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!

Recovery Mode

Liam is in "recovery" mode right now, he has a lot of preventative medications while his blood cell counts are low, but otherwise we are not doing much medically at the moment, pretty much just waiting.

In previous chemo cycles, we could go home, while we wait for Liam's counts to come up. With high dose chemo with stem cell rescue, we need to wait for his counts to come up before we go home. If everything goes well, Liam's counts could go up in about a week, around 10 days from the stem cell rescue, which was Monday. He gets G-csf (granulocyte-colony stimulating factor- a growth factor that stimulates the bone marrow to make more white blood cells) every day. This is mega-expensive stuff, it's costly when we need to take it at home.

Unfortunately, Liam has had some vomiting and diarrhea every day. We're not totally certain the cause, whether it's the chemo, his stomach having troubles, not tolerating the NG feeds, etc. Whatever the reason, it sucks to see him like that! The doctors are changing things around to try to pinpoint the cause.

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.

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).

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.

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.

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.

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.

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.

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.

Day 2 of chemo

Day 2 of chemo done. Today was about 3 hours of chemo, again no side effects have shown up, yet. Liam is just very tired, he got up at 6:00am, then went back to sleep until late morning, and was asleep early tonight. We attended a music therapy session, Liam enjoyed that.

First day of Chemo

Pretty uneventful day. Liam had his first day of chemo, it was just a day of sitting around. So far Liam feels fine, fighting bedtime as he always does! Today was day 1 of 3 of chemo for this month. We are admitted to the Children's Hospital for 3 or 4 days depending on how Liam does.