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.

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.

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!

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!

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.

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.

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.

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!

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.

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.

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.

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.

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!

Discharged

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.

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

Fever

Liam had a tough night last night with more vomiting. They tried giving him Ativan, that wasn't fun and did not prevent more vomiting. Liam also likes to prove doctors wrong, instead of getting tired and sleeping with Ativan, he was up and feisty until after 1am. Then he was up and sick again until 4am. (Gravol doesn't make him sleep either)

As a result of being up half the night, he's slept a lot of the day. Although, he's had a lot of doctor visits, they wanted to rule out a few things before the weekend, so Liam had a very quick MRI scan to make sure fluid obstruction wasn't the reason for the vomiting. He did the MRI without anesthetic, despite the loud machine, he kept very still.

Then late this afternoon, Liam spiked a fever. While he's neutropenic (he has no white blood cells), he's unable to fight infection, so as soon as he gets a fever, they have to give him antibiotics right away to protect him. Liam has gotten a fever 2 out of 3 times when he was neutropenic before.

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.

Stem Cell Infusion Done

It was a big production of preparation, but Liam's got his stem cells back.

The preservative caused Liam some coughing, but nothing too bad. Liam could have just slept through it, his eyes were drooping, we could tell he was so tired, but he fought the sleep the whole time and hasn't given in yet. There were about 6 nurses in here during the stem cell infusion, he knew something was going on, there's no way he'd give in to sleep.

Also funny, Liam smells like creamed corn from the preservative. It's not an overly bad smell, just there.

Now is just hydration and waiting for Liam's blood counts to come back up.