Rest Day

Today is "rest day" in between the two days of chemo and the stem cell transplant. It wasn't as quiet as we had hoped because Liam's central line has come out further again.

In July, Liam's central line "cuff" had come out:
http://www.strong-willedwarrior.blogspot.ca/2012/07/never-dull-day.html

The central line is supposed to heal into the skin and not move, but obviously Liam's hasn't. Now it came out another centimeter, we don't know why. They had to do an x-ray to make sure it is still in the correct place inside the vein going to his heart. It should be fine for the stem cell transplant tomorrow, but likely not ok for any further chemo. We'll discuss with the doctors what is the best plan, but nothing can really be done until Liam's blood cell counts are back up anyway. (to replace requires surgery)

Liam only ate a bowl of cereal and a banana today, so we'll be putting the NG tube back in tomorrow, but this is not unexpected.

Liam still seems to be feeling ok, although his energy level is down today, he spent more time in bed and on the iPad than normal for him.

We met the BMT (bone marrow transplant) physiotherapist, he's going to help us make sure Liam is getting around and not staying in bed too much in the next while. Liam has a mat in the room to play on the floor and he also brought a small chair for another place for Liam to sit outside of bed. We have seen OT/PT (occupational and physical therapy) for neurology regularly ever since Liam's original surgery. They are by far, Liam's favourite appointments, they have so many toys!

Day 2 High Dose Chemo Done

Just a quick update, as I am very tired and sleep deprived. Day 2 went uneventful. There was a mixup on dosage of chemo, so it started late again, but it really doesn't make that much difference when we are on the unit anyway. Liam has reduced kidney function due to previous chemo, so there are different calculations on how much Liam can tolerate. We just found about the reduced kidney function, he has had so many tests, and when the surgery came up, we just hadn't asked. We don't know what the impact of the kidney damage is, deal with cancer first, worry about that later, we get so much detail thrown at us every day, we can only handle so much.

Liam's baths have been going great, so much easier than at home! Go figure. He'll need a bath tonight at 3am again, then through tomorrow.

Liam is still feeling good now, but he will start feeling worse as the chemo does its job. We've kept up with a lot of anti-nausea, so at least he hasn't gotten sick and he's still eating some. (mostly cereal and chips still) They don't know how much the chemo will knock Liam out, we'll find out in the next 5 days how much he's impacted.

Day 1 High Dose Chemo Done

It's almost 10pm and Liam is still playing like it's just another day.

His chemo finished about 5:30 and we did his first bath at 9:00. We have to do the bath with minimal dressing on Liam's central line, so that is super stressful, but the nurses are great at it. Liam's nurse found a scuba diver and a few other Little People toys for the bath, that did the trick! Liam was a star and it all went well.

Now, let's hope the 3am bath goes almost that easy...

Baths

One of the joys of this round of chemo is the need for baths. The one chemo is excreted from Liam's skin and if it stays can burn, so he has to have a bath every 6 hours, including through the night for the next couple of days. Liam hates baths, so this should be interesting!

High Dose Chemo with Stem Cell Rescue

This week is cycle 1 of high dose chemotherapy with stem cell rescue/stem cell transplant.  It is going to be tougher on Liam than the first 3 induction cycles of chemo that Liam had. Liam is now “handed over” to the BMT (bone marrow transplant) doctors and nurses for this part of chemo.

This week:

Tuesday – 2 types of chemo

Wednesday – 2 types of chemo

Thursday – “rest day”

Friday - stem cell transplant

Back in May, Liam had the apheresis, where they connected him to a machine and got “4 bags” of stem cells from Liam. On Friday, Liam will be getting “1 bag” of his stem cells back. They have been frozen since May, on Friday they will thaw them in Liam’s room and he’ll get them back through his central line. There is less risk of rejection, because it is Liam’s own stem cells, but there is risk with reaction to the preservative used for freezing.

The chemo will destroy Liam’s bone marrow (to hopefully kill all cancer cells that remain) then his frozen cells are given back to him to start normal cell production. (I have no idea if I am saying this right)

Liam’s blood cell counts will all drop as expected, he will likely need transfusions as he has with his other chemo cycles. He will also get the G-CSF shots, as he did in the first 3 cycles. The C-CSF stimulates the blood cell production to help get his counts up.

After this week, Liam will be kept in the hospital for the recovery phase, they can’t say how long he will be in the hospital for, but Sept 4 might be the soonest Liam gets out. Best case, we get a week at home in between cycles, and the worst case is that we could stay in the hospital for all 3 cycles, which is 3 months.

These are 28 day cycles, but they could be shorter or longer, depending on how Liam does, they move onto the next cycle when the blood counts are back up.

Little Trooper

Liam loves the new Disney display at the hospital. He didn't want to leave home (completely understandable), but once we got to the hospital, he was happy.

I keep joking that Liam is a have-not eating "slop", because his main meals are Chips and Cheerios. (reference to Big Brother) He had chips and Cheerios again tonight.

Unfortunately, Liam is already looking skinnier at 14.8 kg (32.6 lbs), he's been consistently around 16 kg (35 lbs) since May. We are trying our best to keep him eating enough, but it is a challenge.

Go Ahead High Dose Chemo

We went to the clinic this morning to review the details of the high dose chemo cycles. There are 3 cycles, approximately 28 days apart, but this can be variable depending on Liam's blood counts.

We admit to unit 1 tonight, and start the chemo tomorrow.

I'll post more details about it later. Right now, it's play time with some packing in between.