Nothing Feels "Normal"

When we were at home this afternoon, Liam and M were both very excited. Liam was running and tripped over the edge of the rug and bumped his head. He had a cry, little sister brought him his teddy and he was okay. Liam had a bump and a start of a bruise on his head, but off Liam went playing again.

I told the nurse about it when we got back, as when Liam's platelets are low, bleeding and bruising are a concern (platelets lead to blood clotting, so without them, excessive bleeding can occur). She got a doctor to check him out as well, just to make sure, and they ordered a CBC. Liam's platelets are 22, they were going to give him a transfusion if he was under 20, the doctor thinks he should be able to clot with 22. This probably means Liam will need a platelets transfusion a couple of times or more this time, last cycle he had 2 platelets transfusions.

You know I've been doing this too long when I am the one to request a type and cross match when they do his next bloodwork. (the type and cross match enables them to order compatible blood for a transfusion, Liam gets a special wrist band)

Looking forward to the day where we can laugh off a fall and bump.

Recovery Time & Old Movies

Even if Liam wasn't interested in Thanksgiving turkey, it was very nice to all be home at one time. We spent a whole day at home on Monday! Today Liam had an appointment at the clinic to get his blood counts done.

We are scheduled to do the final round of 3 high dose chemo with stem cell rescue starting Thursday October 19. Fingers crossed that we can sleep at home until then. I can't say we won't be visiting the hospital, as Liam will have checkups, a kidney function test and a hearing check, he gets both of those tests with each chemotherapy cycle. Liam won't get another MRI before the next cycle, I'm not sure exactly of the next one, likely shortly after the last chemo cycle.

Monday, Liam laid on the couch much of the day, he's really tired now. This is really the first time he's been this tired out. Today he spent a few hours here and there playing, but again was very tired. It's tough to see him like this, but he's just been such a trooper for so long, it was bound to happen with the high dose chemo. I pulled out some old VHS movies from the basement for him, Liam really liked both Bambi and The Little Mermaid.

Liam is also still having vomiting and diarrhea, the diarrhea has been non stop for 3 weeks, poor kid, but he gets it every time he gets antibiotics and he's been on antibiotics for 3 weeks. The vomiting is about once a day, despite all the Dexamethasone, Ondansetron (zofran) and Gravol he gets regularly.

For those interested, here are Liam's counts. The g-csf really did it's job! Liam's counts came up faster this cycle than last. Technically, Liam's counts are high enough to start the next cycle (he needs to have platelets > 75 and ANC > 750 to start), but I think they know we all need a bit of recovery time.

	Liam Oct 7	Liam Oct 9	Normal Range	When take action
White Blood Cells	1.6	41	4.0-14.0	n/a
Hemoglobin	123	125	110-157	<80
Platelets	23	118	150-400	<10-20
ANC	500	32800

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

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

Monday Clinic Visit

We saw Dr Lucie today, Liam is good to go to start chemo cycle 2 tomorrow. A little detail as to what our day looks like tomorrow:

10am Oncology outpatient clinic at the Children's Hospital

10:15am Liam gets blood drawn and connected to IV fluids

10:50am Liam gets general anesthetic

11:00am Lumbar puncture (to check on amount of cancer cells in spinal fluid - once per cycle)

Chemo injection into spinal fluid (takes about 2 minutes)

11:20am Cut Liam's nails - yea, we take advantage of his grogginess since he hates having his nails cut!

2:00pm-4:00pm Chemo through IV

Rest of the day/night - hang out while Liam gets IV fluids

This may all take place in the outpatient area, or we may be admitted to Unit 1 sometime after the lumbar puncture, it just depends on bed availability, as people are generally discharged later in the day. Liam will be restricted to his room (whether it is outpatient room or Unit 1), as he has a cough, to protect the other patients.

Friday Clinic Visit

Liam's blood counts are all on track today. He's got a cough, might be fighting off a cold, otherwise he's in good spirits, had a good day.

Weekly clinic visit

Liam's following the expected trend, his white blood cell count and ANC are going up now. Though, his platelets are a bit low again, we'll be checking again on Friday, and they'll decide if Liam is fit to start the next cycle of chemo on Tuesday next week.

Liam is loving his new haircut, he loves to feel his short hair. He is still playing all day... and still fighting naps, when he needs them most!

Quiet weekend in the hospital

Not much going on, yesterday Liam had some diarrhea (likely from the antibiotics), but as a result we can't leave the room. Liam's going to need a transfusion for Platelets today, it only takes 10-15 minutes and is through his IV. 

This is all a part of our new "normal", getting transfusions is expected. And unfortunately fevers are going to happen as well.

Liam had a fever Friday morning, then he didn't have a fever again until the afternoon. He didn't have a fever Saturday or so far this morning.

We won't be leaving the hospital until Liam's blood counts come back. Nadir is the expected period when the blood counts drop, should end about today, and his blood counts should start going up tomorrow.

Blood counts today:

	Liam's Count	Normal Range	When take action
White Blood Cells	0.1	4.0-14.0	n/a
Hemoglobin	100	110-157	<80
Platelets	31	150-400	<10-20
ANC	0

Blood counts today

Liam should not look as good as he does or have the energy he does with these numbers! Liam's colour isn't great, but he doesn't look very bad.

Liam is getting a blood transfusion for his hemoglobin, this takes about 3-4 hours. So now Liam is getting antibiotics and blood instead of just antibiotics.

Blood cell counts

We are learning the chemo cycle as we go, Liam is currently at the point where his counts are expected to be at the lowest. He has next to no white blood cells right now, so Liam will have troubles fighting off viruses, etc, right now. As a result, we're not having any play dates at the moment, and not going to too many public places. Except the hospital, a germ factory! They keep tight wraps on the oncology unit though, they try to keep the contagious people out as much as they can.