Coffee

I don't know what we would do without the Good Earth coffee shop at the hospital, they make great lattes with pretty designs in the milk froth and even when the line is long, they are fast! Not to mention they are such nice people.

A challenge in the hospital is that it is hard for us to leave Liam's room, it's tough for him to stay alone for long. When he has to go to the bathroom, we have to unplug his IV pole and drag it to the bathroom. And he's stuck in the same place, gosh forbid if a toy rolls or falls out of reach! The nurses are around, but they don't always hear him. Another Mom stopped at the door to talk to him one day last week when he was upset, that was super nice.

Every morning this week, I ask Liam, "can I go get a coffee, Liam?" He responds with a big "NO MOMMY, YOU CAN'T GO". So I tell him to let me know when I can go. 5 or so minutes later Liam will point to the door and yell "GO!" Poor kid just needs to have some control in his life, so I patiently (well, i try to be patient, despite being desperately tired) wait until he yells "GO!". It's pretty cute though, we find our way every day to change things up make things work.

Considering Liam has been in the same room 18 consecutive nights, and went a week without leaving the room once, he's doing so well.

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

Crafty Day

Liam is getting sick of the hospital room, but who can blame him. Right now, he hardly will speak to doctors and nurses, I think he gets sick of “what is your bear's name”, “who is your favourite Toy Story character”. Everyone is very sincere and tries really hard, but poor kid, tonight will be our 50^th night stay at the hospital.

By mistake, the people who draw blood, barged into the room with needle and rubber band and announced Liam needs a poke. WHOA, step away from my kid! Someone requested labwork and forgot to indicate that Liam has a central line. I quickly sent them packing to speak to the nurse, but Liam pays attention to everything, he knew who they were. That put him in a bad mood early on today. (it was a mistake, he did not need the poke)

On the other hand, this morning, Liam’s physio therapist and speech therapist (OT was unavailable today) came for his appointment in Liam’s room, he was so excited to see them, he loves to play with them. They are so amazing at coming up with games that he likes to play, while getting him to practice neck stretches, and testing his range of motion. The visit from them really perked Liam up this morning. 

Then we did some painting, Liam hasn't really liked painting much before, he really had fun this morning, his room is quickly getting decorated with his art.

This afternoon, Liam wanted to nap on the floor on his mat, and he kicked me out of the room! He actually wanted me to stay in the bathroom, but I told him I'd go into the hall instead. I also can’t blame him for being sick of me, we’ve spent a lot of time in this hospital room together. Not to mention that Troy is not feeling well, so we can't put Liam at risk of catching whatever he has, so he hasn't been here and I haven't left the hospital in days.

It turns out, we won’t be leaving the hospital this week. When Liam had his fever, he tested positive for a bacteria, and he requires a 10 day cycle of IV antibiotics for it, we are only 3 days into it.

Liam and his buddies

Feeling pretty well today.

It's been very handy having the 3 bears. The trouble is Liam still has his favourite, of course he can tell who is who.

Starting to feel better

Sorry for not posting, we're pretty exhausted and in survival mode.

Yesterday, Liam had a platelets transfusion and hemoglobin transfusion.

Liam was feeling better today, so far no vomiting yet today. He doesn't have his NG tube in, it came out while he was sick yesterday and they can't put it in while his platelets (for clotting) are low. He ate some cookies, cheese and nutrigrain bar today.

He hasn't had a fever again. Liam was up and playing quite a bit today, so he really seems to be feeling better. Nice to see him happily playing.

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.