Change of Plans

Change of plans again. On Friday, Liam had another MRI, which showed something abnormal, it looks like a cyst in the same place as the original tumour, but they can’t tell what it actually is. They know it’s not solid, like the original tumour was, but we need to know what it is before going forward with treatment. 

We got the call from the oncologist last night, they are going to book surgery next week, we don’t know what day yet.

It takes a week after the surgery to get the pathology. If the pathology shows it's malignant (bad), we'll be starting a new plan for treatment (some combination of radiation and high dose chemo). If it's not malignant, we'll continue the finish current protocol (plan) with the high dose chemo.

We were meant to start the high dose chemo / stem cell rescue this week, but that is on hold.

It’s going to be the quietest week we’ve had in a long time, recently we’ve been at the hospital 3-4 days a week, this week we might only be there for appointments 1 day! (Although I shouldn’t jinx it, you never know what else might come up)

Never a Dull Day

Liam's central line requires a lot of maintenance and care. For those who don't know a central line is, it is a catheter that hangs from his chest that goes through a vein to his heart. Liam has it so he doesn't have to get IVs and needles every time they take blood, give him chemo, antibiotics or a blood transfusion, since he has multiple of these every week. Is is very handy, but also a huge source of stress for us, because of the risk of infection, etc.

Liam doesn't seem to notice it, he jumps around like it's just a part of him, it mainly freaks us out when he's jumping around or sliding on his stomach!

Last night we went to do the weekly dressing change and found that it had moved farther out of his chest. The "cuff" that used to be under his skin was outside. We had no idea how bad this was, but we tend to panic about everything with the central line. I paged the oncologist last night, emailed him a picture, he reassured us that it still looked safe (thank goodness, as this was around 9pm, needless to say we didn't want to go to the hospital). The doctor saw us right away this morning and did an xray to make sure it was still in place.

The good news is that it is still in the right place. The bad news is that because it moved, it just freaks us out even more!

http://en.wikipedia.org/wiki/Central_venous_catheter

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

Weekend at the Hospital

We haven't been discharged yet. Liam's body is taking more time this cycle to get his blood counts back, maybe due to whatever caused the fever, they didn't find any specific reason for the fever, but they can't check for everything. Liam is still feeling good and hasn't had a fever again. They are just waiting for his blood cell counts to come back up before letting us go home.

The doctor gave Liam a "day pass" to leave for a few hours. We figure going home would be too tough on Liam, he'd get upset at coming back to the hospital, so Troy took him to the park at the hospital. (I had a much needed break from the hospital at home with M)

Does this picture scream "freedom" or what!

A little golf, a little soccer, all just outside the hospital door. The backside of the hospital might be the windiest part of the city, but Liam didn't mind.

Four Letter Word

Sometimes it is really hard for me to not blog 4 letter words.

Liam is feeling great, he's not even connected to an IV now. He hasn't had any fever or signs of illness.

But, because Liam's ANC is 0, they won't let him go home, until he has ANC > 0. I am guessing this means we'll be discharged on Sunday, with a slim chance of late Saturday. And to top it off, he's in isolation, so Liam can't go to the play room this afternoon.

Our nurse knows how disappointed I am, and how energetic Liam is, so she brought him the trains and tracks to play with. Frustrating to miss a precious weekend at home!

Feeling Good

Liam started antibiotics and hasn't had a fever since. So, we are pretty much just waiting our 48 hours out.

Liam did had a blood transfusion last night, as his hemoglobin count was low. Liam is feeling good (he was feeling good yesterday too, despite the fever), we're just trying to keep ourselves entertained and trying to ignore the lovely weather outside.

Liam is also having a lot of baseline tests these days, before he has the high dose chemo (which starts at the end of July). Today was an eye appointment, the optometrist at the Children's Hospital was excellent. Liam had to get the dilating eye drops, he was NOT impressed with that. His eyes are in good shape, and his vision is good.

These are the tests that I know of. To be honest, they just hand me requisitions and we go for the tests, there are so many, there are probably more than this.
Optometrist (done - good)
Dentist (done - good)
Chest x-ray (done - good)
Bone age test x-ray (done - good)
Audiologist (done every 3 weeks, so far so good)
Kidney GFR (to do)
Echo/ECG (do do)

Week Interrupted

We were having a fun week, then damn you Mr Fever for visiting us this afternoon.

This is the same scenario we had previously. If Liam gets a fever while he's neutropenic, he has to be admitted to the hospital get IV antibiotics. He has no immune system this week, and we don't know what his body is fighting with the fever, but his body can't fight it at the moment.

We'll be in the hospital for a minimum of 48 hours. It'd be optimistic to think we'll get out Friday, but you never know.

There is always a bright side: a) Liam didn't get a fever during cycle 2, we are lucky it's been this long! With all 3 cycles of chemo, we've gotten out of the hospital on schedule b) It's air conditioned at the hospital, we don't have a/c at home, so it's hot in our house right now