When Liam is fighting sleep, he repeats "I'm not tired, I'm not tired", he was doing this around 1:00am this morning. We know this means he is tired.
Troy stayed at the hospital last night, at about 1:00am Liam said "Dad, I'm not tired. I want chocolate milk, stickers and a brother". What an order!
p.s. Liam doesn't like chocolate milk
p.p.s. Liam is not getting a brother!
Tuesday, September 18, 2012
Still Has a Fever
Liam still has a fever, it's so frustrating to not know what is causing it. The doctors are pretty sure it's something viral, and he just happens to not have any symptoms that we can see. They have done blood, pee and poo cultures, almost every day, but so far the ones that have come back are negative.
Yesterday, we had a few "checks", including a venography. They injected Liam with dye and did a CT scan, to make sure there was nothing going on with Liam's veins. This looked good, no concerns.
The original plan was to start chemo today, so that won't happen now. Liam has to be fever free for 24 hours before they'll give the high dose chemo.
We aren't going to be discharged, so we now just wait for this fever to end.
On a side note, we are in a room at the end of the wing right now, and there are extra big windows, with a beautiful view of the mountains and the trees changing colours. The room is slightly bigger, there is a table and chair which makes things a bit more easy for myself. Not that we can complain, all the rooms in Unit 1 are large and bright, they are set up very well.
Yesterday, we had a few "checks", including a venography. They injected Liam with dye and did a CT scan, to make sure there was nothing going on with Liam's veins. This looked good, no concerns.
The original plan was to start chemo today, so that won't happen now. Liam has to be fever free for 24 hours before they'll give the high dose chemo.
We aren't going to be discharged, so we now just wait for this fever to end.
On a side note, we are in a room at the end of the wing right now, and there are extra big windows, with a beautiful view of the mountains and the trees changing colours. The room is slightly bigger, there is a table and chair which makes things a bit more easy for myself. Not that we can complain, all the rooms in Unit 1 are large and bright, they are set up very well.
Sunday, September 16, 2012
Admitted to Hospital with Fever
Liam's fever still hasn't come down, he's had a fever almost non stop since noon Friday. Tonight he was around 39 degrees C when he got to the hospital for his daily antibiotics. After some Tylenol and waiting to see if his fever would come down, it only came down to around 38.3 C, so they decided it was best to keep Liam in the hospital.
Liam isn't showing any signs of illness, so it's frustrating to not know what could be causing his fever. His heart rate has also been higher than normal.
In the hospital sooner than we expected...
Liam isn't showing any signs of illness, so it's frustrating to not know what could be causing his fever. His heart rate has also been higher than normal.
In the hospital sooner than we expected...
Friday, September 14, 2012
Another Fever & Next Steps
Liam had a fever again today. Today was our FIRST day this week that we had no planned reason to go to the hospital. Unfortunately, s a result of the fever, Liam had to go in tonight to get checked out and bloodwork done.
There is no obvious cause of the fever, but they decided to resume the antibiotics that Liam was on. These antibiotics are only available through IV, so we went to the hospital Sat through Wednesday to get the 15 minutes of antibiotics. We now have to continue going to the hospital again every day to continue the antibiotics until they see if Liam blood tests positive for any other bacteria or anything.
The nice thing is because Liam currently has his blood count up, he does have immunity, so we don't have to automatically stay at the hospital, like we have in the past when he's been neutropenic (no white blood cells to fight infection).
Assuming we don't end up admitting to the hospital this weekend (fingers crossed!), the next steps for Liam, are to proceed to Consolidation cycle #2 of 3.
Monday - Go to clinic and make sure Liam is fit to start
Monday night - Admit to Unit 1
Tuesday & Wednesday - Chemo (baths every 6 hours for a couple of days)
Monday Sept 24 - Stem Cell Rescue
Then, if cycle #2 follows #1, we stay in the hospital for 10 or so days after the stem cell rescue until Liam's blood cell counts come up.
We can hope that Liam's nausea and vomiting is not as bad this time, but that would be optimistic. Hopefully we can find the right combination of drugs that will help.
How is Liam doing / feeling?
Liam is definitely not as much of the energizer bunny as he has been. We have been getting him to walk to his appointments, and he does do fine, but he doesn't want to walk, he'd rather get a ride in the stroller. He is wanting to lay down more often through the day than he has.
Liam hasn't been eating much by mouth again, but his weight is staying around the same, at 15 kg. He's tolerating his NG feeds well, and isn't getting nauseous.
Before consolidation 1, Liam had some eyelashes left, those fell out now. His eyebrows are sparse, but he has some.
Liam has a meningocele (I think this is what it is called), a soft bump on the back of his head, where CSF leaked out after the last surgery. It is slowly getting smaller, it is not harmful and doesn't bother him, the CSF fluid slowly gets reabsorbed.
Liam's sleep varies every day, most days he naps, but not always.
There is no obvious cause of the fever, but they decided to resume the antibiotics that Liam was on. These antibiotics are only available through IV, so we went to the hospital Sat through Wednesday to get the 15 minutes of antibiotics. We now have to continue going to the hospital again every day to continue the antibiotics until they see if Liam blood tests positive for any other bacteria or anything.
The nice thing is because Liam currently has his blood count up, he does have immunity, so we don't have to automatically stay at the hospital, like we have in the past when he's been neutropenic (no white blood cells to fight infection).
Assuming we don't end up admitting to the hospital this weekend (fingers crossed!), the next steps for Liam, are to proceed to Consolidation cycle #2 of 3.
Monday - Go to clinic and make sure Liam is fit to start
Monday night - Admit to Unit 1
Tuesday & Wednesday - Chemo (baths every 6 hours for a couple of days)
Monday Sept 24 - Stem Cell Rescue
Then, if cycle #2 follows #1, we stay in the hospital for 10 or so days after the stem cell rescue until Liam's blood cell counts come up.
We can hope that Liam's nausea and vomiting is not as bad this time, but that would be optimistic. Hopefully we can find the right combination of drugs that will help.
How is Liam doing / feeling?
Liam is definitely not as much of the energizer bunny as he has been. We have been getting him to walk to his appointments, and he does do fine, but he doesn't want to walk, he'd rather get a ride in the stroller. He is wanting to lay down more often through the day than he has.
Liam hasn't been eating much by mouth again, but his weight is staying around the same, at 15 kg. He's tolerating his NG feeds well, and isn't getting nauseous.
Before consolidation 1, Liam had some eyelashes left, those fell out now. His eyebrows are sparse, but he has some.
Liam has a meningocele (I think this is what it is called), a soft bump on the back of his head, where CSF leaked out after the last surgery. It is slowly getting smaller, it is not harmful and doesn't bother him, the CSF fluid slowly gets reabsorbed.
Liam's sleep varies every day, most days he naps, but not always.
MRI Great News
Liam is no stranger to MRIs these days. I am surprised at how much MRIs can tell you and not tell you.
The new area that "lit up" the MRI that resulted in Liam's August 7 surgery requires monitoring, because they didn't take the whole area out, due to the potential harm to Liam. (It was located in the cerebellar peduncle, for anyone that has knowledge of the brain)
The "lit up" area first showed up in July, then we had waited a month to see what happened to that area, and unfortunately in a follow up MRI at the end of July had shown some change. Not really growth, but "flare" in the MRI. This was why they did the surgery.
The good news from the surgery was that the pathology of that area was that it was likely necrosis (dying cells from original surgery) or something.
Liam had another MRI this week and the GREAT news is that the area that "lit up" the MRI has gotten smaller! Even unchanged would have been good news, but the area getting smaller is great news. This means the cells are healing or whatever, they can't say for sure.
Finally some good news without any uncertainty, questions or confusion!
The new area that "lit up" the MRI that resulted in Liam's August 7 surgery requires monitoring, because they didn't take the whole area out, due to the potential harm to Liam. (It was located in the cerebellar peduncle, for anyone that has knowledge of the brain)
The "lit up" area first showed up in July, then we had waited a month to see what happened to that area, and unfortunately in a follow up MRI at the end of July had shown some change. Not really growth, but "flare" in the MRI. This was why they did the surgery.
The good news from the surgery was that the pathology of that area was that it was likely necrosis (dying cells from original surgery) or something.
Liam had another MRI this week and the GREAT news is that the area that "lit up" the MRI has gotten smaller! Even unchanged would have been good news, but the area getting smaller is great news. This means the cells are healing or whatever, they can't say for sure.
Finally some good news without any uncertainty, questions or confusion!
Thursday, September 13, 2012
Day Out to Kananaskis
A big thanks to Jamie's Preschool for the day trip to Kananaskis! We took the Tim Horton's bus out to the Delta Lodge in Kanaskis for a great day.
Liam did some fishing, he loved it! He was a bit confused that he didn't catch any fish, but some other kids did catch a few fish, so we did see some in a bucket.
Liam was a bit tired that day, after fishing and a look at a fire truck, he had some hot dog and chips, then went to sleep on a chair, until it was time to go.
Liam did some fishing, he loved it! He was a bit confused that he didn't catch any fish, but some other kids did catch a few fish, so we did see some in a bucket.
Liam was a bit tired that day, after fishing and a look at a fire truck, he had some hot dog and chips, then went to sleep on a chair, until it was time to go.
Monday, September 10, 2012
Relaxed few days
Liam is definitely more tired than he has been. Today, I insisted he walk through the hospital to the clinic (need to keep working those legs), he's been riding in the stroller lately, he was complaining that he was tired, but he did well. He's also wanting to watch more tv than he normally does.
Liam is eating a little "by mouth", but he is not keen on it. Last night he had some alphaghetti and quesidilla, but that's pretty much all for yesterday besides his tube feeds.
The plan is to start the second cycle of consolidation chemo on Tuesday Sept 17 (admit to Unit 1 the Sept 16 in the evening). Liam is pretty much following the "as expected" in terms of recovery, he's following the 28 day cycle.
Same as the previous cycle, Liam will get chemo on Tuesday Sept 17 & Wednesday Sept 18, then the stem cell rescue will be on Monday Sept 24. In this cycle, it took Liam 10 days after the stem cell rescue for his blood cell counts to come back, so we'll see if that is true again this time.
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