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.

Big puzzle & smile

Liam's blood counts are not quite at the lowest yet (likely tomorrow), so he was allowed in the play room today, it is such a great break in the day to get to go to the play room.

Liam is a puzzle master!

Stem Cell Infusion Done

It was a big production of preparation, but Liam's got his stem cells back.

The preservative caused Liam some coughing, but nothing too bad. Liam could have just slept through it, his eyes were drooping, we could tell he was so tired, but he fought the sleep the whole time and hasn't given in yet. There were about 6 nurses in here during the stem cell infusion, he knew something was going on, there's no way he'd give in to sleep.

Also funny, Liam smells like creamed corn from the preservative. It's not an overly bad smell, just there.

Now is just hydration and waiting for Liam's blood counts to come back up.

Prep for Stem Cells

Liam's frozen stem cells are just sitting here frozen in a tank. This is all crazy foreign to me!

They are loading Liam up with medications now, he's pretty dozy from them. They said many kids do get nauseous, they have given him more anti-nausea medicine than he's ever had all at once before. He's  suspicious about what is going on, so he's hugging onto teddy and being very quiet. We thought Liam was sleeping until Troy tried to turn off the volume of the tv and he up and yelled "Dad!".

Try explaining a stem cell rescue to a 4 year old, I can hardly understand it myself. They are giving you stem cells, to make you feel better, but the stem cells might make you feel sick, um, ok

They don't thaw the stem cells until the very last minute. When they give the stem cells to him, it's done through his central line, like a blood transfusion, and only takes a few minutes. It's all the prep and checks that take time.

If you want to read more, this link is to the Mayo website. In Liam's case, the chemo has killed off all his stem cells. Stem Cell Rescue

Good day

Liam is still feeling well, his blood counts are still up.

Liam had a fun visit with his sister, he has been asking for her to visit every day, but today is the first good day for her to come.

They both love to watch the fish. (In the picture M is actually pulling all the tissues out of the box, trouble!)

Tonight is overnight stay #40 in the hospital.

In Recovery from Surgery

Nothing like a last minute Friday afternoon surgery just to make sure we're all completely exhausted.

Liam is back in his room now, having a nap. He woke up from anesthetic quite upset, but generally likes a nap after he gets anesthetic.

I expect this talk of central lines doesn't make sense to most people, just be glad if you never have to know about one. If you want to see some pictures and details, google "Broviac".

Liam got a smaller central line this time, because he's done some of the procedures that required a bigger one. As much as I dislike the central line, it prevents Liam from getting pokes multiple times a week, so it is a necessary evil. The central line is used for IV fluids, blood transfusions, chemo, antibiotics, etc, as well as taking blood for blood tests.

Let's hope we have better luck with this one.

Stem Cell Transplant Delayed

Look Mom, I'm not connected! Liam is so happy, he's no longer connected to his IV, so he has freedom to play and walk more freely.

Unfortunately, he is not connected, because when they were cleaning the dressing, his central line came out further, and is now 8.5 cms out, which means it is no longer usable. This happened when the nurse was cleaning it, when all of a sudden Liam had to pee, so he wouldn't sit still. But, obviously it wasn't staying in place, so it was going to happen sometime. It just should have happened after the stem cell transplant that was supposed to be this afternoon.

They called off the stem cell transplant until Monday. Today, we will figure out what can be done with the central line. They could do the stem cell transplant with a PICC line, but no sense giving him another poke with a PICC line, when he needs the central line anyway.

We are just waiting to find out if he'll be going to the OR this afternoon for a new central line.

Energetic this Morning

Liam is full of energy this morning, he's done puzzles, he's been playing cars on his mat, then trains on the parent "day bed". He's been up and about a lot, he has more energy than I imagined he would today.

The music therapist also stopped by with his instruments, Liam loves that! Liam's favourite is the rain stick, but he did quite a bit of drumming as well. The music therapy is great, I want to try to get Liam and his sister a session together sometime.

Last night we didn't have the 3am bath, so that was a nice break, he only needs to bath every day now.

He hasn't eaten anything at all today though... I'm not sure how he never gets hungry.

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.

More eating!

Might not be much, but we are so happy he is eating food!

Recovery

Liam is recovering so well, his temperature went up a little yesterday, so we were “on alert”, but it went down again. He’s having more quiet time right now, or at least we’re trying to get him to. Yesterday he only slept about a half an hour during the day. Troy and I are way more exhausted than he appears to be, not to mention that he gets up multiple times a night. Last night Liam was on his iPad with Troy reading, I went to see what they were doing and Troy was fast asleep, but not Liam.

Our oncologist had mentioned if we want to discuss the treatment plan and next steps that we can talk to her this week. I called yesterday and got a little lecture from a nurse I don’t know, “well, you should have talked to the dr on Monday, that was clinic day, I can’t guarantee you can talk to her.” Blah, blah, thank you for the lecture. Anyway, the doctor called me within 15 minutes and told us to come in. We spent 1 ½ hour with her and our primary nurse, I am so amazed and thankful that they take this kind of time to spend with us, our team is truly wonderful and supportive.

Liam will get checked out Thursday, if his incision has healed enough, we'll go ahead with the first of three high dose chemo cycles next week.

A big part of our challenge/confusion/concern is that Liam has had so many “blips” along the way, with the first CSF test being positive, but the 3 following were negative. (the first one negative result was before he got chemo so it's even more confusing) Then this lesion which is essentially biopsied, but not fully removed is a bit of an unknown. We can speculate all day long about what these mean, but both of these leave questions that they can’t give answers to. All we can really do is monitor and hope for the best.

Feeding Tube Out - Not on Purpose!

Not sure why, but little Miss M decided to swiftly remove Liam’s NG (feeding) tube! It came straight out, didn’t even make Liam gag or anything.

For a long while now, Liam has hardly eaten anything by mouth. When he tries something, you can tell it doesn’t taste good, the chemo has affected his taste.

We told Liam, if he eats, he doesn’t need to get another tube right away. For dinner he ate more than he's eaten in a long time, a 1/4 hot dog with ketchup, some sips of milk and a few spoonfuls of cheerios.

Our biggest concern is giving Liam's medicine, there is no fighting the medicine through his NG tube.

We'll see how long we can comfortably hold out. Liam's never been keen on eating, and would go long periods without eating before, so eating issues are not new. But, we also want him to continue recovering and also be in good shape for the high dose chemo.

Discharged

Liam was very anxious to go home today! Poor kid did not want to stop for a picture. He is walking so well, he doesn't need the wheelchair, he just still loves to ride in it.

Good News with Confusing News

A mostly uneventful day. Last night Liam had discomfort, likely due to a hematoma (bruised bump) on the back of his head. The hematoma isn't a problem, but uncomfortable and sore. As a result we'll be staying one more night in the hospital in case he has pain again, they won't send Liam home with morphine. Liam was very active today, we played dragons in the play room.

The good news is the pathology is negative for tumour cells.

The confusing news is the MRI still has remaining cells "lighting up" the MRI that Liam had after the surgery.

Our oncologist and neurosurgeon have been going back and forth about what it means all day... it's meant we've had some exhausting conversations.

The conclusion is that we don't know for sure what's showing in the MRI and they can speculate, but we won't know. It will just be something that will require monitoring with MRIs.

Because the pathology is negative, we'll continue the current protocol and start the first cycle of three high dose chemo with stem cell rescue, we don't have the exact start date yet.

Fast Recovery

Liam had a great day today. The day started out quiet, then the neurosurgeon (and team) came to see Liam, they are very impressed with his recovery, and said we could start reducing his pain medications and see how he does. Liam is so funny, he pretends to be asleep when they come in the room.

He got his IVs taken out and the dressing off of his stitches. The stitches are about the same length as the original scar was.

This afternoon, Liam saw the occupational therapist and physical therapist. Before this, Liam hadn't stood up much yet, then in his session, he stood up and played with trains for a half hour! He was weak, but pretty stable, then he walked a way down the hall after without support. The appointment was in the play room, they have good techniques to see if Liam is using both arms or favouring a side, etc. He appeared to be using both sides very well and moving his head back and forth well.

Depending on how tonight goes, we might get discharged tomorrow. Hard to believe a 4 year old can have a craniotomy on Tuesday and go home by Friday.

What next? We don't know yet. Liam needs 10-14 days of healing time, then when we get the pathology, the doctors will figure out what next.

Good day

Good, but busy day, will post update later.

Moved to Unit 3

Liam had a long nap, now he's bright eyed and playing Angry Birds on his iPad.

He woke up and said "I want my sister to come and play, because I love her".

He is holding his head slightly to the side because the surgery was at the back of his head, it hurts if he moves around too much, but otherwise he seems to be feeling pretty good!

Morning in ICU

Liam had a fever last night, his temperature is back to normal now. He also has some swelling on his head, forming a bump, they're just keeping an eye on it. Liam was a bit uncomfortable, so they bumped his morphine a bit up in the night, but he's not on a high amount of morphine. (it seems crazy to me that he doesn't need a huge amount, kids are so resilient)

Liam's face was really swollen yesterday, he had a tough time opening one eye, but the swelling has gone down, he's still very puffy, but his eyes look a lot better. A combination of being face down during surgery and all the fluids through his IV cause a lot puffiness.

Liam woke up this morning and asked to have his new motorbike toy. He is talking to us... when he wants! I was trying to get him to talk to me, he wouldn't until I asked whether he wanted to watch the channel that was on or Treehouse, he was pretty adamant about putting on Treehouse! Then "Mom, I don't like this show!". It would normally bug me hearing him be fussy about tv channel/shows, but it sounds great right now.

The plan for today is to go for an MRI (we aren't booked, we just get called in). Then when Liam recovers from the anesthetic (for the MRI), we will move to Unit 3.

Liam moved to ICU

What a tortuous wait to see Liam, we are with him in the ICU now.

Liam is still sleeping, he's on a few pain medications. We've seen him wiggle his toes and move his head back and forth to get away from the doctor. Seeing him fight the doctor makes us feel good! We asked if he wanted teddy, he grabbed teddy and snuggled him close.

They're going to be constantly checking Liam's motor skills, no one can predict if he will have more or less set back than with the last surgery. Our biggest worry is Posterior Fossa Syndrome, which has a whole range of symptoms.

http://www.ncbi.nlm.nih.gov/m/pubmed/7495523/

Surgery done

The neurosurgeon spoke with us, everything went as well as they hoped with removing the lesion, we just have to wait and see how he is when he wakes up.

They were unable to tell anything about what the tumour is, we'll have to wait for the pathology report in a week.

Update

We haven't heard if Liam is out of surgery yet, but the nurse did come and tell us everything is going well.

Liam is in surgery now

They put him under for an MRI first, and then the surgery will be about three hours.

Surgery Tuesday

We met with Liam’s neurosurgeon who did the full resection of the tumour initially. Discussing surgery brought back difficult feelings of how hard the news was in the first place, and going through the surgery with so many unknowns, everything new to us. I asked the neurosurgeon if I was mistaken that the tumour was 4.5 cm, she replied “at least that”. Hard to believe, she showed us the original MRI again, Grade 4 of 4 Medulloblastoma right there written on the pathology report. 

The new "lesion" (cyst) is in the tumour bed of the original tumour, which was in the cerebellum, at the back of the head.

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

We had our appointment with the neurosurgeon, then we called our oncologist to talk with her again. I’m so thankful that they both were willing to spend so much time with us yesterday to talk to us.

Here we go again. Liam will go into surgery Tuesday morning to remove the 5 mm lesion and get a biopsy to find out what it is. Unfortunately, we’ll have to wait a week before we get the pathology.

I won’t likely post again this weekend as we will be busy having fun!