Thursday, December 27, 2012


Liam is done 8 of 13 days of radiation treatments of phase 1, all without anesthetic. We still are not exactly sure how many more treatments are after that, but it probably is 15 or so more days of treatments for phase 2. We haven't gotten the final details on it yet, it's hard to get in touch with the right people over Christmas, unfortunately, they are very busy.

The iPad is right above Liam's face, Felix the frog is at Liam's feet, Liam is holding teddy and Felix Junior. Before treatment starts, all the stuffies give each other high fives, Liam runs around a bit, then gets up onto the bed. Liam uses the remote to move himself up, then he lays down and they secure the mask over his face and quickly get a show going on the iPad.

In this picture, you can see the laser lights lining Liam up to the dot on the mask. Liam loves the lasers!

Everybody is still so thrilled that Liam is doing the treatments without anesthetic, when we walk down the hall, people I've never met give Liam high fives and tell them he is a star. We are just so happy that they helped us do so! Last week, something was wrong with the imaging so the treatment took extra long, Liam was in the mask for 2 episodes of Curious George (25 mins each). The time varies, but it isn't generally be more than 10 minutes. Having Liam there for that long was definitely a test, and he sat perfectly still the whole time.

Unfortunately, there is a smell of ozone during the treatment and Liam has started saying that it is the "stinky machine", I hope it doesn't both him too much. They suggested the radiation could also give Liam a heightened sense of smell.

Liam had Christmas Day and Boxing day "off" of treatment, but otherwise we are there every weekday at 8:30.

Thursday, December 20, 2012

Pediatric Cancer in the Media

You know how once something affects your life, you seem to see more about it around. That is me with pediatric cancer. Not sure how many people would have caught the Dr Oz show today, they had Marlo Thomas on to discuss St Jude's research hospital, one if the largest pediatric cancer hospitals.

Dr Oz also interviewed a Mom and son, the son had a brain tumour when he was less than 3 years old and he is now doing wonderful. A picture showed the same scar as Liam had, the telltale sign of Medulloblastoma. The mother talked about how St Jude's research gave them the ability to do treatment without doing radiation, due to the impact radiation has on young kids, something we have struggled with immensely. She mentioned the testing that was done at St Jude's that other hospitals didn't do.

I am proud to say that our oncology team is very up to date with the latest research and did this testing as well, Liam had his disease tested for the subtype. Unfortunately for us, Liam's subtype was not the one that had a fairly high success rate with chemotherapy only. Which is why Liam is undergoing radiation therapy at the moment, to give him the best chance of survival.

The other story in the news is a woman in the UK, whose son has Medulloblatoma brain tumour. He had the tumour resected and then she took her son and went into hiding to avoid having to give him radiation. By waiting to treat him, this aggressive disease has already recurred, so he needs another surgery. This has actually now gone to courts and the court has ordered that he gets the surgery. The decisions we have to go through for treatment are horrible for a parent to have to make.

Monday, December 17, 2012

Second Treatment Done

Liam did his radiation without anesthetic again! Today was thanks to "Curious George".

This week we go for treatments every morning, it will be the only week that we go every day because of Christmas and New Years falling on weekdays. Troy is at home, so we will take turns taking Liam in. We don't have to wake Liam up to make the 8:30 appointment, since he already gets up around 6:30 or so, but his sister sleeps longer, so it is much easier not to bring her along too. Although Liam really wants to show his sister the laser lights in the radiation room, he asks all the time if she can go too.

Saturday, December 15, 2012

Friday, December 14, 2012

First Day of Radiation Done

Troy took Liam to the Tom Baker Cancer Centre for the 9:00am appointment, and I dropped off Madison at a friend's so we could both be there. Liam got going so quickly that I arrived when they were finishing! It's great to get going quickly, and there was nothing I can do during the appointment, so I didn't miss anything.

I was a little nervous because Liam had to have no foods or liquid just in case he required anesthesia, and he really wanted a banana before he left home. I wasn't sure if this would be the factor that would determine how the appointment went, but he forgot about the banana, and it didn't turn out to be a problem. I'm not sure why, but Liam always runs a few laps around the room where he gets the treatments, I suppose it's good to get some "energy out". Liam got going with no problem, he watched "Max & Ruby" on the iPad while he was on the table, with the mask on.

To find out if Liam moved at all, they took a scan before and after the treatment and Liam was in the exact same position, thank you "Max & Ruby". The therapist went into the room and tried to distract Liam, but he didn't even flinch when she waved at him, he is taking his job seriously.

After he was done, Liam got to put the first sticker on his progress chart that they made him (Cars themed). The radiation team was so thrilled that Liam did it without anesthetic, we were talking about it after, and Liam just sat eating his banana, unfazed by it all.

We haven't spoken to the doctor this week, but the plan is for 13 treatments instead of 30, so this is also good news, as this would mean we finish on January 4. (We knew 30 didn't make sense... but they didn't want to confirm the number until the plan was completed) Still not exactly what we wanted to do during the Christmas holidays, but if Liam can do it without anesthetic, we can still plan on doing fun things.

If Liam does decide part way through that he won't sit still, there will be an anesthesiologist at Tom Baker every day, because there is another wonderful little boy we know, too young to go without anesthetic, getting radiation just before Liam. Liam still has his broviac line, so it makes anesthetic quick and easy, if it is necessary.

The biggest challenge of radiation is going to be putting lotion on Liam's head. We need to put lotion on the back of his head several times a day to prevent soreness, which will occur over time. (Some people get to be like they're sunburned). Liam freaks out when we even mention putting lotion on him, not meaning on anything that is sore, he freaks out when we try to put lotion anywhere. And not medicated lotion, just regular lotion, on any part of Liam's body, he freaks out and frantically tries to rub it off with a towel. When Liam was in recovery after a previous anesthetic, Troy put lotion on Liam (because it's a dry time of year in Calgary) and Liam's heart rate went up! All Liam has gone through, and he believes lotion and baths are the worst things, hmm, two my favourite things!

Wednesday, December 12, 2012

Radiation Starts Friday

It might sound crazy how often they've changed our dates... unfortunately, the doctor is just very busy. Making the radiation plan is very important, so we don't want him to rush Liam's plan.

He worked hard to get the plan done, so we'll be starting Friday morning.

Be Child Cancer Aware

From today's Be Child Cancer Aware Facebook Post, a UK organization working on raising awareness of childhood cancers.


Brain tumours are the most common solid tumours that occur in children. Children of any age may be affected. About 450 children in the UK develop brain tumours each year. Boys are affected slightly more often than girls.

Brain Tumours are now sadly the leading cause of death in childhood cancer.

The two main types of brain tumours that affect children are gliomas and medulloblasto

Gliomas develop from the supporting cells of the brain (which hold the nerve cells in place). They can be subdivided into two main types in children: astrocytomas and ependymomas.
Medulloblastomas usually develop in the cerebellum. They may spread to other parts of the brain or into the spinal cord.
Symptoms of a brain tumor might include

* Headache
* Vomiting and nausea
* Personality changes
* Depression
* Trouble controlling muscles
* Seizures
* Vision or speech problems
* Drowsiness or moments of unconsciousness

If hydrocephalus occurs in a young baby, the soft spot on the top of their head may bulge and their head may increase in size.

Treatment for children is sometimes different than for an adult. Long-term side effects are an important issue. The options also depend on the type of tumor and where it is. Removal of the tumor is often possible. If not, radiation, chemotherapy or both may be used.

Be Child Cancer Aware

Tuesday, December 11, 2012

More Practice for Radiation

Our day started out with Liam having non stop temper tantrums and crying at a drop of a dime. It was a tough morning to say the least, it must be so tiring for Liam having the tantrums. I figured he would be exhausted for the afternoon, we had arrangements to go for another "radiation practice". I didn't think it would go well, but Liam came through and did a great job.

Liam got another chance to play with the bed and machine controls. Then Liam put Felix the frog on for a trial run, you can see where the mask gets fastened to the table.

Then it was Liam's turn to get up on the bed and put the mask on.

This time the therapist fastened the mask to the bed and I left the room (she didn't actually fasten it last time). I watched from the control room where they have monitors, she moved the bed and machine around to see if Liam would be okay. Then the therapist left the room while he was fasted to see how he would react. (No one can be in the room with Liam during radiation) Liam just watched Cars on the iPad without moving. The white spots on the mask where Liam's eyes are will get cut out, but initially they need the full mask, Liam was okay with watching the movie through the mesh.

Liam sat with the mask clamped on longer than an actual treatment today. There is setup, etc, but the time of treatment with the mask on will be around 10 minutes.

Things are looking positive to do the radiation without anesthetic, so we will give it a try.

The start of radiation has been delayed again (the doctor is very busy), it looks like we should start Monday. It's hard to be disappointed, but also frustrating because we just want to get it over with. Radiation is key in preventing recurrence of this evil disease, so that's always going to be at the back of our minds.

Monday, December 10, 2012

Liam Update

Things almost feel "normal" for now, while we are waiting to start radiation. As normal as possible anyway. Liam has great amount of energy, he plays all day long. He has some tired days, but he rarely naps, and hardly falls asleep in the car on the way home from preschool now. We've still been to the hospital a couple of times a week, but also making it to preschool twice a week.

Eating is still a challenge. Liam has tried some new foods, he now loves fries and McDonald's chicken nuggets, which he never ate before. He eats gingerbread cookies and girl guide cookies every day, drinks milk, and the odd banana. Because Liam is eating some, we aren't giving him full NG feeds, but we're still doing about 3 feeds a day to make sure he gets enough calories. Not to mention cookies and fries aren't exactly a full range of nutrition. The main thing we are focusing on is just keeping him eating some food, no matter what it is, just to keep everything working. Chemo just is plain cruel to the taste buds, not to mention that Liam has vomited so much, he has an association with eating and vomiting. We won't be aggressive with taking the NG tube away until Liam is done with radiation, we hope radiation won't cause him nausea, but there is a chance. As soon as Liam is nauseous, he won't eat.

Liam has beautiful eyelashes coming in! They are only a few millimeters long, but they are thick and coming in fast. Liam has some fuzzy short hair all over his head as well, but it doesn't look to come in as fast as his eyelashes. It's still hard to tell what colour his hair will be (sometimes it comes in different than before), it looks like it is light, it's hard to see it.

I've been trying to get a Christmas card together, so I've been going over the pictures of the last 225 days since Liam's diagnosis on April 30, it is almost too hard for me to go through them and be reminded of all Liam has gone through.

In the picture, Liam has his stethoscope around his neck, Liam does a perfect physical exam like the oncology doctors do. He will do physical exams on us and Madison and even tell us in a soothing voice that we are doing a good job. When the exam is done, he puts the stethoscope around his neck, just like the doctors do, it's very cute.


I've posted before about Liam working on his beaded journey.  Liam's Beads

Liam loves working on his bead rope, and it is great work for his fine motor skills as well. Some people asked if they could get something for Liam for Christmas... if you would like to send Liam some beads for his rope, that would be something special for him.
I got this idea from 2 sweet boys who gave Liam some beads after they saw the blog posting about Liam's beaded journey, very thoughtful.

I don't want to post our address here, but if you send me an email or Facebook message, I will send you our mailing address. 

Thursday, December 6, 2012


Liam had the radiation simulation done on Monday, and the face mask made. I mentioned before that kids Liam's age generally get anesthetic every day for their radiation. But, Liam has done a couple of MRIs and CT scans without anesthetic, so the radiation team is willing to help us try to do radiation without the anesthetic. It's not like we are committing to no anesthetic, if he starts getting upset or anything, we just arrange for the anesthesiologist for the next day and forward.

The radiation team suggested that we get Liam used to the room with the machine (we have a wonderful radiation therapist). Troy took Liam to the Tom Baker, and Liam got the opportunity to play around in the room with the machine. Liam played with the bed controls (moved it up and down, etc). Liam even laid down on the bed and put the mask on! There is an iPad mounted on the machine, which Liam can see through his mask, so he sat and watched Cars.

I don't know how well I would handle laying there with a mask holding my head to the bed! But, I try my hardest not to show my feelings and we are trying to make it all seem fun. They even have a giant frog Felix that they use to demo putting the mask on, and they gave Liam a small frog to match him.

If Liam can do it, it would be great not to have anesthetic. The actual radiation only takes 15 minutes. If Liam gets anesthetic plus radiation it would take around 1 1/2 hour. On Monday, when he had anesthetic, he was still unable to walk without falling until about noon, so that would be tough every day.

We have no expectations, he is 4 years old and this is a lot. But, it is worth a try. It is looking like radiation will start on Wednesday, daily for about 6 weeks.

A team at Tom Baker got the iPads working just this summer! iPad for Kids

 Felix is up on the bed of the machine and Liam is moving the bed around.
Liam was quite impressed with all the lasers.

 Felix watching Cars.

Look at this kid giving Dad a thumbs up!

A volunteer paints the masks for the kids, it's the little things that help.

Friday, November 30, 2012

Radiation Planning Next Week

After the neuro assessment on Tuesday, we managed to stay away from the Children's Hospital for the rest of the week (so far). The kids enjoyed preschool for a few days. We are not going out much because it seems like everyone has a cold or flu right now. Liam is not neutropenic (when he has no immunity), but he is still immune compromised, so it's just easier on our lives if he doesn't get sick.

We still don't know exactly when Liam starts radiation. On Monday morning, Liam goes to get the Tom Baker Cancer Centre to get the simulation done and mask created. It's great that they get us in early at 8:30am because this requires anesthetic, therefore Liam can't have food or water before. After this is done, the radiology team needs time to finish up their planning, then we will get started. A pediatric anesthesiologist comes to Tom Baker for the kids that are getting treatment.

The Mayo clinic has a bit of an overview of what Liam will go through Radiation Planning.

Tuesday, November 27, 2012

Hospital trip

For the six months of Liam's chemo treatment, we almost never brought Miss M to the hospital with us because we always had someone at home to look after her. I am so thankful for not having to bring her along, it would have been very challenging for some of the clinic visits. She would really only come for a visit to the unit when Liam had a longer stay.

Now that Miss M is a bit older and clinic visits are generally quicker, she's been having a lot of fun coming with us for appointments, and it's actually fun for all of us. She goes to Emily's Backyard babysitting for part of the time, and she will play with Liam in the clinic for part of the time.

The psych-neuro-whatever it's called assessment that Liam had today went very quickly. Though, I am actually not sure if that's because Liam did really well or he wouldn't cooperate, haha. The psychologist didn't want to tell me in front of Liam. But, nonetheless, they spoke to child life specialist ahead of time, she let them know that Liam loves Cars and puzzles, so as a reward Liam got a huge floor Cars puzzle!

The picture is of the kids in the cafeteria, they were angels today. I am one lucky mom.

Neurocognitive Assessment

Today Liam goes for a neurocognitive assessment, this is something done before radiation to the brain. They will hopefully get a baseline on Liam, he will need assessments before school during school. I say they "hopefully" will get a baseline, because these days Liam tends to not be open to new people, he's just had to interact with so many people, he doesn't know who is going to poke and prod him or who is going to play games. The assessment is done by playing games, so hopefully the stars align and Liam has some fun too.

We have a little more information on the radiation. Our team has recommended doing radiation to the tumour bed (the tumour was in the posterior fossa at the back of his head), recurrences tend to happen at the original tumour site. This option will hopefully be less of an impact to Liam in terms of the late effects of radiation. Hopefully they will contact us today to give us the details of the plan, they did mention it will be daily radiation treatments for 6 weeks.

Sunday, November 25, 2012


It seems it would be too simple to have a relaxing, uneventful weekend... Not that Troy and I can ever really get our minds off things, but we try.

Saturday, Liam started crying because he was having pain when he was urinating, poor kid. We called the oncologist, he asked us to bring Liam in, so Troy took him to unit 1 at the hospital. Liam peed in a cup and they started antibiotics for a urinary tract infection. We are so thankful that they managed to get in and out very fast as this was around 8pm.

I must say though we are very fortunate that they don't make us go sit in a walk in clinic on a Saturday night, like we would normally have to do. We barely go into public as it is right now, let alone a public waiting area at a doctors office.

The frustrating part of the antibiotics is always the diarrhea that usually follows. Liam had close to 3 months of diarrhea, which of course results other problems. He's been better for almost 3 weeks, here's hoping he can avoid more diarrhea. 

Today we have on our Stamps shirts, Liam said he would like to have the Grey Cup, he wants to know where it is. Maybe we'll keep the tv turned on to the game long enough so he can see the cup.

He is loving Christmas music and are trying to get organized to put up the Christmas tree, hopefully this can turn out to be an uneventful day.

Friday, November 23, 2012

Still Waiting

A week has gone by and unfortunately we still don't have a plan for what the radiation will be. We need to speak with the radiologist and we can't get in to speak with him. This is very frustrating as our oncologist wants to get going.

The positive - the kids play and play and they have no worries besides what toys they want to play with next. The negative - I sit by the phone/email waiting for the radiologist, trying to coordinate all the other appointments while kids scream in the background (because kids always know when a mama is on the phone), feeling sick to my stomach not knowing what we are doing next.

From the stories I read online of other families with kids with Medullobastoma, I better get used to the waiting and unknown. With MRIs every 3 months, and the chance of relapse the highest in the next 2 years, I guess we'll be in a state of waiting and worrying for a long time. Good times.

Wednesday, November 21, 2012

You're Beautiful

Liam watches this almost daily, he loves to see kids that are "connected" to IV poles, with tubes and no hair.

Sunday, November 18, 2012

Effects of Treatment

The effects of chemotherapy and radiation are awful, it is so hard to know this is what we're doing to our child, but without these treatments, his chances of survival are low. Liam's treatment path was chosen to delay radiation as long as we can, and to allow his brain to develop further.

I found a good summary of the side effects of Liam's treatment. The following is from the American Brain Tumor Association, Medulloblastoma:
Side Effects

In the short-term, fatigue, lack of
appetite, nausea, sore throat, difficulty swallowing,
and hair loss in the path of the radiation beams are
the most common acute effects of this treatment.

Children appear to experience greater intensity of
the long-term effects. Radiation may trigger a
decrease in IQ or intellectual ability, accompanied
by learning disabilities, attention deficit and
memory loss. Most of this research has focused on
children: The younger the child during treatment,
the greater the potential subsequent learning
challenges. Infants and children less than 3 years
of age are particularly vulnerable because the brain
is maturing rapidly during this time.

Radiation can also have long-term effects on the
hypothalamus and pituitary, two glands that
contribute important hormones for bodily
function and growth. Since these glands are
directly in the pathway of the radiation beam,
their normal function may be disturbed by the
treatment. As a consequence, patients can have
problems with obesity and hypothyroidism
(thyroid deficiencies). They also may experience
short stature and scoliosis (curvature of the spine)
if the spinal cord is irradiated. Patients should be
evaluated carefully for hypothalamic or pituitary
dysfunction and receive replacement therapy.
Studies have not shown that children treated with
growth hormone replacement are at a higher risk
for tumor recurrence.

Hearing loss may accompany the use of the drug
cisplatin in children. Because this drug has an
important role in treating childhood
medulloblastoma, scientists are testing “protective”
drugs that may be able to defend a child’s hearing
mechanisms from cisplatin. This research is
ongoing. Hearing may also be affected if radiation
beams pass near the ears; an otolaryngologist
(an ear, nose and throat doctor) can be of help in
diagnosing and treating this effect.

The short-term effects of chemotherapy are
similar to those of radiation: Hair loss, nausea,
vomiting, fatigue and weakness. But
chemotherapy can also lead to reduced blood
counts and kidney problems. As patients live
longer, there’s the added risk of secondary
malignancies, such as leukemia.

Liam has some high pitch hearing loss from the chemotherapy drug, cisplatin, but his hearing is still in the normal range. Liam's kidney tests have varied, one test result showed his functioning was at 75%, but another test showed that his kidneys were fully functioning. Liam has another kidney function test coming up.

Liam was going to OT/PT (occupational/physical therapy) every month, but hasn't been the last 3 months because we were in the hospital for so long, we will start this again soon. Liam has come a long way, but still needs work with his fine motor skills, he is able to write lines and simple things, but has work to do before he starts printing letters. We have pre-pencil exercises that we work on, he's really not interested in working on his pencil skills, he doesn't enjoy colouring for long. It's great that Liam loves doing Lego, this is a great exercise for his fine motor skills.

MRI Results

Liam's oncologist is good about getting to us with results as quick as she can, she took a look at the MRI and gave us a call on Friday afternoon.

The good news that Liam's MRI was the same as the last one. The mystery spot that Liam had surgery on in August is stable, staying the same size. It would have been much better had it completely gone away, but at least there is nothing new.

From the lumbar puncture, the preliminary results show the CSF is clear of disease, but more testing will be done at the lab.

We still don't know what this means for further treatment, but the good news is there is nothing that requires urgent attention. We do hope that the next steps can be defined soon.

Starlight Holiday Party

Saturday we went to a holiday party held by the Starlight foundation, there was food, crafts, sleigh rides and Santa! The highlight for Liam was to get to chat to Santa about what he'd like for Christmas. Unfortunately, Liam wasn't feeling great, but was a trooper and posed for a picture with the family and Santa. He also did a great job decorating a ginger bread cookie.

Thank you Starlight Children's Foundation for the great day out.

Thank you Emily Exon for the pictures.

Thursday, November 15, 2012

Quiet afternoon

Liam had sedation for his MRI and lumbar puncture this morning, so he is a bit groggy now. His back hurts from the lumbar puncture when he stands up, but refuses to take Tylenol. Liam takes a few other medications, not sure why he won't take the Tylenol.

Liam's tube is still out, although he has lost a little weight, so I'm not sure how long we can wait for him to start eating more. We are spending all day long trying to get food into him, there is just nothing that he loves.

We still don't know what is next, it depends on the results of the MRI/lumbar puncture. We will find out the results hopefully sometime next week, then we'll have another discussion with our doctor. We are trying to enjoy some normality, but it is so difficult not knowing what we're doing next and just waiting.

Liam went to preschool 2 days this week, he loves it.

Monday, November 12, 2012

Counting Calories

It feels like we are spending every moment trying to get Liam to eat. I do not get how he doesn't seem to get hungry. Yesterday, with all his nibbles, I think he *may* have gotten 600 calories.

Liam actually tried french fries yesterday, he would never even touch them before. He only ate 4 though. At this point, we're pretty much offering him anything/everything, but he won't each much of any one thing.

With Liam's tube feeds, he'd get between 1000-1400 calories, so he's got a way to go to get enough calories!

Saturday, November 10, 2012

Loose Moose Theatre's Rumplestiltskin

We were invited to see Rumplestiltskin with Jamie's Preschool, both kids absolutely loved it. It was a cold morning, but we bundled up and made it to the show.

After the show, both kids were anxious to get their programs signed by the actors. Thank you Loose Moose Theatre and Jamie's Preschool!

After the show we had lunch at Crossroads Market, and what is a market without balloon animals. All Liam ever wants is a bike or motorbike creation, M got an Elmo. Unfortunately, by this time the kids were in no shape for pictures!

Feeding tube out

Liam's feeding tube is out... but not on purpose, he got sick last night and it came out. (Liam hasn't been sick much, but nausea still affects him sometimes)

Liam has started nibbling on crackers and drinking milk, but that's all so far. He really hates getting the tube put in, will he eat enough to avoid getting another one? We will give it a try, I'm just not sure if we are still too soon after chemo to have success with getting enough food into him.

Thursday, November 8, 2012


Liam was finally able to go to preschool today! We are so lucky there is a preschool for children with compromised immune systems, Jamie's Preschool. They are very flexible, they understand that things can be up in the air as to when Liam is able to go or not, and they realize how much these kids need to be able to play and learn. Little sister is also welcome, which is also important as she really hasn't even seen other children in 6 months, and we keep her away from play areas in malls, etc due to germs and the need to protect Liam. They were both so excited and had a great time.

The downside is we got home and Liam basically had a tantrum for 3 hours, he was just so exhausted and was too worked up to sleep. Things are not easy after the last 6 months.

Wednesday, November 7, 2012

Done BMT

Liam is in the chair of the outpatient clinic where they do Liam's bloodwork (getting bloodwork from his central line is uneventful, Liam doesn't say that he feels anything), in the picture, he was shaking the vials of his blood that they send to get his CBC, etc.

For the 3 cycles (3 months) of high dose chemo with stem cell rescues/transplants, Liam has been under the care of BMT (Bone Marrow Transplant). He saw his BMT doctor on Tuesday, and Liam was given the "all clear" from their perspective. Liam's care will now handed back to his oncology doctor. I'm not sure what the trigger was, but by the end of the appointment, Liam was dancing around the room, the doctor, resident and nurse all had a laugh and felt pretty good about how he's doing.

Liam is feeling very good, he is pretty much playing all day long. I am curious as to when his hair, eyelashes and eyebrows will start growing back, everything did start growing back in between the induction chemo and the high dose chemo, but fell out again with high dose chemo.

Liam hasn't started eating much yet, some milk and Smarties. Hopefully this will come back soon.

Liam's weight & height:
May 23, 2012 15.2 kg/33.5 lbs, 99.3 cm/39 in
Oct 26, 2012 15.2 kg/33.5 lbs, 101.6 cm/40 in

Monday, November 5, 2012

Flu Vaccine Excitement, wha?

For the last 6 months, all things medical have been about Liam, he's been through so much. We were discussing when we'd go get flu shots, Liam wasn't going to get one, so I suggested we'd let Liam stay home with Grandma instead of going to the flu shot clinic. Well, no! Liam was very enthusiastic to see other people going to get "pokes"!

Liam watched as M and I got our flu vaccinations, he was pretty excited. When I was getting mine, he told me to wiggle my toes and made funny faces while we got our "pokes". He has the the distraction technique mastered, he's seen it enough.

It was funny to see him so enthusiastic about us getting shots. I can only imagine how it was nice to have it be someone else.

Friday, November 2, 2012


We went to clinic this morning to get Liam's blood counts checked. Everything is going up as expected, gotta love that, no transfusions needed.

Liam has been on g-csf since Day 0 (stem cell transplant day) to boost his blood cell production. Because his counts are good today, he no longer has to get daily g-csf. This is good because when we are at home, the g-csf is given by needle in the arm, in the hospital they give the g-csf through IV.

We had an extra long wait at the clinic this morning, but as usual, Liam had fun playing with the toys there, he didn't mind the wait.

See updated counts here.

Thursday, November 1, 2012

Discharged Yesterday

I didn't get to post my routine discharge picture and blog posting yesterday because a) Liam was WAY too grumpy to take a picture, so we didn't even get a picture on the way out of the hospital b) We had 2 cars at the hospital, so I couldn't post to the blog while driving

Then we got home, brought the bags in, ate, then we went out to a few houses trick or treating. It was very cold out, but the kids still wanted to go. Liam even ate a few Smarties when we got home, he has never liked Halloween candy, go figure.

And now the home chaos begins. It is much harder to post to the blog when I'm at home. Not to mention I have 2 children both who think they are the "only child" these days. Liam requires many medications and NG feeds through the day. The other child thinks she's an only child because she essentially has been home by herself with the Grandparents for 6 months.

If Liam is feeling better next week, we might be able to attend Jamie's Preschool, the few times we went last school year, Liam loved it. And siblings are welcome as well, I think his sister might like it even more than Liam, as she hasn't really seen any other kids much the last while.

Wednesday, October 31, 2012

Day +9 Going Home Today!

We got word that we can be discharged this afternoon!

Day +9 Counts Are on the Rise

Good news, Liam's white blood cell count is 1.3 and ANC is 700.

I haven't spoken to anyone about discharge yet, I don't know if this means we'll get discharged today, because of the fever and antibiotics. It will depend on which doctor is on today (some doctors are much more stingy about letting us go, even though we live 15 minutes from the hospital), but it also depends on what we can do about the antibiotics. On discharge day, it generally takes the whole day to get everything done to get out the door, which works to let Liam take part in Bingo and Halloween events.

See updated counts here.

Tuesday, October 30, 2012

What Next

We've gotten a lot of questions about what is next for Liam. To be honest, it's hard for us to think of what is next, we are so focused on getting through this cycle. The current cycle is 28 days, so Liam will need to go to clinic and get his blood counts done, at least a couple of times after we're discharged. Then we have our follow up with the neurosurgeon, hearing test, kidney test plus some others I can't remember at the moment.

At the end of the cycle, Liam will get an MRI and lumbar puncture to make sure there are no signs of disease (if that mystery spot that Liam had surgery on in August would be completely gone, that would be a big bonus and big relief). Based on these results they will recommend a course of radiation. We haven't met with the radiologist yet to find out how much radiation, how long of a course it would be or when it would start. I assume Liam has to also get his blood counts back to a certain level after chemo (after 28 days, the counts are still not "normal"), but how quick we start will also be determined from the MRI and lumbar puncture results.

Day +8 Counts Still Down

Liam's counts are still down, tomorrow is the day that we hope they'll be coming up.

As I mentioned, the daily baths and dressing changes are no longer required because we are far enough out of the chemo that required it. Last night, Liam said to Troy "Mommy didn't give me a bath today!" haha, keeps me honest!

Liam really knows how to take over the hospital room, I had no where to sit! :-) It takes some encouraging to get him to get out of bed, so I am just glad when I can get him out of bed to get him moving around.

Liam got a transfusion of platelets again today. His platelets were lower when we started chemo, so I'm not too surprised that he's needed them a couple of times. He also got IVIG (intravenous immune globulin), which required Liam to be "connected" to the IV for a couple of hours, with frequent blood pressure checks. This was a challenge because his sister and Grandma came to the hospital again and Liam really wanted to run around. We had a pizza party tonight, as it's Grandma's last night in Calgary, even though Liam won't eat pizza, he was pretty excited.

Fingers crossed for blood counts (ANC >=500) in the morning... although, not sure when we will be able to be discharged quite yet due to the fever and antibiotics, we'll see what they say tomorrow. It will be a big day though, it's bingo day and there is lots of fun planned for Halloween.

See updated counts here.

Monday, October 29, 2012

Day +7 Fever

Liam's fever continued today, he was up and down through the day and still is having times when he is nauseous.

Liam no longer has daily baths and dressing changes, so that is nice to have that over with.

It was a pretty quiet day, although Liam did get a bit of a play with Grandma and his sister this afternoon, this helped get Liam up and playing out of bed for a while.

This morning, Liam dressed up as Buzz, watched "Toy Story 2" and played with his Toy Story characters. Then later on he got out of his Buzz costume and watched "How to Train Your Dragon". This afternoon, Liam and M drove cars together, driving down the "hill" footstool. Child life provided us a mat for the floor, so it is a good place for them to play together.

Sunday, October 28, 2012


So disappointing, we are so close to Liam's counts coming up. Since Liam is neutropenic, he has no ability to fight infection, they start him on antibiotics immediately. They do blood cultures and try to find a specific cause for the fever, only one time has anything come up on the cultures.

Until the cultures come back, and his fever is down, we will not be going home.

Let's just hope this fever is not as persistent as the last.

Day +6 Day Pass & Beaded Journey

Liam's counts are still down (as expected), he's still neutropenic. See updated Counts.

Liam had a day pass today, another fun few hours at home.

At the hospital, we caught up on Liam's beads, he loves adding new beads, it is getting very long! It's not all procedures and chemo though, every time we do something fun we have special beads that we put on.

Liam's feeling pretty well today, so far, no getting sick today!

Saturday, October 27, 2012

Day +5

Liam's hemoglobins were low, he had a transfusion of red blood cells today.

He hasn't been as sick as yesterday, but still not feeling great in terms of the nausea. When he's feeling nauseous, it's hard to get him to have all his NG feeds. As per usual due to the chemo he's back to not eating or drinking anything by mouth again.

Liam had a short "day pass" to go home late this afternoon, it was later because it takes a while to do the red blood cell transfusion. Despite not feeling well, he still ran in circles with his sister at home.

Friday, October 26, 2012

Day +4

We did go home for a few hours this afternoon. Unfortunately Liam started vomiting this afternoon, he's gotten sick about 3 times today. He bounces right back though, gets cleaned up and back to playing!

Liam and his sister pushed the teddies around Liam's hospital room in this doll hospital bed, it was pretty funny to watch, poor teddies had a rough ride!

Child Life

I cannot say enough good things about the child life specialists for unit 1. This morning was parent coffee, while I had coffee in the Sunshine room, they came and kept Liam busy by putting an NG tube "in" teddy!

Liam's ANC is now down to 0, so the doctor we saw this morning (not our dr) didn't want us to go on a day pass today. Liam was very upset about it... then something happened (she spoke to our dr maybe) and they just told us we can go!

Thursday, October 25, 2012

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.

Day +3 Day Pass

Yay for a day pass today!

Liam is still feeling really good, he hasn't even had any vomiting in the last couple of days. He gets regular Granisitron and when he feels nauseous, we give Liam Gravol right away, which is a couple of times a day. Liam is not near as sick as he was at this time the previous 2 cycles. On day +3 both times, Liam was vomiting 2-3 times a day. I am really jinxing things here aren't I.....

We did Liam's regular bath and dressing change this morning, then we were able to leave just before noon and come back for IV g-csf at 4:00.

It's very nice to get home, Liam may play with the same cars and trains, but it is such a welcome change of scenery. Except that he forgot his new Lego Jessie and Bullseye at home, ugh.

As I'm typing this, completely out of the blue, Liam said "Mommy, next year I don't want you to forget the bouncy castle on my birthday"! I don't even think we talked about a bouncy castle for his 4th birthday, but with the central line and NG tube, it just was too stressful. He had one when he turned 3 though, I guess it was memorable. I cannot wait to get him the best bouncy castle possible next year!

Wednesday, October 24, 2012

Day +2

Another big day, Liam's still feeling really well. Grandma and little sister M came for a visit, her and Liam played pirates together.

Liam's current room is right across from the beautiful fish tank, he got to watch the fish being fed and the fish tank getting cleaned right from his bed. He was concerned Nemo wasn't getting enough food though.

Then, it is Wednesday, BINGO day, a big day on Unit 1. The bingo prize cart is unbelievable, Liam was very excited by his win of a Lego Toy Story set. When that cart comes around, it is no easy task for a 4 year old to pick something.

Liam's blood counts are still on the way down, Liam's white blood cells and ANC will go to 0 before they go back up again.

Liam Day +1 Liam Day +2 Normal Range When take action
White Blood Cells 23.5 16.6 4.0-14.0 n/a
Hemoglobin 94 95 110-157 <80
Platelets 65 42 150-400 <10-20
ANC 22900 16200

View Blood Cell Counts here.

Tuesday, October 23, 2012

Day +1

Not too much going on today. Liam's feeling well today, although when we're in the hospital he only wants to play in bed these days, but today he was up playing pirates on the day bed, or should I say "the ocean". When the pirate ship goes out to sea, the day bed is the ocean, I'm sure this is obvious :-)

We may have been able to get a day pass, but after the huge snowfall, I thought we might as well stay indoors until the chaos of the first big snow was over and the streets were plowed.

Things are quieter when Liam isn't getting IV antibiotics every couple of hours as was the case the last 2 cycles. Not to mention the tests and visits from Infectious Disease last cycle due to the persistent fever, without all that things are very quiet for us. If we can just stay fever free this time, that would make things go so much easier!

We have a bunch of little friends who play outside our room window.

Monday, October 22, 2012

Stem Cell Infusion Done

Pretty uneventful, Liam coughed and got a little sick, but the infusion was done quickly. Now Liam and his room smells of creamed corn, and Liam will smell like that for about a week! (from the preservative)

Liam is tired and resting now.

Today is "day 0" so now we just wait for Liam's blood cell counts to go up to get discharged, hopefully day +9 or +10.

Day 0 - Stem Cell Infusion Day

Just another morning of crafts and pirate ships.

Liam is still feeling really well this morning. I have been told that the effects are cumulative, so I was quite worried about this cycle, so far it has been easier than the last cycle when Liam had the fever that went on and on. Though Liam's blood counts have not gone down and the vomiting hasn't started - yet. They both will hit soon.

The stem cell infusion is this afternoon. The stem cell infusion is quite the ordeal, because they have to bring Liam's frozen stem cells from the "bank", it will be the same as the other 2 cycles. The issue we faced with the previous 2 cycles is Liam coughs and gets sick, a side effect of the preservative used to freeze the stem cells. 

During the infusion we have a room full of people. The person who brings the stem cells and thaws them, 1 nurse who does the infusion, 1 nurse who tracks everything that happens and usually a nurse watching/training. They give Liam Benadryl, Gravol, Grinisitron (anti-nausea), Ativan plus Liam's regular steroids, etc. But because of all the people in the room, Liam doesn't sleep, he forces himself to keep his eyes open. Maybe this being the third time, he can relax, ha.

Saturday, October 20, 2012

Last Day of Chemo

It's hard to believe, round 6 of chemo is done. Although it is the last day of chemo, the cycle has just started, so we're not celebrating yet, the stem cell rescue is on Monday. So far Liam hasn't had any nausea, previously it has started a few days after chemo.

What we are celebrating is that Liam ate a bowl of cereal, a whole cheese quesadilla, a chocolate quinoa cupcake and chocolate milk, all before 3pm! (You may notice chocolate remnants on his face in the picture)

The baths are going pretty well compared to last cycle. After every bath, we also have to do a central line dressing change, and unfortunately these are going horribly. It is critical that Liam lays down still while his central line gets cleaned, but he's been kicking, flailing and crying. Of course we cannot blame him, it is so hard by this point, not to mention he is tired from being woken up in the night to have a bath. We bought some new bribery toys from the dollar store, not sure if this will help or he'll just be mad that the toys aren't cars or trains!

Friday, October 19, 2012

Visit from a Stampeder Today!

Will DeSouza stopped by for a visit and signed a ball for Liam. Liam asked where he is from, he's Canadian but born in Brazil! He asked and if a girl Stampeder could visit instead, lol, I don't know if he means a cheerleader or what, he said he saw girl Stampeders before. Liam also asked if Will rides a horse.

For the non Canadians, the Stampeders is the Calgary CFL (grid iron) team. And for the Saskatchewanians, Liam still prefers his Gainer shirt!

Chemo Consolidation #3 of 3 Started

For whatever reason, chemo never seems to start on time. It doesn't really matter too much normally, except that the stem cell rescue on Monday does depend on the chemo starting on time, the stem cell rescue is done 48 hours after the chemo has ended. They were only 1 hour late this morning, chemo started at 11:00 am.

We will start the 6 hour baths today. Child Life already loaded us up with new bath toys! And my sisters also sent some fun stuff for the bath, so hopefully the baths don't have to be as painful this time. But hey, I am able to bath Liam while he is stomping and flailing around in the tub. Not exactly safe, but that's how it was a few times last time.

Lego Theme Today...

We have a Lego safari!

We were in the mall the other day and couldn't make it by the Lego store. Liam picked out this set and we decided to wait until we were at the hospital to open it. He was so patient to wait a few days before playing it, he was actually counting down the days until we came to the hospital! He asked many times if the Lego set was packed... he wasn't going to let us forget it.

Thursday, October 18, 2012

Go Ahead for Consolidation #3 of 3

Liam had a physical exam with the BMT (bone marrow transplant) doctor today, and they checked his blood counts. Everything looks good, so Liam will be admitted to Unit 1 tonight.

Friday Oct 19 - high dose chemo
Saturday Oct 20 - high dose chemo
Sunday Oct 21 - "rest day"
Monday Oct 22 - stem cell rescue

Then, wait until blood counts go up.

Here we go... again. The best case is that we could get discharged is Oct 31.

Tuesday, October 16, 2012

Playing "Soccer" on the Weeekend

video a video by Troy and Karla Gould on Flickr.
Liam has some mild Posterior Fossa Syndrome from his surgeries, but overall we are incredibly lucky at how well he has done. Liam's tumour was in the cerebellum, in the posterior fossa area of the brain, surgery here can cause problems with motor skills (many kids end up unable to walk, some unable to speak). Liam has some shaking in his hands, but is doing really well with his fine motor skills, through doing lots of small Lego activities, stickers and colouring.

Physio encourages us not to let Liam live in a bubble, as kids will fall! The way for his motor skills to improve is doing what kids do, running, jumping, climbing, etc, especially on uneven surfaces like grass.

Seeing Liam run around the yard is just so wonderful to see.

Sunday, October 14, 2012

This week

It's been a glorious 5 WHOLE days without having to go to the Children's Hospital.

This coming week we have Liam's regular audiology and kidney functioning tests. Then we have Liam's bloodwork and physical exam on Thursday to proceed with the third and final round of high dose chemo with stem cell rescue starting Friday. At this point, it is getting more heartbreaking seeing Liam getting better, then going back to knock him down again. It's harder on Liam every time, so it won't be surprising if this round is the hardest on him.

On a side note, Liam has been eating some food, which we love to see. He's been eating cereal and his old favourite Annie's White Cheddar Shells. He still needs his NG feeds, but it's great that he gets some eating practice in between chemo cycles.

Saturday, October 13, 2012

More energy every day

Liam's pretty proud of his Cars Lego! It appears as though if Liam is not holding Teddy, Teddy still manages to get in the picture.

Liam is up and playing a little more each day. Yesterday, Liam watched a movie for a few hours in the afternoon, but didn't sleep at all during the day. The rest of the day Liam was up playing.

Tuesday, October 9, 2012

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

Sunday, October 7, 2012


What a surprise, Liam's ANC was 500 this morning, so he was able to be discharged today.

I think they were trying to get kids discharged for Thanksgiving, it's going to be nice for everyone to be home for Thanksgiving dinner. It's been exactly 3 weeks that Liam's been in the hospital.

Friday, October 5, 2012

Vomiting and Transfusions

Just like last cycle, Liam is experiencing vomiting, they feel like he shouldn't be vomiting from chemotherapy this far out (it's been over a week), but he's following the same pattern as last time. Liam has been vomiting once every day, then yesterday 3 times, poor kid, he's got every anti-nausea medication they can give him.

Because all Liam's blood cell counts are pretty much at the bottom (we hope he is on the up turn now or soon), he is more tired today, he slept all morning and a few hours this afternoon. This week, the only times Liam has slept has been in the carseat on the way home or back to the hospital, so it's no wonder he is tired today, it's been a big deal going home on day passes, on top of having low blood counts.

This afternoon Liam got a platelets transfusion and a red blood cell transfusion. Hopefully the red blood cells will perk him up. I always say a little thank you to the bags of blood.

During the transfusion, they take Liam's blood pressure every 15 minutes, when he's tired he stops fighting the blood pressure cuff, normally he's not too keen to leave it on.

Wednesday, October 3, 2012

Happy About Going Home for a Few Hours

Dance time a video by Troy and Karla Gould on Flickr.
We are all happy about Liam being able to go home for a few hours every day.

We don't know if we'll be able to continue every day, but we'll take the opportunity when we can.

Monday, October 1, 2012

Feeling Well & Getting "Day Passes"

I haven't had a lot of time to post, we've been busy, because Liam has gotten 3 days of DAY PASSES! Depending on what time Liam needs IV antibiotics, we are able to get day passes for the hours in between antibiotics. It's not an actual "day", but a short time out of the hospital room is still great, Liam has 4 hour breaks between his antibiotics.

Saturday late afternoon, we all played at the hospital soccer field and park for a couple of hours. Sunday and today (Monday), we have taken Liam home for about 3 hours. It has been an awesome change of pace, glad we are getting this opportunity to get out for a little bit.

I will post pictures from our outings soon.

Sunday, September 30, 2012

Day Pass Trip Home

Liam has been getting daily "day passes", we were finally brave enough to bring Liam home. We we worried that going home would mean a big "break down" to get Liam back to the hospital. But, we explained to Liam we were going home to pick up toys and have a bit of play, and he was ok going back to the hospital.

What a great break from the hospital 4 hours is! We are fortunate to be only 20 minutes away from the hospital so going home is an option for us. 

The doctors decide day by day whether a "day pass" is appropriate, depending on Liam's blood cell counts, and just in general, how Liam is doing. Liam's blood cell counts have not hit 0 yet, so the toughest days, in terms of how Liam feels are yet to come.

Saturday, September 29, 2012

Soccer Time

Liam ran and ran, we all looked with amazement at how well he was running and how much he ran around.

With Liam's day pass, we spent a couple of hours on the soccer field and at the playground at the hospital. This is the best physio therapy for Liam!

Friday, September 28, 2012

Stem Cell Infusion Done

Liam got his stem cells around 3:30 today. The preservative made him cough a little, but he also vomited this time, despite having many anti-nausea medications.

He is feeling ok now, back to playing, but no smiles for the camera.

Today is called "Day 0", so now we wait for Liam's blood counts to drop and come back up, hopefully in 10 days.

Liam's Bath Reward Chart

Teddy wanted a picture of the chart :-)

Thursday, September 27, 2012

Stickers & Painting

Liam plays most of the day, but he mostly wants to stay in bed to play, this was the only time he played out of bed today, at the painting easel.

Quiet Day in Between Chemo & Stem Cell Rescue

Liam's a very tired guy. Two nights of going to bed late because of his bath, then getting up in the night for a bath at 3am, and getting up several times to go to the bathroom. Thank goodness the bath and dressing change every 6 hours is over, now it will be daily.

Liam had one tiny bite of banana, and one tiny bite of cheese, but that was all yesterday and today, I don't know how he doesn't get hungry. Well, he does get very grumpy, somehow it's just not enough to get him to want to eat. I can only imagine the number of things the chemo is doing to his stomach and taste buds. Tonight, we put the NG tube back in.

Tomorrow is stem cell rescue day, so it will be a big day for the little guy.

Tonight is Liam's 12th night in the hospital this admission, it's getting to be a blur. Last time was 18 nights, so we are definitely going to exceed that this time. The total nights is now 63 nights that Liam's stayed in the hospital.

The best case that we can hope for, is to get discharged is in 11 days.

Wednesday, September 26, 2012

Chemo Day 2 Baths for Liam and Baby Teddy

Liam is not thrilled about his baths and dressing changes for his central line every 6 hours. At 4:00am he jumped up and down in the tub crying. I put on Backyardigans during his dressing change, because he needs to stay still, he needs something to keep his attention. Unfortunately though, he woke up a bit too much, and then after the Backyardigans were over, he needed a bedtime story at 4:30am!

Liam was tired this morning, he was pretty grumpy, thank goodness he had a good nap today, he needed it.

His skin is looking dark in spots, the thiotepa must be affecting him more this time. He is darker around his neck and on his stomach, they say it won't be permanent.

Liam could also be grumpy because he hasn't eaten all day. He has taken his oral medications by mouth with a bit of juice, but that is all.

Unfortunately, Liam's favourite blue bear also has to go home for a bath, which was a BIG problem today. The 2 other identical blue teddies just aren't the same! His favourite one is now called "baby teddy". When baby teddy went for a bath, Liam was very sad because he said baby teddy was alone and crying, and baby teddy needed him! But, now Liam has "mommy teddy", and seems to be fine this afternoon with "mommy teddy". The teddies having names is fairly new.

Tuesday, September 25, 2012

Consolidation Cycle #2 of 3 Started

Liam's fever has stayed away now for 24 hours, so the next cycle of chemo started this afternoon.

The doctors have to balance making sure Liam is healthy enough for the high dose chemotherapy, with minimizing the delay of the next cycle.

Today and tomorrow, Liam gets 4 hours of chemo both days. And as we did with consolidation cycle #1, Liam needs baths every 6 hours. I've talked to him about the baths and he is already crying about it, he hasn't even had his first bath yet! The middle of the night baths were the easiest last time, when he was half asleep, he protested less.

The BMT (bone marrow transplant) team will try to organize the stem cell rescue for Friday, but it requires coordination with the "bank", and will depend on the chemo starting on time tomorrow. Ideally, Liam will have the stem cell rescue on Friday, but it could end up being on Monday, as it did last time.

If Liam follows the same pattern as last time, the high dose chemotherapy didn't really hit too hard until a few days following the stem cell rescue day.

Liam also can't have any tape on him (due to the chemo being excreted from his skin), so we have to take out his feeding tube for the next couple of days. Since he got back to the hospital, Liam has not been eating anything by mouth, so here's hoping he gets hungry enough to actually eat something again!

Sunday, September 23, 2012

Fever returned

Well, Liam was off antibiotics for 24 hours and his fever returned. Nothing is testing positive, so they just don't know why he keeps getting the fever.

As a result, chemo hasn't started again.

We will see what the doctors have to say tomorrow.

Friday, September 21, 2012

Busy day of Play

Liam had a big day! First he had a visit from Grandma and sister, they set up train tracks and almost kind of played together.

Then this after Marc the music man came to Liam's room for music therapy. This time Liam was much quicker to warm up to him, Liam loves music.

Then Liam went to the play room - first time out of the room since we arrived Sunday! Friday is video game day in the play room, the volunteer patiently played Toy Story with Liam for an hour, lucky for Liam he was the only one in the play room, so he didn't have to take turns!

After video games, we got back to the room and did a huge puzzle. He wanted to do the puzzle, because he "wanted to scare the nurse when she came in". That is how I know he likes his nurse today! In the picture, Liam is showing teddy his work (the puzzle).

Liam hasn't had a fever again, so if he continues without a fever, he will get chemo Saturday and Sunday, then the stem cell rescue on Tuesday. 

Thursday, September 20, 2012

Finally less (no?) fever

Liam has almost made it a whole day without a fever, finally! They switched the type of antibiotics, but it's hard to say whether that was it, or it was just time for this *whatever it was* to go.

I'm sure it's not a coincidence, Liam played a little bit more today.

Not much else to report. If Liam goes without a fever for 48 hours, they may start his chemo on the weekend, or they might just wait until Monday (it seems to depend which doctor we speak to on that).

With some luck, maybe Liam can even leave the room, he's been on isolation this whole week, to protect the other kids on the unit. We admitted Sunday night, it's a long time for him to not leave the room at all.

Wednesday, September 19, 2012

Fever Persists

Liam went the whole afternoon yesterday without a fever, but it returned late afternoon and through the night.

First thing this morning he did not have a fever, but has a fever again now. Hopefully this means there is a progression to NO fever. No fever soon would be good.

Although, the way Liam was playing this morning, he was happy and looks really good, you really wouldn't have known he has a fever. Liam was very happy to have a visit from sister and Grandma this morning!

Tuesday, September 18, 2012

Liam's Journey - Summary of Treatment

I updated the page "Liam's Journey" (link at the top of the blog) to give those interested a better big picture understanding of what Liam's gone through so far, and what treatment is remaining. I will try to keep this updated as we go.

Go to Liam's Journey.

Liam's Middle of the Night Request

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!

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.

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...

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.

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!

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.