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.

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.

Weekend

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.

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.

You're Beautiful

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

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.

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.

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!

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.

Preschool

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.

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

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.

Clinic

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.

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.