Wednesday, November 27, 2013
MRI Postponed
Liam's MRI is postponed until next week because he is sick. There is additional risk with anesthetic when you are sick, so we will wait.
Monday, November 18, 2013
9 Month Post Treatment MRI
As time goes by, we start to feel a little more "normal" between MRIs. We almost feel normal, then 3 months passes and the MRI reminds us of how life is not normal when someone in your life has cancer. Every time it takes time to recover from the emotional exhaustion of the tests and waiting for results. Cancer is evil, and having it return is devastating. (For medulloblastoma, the survival rate of relapse is less than 5%) Liam is doing so amazing, I wish we could say we were "out of the water". We are still in the highest risk time frame, hence why MRIs are still every 3 months. Once we have passed the 2 year mark, we can breathe slightly easier, and MRIs become less frequent. At 5 years out, we'll be much more relieved.
I got the confirmation call from Diagnostic Imaging today, so scanxiety has officially kicked in. Liam's 9 month MRI is next week. We are happy that we got a morning appointment, since he has to fast before the appointment. The 9 month follow up does not include a lumbar puncture.
I got the confirmation call from Diagnostic Imaging today, so scanxiety has officially kicked in. Liam's 9 month MRI is next week. We are happy that we got a morning appointment, since he has to fast before the appointment. The 9 month follow up does not include a lumbar puncture.
Sunday, October 20, 2013
One Year Ago
When I asked Liam how he felt being in the hospital on Halloween last year, he told me he was sad because he missed his sister. No doubt he did, he was in the hospital a good amount of the last 3 months.
Liam had chocolate cupcake on his face in the picture. It was one of the short times he did not have his NG tube during treatment.
Hydrocephalus
Last week we had another touch base with the neurosurgeon. After finding out Liam is having double vision, we had to discuss if this was a symptom of the hydrocephalus (pressure on his brain). Since Liam is still on the cusp of having to do something about the hydrocephalus, the double vision was another concern. The good news is that the type of double vision Liam is having is not generally caused from pressure from hydrocephalus. The double vision is likely a side effect of the surgery. We are waiting on an appointment with the ophthalmologist to discuss what to do. They'll measure the hydrocephalus again in the next MRI already coming up next month.
Immunizations
Liam starts getting his immunizations this week. He can't get any live vaccinations until 2 years out. This week he'll be starting over with all the dead vaccines. After all he's been through, Liam fights very hard with every little medical thing. I'm not sure how the nurse is going to give him 4 shots, I'm sure it will cost us in more bribery toys!! I'm having a flashback to the last NG tube placement where Troy and a male nurse had to hold Liam down, while another nurse did the NG tube.
Sunday, October 6, 2013
Thank You!
Thank you everyone who sponsored Liam for the Wishmaker Walk for Wishes, Liam raised $1,395!
The kids just LOVE Roary from Children's Wish. There were other characters there that day as well, and a bouncy castle, ice cream candy and more. It was a very fun day for the kids.
In the pictures, you can see Liam has his own Roary, who came to walk with us. All kids granted wishes receive their own Roary. As Liam's wish was to meet Lightning McQueen & Tow Mater, he wore his Lightning McQueen racing suit.
A chilly start to the day ended up being a gorgeous day for a 5K walk. Thanks to our friends who walked with us, a fun day for all!
Thank you everyone! It's great to know that we are a small part of helping grant other kids their wishes.
The kids just LOVE Roary from Children's Wish. There were other characters there that day as well, and a bouncy castle, ice cream candy and more. It was a very fun day for the kids.
In the pictures, you can see Liam has his own Roary, who came to walk with us. All kids granted wishes receive their own Roary. As Liam's wish was to meet Lightning McQueen & Tow Mater, he wore his Lightning McQueen racing suit.
A chilly start to the day ended up being a gorgeous day for a 5K walk. Thanks to our friends who walked with us, a fun day for all!
Thank you everyone! It's great to know that we are a small part of helping grant other kids their wishes.
Sunday, September 22, 2013
Wishmaker Walk for Wishes
One more week until the Wishmaker Walk for Wishes! A huge thank you to everyone who has already sponsored Liam!
As you know, we had an amazing wish trip in April. It was an amazing way for our family to have a wonderful experience after everything we had been through the year before our trip. Children's Wish does everything possible to make the experience very special. We'd love if you help us pay it forward and give other children and their families this special gift.
Liam's fundraising page:
http://my.e2rm.com/personalPage.aspx?registrationID=2050014
Or, if you want to walk with us, please join our team! Here are the details:
Location: Calgary
When: Sunday, September 29, 2013
Venue: Eau Claire Market
Address: 200 Barclay Parade SW
Registration Time: 1pm
Walk Time: 2pm
Celebration Time: 3pm
Click here to join our team: Walk with Team Gould!
Childrens Wish on Facebook
Lots of Updates
Kindergarten
Liam started Kindergarten! It's a big change for all of us to all of a sudden have a routine, we haven't done the same thing every day in a long time. On the first Friday, Liam commented that it was "over" he thought Kindergarten was a week like camp! Liam says he doesn't want to go to school anymore. But he goes to school fine, and talks about how much he loves all the activity centres. The teacher lets us know what they are learning, for example this week is triangles. He walks around pointing out everything that is a triangle.
We had our first meeting with the teacher. Liam is slow to warm up to people and new situations so it took a couple of days for Liam to speak to his teacher. Liam likely will qualify for some in class OT to work on his pencil skills. He's come a long way, but I want him to get some extra help to continue his progress. He may also qualify for in school PT. In gym, the teacher asked the kids to hop 12 times in a row, and Liam was the only kid in the class who did it!
Appointment with Oncologist
We had our 6 month follow up appointment with Dr Lucie. At this point, appointments are pretty fun and relaxed after having a clean MRI and lumbar puncture. They did the usual neuro tests that they do with his physical exams. All Liam's blood counts are very good.
Hydrocephalus
To everyone's surprise, the hydrocephalus has decreased slightly. After increasing every 3 months since December, they were expecting a trend of increase to continue. Thankfully we don't have to face surgery or a shunt for now. It is still more fluid than "normal", but he may just adjust to that level and we just hope for no more increase.
Weight
Liam has gained weight for the first time since diagnosis April 30, 2012! (not counting days of steroids with temporary weight gain)
Sept 9, 2013 16.9 kg/37 lbs and 106.5 cm
May 13, 2013 14.9kg/33 lbs 104.3 cm/3'5"
May 23, 2012 15.2kg/33.5 lbs 99.3cm /3'3"
Eating
Liam is eating more food, but has only added a couple new foods to his repertoire of 10 foods. He is still just eating the same things every day. But, we are not adding whipping cream and oil to his foods any more, it is positive that he gained some weight with what he is eating. Many kids will take appetite stimulant, so it's great that we haven't had to do that.
To give you an idea about how resistant Liam is to new foods. We are always trying, with no success to get him to try something new. No amount of bribery/reward has any effect. But, we did have success recently, we decided to try to get Liam to try pizza. Before diagnosis, Liam would eat sausage and cheese pizza. We got sausage and cheese pizza (nothing else), and explained to Liam that he has eaten it before. We picked a tiny piece of sausage off of the pizza. Liam spent 5 minutes looking at the sausage, with a few touches to his tongue. After 7 minutes, he took the tiniest bite possible. After 10 minutes, he ate half of a tiny piece of sausage. After 15 minutes, we cut a tiny piece of the pizza crust and he ate it with the sausage. In the end, a HUGE success, he actually ate a few bites of pizza!! It was a big surprise to us that he tried it. We have no idea what factors were aligned to get him to try it that day.
(For anyone who knows Daniel Tiger, we've watched the episode on trying new foods a million times!)
Vision
When doing the neuro exercises, Dr Lucie observed Liam doing his head tilt still and suggested that he should get checked for double vision. We went to an optometrist and sure enough he has an eye misalignment, which leads to double vision when he's tired. He tilts his head to compensate. (not uncommon with brain tumours, may be due to the pressure on his brain) It wasn't conclusive (he lost patience with the tests), but it also appears that he may not be able to see 3D.
Vaccinations
The news I hated to find out is that Liam has to be re-vaccinated for everything. Initially we were told that Liam did not have to be re-vaccinated, but the information was based on a different protocol. We got the info from the right source, and the conclusion is that he has to have all of vaccinations done again. He's going to lose his mind getting this many needles. How nice it would be if Liam could just have some medical free time.
Liam started Kindergarten! It's a big change for all of us to all of a sudden have a routine, we haven't done the same thing every day in a long time. On the first Friday, Liam commented that it was "over" he thought Kindergarten was a week like camp! Liam says he doesn't want to go to school anymore. But he goes to school fine, and talks about how much he loves all the activity centres. The teacher lets us know what they are learning, for example this week is triangles. He walks around pointing out everything that is a triangle.
We had our first meeting with the teacher. Liam is slow to warm up to people and new situations so it took a couple of days for Liam to speak to his teacher. Liam likely will qualify for some in class OT to work on his pencil skills. He's come a long way, but I want him to get some extra help to continue his progress. He may also qualify for in school PT. In gym, the teacher asked the kids to hop 12 times in a row, and Liam was the only kid in the class who did it!
Appointment with Oncologist
We had our 6 month follow up appointment with Dr Lucie. At this point, appointments are pretty fun and relaxed after having a clean MRI and lumbar puncture. They did the usual neuro tests that they do with his physical exams. All Liam's blood counts are very good.
Hydrocephalus
To everyone's surprise, the hydrocephalus has decreased slightly. After increasing every 3 months since December, they were expecting a trend of increase to continue. Thankfully we don't have to face surgery or a shunt for now. It is still more fluid than "normal", but he may just adjust to that level and we just hope for no more increase.
Weight
Liam has gained weight for the first time since diagnosis April 30, 2012! (not counting days of steroids with temporary weight gain)
Sept 9, 2013 16.9 kg/37 lbs and 106.5 cm
May 13, 2013 14.9kg/33 lbs 104.3 cm/3'5"
May 23, 2012 15.2kg/33.5 lbs 99.3cm /3'3"
Eating
Liam is eating more food, but has only added a couple new foods to his repertoire of 10 foods. He is still just eating the same things every day. But, we are not adding whipping cream and oil to his foods any more, it is positive that he gained some weight with what he is eating. Many kids will take appetite stimulant, so it's great that we haven't had to do that.
To give you an idea about how resistant Liam is to new foods. We are always trying, with no success to get him to try something new. No amount of bribery/reward has any effect. But, we did have success recently, we decided to try to get Liam to try pizza. Before diagnosis, Liam would eat sausage and cheese pizza. We got sausage and cheese pizza (nothing else), and explained to Liam that he has eaten it before. We picked a tiny piece of sausage off of the pizza. Liam spent 5 minutes looking at the sausage, with a few touches to his tongue. After 7 minutes, he took the tiniest bite possible. After 10 minutes, he ate half of a tiny piece of sausage. After 15 minutes, we cut a tiny piece of the pizza crust and he ate it with the sausage. In the end, a HUGE success, he actually ate a few bites of pizza!! It was a big surprise to us that he tried it. We have no idea what factors were aligned to get him to try it that day.
(For anyone who knows Daniel Tiger, we've watched the episode on trying new foods a million times!)
Vision
When doing the neuro exercises, Dr Lucie observed Liam doing his head tilt still and suggested that he should get checked for double vision. We went to an optometrist and sure enough he has an eye misalignment, which leads to double vision when he's tired. He tilts his head to compensate. (not uncommon with brain tumours, may be due to the pressure on his brain) It wasn't conclusive (he lost patience with the tests), but it also appears that he may not be able to see 3D.
Vaccinations
The news I hated to find out is that Liam has to be re-vaccinated for everything. Initially we were told that Liam did not have to be re-vaccinated, but the information was based on a different protocol. We got the info from the right source, and the conclusion is that he has to have all of vaccinations done again. He's going to lose his mind getting this many needles. How nice it would be if Liam could just have some medical free time.
Monday, September 2, 2013
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