Thursday, January 31, 2013

Caring For Kids Radiothon

Tune into Country 105 Wednesday at 10am to hear us tell Liam's story! After the last 9 months, this is a small way for us to give back to the Alberta Children's Hospital for all they've done for us.

Caring For Kids Radiothon

Wednesday, January 30, 2013

Treatment Complete

Looking back, it is unbelievable what Liam has gone through in the last 9 months. When we started this journey, we had no idea what we were in for, and had no idea how Liam would do. And here we are, amazed at how well Liam has done. Not without hiccups along the way, of course, but he is doing so great.

Liam is still quite tired, so he gets really grumpy in the afternoon and goes to bed early. But, he still gets up at 6:00am, and won't nap during the way. Apparently it will take a few weeks before the radiation stops affecting his energy.

We made our last trip to the Tom Baker Cancer Centre for Liam's last radiation treatment yesterday (Jan 29). When Liam started radiation, I dreaded going there, but I didn't know how wonderful the people would be. Liam made quite a name for himself by doing the radiation without anesthetic, when we walked down the hall, almost everyone would say hi. The radiation team on "Unit 10" were amazing. Every day at Liam's appointment time, they would bring Felix the frog out to get Liam, then we'd all have a race to get to the room, this part was pretty brilliant, there was never any delay! Then Liam, "baby teddy", Felix the frog and Felix Jr would all give high fives to each other. We would take Liam's shirt off, get him up onto the bed, he'd get teddy, then promptly lay down. When in position, they would start the iPad with his show of choice, they put the mask on and clamp it down, move the bed up and over into position and he'd be ready to go! Obviously, because of the radiation no one would stay in the room, but once the iPad was playing, Liam didn't notice who was around.

After Liam's last treatment, he put the last sticker on his progress chart. Every day Liam got to pick a prize, by the end he was almost always getting Lego people, he has quite the collection now. The last day prize was a Lego Police car with 2 Lego men and a puzzle, he was very pleased. Then everyone went over to the ring the bell, everyone came along. Liam loved ringing the bell! Then he tied a gold ribbon for pediatric cancer on the wall.

As I've mentioned before, we have many follow up appointments and checkups, but this is the final stage of actual treatment. I must admit, it is hard to be really relieved until we know that treatment killed the beast and there is nothing there. Liam's MRI and lumbar puncture will be in about 4 weeks, this will let us know if there is any disease. Then he'll get an MRI every 3 months for 2 years. As much as we want to jump up and down with excitement, we are still living with so much fear of this horrible disease. When will we be able to jump up and down for joy, I'm not sure. In 2 years? In 5 years?

We are so proud of how well Liam has done, this kid is one serious warrior. The best part is now Liam can recover, get healthy and feel good again.

Tuesday, January 29, 2013

Last radiation treatment done!

We had Liam's last radiation treatment this morning at 8am! Now we are at the Children's Hospital for some more appointments. I will post pictures later when I get a chance. Very excited to be done!

Monday, January 21, 2013

Day out Skiing

Kids Cancer Care Foundation of Alberta put on a fun day of skiing at COP this weekend. We weren't sure if Liam would be up for skiing, he's been so tired. But Liam was very enthusiastic about getting on skis and smiled the whole time. We took a break and he wanted to go out for more! Liam went for a lesson, then he went up the magic carpet (by himself) and down the bunny hill several times.

Only 6 more radiation treatments to go!

Wednesday, January 16, 2013

On the home stretch of treatment

Liam is done 21 of 30 radiation treatments, we are on the home stretch! He is still doing treatments without anesthetic and doing really well. Liam is still really tired, although he is still attending preschool when we don't have other appointments. He loves preschool, but on preschool days, Liam is so tired and miserable the remainder of the day until bedtime. Today he went to bed at 5:30pm, that was much easier on everyone. 

On a side note regarding the kids getting anesthetic for treatments, I was told  that St Jude's Children's Hospital generally doesn't try doing radiation without anesthetic for kids under 8 years old! For kids with the same disease as Liam, they get daily anesthetic for all 30 treatments. I wouldn't have ever guessed that it would work, I am so thankful to our radiation therapists for taking this initiative to help the kids.

We registered Liam in Kindergarten for September! Something that feels normal is very exciting for us.

We don't know how it will be for Liam to be in a class with kids with regular kid germs, we will find out when we get there. Although he will be able to get the flu shot next year. Liam will also have a lot of appointments, so between the two, we hope he's not impacted too much.

Many people have asked "what next". January 29 is the last radiation treatment, and the end of Liam's treatment! After this, Liam will have monthly physical exams and bloodwork done. In February, he will have an MRI, lumbar puncture and audiology exam, then each of these again every 3 months for 2 years. Every 6 months to a year, he will have Echo/ECGs, neuropsych evaluations, endocrine function and kidney function checks. We currently have had Physio/Occupational/Speech therapy every month or so through treatment, I'm not sure how often we will have these once we are done treatment. We'll try to squeeze in regular dental and eye exams as well. Although we're done treatment end of January, it feels like this is going to be a lot of visits to the Children's Hospital for the first couple of years.

Regarding Liam's eating, that isn't improving at all, it's just gotten worse. So far this week, all Liam will eat is a few Smarties at preschool snack time. He won't eat more than 4 or 5 Smarties though, so it doesn't really count as anything. We were really hoping his eating would improve.

Friday, January 11, 2013

Hair & radiation

Liam's hair is growing in so nicely, the radiation has caused him to lose it again in the area of radiation. Quite the "battle wounds" he has, the area is a bit more red from the radiation, but doesn't seem to be sore.

He ate about 5 bites of this toast, we celebrate every bite he eats!

Wednesday, January 9, 2013

16 of 30 Radiation Treatments Complete

Liam has done 16 of 30 daily radiation treatments. He's still doing very well, each treatment is done fairly quickly, and he's still doing them without anesthetic. (we have weekends off) This is the sticker chart that they made him to track how many treatments he's done. He doesn't have much redness or soreness in the area, but he lost all the new hair at the back/bottom of his head where he is getting radiation. It may not grow back there, or might be sparse, everyone seems to be different.

This week, Liam has become noticeably more tired, the radiation is taking a lot out of him. Unfortunately, this means he's not feeling 100% and therefore stopped eating as well. He was eating small amounts of milk, cereal, cookies and soup during the day. Yesterday, Liam didn't eat anything at all by mouth, today he ate one cookie. His weight is also a bit down, because we haven't been giving him full tube feeds, in hopes that he will get hungry and eat. As of yesterday, we're boosting the volume of tube feeds up again, so he doesn't lose weight. The tiredness is expected, and will likely last a few weeks (hopefully only a few weeks) after he is done radiation.

Liam ate birthday cake on the weekend!

Monday, January 7, 2013

2012 in Review

We started out 2012 with Madison's first birthday, and I (Karla) went back to work in early January.

February and March were filled with anxiety as Liam's vomiting was becoming more frequent, but we were unable to get any answers. Many phone calls, appointments and various scans, our doctor was getting Liam as many tests as we could, but the referral to a gastrointestinal specialist had a 2 month wait. We finally just took Liam to the Alberta Children's Hospital here in Calgary on April 30.

The triage nurse at the Children's Hospital immediately sent Liam for CT scans and was asking neurological related questions, it was like she knew right away. This is where life took a turn, and will be the day we will never forget. "Your son has a brain tumour".

This picture was taken the morning before Liam went to the hospital, our last moments of blissful ignorance.

Liam got admitted and stayed in the hospital the night before surgery. He didn't understand what it meant for him to go into surgery the next day, but he knew things were not right. For us, on the other hand, torture not knowing what would happen to our beautiful little boy after the surgery.

Multiple surgeries, many MRIs and scans, 6 months of chemotherapy, 3 stem cell transplants, he stayed a total of 86 nights in the hospital, and now we are in the middle of 6 weeks of daily radiation.

The amazing thing about kids this age is they don't ask "why me", they don't feel self pity. Liam just keeps on playing and playing. Liam was able to enjoy Christmas to the fullest. Liam was able to attend Jamie's preschool for November/December, and will continue in the new year, he absolutely loves it.

Who would have thought through all Liam has gone through, he would have the balance and coordination to even be able to skate. Liam's first time out skating this winter, a week ago, he was really scared of falling, but he had no problem walking with the skates off the ice, and was able to balance on the ice.

Liam has some challenges, he'll continue with physio/occupational/speech therapy. We also need to figure out how to get Liam to eat after treatment is done, so he can gain some weight. But, otherwise, we are so, so thankful and fortunate for how well Liam has done throughout all he has gone through.

Bring on 2013!

Sunday, January 6, 2013

Wish for Liam

We got a call last week to tell us that Liam has been nominated and will receive a wish from Children's Wish Foundation! 

The obvious destination for Liam's wish is Carsland, otherwise known a Disneyland. For those without Cars crazy kids, Carsland opened earlier this year at Disneyland, it is a replica of the town Radiator Springs in the first Cars movie. Every time the commercial comes on tv, Liam perks up and asks when we can go to Carsland.

It will be a wonderful way to celebrate our end of treatment. We don't have a plan for when it would be yet, we still have to finish everything and get the go ahead from the doctors, etc. But very nice to have this to look forward to.

Wednesday, January 2, 2013

Eyebrows and Eyelashes

Look at those eyelashes, eyebrows and pink cheeks! I hadn't really noticed Liam's eyebrows gone, until they started growing back. Liam doesn't care whatsoever about his hair growing back... and neither do we. To us, it represents recovery and coming to the home stretch of treatment.

I was taking a picture of Troy the other day and Liam asked if I was taking a picture of Troy's hair growing back :-).

Tuesday, January 1, 2013

Happy New Year!

Liam has been enjoying himself so much over the holidays.

We joined our neighbors in celebrating on New Year's Eve, Liam got to play with their new puppy, which he loved. Liam managed to stay awake until around 11:00pm, which surprised us since he's been asking to go to bed earlier lately. Just asking to go to bed tells us he is more tired, he would normally never do that.

New Year's Day, despite going to bed late, Liam was up early (as per usual). Then Liam attended 2 different get togethers on New Year's Day! He was SO happy to see his friends, and it felt so normal to be able to go to their houses and visit. It is difficult to describe how good normal feels right now.