MRI, Camp & Tour for Kids

I must admit, I do not remember to post to the blog these days. I am happy to say that life is mostly "normal" and not blogworthy!

The best news of the summer is that Liam had another clear MRI. This time was another full head and spine MRI with contrast. The enhanced areas in the spine that they were watching did not appear in this MRI. We haven't actually had Liam's checkup with the oncologist yet. We went straight from Liam's MRI to vacation, then the oncologist was on vacation when we got back, so we don't see her until the end of this month. The neurosurgeon is/was also on vacation, so we haven't seen him either. Such is life in Calgary, summer is short. We still keep in touch with the neurosurgeon to review the hydrocephalus after the surgery in November. I don't know how long we stay on 6 month MRIs... I still just focus on getting through one MRI at a time.

We had another wonderful Tour for Kids Alberta ride in July! We had a very chilly, wet first day. Then Day 2 & 3 were sunny and beautiful. It is such an amazing group of riders and volunteers. The Tour for Kids is a challenging and emotional experience, I am so proud to be a small part of it. Thank you to everyone who supported to me! Thank you for putting a smile on a child's face and helping families who have endure this awful disease. I can tell you first hand that Kids Cancer Care and Camp Kindle have been such a support to us since Liam's was diagnosed with brain cancer in 2012.
 

Liam and Madison both attended Kids Cancer Care's Camp Sunrise again this year. They had a great time and loved it very much. They attended day camp in Calgary, and they stayed overnight at Camp Kindle Thursday night. They did great at overnight camp and loved it! They have some very special friends that have been at camp together a few years now.

When I think back to this time of year in 2012 when Liam was in the middle of treatment, it is hard to believe Liam is going to be starting grade 2 this year. Treatment has left Liam with challenges, but we continue to figure out how to adapt. We are very fortunate that the school has been helpful in working with us to support Liam. Grade 2, here he comes!

Tour For Kids July 2015

It’s that time again! I have been trying to squeeze in bike rides whenever I can, in between kids end of year activities. This will be my second year riding the Tour for Kids Alberta. It was an AMAZING experience last year.

Last year was quite the adventure for my first ride. It was a sad and scary sight to see forest fires burning. Days before the ride, trees and grass had burned right up to the highway we were on. We rode past a bear on the side of the road. David Thompson Resort is a great place to stay, the area is so beautiful. We also get to stay at Camp Kindle, it is a truly special place.

I was honored to spend three days riding with the most amazing people. It was amazing to know that I was taking on this challenge for not only Liam, but other kids and families who have been impacted by childhood cancer.

I am doing the ride for so many reasons. The main reason is because I want to do a small part for childhood cancer. 100% of your donations go to childhood cancer, including Kids Cancer Care and Camp Kindle. Kids Cancer Care and Camp Kindle have been there for us through Liam’s journey and since. Kids Cancer Care puts on events that allow our family to spend wonderful days together and meet other families going through treatment or have in the past. Liam has gone to camp the last two years, and Madison attended with him last year. It's a special camp for our kids to share with kids who have gone through the same experiences with cancer.

Liam has unique challenges that are a result of having a brain tumor, going through surgery, chemotherapy and radiation. It is a challenge for him to keep up with other kids. We are so fortunate that Kids Cancer Care provides him with the support he needs so that he can have fun with other kids.

The Tour for Kids was a physically and emotionally challenging experience for me. But the ride was nothing compared to what Liam endured through his treatment.

Please support me as I take on this crazy three day cycling adventure for the second year!

Thank you all!

Link to my donation page:   https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2701029&langPref=en-CA

Photos from 2014

  Map of the ride:

note: I will be riding the 100 KM routes! 

http://www.tourforkids.com/alberta/

3 Years Since Diagnosis

3 years ago today was the day Liam was diagnosed with a cancerous brain tumour. "Your son has a 4cm tumour in his brain", one of many statements from that day that still haunt me. Another year has gone by, but this time of year still brings back so many memories of the worst day of our lives.

Liam is now getting MRIs every 6 months. This is the first 6 month stretch without any big medical activities. 6 months is wonderful, and gives us all more time for "normal" life without hospital visits and stress. We can even see a change in Liam having more hospital free time. Every time he has an MRI or surgery, Liam gets set back emotionally.

Liam recovered well from the hydrocephalus surgery in November. The MRIs show there is less pressure on his brain, which is what we hoped for. It will be monitored in all his MRIs, in case the fluid could start building again.

In terms of recurrence, every day/month/year away from the date of diagnosis is better. 3 years post diagnosis has a drop of recurrence rates, but 5 years out is the timeline we look forward to crossing. Fear of recurrence will be at the back of our minds a long time. This disease is a cruel, unforgiving monster.

Liam is doing amazing and enjoying life. He loves his friends at school very much. He (mostly) enjoys going to school and loves to read. We are very scared and frustrated that the education budget cuts might  affect the support Liam currently gets in school. It is crazy that this should even be a concern, but the school can’t confirm Liam will get the support he needs (what he is getting now, in grade 1) next year in grade 2.

I think everyone knows by now that Liam's new favourite movie are the Star Wars movies. The days of the Cars movie characters and Backyardigans (the characters at the top of the blog) are over, it’s a little sad! He’s officially a “big boy”.

A friend shared this blog posting the other day with great points that are so true.

http://acancermomslife.com/2015/04/25/15-truths-of-having-your-child-diagnosed-with-cancer/

2 Year Post Treatment MRI

Today is 2 years since the last day of Liam's treatment. Jan 29, 2013 was his last day of radiation treatments.

Yesterday, Liam had the 2 year follow up head and spine MRI and bloodwork. The MRI was clear!

I will post more details later, I just wanted to post the GREAT news.

Good Weekend

We had a quiet weekend at home, trying to keep Liam to quiet activity. He stopped taking Tylenol... he is SO stubborn! He says the incision site hurts sometimes, but only if we ask. 

Liam was back to himself all weekend. It seems crazy that he could feel so good right after surgery. It makes me wonder about how much of his life (before diagnosis, during chemo & radiation) he has spent with pain, to take pain with such stride like he does.

We weren't sure, but Liam wants to go to school tomorrow. Liam really misses his friends, he's excited to see them and his teachers.

We had to wait to wash Liam's hair to give the stitches time to heal. We were able to tonight. After washing, Liam asked to comb his hair to cover his stitches. He is self conscious of his scars, he already wants to keep his hair longer. In Kindergarten, a classmate saw his scar and told him to go to the hospital to get it fixed. Liam takes the little things to heart.

Liam has dissolvable stitches, so he doesn't have to go see the doctor right away. We follow up with the surgeon in a month.

Discharged

Liam was discharged and we are home!

Liam's MRI was very quick. Everything looked good. They can see the hole that they "poked" in the ventricle wall, as expected. Hopefully with the next MRIs they see the third ventricle wall with less pressure on it, and that will mean it is working.

Liam is feeling very good. Around noon, he said he had a bit of a headache and he had a nap. Now that we are home, we have to try to keep him to "quiet activity". He just keeps happily playing non stop! Besides the surgery site, you would never know he had surgery.

Liam is doing well

Yesterday was indeed a long day. Liam handled the fasting up to the surgery pretty well. He was quite emotional, but he was pretty nervous too.

Surgery started around 12:30. We got paged at 2:30ish. Liam woke up grumpy and irritated with the IV in his hand. The wonderful nurse found him a DVD player and Star Wars III, which he wasn't supposed to watch until he was older. Troy tried to distract Liam from the movie during the scary parts. Liam was very happy about the movie.

Liam had no pain or discomfort. He had no pain medications, just tylenol. Liam was a bit wobbly walking to the bathroom, but nothing abnormal.

Unfortunately, the hospital was jam packed and we had to wait in day surgery recovery for a looong time. It is not a comfortable place to hang out when Liam is feeling fine. They got Liam moved to a bed in unit 3 at 5:30.

Liam had an uneventful night and is feeling good this morning.

They will do a "quick head MRI" today to make sure everything looks good. (no anesthetic required) I'm not sure if they'll know if the surgery actually worked yet, it might be a long term monitoring thing to know if the csf is flowing better and the pressure on the 3rd ventricle is relieved. (there was 2 years of scans leading up to this surgery) I'll find out more from our wonderful team, Dr Hader and Kelly today.