Wednesday, June 26, 2013

Cancer is Not a Cold

I had no idea about childhood cancer before I was thrown into this world, so I understand when other people also don't know. Many people are under the impression that once Liam's treatment is done that we can put it all behind us. I suppose people have heard the statistic about pediatric cancer having 80% 5 year survival rate, which does sound good. Cancer is not like a cold. You don't just get over it and it is over.

I've previously listed the long list of side effects, long term effects/late effects that Liam will face from surgery, chemo and radiation. Medical conditions for kids surviving cancer are certain and very real, we can only hope they are less. Liam has troubles with motor skills, he may never ride a bike due to balance issues, he may always be smaller in size (currently 3rd percentile), these are all minor. It's the heart, kidney, hearing, secondary cancers and other issues that are the most scary.

Unfortunately, Liam is already facing his first issue, hydrocephalus. Scar tissue is causing blockage of the normal CSF flow in Liam's brain, possibly from the surgeries. Do we intervene with surgery now, to prevent further hydrocephalus? Do we wait until Liam presents symptoms? Is the hydrocephalus causing Liam brain damage right now? Possibly, there is no way to know. Shortly after Liam's 5th birthday, he may have to go in for more surgery (brain surgery #3) to his brain to fix the hydrocephalus.

You might ask how long Liam's life will be compared to an average person. Consider this - there are no statistics because so few people with Medulloblastoma have lived into their 30s yet. Out of the children who were diagnosed with Medulloblastoma 30 years or more ago, many/most of them are no longer with us. Medulloblastoma is a very aggressive form of cancer, which they had troubles diagnosing early enough 30 years ago. Thankfully, MRIs can tell us much more about the disease now.

Chemotherapy and radiation have killed the cancer in Liam's body... but:
- One of Liam's chemotherapy drugs has a possible side effect of Leukemia.
- Radiation causes cancer and Liam had 30 days of radiation, not to mention I can't count how many CT scans and x-rays.

Any child (or any person for that matter) who is impacted by cancer is never "just over it" when the scans are clear. Every 3 months, when Liam gets his MRI and lumbar puncture, then there are 2 ways the results can lead, overjoy or devastation. 3 months is a short time to go through the emotions of waiting for the MRI and recovering from the stress of going through it. I am most thankful that Liam does not have the same stress about it as us. We don't know how much stress the anesthetic and tests cause him, but we can hope that we are carrying most of the stress.

The other factor that is always weighing on us, what are the chances of relapse? We don't know, perhaps 30% chance. The most relapses happen in the time frame of the next couple of MRIs. If we can make it 2 years out, we can breathe a little easier. With cancer in general, 5 years is much better. Unfortunately, Liam doesn't fall in the best case statistic of 80% survival, because he wasn't average risk. What happens if he relapses? Let's just say the doctors won't give us a survival rate on it, because it's not good.

I can't even say how grateful I am that Liam is doing so wonderful, despite what he's gone through. He has definitely beat a lot of odds already. I just find the more people I speak to, that many people don't understand the impact of cancer when treatment is over. I really appreciate when people ask questions, please don't hesitate to ask.

Tuesday, June 18, 2013


It felt like a big event... we returned the feeding pump! This is the backpack that held the feeding pump that we used with Liam's NG (nasogastric) tube - the tube that went into Liam's nose to his stomach. The pump is inside the backpack, the backpack allowed Liam to be mobile while being fed the formula. No one is sad to give this away, and none of us want to get another NG tube put in. Liam had not gained any weight yet, but his eating is slowly getting better.

Liam has had weekly OT to practice printing and scissor skills, his last weekly appointment is next week. He has come along so well, he cuts out shapes with ease now. What we've learned through these sessions is that Liam may need extra one on one help in Kindergarten with new tasks. But, Liam has shown us that he is very capable of learning and improving. Liam has worked with 2 OT students now, they've both been really great with Liam.

Liam did wonderful at speech and physio today. Physio/speech are now about every 6 weeks, it has been wonderful to see improvements with every appointment (i.e. walking stairs, jumping, balancing, overall coordination). He was very apprehensive, but he tried the climbing wall! I'm so proud of him!!

I am so very grateful for the group of therapists, they have been so great to us the last year and Liam absolutely loves them.

Wednesday, June 5, 2013

Eating, OT & Immunity

The good news is there is not much to update these days, everything is going well. Liam improves in so many ways almost weekly. I think that he is making up for the 6 months he was getting chemo it felt like he was stalled from growing and developing during chemo.

Recently, on a rainy day, we went to the mall and for the first time Liam walked through the mall instead of riding in the stroller! We always bring the single stroller to the mall, Liam rides and Madison walks. But of course, she's a BIG girl and big girls walk. Liam still gets tired really easy, so it was a big surprise to me when he was willing to walk.

Even with fatigue, Liam is having fun in U5 soccer. He has balance issues, but is doing so well running and kicking the ball. We just can't get him to try to get the ball away from other kids :-).

Eating is always a challenge, but he has set some records with recently. Liam ate 7 McDonald's chicken nuggets and a few fries at one meal, this was a huge meal for him. Although, he may not have eaten the rest of the day... baby steps. We try to remind ourselves that he vomited for almost a year, we can't expect him to love food yet. He hasn't gained weight yet, unfortunately now he's in the 3rd percentile.

The occupational therapist got another student, meaning extra OT sessions for Liam. Liam has weekly appointments for OT, and goes every 6 weeks for physio and speech therapy. It is interesting watching the OT sessions, where they are working on pencil and scissor skills. The area he struggles with is with getting his fingers/hands to do what he wants them to. It takes a lot of time for him, he requires a lot of repetition and practice. He is still unable to put the pencil correctly in his hand, but Liam has mastered the scissors and uses them like a pro. I can't believe how many creative ways OT has to get Liam to spell his name over and over!

To get Liam to practice, we made some name tags. Even though he struggles putting the marker in his hand, once I help him get into place, he is doing really well at printing his name.

I know I've mentioned several times, but it is hard to believe a year ago Liam had troubles standing without falling. He had ataxia, which caused his hands to randomly shake, this is gone now. I am so thankful Liam has come this far in a year and to be working on printing and scissor skills is pretty amazing.

It seems as though Liam's immunity is working well, he was last neutropenic end of October. We don't get Liam's blood counts done regularly anymore, so we don't know where his counts are exactly. Liam is getting the same colds as the rest of the family and fighting them away like the rest of. I still worry about Kindergarten and the number of illnesses that just normally go through the schools... but at least he's getting a chance to build up his immunity now.

Liam still wants to be a race car driver when he grows up and now he has the suit to practice!

Monday, June 3, 2013

Survivor Day

Thanks again to Kids Cancer Care for the fun day out at Camp Kindle. It was a rainy day, but no one there minded. They even made use of the dunk tank!

 Liam got his face painted to look like a pirate, he looked pretty awesome.

Liam loved playing with Roary the mascot for Children's Wish Foundation!  

Volunteers for summer camp were there as well, you could tell there was excitement in the air. I am amazed at how many kids I have met that attended camp for many years and now are volunteering there. It's wonderful to see the stories and meet so many wonderful people.

Sunday, June 2, 2013

National Cancer Survivors Day


We are attending a Survivor Day at Camp Kindle, held by Kids Cancer Care Foundation. Bouncy castles, face painting, a magician, sounds perfect!