Thursday, April 30, 2015

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.