Bryn's Book of AWESOME - A Brain Tumour Journey

My oldest son is a non-malignant brain tumour survivour.  

The tumour was found and removed all on one day  nearly 3 years ago.  He was 6 at the time.  

Now he is a healthy nearly-nine-year-old.  

I took many pictures throughout Bryn's journey in hopes that one day I would be able to put together a book of memories for him.  Because he was so young, he couldn't really understand the scope of his health issues and I knew, eventually, he would have many questions about what he had been through.

Hopefully this book of "Awesome" will shed some light on his story and help him understand.  

I have worked on it for almost 6 months, journalling the events of his diagnosis, surgery and recovery.

To help tell the story, I have gathered photos and memorabilia.

As well, I have used a line of scrapbook papers from Simple Stories called "Awesome." Perfect, I thought!

I've inserted some excerpts from my journalling to go with these pictures of the finished book.

"Kevin had spoken to the emergency pediatric doctor, and he let Kevin know that Bryn would have an MRI sometime after 4pm.  All we could really do was wait. Both of us were thinking horrible thoughts, but never really spoke of it.  I guess deep down we were preparing for the worst and hoping for the best."

Bryn gets an IV inserted and has his first MRI

"Kevin and I kept our brave faces on as we hugged and kissed our son.  We reminded him we would be RIGHT THERE when he woke up and we would do anything to help him get better after his surgery.  

“ I think I want a purple popsicle, Mommy.  Don’t forget.” 

And with one more kiss on each cheek, they rolled our boy away.

We prayed to God that this wasn’t the last time we would kiss our little boy’s warm little cheek. " 

Bryn is rolled into his 7 hour surgery and we say our "See You Laters"

"Oh Bryn.  You are so brave."

" And your lump - it's gone!"

"Do you hurt?"

"Mommy and Daddy are here."

"My head hurts."

"So does my throat. Can I have some water?"

"Where is my popsicle?"

"I'm really tired.  Sleep."

Bryn post-surgery covered in monitors and tubes

"Kevin left to grab us some breakfast and it hit me - how are we going to get through this?  A nurse named Katrin put her arm around me and asked how I was.  I guess the look on my face gave it all away.  We have this darling boy, straight out of surgery, with weeks of recovery ahead.  But we also have 2 other kids, jobs, a home - how will we ever get through this?  Katrin simply said, "You have to and you will!"  From what she had seen already, she knew that Bryn had a wonderful "team" for parents and anyone could see that this family was going to be all right.  It was at that moment I knew what my job was - to keep strong, keep smiling and press on, no matter how hard things seemed to be.  After all, nothing we were dealing with would ever be as horrible as the possibility of losing our first-born boy."

This is a photo of Bryn's 7-inch incision, stitched up with numerous stitches.  I covered it with love because the sight of it would make many of you quite queasy!

"Bryn's CT scan came back clear. There was no swelling of the meninges. However, the pediatric doctor recommended he stay for several days for strong anti-biotics and further monitoring.  Alright.  Time to get the hospital game face on again.  How many days?  We were told that it would take a few days for the blood testing to be completed so at least til then.  Maybe Monday if the infection passed.  Okay – 4 days over the weekend.  We can do this....."

After a few days at home, Bryn is re-admitted with possible meningitis.  He spends 4 more days in the hospital and the infection turns out to be only an ear infection!

"Within minutes, Dr. Izaza confirmed the diagnosis.  Bryn was blind in his left eye.  The optic nerves were damaged and there was nothing we could do.    Instead her recommendation was simply “protect the other eye!”  Glasses with safety lenses would keep his sighted eye safer from everyday issues.  She let us know that she would send us to another specialist whose expertise was in optic nerves in hopes that he might be able to figure out the cause of Bryn’s vision loss.  We hoped he would be able to give us some idea about possible surgeries or therapies that could help our son.  After all, he had been through enough!!"

Bryn is found to be blind in his left eye as a result of the tumour. We see a slew more specialists to find out whether the loss could be corrected.

Luckily, Bryn's  MRIs have been clear since the removal of his tumour.  We still spend lots of time at his hospital seeing a variety of specialists and Bryn handles all of these necessary tests and assessments wonderfully.  

At the back of the book, I included  three plastic pockets that hold bits and pieces from his hospital stays and events that we attend that are run by the Brain Tumour Foundation of Canada.  

When I completed the book this past weekend, my husband asked if it was REALLY finished.

I suppose that Bryn's story could continue.

After all, he will be on "tumour watch" for the rest of his life.

Really, we can't know the future of Bryn's brain, but our hope is that these hospital stays are a thing of the past. 

Hopefully Bryn can look back at this time in his life and know that he can meet and beat any challenge set before him.

He has the strength and courage to get through anything!

He is truly AWESOME!!