Tuesday, March 3, 2015

Everolimus/Afinitor Trial.....the Verdict

After much research, discussion and heartache we have decided NOT to enroll Rhett in the Clinical Trial.

Afinitor is a chemo drug. Has been used for years in the treatment of Oncology. Do I really want to risk Rhett's immunity? The suppressed immune system, the mouth sores, the slow healing, the risk of respiratory infection, etc etc are all side effects that I do not want Rhett to experience if he doesn't have to.

The next challenge is that Novartis does not provide any travel allowance for Rhett. This trial would require us to be in Vancouver weekly for 12 weeks. We live a province away. Logistically that is difficult. The effect this would have financially, time wise, and on our other child is huge.

Couple these two topics with the fact that it is a double blind study.....well, it wouldn't be beneficial to Rhett.

These decisions were very hard to come to terms with but now that we've made it, I am ok with our choice. Sometimes I just need to listen to my inner voice, or the Higher Power that is putting road blocks in my way. Yes with great effort I could work out the financial and travel concerns, but at what cost to my family. At what cost to Rhett? The fact that there were so many road blocks and concerns tells me that this Trial is not meant to be for Rhett. Sometimes, I need to just tune in and be grateful for what we have.

Having said all that, the TSC treatments Rhett is currently undergoing will remain as the status quo.

Tuesday, February 10, 2015

Uncertainty & Hope

Tuberous Sclerosis touches are lives even when Rhett is doing well.
We are awaiting a NeuroPsychology assessment. It'll be a long day for Rhett.
"A watched pot never boils" well, a watched email account never receives either.  I'm anxiously hoping an email from our neurologist will appear in regards to a Clinical Trial.

So many questions! So little patience!!!

Stay tuned....

Wednesday, January 7, 2015

Here I Am...

The children are downstairs quietly playing, dinner is in the oven, the "News" is on TV (I rarely watch as it is so negative. More politics? Ok. Less murder and mayhem.)

These days our life consists of homeschooling, living in the woods, solo parenting and working hundreds of kilometres away from home (Brad) and all that goes with these events.

Healthwise....the boys are doing well. All things considered. Due to the TSC, Rhett will always be under our watchful eye and consequently there are tests and results and therapies and delays and strategies and struggles. Life with "The Maybe Disease" as Brad and I call it.

Warner continues to shock and amaze us with his brilliance, interests, literal views, and struggles. There's always a struggle with any child however, Warner's have declined. Age? Therapy? Meds? Who knows. A combination of the three? Probably, whichever, I am grateful.

Life is a blessing and a trial. The trial area is in my head. I know that. However, it's still real. Loneliness, purpose and frustration are always close to the surface for me. So....the flavor of this blog will change as compared to before as the boys are older, stable, and I am in a different season, per say.

Follow along and comment, if you will.

Best wishes,


Wednesday, March 19, 2014

Epilepsy Questions

Recently, I posted on my Facebook page for my friends to ask any question about seizures or epilepsy...."no holds barred". I was surprised at what some people were wondering about. A great group of questions that I would never have considered!

Soon the answers...my perspective....will be shared. Until then, here's a look at the questions.

  • What memory does a person have of going through a seizure?
  • What are the physical side effects from these?
  •  Is it painful?
  •  What is it doing to the brain each time it happens?
  •  What is it doing to the brain each time it happens?
  •  How long do they last and does the person know they are having one

  •  What is the best course of action an observer can take to support the person enduring a seizure?
     Does the condition often either lessen or magnify into adulthood? which is more common to happen?

    Will it ever lessen?
    What are the long term effects of the medication? or the seizures should medication not be taken?

  • If a person is known to have seizures, at what point would you still need to call for medical help?

Now, the answers will be based on my experience through Rhett and knowledge from our Neuro team and Epilepsy Calgary. I'm not saying I'm an expert by any means but I do have some knowledge to share. Hopefully it's helpful. 

Saturday, March 1, 2014

March is Purplicious

Purple Day is March 26th. Started by the innovative & adorable Cassidy.
This year we will be doing our part to "Be Like Jelly & Spread Awareness" by posting interviews of others affected by Epilepsy aaaaand sending Purple gifts to friends. 

Want to join in? Either for an interview or a purple gift or both? 
Send me your email! 

Thursday, February 6, 2014


My dear friend has been transferred to ICU today. Hopefully this will be a place of healing for him as he will receive one to one care there.
Say a little prayer for Mr. B, won't you?
He needs special mending.

Wednesday, February 5, 2014

Hospital Visits

It's the annual Radioathon for the Alberta Children's Hospital Foundation. Listening to families' experiences is heart wrenching. Even more so because we have been there, been THAT family in need & staying in the ICU & on Unit 3. We are THAT family whose kids live to visit the hospital. It's old home week for us when we visit or have appointments.

Despite our previous hospital stays and needs, we are blessed beyond belief. Rhett & Warner are both   In good health & we aren't in need of hospital stays.

Today I visited a dear friend in the Foothilks Hospital and was again reminded of how fantastic the Children's is. The FHC is old, with skinny hallways & no storage, low ceilings & does not feel like a place of healing.  Again, we are so blessed.

Again, my heart tore a bit to see a friend hurting in that hospital room. So if you have spare prayer to send out, say one for my friend "B". He could really use it.