Sunday May 31st, 2015 update from Saskia and Bill

To date, Natasha has had 8 treatments, with # 9 happening tomorrow.  Some have been good, some not.  More on that later.

First, a quick note about Bill’s Facebook page: Thanks to all the Friend requests, but please understand that Bill has a Facebook page only so that he can have admin access to Natasha’s page.  We both set time aside to view the comments on Natasha’s page, as well as the comments on this site.  The well wishes from around the world bring us strength.  Thanks for your continued postings!

Oh, and about posting on this website – We’ve heard from some that it’s not clear how to post here.  And Bill agrees!  He had to ask to find out how to see postings on this site.  The answer is to click on the title of the article.  Then within each article you can post a comment and see other comments.

Next, a huge thank you goes to our friends at the Fairmont Banff Springs Hotel for an absolutely fantastic weekend.  We each had a massage and enjoyed the spa and other hotel facilities.  The level of customer surface was phenomenal.  We felt truly special and completely pampered.  The change of scene from last week’s radiation treatments was most welcome.

And now, about the treatments.  On a positive note, the folks at the Tom Baker Cancer Centre have been very accommodating.  We are able to park close to the door, the wait time is minimal and the treatment time is pretty quick – about 15 minutes.  The staff there very much want the experience to be as pleasant as possible.  We are also grateful that we live only 20 minutes from the hospital.  We know that others have to travel long distances, some staying away from home, in order to get treatments.  How wonderful it is that we can be back in our home only minutes after each treatment – unless Natasha directs us to the nearest restaurant!

There has been a challenge though.  At our initial orientation to the facility, we were told that a minority of people report sensing odors during treatment.  As it turns out, Natasha is one of this minority.  The odor she smells is terribly unpleasant.  As we understand it, there isn’t actually anything that is giving off the smell, but it’s the radiation that is activating sensory nerves in her brain.  Be that as it may, perception is reality, and the reality for Natasha is that she must endure a terrible odor throughout the treatment, with it becoming progressively worse towards the end.  Saskia got Natasha some essential oils to put on a surgical mask, which is placed over her treatment mask. (You see, she wears a treatment mask, form fitted to her head, which is attached to the table during treatment.  This ensures that she is in the exact same position for each treatment, and remains in the exact same position throughout each treatment)  The oil helps but does not completely mask the foul odor that Natasha is experiencing.

Natasha was progressively more anxious before treatments last week.  On Wednesday the nurse provided some Ativan. On Thursday and Friday we gave her some as we left for the hospital.  It was breaking our hearts to see her level of anxiety, as well as having to medicate her to make the treatment doable.  We are hopeful that we can continue to find ways to make Natasha more comfortable and reduce her anxiety so that we can avoid medication like Ativan.

We are also looking at what else we can be doing to help Natasha be as healthy as possible.  We have been exploring nutritional and other approaches to treatment.  More to come on that in future posts.

We have also been realising many blessings.  A short list includes:

  • Our weekend in Banff

  • the excellent level of medical care available to us

  • the support of family, friends and strangers,

  • amazing connections with others around the world

  • Experiencing Liam and Natasha in this new reality – they have both given us reasons to be so proud.

The list goes on and on.  Thank you very much for your ongoing interest, support and prayers for Natasha!!

Wednesday May 20th, 2015 update form Saskia and Bill

Today Natasha starts her first radiation treatment. Natasha is feeling fairly optimistic about the process, please keep her in your thoughts and prayers today, thanks from our heart to yours.

We are asking for some help from our Calgary community. Most that hang out with us in the morning know there is usually a green smoothie blending up in our trusty vita-mix blender. Unfortunately Natasha has never warmed up to drinking green smoothies with us because she can't handle the texture. We are looking for a Juicer to experiment with. If you can recommend the best one out there and/or if someone has one that they are not regularly using we would hope to borrow it to see if it can work for Natasha. Natasha as you may have read in her last blog is on a quest to eat healthy. 

We as parents are on a quest to help her body heal from the radiation and build her up as strong as possible.

Thanks, Saskia and Bill

Friday May 15, 2015 Update form Bill and Saskia

Thanks for all your continued prayers and support. We have heard of many people (adults and kids) praying for and supporting Natasha in practical ways. From the bottom of our hearts thank you and please continue to pray and share with your circle of family and friends prayfornatasha.ca

On Wednesday May 20, 2015 Natasha will begin radiation treatments  5 days a week for 33 treatments. At first Natasha was very scared but she is now feeling more confident that she can handle the process.

Getting an orientation on how the radiation treatment  room works

Getting an orientation on how the radiation treatment  room works

Natasha saw her Oncologist at ACH this week and we are starting to taper off the Dexamethasone (helps reduce the inflammation in her brain but has weird side affects; increased appetite and mood swings)

The overall side affects Natasha has is weakness in her left arm and leg and seeing double. Seeing double has been the most frustrating for Natasha. We have tried different things to help her, such as having her wear an eye patch, alternating eye to eye.  Thankfully our friend and eye doctor has fitted Natasha with prism adhesive on a new pair of cool Ray band glasses. At first Natasha did not notice a positive difference but an hour into wearing them her brain adjusted and she can now look straight and not experience double vision.

Natasha working on a blog sporting her new glasses

Natasha working on a blog sporting her new glasses

The next job for us as parents is to research and review natural remedies to support Natasha and her body through the radiation treatments. We are grateful that her Oncologist is open to review these remedies we suggest.

Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding ; in all your ways submit to Him, and He will make you path straight

God Bless!

Saturday May 9...Update from Bill & Saskia

Yesterday, one week from the day we started this journey, we had a follow up meeting with Natasha’s Oncologist at Alberta Children’s Hospital.  During the 2.5 hour discussion, we wrestled with the question of whether or not to participate in clinical trials.  We were made aware of some of these trials through emails from friends and family (prayfornatasha@gmail.com).  It is no surprise that the Oncologist was familiar with such trials, and the people conducting them.  Professionals within the world of DIPG are well connected. We reviewed a number of trials, set aside the ones that were not applicable to Natasha’s specific condition, and discussed the few that were. 

It was not an easy discussion, and it was a thorough discussion.  With the guidance from the Oncologist, and the support of two dear friends who are doctors, we have decided that Natasha will remain in Calgary to begin radiation therapy.  Alberta Children’s Hospital and the Tom Baker Centre are highly regarded facilities.  We know that Natasha will be receiving the best care available. 

We continue to be in awe at the amount of people sending us messages of prayer, hope and support.  We are also constantly amazed by our children.  Natasha and Liam are quickly becoming shining examples for us to follow. 

We continue to focus on prayer: Faith, Hope and  Love. Faith in the things we cannot see. Hope that comes from God. Love conquers all!

Thursday May 7...Update from Bill & Saskia

Tomorrow will be 1 week since we learned that Natasha has this horrible brain tumour. So many things have happened since. We have received support and prayers from within our community, and way beyond. We have heard of prayer groups as far away as Africa, Europe, and throughout North America.

To be clear, we are praying that God will remove this brain tumour so that Natasha's story will be a miracle of God's grace and that she will live a long and healthy life serving the Lord. 

We are having our first consult at the Tom Baker Cancer Centre this afternoon.  We expect radiation treatment to start the week of May 18th , five days per week for 31 treatments. We are exploring every option in addition to radiation treatment.

Natasha is scared, but she also has a positive outlook. She is a writer at heart and is starting to tell her story in 'Natasha's Blog' on this site (www.prayfornatasha.ca). Please continue to share our prayer requests for Natasha with your circle. God is good and almighty.

We will do our best to keep you up to date on our journey.