Wendy’s journey with Victoria
Latest update ..... 17th July 2019
And there it is, MRI #26 done. The tumour remains stable, and the oncologist has advised that no more rountine scans are required. Thank you Jesus. This part of the journey is over. No more scan-anxiety. No more anxious waiting to see what the results will be. Eight and a half years on, it is going to take a little while for this new reality to sink in.
In the weeks leading up to this scan, which we knew from last year was most likely going to be the last scan, Victoria was asking some tricky questions like, 'What happens if the tumour grows again, how will we know without having the regular scans?'
Big questions for anyone, especially an 11 year old. Questions of fear. Questions that we don't have a definitive answer for. But questions that bring us back to some fundamental life questions, Who do I trust? Who do I choose to put my faith in?
Proverbs 3:5-6 answers those questions. It tells us who to trust, and has been one of the guiding scriptures of this journey ...
Trust in the LORD with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths.
Lean not on your own understanding ... a laying down of what we know, what we think, and trusting that God has got this, and His plans are always good. In this photo Victoria is wearing her 'School Sport Australia Championships' hoodie - her favourite item of clothing. Who would have thought eight and half years ago when she was having brain surgery, and then having to learn how to use her left arm and hand again, that she would compete at the national schools athletics competition... Lean not on your own understanding.
In all your ways acknowledge Him ... throughout this journey among the fear, uncertainty, disappointment and confusion, we have endeavoured to acknowledge Jesus. There has been a knowing that we needed something/someone outside of ourselves, above and beyond of the wonderful medical care we received and the overwhelming support of family, friends, our church and school communities. The only person that can give the peace that enables you to sleep well at night - Jesus.
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Philippians 4:6-7 NKJV
This is not to say that we have not experienced emotional ups and downs. We most certainly have. Last week on the morning of the scan I was surprised by the depth of emotion that welled up in me. Not fear, but another layer of grief for a childhood that has not been carefree. If you want to read more, here is the link to the blogpost - Unexpected tears These emotional ups and downs continue to take us back to that choice - Trust in Jesus.
And He shall direct your paths ... sometimes that path is long, so much longer than you imagined it would be. A path that requires patience, endurance, strength and grace. But thankfully we don't walk on that path alone, Jesus is with us, along with people who know how to love, support and pray. Thank you for being those people.
For me, one of the unexpected paths has been writing a book about the first three years of this journey. Recently the Newcastle Herald wrote an article about the book How Wendy Robinson came to write the book on childhood cancer This has been one of another one of those 'lean not on your own understanding' experiences. Just writing through the tears, trusting that God has a plan for this book, my job was simply to get the words on the pages.
Victoria Grace - living with victory through childhood cancer is currently available at Koorong and Book Depository. The audio book is now available on Christian Audio. In the next month or so I will be embarking on some marketing for this book, so would really appreciate your prayers for God to open the doors so this book will get to the people who need it. Thank you.
And so life goes on. We are thankful for where our family is today. The transition from living 'day-to-day in uncertainty' to a life of 'future focused conversations and actions around dreams and goals' is well underway for all members of our family. I am so grateful to God, and the truth that He does not leave us nor forsake us, Deuteronomy 31:6.
Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you. He will not leave you nor forsake you.
Thank you again for all the prayers, love and support over the past 8.5 years. We are so grateful for all that we have received. My prayer is that my sharing of our journey and God's faithfulness has encouraged you to seek out more about the Jesus, the one who says ...
I have come that they may have life and have it more abundantly. John 10:10
Update ..... 26th November 2018
So it's been a while since I've posted, but now seems like an appropriate time. Praise God we are definitely in a new season. Victoria and I are currently at the School Sports Australia Track and Field Exchange (ie schools national athletics championships) in Melbourne. Victoria has won a bronze medal for the 11 year old girls multi-class discus. As you can see in these photos she is a very excited girl!
What a journey to get here! There are many people who have helped Victoria get to this place, starting 8 years ago with all the John Hunter Children's Hospital therapists that helped her after she had a stroke during the brain surgery. We are so grateful for the time and care they put into her rehabilitation, along with many other friends and family who came to our home and helped out with blocks of intensive OT and Physio.
Since starting school at Belmont Christian College in 2012 (the year in which we found out the tumour was growing again and Victoria had to start 15 months of weekly chemo), she has been surrounded by teachers and students that have prayed for her and supported her on the 'off days'. We are grateful for her sports teacher, Mr Robins who has continually encourage her in her sporting endeavours since kindergarten. In Victoria's words, he has always challenged her to try new things in sport, taught her how to set goals and keeps reminding her not to give up.
When we found out that Victoria had qualified at the State competition for the nationals Mr Robins arranged for Victoria to have some more technical coaching from a national age discus champion - Ash Blackstock (and her mum Emily), which was invaluable. And there was plenty of laughing too.
I can't post any of my videos from the events in Melbourne, however click here to see a video of Victoria training, practicing the tips she learnt from Ash and Emily.
We are also extremely grateful for the help of the physios and the OT that regularly work with her to ensure her muscles are doing the right things.
And of course we know that as well as all the hard work, the power of prayer is essential and we are grateful for those who pray for Victoria and those who continue to provide encouragement verbally, in messages and practically. God is building a great team around her. Thank you for coming on this journey with us - the best is yet to come.
After winning the bronze medal, and we were walking to our seats, Victoria asked me, "Are you proud of me mum?" I'm pretty sure I had said that to her at least three times, but obviously she needed to hear it again, so I said,
"Yes, I am proud of you for winning a medal, but there are also at least 6 other things I am proud of you for ...
the hard work you have put in over the years to keep your body functioning;
overcoming the fall down the stadium stairs when you hit your head on the concrete this morning;
getting through the classification process without falling apart;
not giving up when you kept throwing fouls today;
being a friend to other competitors that don't find it easy to make friends;
continually relying on God to get you through each challenge you face.
Yes I am very proud of you."
On Sunday Victoria also competed in the 11yr girls multi-class relay, for the ACT/NSW team, as the first runner. She was a little bit nervous as she had never run a relay race competitively before (they only do it at this level for multi-class). Here she is on the tram on the way to stadium trying to settle the nerves.
Again I can't post my video of the relay, but her team came fourth. When Victoria came off the track, the first thing she said to me was, 'I want to do it again!'
Unfortunately we cannot all be here to support Victoria at the this competition, but Ken and my Mum and Dad are doing a great job at home, keeping things going. Marshall, Charlotte and Alexandra are often ringing with messages of support.
The experience of coming to this competition has been wonderful for Victoria, not only from a sporting perspective, but also from a personal perspective. The NSW team has about 150 children in it, of which about 42 are multi-class children, so in this environment she is not 'different' but she is part of a large team of children who have all overcome so much physically and mentally to compete in these track and field events. The value of experience cannot be underestimated. So thank you again to everyone who over the years has helped make this possible.
And we are ever thankful to our God who has never left us or forsaken us throughout these year. He has carried us many many times, and always provided what was needed. He is faithful.
Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us. Romans 8:37
And now an update on my book ... I've had a couple of copies printed to check out the layout etc before doing a larger print run ....
There are a couple of minor things that need to change and then it is complete! What a journey this project has been too.
My prayer is that this book will be a blessing to many people, not just those people who find themselves on a similar journey to us, but to anyone who is in a situation where they have no options other than to trust God - and the challenge that presents as we fluctuate from belief to unbelief and back to belief.
As I was asking God what to put in this post about the book He reminded me about the dedication page in the book ...
Just in case you can't read it in the image, it says ...
This book is dedicated to our daughter, Victoria Grace, without whom there would have been no story to write. I love you Victoria. Thank you for showing me how to live in victory despite my circumstances.
As I re-read the dedication I realised that once again over these past few weeks Victoria has shown me how to 'live in victory despite my circumstances.'
In the past couple of weeks Victoria has had some appointments that have negatively impacted her emotionally - lots of anger and tears. Then as I mentioned briefly above, here in Melbourne on the Saturday morning just before she was to go to the classification appointment she fell down the steps in the stadium and hit her head.
After being checked out by the first aid people, she slowly and carefully made her way to the classification appointment (which has previously been an experience that also resulted in a lot of negative emotion as her level of physical disability is assessed - it is a bit 'in your face'). Thankfully the classifiers were very child friendly, and there was no emotional outfall.
Then it was time for the discus competition, she was a little shakey on her feet, and after throwing a couple of fouls she looked to me standing at the fence and indicated for me to pray (as if I wasn't already praying!!!!). She knows Who gives strength in moments like these. She didn't give up, kept focused and eventually won the bronze medal.
So despite the years of heartache, pain, disappointment, fear and emotional depletion, I can see God's hand on her life, and our entire family's lives as the years go on and His purpose unfolds. And I am grateful that He has carried us through, continually building a deeper level of trust in Him - learning how to live in victory despite the circumstanced - In Jesus Name.
So if you are local and interested in purchasing a print copy of my book I am selling them (cash only) for $25 (incl GST) each, or $20 (incl GST) each if you order two or more - perhaps you might like to give one as a gift to someone who is going through a similar journey to us (there is lots of practical information in it too) or to anyone who is needing hope and inspiration to just keep going.
If you are not local, I will very soon have my website ready to accept online orders and payments. I'll let you know when this is ready, along with the availability of ebook and audio book.
Initially the profits will cover the outstanding production costs, and then a portion of the profits will go to the charities that have helped us over the years.
For anyone interested, the book covers the first three years of this journey. The table of contents is listed below ...
Table of Contents
Chapter 1 The Diagnosis
Reflection – The importance of a shared faith when the going gets tough
Chapter 2 Family, Fun and Fear
Reflection – Distractions – there is a battle going on
Chapter 3 Post Op Recovery
Hospital and waiting days
Reflection – The Holy Spirit – our Comforter
Chapter 4 Home and Rehabilitation
Emails 8 Feb to 3 Mar 2011
Reflection – Rehab – Conquering and creativity
Chapter 5 More Therapy
Emails 14 Mar to 18 May 2011
Reflection – Creativity in therapy
Chapter 6 New Things and Events
Emails 16 Jun 2011 to 30 Jan 2012
Reflection – Camp Quality meets our needs
Chapter 7 The News We Didn’t Want
Emails 22 Feb to 18 Jun 2012
Reflection – Dealing with disappointment
Chapter 8 Chemotherapy
Emails 19 Jun to 22 Jul 2012
Reflection – The Carer needs to be cared for
Chapter 9 Wonderful Support
Emails 1 Aug to 14 Sep 2012
Reflection – Community, giving and receiving
Chapter 10 Scans and A Big Scare
Emails 1 Oct to 16 Nov 2012
Reflection – Plan B preparing for the crisis
Chapter 11 The Silly Season
Emails 26 Nov to 28 Dec 2012
Reflection – Mothers
Chapter 12 New Year and a Blog
Emails 6 Jan to 24 Jan 2013
Reflection – Writing as therapy
Chapter 13 School and Another MRI
Blog posts 31 Jan to 15 Feb 2013
Reflection – Fathers
Chapter 14 Normal Life
Blog posts 19 Feb to 29 Mar 2013
Reflection – Siblings are a blessing
Chapter 15 Living From Scan to Scan
Blog posts 9 April to 21 May 2013
Reflection – Thankfulness is key
Chapter 16 High Temperatures and Hospital Again
Blog posts 29 May to 5 Jul 2013
Reflection – Practical tips for the home of a child on chemo
Chapter 17 Precious Family Time
Blog posts 12 Jul to 26 Jul 2013
Reflection – The Bible
Chapter 18 The Wish
Blog posts 3 Aug to 9 Aug 2013
Reflection – Charities
Chapter 19 Reality Hits Fast
Blog posts 11 Aug to 19 Sep 2013
Reflections – Keeping the left leg working
Chapter 20 Living from a Place of Victory
Blog posts 27 Sept to 29 Oct 2013
Final Reflection – Three years of learning
About Wendy Robinson
Appendix A Scriptures
Appendix B Victoria’s Medical Diagnoses
Appendix C Occupational Therapy Activities
Appendix D One Hour Occupational Therapy Plan
Appendix E Master List of Lists
Appendix F Emergency Hospital Bag Contents Checklist
Appendix G Homecoming Checklist
Appendix H School Booklet
Appendix I Signs for Displaying at Home
Appendix J Home Medical Kit
Appendix K Charities that have helped our family
Appendix L Maintaining and Improving Leg Function
My sense is that there is a second book to write, and the story is only just beginning!
Anyway, that is more than enough information for now! Thank you so much for staying the distance with us. Please continue to pray for Victoria as she approaches the teenage years and the challenges they can bring. I am going to finish this long post (sorry that it is so long - but there was so much good news to share!) with one of my favourite scriptures ...
But me, I'm not giving up. I'm sticking around to see what GOD will do. I'm waiting for God to make things right. I'm counting on God to listen to me. Micah 7:7 The Message
I pray that God will bless you and your family and give you the strength to overcome and live in victory, In Jesus Name, Amen.