Update ... 7 May 2023
So we are coming up to the 6 month mark post surgery. Victoria is continuing to recover well.
Physically she continues to gain strength, now consistently swimming faster than she was pre-surgery. And with a new AFO (shout out to NeuroMuscular Orthotics) she can now run more efficiently. She experiences double-vision most of the time, although now has short periods without the glasses, so that side of recovery is moving in the right direction (6 -12 months was the suggested recovery period for her eyesight). Physical fatigue is still a major factor, often requiring a few 3 hrs naps each week.
The bottom line is we have so much to be grateful for as we witness each of our children press on despite the challenges we have faced as a family. We watch them all running the race of life, sometimes strongly with exceptional form, sometimes with determination to just take that next step no matter the pain. We watch them and we are grateful that they are each moving forward. We are grateful for God’s grace in each of their lives, and our lives too.
In 2 Corinthians 12:8-10 the Apostle Paul says, “Three times I pleaded with the Lord to relieve me of this. But he answered me, “My grace is always more than enough for you, and my power finds its full expression through your weakness.” So I will celebrate my weaknesses, for when I’m weak I sense more deeply the mighty power of Christ living in me. So I’m not defeated by my weakness, but delighted! For when I feel my weakness and endure mistreatment - when I’m surrounded with troubles on every side and face persecution because of my love for Christ - I am made yet stronger. For my weakness becomes a portal to God’s power." The Passion Translation
God’s grace. Our weakness. His power. All glory to Him.
Thank you again for your prayers and support. Victoria will have an MRI in June/July so will post another update then.
Update ... 26 Jan 2023
An update: Victoria recently had an MRI and praise God there has been no change to the residual tumour! She is continuing to gain strength, primarily due to the hours and hours she spends in her happy place - the pool. The left arm and hand strength is improving - Victoria can now pick up small things with her left hand, hold her favourite handbag and do up zippers! The eyesight is taking a little longer to improve and so Victoria has some glasses in the interim. The glasses have given her confidence when moving around. We have been told 6-12 months for the eyesight to fully resolve, but are praying for a quicker resolution.
Emotionally there continues to be a lot to process for Victoria and our family, but we continue to trust that God's grace is sufficient for each day, and that indeed He is doing a new thing. Here is the scripture God gave us for 2023 ....
"Set your gaze on the path before you. With fixed purpose, looking straight ahead, ignore life's distractions. Watch where you're going! Stick to the path of truth. And the road will be safe and smooth before you. Don't allow yourself to be sidetracked for even a moment Or take the detour that leads to darkness." Proverbs 4:25-27 The Passion Translation
When thinking on that first sentence, 'Set your gaze on the path BEFORE you' I felt that there was something I had to do to this year, to help me keep my focus on the future. We had twenty-five physical copies of Victoria's MRI scans stored in our bedroom - collected over the past 12 years and definitely collecting dust. Well they are now in the pile to go to the recycling centre. A physical declaration of letting go, and choosing to look straight ahead. And no doubt it will be another year of walking closely with God, drawing on His strength to 'Ignore life's distractions'! This whole journey has been a testimony of His faithfulness and love, walking with us through some dark times and (still) bringing beauty from ashes. My prayer is that you too can 'Set your gaze on the path before you. With fixed purpose, looking straight ahead, ignore life distractions,' always depending on the strength, love and grace of Jesus Christ.
Thank you for praying for Victoria and our family. We are so grateful for your prayers and support.
Update ... 13 Dec 2022
Three weeks ago my sister and I were in the hospital room with Victoria. She was on fentanyl for the pain after brain surgery. The room was dark - because Victoria was very sensitive to light. The room was silent - because she was sensitive to noise. My sister and I had to text each other until she went to sleep - even the tiniest noise was unbearable for Victoria.
During one of those sleeping periods I whispered to my sister, "I'm going to enter Victoria for the 50m backstroke in the NSW Senior State Age in two weeks' time - 50m -one lap so no tumble turns; backstroke - no diving; no side to side head movements; and we will just see how she goes - at least she will have the option to compete if she wants to."
Given what we were experiencing in the hospital room that day my sister thought I was just a little crazy!
And this is what we saw today ....
Victoria came 5th in her age group - 15/16yrs.
So grateful to God and everyone who made this possible from medical professionals, to swimming coaches/friends, family, church family and school staff/friends that have supported Victoria - encouraging her to just keep going!
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 your paths straight.
Update ... 5 Dec 2022
Back in the pool. 16 days after major brain surgery. Thank you Jesus.
Update ... 2 Dec 2022
We have so much to be grateful for. Here are some of the Praise points
1. The pathology of the tumour has not changed - this is a good result. We do not want it morphing into something more sinister.
2. The majority of the tumour is gone - probably less than 5% left in her brain!
3. Victoria has been getting stronger with walking and stairs - moving about more unaided each day.
4. After the surgery Victoria has been able to move her left foot and toes slightly. She hasn’t been able to move her left foot and toes for at least two years.
5. Victoria has gone to school most days this week for one or two periods - albeit in a wheelchair - but she has made it. So grateful for the teachers aide pushing her around.
6. Twice this week she has been up at 4.30am and gone to the pool to see her coaches and friends at training.
7. Today she received the okay to get back in the pool on Monday morning and continue training for the NSW Senior State Age competition in mid Dec.
We have three main prayer points:
1. Vision in right eye to return to normal
2. Left hand movement and stength to return - have commenced rehab - starting with playing Connect Four at the pool this morning.
3. No infections from swimming
Thank you again for supporting us on this journey. - through prayer, encouragement and in so many practical ways! It feels as though we are still coming to terms with the success of this surgery and how well Victorias recovery is going.
I’ll finish up with some words from Jesus Christ - the giver of life - in Him we trust.
The thief comes only to steal, kill and destroy; I have come that they may have life, and have it to full. John 10:10
And to that we say AMEN!!!
Update ... 27 Nov 2022 - 12noon
Victoria came home this morning.
Yesterday she showed the Physio that she could safely walk up and down the stairs. And this morning the last necessary criteria for being discharged happened - the poo!
Her walking is improving each day and now she is home we can get more focussed on the rehab for her left arm and hand.
We really can’t express our gratefulness for everyone who has prayed and supported us over this past month and particularly these last 10 days. Thank you so much.
We are so thankful for all the medical staff who have been involved in Victoria's care - for their skill and expertise and the care they showed to a 15 year old girl whose life had been turned upside down again!
And we are once again in awe of our God who provided a surgeon willing to do the surgery and that Victoria has come out of it so well and is home with us.
This morning as we were waiting for that last ‘action’ I was listening to ‘This is the Day’ by CityAlight. It is a song I have often listened to over the past 10 days - reminding myself that we have a Heavenly Father who loves us and has a plan for each one.
Thanks again for all the love and support.
I will post an update at the end of the week after we get the results of the pathology of the tumour.
Psalm 23:6 - Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever.
Update ... 23 Nov 2022 - 7pm
Day 4 since surgery and Victoria is progressing slowly, and we are thankful for every small step. Today she ate for the first time (jaw pain due to they surgery); walked 30 steps aided (an improvement on 10 steps yesterday); had the strength and desire to have a seated shower; and can now hold her own ice-packs (fondly known as chickens). And another step forward - the final line was removed today so Victoria can now move around with no attachments!
Pain continues to be take the focus most days, with the pain management being reviewed daily. We would appreciate prayers for this pain to subside as it is limiting the physical rehab that she can do.
Thank you again for those who have been praying and providing encouragement and practical support to our family. It is all making such a difference to our family.
We will continue to trust that God is working in the unseen - He is definitely working on us in the growing patience and self-control areas (not quite so unseen!) - and that Victoria will soon return to her fun-loving active self.
Proverbs 3:5-6 - Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight.
Update ... 20th Nov 2022 - 5pm
Thank you to everyone who has continued to pray for Victoria today. She has been feeling the effects of the surgery today with pain and swelling, which should both subside in a couple of days. She is still in ICU but will be back in the ward very soon.
Victoria had an MRI today and it shows that the surgeon has decompressed the cyst and removed most of the tumour. This is a wonderful wonderful outcome. We are so grateful to God and the medical team for this result.
Some of the tumour has been sent away for pathology, and the results should be back in the coming weeks or so.
Impacts on the left side weakness and left field vision will become clearer over the coming weeks.
Thank you again for your prayers and support. Again the news today is so so wonderful. Thank you Jesus.
Psalm 23:6 Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever.
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 your paths straight.
Update ... 19th Nov 2022 - 1pm
Thank you for praying for Victoria. She is now in Recovery and will soon move to Intensive Care. The surgeon is pleased with how the surgery went. We will know more tomorrow.
So grateful to God and to the medical team.
One of Victoria’s first requests in recovery was for me to sing her a worship song! I am not a singer at all - but under the cover of the mask I sang Amazing Grace and What a beautiful name - The Name of Jesus Christ Our Lord.
Thanks again for your prayers, please continue to pray for a smooth recovery and that she can be back in the pool asap!
Update ... 19th Nov 2022 - 8am
Hello, we have just had the call for Victoria to get ready to go to up to the theatre now. She is tired, but ready. Had a fabulous time at Youth last night. Thank you Jesus that Victoria knows she is loved by you.
Thank you everyone for praying for a successful surgery and recovery.
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 your paths straight.
Blue Pjs on today!
Update ... 18th Nov 2022 - 9am
This was Victoria a couple of hours ago getting ready for surgery. However plans changed at the last minute due to a lack of ICU beds.
Surgery has been postponed until tomorrow.
Please pray for peace for Victoria as she waits for another day. Thank you.
Update ... 18th Nov 2022 - 4am
Well it’s 4am and we naturally woke up for swimming training! But not today.
Victoria came into hospital yesterday in preparation for the surgery today. We are so grateful that she has made it to today without the situation turning into an ‘emergency.’ We are grateful for the medical team who will be giving Victoria quote, ‘the deluxe’ option today.
Victoria’s operation will be the first one today - going to the theatre around 7.15am. The length of the surgery will be at least 4 to 6hrs.
Our current specific prayer points are:
1. For the cyst to be successfully removed.
2. For some tumour tissue to be obtained for further testing
3. For Victoria to come through the surgery with no additional damage.
4. For peace and unity for our family while the surgery is happening and during the recovery period.
We continue to trust that God is in the midst.
Proverbs 3:5-6 - Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight.
Thank you so much for your love and prayers for Victoria and our family
Update ... 10th Nov 2022
Thank you for all your prayers and wonderfully supportive comments - we appreciate them all!
Victoria is scheduled to have surgery on Friday 18th November. We are trusting God with the timing of the surgery. It has been of great encouragement to us that the surgeon who will do the surgery was involved in Victoria's first surgery 11 years ago.
As you will see by this photo Victoria is continuing with her swimming training, even though the left side of her body is getting weaker - especially her arm and hand. We are praying that after the surgery and some intensive rehab the strength will return.
Our current prayer points are:
1. For Victoria to continue to trust in Jesus. (Proverbs 3:5-6)
2. For Victoria to remain well, so that this does not turn into an ‘emergency’.
3. For Godly wisdom for the medical team re the timing and approach for the surgery
4. For Victoria to come through the surgery with no additional damage
5. For peace and unity in our family as we wait, and through the operation & recovery period
And for anyone who feels so led, please pray for a miracle – that the MRI prior to the surgery will show that the cyst and tumour have gone, in Jesus Name.
Again we declare this scripture from Victoria's dedication
Psalm 23:6 - Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever.
Thank you again for your prayers and support. We have 'wobbly' moments (my sister's words), but then we press on and we continue to trust that God is in the midst.
Here is a song that I have been playing before I go to sleep each night - Standing in miracles - by Bethel Music
Update ... 4th Nov 2022
So we knew there would be more chapters to this story, but we didn’t expect this chapter …
Victoria's recent MRI (#35) showed that there is a cyst growing on the tumour (located in the brain stem). The cyst needs to be removed. This is complex and high risk surgery. Planning is currently underway and we are grateful for the medical team, many of whom have been on this journey with us for 11 years. And we are grateful for a surgeon who is willing to do the surgery. We don't have a date yet for the surgery - but it will take place in weeks, not months.
This has been a huge shock for Victoria and our family. Victoria is now 15yrs old and has more understanding about the situation, as do her siblings, also teenagers now. We are taking one day at a time and are continuing to trust that God is faithful and that He has a plan. Victoria and I are declaring this scripture in our prayers each day ... Proverbs 3:5-6 - Trust in the LORD with all your heart and lean not on your own understanding; in all you ways submit to him, and he will make your paths straight.
Our current prayer points are:
1. For peace in Victoria and our family as we wait.
2. For Godly wisdom for the medical team re the timing and approach for the surgery
3. For Victoria to remain well so this does not turn into an 'emergency'.
Thank you for all who have prayed and supported us on this long journey. We appreciate all you have done for our family.
Lastly, here are some of the scriptures that I have received encouragement from over the past two weeks:
Psalm 118:24 - This is the day that the Lord has made; We will rejoice and be glad in it.
Psalm 23:6 - Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever. (This is the scripture God gave us for Victoria's baby dedication)
2 Corinthians 12:9 - But he said to me, "My grace is sufficient for you, for my power in made perfect in weakness." Therefore I will boast will the more gladly about my weaknesses, so that Christ's power may rest on me.
Matthew 17:20 - Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, "Move for here to there," and it will move. Nothing will be impossible for you.
Hebrews 10:39 - But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. (this was the scripture that I leaned into when Victoria did chemo again from October 2020 to October 2021)
Update ... 22nd April 2022
What an adventure life is! So many emotions in just one week.
Victoria had her 33rd MRI last week and the tumour is stable. We are grateful to God for this result. Thank you for all who have prayed both for a good result and for the emotional well being of Victoria as she waited for, and now processes the result. She will have another scan in 3 months.
Last night Victoria was recognised for her sporting efforts, being awarded the "Sports Star with a disability" award at the Lake Mac Awards 2022. As we all know there is one person who gets in the pool and swims, but there are many many that help her get to that place where she can race. We are grateful to all who have helped her is so many ways - thank you. But today I want to give a shout out to Victoria's three siblings - Marshall, Charlotte and Alexandra, who have supported and encouraged their sister in so many ways, over so many many years, often having to miss out on time with their mum because I was either at hospital with Victoria or at numerous physio and OT appointments with Victoria or at sporting events with Victoria. It has not been easy for them. We are so proud of them and their compassion for people who face significant challenges in their lives.
April 2022 - Robinson Family
So while our emotions have oscilated between anxiety, frustration, impatience, fear, gratefulness, overwhelm and joy, just to name a few, especially over the past week, we know that there is One who is the same yesterday, today and tomorrow and He is Who sustains us through it all - His name is Jesus Christ.
"But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved." Hebrews 10:39
Update ... 13th April 2022
October 2021 - A 14yr old girl finishes 12 months of weekly chemo
April 2022 -The same 14 yr old girl competes at the Australian Age Championships in six races and achieves six top 10 finishes!
Girls - 12-14Yrs Multi-class
4th 50m Backstroke
5th 100m Backstroke
6th 100m Freestyle
7th 50m Breaststoke
8th 100m Breaststroke
10th 50m Freestyle
Thank you again to everyone for their prayers and support to help Victoria get to where she is today. It has been a wonderful few days.
October 2021 - Nurses' celebration of Victoria's last chemo
April 2022 - Australian Age Championships
While this is a story of great courage and a lot of hard work, it is also a story of faith. Faith in someone so much bigger than us. Faith in someone who in times of despair gives hope. Faith in someone who in times of turmoil brings a peace that the human mind cannot fathom. His name is Jesus Christ. This Easter why not check out a local church and hear about His story - it is the really Good News for each and every one of us.
"But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved." Hebrews 10:39
Update ... 7th April 2022
This is overcoming! Well done Victoria on persevering throughout 12 months of chemo, continuing your swimming training ( even if some sessions were only 15mins!).
Thank you to everyone who has come alongside Victoria and our family over the past 11 years - family, friends, church family, medical staff, teachers, swim coaches, physios, OTs, and many many more. Thank you.
We have a faithful God - never give up on Him. He never gives up on us.
Update ... 12th January 2022
When Victoria finished chemo in October 2021, I knew that I would need to take some time (probably a lot of time), to process all that had so unexpectedly happened in the previous 12 months.
From the moment of hearing that news in October 2020 that the tumour was growing again, I went into 'Project' mode - the goal of the project - to get our family through this next 12 months with minimal 'damage' - specifically Victoria - her physical and emotional well-being, and Marshall doing his HSC year. Of course I had the ultimate Project Manager guiding me all the way - Jesus.
But back to my point, so busy was I in task mode, that I knew in the future I would need to set aside time to reflect and process. And that time is now.
Sunset at Belmont, NSW - Christmas Eve 2021
In the middle of 2021 I bought Good Grief by Granger E. Westbery and the accompanying journal - The Good Grief Journal - a journey toward healing by Jill Alexander Essbaum, to help me get the reflecting and processing started (when the timing was right).
And as expected on January 1 2022, when I started the journal, the tears came - it was like the tap that had been tightly turned off for 12 months was released and the flooding began.
The process so far has not been easy. It has been painful. But I know it is necessary, and it is reminding me that we were not alone on this journey, God was with us every step of the way, and He is still walking with us and carrying us when necessary.
My prayer in sharing this is to encourage anyone who knows that they too have pain to process, to seek God for the right time, and give yourself permission to grieve.
Finally, today's activity in the journal was to write a poem...
Three years old
Tripping over every day
Brain tumour
Surgery and had a stroke
Left side weak
Much physio and hydro
Improvements
Still needed a walking aid
AFO
One year later tumour grows
Shocking news
A portacath inserted
Chemo starts
Weekly treatment fifteen months
Tough on all
Family just hangs together
Twelve months in
Starlight Trip Mt Buller snow
brings some laughs
Away from reality
Three years on
Shock tumour growing again
Pray Pray Wait
Three months on growing stops
"Normal" life
Swimming, physio, schooling
Growing strong
Teenage years - identity
Eye-sight check
Devastated - Five years on
It's growing
God we trusted you, what now?
Brokenness
Chemo again for twelve months
Is this life?
God, what are you doing in this?
Where are you?
Weekly treatment takes its toll
Covid too
Heightens vulnerability
Emotions
Become harder to manage
Its just tough
Every day a struggle
We wrestle
with our faith, where is He now?
Then we see
His love, grace, mercy, kindness
He is there
He carried us all the way
Chemo ends
Hope returns and life ramps up
Nationals
Training hard, times improving
Can we say
God is good? Yes He is so
Always there
Loving, guiding, strengthening
What comes next?
Only He knows, we will trust
Every day.
"But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved." Hebrews 10:39 NIV.
Update ... 14th October 2021
Victoria's MRI showed that the tumour is stable. In January 2022 she will have another MRI.
We are so grateful to God and the medical team for this result. We are thankful for God's grace that has carried us through these last 12 months, given us the strength to keep going on the days when you just want it all to go away! Victoria is looking forward to feeling 100% each day and working on building up her swimming training sessions.
Thank you again to those who have stood with us in prayer and practically supported us during this time. Please continue to pray that the tumour will remain stable.
This photo is from Wednesday morning, getting ready for the MRI, finding things to amuse ourselves.
"But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved." Hebrews 10:39 NIV.
Update ... 11th October 2021
Another milestone today - 12 months of chemotherapy completed! Praise God for His grace that has carried us through this past year, and especially these past three months with covid circulating in the community.
We are so so so grateful for the medical team who have taken care of Victoria, not only in these past 12 months, but for the past 11 years. Words really cannot express how they have cared for our daughter.
October 2021 - Nurses' celebration of Victoria's last chemo
But these photos of today at Victoria's last chemo appointment say it all. The beautiful nurses decorated her chair and celebrated her and the courage and grace she has demonstrated each week. "Thank you" is insufficient.
Whatsmore the same nurse that administered Victoria's last chemo treatment in October 2013, was the same nurse who did it today in October 2021(. Of course, from the photos below, Victoria is the only one that looks a little older!
October 2013 - Last chemo
Thank you to everyone who has prayed for Victoria and continues to pray. She will have an MRI on Wednesday and we get the results on Thursday. As always we are praying that the tumour will remain stable.
Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever. Psalm 23:6
October 2021
Update .... 27th June 2021
Victoria had an MRI last week (No. 30). It showed the tumour is still stable. We are grateful to God for that result, and are very appreciative for the medical team that are caring for her. She has just over three months of chemotherapy treatment left, finishing in October 2021.
One of the highlights over the past month has been the planning and implementation of a robot to attend school in place of Victoria on the days that she is not feeling up to going to school - either physically or emotionally.
From home Victoria logs on to the robot via her chromebook/phone and controls the robot. She has some 'robot buddies' at school who get it set up each morning, and help it move around if it gets stuck, needs to go up stairs etc. The ipad uses software similar to zoom to transmit back to Victoria.
The teacher and class can see Victoria, and she can see them. She also uses it at recess and lunch to hang out with friends. So it is helping both academically and socially. Brilliant use of technology.
We are very grateful to Canteen for providing this robot for Victoria to use.
Again we so grateful for all the organisations that are dedicated to help children with cancer and their families including, Camp Quality; Canteen; Redkite; Ronald McDonald House Charities.
Alexandra is going on a 'online one day camp' with Camp Quality next week. This day was arranged months ago, and due to it's virtual nature, will still be able to go ahead despite the current covid restrictions. Thank you Camp Quality.
We continue to take one day at time. Every Monday Victoria courageously walks into hospital - some days it's easier than others. I follow along as she takes the lead!
Thank you to everyone who continues to pray for Victoria and our family, and support us in many different ways.
We are trusting that God has a plan and that He will bring good from this circumstance. We will not shrink back, in Jesus Name.
"But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved." Hebrews 10:39 NIV
Update ..... 17th May 2021
Victoria is now half-way through her treatment. The March MRI showed that the tumour is stable. Thank you so much for your prayers and support over these last six months. The journey continues to be an emotional roller-coaster, expecially for Victoria.
As you probably know, sport is a big part of Victoria's life, and thankfully she has still been able to participate in some swimming and athletics competitions, despite having chemotherapy each week. There have been no expectations re results, often it is more about getting into those arenas that she loves and catching up with friends.
But the other week she competed at the CIS (Combined Independent Schools) Secondary Swimming Championships in Sydney, and surprising us all, including herself, she won Gold in the 50m Backstroke Junior Girls Multiclass.
We are so grateful for all the people who are helping Victoria through this challenging time including ...
- The medical team at John Hunter Children's Hospital who continue to do their best for Victoria;
- School (Belmont Christian College) who have been so flexible accomodating her learning capacity during this season);
- Ronald McDonald House Charities who are providing weekly tutoring sessions for Victoria in Maths and Science;
- Canteen who are providing counselling and potentially a robot to attend school for Victoria when she can't make it (Watch this space);
- Swim Coaches who have been flexible with Victoria's training and encourage her to push through when she can;
- And of course family and friends who listen, cry and laugh with us, and provide practical support. Thank you.
So we will press on for another six months with Victoria continuing to receive weekly chemotherapy treatment, and we will continue to declare this truth .... "But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved." Hebrews 10:39
Thank you again for your prayers and support.
Update.... 20th March 2021
Painting has been one of the ways Victoria has been processing this journey. Here is her latest painting completed today, as she waits for her MRI results on Monday. It is titled, 'Wear brain cancer with beauty not with scars.'
Thank you for your prayers. Victoria continues to have chemo each week on Mondays.
Wear brain cancer with beauty not with scars
Update ..... 7th January 2021
Thanks for continuing to uphold Victoria in prayer. The last two weeks have been a mix of wonderful time with family & friends, celebrating Jesus, Victoria's continuing weekly chemotherapy treatment, and getting our heads around what 2021 will look like for our family. Thankfully we are definitely making progress on that last one.
This week Victoria had a review with the eye doctor who identified the potential issue with the tumour. The results, in his words, were "quite remarkably better". Victoria's left field vision has improved a lot from the tests done in Sept 2020. I have made a comparison picture showing Nov 2019, Sep 2020 and yesterday's results - Jan 2021.
We are so grateful to God for the 'remarkable' improvement, and also to the medical team and their wisdom. Receiving these results has given Victoria a boost emotionally, thank you Jesus. Thank you for your prayers, we are believing for full restoration of her sight.
We wore some beautiful masks that were made by a family friend in New Zealand, to the appointment yesterday, and of course Victoria had to take the now mandatory filtered photo!
Before we received the news about Victoria in September I had started reading Bill Johnson's book, God is Good. A truth that can be challenging to believe when circumstances appear anything but good. My reading rate is very slow, a couple of pages a day, so I've just reached page 100! This week I read a section about hopelessness and hope ...
"From my perspective, Psalm 27 is one of the most unusual and complete psalms in the Bible. It is a personal favourite. And as such, it has been a wonderful feeding place for my soul for many years. The writer illustrates his absolute trust in God (verses 1-3), the supreme value for His presence (verse 4-6), and his own devotion to obedience (verses 7-10). But the grand finale is the unveiling of His personal secret to strength (verses 11-14). He put it this way in verse 13: “I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.” It was his hope of seeing the goodness of God in his day that kept him from hopelessness." Page 98
Something to meditate on!
Thank you again for praying for Victoria. She will continue with weekly chemo (now on Mondays), her next scan is March 17, and next eye review is April 14th.
But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39 NIV
Update ..... 19th December 2020
Friday morning an early trip to the supermarket (6.30am) before embarking on a full day including Victoria's chemotherapy treatment (4 hrs from arrival to departure). Christmas Carols were playing and as I walked up and down the aisles I thought about the people whose Christmas plans were being thrown in to disarray due to the COVID clusters in Sydney. I thought about our family and the journey we are on (again). And it all got a bit much. The tears came.
Later in the day at the hospital Victoria had just had her portacath accessed and we heard Christmas Carols again. They sounded like they were being piped through the sound system. But that was not the case.
We ventured out to the corridor, accompanied by a wonderful nurse, full of giggles with Victoria.
This is what we found, live Christmas Carolers in the hospital corridor ......... a tangible reminder that God is with us and Christmas is about celebrating that truth. No matter what we face He is there - carrying us when we need to be carried.
We wonder what will await us next Thursday, Christmas Eve, when Victoria has her next chemotherapy treament. One thing we know for sure, God will be with us.
Thank you again for your prayers and support ..... But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39 NIV
Update ..... 15th December 2020
The MRI on Monday showed the tumour has stablised! So grateful to God and the medical team. Victoria will continue to have weekly chemo for the next 12 months.
The second part of the news has taken a little processing, especially for Victoria, being 13 and just wanting to get back to 'normal life.' But we are working hard to keep focussed on the wonderful news that the tumour is now stable.
One of the songs we play on the way to the hospital each week is Look Up Child by Lauren Daigle. The lyrics are a good reminder of Who is in control ...
You're not shaken by the storm
I know You're in control
Even in our suffering
Even when it can't be seen
I know You're in control
Thank you so much for your prayers and support. Victoria will have another MRI in three months.
Key prayer points are:
1. For God's glory to shine through this situation
2. The tumour will stop growing, shrink and dissolve.
3. Victoria will not experience major side effects of the treatment.
4. Peace in our home.
5. For each member of our family to process this in an emotionally spiritually healthy way.
But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39 NIV
Victoria at the John Hunter Children's Hospital fairy garden
Update .... 4th December 2020
Life is full of contrasts. There are the days that you'd rather forget, and then there are the days that you remember with a smile.
3rd December 2020 - Victoria in hospital waiting room
Friday we had one of those 'lets forget it' days, with Victoria having treatment. Yes, she's smiling in this photo, but moments later she just wanted to leave the hospital and not have this as part of her life.
4th December 2020 - Victoria at Sydney Olympic Park
Saturday, today, we had one of those 'very special' days. Victoria competed at the NSW All Schools Champs, and threw a PB for shotput. And most importantly saw some of her athletics friends from Sydney that she hasn't seen all year due to COVID, so many smiles and much laughter as they reunited. A beautiful day of re-focussing.
But while our lives have these contrasts, thankfully we don't have to do these days, especially the 'lets forget it' days, alone. There is One who walks with us, carries us when we need to be carried, and is trustworthy and is always the same - yesterday, today and tomorrow - Jesus Christ. (Hebrews 13:8). He is the One we are choosing to put our trust in every day.
Thank you for praying for Victoria and our whole family. Victoria will have chemo again next Friday and has an MRI on 14th December.
But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39
I am posting regular updates here on my blog, and on my Facebook page - Victoria Grace Conqueror
Update ..... 29th November 2020
Thank you for praying for Victoria. Her treatment went well this week. While finding out that the tumour is growing again shattered our world, by the grace of God we can still laugh. Another way we pass the time is taking photos and applying filters ....
November 2020 - A very obliging mum!
... well actually Victoria takes the photos and applies the filter, and then shares them with various family members, often laughing loudly (at my expense - against my better judgement I have posted one of Victoria's filtered photos).
This week the laughing was contagious as other patients, parents and staff joined in the laughter too, even causing one of the doctors to comment, What did they add to the chemo today?
God, You work in mysterious ways.
November 2020 - Victoria waiting for treatment
June 2011 we first connected with Camp Quality, an organisation that helps children aged 0-13yrs who have been affected by cancer, and what a blessing they have been to our family over the past almost 10 years.
This week a new season began, as we met with people from Canteen, an organisation that helps young people aged 12-25yrs who have been affected by cancer (eg themselves, their siblings or parents). It was very clear to me from that first meeting that they 'get' what this situation is like for teenagers.
In fact Canteen's About Statement is ...
We get it. Just when life should be full of possibilities, cancer crashes into a young person’s world and shatters everything. Canteen is the game changer.
So grateful for these organisations and the difference they make in these challenging times.
June 2011 - Alexandra and Victoria in their new Camp Quality t-shirts and hats
Victoria's next MRI will be on Monday 14th December. We are praying that the tumour will have stablised.
Thank you for praying for Victoria and our entire family, and for the practical support we are receiving. We are grateful for family, friends and community both near and far. Thank you.
But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39
I am posting regular updates here on my blog, and on my Facebook page - Victoria Grace Conqueror
Update ..... 22nd November 2020
Week 4 done! Victoria spends a lot of hours sitting in this chair each Friday. Last week painting a cup helped to pass this time, along with taking some funny photos of mum (not for public consumption!) This Friday we will be taking Travel Connect Four, Quirkle and UNO with us.
While this journey is familiar in so many ways, it is new in other ways, in that all our children are all 9 years older. The challenge this time for Ken and I is not the logistics of arranging baby-sitters etc, but rather having the emotional capacity, grace and time to listen and re-assure each one. We are so aware that we do not have all the answers, but we know One who does, and He is continuing to sustain us, guide us and give us the wisdom we need.
Two of my favourite scriptures ...
If you need wisdom, ask our generous God, and he will give it to you. James 1:5 NLT
I can do all things [which He has called me to do] through Him who strengthens and empowers me [to fulfil His purpose - I am self-sufficient in Christ's sufficiency; I am ready for anything and equal to anything through Him who infuses me with inner strength and confidence peace.] Philippians 4:13 AMP
Thank you to everyone who is praying for us, sending messages and giving us practical help. I will be posting regular updates here on my blog, and on my Facebook page - Victoria Grace Conqueror
November 2020 - Receiving Chemotherapy Treatment
Update ..... 14th November 2020
Clown Doctors visiting Victoria in 2013.
Clown Doctors (COVID-safe) visiting Victoria in 2020
As difficult as the first week was when we received this news about Victoria, one of the things that made the week so much easier (aside from the wonderful support from family and friends), was reconnecting with the amazing people from John Hunter Children's Hospital who had cared for her from 2011 to 2013.
I wrote this message to some family and friends on the day that Victoria had the surgery to insert the portacath .....
Obviously this news is not what we wanted, but we are grateful to God that this change to Victoria's health was identified now and we are grateful for a medical team that has acted so fast with immense care and concern for our daughter. The first nurse we saw almost broke into tears when she recognised Victoria and read the forms. The oncologist has always shown care for Victoria seeing her a a person with a full life. Ken saw the neurosurgeon who did her original brain surgery, in the hospital corridor, and had quite a chat to him. The surgeon that put the port in was the same surgeon that put the original port in 8 years ago. God is reminding us that He is with us, He hasn’t left us or forsaken us.
Thank you for your continued prayers for our entire family. We know that God is with us. Victoria has now completed three weeks of treatment.
But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39 NIV
Thank you again for your prayers at this time - they are our greatest need at this time. I will be posting regular updates here on my blog, and on my Facebook page - Victoria Grace Conqueror
If you would like to know more about our journey in 2011 to 2013, I have written a book, Victoria Grace - Living with victory through childhood cancer.
The paperback version is available at Koorong and Amazon
The audiobook version is available at Audiobooks.com
Update ..... 7th November 2020
As some people reading this will already know, we found out two weeks ago that the tumour in Victoria's brain is growing again. A routine eye review in the recent school holidays indicated that something could be amiss. A subsequent MRI revealed some growth. This was a shock to us all, however we are continuing to trust that God is good and He has a plan.
Victoria has started chemotherapy on Fridays (2 done) for 8 weeks and then she will have another MRI to assess the situation.
Thank you to everyone who is praying for Victoria, and indeed our entire family as we adjust to this news. If you are in our everyday circle we would ask that you please be sensitive to all our children regarding discussing this situation.
Key prayer points are:
1. For God's glory to shine through this situation
2. The tumour will stop growing, shrink and dissolve.
3. Victoria will not experience major side effects of the treatment
4. Peace in our home
5. For each member of our family to process in an emotionally spiritually healthy way.
The scripture God has given me for this season is ...
But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved. Hebrews 10:39 NIV
Thank you again for your prayers at this time - they are our greatest need at this time. I will be posting regular updates here on my blog, and on my Facebook page - Victoria Grace Conqueror
Update ..... 6th January 2020
Next week it will be 9 years since Victoria was diagnosed with a brain tumour. At that time we had no idea of the journey we were about to go on, as individuals and as a family. We had no comprehension of the love and support we would be given. We had no understanding of the pain we would experience. And we had no comprehension of the enormity and depth of God's love and grace available to us.
Just thinking about it, it's a bit like "Victoria underwent brain surgery, but we all underwent heart surgery." Not physical heart surgery of course, but emotional and spiritual surgery. Over the years emotions have surfaced and caused havoc. They needed to be processed in a healthy way, counselling helped, but ultimately Jesus' love and the ministry of the Holy Spirit has brought freedom.
I'm sure there is still more to be processed, but we know that God's grace will be sufficient for every future moment, minute, hour, day and year.
As I've mentioned before as Victoria gets older (she starts High School this year!) I am very aware that this is her story to tell, but I also know that there are many many people who have prayed for her over the years, and supported her and our family, and they love to know what she has been up to. So with Victoria's permission I am able to share a few of the goings on.
The last 6 months of 2019 were full. In September Victoria had the blessing of being 'Cat in the Hat' in the school musical Sussical Jnr. She performed beautifully, and by the grace of God was able to overcome the insecurities of having a physical disability that is not conducive to 'perfect' dancing. Her God-given personality shone from the stage. We are grateful for the teachers that made this opportunity possible and who were so wonderfully sensitive to her physical needs.
A few days after the musical Victoria was off to Darwin to complete in the School Sport Australia national athletics competition.
We had an amazing seven days in Darwin. Victoria enjoyed catching up with the friends she had made at last year's competition in Melbourne, and making lots of new friends.
It was interesting to see how she has matured as an athlete in the past 12 months, understanding more of what her body can do, the need to rest and an increased mental strength to focus when competing. For example last year in Melbourne the majority of her discus throws were fouls. This year in Darwin, there were no fouls, and all of her throws landed in the centre of the field. She came third in the Multi-class 12 years girls Discus competition.
There was also plenty of time between events to check out some of the tourist sights and rich history of Darwin.
Victoria is continuing with her swimming training and competitions. Late 2019 she swam at a local competition in Singleton, NSW, and found herself in race with a Paralympian swimmer. Needless to say Victoria was out-swum! But she did swim a PB. It's all fantastic experience for her.
One of her goals was to qualify for the 2020 National Age swimming championships. She has achieved this goal, qualifying for 4 events. However the championships are in Perth this year, so we will wait for another year when they are closer to home!
Her left shoulder and leg continue to need regular physio, which in practical terms means daily stretching and strengthening exercises. This can be quite tiresome, but necessary. Sometime this year Victoria will be having botox with the goal of reducing muscle tightness in her left calf. The tight calf muscle impacts on the range of movement in her ankle and the position of her foot, and ultimately her ability to walk. After the botox she will have two weeks of casting on her leg, so she is not looking forward to that process. Please pray that the procedures will provide a good outcome.
Camp Quality has played a valuable role in our lives over the past nine years, giving us many hours of laughter and good family memories. Look how young the girls were when they received their first Camp Quality t-shirts and hats, Alexandra 1yr old, Victoria 3yrs old. A few days after returning from Darwin, Victoria and Alexandra attended a camp in Sydney. Another great time of catching up with friends and the wonderful volunteer companions.
In August 2019 Victoria attended Camp Go Ahead for the first time. This is a camp run by Brain Injury Services in NSW (Randwick Children's Hospital, Westmead Children's Hospital and John Hunter Children's Hospital) for young people aged 11 years to 17 years who have an acquired brain injury. It was another valuable experience for Victoria, again overcoming the fear of stepping in a new environment, and taking up the challenge of making new friendships. Another world opened up to Victoria as during late night conversations the young people shared their stories of how they acquired their brain injuries. Not all the stories were PG, enough said.
So how far Victoria has come in 9 years, always surrounded by plenty of love and support combined with her God-given determination, growing understanding of the value of hard work & pushing through pain and importantly learning how to walk confidently and encourage others when they are experiencing troubles and pain.
Thank you for being a part of this journey. We love and appreciate you.
Throughout this journey I have endeavoured to give God the glory. I truly believe there is only one way to fully living life to the full, and that is by surrendering to Jesus and letting Him be Lord of your life.
But that's not all! Even in times of trouble we have a joyful confidence, knowing that our pressures will develop in us patient endurance. And patient endurance will refine our character, and proven character leads us back to hope. And this hope is not a disappointing fantasy, because we can now experience the endless love of God cascading into our hearts through the Holy Spirit who lives in us! Romans 5:3-5 TPT
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.
January 2011 - Left leg and arm splint - still smiling
March 2011 - Hydrotherapy - Still smiling
May 2011 - First AFO (Splint)
May 2011 - Constraint therapy - forcing Victoria to learn how to use her left hand again (no smiling - all concentration!)
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
Introduction
Chapter 1 The Diagnosis
Christmas Holidays
Reflection – The importance of a shared faith when the going gets tough
Chapter 2 Family, Fun and Fear
Waiting Days
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
Epilogue
Acknowledgements
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
Notes
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.