12th November 2013

We have been enjoying some 'normal' life for the past 2 weeks. Victoria has still had a couple of hospital visits for physiotherapy and occupational therapy. Last week we saw the clown doctors, hence this photo. The therapists advised that Victoria is doing well, although some muscles are tightening, so we now have stretching exercises to do both morning and night. Thankfully the bribe of a mini chocolate santa is working well!

Victoria definitely has a lot more energy now after finishing treatment. She is loving being at school more often, learning and having fun with her friends. Here she is having just the best time at the Festival of Arts day at school.

I am so enjoying this 'mental break' and am only just being to appreciate how much stress I had been under. It is great to have the time and emotional energy to now reconnect with friends in a social setting, rather than in a 'crisis, we need help setting'. We are definitely making the most of these 3 months.

A few months ago I mentioned that I had set up a group, called The Conquerors within the Red Cross blood donation Club Red system. The goal was to have enough donations in the group to potentially save 50 lives by 31st December. We are almost half way there - at 21 lives. So if you have some time between now and Christmas and you are eligible to give blood, why not join The Conquerors and go for it. Click on this link to join The Conquerors. It could be the best Christmas present you give someone this year.

When I was working in the "corporate world" before having children, one of my responsibilities was conducting Post Implementation Reviews (PIRs) on projects with budgets up to $20 million. So I thought it only fitting that I do a PIR on this priceless project, Victoria Grace.

From a statistical point of view, it can be a little confronting as you read the figures. I know for the families that we have met through the hospital these statistics will be not be surprising and that their children will have similar stories, often with many more treatments etc. But for those readers of this blog that haven't had this experience with their children, here is just another reason why these remarkable children should be acknowledged and admired for all they have endured. In Victoria's case, the statistics look like this:

Since January 2011, Victoria has had:

14 General Anesthetics

12 MRIs (scans)

44 Chemotherapy treatments

7 Hospital admissions for high temperatures (Febrile)

8.5 hours of brain surgery

1 portacath insertion operation

1 anaphalatic reaction to chemotherapy drug

And Victoria is only 6 years old.

To see her today, the delightful child that she is, despite all these events in her life, is a testimony to God's grace. She is living out her name, Victoria - victor, conqueror; Grace -favour and blessing. We continue to believe for her complete healing, and know that God has her in His hands. We continue to praise God for all He has done and all He will do.

For He who is almighty has done great things for me - and holy is His name [to be venerated in His purity, majesty and glory]! And His mercy (His compassion and kindness toward the miserable and afflicted) is on those who fear Him with godly reverence, from generation to generation and age to age. Luke 1:49 (AMP)

29th October 2013

We met with Victoria's oncologist yesterday who advised that the MRI indicated the tumor is stable. It has not gotten bigger, for which we are very grateful. The chemotherapy has done it's job well, and God has ensured our beautiful daughter has had minimal suffering throughout the last 15 months of treatment. Again, we are very grateful for His goodness and faithfulness.

The plan going forward is watch and wait. Victoria will have another MRI in February 2014, when again the situation will be re-assessed. So for three months at least her body will get a break too, and we can all enjoy the encroaching Christmas holidays without having to be in a hyper-vigilant state.

Thank you again to everyone who has prayed and/or practically supported us over these recent years. I often marvel at the 'shape' our family is in now, given all it as been through, and know that your prayer and support has been absolutely essential to all our well-being. Thank you for being such faithful family and friends.

Despite the circumstances we have faced, we have continually been blessed throughout this time. This weekend our entire family was blessed when we attended a Camp Quality Family Camp at the Great Aussie Bush Camp at Tea Gardens. We all had the opportunity to get out of our comfort zones. 

Victoria and I pushed the boundaries by going on the flying fox. Well at least I did, Victoria was quite calm about it!

The launching platform was quite high! But we did it! (and I certainly screamed the loudest of the group)

It proved little challenge for Marshall ...

and likewise for Charlotte

who both managed to get about 3 goes each!

Next it was on to the mud pit, which I declined to do. But again Marshall, Charlotte and Victoria took up the challenge.

The staff at the Great Aussie Bush Camp were fantastic, helping the children and encouraging them to give everything at try.

Marshall was in 'boy heaven'

Charlotte pushed on through, determined to do whatever Marshall was doing.

Choice - over or under, Marshall chose under ...

Charlotte chose over, sensible girl! 

And Victoria walked around!

Sunday morning proved to be Ken's biggest challenge, a dolphin cruise on the beautiful Port Stephens.

The children took the opportunity to play in the boom net off the side of the boat.

Once again the staff helped Victoria so she could join in the fun too. They were marvelous.

Alexandra had fun watching on the boat. 

Alexandra did challenge herself by doing rock climbing on the Saturday afternoon, and making it up to the 'red line'. 

Unfortunately I didn't get any photos as Camp Quality treated all us parents to an afternoon off at nearby Tea Gardens. It was great to spend time together as a couple and then hang out with other parents that we now have so much in common with! Camp Quality certainly hits the mark 100% when it comes to supporting children and their families. It is organisations like Camp Quality that again have made a huge contribution to helping our family be where we are today. We are so grateful to them and all their supporters.

As I have said many many times before, Jesus is the Rock I stand on, and will continue to stand on as we enjoy the next three months, and prepare for the journey ahead, whatever it may hold. For now, we embrace today.

The Lord is my Rock, my Fortress, and my Deliverer; my God, my keen and firm Strength in Who I will trust and take refuge, my Shield, and the Horn of my salvation, my High Tower. Psalm 18:2 (AMP)

22nd October 2013

Thank you to everyone who has been praying for us this past week, including today. Thank you too to everyone who emailed and texted messages of support and encouragement today. They all helped us to get through the day with a smile!

Victoria's MRI was very uneventful today. Everything ran like clockwork. There was even time for a photo with the anesthetist  Peter Armstrong. Victoria's MRI was scheduled earlier than normal, which meant we were home just after 5pm.

It was such a blessing to have mum and my friend Lorna with us today for extra support. Their presence really helped me to keep my mind focused on the moment, rather than running away with unhelpful thoughts.

We continue to believe for a good outcome of this MRI. We know that God has Victoria in His hands. He is in charge, as He reminded me this morning as I read my bible, 'Know, recognize and understand therefore this day and turn your [mind and] heart to it that the Lord is God in the heavens and above and upon the earth beneath; there is no other.' Deuteronomy 4:39

We get the results of the MRI on Monday 28th October.

18th October 2013

Two weeks has passed since Victoria finished chemo. Despite having her temperature climb the day after she finished treatment, thankfully peaking just below the trigger point, Victoria continues to do well. Thank  you for continuing to lift her up in prayer.

The night after treatment finished we had a celebration dinner at home. Based on what I had read in the Growing Great Boys book by Ian Grant, I had 3 questions that I wanted to answer as a family. 

#1. Everyone in the family to share something regarding how well Victoria has met the challenge of 15 months of weekly treatments. 

#2. Victoria to share how each person in the family had helped her during treatment.

#3 Everyone in the family to share something positive that had come from Victoria being unwell.

Needless to say the discussion that came from these questions was very insightful.

Because treatment was stopped earlier than anticipated, Victoria was thrilled to be able to spend the whole day at school with her friends for her birthday. We started the day with breakfast at McDonalds.

These past 2 weeks have been like living in a dream, with no hospital visits for treatment and fewer concerns about illness. Victoria has been able to enjoy 2 weeks uninterrupted at school. At home we have been able to do some jobs that really needed doing with the help of my mum and dad visiting from NZ. 

For me, it has also been a very emotional time, with tears coming anytime, anywhere. The supermarket seems to be a favourite place for them to turn up. The psychologist tells me it is very normal after holding everything together for such a long time, and that I should just let them come out and make sure I get some rest. 

There are a few reasons for the tears. Firstly I get very overwhelmed when I think of the huge number of people who have helped us in so many different ways since January 2011. The kindness and grace people have shown our family is a testimony to God's goodness. Secondly I grieve for Victoria, whilst she has been amazing throughout this time, her childhood is not as it should have been. 

Thirdly, in faith we know Victoria's future is good, however as a mum walking through this daily it is tough. The latest lot of vitamins I am taking are called 'Mums Rescue', how appropriate! I am struggling with the thought of going to the hospital next week for Victoria's three monthly MRI. Thankfully once again God has provided support with my mum being here and friends to come up and help us through that long day.

Thank you again for your faithfulness and prayers. Our main prayer points currently are:

1. Victoria will remain well to have the general anesthetic next Tuesday for the MRI.

2. I will have the emotional strength to do the MRI day well for Victoria's sake.

3. The results of the MRI will be positive.

This morning I gained such encouragement from Deuteronomy 7v9, Know, recognize  and understand therefore that the Lord your God, He is God, the faithful God, Who keeps covenant and steadfast love and mercy with those who love Him and keep His commandments to a thousand generations.  I know that the joy of the Lord will be my strength today (Nehemiah 8v10b).

3rd October 2013

This morning when I woke up I felt overcome with emotion at the thought of going up to the hospital again for Victoria's treatment. The scripture from my morning devotion was the second part of Matthew 28:20 - I am with you all the days (perpetually, uniformly, and on every occasion), to the [very] close and consummation of the age. Amen (so let it be). These were the exact words I needed to hear, and have placed in my heart.

I was so distraught I could hardly have a conversation on the phone with my wonderful friend who was bringing us dinner tonight. I thought to myself how am I going to do this for another 3 weeks. Eventually I made it to the shower and took some deep breaths, and felt more able to face the day.

Thankfully a friend from church was going to look after the other children today, so it would just be Victoria and I at the hospital today. Once again, I am so grateful for all the support church has provided us with, especially in the last 3 months. 

Finally Victoria and I made it to the hospital. Victoria had her port accessed, and then the doctor nonchalantly said, "This will be the last treatment today and we will re-assess after the scan." I just sat there a bit stunned, that was not the plan last week. All I could think was, Thank you God, you knew this had to be the last day! We had the support of another wonderful friend from church with us at the hospital today. In fact when she arrived, I left her with Victoria and just went off to have a good cry, tears of relief and joy.

Here is Victoria getting ready to have chemo, with one of the very caring nurses that we are again so grateful for. 

A couple of months ago, Victoria had asked if she could have some goldfish when chemo finished. So as soon as chemo was finished today, we picked up Alexandra and Charlotte, and went to the fish shop. Ken and Marshall met us there. What excitement in the shop!

First Victoria picked out the bowl and all the decorations.

Next step was to pick out three fish. Victoria named them immediately: Amy, Emily and Grace.

It was so exciting

Then after a careful drive home, the fish bowl was set up.

 The fish put in, and Victoria gave them their first meal.

What a day it has been, a morning of despair and complete reliance on God to get me through each moment. An afternoon of joy knowing that we have a time ahead of us where we can be 'normal' family again. And joy at seeing Victoria loving her fish.

You may have noticed a pink sign at Victoria's desk, 'This is a Praise God time.' That sign has been up in our house since Victoria was came home from having brain surgery in January 2011. It has been a constant reminder to me that God is in control even when it doesn't feel like He is, and that He has a plan, and it is always right and good. Indeed His plan for today was right and good.

Thank you again to everyone who has helped us in so many different ways. Words really cannot express our gratitude. Please continue to pray for us as we wait for Victoria's scan on 22nd October and results on 28th October.

,

27th September 2013

Victoria was well enough to have chemo yesterday. The count down is on now, the current plan is 4 more treatments. This may possibly change to only 3 depending on the MRI results we get on 28th October. 

Victoria herself is very well, just a bit tired, so school holidays have come at a good time for her. This week the Newcastle Star had an article about the fundraising event Starlight Movie Month, which has now been extended to end of October. The article included some of Victoria's story and the amazing support she has received from the Starlight Foundation. If you don't live in our local area, you can click on this link to see the story - Newcastle Star article.

Thank you again to everyone who is helping us get through these last 6 weeks. It is all making a huge huge difference to our family.

We continue to chose to trust God for a good report from this next scan. We thank our God for the way that Victoria has coped with this circumstance and overcome all the challenges she has had to face. We thank our God that our family has learnt so many good things over the past few years and has been so humbled by the love and support we have been shown by so many people.

Deuteronomy 32:4 He is the Rock, His work is perfect, for all His ways are law and justice. A God of faithfulness without breach or deviation, just and right is He.

19th September 2013

Victoria was well enough to have chemo today, week 62 done and dusted! We also has an appointment with the occupational therapist who was pleased with the way Victoria was using pressure with her left hand to stabilise the paper when writing. When chemo finishes we may look at some more hydrotherapy to help build strength in her left arm.

A big thank you to everyone who is 'carrying' us through this last 3 months of Victoria's treatment. It is so re-assuring and comforting to know that we have this support. Ken and I have been enjoying our Saturday night date nights, getting out and having that uninterrupted conversation. The Thursday hospital help has made a huge different to my mental state, even as I drive into the carpark, I think to myself, "I have help, this will be a good day." The Thursday night dinners that arrive at our home, finish off a huge day wonderfully. And of course everyone who is praying for our family, thank you, thank you, thank you.

Another big thank you to everyone, family and friends, who made it possible for me to get away from a night earlier this week. This time alone gave me the opportunity to pray and gather my thoughts regarding making an emotionally healthy transition from 'treatment life' to a more 'normal life' for hopefully at least 12 months.  The wonderful Redkite organisation run a 'transition' group via telephone (a telegroup) for 7 weeks. Redkite describes the group this way, "These intimate discussions bring parents together and reduce the sense of isolation they can often feel once they return to the community. They provide the opportunity for everyone to share their experiences and learn from each other, encouraging the development of personal strengths and coping skills." 

Unfortunately I won't have the opportunity to join one of these groups until early 2014, so I really wanted to take some time to consider the changes that will take place in our lives when Victoria finishes treatment at the end of October and how we can best manage that change. Somethings won't change, for example Victoria will still have the portacath in, so the routine of going to hospital if she has a high temperature will still be required. But as Victoria won't be having chemotherapy pummeling her neutrofils, she should be at less risk of an infection, and hopefully the hospital visits will be as simple as checking her out and sending her home again! Rather than the 3 day stay. 

During this transition time, one area we do want to focus on is re-building the connections within our family. By the grace of God they have withstood the barrage of change and upheaval over the past almost three years. But now it is time to move from survival mode, back to doing, what Ian Grant in his book 'Growing Great Boys' calls 'Intentional parenting'. Here is an excerpt from his book...

During the sixties and seventies, a generation of parents who'd rebelled against societal norms and the standards of their parents began experimenting with different ways to bring up their kids. A relatively values-free approach to child rearing became the norm for many. However, as children who have grown up without boundaries are picking up the pieces of their sometimes chaotic lives, there appears to be a bit of a swing back. Educators and parents recognise the value of mentorin, boundaries and a sense of future as passed on by loving and firm parents. I like to call this 'intentional parenting'. (p 193)

Whilst I was away for the night I was finally able to finish reading this book, Growing Great Boys, and it has given me many ideas about re-connecting with our children. I will mention a few over the coming weeks. 

To finish off this post, here is a poem from the book. You may have seen it before, but I think it is well worth another read, especially given the way today's society generally works.

The Anyway Poem
By Kent M. Keith

People are often unreasonable, illogical, and self-centred
Forgive them anyway
If you are kind, people my accuse you of selfish, ulterior motives
Be kind anyway.
If you are successful, you may win some false friends and some true enemies
Succeed anyway.
If you are honest and frank, people may cheat you.
Be honest and frank anyway.
Transparency may make you vulnerable.
Be transparent anyway.
If you find serenity and happiness, others may be jealous.
Be happy anyway.
What you spend years building may be destroyed overnight.
Build anyway.
The good you do today may be forgotten tomorrow.
Do good anyway.
People who really want help may attack you if you help them.
Help them anyway.
Give the world the best you have and it may never be enough.
Give the world your best anyway.
You see, in the final analysis, it is between you and God.
It was never between you and them anyway.