He understands

Sydney Olympic Park - 6th April 2016

NSW primary schools state swimming competition

How did we get here? By the grace of God (and the train)

What a roller coaster couple of weeks we had at end of March and beginning of April. Victoria was experiencing pain in various parts of her body, sometimes so debilitating she couldn't get out of bed in the morning. We have since found out that is was likely to have been some sort of reactionary arthritis. Thank you to everyone who was praying for her during that testing time. 

Despite the pain, she managed to compete at the NSW Combined Independent School's State Swimming competition at Sydney Olympic Park in late March, complete with her support team....

Grandmothers, Aunts and ever faithful sister.
What a beautiful family we are blessed to be a part of.

My sister - who acts as a pseudo manager now at these events, sorting out where we need to be, speaking to officials on our behalf when we are not sure what is going on - such a blessing to me.

My girlfriends - who transported us as my car was not certain to make it! Again what a blessing to us.

School friends who help Victoria navigate these events. Here is one of the girls doing Victoria's hair so she can wear the swimming cap.

Victoria came second in her race - multiclass 50m breaststroke. To watch the race please click here.

Coming second in this race meant that she qualified for the next level of competition - all the primary schools in NSW. So back down to Sydney we went on the 6th April. This time with both my Mum and Dad who happened to be visiting from NZ.

 

And we had the rest of the support team too! What wonderful opportunities for our family to come together, so much better than the hospital crisis times of the past. 

It is really only today as I write this blog that the magnitude of these swimming days is hitting me. As I was looking back through the photos, the worship song, How great is our God, by Chris Tomlin is playing. Indeed how great is our God in the life of this little girl. 

As she stands ready to race, I wonder what is going through her mind and marvel at what God has put in her to be such an overcomer, so full of the conquering spirit. She swam so well, coming fourth and improving her personal best time by 5 seconds. This improvement was mainly due to a technique change that Victoria's new physio suggested.  And that is another blessing, the new physio is also a swimming teacher who has plenty of tips for Victoria. To see the race, please click here - If you watch it I am sure you will notice a difference in Victoria's swimming, especially in the first 10 metres.

These swimming events are so much more than swimming events for Victoria. They are part of a journey for her to accept her body, knowing that while it isn't perfect, she can still do things, and do them well. It is also an opportunity to see other children who face similar challenges living life to the full despite their disabilities. With the multi-class events the winner is not necessarily the person who reaches the end of the pool first. There is a process which can take up to half an hour after the race where the officials calculate the times of the swimmers based on their classifications. During this waiting time, the swimmers sit in a room together, chatting as they wait for the results. A very supportive and encouraging environment to be in.

On to something different .... Alexandra has watched her siblings go off to Camp Quality camps for the past five years, but this year was her turn!

She was so excited as she went on the Junior Camp down to Sydney for a night with her great companion Jess. 

Victoria went too, with her beautiful companion of the past couple of years, Naida. Note the matching t-shirts - yes that was pre-arranged!

They had a fabulous time (photo-bomber Charlotte didn't get to go), lots of archery, a visit to the Manly Aquarium and 'Wannabes'  where the children get the opportunity to dress up as 'what they want to be when they grow up'. We love Camp Quality and are so grateful for all they have done for our family. The intangible benefits to our children are indescribable.

This past weekend we had the opportunity to participate in a Camp Quality four-wheel driving day on Stockton beach, including sand-boarding. Once again it was a fantastic day, which lots of great new family memories made. Here are some photos of the day.

Marshall and the dune in the background

Marshall

Charlotte

Victoria

Alexandra

It was quite a trek back up the top do another ride down.

One of the best sisters in the world, Charlotte, carried both her and Victoria's boards up the dune more than once!

It was a very memorable day. So grateful to all the four-wheel drivers who gave up their day to take us out and about, and have their four-wheel drives filled with sand. Thank you.

So it has been a couple of months full of adventures in addition to all the normal life activities. But you know what? We are so blessed to have all these adventures and be able to live each day to the full. These adventures help to keep our mind off the things in our lives that aren't so great - one of those being that tumour!

People often ask me how Victoria is, sometimes I answer, 'good' or 'alright' (even if she isn't). Sometimes I say, 'she is struggling today with the pain'. But a month or so ago I felt God say to me, 'when people ask that question tell them I am holding her in my hands.' Okay, so that is quite a response. I wasn't sure if I had the emotional strength to use those words - even though they were so true. Then a month ago, in the midst of all the pain turmoil, a friend sent me an email. She wrote that she felt God was saying, 'I am here, I've got this, I have her in the palm of my hand'. 

And so I thought, okay God, I am listening, I will use that response. And I have, the first few times with tears, but each time with more and more confidence. One morning during a bike ride near our beautiful lake, I felt inspired by God to write this song / poem about how He is indeed holding Victoria in His hands.

He’s holding her in His hands

He’s holding her in His hands

And I just don’t understand

Some days it just breaks my heart

And I don’t have the strength to start

Being the mum she so needs

That’s ok, He’s all she needs

He’s holding her in his hands

And I just don’t understand

But I know He’s there

And I know He cares

And I won’t let go

Of what I know

He’s holding her in His hands

And I just don't understand

He’s holding her in His hands

But I know He understands

Victoria's next scan is on 18th May, we will get the results on the 19th May. Thank you for continuing to uplift her in prayer and believe that she will continue to know God loves her and He understands, for her continue to live her life to the full despite her circumstances and for her complete healing. He's holding her is His hands.

The Lord is my Shepherd [to feed, guide and shield me], I shall not lack. 

He makes me lie down in [fresh, tender] green pastures; He leads me beside the still and restful waters. 

He refreshes and restores my life (my self); He leads me in the paths of righteousness [uprightness and right standing with Him - not for my earning it, but] for His name's sake. 

Yes, though I walk through the [deep, sunless] valley of the shadow of depth, I will fear or dread no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort me. 

You prepare a table before me in the presence of my enemies. You anoint my head with oil; my [brimming] cup runs over. 

Surely or only goodness, mercy, and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place. Psalm 23 AMP

Swimming, swimming and more swimming

Over the past month Victoria has had the opportunity to compete in various school swimming carnivals. Praise God.

a

What a testament it has been to God's goodness and faithfulness in this journey.

And a testimony to the preservering, never-give-up spirit He has placed in Victoria. Here she is aged three, six weeks after brain surgery, doing hydrotherapy to improve the movement and strength in her left arm and leg.

Years of wearing aids, day and night to help keep her muscles stretched and working, things we can easily take for-granted because our body "just does it".

Challenges galore, but still smiling in the midst of chemotherapy, surrounded by her loudest cheer squad - her brother and sisters. Praise God for four children! I was reading this scripture the other week, and felt God was reminding me that despite all the difficult times, children are one of His biggest blessings to us.

Don't you see that children are GOD's best gift?

the fruit of the womb his generous legacy?

Psalm 127:3 The Message

And what a cheer squad these siblings are, each with their own particular role to play. In preparation for the school carnival Marshall took on the role of coach. Victoria had decided to compete in the 50m breaststroke, as that is the only stroke she can actually swim 50m in. She had one goal in mind, reaching the end of the pool. She knew if she could make it to the end of the pool, she would be able compete at the Zone swimming carnival, in what is known as the 'Open Multiclass' category. Marshall gave his sister plenty of advice and encouragement, although he did get distracted somewhat by the water polo competition in another part of the pool. Please Click here to watch the coaching session.

On the day of the Primary school swim carnival, Charlotte picked up the baton of 'encourager', and along with other classmates and parents cheered Victoria to the end of the pool. Please click here to watch (and listen) to the race. No prizes for guessing who has the loudest voice.

So with the help of Marshall, Charlotte, a very supportive PE teacher and her friends Victoria achieved her goal and finished the race, enabling her to qualify for the Zone swimming carnival.

At the Zone swimming carnival, similar to the athletics, there were no other girls in the Open Multiclass, so Victoria chose to swim by herself. So as she tells everyone, she came first and qualified for the State swimming carnival. Then at the State swimming carnival there were no other girls in the Open Multiclass, so she swam by herself again. 

It was very surreal sitting in the stands, watching your child compete in a race by herself, and have hundreds of spectators and the commentator clapping and cheering her on. It was an emotional challenge to not flood the place with tears. At the Zone carnival we saw one of the Oncology Nurses who has been such a blessing to Victoria, it was very emotional for her too.

We found ourselves in another surreal place the other Saturday, when Victoria was being 'classified' for swimming by the Australian Paralympic Committee. This classification gives her a 'rating' regarding her physical ability to swim different strokes and exceptions for where she cannot meet all the technical requirements of each stroke. Having this classification allows her to swim at higher level competitions. For anyone interested, Victoria has been classified as a S7, SB7 and SM7. 

When we were waiting for the classifiers Victoria and I read the Jesus Calling devotion for the day March 5th. It included this,

Make friends with the problems in your life. Though many things feel random and wrong, remember I am sovereign over everything. I can fit everything into a pattern for good, but only to the extent that you trust Me. Every problem can teach you something, transforming you little by little into the masterpiece I created you to be.

And so now with this classification Victoria is off to swim in the Olympic Pool at Homebush in Sydney next week! There are likely to be other girls in the Open Multiclass category. No doubt it will be another amazing experience on this both ever-challenging and equally rewarding journey. Please pray that Victoria's health and strength is maintained, enabling her to compete. 

Finally, here is a message a friend sent me last week about Victoria's swimming. It pretty much sums up what is going on here.

"Praise God! She's in the pool. She's getting stronger. God has placed boundaries around her life. We don't deny the existence of tumours but we do deny their authority. With every kick and splash she makes today it is a testament to God's miracle working power and a punch in the Devil's gut." 

Yes indeed, we are choosing to live beyond these circumstances, which if you focused on them, could have your curled up crying like a baby in the corner, every day. While we wait for complete healing to manifest, we are determined to make the most of everyday, IN JESUS NAME. It is exactly as the rest of Psalm 127 says

Like a warrior's fistful of arrows

are the children of a vigorous youth.

Oh, how blessed are you parents,

with your quivers full of children!

Your enemies don't stand a chance against you;

you'll sweep them right off your doorstep.

Psalm 127:4-5 The Message

We are not going to lose sight of the blessings God has given us. Thank you for continuing to stand with us believing for complete healing and restoration in Victoria's life, but above all that she will continue to know and grow in her understanding of God's unfailing love for her.

Victory

Surely or only goodness, mercy and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place. Psalm 23:6 AMP

"Stable" is the word we heard from both the Neurosurgeon and Oncologist this week. Praise God. We can do 'stable'. Thank you for standing with us in prayer, believing for God's absolute best for this little girl, Victoria Grace.

It is hard to believe that is has been five years since Victoria was diagnosed and even more difficult to comprehend all that has happened in that time. Many things have changed, but some have remained the same. Victoria's beautiful smile and zest for life is one thing that has not changed. And neither has our faithful God. He has been there in every bit of this huge, long, often exhausting roller coaster ride. Every low, every twist and turn and every high, He has been there.

Yesterday we had a wonderful celebration of God's goodness over the past five years. Thank you so much to family and friends who were able to join us. There were many stand out moments to me, but one that sticks in my mind is seeing Victoria laughing and playing with her friends. 

This journey is very different for her now. Victoria is no longer a three year old, completely reliant on Mum and Dad. She is an eight year old, with her own friends, her own likes and dislikes and her own understanding of this journey. She is the one who sits in the chair closest to the oncologist and views the scans with him, asking the questions, 'Has there been a change?' 'When will the next scan be?'

Ken and I were so proud of her last night when she stood and clearly told everyone the results of this week's scan, including a little explanation of what 'stable' means, followed by something like, 'have fun everyone' and then ran off with a giggle. She is living out her 'name sake' - victor, conqueror, favour, blessing.

We decided to have a visual reminder at the celebration of the victories we have experienced over the past five years - cupcakes.

In fact, 84 cupcakes, spelling out the word 'Victory'. As you can see the girls had great fun making all the cupcakes.

And decorating them (and have you noticed how camera shy they are - not!)

They were then carefully displayed in the park, under Charlotte's direction.

Victory! 

Yet amid all these things we are more than conquerors and gain a surpassing victory through Him who loved us.

Romans 8:37 AMP

Thank you again for your prayers and support and for celebrating with us, wherever you are. Victoria's next scan is on 18th May (pushed out to 4 months - yay), and we are expectant of continuing victories in her life.

Together

For wherever two or three are gathered 

(drawn together as My followers) in (into) My name, 

there I AM in the midst of them. 

Matthew 18:20 AMP

This photo is so much more than a picture of two little girls standing at the edge of the lake. From their gesture we can see a story of the love between them.  From the magnificent sky and it's reflection we can see the majesty of God's creation. 

And then we consider the 'back story'. Who are those little girls? Two sisters who  know that life isn't all 'roses', and have built a strong bond out of those circumstances. Two sisters who know they are children of God and that He is in their midst. Two sisters, who because of God's love for them, can laugh together.

Two sisters who know and have seen God's grace in their lives. Two sisters who have some understanding of the truth of this scripture.

We are assured and know that [God being a partner in their labour] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose. Romans 8:28 AMP

Why are those little girls out so late? The next day one of them is going for a brain scan (her 20th one). She knows what is going on. There is fear. She is human. But there is also joy. Joy, when her focus is elsewhere, on life.

What a lesson for us all. 

Question for today, where is your focus? Is it on your circumstances or is it on the giver of life?

Keep your eyes on Jesus, who both began and finished this race we're in. Study how he did it. Because he never lost sight of where he was headed - that exhilarating finish in and with God - he could put up with anything along the way: cross, shame, whatever. And now he's there, in the place of honor, right alongside God. Hebrews 12:2 The Message

Christ is our example of how to do this life, together with God, and together with people. He is worthy of our praise.

Now may the God Who gives the power of patient endurance (steadfastness) and Who supplies encouragement, grant you to live in such mutual harmony and such full sympathy with one another, in accord with Christ Jesus, that together you may [unanimously] with united hearts and one voice, praise and glorify the God and Father of our Lord Jesus Christ (the Messiah). Romans 15:5-6 AMP

Five Years On - let's celebrate

Five years on from when Victoria was diagnosed and we have so much to be grateful for. Number one is that Victoria is still here with us, full of life and love.

We have always said to Victoria that we will have a big party to celebrate when the tumour is gone, and prior to each scan she talks about the party and who we will invite. However, we have yet to receive that news. In faith, we believe that day will come.

Victoria has a scan next week on 19th January (the actual day, 5 years ago that we got the new about the tumour). We will get the results on 20th, and we have decided that we going to celebrate regardless of the result. We are going to celebrate our God's goodness and faithfulness in the life of our daughter, and our family.

Bless our God, O peoples, give Him grateful thanks and make the voice of His praise be heard, who put and kept us among the living, and has not allowed our feet to slip. Psalm 66:8-9 AMP

We would love for you all to join us to celebrate, however we realise that is not possible for some due to distance. But for those who are local and would like to come and celebrate, we will be having a picnic in a local park, on Thursday 21st January at 6pm. It will be a BYO everything. For more details, please email, text or facebook me.

If you are unable to come for whatever reason, we would ask that you please take a few moments on Thursday to give thanks to God for all He has done in Victoria's life over the past five years.

Thank you for continuing to stand with us believing for God's best for Victoria. We look forward to celebrating with you.

Reflecting and celebrating

It is that "Christmas concert" time of year. We have the privilege of being part of a wonderful church community that loves to celebrate the birth of Jesus Christ. This year the girls were involved in the Christmas production. This is a photo of Victoria and a friend from school in their costumes. 

When I reflect on this photo, and indeed the year of 2015, I am so grateful for the people God has bought into our lives to walk this seemingly long journey with each of us. Family, friends, church community, school community, neighbours, medical professionals, charities and support groups. 

But one of the things I am most grateful for is the friends He has surrounded Victoria with. The friends, who when they are at an ice-skating party (a little challenging for Victoria), rally around her and encourage her. The friends that stay behind to help her get changed after school swimming lessons. The friends that cheered her on as she ran the 200m alone at the zone athletics. The friends that run to her aid if she falls, or is struggling in the play ground. The friends that put prayer cards in at church that say, 'please heal my friend Victoria.'  

As Victoria gets older and her world widens, it is these friends who will help her to get through the challenges and cheer her on. Thank you Jesus that you meet every need in our lives, especially the need for encouragement and friends.

Of course Victoria wasn't the only daughter in the Christmas production. Alexandra was a chicken.... and loved being a chicken.

Charlotte had a couple of roles, including being Santa's helper to meet and greet people, and hand out lolly bags to the children.

We have a feeling that drama, in some shape or form, is definitely going to be part of Charlotte's life. Her ability to make people smile and laugh is a blessing to many, and a testimony of God's grace and power to restore people's lives to joy. Charlotte, as have all our children, has been greatly impacted by Victoria's illness. But praise God, that with His grace, each of them, in their own way, have found a way to cope with the pain and empathy they feel towards their sister.

Marshall's deep connection with his sister Alexandra has enabled him to find laughter again within our family. This term he has been helping out in the kindergarten room on a Friday afternoon, something that both he and Alexandra have enjoyed. Again, the school community has been wonderful in helping restore and meet the needs of our children as individuals.

Moving on to something different, what a surprise we got when we walked past the Bank of Queensland branch in a local shopping centre. Look who we saw on the wall ....

If you are looking to do something different for a Christmas gift this year, why not consider making a donation to many of the charities that support children and families of children with cancer. Here are a few who have had a huge positive impact on our family - Camp Quality, Redkite, Harry's House, The Kid's Cancer Project and the Starlight Children's Foundation. We are so grateful to everyone who donates to these charities and volunteers their time to make the programs come to life. They have all played an integral part in the emotional well being of our family.

Over the past few months I have been participating in a Redkite telegroup specifically for parents with children a brain tumour. While it was sometimes very confronting and emotional, it was good (?) to hear what parents in similar situations had to share about their journeys. The 'on-goingness' of the impacts of brain tumours is extremely challenging both physically and emotionally for the child and carers.

In Victoria's case, she continues to do an hour of leg and arm stretches most days. We have learnt over the past year or so, that if this regime is interrupted even for only two or three weeks, the degradation in Victoria's functionality regarding walking and left arm and hand use is significant, and pain becomes an increasing reality in her daily life. So we are grateful for the funding from NDIA to have a support therapist come up to four times a week to help with the stretches. At our last appointment with the physio, she said that Victoria's hamstrings were the best she had ever seen them! Another thing to thank God for.

However the leg length differentiation is becoming more of an issue. Victoria now has her left shoes built up by 1 cm. The physio has requested that we are start the process of seeing a pediatric orthopedic surgeon with the view to  Victoria having an operation around the onset of puberty to slow the growth of her right leg (something about a staple being put in the growth plate), so the left leg can catch up. We are being responsible parents and following the directions of the physio, but we would ask at the same time, for prayers for her left leg, foot, arm and hand to grow supernaturally, to the point where there is no difference between right and left. We know that all things are possible with our God. 

Thank you for continuing to stand with us believing for complete healing in Victoria and that throughout this journey her faith in God and her understanding of His love for her will grow.

For God so greatly loved and dearly prized the world that He [even] gave up His only begotten (unique) Son, so that whoever believes in (trusts in, clings to, relies on) Him shall not perish (come to destruction, be lost) but have eternal life (everlasting life). John 3: 16 AMP

We are so grateful for your prayers, support and encouragement. As you can see by the photos above, God has been faithful and indeed we are living the life Jesus promised, and living it to the full, despite the circumstances. 

We pray that you and your family will have a fun and peaceful Christmas season.

PS: Victoria's next scan is on the 18th January, and we will get the results on 20th January.

Goodness, mercy and unfailing love

Yesterday as we sat waiting to see the orthopedic surgeon for the review of Ken's knee cap, we read the daily devotion from Jesus Calling. Here is a portion of what it said,

Be willing to follow wherever I lead. Follow Me wholeheartedly, with glad anticipation quickening your pace. Though you don't know what lies ahead, I know; and that is enough! Some of My richest blessings are just around the bend: out of sight, but nonetheless very real. To receive these gifts, you must walk by faith - not by sight. This doesn't mean closing your eyes to what is around you. It means subordinating the visible world to the invisible Shepherd of your soul.

It would be an understatement to say that yesterday morning we were more than ready to see some of God's richest blessings.

The first blessing came with Ken's knee cap review. The splint was able to come off, he was given the ok to drive again and will start physiotherapy to strengthen his muscles.

With such positive news we walked down the corridor, feeling optimistic about Victoria's results. As soon as we went into the Oncologist's office and sat down, he said something like, 'It's looks stable to me.' I sat there a bit stunned, while Ken and the oncologist chatted about his recent holiday.

As we walked back down the corridor to book the next MRI for January, I looked on the MRI request form and it said,

July - progression; September - stable.

Gradually it started to sink in, the July scan had showed the tumour was growing, albiet slowly. News which sent us into a spin. We had been in this position before - March 2012, and the subsequent scan in June 2012 had shown growth of 40% - and then followed 15 months of chemotherapy. 

However, here we are, now, with the September scan results (last week's scan), which showed the tumour was stable - not changing, not growing. There had been no human intervention in the three months in between.

In my mind there was only one reason that tumour had stopped growing - answered prayer. So thank you to everyone who has ever prayed a prayer for our daughter.  As we walked into the hospital that morning, I had a picture in my mind of thousands of people around the world, literally  upholding Victoria in prayer - a beautiful mind-blowing picture.

Throughout these past almost five years we have seen God's mercy, grace and loving-kindness in so many ways in Victoria's life; the successful brain surgery, the effective rehabilitation, the support of family, friends, school, church, neighbours, charities, and of course the continually growing faith and hope within Victoria herself. But this grace we received yesterday was something different again. There were tears, lots and lots of tears, tears of pure joy and relief.

On Tuesday morning, before going to the hospital I shared some thoughts on my God Girl blog, including this scripture,

But there's one thing I remember,

and remembering, I keep a grip on hope:

God's loyal love couldn't have run out,

his merciful love couldn't have dried up.

They're created new every morning.

How great is your faithfulness!

I'm sticking with God (I say it over and over).

He's all I've got left.

Lamentations 3:21-24 The Message

For whatever tough days come in the future, I will be remembering yesterday, remembering God's loyal and merciful love for us. We are sticking with Him. 

We praise God for the testimony of Victoria's name coming to pass yesterday - Victoria - victory, conqueror, Grace - Blessing and favour. We are fully expectant of further healing in her body, claiming the scripture God gave us for her dedication in October 2007.

Surely or only goodness, mercy and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place. Psalm 23:6 AMP

Thank you for continuing to stand with us in prayer, expecting to see and receive more of God's goodness, mercy and unfailing love in Victoria's life.