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.

For I am yours and you are mine

 No stress here, praise God! 

Who would think we were waiting for the results of a brain tumour scan? Yesterday the children took the dinghy down to the lake, and Marshall, Best Big Brother in the Whole World, rowed the girls around.

What fun they had, as Kenneth Grahame wrote in Wind in the Willows, just messing about in a boat.

"Nice? It's the only thing," said the Water Rat solemnly, as he leaned forward for his stroke "Believe me, my young friend, there is nothing - absolutely nothing - half so much worth doing as simply messing about in boats."

Watching the children bought back so many memories of my own childhood in New Zealand with summers of sailing, rowing and swimming. Thanks Dad, for giving us such great memories and a love for boats and water that I can pass on to our children.

Thank you to everyone who has been praying for Victoria's healing and peace of mind and sending messages of support. Monday morning some anxiety surfaced, however after talking and praying, it has not been seen again! 

Tuesday night as Victoria and I were reading the Jesus Calling devotional for kids, the devotion for that day was entitled, 'My Definition of Wonderful'. It included these words,

"I created you, not just humans in general. Every detail, every feature of yours, was lovingly and carefully formed by Me. And you are wonderful! ........ All my children are wonderful - each in his or her own unique way. Just look in the mirror, and you will see My definition of wonderful."

These words reinforced a conversation Victoria, Alexandra and I had earlier in the day. Victoria was saying when they were playing tips at school it was easy for the other children to spot her because they just needed to look for her splint. I said "yes, but your splint doesn't define who you are."

Victoria replied, "I know, and neither does the tumour."

Praise God for that understanding in her heart. We thank God for the maturity He has placed in Victoria at such a young age.We then went on to talk about being God's child, and that He defines who we are.

On Wednesday, we took the Jesus Calling devotion book to the scan and while we were in the waiting room, we read the devotion for September 30 - 'I already know'. I almost cried when I saw what it was about, knowing that God was reminding us again, that He was with us and He had everything under control. Here are some of the words.

So when I tell you not to worry - that I will take care of you - I mean it! I know what problems you will face tomorrow. I've already seen them, and today I'm preparing you to face them. So leave tomorrow's worries where they belong: in tomorrow. And when you do get to tomorrow, I'll already be there - without every having left your side today.

What grace we have available to us. I strongly believe our faith in these words is how our children can rest and have fun in the dinghy, leaving tomorrow's worries where they belong. How much can we learn from them???

The scan procedure on Wednesday went well. Victoria was the champion she normally is in the hospital environment. We will get the results on Tuesday.

The week however has not been without it's dramas - surprise surprise. We now have two people in the house wearing splints on their left legs! Ken slipped over at home and has fractured his knee cap. He can weight bear on his leg, but can't bend it and can't drive. Tuesday morning he will have another x-ray and then a review by the doctors, after which we will walk down the corridor to see the oncologist and get Victoria's results. It will be a big morning.

For me, as the mum, this week has been about making daily (and sometimes hourly) decisions to keep my focus on Jesus. Wednesday morning before going to the scan I was listening and singing to the worship song, Oceans (one of Victoria's class's favourites). The words go something like this ...

Spirit lead me where my trust is without borders

As I sang that line I thought, yes that is what I want - trust without borders, but what does it take to get there? Even now with all we have been through, my trust still waivers on occasions. 

We walk upon the waters, wherever you would call me

Do I have the courage to get 'out of the boat', believe and walk upon the water, no matter what?

Take me deeper than my feet would ever take me

Do I trust enough to 'swim' out into the unknown?

And my faith will be made stronger in the presence of my saviour

To this I can testify - my faith certainly does get stronger as I cling to the presence of Jesus.

And I will call upon your name, and keep my eyes above the waters, 

Yes, only One Name, only One way to look, UP.

When the oceans rise, My soul will rest in your embrace.

For I am yours and you are mine.

I am so grateful that I know Who I belong to - no more searching, just the privilege of knowing my saviour.

I realise that this post has a lot of 'God' content in it, and for that I do not apologise, as He is the only way we are getting through this utterly horrendous, long, potentially life destroying journey. He is our Saviour. My prayer is that by sharing how our faith helps us, it will encourage others to also draw on God's help during times of trouble.

Thank you for praying and believing with us. Thank you for encouraging us and helping us in so many different ways.  We continue to choose to trust God each and every day.

The fullness of life

As per usual life has been very full over the past few weeks. Victoria's calf muscle had tightened up significantly, most likely due to a growth spurt. The normal range for ankle movement (flexing your foot up) is between 10 and 15 degrees. Victoria's was sitting at zero - hence she was taking quite a few tumbles. This meant she had to have her lower leg in a cast to stretch out the calf muscle 24/7.  The photo above is Victoria blowing 'air kisses' while the casting is happening.

The good news is that after one week of having the cast on, her range increased from 0 to 6 degrees. This week, with the purple cast, it increased further to 13 degrees. Praise God the cast won't be needed for the holidays, however extra diligence is required with the daily stretching regime. 

Victoria is continuing to experience pain as the muscle continually adjusts. Please pray that the pain will ease in the coming days. The temptation is to tell her just to rest, however what she needs to do is keep moving, which of course is painful for her. It is the classic scenario of no pain, no gain. How do you lovingly explain that to a 7 year old?

Thankfully these muscle issues all happened after Victoria competed in the State Athletics carnival, which was a fabulous day. Victoria had plenty of supporters there, her siblings, grandmother and friend, and aunt. Again she competed with courage in each of her five events. This time there were two other competitors with her. It was lovely to see that connections between the girls grow through out the day. No doubt we will see them again at future events. There was a wonderful Olympic para-athlete there to ensure the girls were throwing the correct weights and jumping from the correct positions. It was a whole new world for us. We are grateful for her Sports Teacher encouraging her to give the athletics a go. It is ironic that Victoria just loves to run.

On a different note, Charlotte organised a very successful Dine at Mine fundraising dinner for Camp Quality. Fifteen of her friends came over for a three course meal. We were so proud of all the effort she put into the evening. We were grateful to her friends and their generosity, some of whom had done jobs to raise money to donate.

Victoria also did a Dine At Mine fundraising dinner for Camp Quality, ably helped by her friend Lily (pictured above in the supermarket). Eight of her school friends came and again gave generously, thank you. 

During the meal, Victoria decided to give an impromptu speech.

Watching both Charlotte and Victoria with their friends at these events bought a smile to my heart. Seeing them all talking, laughing, dancing and singing together, and at the same time helping to make a difference for other children facing huge challenges, was such a blessing.

We as a family were blessed the other week, with the opportunity to use the Harry's House Mobile Retreat. A mobile home available to families with children living with cancer, to travel anywhere within NSW, for a week or so.

It came fully equipped with all you needed, including bikes! Again people's generosity is so overwhelming. The emotional benefits of having the opportunity to get away from home, be outside, playing games with the children, sharing meals with friends cannot be underestimated. 

As this is the first time we have used it, we just went to Swansea, Lake Macquarie (15 minutes from home!). We were a little unsure how the 6 of us would go sleeping in it. We did one night okay, and then on night two Ken, Marshall and Charlotte went home to sleep and returned in the morning! We have the opportunity to use it again over Christmas, but we will take a tent with us too - Wendy's personal retreat.

So the week's have been busy, which has been good as there have been plenty of distractions to reduce the focus on Victoria's upcoming scan. But it is always there - hanging in the background.  Some days it comes to the foreground, and those are such painful days. They are the days when the tears just flow and keep flowing. I am learning more and more to let them come and seek solace in my God. I cannot for a moment imagine the pain of the mothers who have lost their children. 

The love and kindness of people continues to overwhelm me. My Mum and sister phone/email daily to check up on how I am going. A beautiful bouquet of flowers arrived from a couple of teachers at school, who when asked me how I was, witnessed my tears, as I could barely speak.  Due to complete disorganisation on my part I missed the writing critique group by a week, so three of the members had a special meeting this week, just to critique the latest extract for my book. These acts of kindness, certainly help to make the bad days better.

Thankfully, not all my days are like this. All I can do is continue to press into my God, remind myself of His faithfulness and love. Most days, around 10am, I am trying to stop and take time out to spend reading the daily devotion from Jesus Calling, by Sarah Young. As I read, the words minister so powerfully to me. Here is some of what today's devotion says,

Without a focal point to guide you, you can easily lose your way. That's why it is so important to stay in communication with Me, living in thankful awareness of My presence. You inhabit a fallen, disjoined world, where things are constantly unraveling around the edges. Only a vibrant relationship with Me can keep you from coming unraveled too.

Thank you for continuing to uphold Victoria and our family in prayer. We so need it. We are trusting God for a good outcome from this next scan on 30th September. We will get the results on 6th October. 

He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. 

Ecclesiastes 3:11 NIV

Victory and pain

I have come that they may have life, 

and have it to the full

John 10:10

Over the past two weeks there have been two major events that Victoria has participated in that have clearly shown us that indeed she is living life to the full. The first event was the Riding for the Disabled Regional Mounted Games at Raymond Terrace. 

The horse Victoria normally rides each Monday was sick, so she had to ride Becky for the first time. Both horse and rider did well, getting a first in the Barrels (pictured above), and a third in the Bending (riding around poles, slalom style). We are grateful to all the volunteers and people who donate to RDA to give people with a disability such amazing opportunities.

One of the best things about the day for Victoria was the wonderful amount of support she received from family and friends who made the trek up to the riding centre. It was great to have some school friends there to see where Victoria goes each Monday morning. She has been blessed with a lovely group of friends.

On Friday this week Victoria was given the opportunity to compete at the Zone Athletics competition in the 'multi-disability' category. When asked if she would like to participate she immediately said yes and decided to go in five events. With some extra coaching the day before the competition from her very supportive PE teacher, and her friend Jessica, she was ready to compete.

Victoria was the only child in the 'multi-disability' category, so she had the choice of running the 200m and 100m with the other eight year olds or running by herself. She chose to run by herself. The photo above is of her starting the 100m. 

As she ran, alone, down the straight there was plenty of cheering coming from the grandstand and most probably not many dry eyes.

Jessica, a very able and gifted athlete was there, encouraging Victoria all the way, just as she did three years ago during one of Victoria's hospital stays.

In fact, it was wonderful to see the support Victoria received from all her fellow school students, teachers and parents (even if we did all have our sunglasses on to hide the tears). We are so blessed to be part of such a loving school community.

And guess what - as Victoria was the only competitor in her category, she won all her events! 

So now she will go to Sydney to compete in the State athletics carnival, at which there will be other competitors in the 'multi-disability' category. Victoria had a fabulous day, in her words, 'the best day ever'! We are very grateful to her PE teacher who made the opportunity possible. 

The day before the athletics carnival, one of our children asked me, Mum what training has Victoria done for these events? My answer to that was simple, "For the past 4.5 years your sister has, on an almost daily basis, done some sort of physiotherapy, hydrotherapy and occupational therapy to keep her body functioning, that is more than enough training." We are grateful too, to all the therapists who have helped Victoria over the past few years enabling her to compete as well as she did. 

As you can imagine it has been a very emotional few weeks, still trying to get our head around the scan news, and then seeing Victoria enjoying life so much. God has been speaking to me this week about letting myself feel the pain of the scan news, and not just pushing it aside, ignoring it. And at the same time, living with hope and faith. I was so encouraged when I read this passage, regarding the story of Job in The Bible, in the book 'Emotionally Healthy Spirituality'.

He shouted at God. He prayed wild prayers. He told God exactly what he was feeling. For thirty-five chapters we read how he struggled with God. He doubted. He wept. He wondered where God is and why all this had happened to him. He did not avoid the horror of his predicament but confronted it directly. (page 143)

After a week of starting to learn how to 'embrace' the pain, I am feeling stronger and my faith and trust in God seems to have gone yet deeper again. Watching Victoria compete on Friday, showing such courage and determination, among such a loving and supportive school community, again reminded me that God has equipped her with all she needs, both from within herself and surrounding her. She is loved.

Thank you to everyone who has been praying for her, especially for the anxiety. It appears to have settled, there are still tears, but they are no longer daily.

So let us seize and hold fast and retain without wavering the hope we cherish and confess and our acknowledgement of it, for He Who promised is reliable (sure) and faithful to His word. Hebrews 10:23 AMP