Tuesday, December 8, 2015

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.

Wednesday, October 7, 2015

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.

Friday, October 2, 2015

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.

Friday, September 18, 2015

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

Sunday, August 9, 2015

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

Thursday, July 23, 2015

We are grateful

This is just a quick update to say thank you everyone who has been praying for Victoria and our family for the past week, and for all the encouraging messages of support. 

Our weekend away with Camp Quality was the perfect place for us to be. The camp was held at a Christian conference centre and all the main rooms displayed the poster above - what a wonderful reminder to us throughout each day that Jesus has come to give us life, and life to the full. Once again we were grateful for another example of God's grace and a reminder that He is with us wherever we go.

We certainly did live each day to the full at camp, including the Christmas in July disco on Saturday night, where Ken spent most of the night on the dance floor with one of the girls. It was excellent to get away, dance, laugh, explore and have fun as a family. We are so grateful to Camp Quality and all they do to support families who are doing this difficult journey.

Please continue to pray for God's peace for Victoria as she struggles with anxiety and fatigue. We, as parents, need so much wisdom to help her continue to live her life to the full, in spite of the negative emotions and tiredness, and to meet the needs of our three other children as best as possible.

Do not fret or have anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God. 
And God's peace [shall be yours, that tranquil state of a soul reassured of its salvation through Christ, and so fearing nothing from God and being content with its earthly lot of whatever sort that is, that peace] which transcends all understanding shall garrison and mount guard over your hearts and minds in Christ Jesus. Philippians 4:6-7 AMP

We are grateful that we aren't alone on this journey. We are grateful to our God who makes His peace so readily available to us. We are grateful to you for standing with us. Thank you.

PS: We are also very grateful for my mother visiting from Auckland and the awesome spring clean she is giving our home!

Thursday, July 16, 2015

Victoria Grace

We have been loving the word 'stable', but this week we heard another word that we didn't want to hear.

Victoria's scan was scheduled for next week. However I had put her on the MRI cancellation list, just in case there was a cancellation and she could have the scan in the school holidays rather than interrupting the first week back at school. On Sunday afternoon the hospital phoned to say that there was a cancellation on Monday 10.30 and did we want it. No hesitation - yes. 

Victoria hadn't experienced any anxiety leading up to this scan, and we wanted to do all we could to keep it that way for her. Thank you to everyone who has been praying for her regarding the anxiety.

On Monday morning Victoria did the scan perfectly, being the champion that she is. We had the expectation that we would have to wait until next Thursday to get the results, but there was a cancellation for the oncologist on Tuesday, the day after the scan, so we were able to get the results on Tuesday this week. 

God has been gracious to us, as few people knew the scan had been rescheduled, we have been able to start to process these results in our time and space. 

Once again, as He done many times in this journey, God had gone before us and pre-organised the support we would need on that day. Firstly, the family that was looking after one of our children while we went to the hospital appointment, knew first hand what it is like to get this sort of news. When we picked the child up, there was no need for words, the mum knew exactly how I was feeling - that is grace. 

Tuesday afternoon had a meeting scheduled at the Camp Quality office to review the videos we had done for the Dine at Mine campaign. (if you are considering participating in Dine at Mine, please do so, Camp Quality is an amazing organisation. We have set up a team, called - The Conquerors, please join it). We decided, despite the news we had received, to continue with the meeting. The Camp Quality staff were fantastic, occupying the children, giving Ken and I the privacy of an office to cry and talk, to cry and talk, and cry some more. During the talking one of the staff mentioned that someone they knew had heard my Mothers Day talk at church and was greatly impacted by it - that is grace.

On hearing of the impact of what I had shared on Mothers Day, I thought, 'Okay God, You are all over this. Despite the circumstance you have and will continue to work all things together for good. I am choosing to continue to put my trust in you.'

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

While talking with Camp Quality staff, they said there had been a couple of cancellations at a Sydney camp this weekend, and offered us the opportunity to go the camp. We are going, and we are going to have fun and laugh as a family - that is grace.

So while this news is not the news we wanted to hear, we will continue to pray and believe for complete healing for Victoria Grace. We will continue to endeavour to live our lives to the full despite these circumstances. We will continue to look for things daily to be thankful for.

Be happy [in  your faith] and rejoice and be glad-hearted continually (always); Be unceasing in prayer [praying perseveringly]; Thank [God] in everything [no matter what the circumstances may be, be thankful and give thanks], for this is the will of God for you [who are] in Christ Jesus [the Revealer and Mediator of that will]. Do not quench (suppress or subdue) the [Holy] Spirit. 1 Thessalonians 5:16-19 AMP

We have much to be thankful for including:
1. Victoria experiencing no anxiety leading up this scan.
2. The cancellations that allowed the scan to be done earlier, so we could have time as a family to process the results.
3. The change in the tumour does not require treatment at this stage. Another scan will be done in three months time.
4. Camp Quality and all who donate to that organisation, enabling people to provide staff and programs that greatly assist families in this situation.
5. You, family and friends who continue to stand with us in prayer and support our family in many different ways.
6. Our God, and the grace and love He continually pours out on us.

Victoria is aware of the change, as are all our children. She has had questions, which we have answered. Satisfied with the answer, she continues on with whatever activity she is doing. We will continue to be open and honest with her, and encourage her to look for things in her life to be thankful for, and to see and know God's love for her.

The next scan is scheduled for 30th September, getting the results on 6th October. 

If you feel led to pray for Victoria and our family, here are some prayer points:
1. That Victoria will continue to know in her heart that she is loved by God.
2. God's perfect peace to reign in Victoria and our family
3. Complete disintegration of the tumour in Jesus Name
4. Complete healing in Victoria's body, in Jesus Name

Again, we claim Victoria's name sake over her life - Victoria - Conqueror, Victor, Grace - Favour and Blessing.

Finally, if you are involved in our daily life here in Lake Macquarie / Newcastle, we ask that you please do not talk about this change with Ken and I in front of our children. As I said, our children are aware of what has changed, but they do not need to hear about it continually. Of course, if you see Ken or I without the children, we are more than happy to talk and pray with you about it, well probably 'cry and pray' is more accurate. Thank you for respecting this request.

Finally, finally, here is one the scriptures that God gave me for this year. I pray it will encourage you, especially at this time, as God's word continues to encourage me daily.

Be alert and on your guard; stand firm in your faith (your conviction respecting man's relationship to God and divine things, keeping the trust and holy fervor born of faith and a part of it). Act like men and be courageous; grow in strength! Let everything you do be done in love (true love to God and man as inspired by God's love for us). 1 Corinthians 16:13-14 AMP

Sunday, June 21, 2015

Living life to the full

Here is Victoria up at the John Hunter Hospital waiting for her monthly port-a-cath flush. We don't like to waste a minute so she is working on her maths homework while waiting. As you can see she is still not phased by the hospital environment, partly due to the wonderful doctors and nurses who are so caring and supportive.

Victoria is continuing to do well in her every day life. Physically she is doing her daily stretches and improving her fine motor skills through the ipad typing. We are focusing on improving bi-lateral movement with arms, and it so happens that cooking is an excellent activity for involving two arms and hands. The bonus is that Victoria enjoys cooking, so there are no complaints about doing that therapy.

Riding for the Disabled is also continuing on Monday mornings. The Regional Mounted Games are on 1st August and this year Victoria will compete 'off lead', which means she will be doing all the steering and horse instruction herself. It is such a fantastic activity for building the core strength, leg, arm and hand muscles. Victoria now has enough strength to give Sprinkles a good 'kick' to tell him to 'walk on'. She is an absolute joy to watch on the horse.

In May we helped out Camp Quality with some marketing for their Dine at Mine national fundraising campaign, coming up in August / September. If you are interested in finding out more about this event or participating in this event, click here . The programs Camp Quality run have made a significant impact on each member of our family, providing much needed family fun and the opportunity through various activities to re-build confidence. Camp Quality activities have also enabled us to connect with other families in similar situations, outside of the hospital environment. We will be hosting one at our home, and our children are also going to host some meals for their friends. 

During this term Marshall, Charlotte and I have been attending a group called 'Sibsrule'. This group 'focuses on building resilient family units that have strong capacity to advocate for the needs of a member of that family relating to disability. We do this by developing skills of functional self awareness, and optimistic communication.'  It focuses particularly on the needs of siblings with a sibling who has a disability. Two out of the three of us were very reluctant to attend the group! However as the weeks passed it became evident that attendance at the group was very necessary, as it provided an opportunity to let more grief surface for each of us - 4.5 years on from Victoria's diagnosis. It has been a very emotional time, yet I believe we are all much more emotionally healthy from our participation, no matter how difficult it has been. The group finishes this week with a game at Laser Tag. I don't think there will be any problems getting them to the group this week.

Talking about resilient family units, here are the children  when we went down to see the VIVID light festival in Sydney. We are so proud of each of them and the resilience they have all developed and the courage they have each shown in their own way. We love to see the strong bonds of love between each of them (of course it isn't evident all the time!). We are grateful to God for His grace in each of our lives and that He is always with us, wherever we go. We know that truth in our hearts.

Have not I commanded you? Be strong, vigorous, and very courageous. Be not afraid, neither be dismayed, for the Lord you God is with you wherever you go. Joshua 1:9 AMP

On Mothers' Day I was given the opportunity to share at church, along with two other amazing mums, some of our journey of having a child with cancer. The theme I was given was - what to do when things don't go to plan. If you are interested in listening to what I shared, please click on this link, and it will take you to the podcast - Mother's Day - Live on the lounge - 10 May.

Victoria's next scan is four week's away, on 22nd July. My mind has started to travel down those dark paths, so it is a moment by moment decision to pull them back on the path of faith and hope. 

We use our powerful God-tools for smashing warped philosophies, tearing down barriers erected against the truth of God, fitting every loose thought and emotion and impulse into the structure of life shaped by Christ. 2 Corinthians 10:5 The Message

I am thinking I will declare this verse every day (and hour if necessary) for the next four weeks! Victoria is blissfully unaware of the upcoming scan, and with three weeks of holidays prior to it, hopefully the anxiety will stay at bay for her. 

Thank you for continuing to pray for Victoria and our family. Specific prayer points at this time include:
1. Peace for each of us, particularly Victoria, as the scan approaches.
2. Victoria to know that God loves her and is always there for her.
3. Complete healing and restoration throughout Victoria's body.
4. Continual emotionally healthy processing of grief for every member of our family.

Ken, Wendy, Marshall, Charlotte, Victoria and Alexandra

Friday, May 1, 2015

Triumph, tears and trust

As you can see by this photo Victoria is continuing to live life to the full. During the April school holidays Victoria and Charlotte went on a Camp Quality Camp. Victoria is pictured here with her wonderful companion Naida, who made sure that they synchronized the colour of the camp quality shirts each day. Victoria had a fabulous time at the camp, drumming, rock-climbing, ten pin bowling and doing copious amounts of craft. I know I have said it before, but I will say it again, we are so grateful to Camp Quality, the organisers', volunteers and people who make donations. They have helped our family immensely.  

Camp Quality also arrange Family Fun days. In April there is was a family fun day at the Toboggan Hill Park at Nelson Bay. Once again we all had great fun, lots of laughs and screams!

The park also had other activities such as hot ice skating, which all the children participated in. 

It was great to see them each set themselves goals on the 'ice', and achieve them according to their various abilities. Another new experience for them all, thanks to Camp Quality.

Victoria's strength and range of movement of her left arm and leg continues to improve. She is very diligent in doing her one hour of stretching each day. In the holidays we took advantage of the non-school time to do some extra physical therapy, alternating daily between hydrotherapy, bike-riding and scootering. Thankfully Victoria enjoys all these activities and is motivated by goal setting. With the bike-riding, she rode 4.3km in 54 minutes, and at the next session she reduced her time by 4 minutes. She is yet to reach her goal of riding without training wheels, but is continuing to work hard on building her strength up in her left leg. Balance is the real challenge for her, but we will continue to try.

There has been a lot going on for Victoria on the occupational therapy front too, with a view to reducing the amount of handwriting due to physical and cognitive tiredness. The alternative strategy is to use an ipad for narrative writing etc. So now Victoria is practicing typing each day too. Practicing the typing for 'typings sake' but also for the strengthening of the fingers on her left hand, to enable the smallest two fingers to move independently of each other rather than together. It is amazing how much one little body needs to do to remain physically functional. 

After only six weeks of daily typing practice, a review by the occupational therapist this week, left the OT speechless as she saw the improvement in strength and isolation movement in Victoria's left fingers. As for me, it bought tears to my eyes to see her reaction. Victoria works so hard at all these activities. And they do put extra load on our family ( I am not complaining, it is just a fact!), making time to fit these daily exercises into an already busy household. They also reduce the time I can spend with our other children. Thankfully we have received some funding to enable someone to come twice a week to help out with the exercises. This has made a big difference to our afternoons, and provided some variety for Victoria, and allowing me to spend more time with the other children.

The grim reality of some childhood cancers has been very much top of mind over the past couple of weeks, as a beautiful little girl who we have gotten to know over the past few years passed away. She was a champion who battled neuroblastoma from the age of 8 months for 7.5 years. Her family has been an inspiration to many who have entered this journey in that time period, including us. At the Celebration of her life last week a poem was shared called The Brave Little Soul by John Alessi. If you have ever wondered why children especially, have to endure such suffering, I feel it is worth reading. It may to help make sense of why there is such suffering. Click on this link if want to read it - The Brave Little Soul. It could be a good idea to have a box of tissues near by.

There are many practical things we can do to help those who are suffering with cancer, and one is to give blood. On Monday when I gave blood I read that 34% of all blood products donated are used by cancer patients. So if you are physically able to give blood, I encourage you to please give and give regularly. One donation can potentially save up to three lives. We have a Club Red group called The Conquerors, which has currently potentially saved 90 lives! So if you are going to give, please join our group - The Conquerors.

Thank you for continuing to uphold Victoria and our family in prayer. We know that it is by the grace of God alone that she is still with us today, and thriving despite the tumour and its impacts. Some days are definitely tougher than others, particularly over the past few weeks, but we continue to put our hope and trust in our God. This quote sums up how it is some days ....

Sometimes belief is off in the sunshine while I'm coated in fog, cold and uncertain, trapped by a sky that feels too heavy to penetrate. But hope lives here, still; God's Word on my brittle heart, full of possibility, already dripping through the cracks. (from Found by Micha Boyett  p143)

Thank you for praying for us, loving and supporting us. We will continue to declare - Victoria - victory and conqueror, Grace - favour and blessing.

Every word of God is tried and purified; He is a shield to those who trust and take refuge in Him. Proverbs 30:5 AMP