18th February 2014

We received the results from Victoria's MRI yesterday when we visited the oncologist yesterday. They were confirmed by the neurosurgeon today. The tumour is stable. It does not appear to have grown since the last MRI in October 2013. 

We are grateful and thank God for this result as it means Victoria can enjoy at least another three months of 'normal' life without being 'on treatment'. 

At dinner last night when we were discussing this result, our 10 year old son asked, 'Why is stable 'good'? Wouldn't it be better if the tumour had reduced in size or had disappeared?'  These are very good questions, to which we have no answer other than we have to trust God and know that He is sovereign in all situations.  Needless to say there was a little more one on one conversation at bed-time about this topic!

It is challenging for us to continually put our trust and hope in God, particularly after getting reports from doctors and hearing of their plans for future treatment. Yesterday we faltered. Today we are again strong in the Lord. We look forward to the day when we can be a living example of this scripture, when we will always have hope and we will proclaim His mighty acts ....

But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of yoru salvation all day long, though I know not its measure. I will come and proclaim your mightly acts, O Sovereign LORD; I will proclaim your righteousness, yours alone. Psalm 71:14-16

Thank you to everyone who has been praying for us over the past two weeks. Your prayers have carried us through an anxious time.

Victoria's next scan is scheduled for May 6th. She is going to attempt to have the MRI without a general anesthetic which will hopefully work out well. If not, there is a back-up date booked for May 13th to do the MRI with a GA. 

Ken and I were blessed to spend 2 nights away last week in the Hawkesbury Valley. A break away made possible by extended family and loving friends. Thank you. We had such a beautiful time, just like a second honeymoon. We stayed at the Tizzana Winery bed and breakfast (no children allowed!).  Here are a few photos .....

The Rose Garden outside the room we stayed in

The view of the vineyards from the breakfast table.

Reflections in the Hawkesbury Valley

During a walk down Tizzana Road, I found the Serang Church, high on a hill.

The bell on the Serang Church.

Five minutes down the road from where we were staying was the Ebenezer church, the oldest church in Australia, built in 1809.

Thank you again for your prayers and support. It really means the world to us.

8th February 2014

Thank you to everyone who has been praying for us over the past week and sent messages of encouragement and support. Victoria went through the day with her normal grace and style. Here she is after 9 hours of fasting, waiting for the MRI , still full of smiles!

Whilst Victoria went through the day very well, I cannot say the same for me!  In fact there have been more than a few times in the past week when I have felt very fragile indeed! It isn't the fear of what the MRI will show as Victoria is looking so well. Rather I think it is more another wave for grief coming out, anytime, anywhere! Sunglasses have been handy!

Throughout this week God has been ever so gracious to me yet again. I am still reading the book 'Names of God' by Nathan Stone and just happen to be up to the chapter, Jehovah-shalom, which means God is peace. So for the past week I have read many scriptures proclaiming this truth. Here are some of them ...

Leviticus 26:3,6

If you walk in My statutes and keep My commandments and do them ....  I will give peace in the land; you shall lie down and none shall fill you with dread or make you afraid; and I will clear ferocious (wild) beasts our of the land, and no sword shall go through your land.

Psalm 29:11

The Lord will give [unyielding and impenetrable] strength to His people; the Lord will bless His people with peace.

Isaiah 26:12

Lord, You will ordain peace (God's favour and blessings, both temporal and spiritual) for us, for You have also wrought in us and for us all our works.

Isaiah 26:3-4

You will guard him and keep him in perfect and constant peace who mind [both it's inclination, and it's character] is stayed on You, because he commits himself to You, leans on You, and hopes confidently in You. So trust in the Lord (commit yourself to Him, lean on Him; hope confidently in Him) forever for the Lord God is an everlasting Rock [the Rock of Ages].

Being reminded of this truth every day has helped me immensely this week. 

Despite this outpouring of emotion, there have been plenty of blessings this week too, including having my beautiful Mum visiting from New Zealand. Another pair of hands around the home makes a huge difference to our day. Secondly Victoria was able to complete the entire first day of school, unlike last year which involved a visit to the hospital after falling out of bed. I must add that she has never fallen out of bed since! Also, Victoria got a new splint this week, which actually fits into her existing shoes, so she doesn't have to go through the confronting process of wearing different size shoes on each foot.

Thank you again for your prayers and support. We will find out the results of the MRI on Monday 17th February. We are hoping confidently in God for a good outcome.

Finally today, for anyone who lives nearby, Harry's House is running an event called the Harry's Challenge 2014 on the 22nd and 23rd of March at Stockton. It will include a 5km family fun run/walk, stand up paddleboarding and a fitness circuit. 100% of the registration fees go directly to Harry's House. Please click on this link if you are interested in the event, Harry's Challenge 2014.

27th January 2014

Three years ago today we were storming heaven in the waiting room outside the operating theater at John Hunter Hospital, as Victoria underwent brain surgery.

Today we give God praise and glory that she is still here with us, dancing, singing and praising God from her heart herself. She is an incredible child, determined and undeterred by the challenges she has faced. We pray that she will continue to garner strength from God, for all that is placed in her path. We claim Psalm 16:5-11 over her life.

The Lord is my chosen and assigned portion, my cup;

You hold and maintain my lot.

The lines have fallen in pleasant places; yes I have a good heritage.

I will bless the Lord, Who has given me counsel; yes, my heart instructs me in the night seasons.

I have set the Lord continually before me; because He is at my right hand. I shall not be moved.

Therefore my heart is glad and my glory [my inner self] rejoices; my body too shall rest and confidently dwell in safety.

For You will not abandon me to Sheol (the place of the dead), neither will You suffer Your holy one (Holy One) to see corruption.

You will show me the path of life; in Your presence is fullness of joy, at Your right hand there are pleasures forever more.

Last week was full of various appointments for Victoria, a fitting for a new splint, occupational therapy, physiotherapy, port flush and speech therapy. Throughout these appointments we were reminded again of the physical challenges Victoria is likely to face in her future. It was hard some days to see beyond those challenges. Hence I believe God showed me this Psalm late last week to remind me that those physical issues do not define who Victoria is, but rather it is He that defines who she is. It is God who has given her the strength and determination to do the stretching exercises each morning and night, even reminding me when i forget! It is God who has kept her spirit sweet despite the disappointment of not being able to do some things her siblings and friends can do. It is God who bought her through that operation three years ago today and has allowed us to continually be blessed by her presence. Indeed He holds and maintain's Victoria's lot. He will show Victoria the path of life.

Thank you Jesus.

17th January 2014

We have just had another great week away at Harry's House at Stockton and are so very grateful to the Meyn family and everyone who has contributed to this wonderful retreat. It is such a blessing to escape, not far from home, and enjoy another aspect of the beautiful place in which we live.

One afternoon we ventured out for a family bike ride around the waterfront. Unfortunately I was the only one to have a tumble, primarily because I was too keen to get going and didn't bother to change the seat height! I was almost run over by Victoria, much to the hilarity of the other family members.

Ken really enjoyed the trike bike!

As some of you might have seen on Facebook, the children were treated to some standup paddleboard lessons courtesy of 2UP SUP Newcastle.

Marshall and Charlotte very quickly got the hang of it, and loved it.

Victoria, after watching Marshall and Charlotte decided she would like to have a go too. After much perseverance and encouragement from Pete, she managed to stand up for 13 seconds. No small feat with her physical challenges. 

Thank you to 2UP SUP for providing such a great time for the kids.

Upon returning from Harry's House, another treat was instore, a ride in Arrive First Class, stretch hummer. It was a fun night, we shared with a couple of other families from Camp Quality.

The ride included the added bonus of stopping for an ice-cream at Newcastle Beach. 

Thank you to Arrive First Class and Camp Quality for adding something extra special into our holidays.

When I reflect on all the opportunities and experiences our children have had in the past 3 years, it is indeed one of the biggest blessings of Victoria's circumstance. Certainly we would not have asked for this circumstance to come her way. However, despite the trauma, pain, disappointments and fear, our children have, through the generous provision of these events, holidays, camps, built resilience, confidence and a knowledge that something good can come of out something bad. Character traits and life lessons we hope they will always remember and bless them in their lives.

We are assured and know that [God being a partner in their labor] 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

Thank you for standing with us as we patiently live through the 'fitting' of God's plan, and know that it is good. Please continue to pray for peace to reign in our family as Victoria's next scan approaches.

5th January 2014

Many people come across our paths in life. This precious lady is one I will never forget. Yesterday we picnicked with her and her beautiful family at the very spot when almost 3 years ago she, full of grace and wisdom, suggested to me that something was not right with Victoria, and that we should go to the doctors asap. 

This was I should mentioned, after we visited a doctor 3 times in the previous 5 days to find out why Victoria was falling over all the time. After a hip x-ray and ultrasound, we were told by the doctor, she will be all right, come back in 4 weeks time.

However, this was clearly not the case, as within a week of this conversation with my friend in the park, Victoria was in the operating theater having brain surgery. Clearly waiting four weeks was not the best course of action. 

I will be forever grateful to my friend for the grace and love she showed to me that day at the park. For the way she communicated to me about, what I now know, was a very serious problem.

I will be forever grateful to God, who knew that after the misdiagnosis from the doctor, that someone else was needed to point us to the help Victoria needed. 

Needless to say I was a bit teary in the park yesterday, as I relived some of the emotions of that day. But as I watched with amazement Victoria running around, playing and laughing, I was reminded again of God's faithfulness throughout this journey. And the smile returned to my face.

It has been 3 months since Victoria stopped treatment. On New Years Eve, I felt finally able to take down some of the signs I had put up around our home regarding hand hygiene, Victoria's medications, emergency phone numbers, mouth wash regimes etc. It was a surprise to me that it has taken me so long to emotionally have the strength to do that simple, but significant and symbolic task.  And hopefully prophetic task!

I replaced the signs with the verse of scripture I believe God has given me for 2014. A scripture to remind me of the benefits of living God's way. Benefits we have experienced as we have pressed firmly into God during this time of trial. The challenge now as this trial ends and life resumes to some normal capacity, is to keep trying to live God's way, looking to Him for everything and in everything. Here is the scripture:

But what happens when we live God's way?

He brings gifts into our lives, much the same way that fruit appears in an orchard - things like

• affection for others
• exuberance about life
• serenity

We develop 

• a willingness to stick with things
• a sense of compassion in the heart
• a conviction that basic holiness permeates things and people.

We find ourselves 

• involved in loyal commitments
• not needing to force our way in life
• able to marshal and direct our energies wisely

This scripture is from Galatians 5:22-23, The Message version. In other versions it is often called the fruit of the spirit verse.

Thank you again for continuing to pray for our family as we draw closer to Victoria's MRI on 6th February. We thank God that the results to be positive.

Happy New Year!

22nd December 2013

In the crazy lead up time to Christmas, we have been blessed to have a week's time out at the Ronald McDonald Family Retreat at Forster. These cottages, on the riverside, are just beautiful and were made possible by the very generous people and businesses in Forster and surrounding areas. 

We are so very grateful to everyone who has contributed to the establishment and on-going upkeep of this retreat. It has indeed been a place of respite for our family. This break away has been another crucial part in the restoration our family has been experiencing in these past two and a half months since Victoria stopped having treatment. 

One simple example relates to this boat, our Walker Bay dinghy. We have not used this dinghy since the week before Victoria was diagnosed, almost three years ago.

Life has been so hectic and unpredictable in the last three years and neither Ken nor I had the energy or desire to launch and use this boat. Yet now things are so different. We all had a great time using it this week at Smiths Lake, south of Forster. Marshall and Charlotte improved their rowing skills in this magnificent location.

The children have enjoyed hanging out together (well most of the time), without the interruptions of hospital visits for treatment.

Marshall has loved exploring on his Christmas bike, taking time on to reflect on whatever 10 year olds reflect on!

This time off treatment has given Victoria an opportunity to enjoy aspects of her life without being so worn out by the hospital routine, and so physically tired due to low immunity. You can see the difference in her face. Here is a school photo taken in March this year.

And here is a photo taken a couple of week's ago.

And check out the back of her hair!

Now a full head of hair once again. Praise God!

Personally I have used this time to evaluate how I am travelling along this journey. Having made it this far, I felt it was time for some reflection and also some consolidation and preparation regarding the future. 

In terms of reflection, living in survival mode for so long takes a toll on some relationships. Expectations are unmet, often because they are unrealistic! Words are said in moments of high stress, words that never should have been said at any time. Understanding of and empathy for other peoples' worlds is limited as you try to navigate through your own circumstance. Relationships can definitely be a casualty of a crisis. I took the opportunity whilst a way this week to reflect on my relationship with my Dad and how it has been restored over the past couple of months. I wrote down my thoughts and submitted it to ABC Open. If you are interested in reading a story of restoration, please click here.

In terms of preparation for the future, I attended a Carer's workshop last month. The workshop focused on how to look after yourself when you are caring for someone. It split life into 4 areas, spiritual, physical, emotional and social. It looked at ways of building support and resilience in each of these areas. For myself it confirmed that the spiritual aspect of my life had been the key to getting through these last three years. The inner strength I gained from personal devotional time with God each morning. The wisdom God had given me in determining what steps we needed to take as a family each day. The peace and assurance God had given me on the not so bright days. The knowledge that God would provide all that we needed whether that was practical help, emotional support, finance or a holiday! God has definitely been the center of this journey, my Rock, and my refuge. His grace has certainly been sufficient on the days when I forgot that He had it all under control! He has taught me how to be thankful in all circumstances. Hebrews 13:15 sums it up ..

Through Him, therefore let us constantly and at all times offer up to God a sacrifice of praise, which is the fruit of lips that thankfully acknowledge and confess and glorify His name.

This course also reminded me that the physical and social aspects of my life had received very little attention during these past years. So now I am more than making up for that, especially on the social front!

Thank you again to everyone who has helped us in so many different ways during the past year. We are so absolutely grateful to you all and so blessed to have you in our lives. The victory we are witnessing is your victory too. Let us all offer up a prayer of thanks this Christmas to God and His faithfulness. Merry Christmas from the Robinsons.

And the Word (Christ) became flesh (human, incarnate) and tabernacled (fixed His tent of flesh, lived awhile) among us; and we [actually] saw His glory (His honour, His majesty), such glory as an only begotten son receives from his father, full of grace (favour, loving-kindness) and truth. John 1v14 (AMP)

2nd December 2013

Praise God for the very different Christmas experience we are having in 2013. This very day last year, 2012, Victoria was in hospital with a high temperature and we were utterly exhausted in so many ways!

This year we are still utterly exhausted, but for very different reasons! For reasons of celebrating and enjoying life in so many wonderful ways! God is so faithful.

Victoria had the opportunity to help out with the training of some hippotherapists a couple of weekends ago. She couldn't wait to get out there on the horses.

This time she was riding Susy, quite a bit bigger horse than Wedge and Sprinkles. I still marvel at this program and how it makes the exercises so much fun for the children.

Riding in the outdoors arena is always a great experience, especially when are facing backwards! As one of the therapists said to me, this girl is full of spunk!

I sat and watched, and of course cried again, at the kindness and generosity of these people.

And if you are wondering about the physical value of this therapy, well here is a tiny insight into what it can do. Before getting on the horse, the distance from the floor to the Victoria's finger tips when she bent over with her legs straight was 30 centimeters. After the therapy session on the horse, the distance reduced to 20 centimeters!

During this weekend we also celebrated Alexandra's 4th birthday. God reminded me of what a blessing she has been to Victoria. A lot of time in the last three years of Alexandra's 4 years of life have been spent accompany Victoria to therapy sessions, chemo treatments, and many different doctors appointments. She has been an absolute blessing, being the best playmate to help Victoria pass the time. Only a handful of times in those 3 years has she lost patience with the attention Victoria has been receiving, a testament to all the wonderful medical staff we have come into contact with who have included Alexandra where possible, and to Alexandra's maturity well beyond her years. We love you Alexandra Fay!

Last week we had the opportunity to be at Sydney at 7am (yes, left home at 4.15am) to participate in the Starlight Foundation's Christmas party. The early arrival meant the children had the added bonus of being on the Sunrise TV program.  

There were a couple of other families from the Hunter region there too. So the children all had fun hanging out together, racing from ride to ride.

To see the joy on the children's faces, made the early morning start well worth it!

Last night we had the privilege of attending the opening of the Special Olympics in Newcastle. It was again an amazing night, seeing the joy in the athletes faces as they were being celebrated!  Another event to broaden our children's appreciation that we are all different, and we are all God's children, loved unconditionally by Him.

In amongst all these activities too we have attended the Camp Quality Christmas Party. I have said it before and will say it again, I do so love this organisation. Through Camp Quality Marshall and Charlotte have had the opportunity to start building another set of friendships with children they share a unique bond. These children understand the impacts of living with a child having chemotherapy. They understand the impacts of having one parent and their sibling in hospital for nights at a time. They understand the chaos and stress it brings into the family. They also understand the need to make the most of these wonderful opportunities to escape and have fun. Without Camp Quality Marshall and Charlotte would not have had the time and  place to build such an important support network.

So we are definitely making the most of this time with Victoria not having treatment, and a believing for it to be a long time! Last week, God drew me to this scripture, Psalm 91 v 14 and 16. At the weekend, one of my amazing Christian friends encouraged me at the weekend to claim this scripture specifically over Victoria's life, by inserting her name into the scripture. Please stand with us and claim it over Victoria's life as she lives out each day in victory in Jesus Name.

Because Victoria loves me, says the Lord, I will rescue Victoria. I will protect Victoria, for Victoria acknowledges My name. Victoria will call upon Me and I will answer Victoria. I will be with Victoria in trouble. I will deliver Victoria and honour Victoria with long life. I will satisfy Victoria and show Victoria my salvation.

Thank you for standing with us and upholding us in prayer.