MRI succesfully done, tumour is stable

Victoria successfully stayed still in the MRI machine today for 20 minutes, providing the pictures required. Hence the back-up MRI booked for next week with the general anesthetic has been cancelled! From this day forward she can do the MRI this way. The whole procedure was over in 2 hours rather than 6 or 7 hours and no fasting required!

The technician said she was one of the best children they had had in the machine in terms of lack of movement. We praise God for the maturity and composure she demonstrated today. Thank you for praying for her to be peaceful and stay still.

Whilst Victoria's port was being de-accessed, Ken spoke to her oncologist and asked if he could have a quick look at the scan now, instead of having to wait a week for the results. He was very obliging and fitted us in between other scheduled appointments.

The oncologist advised us that the tumour is stable. We thank God for this result. We pray that we can all continue this journey with great endurance and patience, daily drawing closer to our faithful heavenly father, to fulfil His purposes for each of our lives. 

Colossians 1:9-12 For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of His will through all spiritual wisdom and understanding. And we pray this in order that you may live a life worthy of the Lord and may please him in every good way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. 

Thank you for continuing to stand with us in prayer and claiming Victoria's name over her life: Victoria - conquer, victory; Grace - favour and blessing. 

The next MRI is scheduled for 7th August this year.

Fighting anxiety and MRI preparation

Victoria returned to horse riding on Monday this week at the Riding for the Disabled Centre at Raymond Terrace. Alexandra was with us too. Together the girls had fun warming up on the barrel horse, accompanied by Mr Care Bear. Victoria had a fantastic riding session, complete with the 'fist pump' when she completed the slalom exercise around the poles. It is so good to see her participating in a physical activity that she can do so well and enjoy. 

This is such a contrast to what we experienced during the last week of school holidays when Victoria was unwell. For four days she barely ate, seemed overcome with tiredness and of course had high temps which required a hospital visit.

Whilst we are pretty sure that it was just a common virus causing the illness, these type of events are certainly not helpful to our emotional state so close to Victoria's impending MRI. We have certainly noticed a pattern over the years that our anxiety levels increase as each MRI draws closer, particularly in the final 2 weeks. It is such a mental battle to stay strong and positive at this time. Prayer of course is always a help to reduce the anxiety, as is plenty of quality rest, and not too many goings-on around the home (which can be difficult to avoid!). And of course, for me, delving more into God's word, as this scripture so aptly reminds us to do ....

For whatever was thus written in former days was written for our instruction, that by [our steadfast and patient] endurance and the encouragement [drawn] from the Scriptures we might hold fast to and cherish hope. Romans 15:4 (AMP)

In fact, it is the word 'endurance' that God has asked me to do a scripture study on. So I may well be sharing more 'endurance' scriptures with you over the coming weeks!

Thankfully this week, Victoria is back to her fun loving, energetic self, as you can see by the horse riding photo. So we are now in preparation mode for the MRI next week. We have been searching You Tube for videos to show Victoria what the experience will be like without having a general anesthetic. 

We have found some fascinating videos focusing just on the sounds of the machine ... click here to listen to the sounds recorded by Erim Kaska. The children so enjoyed listening to it, they started dancing (well, actually stomping) around the room to what sounded like Industrial style music.I had to say to Victoria, you know you won't be able to dance in the MRI machine!

We also found lots of helpful videos with technicians explaining and showing children the entire procedure, including the interesting helmet Victoria will have to wear. It has a mirror on it so Victoria can what a movie during the procedure. Click here to view one of them. After all this preparation, and the bribe of a new beanie kid if she is able to do the MRI without the GA, Victoria is now quite excited about having yet another new experience.

Please pray that Victoria remains excited about the MRI without the GA, and that she can indeed stay as 'still as a statue' for the entire MRI. We will get the results on 15th May, and are believing that they will be very good!

On a slightly different note, I have just finished reading the book One Thousand Gifts by Ann Voskamp. It describes Ann's journey of moving from a hardened heart derived from major life traumas to a thankful heart that can see God's goodness in everything.  Here is an excerpt regarding her thoughts on Trauma and God. I found it quite insightful and hope you do too.

"Trauma’s storm can mask the Christ and feelings can lie. I draw all the hurting voices close and I touch their scars with a whisper: sometimes we don’t fully see that in Christ, because of Christ, through Christ, He does give us all things good – until we have the perspective of years.

In time, years, dust settles.

In memory, ages, God emerges.

Then when we look back, we see God’s back

Wasn’t that too His way with Moses? ‘When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until I have passed by. Then I will remove my hand and you will see my back” (Exodus 33:22-23 NIV)

Is that it? When it gets dark, it’s only because God has tucked me in a cleft of the rock, and covered me, protected with His hand? In the pitch, I feel like I’m falling , sense the bridge giving way, God long absent.  In the dark, the bridge and my world shakes, cracking dreams. But maybe this is true reality: It is in the dark that God is passing by. The bridge and my world shakes not because God has abandoned, but the exact opposite: God is passing by. God is in the tremors. Dark is closest at work, forging His perfect and right will. Though it is black and we can’t see and our world seems to be free-falling and we feel utterly alone, Christ is most present to us, I-beam supporting in earthquake. Then He will remove His hand. Then we will look.

Then we look back and see His back.

I look in my rearview mirror. The bridge I cross on the way to the chapel has fallen behind the hills. I can still see, in memory, the river’s winding light, mirror on moving water.

God reveals Himself in rear-view mirrors.

And I’ve an inkling that there are times when we need to drive a long, long distance, before we can look back and see God’s back in the rearview mirror.

Maybe sometimes about as far as heaven – that kind of distance."

Excerpt from pages 156 and 157

Thank you again for upholding Victoria and our family in prayer. We look forward to sharing some great results with you in the next couple of weeks.

15th April 2014

Loop the Lake finish line, March 2014. And no, we didn't ride the 85 km around the lake! Jenny and I did the 16km route, whilst Ken and the kids joined in at Warner's Bay. For those of you who read this blog and don't live locally, Loop the Lake is an event organised by the Rotary Club of Warner's Bay, raising money for the John Hunter Children's Hospital. A great hospital, but a place we have spent too much time in!

Aside from the smiling faces this picture shows, to me this picture also represents the restoration of our family. A picture of our family now being able to get out into the community, participating in an event as a whole family.

It is 6 months since Victoria finished treatment and it feels like our lives are only just beginning to open up again, moving out of survival mode. Each child now has an out-of-school activity that they are enjoying, gaining skill and confidence in. Whilst Victoria was on treatment we ceased most activities due to the physical logistics and emotional strength and organisation required to get 4 children to where they needed to be with the equipment they needed. 

I praise God for this time of restoration. Emotional restoration within each member of our family. Relational restoration between each member of our family. God has been so faithful in showering us with love and grace throughout this journey. Psalm 63:1-8 provides a reflection on moving from surviving to fully living.

O GOD You are my God, earnestly will I seek You; my inner self thirsts for You, my flesh longs and is faint for You, in a dry and weary land where no water is, so I have looked upon You in the sanctuary to see Your power and Your glory. 

Because Your loving-kindness is better than life, my lips shall praise You. So will I bless You while I live; I will lift up my hands in Your name. My whole being shall be satisfied as with marrow and fatness; and my mouth shall praise You with joyful lips when I remember You upon my bed and meditate on You in the night watches. For You have been my help, and in the shadow of Your wings will I rejoice.

Whilst Victoria is not having treatment, there continues to be hospital visits for physiotherapy and occupational therapy. During last few appointments we have been told of more physical impacts that are likely to provide significant challenges for Victoria as she grows.  Without going into too much detail, (Victoria herself is not fully aware of this news) this has been very distressing news to receive. 

The day after one of these appointments, when I finally had time to sit with God and process what we had been told, I started to write in my prayer journal. And guess what the scripture in the journal was on that very page that I was writing on .... amidst the tears, this is what I read... But Jesus looked at them and said, With men this is impossible, but all things are possible with God. Matthew 19:26 I read this scripture out aloud, over and over, replacing the words I had heard at the hospital, with the truth of God's word. More tears came through out the day, many fell on the helpful shoulder of a friend! However by the end of the day, God's truth was firmly in my heart, and a smile back on my face.

So coming back to the theme of restoration, we want to see full restoration of Victoria's physical body. Please stand with us as we claim full healing over Victoria's body ... Acts 3:16 states exactly what we want to see .... And His name, through and by faith in His name has made Victoria whom you see and recognize well and strong. [Yes] the faith which is through and by Him [Jesus] has given Victoria this perfect soundness [of body] before all of you.

Being Easter this week, if you want to read more about what was happening in Acts chapter 3 and the healing and restoring power of Jesus, click on this link to my Wendy A God Girl blog. This time of restoration is allowing me to update this blog more regularly now, at least twice a week. If you want to know when I have put up a new post on the God Girl blog, write your email address in the 'Follow by email' box on the right hand side of the screen. You will get an automated email notification when an update is published.

Victoria's next scan is 6th May. Victoria is going to attempt to have the MRI without having a general anesthetic. Please pray that she will be calm and able to stay completely still for the 20 minutes required to do the brain scan. And of course, please pray that the scan will show good results.

Many thanks again for standing with us in prayer and encouraging us along the way. Happy Easter.

29th March 2014

Since my last BLOG entry, Victoria has been on a 2 night Camp Quality Junior Camp at the The Great Aussie Bush Camp and had a fantastic time. Here she is at the end of the camp, with her beautiful companion Naida. We thank God for Camp Quality and all the opportunities they have given Victoria to have fun and try new things. They have made a huge difference to her life and confidence.

We have just had the blessing of 5 days away at Darlington Beach holiday park, about 30kms north of Coffs Harbour, courtesy of the Starlight Children's Foundation and NRMA.

Whilst we were away God reminded me of the importance of being specific with prayer. On Thursday morning, I wrote the following prayer in my journal, 'please help me today to teach our children more about you'. And what ensued during the day was exactly that.

In the morning we drove into Coffs Harbour to do some exploring. We went to a Christian bookshop as I wanted to buy a gift for someone, no other purchases were planned. Whilst in the bookshop two of our children asked if they could have a new bible. We purchased the bibles and they have been reading them reverently since then. One read aloud in the car to us as we were travelling. One has been asking multiple questions about Jesus and the pharisees! Wow, what an answer to prayer! But wait, there is more ....

We asked the children to pick a place that they would like to visit at Coffs Harbour. One child asked to go to the library! No problems, off to the Coffs Harbour library we went. Next to the library is the Coffs Harbour Regional Gallery, so we had a sticky beck in there too. And what did we find .... an exhibition called 'Prayers of a mother'.  If you haven't heard of this exhibition or seen it, please click on this link to find out a bit more about it  'Prayers of a mother - MCA info' This exhibition so resonated with me. It was fascintating to listen to the mother talk about the prayers she offered up for her children and family. And even more fascinating to see the responses in her 8 children's faces as they listened to her!

Accompanying the exhibition was a prayer request table with a difference. A sheer white curtain was hanging on the wall. On the table was a bowl with dried autumn leaves, another bowl with sewing pins, and a couple of pens. We were given the opportunity to write prayer requests on the leaves and pin them to the curtain. 

On May 1st some people from the Coffs Harbour community are going to gather and pray for all these needs. Needless to say, the children and I all wrote on the leaves with various requests and pinned them to the curtain.  Again, this was something that I certainly did not plan for our day!

I thank God for the way He answered such a specific prayer, and that indeed our children were able to learn more about God in two specific ways in one day. Maybe, just maybe the answer came so swiftly because the prayer was about God, not our needs? 

Some of you reading this may think that yes, he answered that prayer, but what about the specific prayer we have been praying for Victoria's healing. Where is the answer to that specific prayer? Good question. Maybe, just maybe, the answer to my holiday prayer came so swiftly because the prayer was about God, not our needs.

I believe that the manifestation of Victoria's healing is on it's way, and what is equally important to God is what is happening during the 'waiting' for the manifestation. 

Three plus years of 'waiting'. Three plus year of learning patience. Three plus years of learning how to trust God more deeply. Three plus years of blessings that can only be found in difficult circumstances. Three plus year of learning of God's unconditional love for us. Three plus years of learning to love God for who He is, not for what we want Him to do. And that is only some of what has happened during the 'waiting'.

Please be encouraged that God is on the job. He is in control. Thank you for continuing to stand with us in prayer.

Rejoice and exult in hope; be steadfast and patient in suffering and tribulation; be constant in prayer. Romans 12:12 (AMP)

Here are some more photos from our holiday. 

Marshall testing out the skate park at Nabiac.

Three sweaty girls after having fun on the jumping pillow

Grey kangaroo and joey

Fun in the pool

Holland Downunder at Coffs Harbour

More Holland Downunder

And more Holland Downunder. A big thank you to Starlight Children's foundation and NRMA for giving us another very memorable break away from the everyday challenges of life.

12th March 2014

Our home became 'movie central' yesterday afternoon as the Starlight Children's Foundation visited us to make a DVD for some upcoming national fundraising events. 

Victoria wasn't phased by the cameras and microphones. She answered all the questions about her hospital experiences, the benefits of the Starlight Express room, and her Wish at the snow, like a pro.

Outside there was continual fiddling with the lighting screens as the sun and wind weren't always co-operative.

Charlotte and Alexandra took turns at taking photos too.

The afternoon of filming finished with

 a concert in the garden.

It was a fun afternoon, and hopefully we gave them enough material to help make a very successful fundraising event. Apparently last year these events raised over 4 million dollars, hence enabling many many children with serious illnesses to have their 'wish' come true.

This morning however reality came rushing through the door. Victoria started crying when she woke up and realized it was sport day today! Her words to me were, "I hate sport day, I always get tipped first. Someone called me 'slow poke' ". 

I stared out the window, holding back the tears, I asked God for wisdom with my words. Thankfully He was quick on the job. My response was something like, 'yes, running fast may not be your gift, but God has given you many other gifts. Do you know anyone else who has had a DVD made about them?'  For a while that placated her, however by the time it was time to get in the car to go to school, the tears had returned.

We have been using the time in the car to learn scripture verses, including this one ...

No test or temptation that comes your way is beyond the course of what other have had to face. All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you come through it. 1 Corinthians 10:13 The Message.

We spent the 15 minute car ride discussing each sentence of this verse. We talked about how at least Victoria can run and join in the games, where as someone in a wheelchair would not be able to join in that way. We talked about the fact that God has put the character inside her to help her face disappointment. We talked about the truth that Jesus is out there on the playing field with her, helping her. She is not alone. I pray that this truth will penetrate deep into her beautiful sweet heart.

Thank you again for standing with us in prayer for Victoria's health and well-being. We would appreciate prayer for her emotions too. It is becoming more and more apparent to us that as she goes through these school years the emotional battle will be just as (if not more) challenging for her. She is more than equipped for it, we know that. She is a conqueror in Jesus Name.

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.