Fear, Faith and Fun

As always we have had an eventful few weeks in the Robinson household. On Saturday afternoon it appeared Victoria was getting unwell. As her temperature climbed above 38 degrees, and she still has the portacath in, we knew where we had to go! After a 48 hour stay at John Hunter, Victoria was feeling and looking much better. Even managed to get a spot of teaching done, checking Mummy's maths skills. Victoria got to see all her old friends....

Captain Funkytown, one of the Starlight Captains visited with the balloons and some magic tricks. 

The clown doctors, from The Humour Foundation, visited with more balloons and jokes.

And left Victoria and Poppy with a big smile!

Sister Alexandra and cousin Jade had some fun with Captain Sweetheart, another Starlight Captain, who is a very clever face painter!

Charlotte too lined up for face painting.

A trip to the physiotherapist last week had resulted in the news that Victoria's left calf had started to tighten up again, so a night boot was needed again. When Victoria was feeling better we made a visit to the physio department and a new nightboot was made. One of the pink variety! Please pray that this boot will enable the calf muscle to stretch out.

It has been about 10 months since Victoria has had to go to hospital as a result of a fever. I had even unpacked all our hospital emergency bags. It was very challenging for the siblings to see Victoria in hospital again, connected up to the drip etc. Alexandra made us all laugh when she said to Victoria, watch out for that cord coming out of your bottom!

Thankfully the work we have putting into making them all more domesticated over the past 10 months is starting to pay off, as they did some great breakfast cooking of pancakes and bacon whilst Victoria and I were away. They even bought some pancakes up to hospital for Victoria and I. The next area of domestic learning will be room tidying, putting on the washing machine and hanging out, bringing in, sorting and putting away the washing!

Thank you to everyone who prayed and helped out in some practical way whilst Victoria was in hospital. We all appreciated it.

From an emotional perspective it has been heavy going for me, being back in J1 ward for our daughter, rather than just visiting other people. The whole question of what is God doing was front of mind. We are continuing to trust God for Victoria's healing, but when something like this happens, or when we get a scan result showing stable, but the tumour is still there, giving the threat of another 12 months of chemotherapy,  it is a huge challenge to keep trusting God. I always have to return to the Bible, scouring it for encouragement, and put on some worship music and bath in His presence. On my Wendy, a God Girl blog I have written more about the way God is helping me to be an overcomer in this area. Please click on this link if you want to read more about that. I am choosing to continue to trust God with our precious little girl. 

Answer me quickly, O LORD; my spirit fails. 

Do not hide your face from me or I will be like those who go down to the pit.

Let the morning bring me word of your unfailing love, for I have put my trust in you.

Show me the way I should go, for to you I lift up my soul.

Psalm 143:7-8 NIV

Thank you to everyone who has donated blood and contributed to The Conqueror's goal of 50 lives saved. That goal has been reached! The next goal is 100 lives saved  by 31st December 2014. If you are able to donate blood and haven't yet, please do, as it makes such a tangible difference to lives, including many of the children we have met in hospital.

We have had some fun over the past couple of weeks too, courtesy of a Camp Quality Family Camp at the beautiful Myuna Bay. For us now these Camps are not just about hanging out as a family doing lots of fun activities, but they are also about meeting up again with families we have gotten to know over the past few years and having a good laugh together. All our experiences are slightly different, but many of the emotional challenges we have faced are the same.

Victoria and Alexandra enjoyed the craft table as per usual!

And were very proud of their final creations.

Especially Alexandra.

Victoria lined up for the egg and spoon race.

After numerous races in an effort to win a prize, the toll was beginning to show. Perseverance is just one of the many character traits God has built into this girl. 

Needless to say, she didn't win a prize.

Archery was next on the schedule, with everyone participating.

I think Alexandra wins the prize for the 'most determined' look.

Charlotte showed plenty of style.

After lunch it was time for the giant swing.

All kitted up, Charlotte was ready to swing.

Up, up, up and ...

away!

Marshall too kitted up, and went ..

right to the top,

And enjoyed the view.

It was a fabulous weekend away. Ken and I particularly enjoyed the parents dinner out at the Toronto Yacht Club, whilst the wonderful Camp Quality volunteers looked after all the children! We are very grateful to everyone who donates time and money to this organisation to enable families living with children with cancer to come together and have some fun.

So that is a snap shot of the highs and lows of the Robinson family in the last few weeks. We thank God for the blessings of the fun family times, and for the strength and faith to make it through the not so fun times. He is our Rock.

I love you, O LORD, my strength.

The LORD is my rock, my fortress and my deliverer;

my God is my rock, in whom I take refuge.

He is my shield and the horn of my salvation, my stronghold. Psalm 18:1-2 NIV

Thank you to everyone who continues to pray for Victoria and our family. You are all a blessing to us. Victoria's next scan is 6th August.

Reading, Riding and Remembering

Over the past few weeks Victoria has had the opportunity to participate in the Lake Macquarie Library's BaRK program. BarK - Building Reading confidence for Kids involves reading each week for 15 minutes to a dog, provided by Delta Society, over an 8 week period. The aim is to build children's confidence with reading. 

Victoria has enjoyed reading to Zac, a trained therapy dog. The Delta Society is the group that also provides the therapy dogs that Victoria met during her hospital stays. It never ceases to amaze me the many many ways people are helping others and being so generous with their time, gifts and talents.

Riding continues to be part of Victoria's therapy program too. Last week she had the opportunity to do some grooming with her left hand. 

This week was a little chillier, so had to pull out the warm jackets. Victoria had to navigate some of the natural 'hazards' when riding outside this week.

Alexandra, one of Victoria's most loyal supporters, had some fun in the mud this week at RDA. I praise God that He bought Alexandra into our lives, when we thought with 3 children our family was complete. Alexandra brings so much joy and laughter to our family. She has resilience and maturity well beyond her years. Alexandra Fay you are a blessing to us all! Our Heavenly Father always knows best.

Over the past few weeks I have been participating in a Redkite counselling telegroup, designed to help parents transitioning from having a child on treatment, to moving to a 'new' normal life. As life never returns to how it was before the child's diagnosis. The discussions have been very emotional and encouraging. Emotional, as we talk about what we have been through, the impacts on our children, marriages and families. Encouraging, as we realise how resourceful and resilient we have become. 

For me, these therapy sessions have taken on another aspect too. As Victoria continues to live with the tumour, from a medical perspective, the prospect of more treatment is inevitable. We continue to trust God regarding the necessity and timing of further treatment. However, should further treatment be necessary, these therapy sessions have helped me to evaluate the various strategies we used before and formulate some different strategies should they be needed in the future. 

These Redkite therapy sessions have also reminded me how much closer I have drawn to God over these past three years. I have written a bit about that journey on my latest God Girl blog entry if you are interested in reading more about that, just click on this link.  His word has truly become my life's blood. This scripture sums up where I am today in my walk with Jesus. I hope it encourages you to.

I'll never forget the trouble, the utter lostness,

the taste of ashes, the poison I've swallowed.

I remember it all - oh, how well I remember -

the feeling of hitting the bottom.

But there's one other 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 your faithfulness!

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

He's all I've got left.

GOD proves to be good to the man who passionately waits,

to the woman who diligently seeks.

It's a good thing to quietly hope,

quietly hop for help from GOD.

It's a good thing when you're young

to stick it out through the hard times.

When life is heavy and hard to take,

go off by yourself. Enter the silence.

Bow in prayer. Don't ask questions.

Wait for hope to appear.

Don't run from trouble. Take it full-face.

The "worst" is never the worst.

Lamentations 3:19-30 MSG

Thank you again to everyone who continues to stand with us in prayer and support us in so many practical ways.

Blessings

This week has been filled with blessings! Praise God! On Thursday at school Victoria received her Home Reading Program Bronze Medal for reading 130 books. We are so grateful to the school for the extra help they have given Victoria with her reading, enabling her to catch up on all the school time she missed last year. How blessed Victoria is to be at Belmont Christian College.

Ken and I sat with immense pride at the ceremony, knowing how much effort Victoria herself has put in to doing the extra work. She truly is victorious in every way! Ken's parents were also able to join in this special event.

You may remember a couple of months ago a film crew came to our home and made a video about Victoria's story and the impact of the Starlight Children's Foundation's various programs (The Wish, The Starlight Express Room, the Starlight Captains) has had on her journey. The purpose of the video was to help people at the Starlight Foundation's signature fundraising events, the Five Chefs Dinner, understand the difference their donations can make to a child's life. The Five Chef's cooking at the Sydney dinner included Colin Fassnidge, Matt Moran and Adriano Zumbo!

Ken and I were privileged to be invited to the dinner on Thursday night. Thank you Starlight Foundation for this blessing. It was an amazing experience, starting with me having my hair and make up done. I felt like a princess!

My hair was done by Sloan's, who have an on-going partnership with Starlight, committing to raise money to help grant children's wishes. Thank you so much Georgia for doing an amazing job with my masses of hair!

My make up was done by a makeup artist from, Napoleon Perdis (NP Set). Again I felt like a star.

 I even wore fake eyelashes for the first time in my life - aged 42!!!! What fun.

I had so much fun, and felt so blessed to part of such an amazing night.

Once the hair and make up was done, we were allowed a sneak peek at the Grand Ballroom at the Four Season's Hotel where the event was being held. Almost everything for the event had been donated. Again we are so grateful to the people and businesses that give so readily to make a difference in these children's lives.

The ballroom looked fabulous.

It was a little surreal for Ken and I to see Victoria's photo on the 500 menus and programs at each seat.

The event itself was incredible. Victoria's video evoked many tears and had the desired effect. For anyone wanting to see the video, it will be available after September when all the fundraising dinners have been completed.

We got to meet some wonderful people who generously donated to this cause. It was very humbling to see all these people giving to make a difference for children like Victoria. Thank you, thank you, thank you. And needless to say, the food, all five courses, were sensational!

At the end of the event, Ken received a bottle of wine signed by all the chefs, and I received a bouquet of flowers, Starlight style.

Anyone who has come in contact with Starlight Captains will know they always have balloons and a pump ready to make a creation that brings a smile to children's faces. Well, these flowers and this whole Five Chefs Dinner experience put a huge smile on my face!!!

Ken too has a pretty big grin on his face after an impromptu meeting with Tim Finn in the lift and then having Tim recount the impact of their conversation to all the dinner guests from the stage! Thank you Tim for giving your time and voice to the Starlight Foundation. And for bringing back so many great memories with songs of yesteryear.

Thank you so much to Kerry, Robyn and Jo who so capably looked after our children so Ken and I could spend the night in Sydney and extend this blessing to Friday. We thank God for the many people He has bought into our lives to practically support us in this journey.

So once again God has shown us that there are many blessings amongst the trials and tribulations of life. As it says in Colossians 1:10-12 ...

As you learn more and more how God works, you will learn how to do your work. We pray that you'll have the strength to stick it out over the long haul - not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that he has for us.

Thank you to everyone who has prayed for our family, and continues to pray for our family as we live to get the most from each day, knowing that our Heavenly Father is faithful.

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.