21st May 2013

 

Yesterday we got a sniff of another victory regarding Victoria's health and well-being! Praise the Lord. In December last year at an appointment with Vision Australia, I asked if Victoria's loss of left field vision was permanent. The response took a while to come and was very considered, "You will have to ask the Ophthalmic surgeon that question."

 

Well, yesterday we had an appointment with the Ophthalmic surgeon. He conducted various tests on Victoria's eyes, and then said, "Her sight has potentially improved." I didn't have to ask THAT question.

 

I nearly fell off my chair, and I asked him, "Do you mean she can now see more things on the left?" He replied that, "some re-learning is possible in children, their brain can restore this function, unlike adults."

 

I give praise to our wonderful creator for the way He has created this amazing body we inhabit. Please pray that Victoria's left field vision will continue to improve until it is fully restored.

 

The doctor also observed, as have the hippotherapy people, that Victoria is compensating for the remaining loss by moving her eyes more, naturally scanning more to the left.

We choose to believe that we will see many more physical victories for Victoria, and we choose to continue to claim 2 Timothy 4v18 over her life ...[And indeed] the Lord will certainly deliver and draw me to Himself from every assault of evil. He will preserve and bring me safe unto His heavenly kingdom. To Him be the glory forever and ever. Amen

  

16th May 2013

Victoria is loving the hippotherapy and enjoying riding on Wedge. Here she is getting ready to give him a kiss! If you would like to know a bit more about hippotherapy, check out this website: Hippotherapy YouTube video.

 

Victoria has been well enough to have chemotherapy both last week and this week. Even though her neutrophils are a bit low, she was allowed to attend a school excursion today to Oakvale Farm and had a great day.

 

Please pray that Victoria continues to be well, despite the flu season commencing.

 

A couple of weeks ago when we were having a session with the psychologist in the paediatric oncology department, I noticed this poem by Dorothy Law Nolte on the wall. You may have read this poem before, but I had not seen it before, and thought it was worth sharing.

 

Children learn what they live

If a child lives with criticism,

he learns to condemn.

If a child lives with hostility,

he learns to fight.

If a child lives with fear,

he learns to be apprehensive.

If a child lives with pity,

he learns to feel sorry for  himself.

If a child lives with ridicule,

he learns to be shy.

If a child lives with jealousy,

he learns what envy is.

If a child lives with shame,

he learns to feel guilty.

If a child lives with encouragement,

he learns to be confident.

If a child lives with tolerance,

he learns to be patient.

If a child lives with praise,

he learns to be appreciative.

If a child lives with acceptance,

he learns to love.

If a child lives with approval,

he learns to like himself,

If a child lives with recognition,

he learns that it is good to have a goal.

If a child lives with sharing,

he learns about generosity.

If a child lives with honesty and fairness,

he learns what truth and justice are.

If a child lives with security,

he learns to have faith in himself and in those about him.

If a child lives with friendliness,

he learns that the world is a nice place in which to live.

If you live with serenity,

your child will live with peace of mind

With what is your child living?

 

That poem is very thought-provoking, and certainly prompted me to think about some of the less than desirable behaviours I sometimes demonstrate to our children!

 

And whilst I know I am very much less than perfect, I thank God for His grace that is readily available to us as parents, and know that this scripture is true for our lives ...

 

And the grace (unmerited favour and blessing) of our Lord (actually) flowed out superabundantly and beyond measure for me, accompanied by faith and love that are (to be realised) in Christ Jesus. 1 Timothy 12 v14 (AMP)

 

Thank you again for your continued prayers, support and encouragement. It is hard to believe that Victoria has now completed 45 weeks of treatment! We thank God that he has our precious daughter in the palm of His hand.

7th May 2013

On Sunday Victoria gave me a stark reminder of the thoughts that are in her head and that all she has had to cope with, especially during the chemotherapy treatment. She was sitting in the kitchen, holding her dolly Sophie. There was a pile of Sophie's hair on the floor. I inquired as to why she had cut Sophie's hair. The response was, 'Now she looks like me'.

I turned away as I felt the tears start to come. Wow, because Victoria is coping so well, it is easy to forget that she still has to face many things each day, such as the fact that all the girls around her, including me, her sisters and friends have long hair. Whilst her hair is growing, for which we are very grateful to God, on Monday morning before school, Victoria informed me that it wasn't growing fast enough!

 

Please pray that Victoria will have patience as she waits for her hair to grow and continues to live with the left side weakness.

Friday morning was the first session of hippotherapy. What a wonderful way to finish the week, seeing Victoria so enjoying herself, surrounding by such loving, caring people, all working together to help her.

Victoria herself was thrilled to be there again, and couldn't wait to give Wedge a pat.

 

Please continue to pray that she will be able to attend each hippotherapy session and that there will be improvements in her walking.

The rest of today's blog entry it a photo essay of the awesome day we had on Sunday at Stockton Beach. The day is organised by Camp Quality, with everything (cars, lunch, sand boarding etc) provided by local four wheel driving clubs. We all had a fantastic day. A special thanks to Chris and Ken Hall who made arrangements so we could all travel in their car together, rather than being split by 2 cars. It was a very memorable day!

 

 

 Marshall starts the day off with a tree climb, whilst we wait for the car to be set up.

 

 

Ken and Chris had tea and coffee on hand when we stopped for a break at the Sigma wreck.

 

 

Alexandra strikes a pose in front of the Sigma.

 

 

Victoria does some digging on the beautiful Stockton beach.

 

 

The next stop was one of the lagoons back in the sand-dunes, part of the Worimi conservation lands.

 

 

A member of the Worimi mob gave a talk about various things made from the bush, bush food and playing the didgeridoo.

 

 

Marshall volunteered to try some bush tucker. When asked what it tasted like, he tactfully said, "Mum's cooking."

 

 

 

After lunch it was time for some sand-boarding. Marshall and Alexandra teamed up.

 

 

And down they went!

 

 

Charlotte and Victoria teamed up.

 

 

And off they went, Charlotte had the breaks on!

 

 

Then there was the mighty climb back up the dune!

 

 

Marshall finished the day with one final leap off the dune!

 

We had a great family day, out enjoying this magnificent country we are so blessed to live in. We are so blessed to be part of an organisation like Camp Quality, who know exactly what families in our situation need to help make it through each day.

 

 

Please pray that Victoria will continue to be well despite the chemotherapy treatment, and that her immunity will remain high. And most importantly that she will know the truth of this scripture, no matter where she is or who she is with, "Have I not commanded you? Be strong, vigorous, and very courageous. Be not afraid, neither be dismayed, for the Lord your God is with you wherever you go." 1 Joshua 1v9

 

 

 

 

28th April 2013

We continue to thank God for the news we received last week. Victoria looks and is so well, despite the weekly chemotherapy regime.

 

This week I wanted to say a big thank you to everyone, especially our extended families who have supported us tremendously since Victoria was first diagnosed in January 2011.  Our parents and siblings have given so much to us in so many ways. Without them we would be in a very different 'place' than we are today. They have shown us unconditional love and grace as our emotions have roller-coasted. We thank God for the blessing they are to us.

 

 

Victoria has once again been given the opportunity to do Hippotherapy at the Riding for the Disabled centre at Raymond Terrace. Victoria had an assessment there last Tuesday, and afterwards we had a picnic in the sensory garden. Alexandra enjoyed the tea cups in the garden.

 

 

Victoria's attendance at the weekly sessions is contingent on her platelet levels being high enough. This will be determined by the blood tests she has for chemotherapy each week. We pray that she will be able to attend each of the 7 sessions.

 

God has taught me and continues to teach me many things on this journey.  One big concept I am only starting to get a handle on is that God really does have it all under control. I say it, I write it, I believe it - sometimes. But "sometimes" is not enough. I need to believe it "all the time". 

 

I am claiming this truth from Genesis 15v1 over our lives, "After these things the word of [Jehovah] came unto Abram in a vision, saying, Fear not, Abram: I am thy shield, and thy exceeding great reward."

 

To this end, I have written a chronological list of the promises and scriptures God has given me personally since I became a Christian in 1996, and a list of the significant events where God has been evident in my life. I have pasted this list into the beginning of my journal, so whenever that ugly fear rises up, I will turn to it and remind myself of the promises God has given me, and that God my shield is there protecting me and my family.

 

Now, on a lighter note, a question - what do you do when you child is hungry and thirst and can't have anything to eat or drink because they are waiting to have a general anaesthetic and MRI?

 

Answer: give them your camera to play with......

 

 

... all is good, waiting, waiting ...

 

 

... now Mummy's getting tired of waiting ....

 

 

... so she has a nap.

 

I think all that waiting is one of the reasons' Mummies get bravery beads too!

 

 

18th April 2013

How great is our God, sing with me how great is our God!
 

The MRI Report today indicated that the tumour has shrunk by 20%.

 

On Tuesday the physiotherapist advised that the range in Victoria's ankles were back to normal. Victoria will need to continue wearing the night boots, but there will be no need to take steps to get a day splint for her right leg.

 

Thank you for continuing to uphold Victoria and our family in prayer. Our God is faithful, all the praise and glory to Him.

 

Due to this great result, the weekly chemotherapy treatment may be extended another 3 months to October.

 

Please pray that throughout this time we will continue to "set our minds and keep them set on what is above (the higher things), not on the things that are on earth." (AMP) Colossians 3:2. And that Victoria will continue to cope so wonderfully with the treatment, in Jesus name.

 

What to do now? Lunch and clean out the kitchen cupboards - what else would you do after such fantastic news!

15th April 2013

 

Charlotte and Victoria returned from Camp Quality Junior Camp at Point Wolstoncroft, Lake Macquarie late yesterday afternoon. They had an awesome time and were so well looked after by their companions, pictured with them. We are so grateful to Camp Quality and the opportunities and fun they give us all. Whilst the girls were canoeing, disco dancing and doing lots of craft, we were enjoying 2 days of being a family of four! The house was so quiet and tidy!

 

 

The camp was a great way to start the school holidays, and a week that will be consumed by hospital visits, Tuesday (MRI and physio), Wednesday (OT) and Thursday (Chemo and scan results). It is never dull here.

 

We continue to believe for a good result from the scan. Physically looking at Victoria there is nothing to indicate that there has been any major growth in the tumour.

 

Prayer points

1. Victoria will be well enough to have the general anaesthetic tomorrow for the MRI

2. We will remain in God's peace as we wait for the MRI results and hear the results.

3. Victoria will continue to strengthen physically

 

Many thanks again for your continued prayers and support as we continue to chose to trust God with our daughter.

 

Some food for thought from a book I am reading, Names of God, by Nathan Stone.  In fact I have been stuck on this page (58) for a couple of weeks!!!

"It is in this connection that another aspect of the name El-Shaddai, as the One who fills and makes fruitful, appears. We have already seen that to experience God's sufficiency one must realise one's own insufficiency. To experience God's fullness one must empty self. It is not easy to empty self. It was never easy to do that. The less empty of self we are, the less of blessing God can pour into us; the more of pride and self-sufficiency, the less fruit we can bear. Sometimes chastening can make us realize this. Thus it is that the name Almighty God or El-Shaddai is used in connection with judging, chastening, purging. ..... And as in the case of Naomi, is it not also true of Job that even this "perfect and upright" man was made more upright or whole through sufferings; that he was purged, through chastening, of some imperfections that hindered his fullest blessing and fruitfulness, that this chastening emptied him so completely of self that he could be "filled to the measure of all the fullness of God"? (Ephesians 3:19). He understood this in the day when he said: "Now my eyes have seen you. Therefore I despise myself and repent in dust and ashes" (Job 42:5-6). Then he received power with God to intercede for his friends, and he was filled with double blessings."

 

From on-going personal experience, moving from the Super Miss self-sufficient I was 18 years ago, to the person God is continuingly moulding me into today, I totally agree with Stone, that "It is not easy to empty self". However, with everything we have gone through, I would much prefer to be the person I am now, than that person 18 years ago. Thank you  Heavenly Father, Jesus and Holy Spirit.

 

How great is the love the Father has lavished on us, that we should be called children of God! 1 John 3:1a

9th April 2013

 

Victoria enjoyed a great morning at school last week, at the Kings and Queens' morning. Although with this home-made crown, Marshall wondered if she was going to audition for the role of Pope!

 

 

 

Unfortunately, Victoria couldn't get to stay the whole day at school as she had an infection on her leg which needed hospital attention (so we didn't get to have a hospital-free week). One bonus during the hospital visit, was that Victoria got the opportunity to meet a special dog that was bought into hospital to add some joy to the children's day.

 

 

On Friday at school Victoria gave a presentation to her class, taking them on a journey into her other world, the hospital. Victoria told the class about her Wednesday hospital activities. She also explained to her class how they could help her out physically at school. I was so proud of Victoria, especially when she explained to her class how it was helpful if they walked on her left side so she didn't bump into things, and if they didn't know which was her left side, they just had to look at which leg had the splint on. She is such a brave and courageous child.  

 

 

'You live from scan to scan.'

 

These were some of the first words I heard from a parent with a child living with cancer, when Victoria was diagnosed. At the time I heard these words I really had no idea what they meant.

 

After Victoria had had a few scans I understood what these words meant. When I gained that understanding, I started living from 'scan to scan'. I would find myself getting more and more anxious as the scan date drew closer, and even more nervous as we waited the week or so after the scan to find out what the results were. Then once, we knew the results, I would relax into 'normal life' for a couple of months, before starting on the anxiety treadmill again. And so the cycle repeated itself every 3 months for the past 2 years. This was not an emotionally healthy cycle for me.

 

Now I find myself with a different understanding, thanks to a scripture I read last week from The Message bible. In Ephesians 2 v1b, it says, 'You let the world, which doesn't know the first thing about living, tell you how to live'. 

 

For a few days I meditated on this verse, before I began to fully understand what God was trying to say to me. I had the revelation that God wants me to live each day in His rest, regardless of what is happening on that day, regardless of what is spoken to me that day, and regardless of how I feel on that day. Now that is a big ask given our circumstances, but I fully believe that God can help me get to the point where I can live each day like that, and no longer live 'from scan to scan'.  I would appreciate your prayers as I pursue God's perfect rest, peace and joy for every day.

Victoria and Charlotte are off to a Camp Quality camp this weekend, so could you please pray for complete health for both girls in the next few days and during the camp. It is such a wonderful opportunity for them both.

Many thanks for your wonderful on-going support in so many ways.