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.  

29 March 2013

This past week has been a time of reflection. Prior to Victoria's diagnosis I didn't think much about Heaven. I lived gladly with the knowledge, that accepting Jesus as my Lord and Saviour meant, among other things, I had the assurance that Heaven is where I will spend eternity.

 

Since Victoria's diagnosis, at various times, thoughts of Heaven have been at the forefront of my mind. It is not that I don't believe that God can perform miracles, I do believe that. But I also know that God is sovereign.

 

I don't want our children to fear death. I want them to know that Heaven is a beautiful place where everything is perfect. To help them with that understanding, I have bought the book Heaven is for real for kids and have read it with our eldest child. He has an enquiring mind and is now listening to the audio book of the full version.

 

One of the things we know for sure about our life as a Christian is that Heaven is our destination at some point in time. I don't want our children to be afraid of that truth.

 

Victoria was able to have chemotherapy this week. No infections, all good. We had a session with the occupational therapist who has given us exercises to start training Victoria to scan to the left when moving around. Next week is a week off treatment.

 

On a completely different note, for anyone who enjoys contemporary worship, here is a song that for me is like stepping into a refreshing shower, You Revive Me, sung by Christy Nockels, from the White Flag album by Passion. I can highly recommend sitting quietly and letting the words flow over you into your heart. Let Jesus revive you this Easter weekend.

 

 

21 March 2013

Victoria was well enough to have chemo yesterday, despite her neutrophils being on the low side. Praise God. The infection in her arm has almost cleared up. Again we are thankful that it did not spread.

We were able to visit the Starlight Express room whilst waiting for the blood results. One Captain Starlight was doing face painting. Alexandra gladly put her hand up.

 

The Starlight Express room craft for the morning involved pipe cleaners, beads and calico bags. For the super-crafty you could have a go a poking the pipe cleaners through the calico and adding beads to make beautiful patterns.

 

 

We chose to stick with slightly simpler things. My sister, visting from New Zealand made some butterflies and spiders.

 

 

I helped Victoria make a necklace, which she is modelling. Note that dolly came with us to the hospital this trip, as she had the 'vomits during the night.'

 

Emotionally this week everyone is travelling pretty well, thank you for your prayer covering.

 

Last week whilst we were away I listened to a podcast from a wonderful friend from Sydney. It is well worth a listen if you are wondering if God has what it takes. It helped me to examine my thoughts and get them lined up with what God's truth is.

 

As draw closer to another scan, God's word continues to a marvellous comfort ...

 

"Asa cried to the Lord his God, O Lord, there is none besides You to help, and it makes no difference to You whether the one You help is mighty or powerless. Help us, O Lord our God! For we rely on You and we go against this multitude in Your name. O Lord, You are our God; let no man prevail against you." 2 Chronicles 14:11 (AMP)

 

Many many thanks again for the continued prayer and practical support. You are a blessing, in Jesus Name.

 

15 March 2013

God's blessing and favour is on us despite our circumstances. We have just had 4 nights away courtesy of the Starlight Children's foundation and NRMA Ocean Beach Holiday Park. These organisations really understand the value of families "getting away" just to  be a family having fun.

It was an absolute joy to have so much time just to 'be' with our children and marvel at how resilient they are. And how loving and caring they can be towards each other most of the time! Riding in the buggies was a display of this, as Marshall drove Victoria and Charlotte drove Alexandra.

Victoria and Alexandra thought that they would have ago together,. They didn't get to go anywhere, their legs weren't quite long enough.

 

As the four of them road down the path together, I wanted to yell out, "God is good, these children are a testimony of His goodness." 

This morning God gave me this scripture in relation to our children,  God is with them, and they're with him, shouting praises to their King. God bought them out of Egypt rampaging like a wild ox. Numbers 23:21-22. I am standing on that verse.

 

Wednesday of course Victoria had chemotherapy back at the John Hunter Hospital. As we drove there from the Central Coast, it made me think about those families who have to drive that distance of further each week once or twice for treatment. I again thanked God that we were living in close proximity to a hospital able to provide the treatment Victoria needed when she was first diagnosed.

It was very quiet in the Day Unit, we were the only ones there. The children were able to make themselves at home! Victoria was well enough to have chemotherapy this week. The doctors were concerned about an infection in her arm. Thankfully after prayer and antibiotics, when we returned for to the hospital for a check up yesterday, the infection appeared to be going.

Changing treatment day to Wednesday has many advantages, including easier access to the psychologist assigned to the paediatric oncology department. The topic of conversation this week was Victoria's adjustment to moving from the safe environments of home, hospital and prep into the big wide world of school.

 

An insight into how Victoria currently views herself came from this conversation at the camp ground. We were sitting next to a father and his son. We were putting on Victoria's socks, splint and shoes, when Victoria volunteered this information to the father,  "This is my splint. It helps me walk better. I feel weird because I have a splint." Thankfully the gracious father responded by saying, "It is just part of you."

Please pray for us as we help Victoria to understand that she is not weird, she is just different and that is ok.  And more importantly that she will believe that her heavenly father says she is "wonderfully and fearfully made". Psalm 139:14

Once again I thank God for this time away, as these sorts of conversations and valuable insights don't happen in the hub-bub of normal life, or can easily be missed in the 'circus' that is the Robinson household.

This last photo is a testimony of the healing that is happening in Victoria's body. The strength in her legs continues to increase as she runs and jumps effortlessly up and down the jumping pillow. Freedom!

Prayer Points
1. Victoria will know in her heart that she is fearfully and wonderfully made.
2. The infection will continue to disappear
3. Peace to reign in our hearts as the next scan draws closer (16th April).