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).

7th March 2013

A picture of grace ...

 

My word for this week is 'grace'. And the scripture, a favourite

But He said to me, My grace (my favour and loving-kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and show themselves most effective in [your] weakness. Therefore I will all the more gladly glory in my weakness and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may pitch a tent over and dwell) upon me! 2 Corinthians 12:9 (AMP)

God has lovingly poured out his grace on me this past week. It has been filled with many tears. I have gone through another period of grieving the expectations of how our family would be at this time and what we would be doing. Tuesday night this week was the worst, in fact as I was crying myself to sleep I cried out to God, "Enough! Tomorrow is the school athletics carnival and I know Victoria won't be able to do some of the activities, but please let her enjoy the day, and please help me to get through the day without any tears!"

In His graciousness, we had the best day at the carnival. Victoria participated in what she could, and when she couldn't her loving gracious teacher found an alternative way for her to be involved.  Victoria herself showed strength and grace by cheering on her friends in the 100m race, as she watched from the side lines.

Another act of God's grace that I have reflected on this morning, was Charlotte's performance at the carnival. To our surprise she placed in the 400m and 800m race. I felt God say to me this morning, she has the determination and character to go the distance, to run the race of life and run it well. What peace that bought to my heart. His grace really is sufficient for us all!

As for my tears, there was only one moment in the day when I felt the tears well up, whilst talking to one of the beautiful caring school mums. And that was it! I was so thankful that I could maintain a smile for the entire day!

 

These photos are taken from the VIP night at the Newcastle Show last Thursday. The children had a great time on the rides. Marshall enjoyed the more daring rides, whilst the girls enjoyed honing their driving skills.

Although, I am not sure in Alexandra was totally confident in Charlotte's driving ability!

 

What a difference it makes not having to go up to the hospital for treatment this week. We have almost had a doctor/medical visit free week, but not quite!

 

Victoria's legs have been troubling her, so we did go to see the physiotherapist on Tuesday. Victoria's right leg is still tighter than her left leg (although less tight than in January, Praise God), making walking sometimes difficult. She has been unable to wear the right leg night boot due to this stiffness. The physiotherapist made a new night boot for her right leg with less of a stretch than the previous one. Victoria has worn the boot successfully for 2 nights now.

 

I feel for her as I see her wriggling in bed with both boots on, trying to get comfortable. And I wonder, how much more will she have to endure?

Prayer points
 

1. Thank you to God for his amazing grace

2. Please pray that Victoria's leg muscles will continue to stretch and that she will walk using her entire right foot, not just on tippee toes.


For anyone who is interested, I have been re-reading a little book (37 pages) called 'Good Grief' by Granger E. Westberg. I have found it explains the stages of grief very simply. And if you are grieving something, it helps you to know that what you are feeling at a particular point in time is 'normal'.