Friday, March 29, 2013

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.

Thursday, March 21, 2013

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.

Saturday, March 16, 2013

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).

Thursday, March 7, 2013

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'.