Four and a half years later

For four and a half years ago Victoria had a portacath inserted in her left chest. A little medical device designed to make the intravenous delivery of medicine easier. It has a tube that goes to the tip of the heart to get the medicine into the blood stream as quickly as possible.

For Victoria the portacath was inserted in June 2012 and was used to deliver chemotherapy into her body. Even though she stopped chemotherapy treatment in October 2013, the Oncologist had left it in her body with the view that she could need at least another 12 months, potentially 24 months, of chemotherapy. Praise God that has not been the case, and after the recent scan in November he said it could be removed.

  

So last week that is exactly what happened, the port was removed! 

This time we had coloured caps ... 

 Unlike in June 2012.

And out it came. Victoria wasn't allowed to keep it for News at school. So, thanks to a very accommodating surgeon, a photo was the best we could do. It was the same surgeon who had inserted the portacath 4.5 years ago. He said it was one of the longest times he had known a port to be in. The insertion scar had stretched and thickened, so the surgeon removed that scar too. We are grateful to him for his thoughtfulness, and grateful to God for continuing to show His love for Victoria in so many unique ways.

And so with another huge milestone reached, our life moves onwards and upwards again, so very thankful to God for where we are today. Over the weekend the children participated in Christmas Carols at church. Such a different scenario to Christmas four years ago, when Victoria was on treatment and in & out of hospital each week.

Please pray for those families who find themselves in that circumstance this year. No matter how wonderful the doctors and nurses are (and they are truly wonderful), it is not where you want to be at Christmas time (or any other time). 

This year has been a year of declaring that God is good - no matter what. Sometimes we have made that declaration in faith and expectation, and sometimes in response to what we have seen God do. 

In January our year started with Victoria wanted to have a celebration, declaring victory in Jesus Name, and so we went to the local park with family and friends and celebrated, declaring Ephesians 3:20-21 over Victoria's life.

 Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dream] - to Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it). Ephesians 3:20-21 AMP

Sometimes we have declared that God is good, among pain, waiting on the manifestation of God's healing in her body ... in March and April Victoria experienced great pain in her wrists, ankles and legs. Some mornings she couldn't even get out of bed. This caused distress not only in Victoria, but made mornings very chaotic, impacting on the whole family. At the time a friend said to me, "Wendy, this is the storm before the calm."

Victoria continued swimming despite the pain. After a couple of races in Sydney she said, "Mum, I started to cry half way because of the pain, but I knew I had to keep going." Living up to her name - conqueror. 

Sometimes it has been a case of declaring God is good, in response to what God has done ... in May when we received the scan results indicating that the tumour had reduced in size with no medical intervention.

Last week, declaring God is good for the milestone of having the portacath removed. We are looking forward with great anticipation to what 2017 will bring. It is a new day dawning for the Robinson family, in Jesus Name.

Thank you for continuing to stand with us in prayer throughout this year, and for your encouragement and practical support. We are so grateful that we are not on this journey alone, but rather we are wrapped in love from family, friends, church family and school community, and of course the love of our Heavenly Father.

We pray that during this festive season, celebrating the birth of Jesus, our Saviour, you will come to know more of God's love for you.

For God did not send the Son into the world in order to judge (to reject, to condemn, to pass sentence on) the world, but that the world might find salvation and be made safe and sound through Him. John 3:17 AMP

Stable - Praise God

The scan on Tuesday indicated the tumour is stable. Thank you for upholding Victoria in prayer. God has been so gracious to us. We will continue to believe for complete disintegration, but for now we will be more than content with 'stable.'

Ken asked the oncologist if we could have the next scan in 12 months time. He replied 6 months, but again we are more than content with that, it is much better than 3 or 4 months. And means we can all start 2017 without the normal January/February scan hanging over our heads.

We are so grateful for this outcome, as Victoria continues to thrive in her life, growing in confidence in who she is, and understanding that in Christ she is more than a conqueror.

During the appointment there was some laughter with the comments that at Victoria's 50th birthday party, instead of a display of baby-photos, there would be a display of brain MRIs!

 

Thank you again to everyone who has prayed for her. We are especially grateful for all the staff at school who, over this past week when the anxiety has risen up, have showed her so much love, patience and grace. We are so blessed to be part of the Belmont Christian College community.

From the physical perspective Victoria continues to improve. Earlier this week Victoria had an appointment with her Occupational Therapist. At the end of the session the OT said to me, that when she first started working with Victoria in 2015 she didn't think she would see Victoria improve to the extent that she has, in shoulder and arm range of movement and strength, and fine motor skills with her fingers.  At  Monday's session Victoria reached up with her left arm fully extended and used her left fingers and thumb to pull a small pin out of the pin-board. This is something that she would not have been able to do two years ago. Again we are grateful that Victoria's physical function continues to improve, even almost 6 years later. And we are grateful for the character that God put in her, knowing that she would need to persevere in many areas of her life.

Finally Starlight Children's Foundation approached us a couple of months ago, asking if Victoria would let them use her story again for their Christmas campaign, as they had such a great response two years ago. We asked Victoria if that was okay, explaining that it would mean more children could have their wishes granted. Straight away she said yes. So you may see her around on various promotions. Apparently they are planning to play her story at the lighting of the Christmas Tree in Melbourne. We are praying that people will google her name, read this blog and get the full story.

Thank you again for your prayers and support. It is hard to imaging how it would be doing this journey without it. Thank you. And thank you to our God who never leaves or forsakes us.

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6 NIV

Or, as The Message Bible says,

"Be strong. Take courage. Don't be intimidated. Don't give them a second thought because GOD, your God, is striding ahead of you. He's right there with you. He won't let you down; he won't leave you." Deuteronomy 31:6 The Message

 

 

We choose to trust

Tomorrow Victoria has her scan. Here is a poem I wrote today as I reflected on the emotions that come during the lead up to a scan .....

Ten days out
the sore tummy starts
in the morning before getting out of bed

Tears come too
“I can’t go to school
My head hurts, my tummy hurts.” Nine years old

Big blue eyes
looking up at me
looking for the reassurance I can’t give

“Let’s get up
I’ll help you today
which uniform do you wear to school today?”

“I’m scared Mum,”
I respond, “I know”
Pause, asking for the right words, “We have to trust Him.”

“It’s hard Mum”
I respond, “I know”
I look into her eyes, together we cry

We hug close
I begin to pray,
“Dear Jesus, we’re trusting You for healing here

Only You
Your mercy and grace
Will do what is needed here, please bring your peace

To this child
this beautiful child
who loves You so much, and knows You love her too.

We trust You
Jesus, on this day,
that you won’t leave or forsake her. Amen.

We hug close
precious child of God.
She needs You Lord, please show her Your love today.

One day out
sore tummy again
tomorrow brain MRI at hospital

Six years now
many scans she’s had.
Tomorrow again we choose to trust You Lord.

I want to be an Olympian

Victoria turned 9 a couple of weeks ago.

What a walking testimony of God's grace. 

In this photo she is trying on a 'birthday hat'. 

What a different picture to four years ago.

Although the smile is still the same!

How wonderful it has been to have the blessing of six months between scans. I cannot begin to describe how that increased time has been for our family, other than to say we feel almost like a 'normal' family. 

Since my last blog update in early July, there has been a lot going on. All three girls organised their own Dine at Mine fundraising events. Charlotte's was a breakfast.

 Victoria had a BBQ Lunch.

Alexandra had a morning tea. Together they raised over $700. A big thank you to their friends who came and made generous donations, supporting Camp Quality. 

Our family continues to enjoy, and be very grateful for the  support of Camp Quality. Just the other week we participated in a family Fun Day,  and we definitely had fun.

 

Victoria continues to enjoy the athletics and swimming competitions. Over the past few months she has been to three school athletic competitions in Sydney.  Always with a faithful group of supporters ....

My sister and mother (who just happened in to be in Sydney on this day), supporting Victoria at the Christians Schools State Athletics competition. 

Ken's Mum, Aunt and a friend (who is pretty much an Aunt now!) - each at least 80 years old, supported Victoria at both the Combined Independent Schools State competition and the All Primary Schools State competition. 

 

Victoria won a bronze medal in both the 100m and 200m at the CIS competition. Here is a link to the 200m race. I apologize in advance for my enthusiastic cheering - but I am the mother, and I know first hand what it has taken for Victoria to get to this place. It is a really cheering her on in life, not just this running race. I am getting a bit teary now after just watching that race again.

A week ago, Victoria swam her first 50m freestyle race at the NSW multi-class championships. She won a silver medal for her classification. Charlotte came down to Sydney for the day to help support and encourage Victoria. What a blessing Marshall, Charlotte and Alexandra are to Victoria, and what compassion and understanding God is growing in them. Not only as they watch their sister live her life, but as they see other children who are overcoming the challenges in their lives.

These sporting events have all served as a very welcome distraction as our period of six months until the next scan, comes to an end. Victoria's scan is on 8th November and we will get the results on 10th November. Last week she started to talk about it, about feeling nervous wondering what the results will be. The sore tummy has come back. This morning I had a 'kitchen meeting' with Marshall, Charlotte and Alexandra, doing my best to explain to them what Victoria is going through and asking them to be gracious if she over-reacts to the normal sibling banter. How do you explain that to a six year old? Praying once more that God's grace will be sufficient in all of our lives.

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 trouble manfully]; for my strength and power are made perfect (fulfilled and complete) and show themselves most effective in [your] weakness. Therefore I will all the more gladly glory in my weaknesses 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

There is a beautiful worship song - Find me at the feet of Jesus - by Christy Nockels.  And that is exactly where I will be spending a lot of time during this next 10 days.

As I have mentioned in previous blogs God has been doing a gradual restoration in our family over the past three years, since Victoria stopped chemotherapy.  Over the past couple of months one of the things God has been restoring to me personally has been laughter. Since early September there have been three occasions where I have laughed like I haven't laughed for years - to the point of tears (happy tears) and tummy ache ( a good tummy ache) - a dinner with some friends who have journeyed with us closely over the past six years, our church womens' retreat which I just attended, and in my cousin's butchery. The last place may sound a little strange - but picture this - we had the blessing of using the Harry's House Mobile Home again in September and went visiting my relatives in country NSW.  We visited my cousin's butchery in a small country town. He asked us if the children wanted a tour. Of course they did. Into the freezer room we went. And what squeals of laughter when the children saw ...

... a pigs bottom. And it wasn't a short time of laughter, it continued on and on and on and on and on.

To everything there is a season, and a time for every matter or purpose under heaven .... a time to kill and a time to heal, a time to break down and a time to build up, a time to weep and a time to laugh, a time to mourn and a time to dance.
Ecclesiastes 3:1,3,4 AMP

 

I praise God that I am in a season of laughing. But I am well aware that many are in a season of healing, weeping and mourning. I felt prompted a few months ago by the Holy Spirit to start another blog called - Requiring His Presence It is for people in those seasons, who do not have the energy to pick up their bible, who are exhausted by the crisis they are currently in. It has a simple daily post with a word of encouragement, one or two scriptures and a link to a worship song. My pray is that reading the words, scripture and listening to the song will encourage you to keep seeking God's presence despite the circumstances.

Thank you for continuing to stand with us in believing for full healing and physical restoration in Victoria's life. After the Olympics had finished, Victoria said, 'I know I can be a para-Olympian, but I want to be an Olympian.' And I believe by Jesus healing power she can be.

Now to Him who is able to exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen. Ephesians 3:20-21 NKJV

 

 

 

Power of prayer

We felt like we'd been sent to death row, that is was all over for us. As it turned out, it was the best thing that could have happened.

Instead of trusting in our own strength or wits to get out of it, we were forced to trust God totally - not a bad idea since he's the God who raises the dead! And he did it, rescued us from certain doom. And he'll do it again, rescuing us as many times as we need rescuing. 

You and your prayers are part of that rescue operation - I don't want you in the dark about that either. I can see your faces even now, lifted in praise for God's deliverance of us, a rescue in which your prayers played such a crucial part. 2 Corinthians 1:9-11 The Message

This scripture so aptly describes what we have experienced over the past 5.5 years. The doctors, as wonderful and caring as they have been had no long-term answers for Victoria. We were and are forced to trust God totally.  

This scripture also importantly describes the importance of every prayer that you have ever prayed for Victoria. Please don't ever think that they haven't made a difference. It is exactly as this scripture says - they have played a crucial part. Thank you. And here is a thank you from Victoria, please click here to watch the video.

Victoria continues to enjoy swimming competitions, broadening her abilities by now competing in backstroke and freestyle as well as breaststroke. The photo above shows the joy she had when she finished her first backstroke race. 

As normal it continues to be a family affair. Charlotte took on the role of coach this time, helping Victoria with the start of her backstroke race.

One of Victoria's school friends supported Victoria at this swimming carnival. Victoria has been blessed with a beautiful caring and encouraging group of friends. We are grateful for every on of them.

These swimming and athletics days do take a toll on Victoria's body - they actually absolutely exhaust her. We are slowly learning how to manage the next day muscle pain with heat packs, hot baths and some rest.

The regular arm, hand and leg therapy continues. Making chocolate chip cookies is always a favourite bi-lateral arms and hands activity. Thank you to the girls who come ready and willing each day to help Victoria improve her arm and leg functionality.

When we received the news of Victoria's scan in May I knew there would be some things I would have to process after 5.5 years of trusting that God's healing power would manifest in Victoria. So I asked God to show me what to start with. He said, "Let yourself dream again." 

Upon hearing this from God I realised that since January 2011 when I heard the neurologist's words and our world was shattered, I had stopped dreaming of good futures for our children, our marriage and myself. Through the fear of disappointment, I had slowly slipped subconsciously into this default mode of thinking 'our life is hard, but God will get us through.' I had essentially reduced our 'world' to always being like our current circumstances. 

"Okay God, show me how to dream again," I prayed.

For a few weeks after this various sermons I listened to at church or on CD were all making mention of dreams. Without me talking to anyone about this friends gave me gifts that related to dreaming. One was a beautiful prayer box, that already has seven specific big dreams in it for myself, our marriage and our family. It is so exciting - watch this space!!!!!

Thank you again for standing with our family and continuing to pray for Victoria. The key prayer needs are
1. That Victoria will know that she is loved by God
2. Complete disintegration of the tumour
3. Complete restoration of left arm, hand, leg and foot

I life up my eyes to the mountains - 

where does my help come from?

My help comes from the LORD, 

the Maker of heaven and earth.

He will not let your foot slip -
he who watches over you will not slumber;

indeed, he who watches over Israel
will neither slumber nor sleep.

The LORD watches over you -
the LORD is your shade at your right hand;

the sun will not harm you by day,
nor the moon by night.

The LORD will keep you from all harm -
he will watch over your life;

the LORD will watch over your coming and going both now and forever. 

Psalm 121 NIV

Mercy and victory

This is Victoria getting ready for her 21st scan. 

She was excited and fully expectant for a good result.

And she was not disappointed.

The scan showed that the tumour was smaller than the September 2015 scan. This reduction in size was not due to any medical intervention. It was simply the hand of God - His mercy on Victoria's life.

Surely or only goodness, mercy, and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place. Psalm 23:6 AMP

We are both overjoyed and overwhelmed with this result. Thank you Jesus for your healing power. 

Following on from reviewing the scans two other decisions were made... 

After five years of have mostly quarterly scans, the next scan will be in six months time. For anyone who has been on this journey, you will know exactly what that means. It means six months free of thinking about scans and results. It means six months for Victoria to have a more 'normal' life, something she hasn't had for five years! It means six months of breathing space for us a family, allowing each of us time to more fully live our lives. Praise God!

Secondly, the portacath, which is being accessed in the above picture, will be taken out. This is an access point, under Victoria's skin, connected to a tube going into the top of her heart.  Praise God it has worked perfectly for almost four years. But now it is no longer required, in Jesus Name.

Thank you to everyone who has prayed so faithfully over the past five years, standing, believing that our God is able and willing to heal, and that He still heals today. We believe this is only the beginning of the manifestation of healing in Victoria - the best is yet to come, with complete disintegration of the tumour, and complete restoration of her left arm, hand, leg and foot. None of this is impossible for our God.

For with God nothing is ever impossible and no word from God shall be without power or impossible of fulfillment. Luke 1:37 AMP

We are so grateful to everyone who has stood with us, in prayer, and also practically. Thank you for being such a blessing to each of us. As you may have gathered from my previous posts this year, Term 1 was particularly challenging for Victoria with various muscle issues and pain. The Year 12 students at school have come alongside Victoria this year. They have been encouraging her, reminding her that she is loved. 

And not only have they done this for Victoria, but they have also included her whole class, who have lovingly prayed and supported her since Prep, by arranging a lunchtime bbq and games for the class. 

But what they, a group of 17 and 18 year old, did for us, as a family, this week, really blew us all away. It reminded me that despite what we watch on TV about the youth of this generation, there are youth who love, who know they have a purpose and who want to do good and bless others. 

On Wednesday when I picked Victoria up at school to go for the scan, there at the office for me was a beautiful bunch of flowers, a CD, and a little brown box. The little brown box was actually for Ken and I. There was also a parcel for Marshall at the office, with some of his favourite food, and a little brown box. When I found Victoria in the playground, she had three big helium balloons, and a little brown box. As we walked through the play ground, at least 20 children came up to Victoria and wished her well with the scan - 'the 21st scan' as she called it.

When we got to the car, Victoria opened her little brown box.

And inside were hand-written notes (including a beautiful sketch) to Victoria from each of the Year 12 students. She started to read them out aloud - what affirmation and love in those notes. So I opened our box and read the top one of the hand-written notes to Ken and I - only managed to read one and the tears started to come - so put them on the seat for later in the day. What a wonderful act of kindness. That Wednesday night after the scan, around the dinner table, we all sat there with our little brown boxes, including Charlotte and Alexandra with theirs too, and shared some of what had been written to each of us. How blessed we all felt.

Reading these notes, and seeing all of Victoria's friends wishing her well as she went off to the scan, made me think of something I read while sitting beside Victoria in the MRI machine. It was from a book called, 'God's Word Heals' by Derek Prince. There was a transcript from one of the his Healing Services ....

'Now, the more people who witness from close quarters, the better pleased I am. I particularly enjoy having children there. I've had children with their noses about half an inch from somebody's heel when it grew out, because I reckon that when a child sees a few legs grow out, it doesn't matter what the anyone (sic) says, that child will know forever there's a God.' (page 240 - 241)

I realise for some of you reading this post that will sound a bit 'out there', but as I read it in the MRI room, it reasonated with me. I could see all those children - junior school, and the youth in year 12, praying for Victoria, believing for her healing. And now, with the results this week, they can see what our God can do.

Victoria was adamant that she wanted to share the news with the students and teachers after the scan, asking me when I was texting, "Who are you texting Mum? I want to tell my friends". And so she did tell them, after all, this is her story of what God is doing in her life. More and more it is a testimony of her relationship with God and what He is doing in and through her. 

Thank you again for standing with us in prayer and in so many practical ways. Please continue to pray for complete healing in Victoria's brain and body, as we continue to choose to stick with God and His ways.

But me, I'm not giving up.

I'm sticking around to see what GOD will do.

I'm waiting for God to make things right.

I'm counting on God to listen to me.

Micah 7:7 The Message