Sunday, December 22, 2013

22nd December 2013

In the crazy lead up time to Christmas, we have been blessed to have a week's time out at the Ronald McDonald Family Retreat at Forster. These cottages, on the riverside, are just beautiful and were made possible by the very generous people and businesses in Forster and surrounding areas. 

We are so very grateful to everyone who has contributed to the establishment and on-going upkeep of this retreat. It has indeed been a place of respite for our family. This break away has been another crucial part in the restoration our family has been experiencing in these past two and a half months since Victoria stopped having treatment. 

One simple example relates to this boat, our Walker Bay dinghy. We have not used this dinghy since the week before Victoria was diagnosed, almost three years ago.

Life has been so hectic and unpredictable in the last three years and neither Ken nor I had the energy or desire to launch and use this boat. Yet now things are so different. We all had a great time using it this week at Smiths Lake, south of Forster. Marshall and Charlotte improved their rowing skills in this magnificent location.

The children have enjoyed hanging out together (well most of the time), without the interruptions of hospital visits for treatment.

Marshall has loved exploring on his Christmas bike, taking time on to reflect on whatever 10 year olds reflect on!

This time off treatment has given Victoria an opportunity to enjoy aspects of her life without being so worn out by the hospital routine, and so physically tired due to low immunity. You can see the difference in her face. Here is a school photo taken in March this year.

And here is a photo taken a couple of week's ago.

And check out the back of her hair!

Now a full head of hair once again. Praise God!

Personally I have used this time to evaluate how I am travelling along this journey. Having made it this far, I felt it was time for some reflection and also some consolidation and preparation regarding the future. 

In terms of reflection, living in survival mode for so long takes a toll on some relationships. Expectations are unmet, often because they are unrealistic! Words are said in moments of high stress, words that never should have been said at any time. Understanding of and empathy for other peoples' worlds is limited as you try to navigate through your own circumstance. Relationships can definitely be a casualty of a crisis. I took the opportunity whilst a way this week to reflect on my relationship with my Dad and how it has been restored over the past couple of months. I wrote down my thoughts and submitted it to ABC Open. If you are interested in reading a story of restoration, please click here.

In terms of preparation for the future, I attended a Carer's workshop last month. The workshop focused on how to look after yourself when you are caring for someone. It split life into 4 areas, spiritual, physical, emotional and social. It looked at ways of building support and resilience in each of these areas. For myself it confirmed that the spiritual aspect of my life had been the key to getting through these last three years. The inner strength I gained from personal devotional time with God each morning. The wisdom God had given me in determining what steps we needed to take as a family each day. The peace and assurance God had given me on the not so bright days. The knowledge that God would provide all that we needed whether that was practical help, emotional support, finance or a holiday! God has definitely been the center of this journey, my Rock, and my refuge. His grace has certainly been sufficient on the days when I forgot that He had it all under control! He has taught me how to be thankful in all circumstances. Hebrews 13:15 sums it up ..

Through Him, therefore let us constantly and at all times offer up to God a sacrifice of praise, which is the fruit of lips that thankfully acknowledge and confess and glorify His name.

This course also reminded me that the physical and social aspects of my life had received very little attention during these past years. So now I am more than making up for that, especially on the social front!

Thank you again to everyone who has helped us in so many different ways during the past year. We are so absolutely grateful to you all and so blessed to have you in our lives. The victory we are witnessing is your victory too. Let us all offer up a prayer of thanks this Christmas to God and His faithfulness. Merry Christmas from the Robinsons.

And the Word (Christ) became flesh (human, incarnate) and tabernacled (fixed His tent of flesh, lived awhile) among us; and we [actually] saw His glory (His honour, His majesty), such glory as an only begotten son receives from his father, full of grace (favour, loving-kindness) and truth. John 1v14 (AMP)

Monday, December 2, 2013

2nd December 2013

Praise God for the very different Christmas experience we are having in 2013. This very day last year, 2012, Victoria was in hospital with a high temperature and we were utterly exhausted in so many ways!

This year we are still utterly exhausted, but for very different reasons! For reasons of celebrating and enjoying life in so many wonderful ways! God is so faithful.

Victoria had the opportunity to help out with the training of some hippotherapists a couple of weekends ago. She couldn't wait to get out there on the horses.

This time she was riding Susy, quite a bit bigger horse than Wedge and Sprinkles. I still marvel at this program and how it makes the exercises so much fun for the children.

Riding in the outdoors arena is always a great experience, especially when are facing backwards! As one of the therapists said to me, this girl is full of spunk!

I sat and watched, and of course cried again, at the kindness and generosity of these people.

And if you are wondering about the physical value of this therapy, well here is a tiny insight into what it can do. Before getting on the horse, the distance from the floor to the Victoria's finger tips when she bent over with her legs straight was 30 centimeters. After the therapy session on the horse, the distance reduced to 20 centimeters!

During this weekend we also celebrated Alexandra's 4th birthday. God reminded me of what a blessing she has been to Victoria. A lot of time in the last three years of Alexandra's 4 years of life have been spent accompany Victoria to therapy sessions, chemo treatments, and many different doctors appointments. She has been an absolute blessing, being the best playmate to help Victoria pass the time. Only a handful of times in those 3 years has she lost patience with the attention Victoria has been receiving, a testament to all the wonderful medical staff we have come into contact with who have included Alexandra where possible, and to Alexandra's maturity well beyond her years. We love you Alexandra Fay!

Last week we had the opportunity to be at Sydney at 7am (yes, left home at 4.15am) to participate in the Starlight Foundation's Christmas party. The early arrival meant the children had the added bonus of being on the Sunrise TV program.  

There were a couple of other families from the Hunter region there too. So the children all had fun hanging out together, racing from ride to ride.

To see the joy on the children's faces, made the early morning start well worth it!

Last night we had the privilege of attending the opening of the Special Olympics in Newcastle. It was again an amazing night, seeing the joy in the athletes faces as they were being celebrated!  Another event to broaden our children's appreciation that we are all different, and we are all God's children, loved unconditionally by Him.

In amongst all these activities too we have attended the Camp Quality Christmas Party. I have said it before and will say it again, I do so love this organisation. Through Camp Quality Marshall and Charlotte have had the opportunity to start building another set of friendships with children they share a unique bond. These children understand the impacts of living with a child having chemotherapy. They understand the impacts of having one parent and their sibling in hospital for nights at a time. They understand the chaos and stress it brings into the family. They also understand the need to make the most of these wonderful opportunities to escape and have fun. Without Camp Quality Marshall and Charlotte would not have had the time and  place to build such an important support network.

So we are definitely making the most of this time with Victoria not having treatment, and a believing for it to be a long time! Last week, God drew me to this scripture, Psalm 91 v 14 and 16. At the weekend, one of my amazing Christian friends encouraged me at the weekend to claim this scripture specifically over Victoria's life, by inserting her name into the scripture. Please stand with us and claim it over Victoria's life as she lives out each day in victory in Jesus Name.

Because Victoria loves me, says the Lord, I will rescue Victoria. I will protect Victoria, for Victoria acknowledges My name. Victoria will call upon Me and I will answer Victoria. I will be with Victoria in trouble. I will deliver Victoria and honour Victoria with long life. I will satisfy Victoria and show Victoria my salvation.

Thank you for standing with us and upholding us in prayer.

Tuesday, November 12, 2013

12th November 2013

We have been enjoying some 'normal' life for the past 2 weeks. Victoria has still had a couple of hospital visits for physiotherapy and occupational therapy. Last week we saw the clown doctors, hence this photo. The therapists advised that Victoria is doing well, although some muscles are tightening, so we now have stretching exercises to do both morning and night. Thankfully the bribe of a mini chocolate santa is working well!

Victoria definitely has a lot more energy now after finishing treatment. She is loving being at school more often, learning and having fun with her friends. Here she is having just the best time at the Festival of Arts day at school.

I am so enjoying this 'mental break' and am only just being to appreciate how much stress I had been under. It is great to have the time and emotional energy to now reconnect with friends in a social setting, rather than in a 'crisis, we need help setting'. We are definitely making the most of these 3 months.

A few months ago I mentioned that I had set up a group, called The Conquerors within the Red Cross blood donation Club Red system. The goal was to have enough donations in the group to potentially save 50 lives by 31st December. We are almost half way there - at 21 lives. So if you have some time between now and Christmas and you are eligible to give blood, why not join The Conquerors and go for it. Click on this link to join The Conquerors. It could be the best Christmas present you give someone this year.

When I was working in the "corporate world" before having children, one of my responsibilities was conducting Post Implementation Reviews (PIRs) on projects with budgets up to $20 million. So I thought it only fitting that I do a PIR on this priceless project, Victoria Grace.

From a statistical point of view, it can be a little confronting as you read the figures. I know for the families that we have met through the hospital these statistics will be not be surprising and that their children will have similar stories, often with many more treatments etc. But for those readers of this blog that haven't had this experience with their children, here is just another reason why these remarkable children should be acknowledged and admired for all they have endured. In Victoria's case, the statistics look like this:

Since January 2011, Victoria has had:

14 General Anesthetics

12 MRIs (scans)

44 Chemotherapy treatments

7 Hospital admissions for high temperatures (Febrile)

8.5 hours of brain surgery

1 portacath insertion operation

1 anaphalatic reaction to chemotherapy drug

And Victoria is only 6 years old.

To see her today, the delightful child that she is, despite all these events in her life, is a testimony to God's grace. She is living out her name, Victoria - victor, conqueror; Grace -favour and blessing. We continue to believe for her complete healing, and know that God has her in His hands. We continue to praise God for all He has done and all He will do.

For He who is almighty has done great things for me - and holy is His name [to be venerated in His purity, majesty and glory]! And His mercy (His compassion and kindness toward the miserable and afflicted) is on those who fear Him with godly reverence, from generation to generation and age to age. Luke 1:49 (AMP)

Tuesday, October 29, 2013

29th October 2013

We met with Victoria's oncologist yesterday who advised that the MRI indicated the tumor is stable. It has not gotten bigger, for which we are very grateful. The chemotherapy has done it's job well, and God has ensured our beautiful daughter has had minimal suffering throughout the last 15 months of treatment. Again, we are very grateful for His goodness and faithfulness.

The plan going forward is watch and wait. Victoria will have another MRI in February 2014, when again the situation will be re-assessed. So for three months at least her body will get a break too, and we can all enjoy the encroaching Christmas holidays without having to be in a hyper-vigilant state.

Thank you again to everyone who has prayed and/or practically supported us over these recent years. I often marvel at the 'shape' our family is in now, given all it as been through, and know that your prayer and support has been absolutely essential to all our well-being. Thank you for being such faithful family and friends.

Despite the circumstances we have faced, we have continually been blessed throughout this time. This weekend our entire family was blessed when we attended a Camp Quality Family Camp at the Great Aussie Bush Camp at Tea Gardens. We all had the opportunity to get out of our comfort zones. 

Victoria and I pushed the boundaries by going on the flying fox. Well at least I did, Victoria was quite calm about it!

The launching platform was quite high! But we did it! (and I certainly screamed the loudest of the group)

It proved little challenge for Marshall ...

and likewise for Charlotte

who both managed to get about 3 goes each!

Next it was on to the mud pit, which I declined to do. But again Marshall, Charlotte and Victoria took up the challenge.

The staff at the Great Aussie Bush Camp were fantastic, helping the children and encouraging them to give everything at try.

Marshall was in 'boy heaven'

Charlotte pushed on through, determined to do whatever Marshall was doing.

Choice - over or under, Marshall chose under ...

Charlotte chose over, sensible girl! 
And Victoria walked around!

Sunday morning proved to be Ken's biggest challenge, a dolphin cruise on the beautiful Port Stephens.

The children took the opportunity to play in the boom net off the side of the boat.

Once again the staff helped Victoria so she could join in the fun too. They were marvelous.

Alexandra had fun watching on the boat. 

Alexandra did challenge herself by doing rock climbing on the Saturday afternoon, and making it up to the 'red line'. 

Unfortunately I didn't get any photos as Camp Quality treated all us parents to an afternoon off at nearby Tea Gardens. It was great to spend time together as a couple and then hang out with other parents that we now have so much in common with! Camp Quality certainly hits the mark 100% when it comes to supporting children and their families. It is organisations like Camp Quality that again have made a huge contribution to helping our family be where we are today. We are so grateful to them and all their supporters.

As I have said many many times before, Jesus is the Rock I stand on, and will continue to stand on as we enjoy the next three months, and prepare for the journey ahead, whatever it may hold. For now, we embrace today.

The Lord is my Rock, my Fortress, and my Deliverer; my God, my keen and firm Strength in Who I will trust and take refuge, my Shield, and the Horn of my salvation, my High Tower. Psalm 18:2 (AMP)

Tuesday, October 22, 2013

22nd October 2013

Thank you to everyone who has been praying for us this past week, including today. Thank you too to everyone who emailed and texted messages of support and encouragement today. They all helped us to get through the day with a smile!

Victoria's MRI was very uneventful today. Everything ran like clockwork. There was even time for a photo with the anesthetist  Peter Armstrong. Victoria's MRI was scheduled earlier than normal, which meant we were home just after 5pm.

It was such a blessing to have mum and my friend Lorna with us today for extra support. Their presence really helped me to keep my mind focused on the moment, rather than running away with unhelpful thoughts.

We continue to believe for a good outcome of this MRI. We know that God has Victoria in His hands. He is in charge, as He reminded me this morning as I read my bible, 'Know, recognize and understand therefore this day and turn your [mind and] heart to it that the Lord is God in the heavens and above and upon the earth beneath; there is no other.' Deuteronomy 4:39

We get the results of the MRI on Monday 28th October.

Friday, October 18, 2013

18th October 2013

Two weeks has passed since Victoria finished chemo. Despite having her temperature climb the day after she finished treatment, thankfully peaking just below the trigger point, Victoria continues to do well. Thank  you for continuing to lift her up in prayer.

The night after treatment finished we had a celebration dinner at home. Based on what I had read in the Growing Great Boys book by Ian Grant, I had 3 questions that I wanted to answer as a family. 

#1. Everyone in the family to share something regarding how well Victoria has met the challenge of 15 months of weekly treatments. 

#2. Victoria to share how each person in the family had helped her during treatment.

#3 Everyone in the family to share something positive that had come from Victoria being unwell.

Needless to say the discussion that came from these questions was very insightful.

Because treatment was stopped earlier than anticipated, Victoria was thrilled to be able to spend the whole day at school with her friends for her birthday. We started the day with breakfast at McDonalds.

These past 2 weeks have been like living in a dream, with no hospital visits for treatment and fewer concerns about illness. Victoria has been able to enjoy 2 weeks uninterrupted at school. At home we have been able to do some jobs that really needed doing with the help of my mum and dad visiting from NZ. 

For me, it has also been a very emotional time, with tears coming anytime, anywhere. The supermarket seems to be a favourite place for them to turn up. The psychologist tells me it is very normal after holding everything together for such a long time, and that I should just let them come out and make sure I get some rest. 

There are a few reasons for the tears. Firstly I get very overwhelmed when I think of the huge number of people who have helped us in so many different ways since January 2011. The kindness and grace people have shown our family is a testimony to God's goodness. Secondly I grieve for Victoria, whilst she has been amazing throughout this time, her childhood is not as it should have been. 

Thirdly, in faith we know Victoria's future is good, however as a mum walking through this daily it is tough. The latest lot of vitamins I am taking are called 'Mums Rescue', how appropriate! I am struggling with the thought of going to the hospital next week for Victoria's three monthly MRI. Thankfully once again God has provided support with my mum being here and friends to come up and help us through that long day.

Thank you again for your faithfulness and prayers. Our main prayer points currently are:
1. Victoria will remain well to have the general anesthetic next Tuesday for the MRI.
2. I will have the emotional strength to do the MRI day well for Victoria's sake.
3. The results of the MRI will be positive.

This morning I gained such encouragement from Deuteronomy 7v9, Know, recognize  and understand therefore that the Lord your God, He is God, the faithful God, Who keeps covenant and steadfast love and mercy with those who love Him and keep His commandments to a thousand generations.  I know that the joy of the Lord will be my strength today (Nehemiah 8v10b).

Thursday, October 3, 2013

3rd October 2013

This morning when I woke up I felt overcome with emotion at the thought of going up to the hospital again for Victoria's treatment. The scripture from my morning devotion was the second part of Matthew 28:20 - I am with you all the days (perpetually, uniformly, and on every occasion), to the [very] close and consummation of the age. Amen (so let it be). These were the exact words I needed to hear, and have placed in my heart.

I was so distraught I could hardly have a conversation on the phone with my wonderful friend who was bringing us dinner tonight. I thought to myself how am I going to do this for another 3 weeks. Eventually I made it to the shower and took some deep breaths, and felt more able to face the day.

Thankfully a friend from church was going to look after the other children today, so it would just be Victoria and I at the hospital today. Once again, I am so grateful for all the support church has provided us with, especially in the last 3 months. 

Finally Victoria and I made it to the hospital. Victoria had her port accessed, and then the doctor nonchalantly said, "This will be the last treatment today and we will re-assess after the scan." I just sat there a bit stunned, that was not the plan last week. All I could think was, Thank you God, you knew this had to be the last day! We had the support of another wonderful friend from church with us at the hospital today. In fact when she arrived, I left her with Victoria and just went off to have a good cry, tears of relief and joy.

Here is Victoria getting ready to have chemo, with one of the very caring nurses that we are again so grateful for. 

A couple of months ago, Victoria had asked if she could have some goldfish when chemo finished. So as soon as chemo was finished today, we picked up Alexandra and Charlotte, and went to the fish shop. Ken and Marshall met us there. What excitement in the shop!

First Victoria picked out the bowl and all the decorations.

Next step was to pick out three fish. Victoria named them immediately: Amy, Emily and Grace.

It was so exciting

Then after a careful drive home, the fish bowl was set up.

 The fish put in, and Victoria gave them their first meal.

What a day it has been, a morning of despair and complete reliance on God to get me through each moment. An afternoon of joy knowing that we have a time ahead of us where we can be 'normal' family again. And joy at seeing Victoria loving her fish.

You may have noticed a pink sign at Victoria's desk, 'This is a Praise God time.' That sign has been up in our house since Victoria was came home from having brain surgery in January 2011. It has been a constant reminder to me that God is in control even when it doesn't feel like He is, and that He has a plan, and it is always right and good. Indeed His plan for today was right and good.

Thank you again to everyone who has helped us in so many different ways. Words really cannot express our gratitude. Please continue to pray for us as we wait for Victoria's scan on 22nd October and results on 28th October.