Grateful Hearts

Thank you to everyone who has been praying for Victoria. The MRI results showed that the tumour is stable. Thank you Jesus. What an awesome Christmas present.

The pre-scan anxiety we have previously seen did not appear until the night before the scan, when we were at church. Thank you to those at church who helped her work through those fears. Monday morning she was fine again, although obviously it was still on her mind, as she spent some time watching some videoes from the series 'I can't go to school today'. Victoria found these videos a few months ago on the ABC TV Education site.

I Can’t Go To School Today is a series of animated documentaries exploring the experiences of children living with different illnesses and conditions. Each film tells of the experiences of a young person whose life is markedly different from their peers, and who have all taken time off school because of their illness.

The series includes a video about children diagnosed with Leukemia, Epilepsy and HIV+. Victoria relates to these videos very well, particularly when the children talk about the masks they wear to hide their real feelings. We have found these videos to be a great resource for starting conversations about Victoria's own feelings.

On Monday, as we were walking to the hospital carpark after the scan, a group of people walked past us. After they had walked by, Victoria whispered to me, "I just let them stare Mum, just like the sister said in the movie, 'If they stare, let them stare'."

They were staring at her splint, and the movie she was talking about was Wonder. Last week we went to see it as a family. We all had moments of tears, and actually I pretty much cried the whole way through it. There was another line from that movie that Victoria has taken hold of too - Don't blend in when you were born to stand out.

We are grateful for the people who have taken the time to make these series/movies, as they do provide another avenue for discussion and increase awareness of other people's experiences.

Another Mum we had met during Victoria's first couple of days in hospital in 2011, gave me this beautiful gift yesterday. It comes from an organisation called Mumcology.org.

I had not heard of the organisation before, but when I googled it, this is what I found ...

What Is Momcology?
There is an increasing population of parents in the world going through chemotherapy. They are in the fight of their lives. They know the exact names of the drugs, how to spell them, their dosages, interactions, side effects and long-term complications…although, these parents have never been diagnosed with cancer themselves…their children have.
These parents are caretakers, nurses, nutritionists, physical therapists, inventors, world-class entertainers, teachers, philanthropists, psychologists and advocates every single second of their lives after the moment they hear the words, “your child has cancer.”

Worldwide, every 2 minutes, a child is diagnosed with cancer and another family is left devastated. 



When I watched the movie Wonder, one of the reasons for my tears, was not only the impact on Victoria's life,  her siblings and our marriage, but the impact on me - the mum. The hours and hours and hours that have gone into doing all those things listed above, plus of course, praying and petitioning God for His grace and mercy in Victoria's life. It has been something that I did not anticipate that my life would include. I am so grateful that we still have Victoria with us, as I know that is not the case for many families. But being completely honest, there have been moments of resentment, when I think about the other things that I and we as a family, could have been doing for the past 7 years, rather than hours at hospital, doing therapies and coping with the emotional outfall of it all. 

But then, by the grace of God, I lift my eyes to Jesus, and He helps me to see what He has been doing in us in the past 7 years. I can see, through the tears, that He has been drawing us closer to Him, helping us to start to understand that His ways are higher ....

For My thoughts are not your thoughts, neither are your ways My ways, says the Lord. For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts. Isaiah 55:8-9

Helping us to understand that His way is perfect, that He is a shield to those who trust in Him.

As for God, His way is perfect! The word of the Lord is tested and tried; He is a shield to all those who take refuge and put their trust in Him. Psalm 18:30

Helping us to understand that without Him, we are nothing. And so we will celebrate this Christmas with grateful hearts, and a little more understanding that Jesus is the reason for the season.

Thank you again for standing with us in prayer, supporting and encouraging us. We are so grateful that we are not doing this journey alone. May God bless you and your family.

Now faith is the assurance (the confirmation, the title deed) of the things [we] hope for, being the proof of things [we] do not see and conviction of their reality [faith perceiving as real fact what is not revealed to the senses]. Hebrews 11:1

Be strong and courageous

It's been a while since I've written a post here, and that is not for a lack of goings-on but rather that I am aware that our children are getting older and I need to be conscious of their privacy. With that in mind, I asked Victoria if she was okay about me writing this post.

It's okay for me to write about me and my thoughts and struggles, but this story is not just about me, it started with a three year old girl with a tumour in her brain. And it includes three siblings and a father who each continue to process pain and grief in different ways. 

It is hard to believe it is almost seven years since Victoria was diagnosed. Here is a video we found the other day, when Victoria was four and on chemotherapy treatment, a reminder of just how young she was. 

Now she is 10 years old and full of life, praise God! Her understanding of what has happened, where she is now and what her future holds, is very tricky emotional ground. 

After the scan in May, which showed that the tumour was stable, thank you Jesus, Victoria went through an intense period of anxiety for a couple of months. We are so grateful for the support Victoria received during these months, especially from the wonderfully caring teachers at school. 

A Redkite Social Worker advised that it was normal for children around her age to re-process their cancer diagnosis, and that she is likely to do more re-processing around the onset of puberty and in her late teens. All I can say to that is praise God we don't do this journey alone!

Alongside that re-processing, there is also the continual need to attend to the physical implications of having one side of the body growing slower than the other side. We continue to pray that God will do a  miracle in this area in her life, but in the waiting Victoria is doing all she can (with the support of some great people) to keep the left side of her body functioning well.

Around the end of June, just as the anxiety was starting to subside, Victoria started to experience great pain in her left knee and pain. She was advised not to swim, run and dance until the pain subsided. 

In this 'resting' time, she was advised to start working on building up the strength of the muscles on her left side. So under the guidance of a physio Victoria has been going to the gym for the past couple of months.

In October she had some casting on her leg to help re-position her left foot (first photo). Although, even having a leg in a cast doesn't hold her back, as you can see in this video.

So I guess the essence of what is happening now in this journey, is that Victoria is no longer a little child, who easily accepts the re-assurance of her parents, "It's going to be okay". No, she is older, with more understanding. She knows what she has been through physically. She knows what she needs to do each day to keep her body functioning well. She sees her peers dancing in ways that she can't, wearing pretty sandals that she can't wear, and she has to process her anger and disappointment. She has to wrestle with that question of why hasn't God healed me yet? A question that Ken and I don't have the answer for. 

She has to find strength to keep living with hope. One morning, during those weeks of anxiety, when it was just too hard to go to school, Victoria found some songs written by Moriah Peters, including Brave; Oh hear my God is near; Stand Strong; Born to be free; Waterfall. We spent the morning together singing these songs, getting their words of truth into our hearts. 

Victoria's next scan is drawing nearer, Monday, 18th December (We will get the results on the 19th). A couple of weeks ago I found Victoria at her desk, listening to some of Moriah Peters' songs, stop/starting them and writing down the lyrics...

She asked me to laminate them. It wasn't until a few days later that God opened my eyes to what I had seen - here was our daughter, preparing herself to fight against the anxiety that so often comes prior to the scan. She is learning how to find her strength in Jesus.

We are expecting only good results from this next scan, believing that God continues to hold Victoria, and indeed our whole family in His hands. 

Thank you for your continued prayers for Victoria. Thank you for the emotional and practical support that is continually given to her. We are blessed to have you in our lives. Next week I will post the results of the scan

Have not I commanded you? Be strong, vigorous, and very courageous. Be not afraid, neither be dismayed, for the Lord your God is with you wherever you go. Joshua 1:9

Love and kindness

The scan indicated that the tumour is stable. Thank you Jesus for your mercy. Thank you everyone who continues to stand with us in prayer, believing for complete healing in this little body. At the results appointment there was a confidence expressed that the tumour would not grow again. Again thank you Jesus for Your mercy and that You have the victory always.

Charlotte came to the hospital with us on Monday to support Victoria preparing for her scan. There is nothing like this sisterly love to add some hilarity to the goings-on.

These last two weeks Charlotte has been all we hoped a big sister would be. She has managed her own anxieties and encouraged her sister with a reassuring love and patience.

And Charlotte hasn't been the only one pouring out love and grace to Victoria in the past two weeks, when anxiety about this scan rose it's ugly head and caused some havoc.

Victoria's school friends have been giving her cards of encouragement throughout the week, and comforting her as best they can. Yesterday after getting the scan results we decided to bless the Year 4 students with a party to say thank you for the love and kindness they have shown Victoria. Charlotte took on the role of event co-coordinator and table design. Alexandra was her helper. Victoria decided she would like to go to class (probably a good idea after she hasn't been in her own classroom much in the past two weeks!).

What a blessing the school community has been to our family over these past two weeks (and indeed the entire 6.5 years of this journey). Showing the practical love of Jesus in our time of need. Thank you.

At the end of this post is the entry from my God Girl Blog last week explaining more of what has gone on in these weeks leading up the scan.
 

Now we now looking forward to returning to that lovely normal life that we have begun to so enjoy. The next scan will be in December, with a view to then having the scans further apart.

Saying thank you again for your prayers and support, seems so inadequate, but that is all we have, so thank you. Thank you for not giving up in prayer. We have seen the goodness of God, and can testify to the truth of this scripture....

The thief comes only in order to steal and kill and destroy. I came that they may have and enjoy life, and have it in abundance (to the full, till it overflows). John 10:10

We continue to stand on The Rock that is Jesus.

Watch, stand fast in the faith, be brave, be strong.
1 Corinthians 16:13 NKJV 
 


God Girl Blog Entry - May 11 2017

For us, it's that time when the scan-anxiety starts to take hold. How do you teach a nine year old to find refuge in God?

Be my strong refuge, to which I may resort continually; You have given the commandment to save me, for You are my rock and my fortress. Psalm 71:3 NKJV

Can you remember what you were doing when you were 9 years old? I was at a little primary school in Auckland. We would walk to school carefree. On Sundays we would roller-skate in the local Supermarket car park because there was no Sunday trading. We would have fun (and some scary moments) sailing around the Hauraki Gulf on the yacht my father built. I was part of a family that loved me and encouraged me. There was probably some stress in my parents life, but I was oblivious to that, and that oblivion was okay because they were adults and I was a child. Kid's lives are supposed to be stress free. Aren't they?

On the news we can see that there are many kids whose lives aren't stress free. No, for some every day is a fight for survival. 

In our little world here of Valentine, our little nine year old's world has been punctured by fear and anxiety for the past week or so, as her next scan draws nearer. It is heart-breaking to watch.

How do you teach a nine year old to find refuge in God?

My answer - by letting her keep living life, not isolating and withdrawing her from life and the hardships. But rather, letting her experience the many ways God has provided refuge for her.

Refuge - a shelter from pursuit or danger or trouble; a person or place offering this; a person, thing, or course resorted to in difficulties. (Oxford Concise Australian Dictionary)

Here are some of the ways that God has provided refuge for Victoria over the past 10 days......

With the swimming coach - who took the extra time to encourage her to try something new this week

With the school teachers - who have gifted her with grace as they have moved her from class to class finding distractions, and given her beautiful physical gifts.

With the school office staff - who provide cuddles, a comforting word and the phone call to mum.

With the sports teacher - who takes extra time to help her prepare for the school athletics competition next week

With the 4WD clubs - who gave up their Sunday to give the Camp Quality families fun on Stockton beach. 

With her brother - showing her a new app on the ipad (although I don't know if it was entirely appropriate)

With her sisters - as they blast out Toby Mac songs in my car, singing at the top of their lungs - this is not a test, this is the real thing!

With Ken - taking her out on a donut date for afternoon tea

With me - sitting in the back seat of the car together after arriving home for school. Just sitting together, few words spoken.

With her journal - writing her thoughts to God and drawing love hearts.

With my missing bible - reading with the torch at night, when the lights should have been out.

And all this with the prayer covering of many who have stood in faith with her for the past six years.

This is the refuge that only a loving God can provide. 

He who dwells in the secret place of the Most High shall abide under the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress; My God in Him I will trust." Surely He shall deliver you from the snare of the fowler and from the perilous pestilence. He shall cover you with His feathers, and under His wings you shall take refuge; His truth shall be your shield and buckler." Psalm 91:1-4 NKJV

Thank you to everyone who has provided refuge to Victoria in some way this week.

A future and a hope

For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope. Jeremiah 29:11 NKJV

Just over four years ago in 2013, in my post I wrote the following prayer request regarding Victoria's sporting activities at school.

Please pray that Victoria will not lose confidence and will not stop trying to participate in these physically challenging activities. We believe she will indeed be victorious in all areas of her life and that she will know the peace of her heavenly Father.

And today, by the grace of God, Victoria is continuing to gain confidence and see victory in her life. Thank you to everyone who has stood with us in prayer, believing that Victoria would live her life to the full.

Swimming is one of those physical areas where Victoria is going from strength to strength. For example...

February 2016 - Victoria could barely swim 25m freestyle.

October 2016  - she swam her first 50m freestyle at a NSW Multi-class competition - with a time of 1:33:51 seconds.

February 2017  - Victoria swam the 50m freestyle in 1:12:08 at the school zone competition, an improvement of 30 seconds.

Her Breaststroke seen similar improvements, with her personal best time improving by over 30 seconds from 2016.

  

The hidden blessing in all this is that swimming is the best activity Victoria can do to keep the left side of body functional and growing in strength. So how good is it that God has put this love of swimming in her heart. It is not a struggle (usually) for her to go to training, and she is always keen to receive instruction on how to improve.

Thank you for your prayers for her. Please continue to pray for physical healing to manifest in her, and for the strength she needs to make it through the emotionally challenging days (thankfully these days are becoming less and less). 

Again it has been a blessing to have six months between scans. Each of our children has had a great start to the school year, without the interruption of scanxiety. 

Victoria's next scan is on the 15th May. We will get the results on the 16th May.  We continue to believe for the complete disintegration of the tumour, in Jesus Name. We would appreciate your prayers for peace for Victoria and our family as that date draws nearer. 

Finally, the scripture from that February 2013 post still holds true for today,

When I said, "My foot is slipping", your love, O LORD supported me. When anxiety was great within me, your consolation brought joy to my soul. Psalm 94:18-19 

Thank you again for your prayers and support. We will continue to give testimony to God's faithfulness.