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