Friday, September 27, 2013

27th September 2013

Victoria was well enough to have chemo yesterday. The count down is on now, the current plan is 4 more treatments. This may possibly change to only 3 depending on the MRI results we get on 28th October. 

Victoria herself is very well, just a bit tired, so school holidays have come at a good time for her. This week the Newcastle Star had an article about the fundraising event Starlight Movie Month, which has now been extended to end of October. The article included some of Victoria's story and the amazing support she has received from the Starlight Foundation. If you don't live in our local area, you can click on this link to see the story - Newcastle Star article.

Thank you again to everyone who is helping us get through these last 6 weeks. It is all making a huge huge difference to our family.

We continue to chose to trust God for a good report from this next scan. We thank our God for the way that Victoria has coped with this circumstance and overcome all the challenges she has had to face. We thank our God that our family has learnt so many good things over the past few years and has been so humbled by the love and support we have been shown by so many people.

Deuteronomy 32:4 He is the Rock, His work is perfect, for all His ways are law and justice. A God of faithfulness without breach or deviation, just and right is He.

Thursday, September 19, 2013

19th September 2013

Victoria was well enough to have chemo today, week 62 done and dusted! We also has an appointment with the occupational therapist who was pleased with the way Victoria was using pressure with her left hand to stabilise the paper when writing. When chemo finishes we may look at some more hydrotherapy to help build strength in her left arm.

A big thank you to everyone who is 'carrying' us through this last 3 months of Victoria's treatment. It is so re-assuring and comforting to know that we have this support. Ken and I have been enjoying our Saturday night date nights, getting out and having that uninterrupted conversation. The Thursday hospital help has made a huge different to my mental state, even as I drive into the carpark, I think to myself, "I have help, this will be a good day." The Thursday night dinners that arrive at our home, finish off a huge day wonderfully. And of course everyone who is praying for our family, thank you, thank you, thank you.

Another big thank you to everyone, family and friends, who made it possible for me to get away from a night earlier this week. This time alone gave me the opportunity to pray and gather my thoughts regarding making an emotionally healthy transition from 'treatment life' to a more 'normal life' for hopefully at least 12 months.  The wonderful Redkite organisation run a 'transition' group via telephone (a telegroup) for 7 weeks. Redkite describes the group this way, "These intimate discussions bring parents together and reduce the sense of isolation they can often feel once they return to the community. They provide the opportunity for everyone to share their experiences and learn from each other, encouraging the development of personal strengths and coping skills.

Unfortunately I won't have the opportunity to join one of these groups until early 2014, so I really wanted to take some time to consider the changes that will take place in our lives when Victoria finishes treatment at the end of October and how we can best manage that change. Somethings won't change, for example Victoria will still have the portacath in, so the routine of going to hospital if she has a high temperature will still be required. But as Victoria won't be having chemotherapy pummeling her neutrofils, she should be at less risk of an infection, and hopefully the hospital visits will be as simple as checking her out and sending her home again! Rather than the 3 day stay. 

During this transition time, one area we do want to focus on is re-building the connections within our family. By the grace of God they have withstood the barrage of change and upheaval over the past almost three years. But now it is time to move from survival mode, back to doing, what Ian Grant in his book 'Growing Great Boys' calls 'Intentional parenting'. Here is an excerpt from his book...

During the sixties and seventies, a generation of parents who'd rebelled against societal norms and the standards of their parents began experimenting with different ways to bring up their kids. A relatively values-free approach to child rearing became the norm for many. However, as children who have grown up without boundaries are picking up the pieces of their sometimes chaotic lives, there appears to be a bit of a swing back. Educators and parents recognise the value of mentorin, boundaries and a sense of future as passed on by loving and firm parents. I like to call this 'intentional parenting'. (p 193)

Whilst I was away for the night I was finally able to finish reading this book, Growing Great Boys, and it has given me many ideas about re-connecting with our children. I will mention a few over the coming weeks. 

To finish off this post, here is a poem from the book. You may have seen it before, but I think it is well worth another read, especially given the way today's society generally works.

The Anyway Poem
By Kent M. Keith

People are often unreasonable, illogical, and self-centred
Forgive them anyway
If you are kind, people my accuse you of selfish, ulterior motives
Be kind anyway.
If you are successful, you may win some false friends and some true enemies
Succeed anyway.
If you are honest and frank, people may cheat you.
Be honest and frank anyway.
Transparency may make you vulnerable.
Be transparent anyway.
If you find serenity and happiness, others may be jealous.
Be happy anyway.
What you spend years building may be destroyed overnight.
Build anyway.
The good you do today may be forgotten tomorrow.
Do good anyway.
People who really want help may attack you if you help them.
Help them anyway.
Give the world the best you have and it may never be enough.
Give the world your best anyway.
You see, in the final analysis, it is between you and God.
It was never between you and them anyway.

Tuesday, September 10, 2013

10th September 2013

Victoria has remained well since having chemo last week, week 3 in the 4 week program. Over the past 3 months, it has been after the week 3 treatment that Victoria has ended up in hospital with high temperatures, so we are very grateful that this has not been the case this past week. 

Before the chemotherapy last week, Victoria had some new night boots made. She chose 'green' and 'gold' !

We had great fun on Fathers Day and Ken's birthday which were one and the same day this year. All home and well, well enough to get out on Mistral 2 for the afternoon ....

A very different picture to the same time last year when Victoria was in hospital. Again we are ever so much more grateful for these precious moments together as a family.

Yesterday was Marshall's birthday, and he wanted to have Domino's pizza for dinner. When the pizza's arrived, guess whose photo and story was on the box topper - Victoria's - advertising the Starlight Children's Foundation movie month, a fundraising event, please click on this link if you want to find out about how you can participate and help raise money for this wonderful charity, from which our family has greatly benefited.

It is amazing the difference it has made to us all not having had Victoria in hospital for over three weeks. For me, I feel that I am not in "catch up" mode around the house and with the other children, as has pretty much been the case for the past three months. We are praying that between now and the end of October when the treatment finishes that Victoria will indeed continue to be well.

We give God the praise and glory for His continual hand on our family, in every area of our lives.

Blessed be the Lord, because He has heard the voice of my supplications. The Lord is my Strength and my [impenetrable] Shield; my heart trusts in, relies on, and confidently leans on Him, and I am helped; therefore my heart greatly rejoices, and with my song will I praise Him. The Lord is their [unyielding] Strength, and He is the Stronghold of salvation to [me] His anointed. Save Your people and bless Your heritage, nourish and shepherd them and carry them forever. Psalm 28:6-9 (AMP)

Please continue to pray that Victoria will remain well, and the next scan on 22nd October will give a good report. Many many thanks.