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.

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.

31st August 2013

Praise God for a 'normal' week! Victoria was well enough to have chemo on Thursday. She enjoyed a good week at school, culminating with an exciting outdoor ride through the sensory garden at RDA on a glorious Friday afternoon. 

The sensory garden is full of things that the children can look at and touch as they ride through the garden. This item is a bike wheel with little horses attached to it. The children spin it around.

Likewise this is a bike wheel with plastic pins and balls attached.

The balancing and stretching whilst doing these activities is just so good for Victoria.

Next week will be Victoria's last riding session for the year. We are so grateful that she has been given this opportunity, and are extremely grateful to the volunteers who give up their time to make these programs possible. Hopefully Victoria will be able to do more riding programs next year.

Regarding chemotherapy, the current program is for chemo to continue until the end of October. Victoria continues to have minimal side effects from the chemotherapy. We have dramatically increased her daily water intake which has stemmed the constipation problem that she was experiencing. Not sure why it took 12 months to work that out!!! Her next scan is Tuesday October 22nd.

Thank you for your continued prayers and support. It is such an encouragement to us all to know that we are not doing this journey alone. A friend gave me this scripture through the week, a reminder of our Heavenly father promises ...

Whatever God has promised gets stamped with the Yes of Jesus. In him, this is what we preach and pray, the great Amen. God's Yes and our Yes together gloriously evident. God affirms us, making us a sure thing in Christ, putting his Yes within us. By his Spirit he has stamped us with his eternal pledge - a sure beginning of what he is destined to complete.

2 Corinthians 1:20 -22 (The Message)

23rd August 2013

Do you think we are mother and daughter?

Thank you for all your prayers, Victoria is doing very well. The chicken pox did not progress beyond the 4 spots, and it did not progress beyond Victoria! Hallelujah, praise the Lord.

Victoria was excited to be back at school on Tuesday, with here friends and beautiful teacher. On the way home from chemo yesterday she said, "Mum, I just love school." Victoria's blood count was high enough yesterday for her to have chemo, and she has enough platelets to go riding to day. Yippee.

If you have been following our journey for a while you will know that we have a huge number of people who support our family in many different ways. One place we receive a lot of support from is the local church that we belong to. In the media the church often gets very bad press, and understandably so for some of the events that have occurred. However, there is another side to the church, a loving, caring, supportive side, that doesn't seem to get very much press at all. In fact I can't remember the last time I read a positive article about the church in the newspaper or watched a news item on tv. So here is something positive about being a part of a church family....

When it became evident to me in June that I was struggling emotionally with the weekly visits to the hospital, I shared my feelings with a couple of close friends. One of whom is a member of the church we attend. Within a couple of weeks the church had assigned someone to help give me and our family the extra practical support we needed to make it through the last few months of this round of chemo. 

I was finding it harder and harder to go to the hospital each week with a positive attitude. I was just plain tired of it all. I did not want my negative attitude to "rub off" on Victoria or Alexandra, as they both looked forward to the hospital visits. 13 months on, they still skip down the hospital corridors saying hello to everyone! Praise God. I decided I needed someone with me to share the load, Ken had to work. He was not an option. My immediate family all live in NZ. They were not an option. So our church family stepped in and filled the gap. Our church has set up  a roster of people to come up to the hospital with us on Thursdays, which means I can often go and have a quiet lunch by myself, not having to rush back to the treatment room.

Another area in which we were desperately needing additional support was our marriage. Marriage can be difficult enough sometimes, without the added pressures of having a seriously ill child. Ken and I have been very much in survival mode for the past 2.5 years, and now as Victoria's treatment is coming to an end, we thought it was time to start to reconnect as a couple and start to re-build our marriage as we move into this next phase of this long journey. But our problem was getting time alone! With four children and running our own business, there is always someone or something that needs attention! Once again our church family has stepped into fill this gap, organizing a babysitting roster for each Saturday night for the next few months. Ken and I had our first date night last Saturday night. The date only lasted an hour as we were simply exhausted, but it was great to get out and actually be able to finish a conversation without being interrupted!

So I hope you can see that being a part of a church family has been such a blessing to our family. Our church family has filled the gaps in our lives many times. The church is not perfect, but it can be a very loving and caring organisation that does it very best to show Christ's love. Our family is a testimony of that love.

This is love; not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete it us. 1 John 4:10-12

For anyone who is interested, the church we belong to is Macquarie Life Church.

13th August 2013

Last night, at about 9pm, Victoria announced that her leg had some spots on it and it was itchy. I had a look at it and thought, not good! We buzzed the nurse, who buzzed the doctor. The verdict was 'chicken pox'. So it was off to the special isolation room! 

Neither Victoria nor I can leave this room. I had to ask the nurse to make my porridge for me this morning, which she happily did. The nurses wear masks when the come in to see Victoria.

When I was talking to my mum this morning, I said I no longer have any expectations about how each day will go. However on reflection this is not entirely true, I do have one expectation, and that is that God will get us through each day. He has in the past and I believe He will today, and He will in the future. 

The bible verse I read this morning for my devotions provides hope for the day and the future ... Malachi 4:2 But unto you who revere and worshipfully fear My name shall the Sun of Righteousness arise with healing in His wings and His beams and you shall go forth and gambol like calves [released] from the stall and leap for you.

We have just seen the oncologist who has confirmed that Victoria has Chicken Pox. At this stage Victoria only has 4 spots on her leg, so hopefully no more will appear. Victoria will be going home this morning, no chemo this week, no school this week and no horse-riding this week. Just at home keeping a very low profile. 

Whilst we were waiting to see the doctor this morning, a friend text me Psalm 91 from The Message Bible, verse 14-16 is a promise I am holding on to ...

"If you'll hold on to me for dear life", says God, "I'll get you out of any trouble. I'll give you the best of care if you'll only get to know and trust me. Call me and I'll answer, be at your side in bad times; I'll rescue you, then throw you a party. I'll give you a long life, give you a long drink of salvation!"

Thanks for your continuing prayers and support.

12th August 2013

The doctor has advised this morning that Victoria will need to stay in hospital for at least most of today, and will be reviewed again this afternoon. She is well within herself, and has managed to do some spelling this morning. The hospital school teacher bought down some air-drying clay for her to model with.  Thanks for continuing to uphold her in your prayers.

For anyone who is interested, here is the general process that happens when Victoria has to come into hospital with a high temperature ....

We have pre-packed 'hospital' bags at home for Victoria and myself, sort of like the bag you prepare for hospital when the birth of your baby is impending. Victoria's bag includes a few pairs of pjs; some of her favourite books, including 'Angels watching over me', given to her by her Prep teachers last year; some of her favourite toys, like little plastic figurines that she plays imaginery games with; and a change of clothes to wear when she is discharged.

My bag is mainly filled with electronic gadgets to enable to me to keep communicating with the outside world! Chargers for my mobile phone, laptop, wireless modem, photo chip reader etc! I have a folder in which I keep all my current paperwork for our business, so I can just grab that when we need to go, as sometimes there are ideal conditions in hospital for getting a lot of bookwork done! I have also realised after the last couple of recent visits, that there is the potentially the opportunity to do a few self-beauty treatments such as pre-packed facials and hair conditioning, so will be on the look out for some of those this week to put in my bag! 

We also have another bag, the 'foodie' bag. The hospital provides Victoria with food, however I have to provide my own. So I bring some Uncle Toby's porridge satchets, bananas and my tupperware heating container and that takes care of breakfast.  Around lunch-time I am normally ready to have a break from the hospital room, so take a walk down to the cafeteria for a wrap of some sort. For dinner I have been enjoying some of the more exotic Healthy Choice frozen meals, followed by a chocolate bar from the fundraising box at the nurses station!

Now back to the process.... When Victoria's temperature reaches the trigger point of 38, we phone the J1 ward at the John Hunter Hospital and advise them of what is happening. 

At home we then put the anesthetic cream on Victoria's port. It takes about 30 minutes for the anesthetic cream to work. It takes us about 30 minutes to get to the hospital, so it means that Victoria's port can be accessed as soon as we arrive at hospital, and the blood can be tested to find out her blood count and some put aside to see if a bacterial infection is present.

When we get to the hospital, we go directly to the J1 oncology ward, by-passing the Emergency Department. Normally we go into the treatment room in J1 where the nurse does the accessing, and a doctor comes to do an initial assessment. Once those tasks are done, Victoria can go to her assigned room. These are all single rooms with their own bathroom, TV, playstation and a parent bed for myself or Ken to sleep in.

Sometimes, depending on varying factors, the doctors will decide to start antibiotics via the port, or they wait to see what transpires. And then we pray and wait.

Now that Victoria is at school, when she is well enough, she normally gets a visit around 9am from the school teacher who plans out some activities for the day.

And that is generally how it all happens. As for what happens back at home whilst Victoria is in hospital, that is another story for another day!

11th August 2013

It didn't take long for reality to set in once we returned home from our wonderful trip for Victoria's wish.

We arrived back home at 3pm on Saturday, and by 8pm that night Victoria started to feel unwell. By 6am Sunday morning we were on our way to the John Hunter Hospital. After some initial blood tests showed that Victoria had plenty of neutrofils, and the absence of any more high temperatures,  it was decided at 10am that Victoria could go home. 

However at 10.30am when the nurse came to de-access her port, it was apparent her temperature was climbing again, so home was no longer an option! Hence we are still here and will be at least until tomorrow.

Victoria is okay within herself, and certainly brightened up with a visit from the rest of the family this afternoon. 

We are just all so grateful that Victoria remained well whilst on her wish, another example of God's amazing grace on her life.

Today has certainly been a day for drawing deep from God's strength .... Isaiah 12:2,3

Behold, God, my salvation! I will trust and not be afraid, for the Lord God is my strength and song; yes, He has become my salvation. Therefore with joy will you draw water from the wells of salvation.

I know I say this on every update, and I am going to keep saying it, thank you so much for your prayers and practical support. Please don't underestimate the power of your prayer, our whole family is a testimony to answered prayer. And every single bit of practical help given to us helps us to all keep going physically and emotionally. Thank you, thank you, thank you.