Thursday, February 28, 2013

27 February 2013

All went well at treatment yesterday. Looking at this picture, who would have thought that Victoria had just been sitting in the treatment room for the past 4 hours!
Having Alexandra with us at the hospital now is such a blessing. She watches everything with interest and is so proud of her sibling bravery beads. The other night at "show and tell" at dinner, she showed us all every one! Normally siblings get 1 bead per visit, however this week Alexandra got 5.
The nurses also gave the girls some bags and craft things to take home.  They very proudly wore them out of the hospital.
Next Wednesday is an off week, which is great as Victoria can attend the school athletics carnival.
Thank you to everyone who prayed for Victoria's challenge of the circuit at school last week. Being the determined girl that she is, she gave every activity station a go, and most she could do in some way.
I don't often say this or in fact even think it, but today I am just going to put it out there - it is really hard being a family who has a child with cancer. At times the stress on family members is immense! Here is a snippet of an exchange that took place between some of our children last week ..
Child A - I don't want to help *** anymore. Why does she need help anyway?
Child B - Because she has cancer
Child C - Why do I have to be the only one in the family who has cancer?
Obviously this type of conversation doesn't go on everyday, or even every week or month. But there are days it really does get all too much for some of us. Thankfully we have never all felt this way on the same day, so at least 1 person in the family can stand strong and help the rest of us lift our heads and come back to a place of love and grace.
Victoria has just completed week 34 of treatment. She has about 4 months to go. The next scan is April 16th. This journey has been and is long. As a mum the challenge to be emotionally and spiritually strong can sometimes be very overwhelming. My gracious heavenly father reminded me this morning of Isaiah 40 v29-31, particularly verse 31, but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (NIV) This truth brings great peace to my heart and a supernatural energy to continue through the day.
My mind too is now often jumping ahead to what happens after July. It is with every ounce of mental strength I can muster that I bring that mind back to focus only on today. I remind myself of this scripture God gave me back in June 2010 when we were facing other trials, and as with His word, how relevant it is still for me today ...
But me, I'm not giving up, I'm sticking around to see what God will do. I'm waiting for God to make things right. I'm counting on God to listen to me. Micah 7:7 (The Message)
Prayer Points
1. Victoria will continue to have minimal side effects from the chemotherapy
2. Each member of our family will continue to seek God for strength and learn more about how to show His love and compassion to each other
3. Our family will continue to stand strong together and be a light for Jesus.
Thank you too for sticking with us.

Thursday, February 21, 2013

21 February 2013

Victoria had enough neutrophils to have chemo yesterday. Praise God.

After discussing schooling impacts with Victoria's teacher I decided to change Victoria's treatment day to Wednesday, mid-morning, with the approval of the doctors of course. This means Victoria can go to school and learn the phonogram for the day, and then go to hospital and do her homework! Well, that is the theory anyway. You can see in the photo below, that whilst the pens and papers are out, the girls focus is elsewhere - watching a DVD.
This change in routine also means that Alexandra will be joining us each Wednesday. She is now old enough to sit for the required length of time! If necessary we can go for a walk with the buzzer (see it on the table) whilst waiting for the blood test results to come back, and the receptionist will buzz us when the doctor needs us to return. We normally have to wait 45 minutes to an hour for the blood to be analysed.
This afternoon I have had an interesting telephone conversation with Victoria's Occupational Therapist. We were discussing Victoria's eyesight and she suggested I try the following, to understand better what Victoria can and can't see. Why not give it a go....
1. Put on a pair of glasses
2. On the left lense, put a yellow post it note covering from the centre of the lense to the outside of your face
3. On the right lense, put a yellow post it note covering from the centre of the lens to your nose
Now you have the exact same vision as Victoria! And we have a better understanding why Victoria tilts her head to the right when she is writing! And so the learning goes on.
Victoria continues to love school and learning the phonograms. Tomorrow she starts circuit training for sport which will be a bit tricky for her and the school athletics carnival is in the next 2 weeks.
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.
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

Tuesday, February 19, 2013

19 February 2013

Thank [God] in everything [no matter what the circumstances may be, be thankful and give thanks] for this is the will of God for you [who are] in Christ Jesus [the Revealer and Mediator of that will].
1 Thessalonians 5:18 AMP

We do have so much to be thankful for, despite all the things that are thrown at us as a family, we continue to experience God's blessing and favour on all our lives.
This update is really a bit of a photo album of the wonderful weekend we have just had away at the New Family Camp with Camp Quality.  I hope you don't mind.

The camp was held at Riverwood Downs, at the foothills of Barrington Tops, a world heritage wilderness. We were spoilt in 4.5 star resort rooms set amidst beautiful gardens.

We all enjoyed the many activities made available for us, including canoeing on the river ....

Ken, Victoria and Alexandra easily won the up-stream race. Marshall, Charlotte  and myself found it difficult to go in a straight line, and constantly went from one side of the river to the other.

This could possibly have been due to the lack of co-ordination between our 3 paddles!

Tubing down the river was another activity enjoyed by Ken, Marshall, Charlotte and myself. Believe me, it wasn't always this calm and peaceful. There were a number of rapids we had to travel through!

On the Saturday afternoon two oncology social workers from Redkite came down from Brisbane to run a parents group. The purpose of the group was to provide a relaxed, informal get-together where we could chat with other parents about the impact of childhood cancer on you and your family. Both Ken and I found the group very beneficial, as although each family's experience is unique there are many commonalities in terms of the trauma experienced at the time of diagnosis and coping mechanisms throughout the journey.
Whilst we attended the parent group the children were busy in the craft room.
Alexandra enjoyed afternoon tea.
Charlotte got creative on the canvas.
Victoria raided the textas tub.
Marshall, the artist at work.
After the parent group it was time for some
relaxation in the pool.
Riverwood Downs is just magnificent, and with
all the recent rain it was all so green.
Sunday morning we all had the opportunity to go horse-riding. The children were led around the paddock on various horses.
Alexandra (her legs didn't quite reach the stirrups)
After the children had finished their rides, they were taken back to the camp and looked after by the Camp Quality volunteers, whilst the parents had the opportunity to ride the horses on a trail over the paddocks, up hills and through the trees. It was great fun, no-one fell off.
All in all we had a fantastic weekend away. It was great to get outdoors and marvel at God's beautiful world. It was equally good to have some laughs as a family.
Prayer points
1. Victoria is well enough to have chemotherapy this week
2. Strength and energy for Ken and I as we face the challenges this circumstance brings.
Thank you again for your prayers and practical support. We are forever grateful.

Friday, February 15, 2013

15 February 2013

This week Victoria went to the John Hunter Hospital for chemotherapy on Wednesday, so Alexandra was able to accompany us. What a great time she had on a very ergonomic chair!

Alexandra even thought it might make a good motorbike seat, with the bed-end being the handlebars.

The nurses in the day unit were delighted to see the girls' smiling faces and loved hearing the songs that Victoria had learnt at Prep, including the one about Mrs Brown who went to town with her underpants down.

Victoria was pleased to have Alexandra with us for the day.
It seems that Wednesday's are a quieter day in the paediatric oncology day unit, so rather than waiting for the blood results in the treatment room, we were able to wait in the reception area.


The girls watched a movie and then did some colouring and play at the little table. We had to wait about 2.5hrs for the blood results, as when Victoria's neutrophils are reported as low, additional checks need to be done.
The additional checks confirmed that Victoria's neutrophil count was only 0.3 so Victoria was unable to have chemotherapy this week.
We are thankful to God that Victoria has remained well these past 2 days and we are on track to attend the Camp Quality family camp this week. We are all looking forward to a welcome break away from home, even though the camp will have its own emotional challenges. I always cry when we arrive at any of these events, overcome with people's generosity and kind hearts, and very mindful of the reason why we are indeed attending the event.
Prayer Points
1. That every member of our family will be a blessing to at least one other person at the camp.
2. That all the camp attendees will remain well and safe during the weekend.
As we have come through the trials of the past two weeks, I will continue to claim this scripture over our lives, Psalm 23:1-3 The LORD is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake.
Thank you again for your prayers and continued practical support of our family.

Sunday, February 10, 2013

10 February 2013

Thank you to everyone who has been praying for our family in the past few days. We have made it through, have regained strength and are ready to face this next week.

How true this scripture is: You are forgiving and good, O Lord, abounding in love to all who call to you. Hear my prayer, O LORD; listen to my cry for mercy. In the day of my trouble I will call to you, for you will answer me. Psalm 86:5-7 NIV
This photo of Victoria in the pool was taken on Saturday. Doesn't she look a picture of health! Her hair has started to grow back, it is almost an inch long all over. The lack of hair loss was an answer to prayer.
The visit to the Oncologist on Thursday confirmed what the Neurosurgeon had told us. The tumour is stable. Chemotherapy will continue until July. Victoria just completed week 32 of treatment this week. Only 20 weeks to go!
In July, the chemotherapy treatment will stop. Victoria will have scans every 3 months to review what the tumour is doing. If the tumour remains stable and Victoria's health remains good nothing will be done. If the tumour grows again, another 12 month course of chemotherapy will be considered. The goal of the chemotherapy is to prevent or delay radiation therapy. Our prayer is that Victoria will remain well and the chemotherapy will prevent radiation. Surgery is no longer an option, the risks outweigh the benefits.
As for my car, we got it back from the repair shop yesterday, thanks to a wonderful mechanic who worked all day Saturday for us. And thanks to the generosity of a wonderful friend, we had the finance to pay for it. God definitely does listen to our cries for mercy and answers them.
Saturday afternoon we had a very early celebration for my mum's 70th birthday. Mum has been here from New Zealand for the past 2.5 weeks. She has been an amazing support, sticking with us as we ride the ups and downs of this journey, not shrinking back when the going gets tough. It was fantastic to relax and have some fun after two weeks of difficult trials. (Yes, in the midst of the past 2 weeks, Ken's office flooded twice!)
On a completely different note, Camp Quality have asked us to attend a camp this weekend as a 'mentor family' to families who have just received a diagnosis in the past 12 months. It is an honour to be asked, and overwhelming at the same time, as we are still in the midst of our journey. But then, so is God. He hears us, listens to us and answers us, these past 2 weeks have been testimony to that truth.
Prayer points
1. We will continue to fix our eyes on Jesus, despite the trials that come our way.
2. Victoria will remain well as she mixes with children at school.
3. Our family will be effective mentors at the Camp Quality new families camp.
Thank you so much again for your prayers, please do not underestimate their power. Thank you to for the practical support and encouraging emails. We need it all.
Love Ken, Wendy, Marshall, Charlotte, Victoria and Alexandra

Wednesday, February 6, 2013

6 February 2013

Well, today has been one of those days when I just wanted to scream, why can't life be easy and simple?????
The scripture God gave me this morning as I was doing my devotions was from 2 Timothy 1:7, For God did not give us a spirit of timidity (of cowardice, or craven and cringing and fawning fear), but [He has given us a spirit] of power and of love and of calm and of well-balanced mind and discipline and self-control. AMP
Well, I will say upfront, I certainly needed to call on that spirit of calm, well-balanced mind, discipline and self-control today.
On the way to the appointment with the neurosurgeon to get the results of Victoria's scan my car broke down. It just stopped in the middle of the traffic. I buried my head in my hands and howled.
Thankfully, and believe me it was difficult to find something to be thankful for, I was only 100 metres from Ken's office, so he was able to come and 'rescue' me. Ken, with the help of another man, pushed the car to the side of the road. Then I commandeered Ken's car and sped (within the speed limit of course) off to school to pick up Victoria, and then to the appointment.
Finally we made it to the neurosurgeon's office, 30 minutes late, only to wait another hour before seeing him. The wait actually gave me time to gather myself together! Thankfully I had that time, as the scan results were ok, but not what we had hoped and prayed for.
The scans indicate that the tumour is stable. This means the chemotherapy is holding it at its current size, for which are very grateful. This report, of course is better than having the tumour growing. However it does mean that other options will have to be investigated. We will find out more about those options tomorrow when we meet with the Oncologist.
We thank God that despite her circumstances Victoria is so loving her life. She is having a great time at kindergarten, excelling at swimming lessons and is eagerly awaiting starting Girls Brigade next week. Taking the bus to and from school is definitely a highlight in her day!
For those who are interested, and it can make for some scary reading, I came across this very good description of the tumour that is in Victoria's brain. It is in the glioma  category, and is a Grade 1 pilocytic astrocytoma, located in her brain stem. This information is from the Advanced Psychological website in the USA.  Note, when we speak about the tumour, we say "the tumour in Victoria's brain", rather than Victoria's tumour, as we do not believe that the tumour belongs to Victoria. It has absolutely no right to be in her brain, in Jesus Name.

The website provides a good description of the treatment options for this type of tumour.
If you do foray into these websites, please keep in mind, that whilst they describe the situation and options, they of course don't take into account God's sovereignty and His healing power. It is God who we choose to put our faith in.