29 March 2013

This past week has been a time of reflection. Prior to Victoria's diagnosis I didn't think much about Heaven. I lived gladly with the knowledge, that accepting Jesus as my Lord and Saviour meant, among other things, I had the assurance that Heaven is where I will spend eternity.

 

Since Victoria's diagnosis, at various times, thoughts of Heaven have been at the forefront of my mind. It is not that I don't believe that God can perform miracles, I do believe that. But I also know that God is sovereign.

 

I don't want our children to fear death. I want them to know that Heaven is a beautiful place where everything is perfect. To help them with that understanding, I have bought the book Heaven is for real for kids and have read it with our eldest child. He has an enquiring mind and is now listening to the audio book of the full version.

 

One of the things we know for sure about our life as a Christian is that Heaven is our destination at some point in time. I don't want our children to be afraid of that truth.

 

Victoria was able to have chemotherapy this week. No infections, all good. We had a session with the occupational therapist who has given us exercises to start training Victoria to scan to the left when moving around. Next week is a week off treatment.

 

On a completely different note, for anyone who enjoys contemporary worship, here is a song that for me is like stepping into a refreshing shower, You Revive Me, sung by Christy Nockels, from the White Flag album by Passion. I can highly recommend sitting quietly and letting the words flow over you into your heart. Let Jesus revive you this Easter weekend.

 

 

21 March 2013

Victoria was well enough to have chemo yesterday, despite her neutrophils being on the low side. Praise God. The infection in her arm has almost cleared up. Again we are thankful that it did not spread.

We were able to visit the Starlight Express room whilst waiting for the blood results. One Captain Starlight was doing face painting. Alexandra gladly put her hand up.

 

The Starlight Express room craft for the morning involved pipe cleaners, beads and calico bags. For the super-crafty you could have a go a poking the pipe cleaners through the calico and adding beads to make beautiful patterns.

 

 

We chose to stick with slightly simpler things. My sister, visting from New Zealand made some butterflies and spiders.

 

 

I helped Victoria make a necklace, which she is modelling. Note that dolly came with us to the hospital this trip, as she had the 'vomits during the night.'

 

Emotionally this week everyone is travelling pretty well, thank you for your prayer covering.

 

Last week whilst we were away I listened to a podcast from a wonderful friend from Sydney. It is well worth a listen if you are wondering if God has what it takes. It helped me to examine my thoughts and get them lined up with what God's truth is.

 

As draw closer to another scan, God's word continues to a marvellous comfort ...

 

"Asa cried to the Lord his God, O Lord, there is none besides You to help, and it makes no difference to You whether the one You help is mighty or powerless. Help us, O Lord our God! For we rely on You and we go against this multitude in Your name. O Lord, You are our God; let no man prevail against you." 2 Chronicles 14:11 (AMP)

 

Many many thanks again for the continued prayer and practical support. You are a blessing, in Jesus Name.

 

15 March 2013

God's blessing and favour is on us despite our circumstances. We have just had 4 nights away courtesy of the Starlight Children's foundation and NRMA Ocean Beach Holiday Park. These organisations really understand the value of families "getting away" just to  be a family having fun.

It was an absolute joy to have so much time just to 'be' with our children and marvel at how resilient they are. And how loving and caring they can be towards each other most of the time! Riding in the buggies was a display of this, as Marshall drove Victoria and Charlotte drove Alexandra.

Victoria and Alexandra thought that they would have ago together,. They didn't get to go anywhere, their legs weren't quite long enough.

 

As the four of them road down the path together, I wanted to yell out, "God is good, these children are a testimony of His goodness." 

This morning God gave me this scripture in relation to our children,  God is with them, and they're with him, shouting praises to their King. God bought them out of Egypt rampaging like a wild ox. Numbers 23:21-22. I am standing on that verse.

 

Wednesday of course Victoria had chemotherapy back at the John Hunter Hospital. As we drove there from the Central Coast, it made me think about those families who have to drive that distance of further each week once or twice for treatment. I again thanked God that we were living in close proximity to a hospital able to provide the treatment Victoria needed when she was first diagnosed.

It was very quiet in the Day Unit, we were the only ones there. The children were able to make themselves at home! Victoria was well enough to have chemotherapy this week. The doctors were concerned about an infection in her arm. Thankfully after prayer and antibiotics, when we returned for to the hospital for a check up yesterday, the infection appeared to be going.

Changing treatment day to Wednesday has many advantages, including easier access to the psychologist assigned to the paediatric oncology department. The topic of conversation this week was Victoria's adjustment to moving from the safe environments of home, hospital and prep into the big wide world of school.

 

An insight into how Victoria currently views herself came from this conversation at the camp ground. We were sitting next to a father and his son. We were putting on Victoria's socks, splint and shoes, when Victoria volunteered this information to the father,  "This is my splint. It helps me walk better. I feel weird because I have a splint." Thankfully the gracious father responded by saying, "It is just part of you."

Please pray for us as we help Victoria to understand that she is not weird, she is just different and that is ok.  And more importantly that she will believe that her heavenly father says she is "wonderfully and fearfully made". Psalm 139:14

Once again I thank God for this time away, as these sorts of conversations and valuable insights don't happen in the hub-bub of normal life, or can easily be missed in the 'circus' that is the Robinson household.

This last photo is a testimony of the healing that is happening in Victoria's body. The strength in her legs continues to increase as she runs and jumps effortlessly up and down the jumping pillow. Freedom!

Prayer Points
1. Victoria will know in her heart that she is fearfully and wonderfully made.
2. The infection will continue to disappear
3. Peace to reign in our hearts as the next scan draws closer (16th April).

7th March 2013

A picture of grace ...

 

My word for this week is 'grace'. And the scripture, a favourite

But He said to me, My grace (my favour and loving-kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and show themselves most effective in [your] weakness. Therefore I will all the more gladly glory in my weakness and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may pitch a tent over and dwell) upon me! 2 Corinthians 12:9 (AMP)

God has lovingly poured out his grace on me this past week. It has been filled with many tears. I have gone through another period of grieving the expectations of how our family would be at this time and what we would be doing. Tuesday night this week was the worst, in fact as I was crying myself to sleep I cried out to God, "Enough! Tomorrow is the school athletics carnival and I know Victoria won't be able to do some of the activities, but please let her enjoy the day, and please help me to get through the day without any tears!"

In His graciousness, we had the best day at the carnival. Victoria participated in what she could, and when she couldn't her loving gracious teacher found an alternative way for her to be involved.  Victoria herself showed strength and grace by cheering on her friends in the 100m race, as she watched from the side lines.

Another act of God's grace that I have reflected on this morning, was Charlotte's performance at the carnival. To our surprise she placed in the 400m and 800m race. I felt God say to me this morning, she has the determination and character to go the distance, to run the race of life and run it well. What peace that bought to my heart. His grace really is sufficient for us all!

As for my tears, there was only one moment in the day when I felt the tears well up, whilst talking to one of the beautiful caring school mums. And that was it! I was so thankful that I could maintain a smile for the entire day!

 

These photos are taken from the VIP night at the Newcastle Show last Thursday. The children had a great time on the rides. Marshall enjoyed the more daring rides, whilst the girls enjoyed honing their driving skills.

Although, I am not sure in Alexandra was totally confident in Charlotte's driving ability!

 

What a difference it makes not having to go up to the hospital for treatment this week. We have almost had a doctor/medical visit free week, but not quite!

 

Victoria's legs have been troubling her, so we did go to see the physiotherapist on Tuesday. Victoria's right leg is still tighter than her left leg (although less tight than in January, Praise God), making walking sometimes difficult. She has been unable to wear the right leg night boot due to this stiffness. The physiotherapist made a new night boot for her right leg with less of a stretch than the previous one. Victoria has worn the boot successfully for 2 nights now.

 

I feel for her as I see her wriggling in bed with both boots on, trying to get comfortable. And I wonder, how much more will she have to endure?

Prayer points
 

1. Thank you to God for his amazing grace

2. Please pray that Victoria's leg muscles will continue to stretch and that she will walk using her entire right foot, not just on tippee toes.


For anyone who is interested, I have been re-reading a little book (37 pages) called 'Good Grief' by Granger E. Westberg. I have found it explains the stages of grief very simply. And if you are grieving something, it helps you to know that what you are feeling at a particular point in time is 'normal'.

 

 

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.

 

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

 

 

 

 

 

 

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.

 

 

Marshall

 

 

Charlotte

 

 

 

Victoria

 

 

 

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.