30 January 2013

Well, what an emotional roller coaster we have been on in the last 48 hours. This scripture certainly sums it up for me...

But you, O Lord, are a shield for me, my glory, and the lifter of my head. With my voice I cry to the Lord and he hears and answers me out of His holy hill. I lay down and slept! I awaken again, for the Lord sustains me. Psalm 3:2-5


MRI Day - Tuesday 29 January

Tuesday 10am we arrived at the hospital for the day-long process of having the MRI. Children under the age of 7 requiring an MRI have a general anaesthestic to ensure they are completely still.  So Victoria has to fast from 6am that day until after the scan which normally is mid-afternoon.

Thankfully Victoria does not have to stay on the ward whilst waiting for the MRI. We visited the Starlight Express room, where Victoria and Alexandra treated everyone to a song and dance concert...

 

and did some painting on paper covered balloons, Granny Bett's favourite craft (not)!

Then Alexandra had her first experience with an electronic game gadget!

Whilst we were in the Starlight Express Room I had the opportunity to chat with some other mums with children with cancer.

One Mum, whose daughter had Leukaemia was very apprehensive about returning to school the next day, after 3 Terms of absence. Another mum whose daughter, only about 2.5 years old had had a tumour on her shoulder and 2 in her lungs. She had finished her treatment and was having scans to see if there had been any growth. I salute and honour these mums who have given everything for their children and were still smiling and laughing. It is a very tough journey. Everyone has a story to tell.

After coming out of recovery, Victoria couldn't wait to have a butter sandwich! At 4.45pm we left the hospital, and now wait for the results next week.


First day of Kindergarten - Wednesday 30th January

All was looking good for Victoria's first day of Kindergarten, until she woke up! Victoria was complaining of a headache, probably caused by falling out of bed for the first time ever that previous night. Due to her treatment we are unable to give her pain relief unless advised by the doctor.

As I checked the back of her head, I saw a red patch in amongst her hair. Hair, which is growing back, praise God for that!

The red patch sent me into a panic, as only 2 weeks ago the doctor was telling me to be very careful that Victoria didn't bump her head due to low platelet levels. Even riding a bike as a no no!

Victoria seemed to be ok when she was distracted, so I decided that she could at least go to kindergarten for a couple of hours and then I would take her up to the hospital to get checked out.

I can't express the disappointment that was in my heart. All had been so perfect for a great start to kindergarten. Who would have thought that she would fall out of bed!

However, I had to gather myself together rather quickly to give Victoria the encouragement she needed for a great first morning. 8.45am was Victoria's official starting time on the first day. We were so proud of her.

Due to the head bump, I had planned to pick Victoria up at midday. But by 11am the school had contacted me as Victoria was very distraught about her head. The beautiful teachers, including her Prep teacher from last year had tried to console her, but to no avail. Charlotte had given Victoria all her morning tea and lunch to help her feel better too.

The fears flowed as I drove back to school with a heavy heart. Praise God for the Hillsong worship song, 'Beneath the waters', I am sure all of Belmont could hear me singing it (well really yelling).

So off to the John Hunter Hospital we went. It was very quiet in the Oncology Day Unit, so Victoria could be seen immediately.

After a thorough examination, assurance that the red spot on her head was just the start of a bruise, some panadol was administered. Back to school she went! All was good. Victoria was able to enjoy the last hour of school with her friends, and at dinner last night couldn't wait to tell us all about school. There was no mention of the hospital visit!

As for me, Ken and my mum, we were utterly emotionally exhausted by the days' events.

I am so grateful to God for providing me the scripture psalm 3:3-5 in the morning before these events took place, especially verse 5, I lay down and slept; I awaken again, for the Lord sustains me. Indeed He does sustain me and He so knows what we need before we know ourselves. 

Now we have the challenge of remaining in peace until we get the MRI results next Wednesday. Without God we would most certainly be a fumbling mess for the entire wait! At least with God, we have His strength to help us face each day and live with hope.

Prayer Points
1. Victoria can complete this first week of kindergarten without any more hospital visits
2. We can remain in God's peace as we wait for the results
3. For His peace and love to reign in the hearts of other families who are on this similar journey.

Many many thanks again for all your prayers and support. Every day we rely more and more on our heavenly father to sustain us.



HNE Matters


A friend, Jenny, recently told us there was a photo of Victoria and another little boy in the January edition of the Hunter New England Health Matters Magazine. The story was about the Christmas activities at the John Hunter. http://www.hnehealth.nsw.gov.au/news/healthmatters

When you click on the link, just open the pdf file.

I normally get a copy of this publication when we are at the hospital, and find it fascinating to read about all the great initiatives that are being undertaken here in the Hunter in all aspects of healthcare. It has opened my eyes to yet another new group of amazing, intelligent and caring people.


 

24 January 2013

We thank God that Victoria was able to have chemo yesterday so she can now attend the first 3 days of school next week.

Occupational Therapy Update

 

During the visit we met with Victoria's occupational therapist who did another school readiness assessment on Victoria. The assessment showed improvement in her motor-planning regarding writing, pencil grip and paper cutting, which is all very positive. She also provided some helpful hints for Victoria in the class room. One hint was to put stickers in the left hand margin of the page to help Victoria find the left hand side of the page due to the field vision loss. Without the stickers, Victoria starts to write about half way across the left page.

 

 

Bravery Beads

At the end of each hospital visit, the nurses give Victoria, (and siblings if they are there), bravery beads for various events that have taken place. For example: Green beads for clinic visits; Purple beads for Chemotherapy treatment; Stars for port accessing; WOW beads for being fantastic.

 

 

These beads provide such encouragement to the children and acknowledge what they have done on each hospital visit.

 

 

Currently the bravery beads are safely stored in some beautiful boxes given to us by one of the very thoughtful school teachers. They take pride of place in the kitchen.

 

 

Some of the mums have embroidered them on to calico teddy bears or quilts. We are not sure what we will do with ours at this stage.

 

 

Charlotte - The A1 Supporter

 

Charlotte once again accompanied us to the hospital and was wonderful support. I decided to reward her diligence and thoughtfulness towards her sister by letting her buy a piece of clothing...

 

 

Charlotte has been an absolute blessing to Victoria on these hospital visits, keeping her entertained and showing compassion when the various procedures are being done. I believe these experiences of these hospital visits and the understanding she has gained, will help her to cope with the challenges that lie ahead this year.

 

The questions begin

 

During the past couple of weeks Victoria has started to ask questions. Why am I the only one in our family who has a port? Why am I the only one who has to do chemotherapy? Why am I the only one who has to wear a splint?

My response was, "I don’t know why you are the only one in our family who has to go through these things. But God has given you all you need to deal with this. He knows you can cope with it."

I then went on to explain to Victoria that I send emails to people asking them to pray for her. She was very pleased about that.

We then sat down and together looked through a book I have created for her with all the photos that I have attached to the emails, and printed out comments and scriptures that people have emailed or texted in relation to her courage and bravery. The purpose of this was to remind Victoria of all the things she has already overcome, and of all the people who are praying for her, and of the immense love of her heavenly father.

I thank God for the wisdom and foresight God gave me in putting this book together late last year, knowing that the extra encouragement was going to be needed as Victoria's world view widens.

 

I believe that this scripture is going to be a key one for Victoria in the coming months and years ....

 

No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down, he'll never let you be pushed past your limit, he'll always be there to help you through it. 1 Corinthians 10:13 (The Message)

Thank you for your continuing prayers and support, particularly as Victoria has the MRI next week and we receive the results on Wednesday 6th February. We continue to thank God for all He has done, all He is doing, and all He is going to do.

 

 

17 January 2013

Victoria was able to have chemotherapy today, despite her neutrophils being a bit low. Charlotte came up to the hospital and was an awesome support.

 

 

The girls did some craft and played with their barbie dolls during the treatment. At this point in time Victoria is on track to have treatment next week and then will have an off week the first week of school. This will be such a blessing. She is so excited about school.

 

We also had another visit to the physio. The review showed that the night boot had stretched Victoria's muscles sufficiently that she can now wear her AFO (day splint) again. Another Praise God! Thank you to everyone who was praying for this specific healing.

 

The physio made another night boot for the right leg, to help those muscles stretch out too. Below is a photo of Victoria at home trying out the night boots. Victoria and Alexandra were watching TV and didn't want to be distracted to the sake of a photo!

 

 

 

Prayer Points

• The chemotherapy will continue to shrink the tumour.
• Victoria will be well enough to attend the first 3 days of kindergarten
• The night boots will continue to stretch her muscles sufficiently

We are feeling confident about the next scan on 29th January, trusting that God has it all under control.

 

Ah, Sovereign LORD, you have made the heavens and the earth by your great power and out-stretched arm. Nothing is too hard for you.  Jeremiah 32:18

 

We thank God that as we approach the 2 year anniversary since Victoria's diagnosis, she is well and enjoying every aspect of her life. She even graduated to the next swimming class this week. Victoria Grace, you truly are a conqueror in God's strength.

 

Thank you again for your continuing prayers and support.

 

Love

Ken, Wendy, Marshall, Charlotte, Victoria and Alexandra

11 January 2013

We have had 4 great days at Harry's House so far. It is a beautiful house, and absolute retreat. I cried for about an hour when we arrived here, overwhelmed by the generosity and thoughtfulness of everyone who has contributed to this house. Meanwhile the children ran from room to room checking out all the appointments and reporting back that every bedroom had a TV and DVD player - what a treat!

 

It has been so good to get away and have a break from 'normal' life. Although it is clear that this retreat has been built with a specific group of people in mind. In one of the kitchen cupboards are the stunning purple plastic gloves, vomit bags and lots of medicine measuring cups and syringes.

Yesterday we went on a family outing to the John Hunter Hospital for Victoria's chemotherapy. The adventure started with all the children watching Victoria's port being accessed, and then watching the containers of blood go up the shoot to the pathology department.

Whilst waiting for the blood test results, we went to see the physiotherapist. Victoria's splint has been hurting in a couple of places so she has not been wearing it for the past week. Not having the splint on makes a huge difference to both Victoria's gait and confidence.

The physio advised that the problem is with the tightening of Victoria's leg muscles most likely due to less activity (ie more resting due to tiredness) and the chemotherapy. So the physio made a boot for each leg for Victoria to wear at night time to give both legs a good stretch.

Victoria thought she would like different colour boots
for each leg .....

However, we only took the left boot home with us, as the right one didn't quite have the correct stretch position. Next week we will visit the physio again and try the splint on, to see if Victoria's foot and leg are better positioned in it. Possibly the physio will have another attempt at making a night boot for the right leg.

After the night boots were made, we went back to the Day Unit. Victoria's blood test results were good. She was able to have the chemotherapy.

After the treatment we visited the fairy garden and the Starlight Express Room. The girls had a fun time making lots of crafts with the Captain Starlights and volunteers.

Captain Starlight gave them each a woollen doll that had been made by some local high school students.

 

 

Marshall had fun playing all the electronic gadgets!

 

 

All in all it was a very successful hospital visit, with every family member getting more appreciation of what Victoria goes through each week, and the challenges she faces.

A specific prayer point this week is that Victoria's leg muscles will stretch as required with the use of the night boots and the daily stretching regime.

Here is an encouraging scripture I read this week ...

God can do anything, you know - far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us. Ephesians 3v20a The Message

Thank you again for your prayers and continued support as we continue to trust God with Victoria.