Friday, May 1, 2015

Triumph, tears and trust

As you can see by this photo Victoria is continuing to live life to the full. During the April school holidays Victoria and Charlotte went on a Camp Quality Camp. Victoria is pictured here with her wonderful companion Naida, who made sure that they synchronized the colour of the camp quality shirts each day. Victoria had a fabulous time at the camp, drumming, rock-climbing, ten pin bowling and doing copious amounts of craft. I know I have said it before, but I will say it again, we are so grateful to Camp Quality, the organisers', volunteers and people who make donations. They have helped our family immensely.  

Camp Quality also arrange Family Fun days. In April there is was a family fun day at the Toboggan Hill Park at Nelson Bay. Once again we all had great fun, lots of laughs and screams!

The park also had other activities such as hot ice skating, which all the children participated in. 

It was great to see them each set themselves goals on the 'ice', and achieve them according to their various abilities. Another new experience for them all, thanks to Camp Quality.

Victoria's strength and range of movement of her left arm and leg continues to improve. She is very diligent in doing her one hour of stretching each day. In the holidays we took advantage of the non-school time to do some extra physical therapy, alternating daily between hydrotherapy, bike-riding and scootering. Thankfully Victoria enjoys all these activities and is motivated by goal setting. With the bike-riding, she rode 4.3km in 54 minutes, and at the next session she reduced her time by 4 minutes. She is yet to reach her goal of riding without training wheels, but is continuing to work hard on building her strength up in her left leg. Balance is the real challenge for her, but we will continue to try.

There has been a lot going on for Victoria on the occupational therapy front too, with a view to reducing the amount of handwriting due to physical and cognitive tiredness. The alternative strategy is to use an ipad for narrative writing etc. So now Victoria is practicing typing each day too. Practicing the typing for 'typings sake' but also for the strengthening of the fingers on her left hand, to enable the smallest two fingers to move independently of each other rather than together. It is amazing how much one little body needs to do to remain physically functional. 

After only six weeks of daily typing practice, a review by the occupational therapist this week, left the OT speechless as she saw the improvement in strength and isolation movement in Victoria's left fingers. As for me, it bought tears to my eyes to see her reaction. Victoria works so hard at all these activities. And they do put extra load on our family ( I am not complaining, it is just a fact!), making time to fit these daily exercises into an already busy household. They also reduce the time I can spend with our other children. Thankfully we have received some funding to enable someone to come twice a week to help out with the exercises. This has made a big difference to our afternoons, and provided some variety for Victoria, and allowing me to spend more time with the other children.

The grim reality of some childhood cancers has been very much top of mind over the past couple of weeks, as a beautiful little girl who we have gotten to know over the past few years passed away. She was a champion who battled neuroblastoma from the age of 8 months for 7.5 years. Her family has been an inspiration to many who have entered this journey in that time period, including us. At the Celebration of her life last week a poem was shared called The Brave Little Soul by John Alessi. If you have ever wondered why children especially, have to endure such suffering, I feel it is worth reading. It may to help make sense of why there is such suffering. Click on this link if want to read it - The Brave Little Soul. It could be a good idea to have a box of tissues near by.

There are many practical things we can do to help those who are suffering with cancer, and one is to give blood. On Monday when I gave blood I read that 34% of all blood products donated are used by cancer patients. So if you are physically able to give blood, I encourage you to please give and give regularly. One donation can potentially save up to three lives. We have a Club Red group called The Conquerors, which has currently potentially saved 90 lives! So if you are going to give, please join our group - The Conquerors.

Thank you for continuing to uphold Victoria and our family in prayer. We know that it is by the grace of God alone that she is still with us today, and thriving despite the tumour and its impacts. Some days are definitely tougher than others, particularly over the past few weeks, but we continue to put our hope and trust in our God. This quote sums up how it is some days ....

Sometimes belief is off in the sunshine while I'm coated in fog, cold and uncertain, trapped by a sky that feels too heavy to penetrate. But hope lives here, still; God's Word on my brittle heart, full of possibility, already dripping through the cracks. (from Found by Micha Boyett  p143)

Thank you for praying for us, loving and supporting us. We will continue to declare - Victoria - victory and conqueror, Grace - favour and blessing.

Every word of God is tried and purified; He is a shield to those who trust and take refuge in Him. Proverbs 30:5 AMP

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