For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope. Jeremiah 29:11 NKJV
On Tuesday this week Victoria had her 25th MRI. Yesterday, 12th July 2018, we received the results. The tumour is stable. There has been no growth for almost 5 years now. We have a faithful and merciful God. We continue to declare the scripture from her dedication 10 years ago ...
Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the LORD forever. Psalm 23:6 NKJV
The oncologist is confident that the tumour will not grow now and has ordered one final scan, in 12 months time. Again, we have a faithful and merciful God. We will continue to pray for full healing in Victoria's body, brain and eyes. Nothing is impossible for our God.
Thank you for standing with us in these past almost 8 years, believing that our God can do miracles, and supporting us in so many different ways.
For Victoria the last 12 months have been a period of building greater resilience, both in relation to pre-scan anxiety - of which none was evident for this latest scan, praise God; and also in terms of physical training - being more efficient in all movement.
Victoria is often seeking out ways to connect with other children who have disabilities. This might be at the swimming or athletics competitions, chatting to the other children and then asking for contact details so she can communicate with them between competitions.
Searching the internet and watching inspiring videos of people who are living life despite their physical challenges, is another activity Victoria finds helpful. One of her favourites is the Yes I can, video, an ad for British 2016 Paralympic team.
Another resource she found was a series on Netflix called, Alexa and Katie, about a high school student having treatment for cancer. I watched a couple of episodes with her, and there were some very real moments, bringing tears to my eyes, grateful to a team of people who did not shy back from tackling a difficult subject.
Physically the last 12 months have been a challenge too. June 2017 Victoria started experiencing pain in her left knee which lead to an 8 month break from swimming, running and dancing. Not a happy time for a child who loves to be active. However she did a lot of rehab to make her body stronger, and we now have a little mini gym at home now!
Despite the lack of swimming training for 8 months, the time in the gym building strength paid off, as at the swimming competitions earlier in the year Victoria improved all her PB's, some by 12 seconds.
We are looking at ways to help Victoria further develop her swimming. On Sunday we attended an event facilitated by CPSARA (Cerebral Palsy Sporting and Recreation Association) to connect with paralympians, establishing mentor relationships for the young aspiring athletes and their parents. It was a very informative and fun afternoon.
We are grateful that Victoria enjoys swimming, and always has, right from the very first session of rehab she did with hydrotherapy when she was only 3 years old!
As Victoria gets older and is understanding more about how her body functions, she is taking more responsibility for maintaining and improving her strength and movement. For example, the OT recommended that Victoria do some regular stretching up of her left arm to help keep the full range of shoulder movement. So Victoria came up with the plan of putting the dippits that she enjoys as a snack, on a shelf high up in the cupboard. This would then force her to then use her left arm and hand to reach up every time she wants a snack - which is quite frequently!
Earlier this year Victoria had the opportunity to be part of a program trialing carbon fibre AFO's (splint) for children. This different type of splint has greatly improved Victoria's walking, enabling her to walk with a more even pattern, expending less energy, so reducing fatigue.
We are grateful to Cerebral Palsy Alliance and NeuroMuscular Orthotics for giving Victoria the opportunity to be part of this trial.
So there has been a lot going on in the past 6 months, and not only for Victoria, but for our whole family. At last we appear to be moving into a new season, with everyone thriving in different ways. It has been a long time coming and we are grateful for this change. On my blog last month I shared about this sense of changing seasons, here is the link if you are interested in listening to it ... New Day Dawning. I pray it is encouraging to you for whatever you may be facing today.
Another little project that has been going along in the background for the past few years is my book about the first three years of this journey. Currently it is in production getting ready for print and e-book publication, and I am recording it as an audio book. For anyone who is interested the audio recording of the introduction and chapter 1 are available for free here. Hopefully the three versions of the book will be available for purchase by the end of the year. Along with our story the book has a lot of practical information to help families who find themselves in a similar situation.
Thank you again for all the prayers, support and encouragement. I sometimes find it hard to believe that I have been saying those same words for almost 8 years! But they are so necessary as we know this is not a journey we can do alone. Please know that you are part of every victory that we have experienced as a family over these years. Thank you.
Yet even in the midst of all these things, we triumph over them all, for God has made us to more than conquerors, and his demonstrated love is our glorious victory over everything. Romans 8:37 TPT
