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Wednesday 15 April 2015

A COW AND A CALF

I am publishing the following with my daughter's permission. It is her decision to share this news and she has not been coerced by me in any way. My daughter is 21 and has an intelligent, strong mind of her own.

As many of my family and close friends know, back in January I got tested for Cowden syndrome. Cowden syndrome means that I am prone to getting lumps and am at a higher risk of getting cancer. It is also known to be the cause of AVM's to grow so fast (as demonstrated by the AVM that was growing in my brain.) 1 in 200,000 people suffer from this syndrome in the world. 2 of them in WA.
Yesterday I was the 3rd person to be diagnosed in WA with the condition. This now explains the reason behind my brain problems. Am I happy that I have been diagnosed with this condition? No not at all. But it's now nice to finally have an answer as to why I have been so ill for these past two years.

Cowden's is not curable. It is something that has been with me since birth. Why am I writing this on here? Because I want people to know that I'm ok. There's is no label stuck to my head that says that I have Cowden syndrome. I am going to live life to the best of my ability, as I have done so for the last 21 years. Thank you to my parents, sister, extended family and close friends for their love and support over the last few days. I will continue to ride this crazy train that we call life, to the best of my ability xx Ashton

Of course as her parents, Mark and I are shattered because we held on to a sliver of hope that the result would be negative. However realistically we are not surprised, the evidence has been mounting for some time.

There are some differences to my diagnosis and my daughter's diagnosis. I was 44 when diagnosed. She is 21. I spent a long time wondering why things were happening to me and wondering why I was different. She is diagnosed at a young age. She knows what the problem is and I can not begin to explain the relief this brings. It sounds ridiculous to use the word relief but not knowing hurts and drives you crazy. When you know, you can plan and be pro-active. Also, the doctors take you more seriously.

In the 5 years since my diagnosis the genetics field has literally exploded. There are things I know now that I didn't know 5 years ago. There are discoveries being made all the time. It is quite possible that within Ashton's lifetime there will be a way to manage this situation, this genetic condition, better.

Yesterday, Ashton joined the online support group COWDENS SYNDROME AUSTRALIA. Again it was her decision. She was welcomed into a warm, protective environment and promised support by most of the other 35 members in this country that also have this condition. She was overwhelmed by their kindness and offers ofhelp.

Most importantly, Ashton has me. This is not a condition that is unfamiliar to her as she has seen me live with it for a while now. I'd like to think that will in some way help.

I've often said that our life is in God's hands. I firmly believe there is a reason for all this and that HE knows what is best for us. My diagnosis and my various conditions have brought out qualities in me I never knew I had. I'm sure the same will happen for Ashton. Everything certainly happens for a reason.

Thank you for continuing to follow OUR story. I still can not get my head around the fact that when I started this blog, it was about me and my journey. I never, ever in a million years expected this twist to occur.

It helps so much to share the story. Please understand this is therapy for me and will continue, with my daughter's permission when necessary. I respect the fact she is an adult, at all times. I am also aware of the impact on my other daughter and husband and word my phrases carefully.

Please continue to pray for us. 1 in 200,000 and we have been struck twice.

Heads up and best foot forward.

Till next time...xxx




30 comments:

  1. My prayers are with you and your daughter. May you continue to draw strength from our Heavenly Father and each other. God Bless You.

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  2. It is beautiful that in the wake of this news your concern is that your friends not worry. I admire your strength, and I am so glad that your daughter has it to lean on throughout her experience with this disease.

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    1. a lovely thing for you to say. thanks xxx

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  3. I'm very sorry for you all and simply can't imagine. I'm glad your daughter has the benefit of early knowledge and your support. Hopefully, the road for you both will be a bit smoother moving forward.

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  4. I have never heard of this syndrome. You and your daughter are in my prayers .

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  5. A very powerful post. I wish you both well and I truly hope that there will be some breakthroughs in science soon for you!

    #CreativeBloggersNetwork


    www.erfmission.com

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  6. Ive never heard of this. I'm so sorry to hear you have been hit twice by this. I'm happy to hear you two have found a support group of others with this condition. May God Bless your family.

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  7. I am so sorry. I will keep both of you in my prayers. Your daughter seems to have a great attitude and I'm sure that will help.

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    1. She is amazing. Both my girls are. We are truly blessed.

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  8. I admire your strength and courage in how you are handling all this. Prayers for you both and wishing you both the best.

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  9. I just want to give you guys a big hug. You've got a great attitude toward this, and that will go a long way.

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  10. I'm so sorry to read this- it's one thing to suffer on your own, but even harder to know that your child is struggling with a physical ailment as well. I am impressed by your strength in facing what you need to deal with! I will be praying for you and your daughter.

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  11. Really appreciate all the supportive comments. Thanks to everyone.

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  12. Prayers for you both. May you continue with the strength to deal with this head on. You and your daughter are both to be admired. Thank you for bringing awareness to Cowden's.. I had never heard of it before. Invisible illnesses are so difficult to deal with - education helps so much!

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    1. Thank you so much. I hope you'll come back and follow our ongoing story.

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  13. Just want to send you both hugs and prayers your way! This must be hard on you both and you both seem like very strong positive women! Hoping they find some new things to help you both!

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    1. Thanks heaps. We are strong but sometimes being strong can be tiring and hard.

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  14. You display such strength and it seems your daughter got that from you. May you continue to trust God's guiding hand as He works in your lives. Prayers!

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  15. Absolutely fascinated by your blog name so will be checking it out shortly. Thank you for stopping by.

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  16. My and my son are pten sufferers from the UK!!

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    1. Any advice support between families would be amazing as there is almost nothing in the UK.

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    2. Feel free to contact me privately at taylorms@wn.com.au

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