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

HAPPY 21st TO MY F.E.D

Twenty one years ago I gave birth to a beautiful baby girl. She gave me quite a shock because she arrived five weeks and one day too early on a very humid night. When I woke her father at 11 pm to tell him my waters had broken, he didn't believe me at first. But he had no choice really and soon we were flying out the door to the hospital. We were so young and so naive and so inexperienced that we forgot to take a bag of anything with us. You know what I mean - clothes, toiletries, baby stuff! We had nothing with us. Looking back now it was hilarious!

That night a new midwife was doing her first shift in a new country hospital. She was told to expect a quiet night for her first night and within two hours she got an emergency. I remember her ringing the doctor who was not too pleased to be woken up. Apparently she made the huge mistake of ringing the doctor before examining me herself. The poor woman got yelled at but there was no doubt my baby was on its way, so she managed to squirrel out of any more doctor tongue lashings.

Like her sister two and a bit years later, she was too early to be delivered in a country town hospital and the Royal Flying Doctor plane had to come up from Perth to get me. Ashton was born the following day at 2.59 pm in between calls to my closest girlfriends.I have never seen such a look of delight on my husband's face as I saw that day.

The feeling of holding your first baby in your arms is quite inexplicable. The sudden rush of love
Iand wonder when you look down and finally meet your child can be compared to nothing else. You love all your children equally but the wonder of the first birth is just so special. It was so interesting to read another blogger #Lysa Wilds from #Welcome to My Circus describe exactly the same feelings in her recent post about her son, who coincidentally has a birthday this week too.

My daughter woke up in hospital on her 21 st birthday. She had surgery the day before which did not achieve what it set out to do, so it could have been a downer. But with the help of the nurses, doctors and friends and family we still made the best of the day. Eventually Ashton got discharged and home we went for flowers, cake and visits from family.

The health sagas are not over. We had hoped for the best of 21st presents. We had hoped to be de-fistulised. However, it wasn't to be this time.Once again I thank God for a doctor who knew when to stop rather than take risks.

So now its time to concentrate on a 21st party and on life. She will be reviewed by the doctors in a few months and a new plan of action will be made.We hold our collective breaths but till then life goes on.

Happy birthday to my favourite eldest daughter. 

Till next time...xxx

FESTIVAL OF ASHTON

So it's Sunday afternoon and I am having a lazy time. Last night a group of us went to see Ciara in her production called "A little rain must fall". It was lots of fun but with a message to take away about risks and consequences . I loved the colour, the activity, the loudness and the general storyline. The production is part of the "Perth Fringe Festival"and because there are so many acts going on, Ashton and I are going back tonight to see another production. We're actually going to see a comedian because I think before this week starts we  need a good belly laugh.


So let me catch you up on this family's sagas. This week as I've mentioned already is Ashton's  21st birthday. Her birthday is on Thursday and her party is next Saturday. We have approximately 90 to 100 people coming and it is going to be a fantastic night.

Only one thing stands between today and the rest of the week. No, it's not the fact that the uni year starts tomorrow. No, it's not the fact that some people still have no idea what to wear to the party. It's all about the fact that on Wednesday her surgery has been brought forward. What the hell!

You might remember that she still needs another operation. There is still some fistula in her jugular vein and the doctor (please bow) wanted to get her back into theatre as soon as possible to finish the procedure. The original date scheduled was March 20 and though it was a bit of a distance, we sort of got used to the idea.

Which is why we're all a little in shock that the procedure has been moved to Wednesday 25th February. She was given the option of saying yes I'll have it on the new date or no keep March 20. Rather hard call to make isn't it? Whichever decision you make it is full of negatives and positives. We all eventually decided health must come first, so she has opted to have the surgery on Wednesday 25th and will therefore be waking up in hospital on her 21st birthday. Never in my wildest dreams did I see my child waking up in a high dependency unit on her 21st birthday after her 15th major procedure. She has told the doctors that she expects flowers and cake. The bets are on as to whether they will follow through.

Just to see a smile on her face, Mark and I have already given her our birthday present. If you are not on my Facebook list you will not have seen these photos so I will include them because they have made made a lot of people smile and a couple cry. It's just so nice to see her happy.

We are so hopeful that this procedure will be the last BUT all we can do is hope that this will be true. This June it will have been two years since her diagnosis. That's a huge chunk out of her life and out of ours.

See you in the hospital.

Till next time… Xxx