My Blog

Time has flown by so quickly these past couple of months.  It has been an incredibly busy time.  July’s MRI was clean  with no sign of re-growth.  Whew!!!!   My bloods remain low but they have not had to transfuse me yet thank goodness. 

The August 3rd hospital admission was a bit rough as I ended up quite sick after the treatment.  It made me realize how lucky I have been tolerating the earlier treatments.  Homecoming is always a blessing especially after a stay in hospital.  I  did an interview with the Telegraph this week and they took a cute picture with the kids in the wheelbarrow.  Still not used to seeing pictures of me looking so different!  Barry's Mom  and Dad are here and they are simply a Godsend.

I have been the subject of a documentary about brain tumours filmed by a lady named Karen Willing and her crew from Screen time.  They were a lovely and very professional crew to work with!   Karen approached me about doing a series of documentary interviews for ABC and now that it is finished we should get to see the completed film in the next week or so.  Being filmed without hair, makeup, etc etc is like having your ego stripped bare and is an interesting and revealing experience.

I have decided to try and volunteer at the school and introduce some healthy cooking classes for the kids.  The kids love it and so do I.  It is great therapy for me.   It’s a very exciting project as there is much work to do in school canteens across Australia.   This is part of my plan to create some great memories for my kids as well as others. Charlie and Jack love seeing Mom at the school doing stuff and I love being there.

Wow August 15th Benefit!!! Where do I begin?? Held at St Patricks Estate which is an amazing venue and very special in itself.  I can see why Nicole Kidman had her wedding reception there. I have to say it was simply a night that Barry & I will never forget! There was over 300 people there.  I was not sure I would be able to get through the night without becoming really emotional but I  was fine. I was vibrating from the energy and love that was in the room - even for  weeks afterwards.   I am still in awe and a bit speechless. A first for me. There were so many beautiful parts to the evening. 

There was a fantastic fashion show by Lotus Blue (An upscale ladies retail dress shop owned by my dear friend Suzanna. She did an amazing job of styling the Mums of St Mary's. They certainly could have passed as professional models!   I was so appreciative of them getting up there - which is not an easy thing to do in front of over 300 people.  Well done ladies! 

Annie, Elise, Vicky and her students did an incredible job. It was  flawless and professional but also intimate and personal. The entertainment was beautifully orchestrated and the band very talented. They dedicated a  few songs especially for me which I found very touching, especially when the violinist looked at me with tears rolling down his face.  The food was fantastic and Felix, the head chef, did an amazing job.The chocolate fondue at the end of the evening was delicious. Yummmm. There were many heart felt speeches and lots of tears. Elise did an exceptional speech that really touched my soul.  The two auctions both live and silent were extremely successful.

A  highlight was when  a friend of mine bought a wooden wishing well (made by one of the student's 85 year old Grandfather) for an outrageous amount of money and then gave it to our family. I will always  cherish it and  am in the process of developing a family ritual with it.  Thank you Karen and Chris .

 I was surprised to see some dear friends of mine Bridget and Digsy. I met them a few years ago when Digsy(who was 13 at the time) was diagnosed with Leukaemia.    He was a huge inspiration to me as he always had a kind word and a smile despite the pain and misery he was going through. I am so thrilled that he is in full remission and have no doubt that he will stay well forever. He came up on stage and told his story and it was a very touching moment. Cam, a friend of mine, bought a celebrity surfboard and gave it to him at the end of the evening. He was so thrilled!!! It was fantastic to see him so happy and so well.  It was  a  very selfless gesture which still brings a smile to my face when I think about seeing the look on Digsy's face.

Vicky bought Six buckets of toys for our boys  You should have seen their faces.... We put some away because there were so many of them. She has boys and bought some great presents. Mike Baird who is a local MP got up and had a great speech that was so sincere, it melted my heart.

Mostly the thing that still puts a smile on my face is knowing that a whole team of people decided to do this for me and my family. You know who you are and I cannot thank you enough. I feel so blessed to have so many very special friends that have really gone above and beyond the call of duty. It has made this battle much easier  knowing I am not in it alone.. That feeling in  in my heart forever!! Thank you for such a beautiful gift of love.
 
 My bloods have been too low to have Chemo so they had to postpone my treatment by a week to let my levels recover. My sister arrived this week  and it was sooo great to see her. I think she was a bit shocked to see me looking so well. Apart from a few physical changes, I am more or less the same, just at a slower pace. The boys loved hanging out with Aunt Corrine and she played lots of games with them and spoiled them rotten. It was sad to see her go home. I know she will tell the rest of my family how well I am coping and put their fears to rest.
 
I have just completed my last ICE protocol. WOOOHOOOO It was cut short as my bloods were too low to accept a full dose but I was thrilled to be out in a couple of days. I cannot tell you how thrilled I am to be finished this stage of treatment. I was really starting to dread the hospital trips every couple of weeks and started to become a bit flat emotionally.  I have had many scares of various types in the past couple of months but overall am coping well. Seizures remain my biggest threat. So far I have had a few but thankfully they have been minor ones. I am now having a four week break to recover,  then an MRI. Depending on the results of my MRI and my blood results, I should resume Oral Chemo 5 days a week for 6-8 months. Hopefully, this can be managed from home.  
 
The weather is becoming warmer  and my Sister Joan is coming out in three weeks;)  Apart from feeling very tired I am thrilled to be able to do most everything that I normally do. The boys are doing well and loving having Nanny and Poppy here as well as visits from my family.
 
Will keep you posted after my MRI. Love to you all  A xx