Audrey Rose Myrden passed away peacefully late yesterday at 5.05pm.  

Barry Myrden

x o

 Nov/Dec 2010

It has been a crazy few months to say the least. With buying the house, filming with ACA , moving in, then more surgery. All of us have been under a lot of pressure. However, I feel over the moon to have this all behind us and living in a new home. The house is simply amazing and the experience was one of those once in a lifetime things that rarely ever happen but did!! It was a fantastic  experience and really left me feeling so blessed and very loved and supported by a huge network of people. The demolition of the house was amazing to watch and the boys really enjoyed getting involved also. I am glad we got to be on site and meet many of the workers. We got to see the house stripped bare and then were told to leave the site and await their phone call. We got to meet  everyone who kindly offered their services and came back day after day for two weeks. Unbelievable!!

We settled on Oct 29th and that evening, they did a house reveal and blindfolded us  and walked us to the house. I have to say I was stunned and very thrilled with the outcome. Sarah asked me what was my favourite part of the house and I said the yard and the deck and my bedroom but really everything was my favourite. The house has such an amazing energy. Everything is brand new and the house is so light and inviting. The yard is huge and the kids are overjoyed. We decided to stay the night. It felt like staying at a holiday home. It is now mid Dec and I have to say it is only now starting to feel like home. It all happened so fast. I am blissfully happy. The boys love the house and Barry has a permanent grin on his face.

 The live house reveal was on the 8th of Nov which was a Monday. As luck would have it, my oncologist admitted me to the hospital that morning. I had a virus and my bloods have crashed big time. I think it was because of one of the seizure meds that they added  to my cocktail of drugs.  Thank goodness my dear friend Leoni stayed by my side the entire day. I had to spend the day in Emergency in order to get admitted to the Neuro ward?? Needless to say I had to watch the live house reveal from the Hospital lounge. It was all I could do not to run out of there to be with Bear and the kids. I felt so sorry for Barry. He had the massive task of getting me to the hospital, getting the boys to and from school, packing up our old place and moving and unpacking into our new place all with 200 people on our front lawn! I was the one who started all this and could not even be there for the reveal.  It was heartbreaking. Needless to say I did not sleep a wink that night.

 My surgery did not take place until the 15th. I contracted a bad virus and I had to be transfused as my bloods did not recover in time for the surgery. Second time around it was a much different experience. I was much calmer and there was hardly any fear, unlike my first operation.  The operation was deemed a success and although I have a huge scar from one ear to the other, 4 days later I was allowed to go home. Feeling a bit sore but thrilled to be home with all my boys in my new house. My treatment started 2 weeks later. Radiation 5 days a week for two weeks.  The histology came back as a high grade GBM so Dr Back felt that despite giving me a lifetimes dose of radiation the first time around, more was needed. This increases my chance of seizures and stoke significantly. The location of the reoccurrence was on the frontal lobe this time on the opposite side and we got it relatively early so Dr Back said he could safely target it with a dose of radiation. With that, the other part of my dream team, Dr Helen Wheeler, suggested that I do 2 weeks of a very low dose of chemo. It works in conjunction with the radiation.

 
Dec 20th
It is only 5 days till Xmas and I have hardly done any shopping. Yikes!! Feeling overwhelmed is an understatement. I am feeling really tired and trying very hard to overcompensate with the boys but it is leaving me feeling exhausted. After speaking to a friend she suggested that I keep it simple… Thanks,  I have taken that on board. I see my surgeon for the first time since my surgery today and am anxious to hear what he has to say.  I am determined to have a great Christmas . I am off the steroids so that is a good start. We simply love the house. Rudy the Swiss builder, was back today fixing up a few things. He is such a beautiful man.  Tues ACA is going to do an update. Looking forward to seeing everyone again. They are so amazing all of them. I have kind of missed them. Strange  but  I feel so close to them as they all had a big part to play in helping us get our home.

 Merry Christmas Everyone, Thank you to everyone for their kindness, dinners, cards, warm wishes. I feel very loved and supported. Will keep you updated after Tues. Please have a healthy and happy New Year. I look forward to having a relaxing, fun filled Xmas with the family.

 Best Wishes

Audrey and family

Latest Update from Audrey - July - Nov 2010

July 2010

Living more, planning less…

It has been a couple of wet and cool months but I can feel summer around the corner. I look forward to not having to wear 4-5 layers of clothes in order to keep warm.

The boys are enjoying school holidays and they are always busy with fun activities. A break of routine is always good fun. We have started dancing to Michael Jackson cranked in the living room. What fun. Charlie now asks for it every night. A good way to let our hair down and have some laughs. This music brings back lots of great memories for me. They are just finding out about him. O.k. I’m starting to feel really old now.

Barry and I have started Bush hiking together. Because of my lack of balance he has bought me a walking stick (proper hiking one). I did not like it at first but it was soon obvious that I needed it. Both Barry and I love these hikes. I am surprised that my fitness is good enough for these 3 hour hikes.  The scenery is so stunning and you really feel alive and in the present.  There are absolutely no distractions except Mother Nature in all her glory and Barry telling me to speed up! It has proven to be one of the best things we have done in a long time. Why didn’t we do this years ago??? Too busy to stop and smell the roses or in this case the Frangipani’s I guess.

Thalidomide:

A drug used in the 60’s to help Pregnant Mother’s with severe morning sickness. This proved to be a very bad idea. Turns out although helping with severe morning sickness it cuts off blood supply to new growth. Thus the Thalidomide babies were born without limbs. It is a banned drug in Australia and most parts of the world.
It has recently been used for Brain tumors to help stop blood flow to any new tumour  regrowth  with promising results. It also is used for stimulating bone marrow. As mine has been wiped out, they are hoping it will bring my blood levels up. Leukemia is a real threat if they continue me on Chemotherapy. I will let you know if it works. Fingers crossed. There are many side effects and some potentially fatal ones. It is worth the risk I think considering the alternatives.

Rollercoaster

July has been a challenging month. My dear friend, Annie’s Dad passed away and that was very sad. However, he left a beautiful legacy and a lifetime of loving memories. The funeral was confronting for me but it was important that I go and show my support. I am glad I did. I learned much about her beautiful family and her Dad left a lasting legacy.

I had a few health challenges these past months. A contracted a virus that triggered ” Periocarditis” (Inflammation of the heart muscle) It honestly felt like I was having a heart attack. (Stabbing pain in my chest around my heart muscle.) Apparently, Neurofen and bed rest was the remedy  for this.It took about a week for it to resolve. Hopefully, there is no permanent damage. I was starting to think it was the thalidomide that caused this upheaval.  I have never experienced anything like it before. My Oncologist assures me it was caused by a nasty virus.

August 2010

Family and Friends

My sister Elaine came to visit for 6 days. Although short and sweet it was really nice to see her. The kids especially had a great time. I do feel bad for them sometimes as they miss out on extended family being so far away.

What a crazy fantastic month!!!  Annie and Vicky and their students from ICMS once again had a spectacular fundraising dinner for us. It was held at Manly Golf Club. There were so many highlights. Where do I begin?? Annie and Vicky arranged for me to meet with another GBM Pnet survivor from Canberra,” Sarah Mamali”. We got to meet and had much in common. We shared a similar treatment protocol and she has 2 young boys also. Not surprising we had an instant connection. When I read her blog and read that she hiked the Kakoda Trail after being diagnosed, I said to Barry, “Right more living less planning”. That was when the penny dropped and I realized that I had done enough planning and it was time to do more living. That is easier said than done. I can honestly say that I feel that I have addressed all the important things that needed doing.I felt it was the responsible thing to do when you have such a young family.

It was an elegant evening from the beginning to end. There was a beautiful young Norwegian student named, “Silje” who after meeting me at the College went up to her room and wrote a song called, “Audrey’s song.” She played acoustic and sang this absolutely beautiful song. There was not a dry eye in the room. The lyrics are so powerful. She has an exceptional voice. A very moving performance.

Helen Wheeler, my Oncologist, also came and spoke at the dinner. I was really touched as I know how busy her schedule is. Having her refer to me as a long term survivor, at 18 months was pretty confronting for a lot of people there. Everywhere I looked there were people very near and dear to me. I felt very supported, loved and grateful for all my blessings. It was also nice that my sister Elaine was there also to witness what an amazing support group of friends we have around us.  She got to meet a lot of the very special people in our lives.

Vicky organized a tub of gifts for the boys. They were thrilled needless to say. We kept some and gave some to the Far West Children’s hospital. The boys love giving back to needy children every year.

I did not want the evening to end. As always it feels like you hardly get a chance to speak to everyone.

Sept 2010

Medical Update

I am now on a double dose of Thalidomide as well as Oral Chemo. I am not liking the Thalidomide and my body is taking a while adjusting to the many side effects. But if it works I will gladly  put up with it. It seems to be keeping my blood levels from dropping too low. This will enable them to keep giving me more chemo and not contracting Leukemia and hopefully, keeping the Cancer dormant. It is a fine balance. I am doing everything in my power to combat all the damage these drugs are doing to my once healthy organs. See future blogs for, “Things that I have learned”.

Boys School

Charlie celebrated his confirmation this month. His Saint name was Luke. I was thinking, “Great he chose that name because of Luke Skywalker from Star Wars.” Was I ever wrong?? I felt bad when he said, “I chose Luke because he helps sick people” Seven years old and so sweet.

Audrey’s Song

Silje recorded, “Audrey’s Song.” in the studio and it sounds fantastic. Annie dropped off a copy of it and it is stunning. I stayed up till 2 am playing it over and over writing out the lyrics. It is very powerful and moving. I cried a river of tears but it felt good for my soul.

Johnny’s 80th

It was so nice to celebrate the birthday of a dear friend of mine Johnny who has been like a surrogate Father to Barry and I. I laugh when I think back to when he came to visit us in Calgary, Canada. The day he arrived it started to snow and it did not stop for two days. It broke a record for the most snowfall in 113 years! We dressed Johnny in Oven Mitts to go for a walk. Those were great memories. He is a very special caring man.

Real Estate Challenge

We were not having any luck finding a house in our price bracket so it was suggested to me that we do, “a real estate challenge” with the media. After much thought and careful consideration I agreed. The filming was over a period of several days. The Channel Nine crew was exceptionally friendly and professional. The segment aired on August 16th and we received an overwhelming response of offers to help. “A Current Affair” said that once we bought a house they would help fix it up and make it over. WOW!! The search is on.

October, 2010

Sold

After much searching and several failed attempts. We finally found a suitable house. Yay! We put an offer in to the vendor earlier in the week pre auction and they rejected it. With our limited budget, (We managed to hang on to a small down payment and we were preapproved for a modest mortgage) I was not holding out any hope for a successful auction bid. Barry took the kids to a concert at the Entertainment Centre while I went to the Auction. A good friend and realtor, Leoni Klaric went with me to bid on my behalf. She said to me 2 minutes prior to the auction that if she bid over our budget, not to panic???   She and her husband Rob plus Grant Williams (Channel Nine) had discussed it and offered to kick in a little extra to secure the home. They were going to gift us the difference. I was in shock!!! I was so overwhelmed by their generosity. We won the auction! Although the house needs a lot of work and now having to manage a huge mortgage, we still are quite happy to have a place to call our own.

A big case of the worst house on the best street for sure. There is talk now of a huge home renovation makeover. We are speechless. The amount and level of generosity offered to us is truly overwhelming! We are extremely grateful to all of you both here and abroad for all the love and support you have shown us!

November 2010

Latest and greatest.

After a few stressful weeks of anxiously waiting we settled and moved into our newly renovated home. It was a monumental effort by Sarah, Stef, Brad, Geoff, Lisa, Rob, Leonie, Cathy… and the entire team but they managed to pull it off. We settled on the last day of renos and the house was revealed to us 2 hours later. We are utterly speechless. Everything was done! Everything to such a high standard!! I know I said it before but we are incredibly overwhelmed!! I will update further with all the details of the new place next week when we sort out the new internet access.

Thanks again everyone!

Audrey, Barry and the boys.

Nov/Dec 09
 
Met with my surgeon and he seems pleased with the recent scans. I mentioned pain in my jaw and he said it was probably due to having to cut through my chewing muscle during surgery. Something I can deal with.
 
Christmas parties/kids parties/school activities keep us hopping. My two sisters Theresa and Carol came for a three weeks visit. It was really sad to say goodbye to them. I was sick for one of the weeks they were here and the time flew by really quickly.
 
I have hit a bit of a wall with my treatment.  My Oncologist has suspended my Chemo until she can find out what is happening with my bone marrow. Basically she said they are doing me more harm than good as my Bone Marrow is not recovering at all. Jan 5th I will have a MRI and follow up with Oncologist to reassess what to do. She has told me most likely a bone marrow test is in order. Take each day I guess. It appears it is out of our hands.  There are 4 more days until Xmas so I plan on enjoying  it fully with family and friends. Merry Christmas Everyone!!!
 
Love Audrey xx
 

 Oct/09
 
 It has been 6 months since my diagnosis and so much has happened. I guess that would be one of the reasons why I feel like a totally different person. Living day by day, week by week is a new philosophy for me. One that is taking time getting getting used to. My September MRI was clear. My Oncologist said that she plans to keep me on Chemo indefinitely. If she takes me off of it she thinks the tumour will come right back. The trick will be to get my bone marrow working again. My bloods remain dangerously low and to date have not recovered like they should. I have also had a couple of more minor seizures. My seizure medication has once more been increased to help with this. I find myself dreading going in and out of the hospital now. It is so upsetting for the kids. We seem to take 10 steps forward and take 20 back. Still I am grateful that I remain well enough to do most things.
 
We spent a weekend away at a friends cottage in Kangaroo Valley which was on their farm. It was just what we needed and the kids had a ball looking at cows and playing outside all day and only coming inside when it was time to eat. Thank you to our beautiful friends for inviting us down.
 
My sister Joan came to visit for three weeks from Canada. It was great to see her and to spend time together. Made me a bit homesick for family when she left.
 
 My husband Barry and our dear friend Vern rode in the 24 hour mountain bike relay in Canberra. The Campari Crazy's Team with Dean Gale and company  also rode and both teams raised money for Audrey's wish. Thank you to everyone as I know it was physically challenging.
 
The cooking classes at St Mary's were a lot of fun and the kids really seem to be enjoying it. I love  listening to them laugh. Great medicine for the soul.
 
I decided to host a Halloween party for the kids. We ended up with half the neighbourhood but the kids had lots of fun looking at all the  spooky decorations in the yard, bobbing for apples and trick or treating around the neighbourhood.
 
At this point I am on Oral Chemo one week on and one week off. My bloods remain low but I am relatively healthy so I cannot complain.
 

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