Thanks to CCF (resubmit)

Our brothers and sisters from CCF (our church congregation in Israel) held a memorial service for Maria last Wednesday evening. Dear friends of ours from the US (who were in Israel with us) even Skyped into the service.

Maria would be embarrassed by what she would consider a fuss over her. I am grateful.

Since writing this entry my Google search bot came across a video of the aforementioned service. The link is http://video.aol.co.uk/video-detail/maria-parakilas-thanksgiving-service-israel/3107109681

Kathryn's prayer

Due to some sort of confusion at the Thanksgiving Service, the order was thrown a little out, which meant our dear friend Kathryn missed out on reading her closing prayer.

I was fortunate that Kathryn gave me a copy of her prayer. I wanted to share it.

Gracious and loving father


We give thanks again for the blessing Maria has been to our lives. We openly acknowledge our deep sadness in no longer having her here with us but find comfort and hope in the truth that she is with You.


Father, in the coming weeks, months and years will You continue to bring comfort and peace to our hearts. We pray this is especially true for Troy., Ben and Gabi and the extended Parakilas and Kaizik families. As the community of friends surrounding them, help us to be a tangible expression of Your love towards them.


Jesus, as we reflect on Maria's love and faith in You may it cause us to trust in, rely upon and draw nearer to You.


We rest in the promise that neither death, nor life, neither angels or demons, neither the present or the future, nor anything else in all creation can separate us from the love found in You.


Amen  

Donations @ service - thank you

As you would have read in my eulogy, one ministry very close to Maria’s heart was supporting the Voice of the Martyrs (VOM). VOM is a Christian organisation committed to:

• providing Support for prisoners and their families, and for the families of martyrs;
• equipping and empowering persecuted believers; and
• praying for persecuted Christians in their place of work and witness.

I'm pleased to say that over $1,100 in donations were given on the day. I added an additional amount, with the total sent today to VOM as a bequest of Maria's.

Some additional money was donated with specific direction to be given to the Cancer Council of Australia (as per an earlier request). That amount has also ben on-forwarded.

Ben, Gabi and I want to thank everyone for their generosity, which Maria would greatly appreciate.

Gabi's keyboard

Gabi has shown a desire for a while to learn the keyboard/piano. Maria and I planned to buy her a keyboard, but over the last couple of months that priority fell by the wayside.

Today I took Gabi out to buy her the keyboard, as well as a stand and bench/stool. The next step will be to find her a piano teacher after they return to school this coming Monday.

Australia Day Achievement Medallion received with mixed emotions

A little earlier this afternoon the kids and I went to my work offices in order for me to receive an Australia Day Achievement Medallion for work I carried out while overseas. There were three medallions issued, with me being the only person in Australia at the time to receive it. I'm humbled by the honour. Although what I received the award for involved much time and effort at the expense of seeing Maria and the kids (everything wrapped up only a couple of weeks before Maria fell ill), it is important to acknowledge it was a team effort with some of my staff/colleagues in Israel also playing important roles.

I was initially advised of the award a couple of weeks ago and it was my wish to have Maria and the kids present. Work was happy to facilitate this request. I was also unsure whether or not we would be able to make it as Maria was deteriorating at the time and it was hard to know whether things would transpire in days or weeks.

Albeit it won't the same meaning to me given recent events and Maria's absence from today's event, the kids were excited so I decided we should proceed. I also know in my heart that Maria would have wanted that.

I am happy that I was able to tell Maria about the award while she was still lucid and conscious.

The kids loved sharing the medallion and framed certificate. The Secretary of our Department was so lovely with them. They were excited that we got to travel in his special lift. After having a number photographs together he took time out to escort the kids around the Senior Executive area, including his office. I appreciated his time and genuine compassion shown to our today. A number of other senior members of the Department also voiced their support and flexibility concerning the time ahead and transition back to work.

Gabi's message to Maria

This message was written by Gabi and read by our niece Maggie.

Dear Mummy

I loved that your favourite colour is green like the trees, the grass, the leaves, the stems and other green things in nature. It was fun having girls’ days out with you. I remember when we went to the Biblical Zoo in Israel and to the Angelina Ballerina performance here.

I will miss you so much mummy because you are so kind and beautiful. You’re the best mum ever and I wish that I will be in heaven with you!

Love from Gabi

Ben's message to Maria

This message was written by Ben and read by our eldest nephew Nick.

Dear Mummy

I loved going to the beach and getting ice creams with you. I love you so much. Thank you for making me cool birthday cakes and taking me to lots of nice places. 

I am going to miss spending time with you, talking to you, hugging and kissing you. I love you so much.

Love from Ben

Eulogy delivered by me

Here is the text of the eulogy I delivered today for those who couldn't attend. Be warned that it is lengthy.

How do you summarise the life of an amazing person in only 15 minutes and do it justice? Well, I’ll try. I’ll share some factual information about Maria, followed by: (i) a summary of her battle; (ii) the things she loved; (iii) what I loved about her; and (iv) how the kids and I are coping.

Maria was born in Sydney at Crown Street Women’s Hospital on Friday, August 28, 1970. At that time her parents (Baba and Mama) and sister Effie were living in Marrickville. Maria would return to the suburb many years later to rent our first place together after our honeymoon.

Maria started her schooling at Randwick Endeavour Primary School in 1976. In her final year she was the School’s as Vice Captain. She then went on to Sydney Girls’ High School from 1983-88. In her final year she was a Prefect. She also worked part time in the pay office of Bondi Junction Grace Bros (now Myer) during the latter half of her high school years.

While escorting a friend to her Year 12 formal, I met a young lady of radiant beauty with an infectious smile, genuine warmth and stunning green eyes. I was immediately won over. It’s not hard to work out to whom I’m referring.

After performing very well in her HSC, Maria chose to study a Bachelor of Social Work at Sydney University, which she commenced in 1989 ­– a memorable year as we also started dating. Maria graduated in 1992.

In 1993 Maria secured her first job as a Social Worker at Bowral Hospital in the NSW Southern Highlands. The following year (1994) she felt called to move on and secured a position, ironically, as an Oncology, Haematology and Palliative Care Social Worker in Port Macquarie (NSW mid-north coast). In November of that year we were engaged. Because of our pending marriage and the distance between us, Maria returned to Sydney to continue her career at Liverpool Hospital in areas including ICU and A&E.

We married six months later on May 13, 1995­ – six years after we started dating. After a 6-month backpacking honeymoon Maria returned to work at Liverpool Hospital, this time in Maternity (another of her passions) until we moved to the Central Coast (north of Sydney) in 1997. Because of her experience in hospital positions, and in my view being naturally gifted in her vocation, she was employed by Gosford Hospital. By the end of that year she was offered a newly created position in the Hospital’s Diabetes Team.

We spent the second half of 1998 on another European backpacking adventure. Maria returned to work for a few months before falling pregnant with Ben in April 1999. Due to severe and constant nausea and vomiting, she was unable to continue paid work.

Our dear son Benjamin was born at Gosford Hospital on January 8, 2000. He missed being a new millennium baby by a week. Ben’s birth prompted a re-think of family priorities because of my work demands. I was fortunate to secure a 3-year work secondment in Canberra. We moved in August.

Our move to Canberra would bring many more exciting changes. Maria had attended churches while growing up, but had never experienced a personal relationship with Jesus. As she was searching for God, she asked many questions of our dear friends Janelle and David who were very patient with her. Upon learning of our move to Canberra they encouraged Maria to look for an “Alpha” course. As it happened, in early 2001 God put Maria into the path of another dear friend, Jane, whose church was holding such a course. Maria signed up and I decided to go with her. She was excited that I was to accompany her, not realising that my motives as a self-professed atheist was to prevent her from being brain-washed. God had other plans. We both had our brains “washed clean” and committed our lives to Christ. This was the same year we bought our first (and current) home.

Excited by our new faith, we involved ourselves in a number of ministries, but to a great extent we did these separately. Maria fell pregnant in early 2002 and again after more ongoing nausea and vomiting, our dear daughter Gabriella was born at John James Hospital here in Canberra on October 9.

As we now felt called to remain in Canberra we realised I needed to find a permanent job otherwise we’d be returning to Sydney. God had it all under control as I was approached by a Govt department (now my current employer) and offered a position. We never imagined that this would eventually take our family overseas.

After Ben started school in 2005, we felt it was time to find a ministry we could do together that would bless others and make a difference. We were led to running “The Marriage Course”, which in many ways blessed our own marriage. We would continue the ministry until moving abroad 2yrs later.

It was in December 2006 when we learnt that we had eight months to prepare for life and work in the Holy Land.

Our move to Israel in August 2007 would transform us individually and collectively. Gabi started her schooling there. Both kids adjusted well to a new way of life. For us it was not only a time to experience life overseas from a professional and cultural perspective, but to visit a country that was so exciting and filled with so much history and places to visit that we’d only read about in the Bible. For the kids the Bible came alive as they could visualise what we read. Maria and I realised after a number of conversations that these sites around the country opened doors for discussion. Our confidence to share the “Good News” in a loving and meaningful way grew.

We were nothing short of blessed with the people that we met in Israel. We became part of an expatriate church community that was a “once in a lifetime experience”. It was a body of believers in action. We still remain in close contact with those brothers and sisters who blessed our family in countless ways. I still fondly miss them. Outside of our church community Maria also developed many other beautiful relationships, particularly with Ruthie, an Israeli photographer and poet who Maria worked with for some time.

Maria’s battle

Maria became unwell on February 21, 2009 (i.e. last year). Before this she had never suffered any serious illness – not even a stitch or a broken bone. In a short time we would find ourselves visiting specialists and having scans before Maria was admitted to Tel HaShomer Hospital on the outskirts of Tel Aviv on the night of the 24^th. An MRI conducted the next morning revealed what we would later learn to be Glioblastoma Multiforme (aka GBM), a Grade IV malignant brain tumour – the worst one to have. The cancerous tumour was bi-frontal and required immediate surgery. The neurosurgeon saved Maria’s life. Had they not operated, she would have probably died within a week or two. Praise God for this, the first of a string of miracles.

At the end of May after 3 months of concomitant chemo and radiotherapy, and our Hebrew put to the test each day, we returned to Australia. Little did we know that we were about to face many more challenges so soon.

By the end of our first week back in the country an MRI showed what appeared to be a recurrence of the mass. We were faced with the choice of more brain surgery, otherwise she’d die within what they initially thought would be a few weeks.

June 15 saw Maria undergo her second craniotomy. However, this time she was awake for four hours of the six-hour surgery. The neurosurgeon found a massive cerebral abscess and it took a huge effort to remove as much of the GBM and infection as possible, while minimising potential brain damage. We were told after the surgery that it was quite possible she would have died within two or three days had they not operated then. Another miracle.

We were also told that the surgery would give her a little more time, but she wasn’t expected to live to see Christmas. Ironically, people treated for cerebral infections can live longer as was the case for Maria.

We praised God that after two major brain surgeries Maria had only minor neurological deficits. I also thank God that Maria suddenly found a love for sport and would watch it all the time. There is a debate as to whether this was a deficit, or in my view, an enhancement.

Maria now sported a titanium plate in the front of her skull. She had five cycles of chemo, during which time we were blessed to celebrate my 40^th, Maria’s 39^th and Gabi’s 7^th birthdays. There was also a period of stability in the brain tumour, which was yet another miracle in the face of adversity.

Maria would eventually present with new symptoms that led to the discovery of a new tumour inside her spinal cord. Five weeks of radiotherapy was unsuccessful with Maria losing her mobility.

In early January we met with Maria’s oncologist. Maria bravely decided to cease any further chemotherapy as the new options had less guarantees but more side effects, her body was tired, and she wanted some quality time with us. The four of us celebrated Ben’s 10^th birthday on the Friday before Maria went into the Hospice on the following Monday for what was to be some respite. An MRI conducted on Ben’s birthday showed that the cancer in Maria’s brain and spinal cord had progressed, with even worse news that it had spread in and further down her spinal cord.

Maria had her first peaceful night’s sleep for some time. Then at 7:30am last Wednesday, January 20, after more than a week at the Hospice and an 11-month battle against such an aggressive cancer, the Lord took Maria home to be with Him. This also happened to be my dad’s 80^th birthday.

So what did Maria enjoy?

This is not listed in any particular order. Firstly, she loved to travel. Our 1990 trip to Fiji was my first overseas (she was already a seasoned traveller by then). We followed that with trips to New Zealand in 1991, New Caledonia in 1994 (where I proposed to her on a secluded beach), and two lengthy European trips (1995 & 1998). We also travelled around parts of Australia.

Maria’s dream to live and work overseas was realised in 2007. Our time in Israel also enabled us to visit Jordan, Egypt, and to introduce the kids to family in Germany and Greece. We had many more trips planned, but became impossible after her diagnosis.

What about chocolate? It’s no secret that Maria was a big fan. Such was her passion that it became part of our travel experience. I remember:

·      in 1995 we made a major detour across England to visit the Cadbury factory in Bournville (Birmingham) and bought a lot of samples, from memory the equivalent cost of at least a night’s accommodation;

·      during that same trip we spent time in Switzerland and France, visiting a couple of the countries’ best chocolatiers in the process; and

·      in 1999 we had a holiday in Tasmania at a time when Maria was finding it difficult to fall pregnant. Interestingly, some time after the mandatory visit to the Cadbury factory, while still in Tassie, Ben was conceived.

Maria loved time with us. “Quality Time” was her primary love language. She thrived when we had any time together, regardless of its duration. We have a tradition each Friday night called “family night” during which we have a relaxed meal while playing a game or watching a DVD. We will feel Maria’s absence at our future nights very deeply.

While her diagnosis was a challenge beyond words (NB. Maria refused to call it an illness), my role as full-time carer throughout this journey allowed us to share so much time and discussions that I’ll cherish forever.

Maria was so proud of, and very quick to sing the praises of her nephews Nick, Tom, Magnus, Luka, and her niece Maggie. “Mia” (her pet name) wanted you kids to know that although she loved you all so very much, her enormous love was only a drop in the ocean compared to the love that Jesus has for each of you.

Maria was also in awe of the faith, courage and undeniable obedience of persecuted Christians. She was also an active financial supporter. This is why we are taking up a collection for “Voice of the Martyrs”. They support followers of Jesus who will not compromise their faith when authorities forbid congregating and evangelising in the name of Christ. If you feel called to join Maria in her passion, please feel free to give any amount (no matter how small) in the “donations” box, located at the back of the church foyer. I know Maria would be grateful.

Maria’s own faith and time with Jesus was at the centre of her life. We often wandered how we would have coped in the face of adversity before coming to faith in Christ. The truth for Maria (and me) is that Jesus died for everyone’s sins and was resurrected to defeat death. Accepting His free gift had set us free. Because of this, I truly know Maria is in “a better place”.

What I love about Maria

Where do I start? I love Maria with every ounce of my being. Maria was a gift from God. She was my best friend, confidant, lover, sister in Christ, and mother of our children. When two people come together they become one flesh. I have a real emptiness as part of me is now missing. She was so naturally beautiful (you’ll see that in the slideshow) she rarely wore make-up. She had an infectious smile. Maria always made time for me, the kids, and anyone else she encountered and genuinely made you feel valued.

Maria was a woman full of humility, affection, purity, and integrity. She never criticised, but loved God, her family and friends with all of her heart. You could see the fruits of the Spirit working in her, i.e. love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

Maria and I called each other and our children “Agapimou”, a Greek word meaning “my love”. The term “agape” means “unconditional”, which was the type of love Maria demonstrated. I rarely recall a day in our household where Maria would have not told me at least 10 times that she loved me.

Maria had spiritual maturity beyond her years. She was of strong character and faith, which were both given the ultimate test with her diagnosis. In typical Maria fashion she saw the challenge as an opportunity to build relationships and share her faith in a loving way. Maria touched so many people (many we know, some we don’t). I believe the number of condolence messages and today’s attendance is testimony to that.

Maria was nothing short of courageous throughout this difficult journey. She always proclaimed God’s sovereignty and His love for her. It was an honour to be her partner and walk her Christian journey with her. God’s light always shone brightly through Maria. She remains my main human source of inspiration. I will miss her wise counsel.

It was an honour to have known her for more than half of our lives, and a privilege for me to care for her every day, right up until her final breath.

I loved how Maria encouraged and nurtured the kids. What you see in them today is primarily because of Maria’s love and role modelling. When confined to a wheelchair, she would make me stop her outside the kids’ bedroom doors each night so she could pray over them from a distance, and would do it with such passion. She has left behind a powerful legacy.

As I said before, Maria never asked why she had brain cancer, but rather took it in her stride. She proclaimed that God was sovereign in all situations and realised the purpose for her was to use every opportunity to witness to others. I saw her in action every day here and in Israel. She positively impacted and changed lives. Her life, albeit short, was not in vain.

Every day she would tell me that in her daily Bible readings and studies she sought to be more like Jesus. As a Christian, that in my view is the greatest challenge. Of all the people I know, Maria was the closest to attaining that goal. Her attitude and walk with Christ is summed up in 1 Corinthians 13:4-8a.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

 

…and Maria never failed us.

In the midst of all this upheaval, I have watched Ben and Gabi grow and mature amazingly. They often helped me with Maria’s care in the latter weeks of Maria’s battle. God has really been at work in their hearts.

Ben and Gabi – Mummy loved you very much and was privileged to have you both in her life. I know that she misses you both very much and loved you helping her. When you look back on your times with mummy, I pray that you will remember all the fun, how she loved listening to you, and that she would let Jesus comfort her in his loving arms when times were tough.

Baba and Mama – Words cannot express my love for Maria. Your daughter was so special, like an angel. She loved you both very much. We’ll need a lot of strength to get through each day. As we can’t do this alone, I encourage you to seek the Lord and draw from His strength.

To Effie and Brian

Effie – When Maria spoke of you, her face always lit up. She was an adoring younger sister. Thanks for being a great big sister and for all your support throughout this journey, especially over the last week. Most importantly, thanks for being a sister in Christ who can also see the eternal.

We both have learnt a lot from you and Brian, particularly role modelling your journeys as a genuine brother and sister of faith. Thanks for taking the time to mentor us.

Words don’t adequately describe the love of family and friends and the endless prayer and practical support, which carried us throughout this journey. I don’t want to single out too many people for fear of missing many more. To those both here and overseas, if I haven’t thanked you already you can be sure I will take it upon myself to do so as those opportunities arise.

However, I do have a few “thank you” messages I would like to convey:

·      The support of medical staff here and in Israel was second to none, but specifically to Maria’s GP, Oncologist and Neurosurgeon who blessed us with their genuine care and compassion.

·      To the staff of Clare Holland House Hospice who showed Maria respect, dignity and gave her the most appropriate end-of-life care.

·      Tuggeranong Baptist Church – I had never met Pastor Ian Reid or his staff prior to choosing this location. Thanks for your servant hearts.

·      St Matts Anglican Church – where we’ll have afternoon tea after this service. This is not the first time they have supported us. Thanks again!

·      Toscan-Dinn Funerals (Wally & Ian) for their care and professionalism. They made a difficult time easier for us.

·      Pastor Gary for answering my prayer and leading the services today. If Maria were here she would also voice her gratitude.

·      For all of our dear friends and family who have travelled far and wide to be here today. It’s a real blessing to our family.

·      Last but not least, to our dear friend Mel. She was with me when Maria left this world. Since then, Mel has provided amazing emotional and practical support to our extended family. I should also extend that thanks to her husband Paul who picked up responsibility for their four boys in Mel’s absence. Thanks. It means a lot.

Finally, how are we coping? The short answer is “sad and lonely.” Words cannot describe what it meant to have her in our lives. When Maria went to be with the Lord, we picked some of the pain she left behind. However, we are grateful that she is in heaven worshipping the Lord. We look forward to the time when the Lord brings us home to be reunited with her for eternity.

I would like to finish with these words from a song called “None But Jesus” by Hillsong United. It had significant Meaning for both Maria and me.

In the quiet, in the stillness

I know that You are God

In the secret of Your presence

I know there I am restored

When You call I won't refuse

Each new day again I'll choose

There is no one else for me

None but Jesus

Crucified to set me free

Now I live to bring Him praise

In the chaos, in confusion

I know You're sovereign still

In the moment of my weakness

You give me grace to do Your will

When You call, I won't delay

This my song through all my days

All my delight is in You Lord

All of my hope, all of my strength

All my delight is in You Lord

Forever more

Burial and thanksgiving service

Today was a day of mixed emotions. We had the burial first, which I had the most concerns about. Praise God that it went a really smoothly with many people in attendance. After trying to catch up with everyone present, we moved onto Tuggeranong Baptist Church for the Thanksgiving Service. In my view it was an amazing service and everyone involved both glorified our Lord as well as gave thanks for Maria.

Afterwards we went to St Matthew's Anglican Church for afternoon tea. Again it was an opportunity to see anyone I had missed.

In the evening we went to Paul and Mel's and hung out with a few families. The kids enjoyed the pool as it was quite hot until later in the evening.

Thanks to all those who prayed over this day. I experienced the peace that surpassed all understanding, especially when I had to speak.

In my next couple of entries I'm going to share what myself and the kids prepared. I will get Janelle and Effie's contributions in the near future as well to post up.

Weekend alone

Yesterday evening both sets of parents and Maria's Aunty went to apartments which Effie and I organised so we could all have a little space, especially as I pull a few things together for Wednesday.

Effie left yesterday afternoon, but returned this morning with Brian and the kids. They took Ben and Gabi for the weekend. Hopefully this time will allow me to finalise my preparations.

I will head to Cooma on Monday morning to meet with Pastor Gary for the last time before Wednesday, and to bring the kids home.

The stillness in the house is lovely to get things done, but also that quietness tends to lead to more wandering of the mind.

Ben has been very emotional about Maria and has been able to articulate it, which is such a blessing. Gabi (being younger) says that she doesn't really feel sad as she's happy Maria is not in any more pain. The three of us love and miss her so much.

Funeral notices - English and Greek

CANBERRA TIMES (23 January 2010)

O KOSMOS (22 January 2010)

Funeral arrangements

Please feel free to pass the following information onto others who knew Maria and may wish to attend.

Wednesday 27 January 2010

FUNERAL SERVICE (BURIAL)

12:00pm at Woden Cemetery, 

Justinian Street, Woden

THANKSGIVING SERVICE 

1:30pm at Tuggeranong Baptist Church, 

Jenke Circuit, Kambah

 

We’d love you to record a brief memory of Maria that touched your life.

A memory box will be available in which these may be placed.

 

AFTERNOON TEA

(Following the Thanksgiving Service)

St Matthew’s Anglican Church,

Laurens Street, Wanniassa  

For those who wish to assist on the day, a plate of goodies for the afternoon tea would be greatly appreciated. Any further enquiries should be directed to Mel on 0418 669 021. 

Forgot to mention

Sadly for Dad (because of the events of today), it is his 80th birthday. It was obviously quite subdued with no opportunity to celebrate as they drove to Canberra today.

It is Effie's birthday tomorrow. We were praying hard that Maria would not die on Effie's birthday. We thank God for His timing.

Wed 20-Jan-10 (Evening update)

As expected it has been a hard day for us all. We spent some time around Maria to say our goodbyes a number of times. We have also received many lovely emails and SMS's.

I was ready in the afternoon to leave the Hospice. The staff were second to none and treated Maria and us with such dignity and respect. When I arrived home I walked into our bedroom, which brought back a flood of memories and my emotions peaked. It was very hard and I can see this to be the case for a while to come.

The kids stayed at their good friends' place all day and returned late this evening. Both are very sad, and Ben especially is quite affected and visibly sad in my presence (in his room).

Effie and I are meeting with the funeral directors tomorrow afternoon to make the necessary plans. Our hope is that we are able to have the funeral next Wednesday (the 27th). I will post a specific entry when all is confirmed.

I am exhausted yet unable to get myself into bed for the fear of not sleeping. I know this will change with time.

For anyone intending to send flowers, we would prefer that a donation be made to one of the following bodies:

In Australia

• Cancer Council Australia
• International Brain Tumour Alliance
• Another cancer council/organisation/institute of your choice, with a focus on brain and/or spinal tumours/cancer

Overseas

• A cancer council/organisation/institute of your choice, with a focus on brain and/or spinal tumours/cancer

Your consideration is greatly appreciated.

Wed 20-Jan-10 (Maria gone to be with Jesus)

Just a quick note to let you know that Maria died peacefully this morning around 7:30am while I was holding her hand. Her parents, Aunty, Ben and Gabi have all seen her.

We are very upset, but coping. The kids are doing well for now.

Thanks for all your prayers. She had a peaceful night, which was a real answer to prayer.

Love, Troy

Tue 19-Jan-10 (Hospice day #9) EVENING UPDATE

Firstly, what I didn't get to mention was that last night some dear friends came to visit. Two of our friends sang and played music, which was a huge blessing to all those present (thanks Doug and Megan). I'm sorry I missed it.


Effie and Brian's pastor, Gary, came up today and spent some time with me, Maria, Effie and her parents. That was a lovely blessing. Gary has also agreed to host Maria's funeral service. It's very strange to talk about such things.

Maria's breathing, skin temperature and colour suggests to those here that Maria's body is shutting down. They don't know how long things will be now, but said that it could be as early as tonight but could go on for days. I made sure Ben, Gabi and I had some quality time with Maria, chatting about the good and funny times.

She slept all day and continues to be unresponsive. In the last couple of hours her breathing is more laboured and her eye are slightly open. They have been giving her more breakthroughs to relax her and help open her lungs as there is some mucus that is too deep to reach with suction.

A few friends have come throughout the day, with one dear friend Mel is staying overnight with me (thanks Paul for releasing her).

They are managing her pain very well. That is my primary concern.

Tue 19-Jan-10 (Hospice day #9) MORNING UPDATE

Effie told me earlier this morning that Maria's breathing has returned to normal for now. Praise God! A blessing in the storm.

I'm about to head in with Gabi. Ben is coming through later with Maria's parents.

Later this morning I am meeting with Effie and Brian's church pastor, who has been on my heart for some time. He has provided some fantastic pastoral care for Maria's parents and as Maria spoke so fondly of him lately it just felt right to meet with him.

Keeping Ben and Gabi in the loop

Throughout this journey Maria and I have made it a priority to keep Ben and Gabi informed as to how things were going all the time. They have been a huge blessing and have grown very much as they have travelled with us. I am prayerful that their feeling of inclusion will help them through the grieving process, especially in their later teen years and adult life. I have read and heard of people struggling in their young adult life to come to terms with being "shut out" - i.e. in their view not trusted enough to be involved.

Ben and Gabi are key members of our family and deserve no less than our full honesty. For you parents out there, you would also appreciate that children are very perceptive and if they are shut out they will draw their own conclusions, which may be unhealthy.

Mon 18-Jan-10 (Hospice day #8) EVENING UPDATE

Maria has been unresponsive and her breathing has commenced a new pattern of two breaths, followed by approx. 9 seconds of apnea. The head specialist was surprised at how quickly she has deteriorated since he last saw her on Friday. We are expecting this to continue and deteriorate further in the coming days. The specialist now thinks instead of weeks, we might be looking at days only.

As Maria is not conscious she has not taken in any food or liquid for some time. As the steroids have introduced a lot of fluid and fat deposits, she can survive like this for some time. We moisten her mouth and lips from time-to-time. The biggest challenge has been to try and identify when she is in pain. She had a number of breakthroughs through the day, so I'm hopeful we have worked it out.

Maria's anticonvulsant medication is only available in tablet form. As a substitute they have now connected a second syringe driver containing Clonazepam. While this will hopefully counter the possibility of seizures, it will sedate her even further. These are the tricky balancing acts that are discussed on a daily basis. The staff at the Hospice continue to be a huge blessing to us and treat us all with amazing respect, compassion and professionalism.

Janelle headed back to the Blue Mtns after visiting the kids at home. She has blessed us again, leaving her dear little boy behind at short notice to spend time with us.

Effie took over later in the afternoon. I left after we had a lengthy chat.

We had a few friends coming through for visits throughout the day. There will be a few additional visitors tonight while Effie is there.

It's nice to be back with the kids, but hard to be far from Maria. As I've said to so many people of late, we travelled this journey side-by-side over almost 11 months and I'd hate not to be there when the time comes.

Mon 18-Jan-10 (Hospice day #8) MORNING UPDATE

Just heard from Janelle. Maria required a breakthrough at 3:00am and is about to (just before 9am) have another as her breathing is laboured.

Thanks for your ongoing prayer for peace and reduction in pain.

Visits

For those willing to visit, please SMS me in advance. All visits will need to be short in duration.

Maria appears to be able to hear things around her, but is too sedated to be able to respond. Therefore it is important to understand that should you wish to visit Maria, you should not expect to have any interactive conversations with her. It is also a high likelihood that she will be sleeping.

Sun 17-Jan-10 (Hospice day #7)

The nurses mentioned that a brown snake had got past/over the snake/proof fencing into the court yard but went on its way when the gate was opened.

Maria required breakthrough injections @ 4:00am, 7:30am and 9:30am. This meant that she was sleeping for the entire day. Her food and fluid intake has slowed significantly.

Mark took over Janelle for a while in the morning. I arrived with the kids and Maria's cousin Nicole who arrived at our home last night. Mark took the kids out while Nicole and I hung out with a sleeping Maria.

The doctor on duty for the weekend came in to check on Maria during the morning. As earlier suggested, it is quite definite now that Maria will remain in the Hospice. Because of the breakthroughs they will increase the dose of morphine, which will lead to further long periods of sedation. The aim now is to keep her comfortable.

Nicole headed off earlier in the afternoon with Mark and his family leaving later. Janelle took the kids out for a play at the park while I stayed with Maria.

I took the kids for 3 games of ten-pin bowling, which was a marathon, finishing around 9pm. The kids have now crashed out.

It was difficult in a way to have Maria so "out of it" that for the one or two brief moments she opened her eyes, she looked straight through/past me into space.

A little while ago Janelle SMS'd to say that Maria needed another breakthrough and is now sleeping comfortably.

Sat 16-Jan-10 (Hospice day #6)

Due to the number of 'breakthroughs' given, it was decided to hook Maria up to a syringe driver for her morphine as well as some of the medications they were able to administer in liquid form. She slept on and off throughout the day, requiring a breakthrough injection around 7:30pm.

Mum and Dad headed back to the Central Coast after their few day stay, helping out with the kids. Mark, Cass and the kids arrived back in town for the weekend, and Janelle came to do the night shift.

One of Maria's childhood friends, Georgia, and her mum came to visit from Sydney. That was nice for Maria as she has since been heavily sedated most of the time since then.

Fri 15-Jan-10 (Hospice day #5)

Maria woke around 10:30pm last night in an agitated state surrounding the need to urinate. After explaining on a number of occasions that she had a catheter in (her short-term memory is virtually non-existent), something didn't seem right. The nurses found a problem which they apparently rectified before the end of their shift.

About 3:45am Maria woke in the same agitated state with the need to urinate but unable to. The nurses removed part of the catheter that was blocked and fixed the issue. By the time this had been done and we had re-positioned her it was 4:30am. Unfortunately Gabi woke and was ready for breakfast and a play. She eventually settled.

In the morning my parents came and took Gabi out for breakfast. During our discussion about the location of nice cafes, Maria said she'd like to come along and would get herself ready. I explained that we were waiting on the nurses and doctor and were unable to go.

Maria's parents arrived around the same time to allow me to shower and go to buy some breakfast. I used Maria's ensuite and when I came out about 10mins later, Maria saw me and was excited that (in her mind) I had just arrived to visit her.

Because of the number of 'breakthroughs' (i.e. pain relief between her normal doses) needed, they decided to administer her pain relief and a number of her medications in liquid form through a pump driver. The ongoing administration of morphine will hopefully minimise/eliminate her pain and agitation.

A dear friend came through to spend some time chatting with me (thanks Mel - especially for the coffee lunch). During her visit a guy came around with an Alpaca named Andronicus. Maria was asleep at the time. The owner said that the Alpaca is quite timid and won't come close to people's faces. The next thing we know, Andronicus comes up close to Maria and kisses her, which woke her. The guy could not believe it! He said that he has never seen the Alpaca do this in its life (4 y/o). Maria woke suddenly and scared, but as we talked it through she was happy to have something so cute visit. Poor Maria – she is already confused so can you imagine how she felt to wake in a Hospice bed face-to-face with what would have looked like a creature?!

The guy gave me his details and offered for me and the kids to visit any time for fun and to take them for a walk.

I came home to the kids and both sets of parents. We had dinner together, during which time Ben went off to his room very tired. I told him to put on his pyjamas and read a book. When I came into his room a short time later, he had his Star Wars book open on the bed and he had flaked out. Even moving him around did not arouse him. His sleepover and swim today did the trick.

I plan to take Gabi swimming first thing in the morning, after which I'll head into the Hospice to take over Brian as Maria's GP will visit (social call) and a friend she grew up with in Sydney. Janelle will take over in the evening.

Thu 14-Jan-10 (Hospice day # 4, chat wih Oncologist)

Effie reported this morning that Maria had one small vomit and disturbance during the night.

I took the kids to see The Princess and the Frog. Mum joined us as well. Afterwards I took the kids home so I could head in to take over Effie and Ben could be ready to be collected for his birthday sleepover.

Maria pretty much slept through the day into early evening, with small glimpses of wakefulness. One of our dear friends who we grew up with, Claudine, visited from Sydney with her three children. It was lovely to see her as we last saw them before we headed to Israel. My brother Mark and his family headed off back to Sydney in the afternoon and planned to be back over the weekend. With two small boys, it is a huge effort from our perspective. Mum and Dad have decided to stay on for a couple more days.

We also had our dear next door neighbours appear briefly before they head off on a long holiday. It was a blessing that Maria was awake at the time they arrived and there are now little guarantee that she will be conscious during the day (cancer progression).

Just before bed Maria woke in pain (this is a common occurrence as she sleeps for long periods without pain relief) and was very panicky about going to the toilet. On a number of occasions I explained that a catheter was in place. It turned out after I got the nurses involved that there was an issue which couldn't be seen on the surface. They were able to remove quite a bit of fluid. All is fixed and we'll be monitoring during the night.

Gabi came in this evening with Maria's parents. Gabi has stayed on and she is sleeping with me on the double sofa. She not long fell asleep so I was able to sneak out and type this entry.

I spoke with Maria's oncologist who had a chance to review the MRI after having been away. He said that there is clear enhancement of the spinal tumour in both directions as well as at least 10 new nodules lower in the spine. There is also enhancement in the brain with two new nodules in the cerebellum, which accounts for her lack of any type of balance now, fear emotion and troubles with her speech and swallowing. He had spoken with the Hospice doctor and both agreed that more than likely Maria will not leave the Hospice.

Because of her swallowing problems, I have taken the active step of speaking with the doctor and removing some of her non-essential medication. We have also introduced some of her meds in liquid form.

As touched on above, there are a number of disease progession signs that we are witnessing, such as the: increased sleep; nausea; vomiting; headaches and other acute pain; confusion; anxiety; speech and motor control; decreased appetite (the Hospice food may play a part in that one).

As Maria is very selective as to who is around her for any length of time, our brother-in-law Brian will come and stay over tomorrow night with our dear friend Janelle travelling down from the Blue Mountains to do the weekend night shifts. Although I am happy with the break and having time with the kids, I am not totally comfortable being away from Maria for any long period of time.

More missed sleep

It is 5.:30am on Thursday and I am on the floor of Gabi's room typing this entry.

I was hoping that this would be my opportunity to grab some decent sleep. Firstly, I struggled in Maria's hospital bed with the special air mattress making all sorts of noises when I tossed and turned.

To add to this, Ben came in just before 4:30am after having experienced a major episode of diarrhoea, the likes I have not witnessed for some years. It only took me a few minutes to clean him up, console him and tuck him into Maria's hospital bed. The following 30 minutes was spent trying to clean his bedroom.  

With Maria's parents now staying with us indefinitely, it's back on the floor for me.

Wed 13-Jan-10 (p.m.) update

Following on from the morning update, Maria slept for another 40mins then woke up nauseas and vomited. After a wash she fell back into a deep sleep, which continued throughout the day.

The doctor I spoke with also confirmed other medical advice that the increased sleep and vomiting is a result primarily from the cancer. Some of the morphine etc. will also play a role. She doesn't think things are imminent, but it depends heavily on how rapid the progression is. I have been provided with consistent advice as what to expect at this and the next stage.

My parents, brother and family came and got to see Maria during a brief wake period. Effie came around 4:30pm to take over the reigns so I could collect the kids from their 24+ hour stay (thanks Gill) and spend some time with them.

Effie said a little while ago that Maria woke around 7:30pm and vomited again. After a wash and some morphine she went back off to sleep.

Although we have the nausea to deal with, her lengthy sleep and less need for pain relief today has been an answer to prayer.

Tomorrow morning I'll take the kids to a movie before heading to the Hospice. I'll be doing another overnighter. Ben will be having a sleepover at his best mate's place (for his mate's birthday) and Gabi may stay with me as she's keen to "...sleep in mummy's room".

Hospice details

I've received a number of requests for the details of the Hospice. I thought I'd blog the specifics to minimise the enquiries:

Maria Parakilas

c/- Clare Holland House (Room 5)
5 Menindee Drive
Barton ACT 2600
AUSTRALIA

Wed 13-Jan-10 (a.m.) - overnight update

Maria fell asleep just after 9:30pm and didn't wake until just before 5:30 this morning. It's been a long time since she's had nearly 8 hours of straight sleep. After watching the sun rise together from her room window, I read to her from the Bible (2 Samuel). About 6:20am she fell back into a sleep, so I'vve ducked out to prepare this brief update.

Tue 12-Jan-10 (Tough times)

Maria told me this morning that she had been awake all night calling out and people walked past her and gave her no attention. I checked with the nurses and the notes and she actually slept right through till about 6:45am after being given more appropriate pain and sleeping medication.

We got Maria outside in her bed so she could experience more of where she is before it got too hot. I took some photos, but as I’m sending this message via my phone because I’m staying here overnight, I’ll do that another time.

I spoke with the oncologist late yesterday and he said that he was unable to view the MRI, but read the Radiologist’s report. He is out of town today and tomorrow, so on Thursday he will sit with the Radiologist and review them. In summary:

Brain tumour – It has grown, but not too significantly as yet.

Spinal tumour – The lesion that was irradiated is now more than 40% larger. To add to this, it appears to have enhanced up the spinal cord to the brain stem.

Furthermore, there appears to be further spots down inside the cord, also down the outside (called leptomeningeal metastasis).

While the Oncologist cannot specify how much time Maria has left, it could be days or in a best-case scenario only weeks.

The nurses had a lot of trouble showering her today as she has lost all balance. Both legs are now virtually immobile. She is in some pain and is finding nights difficult. I am making plans to have someone with her 24/7, with me taking up a significant portion of that load by choice.

We can see that she is deteriorating rapidly. There is a high likelihood that she won’t come out of the Hospice.

This afternoon Maria said that she was sick and tired of it all as she has to be moved, fed, showered and toileted (which I’ve been more than happy to do over recent days, as have the staff here), and wanted to cease treatment including her medication. I have found moments like that emotionally challenging because I see and feel her pain. The nurses and I were able to convince her that the meds she takes helps prevent pain, swelling and seizures so they are necessary. I even joked that I have enduring power of attorney and may action it if necessary. As she wants maximum comfort and pain relief she was happy to continue. They have managed her pain quite well to date.

Both Maria and my families arrived in Canberra this evening. Maria’s parents came past the Hospice to collect a key from me, so they got to spend a little time with Maria before she dozed off. It is a very emotional time for us all.

I started to coordinate brief visits for those nearby or in a position to travel to Canberra. Maria was initially keen on this but had a change of heart after a rough afternoon. We’ll see how this goes over the coming days.

I appreciate the ongoing prayer support for us all, especially for Maria to experience minimal/no pain.

Prayer request

Maria is starting to experience more pain in her head and back and has had some vomiting of late. I'd be really grateful for prayers to ease these symptoms as we move into what is now an even more challenging part of this journey.

Mon 11-Jan-10 (Maria enters Hospice)

We received confirmation this morning that a bed was available for Maria at the Hospice after a busy weekend, where they had to deal with a few emergency admissions. A patient transfer ambulance had been arranged as well, which was a huge blessing to us. One of the two ambulance officers that came had brought Maria home after her last admission. They were both very nice and helpful.

Maria was quite excited about her stay. Because she doesn't want to be left alone, I have been sleeping on the floor next to her over the last week or so. When it was finally time to get up after a rough night, my back had sort of seized up and it took some time to get into motion and off the floor. After a really difficult weekend and an increasing painful back and abdomen/groin, I too am looking forward to the break from the labour-side of things.

The Hospice itself is a beautiful and tranquil place on the lake with all rooms having water views. There are 19 rooms and it looks as though Maria is the youngest resident by a long-shot.

The staff are lovely and Maria's room is quite large. We were all warned about brown snakes (for our overseas readers, they are deadly) that get about so to be cautious when outside. The kids and I went for a short walk as it was very hot at 38 C (100 F). We saw a couple of swans with a very young signet. They came right up to us, expecting to be fed. It will be nice to get out and perhaps do a little casual fishing later in the week if it cools. There is also a kids playground and family room. Should Maria and I need time together, there are volunteers who can keep the kids company.

It looks like Maria has another urinary tract infection, which they were investigating to hopefully treat ASAP.

Upon leaving, Maria looked exhausted and a little down. I arranged with a dear friend to leave the kids so I could go back in for a couple of hours in the evening to see Maria again. Anneke also kindly fed the three of us.

Maria was asleep when I arrived. She woke a little later and we had a lengthy discussion about some important housekeeping issues. She was curious where Ben and Gabi were. She could not recall the three of us spending 4+ hours with her earlier in the day. She is failing to even recollect events that took place only minutes before. It's hard to see you loved one confused and with such memory loss.

On the way home Ben asked, "Dad, what will we do with mummy's things when you know what?" Gabi replied, "Mummy said that when she dies I can keep all of her jewellery." I found that pretty hard to respond to. They both encouraged me to cry. They have matured so much through this experience and are such blessings to have around.

We arrived home just before 10pm and it was still 29 C. Hopefully the usual Canberra conditions will kick in and the evening will cool.

I am looking forward to sleeping in a bed and getting a few hours of straight sleep tonight. But I will miss Maria's calls out to me at all hours.