Fri 8-Jan-10 (Ben's birthday, long day at hospital, funeral)

After Maria woke around 2am and spent a couple of hours up and about, we were up again around 6:30am to wish Ben a happy birthday and get ready for Maria's MRI as we had to check in at 8am. We enjoyed Vivienne's birthday cake and some extra things Maria prepared during her early morning 'wake'.

We arrived at the hospital for her MRI. I had to assist the staff to transfer Maria to another wheelchair and onto the machine. They were great, seeking my way of doing things as they have learnt that the carers generally have things down-pat.

I took the kids to the cafe while we waited. Unfortunately it was a very long session in the machine and Maria was suffering terribly from head pain, although I had given her strong pain killers before she started. She was exhausted and feeling a little agitated (wouldn't anyone?). We were told not to leave as the Neurosurgical or Oncology teams would need to come and see us. This unsettled me a little. To cut a long story short, one of the Oncology registrars visited us (our Oncologist doesn't work on Fridays) and she said that the radiologist was concerned and wanted to see whether Maria wanted to be admitted and whether she had any symptom changes of late. When I enquired as to what they had discovered she said they were still reviewing the imagery. Thankfully she had spoken with our Oncologist who told her that we were "very sensible" and that she should be guided by us. We didn't see any need to put her into hospital, especially as it was all so vague and she is going to the hospice on Monday. I collected a copy of the imagery and have since viewed it at home. Again, I'm no expert so it would be remiss of me to make any comment. I SMS'd the Oncologist and asked him to review the imagery on Monday so we could discuss.

Maria was exhausted by the time we got to the car, leaving four-and-a-half hours after arriving. What a way for Ben to spend half of his day! I struggled to get Maria into the car as her fatigue meant she was a 100% dead-weight. Holding her up for two minutes while trying to manoeuvre her into the car hurt my back and may have aggravated my spinal problem as I've had pins and needles in my right arm since.

Because of the length of time we had at the hospital and Maria's condition, she couldn't make the funeral, although she was really keen to go. This meant I had to scramble at short-notice to find someone to be at home. Our dear friends' son (also Ben) came down and hung around in the event Maria needed help. That was a huge blessing. When we came home I put Maria to bed and gave her a sleeping tablet to make Ben's job easier during my absence. 

I headed off to the funeral, only for my GPS to freeze on numerous occasions, or not be able to acquire satellites. I just upgraded the maps, so I'm wondering whether something happened then. I got there around ten minutes late. It was a lovely service, celebrating Alan's life. He was such an interesting man.

Maria slept over three hours, which she needed. When she woke I had a bit of transferring to do. It can be stressful and overwhelming at times. I am using the lifter more often (albeit slower) to keep me intact.   I even gave the kids a ride each before bed. As you can see, the harness is huge on them.

Maria was tired again quite early. She has now been asleep for a couple of hours. I might hit the sack myself as there is a good chance she'll be up in a while.

Thu 7-Jan-10 (Early birthday celebration for Ben)

Maria woke at 3am hungry and wanting to watch some comedy. We both went back to bed around 5am. She insists that someone is with her all the time as she has a fear that she cannot articulate, so I slept on the floor by her bed.

Two ladies came at 8:15am to shower her. We knew one of them as she has cleaned our home in the past. They did a great job. Maria felt a lot better afterwards.

Tomorrow is Ben's birthday. However, as we will spend 2+ hours at the hospital in the morning for Maria's MRI and attend a funeral in the afternoon, we thought we'd dedicate this day to him. He is so excited to be turning "double digits". He certainly has matured a lot in recent times and is acting well beyond his age, which is a lovely change for us.

We asked Ben what he'd like to do and what food he would like. He chose to go to the park by the lake for a picnic and to have salad sandwiches. We timed it so well arriving mid-morning as the temperature had not gotten too hot and there was a free picnic table in the shade. Ben opened his presents and spent time constructing them while Gabi and I played cricket. She loves the sport and has a handy bowling action to boot.

Afterwards we headed to the nearby shopping mall where we had a snack and lunch. We bumped into a couple of friends as well.

Maria was exhausted and becoming agitated so we headed home. It is currently 33 degrees (91.4 F) and fortunately the cooling is working. I put Maria to bed a short time ago (3pm) and am typing this entry by her bed as (previously mentioned) she requires me to be with her. Her right leg continues to remain very swollen and painful to touch, so each transfer or move can be a challenge. Her left leg has weakened more and she is becoming more of a dead weight to lift and move.

Our dear friend Vivienne made a birthday cake for Ben, which is such a blessing. We'll either enjoy it tonight or leave it for tomorrow.

Wed 6-Jan-10 (Another busy day, planned MRI, Hospice stay brought forward)

I forgot to mention that yesterday we reduced Maria's dexamethasone (steroids) from 16mg down to 12mg. She is going okay with a little more head pain. I'm keeping an eye on this.

Maria woke this morning in a panic as the catheter was not working. We called a nurse who came out and did an early morning visit. We were able to rectify the problem and shower her. 

Effie came for her day with us, and again did so much work around the house, which has been a mega blessing.

Maria's dad was here all day putting in ramps and preparing to put a waste in the bathroom where Maria will be showered from now on. A lot of work and another mega blessing. Thanks to Mike also, who prepared the ramps with 'Baba'.

The kids went out with dear friends for Ten-Pin bowling and lunch. That too was a huge blessing.  

A massage therapist arranged by the Hospice visited and massaged her for an hour. I had the OT come in the afternoon to teach me how to use the hoist. Effie was the guinea-pig. No injuries to report. 

The Oncologist made an urgent request for a full brain and spine MRI for Maria. I followed up today and it has been organised for Friday morning. Poor Ben, we've had to explain to him that his birthday will involve a 2hr hospital visit in the morning and a funeral in the afternoon. We are going to try and do something tomorrow instead.

Because of bed availability and the school holiday period (it is very difficult to devote time to the kids while caring for Maria), they have brought Maria's stay at the Hospice forward to this coming Monday. Maria is looking forward to it as are we all, as we've heard a lot of great things about the place. Maria will probably stay for only one of the two weeks booked.

Maria has been sleeping for the last hour-and-a-half. I'm praying things get better with her sleep, although expectations are not high.

I'd better go and check on Maria.

Tue 5-Jan-10 (another busy day, a minor fall)

Maria slept for about an hour before waking around 9:30pm. She then stayed up watching TV until 3:30am with me on the lounge next to her, dozing in/out of sleep. After getting her to bed, she only slept until 7:00am. Given the last couple of weeks of these types of sleep patterns and the busyness of the days, I have struggled with fatigue more often than hoped.


The kids went off with Brian and their cousins for a day of fun in kayaks and swimming, but not before Brian helped me to dismantle Maria's bed in preparation for the delivery of a hospital bed and lifter.

One of the Home Based Palliative Care (HBPC) nurses came and we discussed a catheter for Maria. A nurse from the community arrived just in time to assist. Maria was so excited to have the catheter inserted, making the nurses laugh. I too was very happy as it means 6-10 less transfers a day that will minimise wear and tear to my back, neck and shoulders.

The HBPC nurse invited Maria to spend a couple of weeks at the Hospice. Maria was very happy to do so. She said she'd call later in the day to advise a date and to arrange for their volunteers to contact me for in-home respite care (later confirmed the stay at the Hospice will be from 8-Feb).

The nurses' visit was followed by one from the hospital's equipment loan staff to install the hospital bed and lifter, as well as provide some other items.

No time to rest as the community cancer social worker and another person came to discuss other assistance that can be provided, such as showering.

This was followed by a visit from a doctor from the Hospice. She was here for a couple of hours getting all the background from me before seeing Maria.

Maria sat on the recliner after dinner. She became quite tired and wanted to go to bed. As I was transferring her to the wheelchair she missed the chair and ended up (softly) on the ground. After an unsuccessful phone call to one friend, the kids went across the road to neighbours for help. It didn't take much with two of us involved to get Maria sorted (thanks Lee).

The hospital bed has a special air mattress that sounds like Darth Vader breathing when you press heavily on it. It is extremely comfortable and will help Maria in many ways including reducing the risk of bed sores. The machine that keeps the mattress inflated has a low hum to it. Shouldn't be an issue, especially as Maria sleeps with ear plugs.

Here's praying for a better as the catheter should remove the stress of her waking in a panic and then having to urgently call me to get her to the toilet.

Mon 4-Jan-10 (exhausting and emotional day)

The day started with Maria's parents and Aunty arriving just before we had to leave to visit the Oncologist. We were blessed to see him not long after our arrival. As the primary line of treatment is not acting as effectively as hoped, he laid out a number of alternative options involving mixing different chemotherapy drugs. The side effects in each case would be significantly greater than what Maria has experienced. The final/last resort option is called Bevacizumab (trade name "Avastin"), which I have been following closely over the past six months. It is an anti-angiogenesis drug (i.e. it stops the formation of new blood vessels which feeds tumour growth) which has been controversial and had mixed results. In addition to some of the significant side effects, it costs $2,000 a week. If we had some guarantees that it would be effective and not affect Maria's quality of life, then we'd consider it, regardless of the cost.

Maria is tired of all the treatments and wants to enjoy her remaining time with us. She therefore decided to cease any further treatment. She will continue her medications for now, but will not pursue any other therapies. While from a personal and selfish perspective it is difficult contemplating the result of this decision, I completely respect and support Maria's carefully considered position.

When we returned from the Oncologist, I popped over to our neighbours to see Elaine and find out how Alan was, as he had entered the Hospice on Friday afternoon. I arrived to learn the sad news that Alan died peacefully in his sleep last night. It was a blessing to hear about the family's experience, witness their strength and coping mechanisms. In the middle of all of their busyness, Elaine blessed Maria by coming over to share the news and chat as Maria was unable to get across there. Alan and Elaine were the first neighbours to welcome us into the area and made us part of their street-party crowd, albeit we live in an adjoining cul-de-sac. Alan was a former Airforce officer, so it looks as though he'll receive a military funeral. We continue to pray for peace and strength for Elaine, her children and their families.

I was hoping for a quiet day, but it turned out to be the most challenging for me, coming off little sleep from last night. As it was the first day that people were returning to work after the Christmas/NY break, I received a lot of calls and ended up having quite a few visits. Fortunately Maria was able to sleep through some of them. In short:
* I am liaising with "Carers ACT" for some future respite assistance so I can dedicate some time to the kids.
* The OT spent about two hours with me going through additional equipment requirements.
* A hospice social worker visited the kids. They got on well and she was impressed with how they are managing.
* The community physio came for a visit.

The kids have been an amazing blessing, willing to help most of the time. They are assisting me to dress Maria and help with other tasks. Ben helps me to lift the wheelchair on occasions.

Tomorrow will also be busy with: a Palliative Care nurse visit; me having to dismantle our bed and rearrange the room in anticipation of an afternoon delivery of a hospital bed, hoist and other equipment; visit from the community oncology social worker and an organisation known as "Community Options" to assess the need for some assistance in showering Maria.

The kids will be out with our brother-in-law Brian and his kids as they visit Canberra for a swim and possibly canoeing in the lake.

Fri 1-Jan-10 (New Year starts in hospital)

Happy New Year to everyone. May your year be a healthy and safe one.

Maria was very agitated last night, which got to the point of me having to call one of the Palliative Care nurses for advice. Her advice worked and Maria slept for just over 6 hours.

Maria woke just before 4:30am. When I entered the room she complained of some pain in the front and back of her right knee. After I moved her to the rumpus room and put her in the recliner, her pain seemed to increase. Significant pain medication had no effect. Considering I had been told that Maria is at risk of Deep Vein Thrombosis (DVT) and symptoms may include pain behind her knees, I decided to call the ambulance. They arrived less than 20mins later. The two paramedics were very nice. They were finally able to canulate Maria after a few attempts because of her ongoing vein problems. The morphine they administered seemed to help.

One of our dear neighbours/friends was up and saw the ambulance so she came over and was able to stay and wait for the kids to wake, which was a huge blessing to us (thanks Carol). Another dear friend was able to take the kids and have them for a full-day play date (thanks Viv).

We had to wait for Maria to have an ultrasound as it was a public holiday and they were on call. To cut a long story short there was no sign of a clot. We were also blessed to be looked after in part by a friend who is a senior doctor in the Emergency Dept.

We had the choice of keeping Maria in hospital over the weekend and into early next week to allow us to have some more equipment installed at home. Maria wanted to go home and I was in agreement. An ambulance took Maria home from the hospital after a nine hour stay. Since then we had a palliative care nurse visit.

Not the ideal way to bring in the new year.

Wed 30-Dec-09 (Effie's visit, some time out, another fall)

Effie arrived in the morning as did my parents to take Ben and Gabi bowling. Maria decided she had been in the house for too long, not having been out since we returned from Cooma on the 26th. The three of us went to a cafe called the "Pork Barrel", which is almost directly opposite Old Parliament House. We sat under beautiful large trees that just seemed to take the edge off the warming day.

After the cafe Maria needed to go to the toilet. We headed to Old Parliament House and just before we got there the wheelchair footstep hit part of a curved gutter and Maria went flying. I felt terrible. Effie was still back at the cafe organising a "doggy bag".  Just as Effie arrived some passersby were to our aid. They helped me lift Maria back into the chair while another went to get security to assist us. She had a small graze on one of her knees, but no other visible injuries.

For my "time out" I did our major shop and spent time at the pharmacy collecting medications and other items for Maria.

I had to pause for a while as Maria was experiencing some delirium. We are now settled in front of the TV. I think it's going to be another long night for us both.

Tue 29-Dec-09 (the last update for a while)

I have not written for a while and may not be in a position to do so for a while yet, unless I have the energy and the opportunity arises. Here is a summary of things so you are aware of why this is the case:

• Maria is now wheelchair bound and I am with her virtually 24/7. I now lift her (many times a day) in/out of bed, on/off wheelchair/commode, etc. While it may help my strength and conditioning, it is exhausting.
  
• Maria is sleeping less at night and day. In fact last night she did not sleep a minute. The reason for her sleep issues is the struggle (only in the last three days) with acute agitation.
• Maria is also experiencing increased confusion and short-term memory loss, as well as some slight dysphasia (language issues, such as forgetting or using words out of context). The time we spend together ever increases.
• She has had a number of falls since Christmas. I'm a bit too emotional to describe the events. On two occasions I had help on hand (thanks Max, Mark & Cass). Fortunately she has not been seriously injured, but her confidence it at its lowest and frustration at her peak. 

The children came in this evening to find me crying. We then spoke openly with them (once again) about how things are progressing and what they are to expect. It was a highly emotional time for us all. Maria is still unable to shed tears - surgery related.

Maria is not keen to really see anyone at present. Her sister Effie will come up for the day tomorrow to give me a chance to do shopping, visit the hospital and make some calls. My parents and brother (and his family) have also helped us a lot over the last few days. Dad/Mum will take the kids out for a few hours.

Before closing I also wanted to thank the many who have sent us emails and cards since just before Christmas. I have intended to respond, but (as I know you'll appreciate) just haven't been able to. I've already spent too long on the computer this evening and my eyes are feeling red-raw. Time to sign off until the next entry on ???

Happy Christmas

We want to take this opportunity to wish you all a safe,

peaceful, healthy and blessed Christmas.

Remember that Jesus is the real reason for the season.

Wed 23-Dec-09 (Another fall, RT 25/25)

The challenges continue...

This morning I left early with the kids to head to the other side of Canberra to drop something off to someone. On the way back Maria called and told me she was awake. As we arrived home, the kids went ahead of me. The next thing I know they both come running to me saying, "Mummy has fallen and she's on the ground". I moved with considerable pace to find Maria sitting on the kitchen floor, next to the fridge. She was sore and shaken. Her version of events is as follows. After speaking with me she decided to go to the kitchen using her walking stick (instead of the wheelchair). She started to make a hot chocolate and left her walking stick to go to the fridge. The next thing she knew she felt herself falling and couldn't stop. She landed on her face and knees. She felt considerable pain and waited until she heard the kids enter. She recalls with humour that at first Gabi came into the kitchen, looked at her and ran out screaming for me. Ben followed a few seconds later and did exactly the same thing. She was worried that no-one would come for her. I lifted her up into her wheelchair then we iced her right cheekbone. She otherwise seemed okay, except for her loss of confidence.

I took her to the bathroom for a shower. She decided that she needed to go to the toilet and could manage herself. As she left go of me, she fell backwards, fortunately straight onto the toilet seat. This was a further confidence blow for her.

A dear friend popped through during the morning to deliver some Christmas goodies. Thanks Mary.

We left the kids and headed in for Maria's final radiotherapy session. She has developed an amazing rapport with the staff, who have encouraged her to drop in anytime.

They also took her blood, which again was quite an adventure. Maria sits there expressionless, even when it is painful. She is quite the veteran. She was seen by the Registrar and we will see the specialist in four weeks time. Hopefully an MRI will be arranged for around that time.

We celebrated when we got home as it is so freeing to not have the daily rigmarole of travel, especially as Maria's mobility has declined so much in recent times.

Our dear friends Paul and Mel came over during the afternoon to install some more handrails and help me to rearrange Maria's room to make it user friendly for her condition. They have blessed us endlessly.

We also spent time wrapping presents on my bed, which we later finished in the kitchen.

In the early evening some other dear friends came for a visit and showered us with gifts. That too was a lovely blessing. Thanks Michael, Viv and kids.

Ben and Gabi have been great helpers and are so much more aware of Maria's state. We all speak more openly about it pretty much every day as a question arises.

It is amazing how quickly Maria's condition has deteriorated. I am now her round-the-clock companion. Until now, there were periods that she could be left alone, but that is no longer the case. I help her shower and when she goes to the toilet. She is spending pretty much all of her time seated/laying. We pray that God continues to strengthen us as the challenges compound.

I'm off to bed as it's nearly midnight in what has been an exhausting day. I also need the energy as we have our family visiting tomorrow, which we're looking forward to.

Tue 22-Dec-09 (pastoral care visit, RT 24/25)

Firstly, I forgot to mention in yesterday's entry that our dear friend Paul came and installed hand rails and a new shower set for Maria. He has been such a blessing to us since our return.

This morning we had a visit from one of the pastoral care workers at Clare Holland House (Hospice). She was lovely.

Maria's parents made the long drive to give us some meals. They were able to look after the kids while we went to RT. Maria is very excited that she has only one remaining treatment tomorrow as she is very much over it. We were able to give out chocolates to the staff as well as for Maria's Radiation Oncologist and her regular Oncologist.

Maria's parents had dinner with us (we ate two of the three meals they delivered) before they made their long trek home. It was such a blessing to have them make the long drive just to drop off some food (and to see Maria as well, of course).

Mon 21-Dec-09 (Visit, RT 23/25)

The Oncology Social Worker from Community Health who has visited us on a few occasions came over this morning. This coincided with the arrival of our dear friend Janelle and her son Dom. As we had to complete an 'Enduring Power of Attorney' it was helpful to have Janelle there to be a witness. As this legal document allows me to manage Maria's financial, health and personal care matters in the event she is unable to make those decisions herself, I'm hoping it won't be required for a long time.

Janelle and Dom stayed for the day and left this evening. They even came along with us to RT. Maria now only has two sessions remaining and is keen to finish. We took her wheely-walker so we had the extra space in the car, but realised that she is now beyond that. We improvised by sitting her on the walker's seat while I pushed her into RT. The nurses gave us a wheelchair that we were able to use right up until we drove off.

Maria remains exhausted and her right leg is quite problematic with it being non-functional, quite swollen (as is her other leg, which she can't feel) and very sore when I try to move it (e.g. in/out of car, on/off bed, on/off wheelchair foot step, helping dress). We are also using the wheelchair more around the house as well, so it looks like this is the new status quo (as it changes from day-to-day) until there is a positive change.

Sun 20-Dec-09 (Family day)

Maria had her second reasonable night's sleep in a row, which has been a real blessing. She has started using a new sleeping tablet, but we had to cut down to half a tablet last night as the first night was very interesting for both of us with me having to virtually carry her to the toilet on a couple of occasions as she was in a 'drunken' state.

We spent four-and-a-half hours in the city today to have quality family time. We bumped into Maria's Neurosurgeon and his children. It was nice to have a chat with him as we didn't see him at last Friday's appointment.

We did a lot of walking around the main shopping centre, so fortunately we had Maria in her wheelchair.

We were able to take the shopping opportunity to have the kids choose their beautiful "memory boxes", which was also very special.

We even had a family shot with 'Santa' as a special momento for this Christmas. I'll save that photo for our Christmas entry.

It was a lazy-ish afternoon, spending time together. It was touching to see Maria help the kids start to fill their 'boxes'.

Sat 19-Dec-09 (water fights, party)

Maria decided that she would cook breakfast, making French toast. 

We then took a group of funny photos of us before the kids challenged me to a water fight, which I accepted. It was quite a battle.  We had a lot of fun.

In the afternoon we had a party (Gabi's classmate) to attend out at a property about 30-40mins from our place. I woke Maria from her sleep, but she wasn't up to it. I dropped Ben off to his mate's on the way out, so it was just Gabi and me. We had a lovely time. Gabi enjoyed seeing a mob of kangaroos.

It was another late night for the kids, but that was okay as we planned a special family day tomorrow.

Fri 18-Dec-09 (bad night, RT 22/25, doctor's appointment)

Following on from my previous entry, it was about 12:15am and I was heading to bed when Maria woke. We spent some time chatting before I needed to sleep. She went back to bed around 2am and woke a little while later.

The kids were collected in the morning by a dear friend, which allowed us to head in to meet with the Neurosurgeon. We discovered that he has been off work for some time due to a personal/family emergency. We hope all is okay.

While waiting in the Outpatients Clinic, we saw a young girl and her mum who we met in the hospital at the time of Maria's surgery in June. This young girl had a very interesting spinal issue, which our Neurosurgeon was able to successfully operate on. It was great to see her walking again and have a chat, during which we realised it was over 6 months ago!

We saw the Registrar, who was involved in Maria's surgery. He was very nice, informative and honest with us, as everyone has been. The brain tumour is about the same size as the previous scan (September) apart from some additional swelling. However, their main concern is from a biological perspective. That is, as it has dropped into the spinal cord it is resisting the first and primary line of treatment (i.e. chemo).

Maria was really struggling to get around on her walker. She has resisted the wheelchair for now. We had some lunch before RT. I am now assisting Maria to dress at RT as well as home because of her inactive leg.

When we got home Maria had a long sleep. Mel brought the kids back and spent some time helping me sort some of the kitchen out. That was a huge blessing. She also went to Bunnings and selected the equipment to be installed in the ensuite shower recess and back entrance.

We had a doctor's appointment for Maria late afternoon. We took Ben along as he complained of headaches and a sore tummy. He seems okay. Normally we wouldn't worry so much but with the weekend it is always difficult to find a doctor.

We had a late and lazy evening, with plans for a fun and lazy day tomorrow.

Thu 17-Dec-09 (FULL DAY - medical appts, RT 21/25, party)

Maria had another dreadful night. Unfortunately I needed to get her up before 9am as we had someone from Home Help visiting to discuss their services and how we could best use them. After that we had a Palliative Care nurse visit from Clare Holland House (Hospice) to also discuss their services and lock in regular home visits.

By the time the above visits were over, Maria had a brief nap before we headed off to RT. Today it was 37 degrees and unfortunately ideal conditions for bush fires with no humidity yet strong and hot gusting winds.

Tom got to come into the RT room to see where Maria receives her treatment. They even rotated the machine for the kids.

Afterwards, Maria had to have blood taken to check how she's coping with the daily chemo (so far no problems). As we didn't have time to go around to the other side of the hospital and visit pathology, we had the RT nurses take the blood. Unfortunately Maria's veins were very difficult to find and after some attempts they got what they needed. She is sore and sorry, but quite used to it.

We got home in time so Maria could have another brief nap while I madly prepared things for Ben's party.  Ben is not '10' until early January, but as many people are away during the summer school holidays it was easier to do something now.

We headed off to the party venue on the other side of town, called Zone 3 (laser tag). Everyone had a ball and Maria got through it. I made a basic '10' cake and didn't even bother decorating it. We just didn't seem to have the time to do much in the lead-up. That said, our first party away from home was a huge blessing and it went off without a hitch.

We left the centre at 6pm and it was still 37 degrees! Effie drove up and collected Tom. It was lovely for the kids, especially Ben, to have him stay.

Maria didn't get to sleep until nearly 11:00pm. I'm praying that she experiences good sleep as it will be another busy day tomorrow, starting with a meeting @ 9:30am with the Neurosurgeon, followed by a long gap before RT (but not long enough to go off and do much).

It's nearly midnight. The temperature has dropped a few degrees and there is now some light rain. The change has come, but we're hoping this rain will develop into something more significant.

Wed 16-Dec-09 (Family visit, RT 20/25)

The morning started with a visit from Effie and her kids (our nephews and niece). Maria's parents also came by. We had a visit from the physiotherapist as well and was able to change over from a bed cradle to a bed stick, which allows Maria to help herself up and out of bed.

Effie and her mum took all the kids out for lunch and went for a swim as well. It was a rather hot 36 degrees celsius. This gave Maria and I the chance to go to RT and also have a look at the Christmas display in the Paediatrics Ward. We also got to chat with one of our friends who is a nurse there.

We popped down to the shopping centre afterwards. Maria has slowed somewhat, even with her walker. Concerning Maria's mobility, her right leg is almost dead/immobile. I have to lift it in/out of the car and her bed. She is nearly at the point of dragging it, which may mean bringing her wheelchair into action.

The good news I can report is that Maria has noticed a little less pain in her back. This may mean there is some positive results from the RT.

Maria's parents left in the afternoon just after we got home (Maria went to bed and had a long sleep). Effie and the kids left early evening, with our nephew Tom staying on to attend a birthday party Ben will have with a small group of friends tomorrow.

Maria woke around 8pm and happened to come across our nephew Tom in Ben's room. She asked him how his night was (she thought it was 8am the following morning). He gave a confused response, which made more sense to Maria when she realised it was only four hours sleep she had.

In relation to Maria's sleep, it has been pretty ordinary of late. She's usually up around 2am and back to sleep around 6am. The radiation, daily chemo and continuation of a full medication regimen is knocking her around quite a bit.

Tue 15-Dec-09 (Maria home, RT 19/25)

We took pancakes to the hospital this morning to have with Maria before the kids went to school for the last time this year.

It was a busy day with transporting pieces of equipment home while waiting around to see what was to happen with Maria. A decision was made not to do an MRI on Maria's spine.

To keep a very long story short, we all arrived home around 7:30pm with the four of us exhausted. The kids were very patient and fortunately there was a room with a TV and videos to keep them occupied. The next few days will be busy with home visits from different professionals.

We're all happy to have Maria home.

Mon 14-Dec-09 (Maria's first fall, admitted to hospital)

The day started at 5:20am for Maria. She decided to dedicate the next couple of hours to cleaning up her room, albeit with great difficulty. Gabi came in to her around 6:30am and helped immensely for the second hour.

We attended the kids' Thanksgiving Assembly, which was such a blessing to be part of. It went for about an hour-and-a-half, so Maria was quite tired by the end of it. Immediately afterwards we grabbed some lunch and headed straight for the hospital for her RT.

Maria had her RT (18/25) around 1:45pm. As she was walking to me to leave (she was about 5 metres away and directly outside the nurses station), her right knee gave way and she hit the floor quite hard, taking the impact with her knees (mostly the right). She was still holding onto the walker as she fell back onto her bottom. It was quite a shock to both of us.

Myself and one of the orderlies lifted her into a wheelchair after we all established she was otherwise okay. We put her into a bed and waited for the doctor to come to discuss. The short of it is that she has been admitted with the intention of trying to expedite a palliative care visit and the equipment at home, as well as possibly conducting another MRI of her spine to see what the situation is. Apart from a regression in her mobility, she is now experiencing some twitches in her right hand and small finger, which the radiation oncologist believes may be related to the tumour (but not convulsions) as it is sitting in the T1 position, which can effect the arm and hand.

The two main possibilities are that: (a) the radiation is causing a lot of swelling in the area in question (inside the spinal cord in a sensitive spot), which would lead to an increase in symptoms; or (b) the tumour is unresponsive to RT. We pray it's the former.

At this stage it is not believed to be related to the brain tumour. I spoke with our oncologist over the phone who is out of town (timing always seems to be bad) and he said that the neurosurgery team had viewed the scan and felt there was no real change except for some minor bleeding in the tumour, but didn't sound concerned. The radiation oncologist who admitted Maria also viewed the MRI and said it was apparently very similar to September's scan (I ran a visual comparison of the Jun, Sep, and Dec scans side-by-side with a similar understanding from a layperson's view). From both of the professional accounts (i.e. ignore mine), that's one piece of good news.

I headed home to pack a suitcase (unfortunately I have this down to a fine art) and collected the kids (thanks Viv) on the way back to the hospital. Maria was highly agitated by the time we left. We all put it down to her not having slept since waking at 5:20am. Usually, she would have slept an extra few hours between then and now. The kids were exhausted by the time we got home. We all miss Maria already and can never get used to her absences.

As I had promised to make the family pancakes for breakfast tomorrow (as it is the kids' last school day for the year), we are going to take some to the hospital to enjoy together before heading off to school.

Fri 11-Dec-09 (MRI, RT 17/25)

We got to the hospital at 9:45am in preparation for Maria's MRI. She went in around 10:15am and came out just before 12:00pm. She said of all of the MRIs she's had, this was the most relaxed she had felt and actually experienced what was like her being wrapped up and hugged by the Lord.

I ordered a copy of the scan and received it a few minutes later, together with Maria's MRI of her spine and the CT taken of her brain when she was admitted on the 18-Nov.

We had a short break before heading to RT. They apparently had two of the three machines working, but one went offline again while she was there. It was a blessing that somehow Maria didn't have to wait like others.

I sat down tonight and had a look at the two MRIs. I ran comparisons between today's scan and her previous two (Sep, Jun) but I won't comment as I don't have the medical expertise and will wait for the neurosurgeon to assess it and speak with us next Friday. The tumour in Maria's spinal cord canal is approximately 16mm x 5mm. If you think that a long grain of rice is about 5mm x 1mm, that is like laying 16 grains horizontally and stacking them on  each other.

Maria's symptoms have not improved. In fact there has probably been some regression. She is experiencing more head pain and has increased her need for pain relief in recent days. The numbness in her left leg has now migrated up to her hip. Her right leg is still unbelievably weak and she needs to lift it up with her hands to get it into the car or on/off the bed.

What I forgot to mention in yesterday's entry was that because of the issues, her Oncologist asked that we increase the steroids from 8mg to 12mg (we started today) to see whether that has any effect. The radiation will cause swelling around the treatment area and this could be the cause of the increase in symptoms. She 'soldiers on' around the house with her walking stick and walker, relying solely on the walker while we're out. She loves the idea that it is her favourite green.

Thu 10-Dec-09 (Oncologist, RT 16/25)

It was a long day for us. We got to the hospital an hour before our scheduled appointment with the Oncologist to have Maria's blood taken. We hung out in the cafe before arriving just before our 12:00pm appointment. Nearly two hours later we got in to see him. There was some paperwork he needed to prepare for me so we agreed I'd come back around 5:30pm. We got down to Radiation Oncology (we had notified them earlier that we'd be late) to find that two of the three machines were out of operation and they were running nearly an hour-and-a-half late. This meant that Maria didn't have to wait long because all of the other delays. Overall we were at the hospital for well over four hours.

There was a miscommunication with the Palliative Care team in that the hospital-based team saw Maria and quickly realised that this should have been a referral to the Palliative Care (Hospice) team. We've been told to await their contact.

I went back to the hospital later and met with the Oncologist. As the office was closed we were able to sit around and chat a little while he was preparing a letter for me. I mentioned to him that I had been shown a letter from the Radiation Oncologist who mentioned the possibility that the spinal tumour could be a separate primary tumour rather than a metastasis, but it was rare. His view was that this was a more accurate assessment of her case given the location (i.e. T1) and position (i.e. inside the canal). Regardless, the treatment Maria is receiving would not differ.

Maria's Oncologist has been lovely and really cares for Maria. He asked about Maria's state of mind as he is amazed at how well she presents and is always smiling, regardless of her prognosis. I explained that although she has experienced some minor neurological deficits from the surgeries, she is completely coherent, lucid and just as intelligent (and far more wise) than before her diagnosis. I briefly explained that our faith and the prayer of family and friends carries us.

Maria - always other-centred!

I probably mention this ad nauseum, but it's worth the comment. Maria continues to inspire me through this journey.

One thing I failed to mention was something that happened last Friday when we took the kids out of school. I didn't write about it at the time as I only became aware of it in a recent conversation with Maria.

While the kids and I were inside a shop, Maria was sitting on a bench outside. A man approached her and he was clearly someone who lived on the streets. Apart from being dirty and disheveled his nose was running and he was holding a tissue to it, which Maria was certain had been used a number of times before. He stopped and looked at Maria and she greeted him. She moved over and offered him a seat on the bench beside her (this is while others are side stepping around him). He was very polite and thanked her. Maria offered him a tissue, for which he was apparently extremely grateful. Maria gave him her entire packet. They chatted for a few minutes before he farewelled her and headed off to who knows where.

Maria spoke of this man, feeling so much compassion for his situation. She felt this encounter was important for a few reasons, especially that it made her appreciate all the things she has and is blessed with.

Maria's act of kindness drew me to the book of Matthew (Ch. 25), specifically verses 34-40 (see below), which is a great challenge not only for me but everyone else in society.

"Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'


"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?'


"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."

Key praise and prayer points

PRAISE

• The time (each and every day) we have together as a family.
• Maria's tolerance of the steroid reduction.
• Her ability to take the use of the walker and walking stick in her stride (pardon the pun).
• Maria's amazing faith.
• The kids' loving hearts, strength, courage and maturity.
• With only four school days remaining, we are so thankful for their transition since our return.

PRAYER

• Miraculous healing (should that be according to His will).
• That the radiotherapy has a positive effect/outcome.
• An improvement in Maria's legs, i.e. for increased strength to the right leg and for feeling again in the left leg.
• An improvement in the area of Maria's bowels.
• That the MRI of Maria's brain (to be taken this Friday) goes well.
• Maria's sleep, which is currently quite disrupted.
• For a sense of "peace that surpasses all understanding" in our home.
• Energy, rest, etc. for the four of us.

Thanks for taking the time to include us in your prayer time!!

Wed 9-Dec-09 (Doctor, morning tea, RT 15/25)

I visited our GP (family practitioner) this morning after dropping the kids to school. Next stop was home to collect Maria and take her for a morning tea catch-up with a dear friend. This gave me the chance to pop over the hospital briefly. I joined Maria and Viv for a while, before we did a major grocery shop. We arrived home with just over an hour before we would be on the move again to the hospital for her RT. Maria took the opportunity to have a power nap.

We got ourselves to the hospital just in time for RT. I dropped Maria off and needed to head back to the supermarket as I'd left a bag behind. Upon my return Maria was still waiting for her treatment. One of the radiation oncology social workers (who saw Maria yesterday when I wasn't there) came and introduced himself to me and we had a quick chat, confirming that the Palliative Care team will be catching up with us after tomorrow's therapy. As RT was running well over an hour late, I had time to watch some of the nurses hard at work decorating for Christmas. During this time I saw someone we used to attend church with, who was there with her mother. I also chatted with an elderly gentleman who happened to be from Cooma and discovered that my brother-in-law Brian is his GP. He couldn't stop speaking Brian's praises.

Because of the delay we got home in time for me to head back out to collect the kids from their play date, but it meant that I forgot to have Maria's blood taken in advance of her meeting with the Oncologist tomorrow. We will get into the hospital a little earlier tomorrow morning as they have results available within an hour.

Tue 8-Dec-09 (RT 14/25)

Another busy day with an Occupational Therapist coming to assess our home for current and future needs regarding bathrooms, entries/exits, and steps. That was a lengthy visit, during which Maria's parents arrived.

They took Maria out for lunch to the Hellenic Club (of course) and to hospital for RT (14/25). Those few hours gave me the opportunity to sort out some matters. From all reports Maria, Mama and Baba had a great time together.

We cut Maria's dexamethasone (steroids) from 12mg down to 8mg without any significant adverse effects.

Mon 7-Dec-09 (Social Worker visit, RT 13/25, Christmas Carols))

Our morning started with a Social Worker visiting at our request. She has seen us before and is very nice.

Maria had an early afternoon RT session (13/25). She is now over the half-way mark!!

At 5pm the junior section of the school put on a Christmas Carol performance. The weather cooled nicely (as it was a hot day) and a nice time was had by us all. Here are a few shots of the afternoon.

Weekend 5 & 6-Dec-09

On Saturday we hung around the house while Maria's dad came to place some roofing on our old pergola area out the back. He worked hard outside all day, while I kept things functioning inside. Maria slept for a few hours during the afternoon. Maria's Dad slept over that night. This is the first time we have had anyone stay with us since Effie looked after the kids during Maria's hospital admission and surgery in June. In the evening we had a more in-depth discussion with the kids about Maria's progress.

On Sunday we visited a church that had Natalie Miller and her puppets. Not only was she an amazing ventriloquist (and funny), but she delivered some powerful messages to the kids (and adults) through her presentation. We had a pretty lazy afternoon as we all felt extremely fatigued from a hard week.

Fri 4-Dec-09 (Ballet, bowling, RT 12/25)

We kept the kids off school today—the reason being that Maria was taking Gabi to see the London Ballet perform "Angelina Ballerina" while I took Ben ten-pin bowling for boys time-out.

Ben and I dropped the girls off (seeing the large Christmas Tree outside the Theatre, which we haven't visited since Christmas 2006) before heading out to one of two alleys in Canberra. We arrived with 120+ school kids and realised this was a bad move. Fortunately I called the other alley (on the other side of the city, but closer to home) and was able to get in there. We played three games, with Ben winning the last. Funnily, he seems to have suppressed the other two games and is more than happy to discuss how he "thrashed Dad". It was fun and a good time together.

We all had a McDonalds lunch treat (separately). We drove back to the city and found Maria and Gabi about to move on. Maria and Gabi loved the performance. We shopped a little together before heading to the hospital for RT.

We arrived at the hospital @ 3:00pm. Maria's appt wasn't until 4:00pm and we were told on arrival that they were running 30mins late. Fortunately they took Maria to a bed and she slept for the next hour or so while the kids watched TV in the waiting room and I took phone calls discussing more medical appointments for next week. I was right next to the equipment loan section of the hospital so I checked in and they had Maria's equipment ready for collection.

Maria is approaching the half-way mark of her RT, having her 12th session (of 25). On Monday afternoon she will pass over the peak.

Maria slept for a while late this afternoon into the evening, while I had dinner with the kids. It is now nearly 11:00pm and she is up watching TV (has a 'second wind', I think).

Thu 3-Dec-09 (hospital appts, RT 11/25)

Maria came in the morning to drop the kids off so we could head straight to the hospital for her first appointment with the head of infectious diseases who has been managing/monitoring Maria's cerebral infection. It was a good opportunity to update him on Maria's new setback and discuss her throat issue. It is a real juggling act as there are antibiotic being used to help her throat, but should the problem be thrush-related then the antibiotics will exacerbate the problem. He felt it was either thrush/RT and told Maria to cease the recent antibiotic.

Immediately after that appointment we headed to RT. After Maria's session we met with the registrar and Maria was also reviewed by the head of the department (who initiated our case a couple of weekends ago). They agreed that the antibiotic should cease.

We went to Woden Shopping Centre for lunch. When walking to the car park, Maria's right leg buckled in quick succession and she was fortunate to stay upright. She gets the occasional buckle and has managed to date to keep herself upright. We realise it's time for the walking stick to come into play.

Wed 2-Dec-09 (Physio visit, RT 10/25)

A physio who saw Maria some time ago came again for a visit after a referral from the hospital. She spent some time and came up with items that Maria will need, including a walking stick (she had one on hand and was able to leave it for her), a seat walker, shower chair and throne (goes over the toilet bowl and has handles on each side).

Maria was reviewed again after her RT session as her throat doesn't seem to be improving. She was given a script for liquid morphine and some medicated lozenges. Maria had them later in the evening and tolerated the lozenges well, but refused any further doses of morphine due to its taste.

Tue 1-Dec-09 (RT 9/25, 1st day of summer, SLEEP!)

Today is the first day of summer in the southern hemisphere. It has been a windy day in the low 20s, but will warm up as the week progresses.

Maria slept through the entire night, waking up at 8:00am!! Praise God!! I'd have to look back over the last nine months of entries, but from memory I can't recall Maria having a single block of sleep for this long. We're praying that this will continue.

Her RT was on schedule so it was a quick round trip (approx 1hr door-to-door).

Over these next two weeks the kids (their school's junior section) are going out each day for swimming lessons. The kids are enjoying this distraction that breaks up (i.e. shortens) their school days.

Mon 30-Nov-09** (RT 8/25, new chemo schedule, Maria's throat)

The day at the hospital was much longer than expected. We had an 11:00am appointment with the Oncologist, but didn't get to see him until around 12:00pm. It worked out well because due to that delay and the length of the consultation (an hour), it meant we just had enough time to grab a sandwich before Maria's RT. As she had to wait at RT, I was able to slip away and collect her next cycle of chemo, the dose of which has now changed. I felt like I had been transported back a number of months as she is now on daily chemo for the duration of her RT, at the same dose when she had her concomitant (i.e. RT + chemo) therapy in Israel. She took her first dose a short time ago (around 10:20pm).

The day at hospital was extended as after Maria's RT the Registrar who saw her late last week examined Maria's mouth and throat because of her struggle with a lot of throat pain and discomfort. The doctor felt it may be a little too early for it to be RT related, so she arranged for swabs to be taken and in the interim gave Maria an antibiotic in the event it is an infection. She also prescribed some tablets and liquid to address the thrush in her mouth. The nurse who had to swab Maria was a little nervous (although experienced) as she recently had patients who didn't tolerate it well. She took two samples quite deep from Maria's throat. Maria did not flinch or gag, which made the nurse call her "brilliant".

Maria is "over" taking so many tablets. This has now been exacerbated by the numerous additions today and in the last week, as well as the fact that she finds it extremely difficult to swallow. Your ongoing prayers on this issue are appreciated.

We got home after end-of-school, but fortunately we had already prearranged for a friend to collect the kids (thanks Karen). I collected Gabi and Ben stayed on to be part of his best mate's birthday party. They went to a place called "Zone 3", which he thoroughly enjoyed. He has been keen for some time to have his party there also.

Sun 29-Nov-09 (Margaret Court)

Today we decided to visit a church down the road as we were aware that the guest speaker was none other than Margaret Court, the most accomplished female tennis player of all time. She won 62 Grand Slam events (including the full Grand Slam in 1970). Of those 62 titles, 24 were singles . It's quite amazing when you think Roger Federer (as the most successful male) has only won 15.

Margaret pastors a church in Western Australia. She spoke with such conviction and gave an awesome testimony.

Part of our key prayer in the car enroute was that the kids would be comfortable in their respective Sunday School classes as we were prepared for the possibility that they knew no-one. They did see a couple of kids they knew a little from school, but our prayers were answered through another mum sitting near us who introduced her kids to Ben and Gabi (similar ages). They both ended up having someone to "hang out with".

The church was very welcoming and had a good cafe lounge set-up for that purpose.

Anyway, as mentioned in an earlier entry we have quite a bit of searching to do over the coming weeks and months, which can be complicated by potential obstacles such as hospitalisations, illness, etc.

Fri 27-Nov-09 (Gabi @ home, RT 7/25, work finished @ home, prayer points)

The morning started with the painter here for his final day. Dave has been excellent and it has been nice to spend some time chatting with him as he worked away without much of a break over the week.

About 7:45am the cooling technician turned up and repaired our evaporative cooling unit. There were a couple of blessings in that: (a) it only required the change of the controller, working out to be about a 1/3 of the cost we had budgeted for; and (b) although the new controller was a different shape and style, the painter was able to patch the area and paint it so you can't even tell that this change has been made.

Gabi stayed at home as she hasn't felt well. Maria also complained of a sore throat this morning so I encouraged her to come along. Gabi was diagnosed with a virus, which will pass soon. As soon as she looked into Maria's mouth she said it was quite ulcerated. We suspect this is a result of the radiotherapy (we didn't expect it so soon). We discussed some plans to counter it, with the primary aim to speak with RT staff later in the day.

After morning tea at a local bakery, we got home in time for lunch. Maria had her long afternoon sleep as she continues to struggle with fatigue. She is also finding it increasingly difficult to get in and out of the car.

We collected Ben from school and headed to the hospital for Maria's RT session. After RT, we took Maria around to the other side of the hospital for a blood test in preparation for her meeting with the Oncologist on Monday. That went smoothly. Even the person taking the blood commented on how "butchered" Maria's arms look at present.

Enroute home we collected a DVD (Get Smart series - which the kids loved) and some takeaway food. When we got home we realised that we hadn't addressed Maria's throat issue while at RT.

Albeit we have been blessed by many of the tradespeople we've dealt with, it is nice to know that we have our home back for the foreseeable future.

PRAYER POINTS

Firstly, I want to once again thank people for their prayers and encouraging messages. From time to time I receive messages from long-lost friends of ours who say they have been following our journey via the blog, which is a huge encouragement to persist.

These are the key prayer points at present.

• Shrinkage/elimination of the brain and spinal tumours.
• Positive response from the spinal RT (i.e. regaining of sensation and strength in legs, stabilisation of her bowel and bladder function).
• Diminishing of the RT side effects (namely the ulcerated throat).
• Minimisation of the current steroid side effects (i.e. agitation, significant weight gain, muscle deterioration).
• Restoration of health for Gabi.
• Continued positive changes in our attitudes and to retain that joy in the face of adversity. We have all been working hard on that.
• Energy for us all as we are all feeling more "wear and tear".

Thu 26-Nov-09 (RT 6/25, Gabi sick)

Firstly, I wanted to mention that we have been blessed with dinners over the past couple of nights from a dear friend (and neighbour up the cul-de-sac). He really knows how to cook up a storm. Thanks Max.

It was a strange night last night. While Maria and I were chatting on her bed we could hear Gabi groaning. This went on for a while (actually until I prayed over her). I woke a few times throughout the night, as did Ben, Gabi and Maria. Ironically, Maria was the one who had the best sleep. Gabi ended up in my bed around 5:00am and tossed and turned until I got up before 7:00am.

Gabi felt hot and refused breakfast. I was tempted to keep her home and arranged a doctor's appointment, but she decided she didn't want to miss music in the afternoon and felt better (medicine kicking in). After dropping the kids off at school I headed into the office to update my superiors on the situation as well as set up my out of office phone and email messages. Work has been so supportive throughout and today was no different. I was also offered practical support from colleagues, which was very generous and touching.

It was another hot day and Maria didn't feel like venturing out. After lunch she rested, which gave me the chance to do some shopping. As I was paying at the check-out, I received a call to let me know that Gabi was unwell and in the school's sick bay. I rushed home (based on the previous entry I should qualify this comment to say that I travelled within the speed limit), unpacked the cold items and headed off to get Gabi (and take Ben out early) as I was now racing the clock to get home and take Maria for RT.

Everything fell into place and we arrived on time. After the saga, Maria had to wait as there was some difficulty with another patient (I overheard she was panicking when having a mask placed over her for her treatment - like what Maria had in Israel). This gave Ben the opportunity to work on some large puzzles that others must do while waiting for their loved ones. Gabi watched TV while I worked on a puzzle book they have (this is my daily time-killing ritual). Maria showed the kids where she changes into her robe and called us up prior to her treatment so they could see the room (like what we did in Israel). I got to take a photo of them. Gabi did well to smile as she was going downhill by this stage.

Interestingly, the radiographer who had come in over the weekend (looking after Maria again today) told us that she was out having lunch with a friend and discovered that this person was a "common friend". It is such a small world! It turns out that she is a neighbour of our friends and attends church with them. It's always nice to have a "brother" or "sister" around as there is that common link.

The painting is nearly done and it is looking great! We can't wait until we can move everything from the dining room back into the kitchen. Unfortunately there is a lot of dust, etc. which needs to go first. Although the dining room has been a store room since our return, we are blessed to have that spare space.

Gabi will stay home tomorrow. I have arranged a doctor's appointment for her in the morning. Although it may only be the flu, we are having the kids checked out as we (and our doctor) don't want Maria at any risk of infection.

RT is at 4:00pm tomorrow, so the kids will join us again. Maria will also have a blood test, which she always does prior to her meeting with the Oncologist on Monday. It will be interesting to see what his views are regarding her next cycle of chemotherapy.

A couple of additions to the previous entry

I forgot to mention a couple of points in the previous entry:

1. Please pray for Maria. She has been quite agitated over the last couple of days and has reverted to poor/broken sleep through the evening. Both are side effects of the steroids, which as mentioned has been bumped up to post 1st surgery (Israel) levels.
2. While Maria was in a bra store (hence why I was hanging outside) I heard a couple of young ladies who run a clothing stand speaking with each other in Hebrew. I went over and chatted with them in my limited Hebrew. One was from Petakh Tikva and the other from the north of Israel (however had mostly lived in Tel Aviv and Italy). For a moment I had been transported to the Sheva Ha'Kokavim (Seven Stars) Shopping Mall in Herzliya. It was strange but not the first time I've had this experience in Australia.

Wed 25-Nov-09 (9mths, RT session 5/25, speeding ticket)

I know in yesterday's entry I already foreshadowed that today was 9 months since Maria's first surgery. I felt it important to re-state this point as it is another milestone Maria has passed in this journey.

RT session was for 10:10am, but they were running late as one machine was offline. Afterwards, one of the senior Radio Oncology registrars saw Maria for a mini-review. Providing Maria is tracking well, this will be a weekly occurrence. It looks as though they may taper her down from her current dexamethasone dose starting next week.

The weather has warmed up somewhat, so we headed to the nearest shopping centre to get a few things. Maria has become more unsteady on her feet and is very slow. However, she did a lot of walking, which is a good thing. The other positive so far is that her symptoms have not progressed since commencing of RT.

We got home only a short time ago and Maria virtually collapsed into bed.

We received a camera speeding ticket in the mail today. The event occurred last Wednesday when I drove Maria to the hospital from the doctor's surgery. Adrenalin must have played its part, although I don't recall driving over the limit. I'll need to have a look on the map to confirm the exact spot. I will consider writing in to mention the context of the incident (as well as seeing whether they'll take into consideration that the speed wasn't that excessive) and see what their views are. Given the economy and the fact that I have erred, I don't expect them to be sympathetic.

Tue 24-Nov-09 (RT session #4)

Maria has just gone for a sleep. This gives me a few minutes to punch out an update before collecting the kids from school.

Maria had her fourth session of radiotherapy (RT) today. However, as it was her first as an outpatient it caused all sorts of confusion when signing paperwork. The poor young lady at reception said that Maria didn't have a referral as the neurosurgeon's (dates back to her June surgery - she didn't have any radiation then because she received it in Israel) had lapsed so she needed a letter of referral from Maria's GP (physician). I explained that the GP referred us to the hospital on Wednesday and a new tumour, now in the spine (unrelated to the original referral for her brain tumour), was located on Friday while she was an inpatient under the care of an Oncologist. Furthermore, as the Head of Radiation Oncology visited us on Friday night and opened the Centre to treat Maria over the weekend, we assumed that there was some internal correspondence that would be sufficient. I was a little confused as to why Maria's GP would have to write a referral to thank the Radio Oncology Dept for seeing/treating Maria, albeit she (the GP) had no direct involvement in ordering the MRI that located the spinal tumour, nor was she the instigator of this line of treatment. We all started laughing when she said it was something atypical/new. How many times have we heard this through the journey? I called Maria's GP who simply resolved it with a faxed letter (thanks Suzanne). She is so accommodating!

On another note, tomorrow will be exactly nine (9) months since Maria's first surgery, and over more than five months since her second surgery. Time seems to have flown, yet sometimes I look back and feel as though it all started two years ago!

The painters will probably be finished by tomorrow afternoon, so we'll have the latter part of the week to enjoy the kitchen in its finished state. I'd better run....

Mon 23-Nov-09 (Maria home from hospital)

A quick note to say that Maria was discharged just in time for us to collect the kids from school. They were very happy but cautious as they thought she may only be out for a few hours.

We have been given Maria's radiotherapy schedule, which isn't too bad considering they had to squeeze her in. Her last treatment (as I had guestimated) is on the 23rd of December.

The painters started on our kitchen and adjoining areas first thing this morning. We were supposed to be out town for the week, so it will be interesting as we work around each other. They are nice guys so it shouldn't be a problem. Apart from her radiotherapy sessions, I'll have to keep Maria out of the house a bit more than planned because of the paint smell.

Maria had a lengthy early evening sleep. By the time she got up to take her medication (now quite awake), I was ready for bed.

Sun 22-Nov-09 (day release, radiotherapy, visit @ home, work)

The day started with me arriving at the hospital early for Maria's next session of radiotherapy. It was a lot quicker this time. It was another blessing that the three people had once again come in on their weekend just for Maria.

Maria was given a day-pass from the hospital as there were no other meetings scheduled for the day. We popped down to Gloria Jeans cafe in Woden to celebrate. We got home just as the kids were being dropped off. They were great for a while, but as the afternoon progressed they both (esp. Gabi) went downhill in terms of their behaviour and attitude. It seemed to be a combination of fatigue from a busy week/weekend and their expression of excitement in having mummy home for a while. Maria had a nice nap in her own bed for part of the afternoon as she was tired from last night because her two new neighbours (young ladies) through no fault of their own, moaned and groaned throughout the night because of their pain.

We sadly dropped Maria off around 6pm. At least the kids had fun sharing the responsibility for pushing her in the wheelchair from the car all the way to her bed.

On the way out I received a message from our dear friends who we were in Israel with. They came over for a coffee around the kids bedtime. The kids were really happy to see them as neither had seen Trish and Steve since we returned to Australia. After putting the kids to bed we hung out for nearly three hours. I have been able to catch up with Trish at work for the occasional coffee, but hadn't seen Steve since Israel. It was great time of fellowship.

The plan at this stage is for Maria to have radiotherapy some time in the morning (they are going to fit her in) and perhaps coming home afterwards. We have been non-committal with the kids as we don't want them to get their hopes up, only to be disappointed.

I contacted work by email on Friday evening to advise them of the sudden change in our circumstances. They won't see the message until the morning. I will now revert back to caring for Maria on a full-time basis until I can establish how the new radiotherapy regimen and any other/new medical needs for Maria will impact on my ability to work.

Sat 21-Nov-09 (radiotherapy commences)

The morning started early as I dropped Ben and Gabi to dear friends so I could be at the hospital for Maria's initial radiotherapy session. I got to the hospital just in time to escort Maria to the Radiation Oncology Centre, which is quite new and very impressive.

We were greeted by the professor, who had opened up just for Maria. He is very down-to-earth. For example, on the previous evening when he met us he only introduced himself by name - not title - and without prompting gave me his mobile phone number to contact any time, which is something no other doctor has been willing to do. He is also a cool dresser, and greeted us also with some delicious muffins he had purchased from a patisserie enroute. He even made me one of his special non-hospital coffees (a friend for life!). He was very openly communicative throughout and had the knack to explain things in simple lay-terms. Two of his staff also arrived (who were both lovely) to prepare and treat Maria. As a result of the preparation, Maria now has four permanent tattoos on her neck and back. After our many discussions with the kids about "needle tattoos", it was now up to me to try and explain that mummy had—contrary to her advice—gone and taken the plunge!

The whole process took just under three hours. They are going to open up again in the morning to give Maria her second dose. There will be 25 sessions in total, which by my calculations will take Maria up to 23-Dec. We are so blessed that they have decided to act so quickly and fit Maria in for treatment (apparently they are stretched). Great praise point!

After driving Maria in her wheelchair back to her room, I headed off to grab Gabi for a birthday (pool) party. I was fed lunch (thanks Gary & Gill) beforehand. It was so hot and humid (the latter being unusual for Canberra) that the kids enjoyed 2+ hours in the pool. In the interim I got some washing done to replenish Maria's suitcase. Our dear friend Paul came over to finish off the lighting for our kitchen and adjoining rumpus room. That was another blessing.

I took Gabi from the party back to our dear friends' place—both are staying for a sleepover and going off to church with them in the morning. This will allow me to get to the hospital early tomorrow.

It keeps going...our sister-in-law Cass was in town so she got to visit Maria then come over and drop off a meal she had prepared at a friend's place earlier in the day. Thanks Cass!

Maria developed a relationship with another lady across from her and she headed off earlier than expected which was a blessing for she and her husband as they live outside of Canberra. They got to say their goodbyes with the intention of keeping in touch.

Maria's current oncologist visited during my absence. She said that he said she could pop home for a few hours tomorrow (as there won't be any visiting specialists/teams) and that they will aim to discharge her after Monday's treatment, providing she shows no negative responses to the radiotherapy.

I went back to the hospital at dinner time. We hung out in the hospital cafe (which was so quiet) and chatted about all sorts of things. I read over some special emails we've received. We've appreciated the words of support, and especially the prayer. We then did a huge walk (Maria walked the entire way) around the hospital, then hung out in the Neurosurgery Ward visitor's lounge for a while. I'm hopeful that this exhausted her enough for a good sleep.

Because of the treatment, Maria's dexamethasone (steroid) dose was increased again from 8mg to 16mg. It's hard to believe that she was on only 1mg a few days ago and the last time she was on 16mg was months ago in Israel. That said, we understand the need and benefit, albeit it comes with so many adverse side effects.

Some photos taken at the hospital today

To put each into context, the photos are of:

1. Maria on her bed
2. On bed again with part of her view in the background
3. Flowers from the kids (after 2nd MRI)
4. Dinner in the hospital cafe (after diagnosis and advice on radiotherapy)

Fri 20-Nov-09 (medical results...new challenge ahead...radiotherapy starts tomorrow))

I am now at home and have put the kids to bed. It has been a long day and in a lot of ways our prayers were answered (following on from the issues of yesterday). Unfortunately some of our prayers were not answered in the way "we" had hoped.

I have just spoken with Maria and we agreed to sending a blog entry with sufficient information for prayer points:

The summary is as follows:

• The oncologist we met today and his team were great. They agreed that an MRI was the priority course of action and got Maria in (which is no easy feat regardless of who you are, let me tell you).
• An MRI was undertaken this afternoon. Just after returning to her bed, they requested she return for a second scan as they had located a lesion in her spinal cord and wanted to investigate further.
• There is a lesion (i.e. tumour) actually inside her spinal cord at "T1". They said it is extremely rare for this to happen inside the cord (we reminded them that so much about Maria's situation has been atypical and "rare" all the way through).
• The area the tumour is sitting in, explains the effects to her motor and sensory areas in her lower body.
• They believe the lesion is some of the GBM (her brain tumour) that has "seeded" or "dropped" down through the central nervous system. The neurosurgeon was not willing to do a biopsy because it would be an unnecessary risk, given they have been able to pretty much establish its origin.
• The head of radiation oncology came this evening to chat with us. He arranged for radiotherapy to commence tomorrow morning.
• The tumour is such that it is clearly visible and defined, which should allow for good targeting of it.
• A major downside to the radiotherapy (apart from the obvious) is that Maria will now have it daily (Mon-Fri) for 4-5 weeks. This will probably take us through to Christmas.
• We are not sure how soon she'll be discharged. They'll probably keep her in for a few days to see how well she tolerates the radiotherapy.

Gabi and Ben finally got to see Maria today after nearly three days. Unfortunately the timing wasn't great as they saw her between the two MRIs when the "new lesion" was being discussed, then also around when we chatted with the Radiation Oncologist professor. At least we were able to have dinner as a family in the hospital cafe.

Ben and Gabi are both struggling to make sense of everything. Gabi is especially expressive about her sadness. While they see the whole incident as a blow to next week's holiday—which will need to be deferred to next year—they have shared their sadness and shock over having to face another hurdle.

I'd be grateful for your prayers over the following:

• Maria – healing and ongoing peace and strength. Also for any procedures to go as smoothly as possible (She was butchered just before the MRI because of a canula problem and - that's another story for another time).
• Me – ongoing strength and patience
• Kids – comfort and that inner peace. They've always coped amazingly well considering, but the cumulative effect is showing.
• Medical staff – discernment, wisdom. We are thankful and blessed as to how all medical staff have been today and how they are all doing everything they can for Maria and us as a family.

Maria continues to be an inspiration and takes things in her stride. She sees every moment as a blessing, whether it be a good or bad moment. We bumped into a few people just after discovering this new challenge and they couldn't believe how Maria discussed this new challenge so matter-of-factly.