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.