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.

Extreme temps (hospitalisation a blessing to Maria)

As I mentioned in an earlier entry we have been without cooling in our home since returning to Australia. We pray this will be rectified tomorrow.

Today temperatures hit 45.7C (114.3F) in parts of South Australia with 43C (109.4F) in its capital Adelaide (hottest recorded temp there for 16 years!). Lightning caused some severe fires, which are being bravely fought as I type.

Here in Canberra it was in the high 30s today, with an expected maximum of 38C (100.4F) tomorrow.

Maria is amazing at viewing blessings in all situations. She sees her time in hospital (an air-conditioned room) as one of those blessings. It's hard to argue at times like these.

Thu 19-Nov-09 (frustrating day - Maria still in hospital)

It was a terribly frustrating day. I will try and keep this as brief and unemotional as possible.

As the kids were staying with friends, I was able to get to the hospital early to meet the doctors doing the rounds. Three teams (neurosurgery, neurology, oncology) met with Maria at different times, conducted their own physical assessments with slightly different views on what may be the cause of her new symptoms. What they agreed on is that this is somewhat of an atypical situation.

Unfortunately the rest of the day only involved waiting around with an x-ray taken of Maria's back/spine around 2:30pm.

It wasn't until I became more assertive (felt like I was back in Israel) later in the afternoon because of a lack of action (a little contrary to discussions earlier in the day) that I established: (i) we weren't going to receive any feedback on the x-ray today; (ii) there would be no MRI(s) conducted today; and (iii) Maria won't be seen by anyone until the morning.

Had this been communicated earlier, then I could have collected the kids from school (Gabi is a stickler for routine as is always especially affected when Maria is hospitalised) and arranged for them to see Maria. They miss her greatly and by the time they see her (after school tomorrow) more than two-and-a-half days would have passed.

I have a lot of questions to ask the specialists in the morning. I'm hoping that unlike today, I can elicit some more answers and a timetable or plan of some description. I (with no medical background) have a potential line of enquiry given these symptoms and will be seeking their feedback and perhaps investigation in that direction if they have nothing more plausible to offer themselves. I briefly (and humbly) shared my view with Maria's neurosurgeon when passing him in a hallway today, to which he responded that it is certainly possible and shouldn't be discounted.

My final frustration is that there is no clear indication as to how long Maria may need to remain in hospital. Their view is that they won't release her until they can get to the bottom of the situation and an MRI is probably going to be the best mechanism to achieve this. I agree, but am trying to take it a step further to have the action taken (i.e. do the MRI). I appreciate Maria is not the only patient in the hospital, nor is she the only urgent case. However, each day of delay means "to me" that there is no resolution (with flow-on effects for us as a family or Maria's status). That resolution (from a medical perspective) could simply rule out anything critical, which would allow the bed to be freed up for a more serious/urgent case.

At this stage they notionally have her admitted until the 24th. If this is the case, the family holiday I booked for next week (which isn't looking great now anyway) will need to be deferred. The kids were looking forward to a week out of school.

Our prayer is that the doctors will have the wisdom, discernment and a spirit of cooperation as they try to get to the bottom of this situation.

Wed 18-Nov-09 (Maria admitted to hospital)

Before I start my 'essay' I should mention at the beginning that her admission does not mean that things are bad...please read on if you have the stamina.

The plan today was that Maria would take the bus to Woden. She would have a massage to try and relieve some of her back pain (sorry Janelle for giving up my birthday present - it was for a better cause).

Maria complained last night that her right leg was weakening. Although things hadn't improved this morning, she was determined to do the trip 'solo'. I headed off to school with the kids and then to work. While at work I chatted with Maria's sister and brother-in-law (both GPs). They had some concern about her condition, particularly the identification of a few new symptoms (which I'll omit from this entry). I contacted Maria's GP, who fitted her in at the end of her day (lunchtime today). I left work early and collected Maria after her massage. She said the masseuse was gentle with her.

After further investigation and Maria identifying some of these new symptoms, Maria's GP wanted us to head straight to hospital for a more thorough examination and imaging. She faxed a letter in advance of our arrival (we are only 10-15mins drive away). Maria was seen reasonably quickly and after an hour a bed was made available in Emergency.

The doctor who examined Maria had recently been a registrar with the Neurologist she saw a few weeks ago. He was very nice and also did a very thorough examination. To his credit, he was the first doctor to put a canula into Maria without there being an issue or any significant pain.

One consideration (which our brother-in-law was concerned about) was that perhaps there was a fracture in the back (weakening of bones from steroids) and a vertebrae could be pushing against the spinal cord. It was obviously hard for him to make any diagnosis without seeing her. After working all over her body, the doctor assessed that it was probably originating from the brain and ruled out any spinal issues including any abscesses. His rationale was that she has not suffered from any fevers or signs that would support this. We explained Maria's cerebral abscess to him (i.e. no evidence of fever) to try and put her situation into perspective (Maria was calling herself a "freak"). His mind remained open.

Maria had a CT less than 3 hours after our arrival (which is very quick in the public hospital system). We were told that Maria would be admitted and one of the neurosurgical registrars would visit to discuss further. Maria was told she could now eat and drink (she had been quite hungry and thirsty) so that was an encouraging sign. However, we were told that Maria would be put on 16mg of dexamethasone (i.e. 4mg x 4 time daily). We were extremely disappointed as we had worked Maria down to 1mg and she wasn't having any adverse effects. We said we'd discuss further with the neurosurgical team. It got us thinking whether the CT showed a lot of swelling/oedema.

One of the neurosurgical registrars (who we know well) came after a while. He said the CT didn't show anything different to her September MRI (Praise God!!). He also spent some time testing her. He wanted to do some more investigation tomorrow (was enroute to two surgeries) as he was perplexed because: she showed good reflexes and no apparent weakness in the numb leg; she could walk pretty well considering she had no sensation at all in her left leg; but now had this new weakness in the right leg. He said she was atypical, to which we responded that she has been since the beginning.

He said that a possibility was neuropathy resulting from the chemotherapy, but wanted to admit Maria so they could run an MRI tomorrow (otherwise we'd be waiting until her 11-Dec appointment) to be certain the CT didn't miss anything. The downside to this is that chemo-related neuropathy may mean ceasing the chemotherapy until things are resolved. The problem is that this may not be an option because the option are very limited after this first line of treatment. The oncological team will come through in the morning so we can discuss this further.

It was amazing to watch Maria throughout the day respond to tests on her right leg (some which hurt), yet she had no response at all in the left leg.

Maria was moved to the Neurosurgical ward around 8:30pm. She was greeted by one of the nurses who remembered her fondly and welcomed us back. Her bed was in a new room that was opened earlier that day. Unfortunately the new fancy bed did not work properly. She is in there with three other ladies (all are some years older). I headed home to grab some things for the kids (staying with dear friends). After dropping off their essentials I headed back to the hospital to supply the nurses with some of Maria's meds, which aren't available to them after hours. I also packed a suitcase for her.

I left around 10:30pm. Maria's chances of sleep may be limited given that she had just taken 4mg of steroids and one of the ladies snored (I had first-hand experience). Hopefully the ear plugs I gave her will do the trick.

It is still quite warm this late in the evening. The next few days will be hot again with the chance of some storms to cool things down.

Thanks to those of you keeping Maria and our family in your prayers.

Photos of Maria

A dear friend in Israel who Maria worked for (Ruthie) took some great photos of Maria back in October last year. Maria found them in her drawer today and was shocked to see herself in a different light. The kids both couldn't get over the photos either (how quickly they have forgotten). Gabi wants to take copies to school to show her class.

I love the shots and wanted to share them with you. Thanks Ruthie!

Tue 17-Nov-09 (nerve problems)

While Maria struggles with ongoing numbness and tingling problems predominantly in her left leg, I seem to have picked up a pain issue overnight. It could be my sciatic (pronounced 'sy-attic') nerve. I have been playing "dodge ball" with the kids each afternoon for the past 2-3 days, so perhaps it's related (or just old age). This pain issue started back in Israel some time between Maria's first surgery and our return home. The pain has been on-and-off. In fact, this is the worst it has been since we've been back.

Getting onto more important topics, Maria is still plagued by balance issues and a terribly sore back (all over). She'll receive some massage tomorrow, so we'll see what transpires from that. She may need to get back in contact with the physio who saw her a while ago for unrelated issues.

Mon 16-Nov-09 (first entry in a while - summary of the last week)

For the past week or so I have lacked the energy or motivation to write any entries. In fact, this has also been the case in responding to emails. Anyway, rather than create a number of retrospective entries, I thought I'd give a summary of the week (at least what I can recall).

Sat/Sun 7 & 8-Nov-09

Following on from the previous blog entry, I spent the entire weekend at the Hillsong Men's Conference (link is to the promo for this year) with around 5,000 other guys. I stayed with my brother Mark and his family on the Friday night. I planned to return on Saturday evening, but after the conference I attended a night service, hung out with a few people and ended up sharing a hotel room with a guy I met at the conference (cheers Gary). This allowed me some rest before the drive home on Sunday.

Here are a few photos I took over the weekend.

The worship was awesome and the teaching solid and powerful. I was inspired at a time when I really need it. My challenge now is to move forward with it while I work myself out of a small personal rut.

I arrived home before lunch on Sunday. I missed Maria, Ben and Gabi immensely. It was the longest we had been apart since Maria's diagnosis. There were some challenges for Maria surrounding some behavioural issues (i.e. on the part of the kids). Praise God, everyone was in one piece!

By late afternoon Ben was not himself, complaining of a sore throat and chest when he coughed (same as Gabi's symptoms).

Mon/Tue 9 & 10-Nov-09

Ben was off sick from school on both days. It was diagnosed as just a virus. We are thankful that Maria was unaffected through both Ben and Gabi's illnesses.

Wed 11-Nov-09

Ben returned to school. He has clarinet lessons on Wednesdays at school. He only started 3-4 weeks ago, but seems to be naturally gifted (trying to minimise my bias). He has skipped quite a few pages ahead of his lessons and seems to have no problems reading music. He also seems to have an ear for it as well. I am also quite impressed that he plays with less than frequent squeaks (also appreciated by Maria).

Thu 12-Nov-09

In the evening Maria mentioned that she had increasing problems with her balance and that there was numbness and warmth (she described as stepping on under-floor heating) in her left foot and lower leg. Fortunately there was a doctor's visit already in place for the morning.

Fri 13-Nov-09

It was Maria's third visit to her doctor in a week. On this occasion we addressed her leg/foot issue. In the 'pin' test Maria was unable to really feel anything in her foot and leg up to under the knee. We had some discussion about what may be the cause. At this stage it is a matter of monitoring it while working out some strategies.

Sat 14-Nov-09

We reduced Maria's dexamethasone (steroid) down another half mg to 1.0mg. The further tapering off from here will be slow. It is a huge praise point that at such a low dose she is not experiencing any headaches beyond the 'norm'.

Sun 15-Nov-09

We gathered the strength to do our first church visit since returning to Australia. This will be on our Sunday agenda over the coming weeks/months as we visit a number of congregations to see where we feel the most comfortable (both individually and collectively). One of our interests is what each church offers in the way of their Sunday School ministry. As we discovered from this first visit, our timing isn't great as they were rehearsing for their upcoming Christmas concert. This probably means that we may not get a full feel for a place until some time into next year. That said, now that Maria is somewhat "stable and able" it is the time for us to get out there.Grateful for your prayer over this issue.

Today (Mon 16-Nov-09)

The weather continues to be very hot (36C/97F today), especially when our cooling remains out of order. We are hopeful it is repaired on Friday as planned, as we are expecting hotter temps on Fri and Sat.

Maria has felt a little more unbalanced and some numbness in her other (right) leg. We may be back at the doctor sooner than planned.

Fri 6-Nov (Doctor, Men's Conference)

It 7:15pm and the Hillsong Men's Conference starts in 15mins. I have a seat a few rows from the front. There are a few thousand guys here and the atmosphere is quite awesome.

Earlier today Maria visited her GP. Because of headaches possibly from a nerve problem, she gave Maria an injection into the back of her head. It unfortunately didn't seem to have the desired effect. Gabi has improved bit, which is a blessing.

Better get back inside.

Thu 5-Oct-09 (Doctor's appointment, Gabi to miss athletics carnival))

Gabi stayed home again today and seemed to be getting worse with a terrible cough, fever and ongoing sore throat. As I had an appointment lined up myself to see our GP (family doctor) after work, I was able to use that to get Gabi in. She was running a temp at the time of the visit and feeling miserable. She is now on antibiotics to try and get control of this infection. She is also very keen to ensure none of us are ill while Maria's immunity is suppressed, especially at times like now when she is on chemo.

Gabi will not be well enough for her school athletics carnival. I was hopeful she'd be fit to see how she competed in the sprints. She has told me that although she is unwell, she is happy not to be going. We have continued to encourage her to just have fun, but she has built up this push-pull concern of not beating others while not being beaten either.

The initial reason for the appointment was that a number of blood vessels suddenly appeared on the bridge of my nose the other day, which I wanted investigated together with a number of moles on my body. Fortunately there was nothing of real issue and I only needed to have my nose sprayed with liquid nitrogen.

Tomorrow I head to Sydney for the weekend and should be home on Sunday afternoon at the latest. It will be the longest time away from Maria and the kids since her diagnosis. I'm feeling very strange and uneasy about it. I hope the experience makes it worthwhile.

Prayer points (focus on Maria)

• Against head pain — Maria continues to suffer on and off, which could be related to the small reduction in her dexamethasone dose.
• Against contracting illness — Given that she and Gabi have spent quite a bit of time together at home over the past few days.
• Protection — Having to manage both kids in my absence over the weekend, with the additional challenge of the issues I raised in the first two prayer points.

Wed 4-Nov-09 (Gabi home sick)

Gabi started to become unwell yesterday (a public holiday). She spent most of the night in my bed, keeping me awake for one reason or another. This morning she wasn't well enough to go to school. It looks like a virus that is affecting her throat and chest a little. Hopefully she'll be right for he school athletics carnival on Friday.

I got Ben off to school and struggled through the workday, feeling heavily fatigued. It was another first in that Maria was caring for Gabi in my absence. Fortunately she was very easy to manage, which Maria appreciated greatly.

I got to school in time to collect Ben, but he ended up off with his great mate for a play date.

Most evenings over the last week, the four of us have been involved in some serious singles/teams UNO. Tonight was no exception. We are all really enjoying this time together.

Mon 2-Nov-09 (Oncologist, healing conference, 5th cycle of chemo starts)

The meeting with the Oncologist went smoothly. The only issue we are monitoring is the head pain Maria is experiencing in the mornings and evenings. Should this worsen, then her December MRI would be brought forward.

In the evening Maria went with a dear friend to see Marc Dupont (founder of Mantle of Praise Ministries) who spoke on themes such as Healing. It was a real blessing as Maria was able to pray for others, meet up with another dear friend and for the first time meet a team of people who have been praying for her since early in her journey.

Maria started her 5th cycle of chemotherapy later in the evening after returning from the session.

Amendment to Canberra Hospital document

I think it must have been the late finish the other night/morning that resulted in a number of typos that Maria picked up. I have now fixed the doc and printed a clean version for the hospital. The link mentioned in the previous entry has also been updated to reflect this.