Mon 27-Jul-09 (Uncle Vic's funeral)

Today was Uncle Vic's funeral in Sydney. It was the longest I had been away from Maria (both in terms of time and distance) since the onset of her illness in February.

I woke at 5am and saw that Maria's bedroom light was on. I checked and found her awake, still experiencing periods of insomnia. She is taking it in her stride to keep sane!

I left around 5:30am and drove to Sydney, arriving at the church just after 9:00am. It was obviously a sad occasion. It was an opportunity to celebrate his life and see a lot of family from my mum's side, who I either see intermittently or haven't seen for many years. It was nice to catch up but unfortunate that it seems to be at these types of events.

After the church service, burial, and spending some time at Aunty Margaret's, I left around 3:30pm to try and beat the major peak traffic heading out of Sydney. I arrived home just after 7:00pm, taking about the same time as the trip up this morning. It has been quite a while since I've driven 7+ hours in a day.

When I arrived home, Gabi virtually crash-tackled me for a hug before I got out of the car. They had all waited patiently for me so we could have dinner together. The kids went to bed immediately after dinner, giving us a chance to chat about our days before fatigue for both of us set in. Maria was able to be driven to a morning tea for 'new' parents (for Gabi) by a dear friend and spend some time at home with her afterwards. Maria's parents also came through while travelling from Goulburn back to their home on the South Coast. It was Maria's father's 'name day' today — χρόνια πολλά μπαμπάς (pronounced "Hronia polla Babas"), which translates to "Happy name day Baba (Dad)".

What does tomorrow hold? As I may not have the energy to prepare an entry, I'll cover off on what I can recall in advance:

• Ben has an excursion to the National Museum of Australia tomorrow to participate in a program called 'Tools of the Land" in which they'll learn about traditional Indigenous (Aboriginal) lifestyles.


• Maria has a physio appointment for her back, which she injured while vomiting the other week (too much info??).


• The respite cleaner will be to provide her weekly assistance (two hours).

Fri 24-Jul-09 (retun to school, Gabi's excursion)

The kids returned to school yesterday (Thursday) after 2 1/2 weeks of holidays. They seemed to enjoy their first day back.

Their last day of holidays (Wednesday) involved some time at Weston Park, including a train ride, before the weather turned sour. On the way out the kids got to see a whole mob of kangaroos just sitting around in the park.

Today Gabi had her first excursion with school, going to the (NASA) Canberra Deep Space Communication Complex at Tidbinbilla as they are studying "Space'. Their visit coincided with the week marking the 40th anniversary of the first moon landing. Interestingly this complex and two other Australian facilities played a significant support role in the moon landing project. To try and summarise it (see website for more info), Australian facilities across the country provided a communication link to the astronauts and for the television coverage. Apparently the first images of the moon landing that came through to Goldstone, California were upsidedown and poor contrast because of an incorrect switch setting and poor ground-links.

"With moments to spare before Armstrong was on the surface, NASA looked to the Parkes Radio Telescope, Tidbinbilla and the Honeysuckle Creek tracking stations. Parkes didn't have a strong signal at the time due to the low position of the Moon above their horizon. Tidbinbilla was supporting the Command Module. Honeysuckle Creek was prime on the Lunar Module with the astronauts on the surface. They had a TV image and this was being transmitted through ABC studios in Sydney to TVs around Australia. NASA saw the feed coming through Honeysuckle and switched over for the international broadcast to their picture - meanwhile the sound for the international broadcast was still coming through Goldstone.

The first 8 minutes of the broadcast including Armstrong's first steps on the Moon were seen through the transmissions received at Honeysuckle Creek. Once the Moon was higher in their sky, the TV picture at Parkes' larger dish were then relayed over to Houston and the remaining 2 hours of the Moonwalk were seen through that antenna.

The Parkes radio telescope remains active today and is highly regarded as one of the world's best radio telescopes. The Honeysuckle Creek station was closed in 1981, and its antenna moved to Tidbinbilla where it continues to provide communication support to dozens of robotic spacecraft exploring the Solar System." (http://www.cdscc.nasa.gov/Pages/pg05_events.html)

Wed 22-Jul-09 (Maria's struggle with sleep and fatigue)

Today is the last day of the kids' school holidays. We have had a reasonably quiet time off, especially as the kids are exhausted from having already done a full school year (their friends in Israel are now on the end of school year two months' break). With a few months of school to go for Ben and Gabi, this break was very timely.

It is a little strange to think that had Maria been well, this is the time we would have been in Australia for our "mid-term" leave break.

In recent days Maria has started to struggle with insomnia, very similar to that she experienced in Israel. It is hard to know the cause(s). Unfortunately her fatigue causes her to nap during the day, which may be creating a cycle of night sleeplessness. Maria intentionally stayed awake all day today and we put the kids into bed at 7pm with the hope of getting through to her normal bed time to see whether this would help her. Unfortunately we both fell asleep while chatting on the bed. I awoke to the 9pm medication alarm. After that we were both wide awake. I left her about 9:30pm.

It is nearly midnight now and I have been busy praying for my family with the loss of Uncle Vic (see previous entry) as well as writing a business case to work on accessing a further period of carer's leave. I hope Maria is well as truly out of it by now.

Uncle Vic's passing

Further to my blog entry the other day regarding Uncle Vic, I since learned he had been placed on life support after his heart attack, which was switched off late this afternoon. He died around 8:00pm this evening (22 July).


Please keep my Aunty Margaret, cousins Anthony and Robert, and their wider family in your prayers.

Mon 20-Jul-09 (kids day out)

Maria has lately struggled with stretches of wakefulness throughout the night. Last night was no exception.

Janelle and Dom collected Ben and Gabi this morning and headed to the War Memorial for the 'dress-ups' area and to have a look around.

Afterwards they had fun at the 'fort' in the park. This gave me a chance to empty most of the remaining boxes. Although most are empty, this does not mean that we are unpacked as it is currently a matter of just getting things onto shelves temporarily to clear the boxes. Maria made morning tea and even had her first go on my recently acquired coffee machine—the sound of it puts her off.

We all lunched together. The kids played on while Maria had a nap. During this time Janelle prepared a delicious roast and we had a chance to chat a little.

My mum SMS'd to say that my Uncle Vic had suffered a heart attack and had been placed in a drug-induced coma. Please keep him, Aunty Margaret and their sons Anthony and Robert in your prayers at this time.

Tomorrow Maria has a medical appointment so we can re-stock on medication as we are no longer in the hospital system. Janelle will take Maria and I'll look after the kids as we are having a respite service provided a cleaner for a couple of hours a week over the next few weeks. This will be her first visit.

Sat 18-Jul-09 (Maria completes 1st chemo cycle)

For anyone out there still following the blog, Maria finished her first cycle of chemo in Australia! Apart from feeling a little nauseas on the morning after her first dose (which could have also been attributed to an increase in her antibiotics), the rest of the week was fine. She has struggled with fatigue more than anything this week.

The kids have been enjoying their holidays. They're taking advantage of the shipping boxes that I have been slowly emptying. They have turned them into anything from an aircraft to a home, putting their imaginations to great effect. Gabi has enjoyed dressing up for the occasion, getting around in an old pair of high heels. Ben and Gabi have played beautifully together for lengthy periods, which has been a little surprising at times.

This afternoon Janelle and her son Dominic arrived in Canberra. They came over for a visit and will be around over the next few days (staying with other friends), so we plan to try and do a few things together. Ben, Gabi and Dom enjoyed each other's company today.

This evening the kids made dessert. Ben got very serious with his creations, even creatively decorating with the strawberries.

Mon 13-Jul-09 (Maria "discharged", visit)

The morning commenced with the four of us heading into the hospital to meet the IDC team to discuss Maria's ongoing antibiotic treatment. We waited around for well over two hours. The kids were amazingly patient. Gabi thrashed me again at 'Uno'.

When the Registrar finally came, there appeared to be an internal mis-communication. A few minutes later the Professor turned up. It was decided that Maria could come off the IV antibiotics and one of her oral antibiotic (Ciprofloxacin) doses would be increased.

Gabi and I watched the nurse remove the line. As you can see from the photo, Maria didn't feel it at all, which is amazing as you can see it has some length to it. Ben couldn't watch the action, but he was interested in having a "sticky beak" (look) afterwards to see whether there was blood on the line. Upon examination there was very little.

Maria tried on a mask, should she need one in the future to avoid illness while on chemo. The kids and I (even the nurses) agreed it made her look like a duck!

We headed home for lunch. We also received a call from our dear friend, Elizabeth, who had arrived in Canberra with her daughter and would be visiting us later in the afternoon.

Elizabeth, her daughter, and a friend came over for afternoon tea. It was great to see Elizabeth, yet a bit strange having last seen her in Israel. The two girls had to shoot off so I took Elizabeth back to their friends' apartment later. When Elizabeth returns to Israel, she'll only be there for a further six days before returning to the US indefinitely.

Maria took her first dose of chemo for this cycle (as you can see). Although she is now on a virtual double dose (290mg/day) compared with her first regimen in Israel (150mg) because that was administered concomitantly with radiotherapy, she is taking a small number of tablets (3 compared with 5 last time). Here's praying for some positive effect, yet no/minimal side effects.

Sun 12-Jul-09 (movies and week ahead)

I haven't prepared an entry since Thursday as things have been relatively quiet and we have been lazing around the house. I'm also suffering from a little exhaustion. I have to say that part of my fatigue is self-inflicted, staying up late to watch the Ashes (i.e. cricket series against England).

We took the kids to see Ice Age 3 today. They enjoyed it and Maria made it through the whole movie (much of it wearing ear plugs).

Tomorrow we meet with the Infectious Diseases Control team again to discuss Maria's antibiotics and ongoing treatment of her brain abscess.

We are expecting a visit from a dear friend, Elizabeth, who is over from the US, via Israel) to see her daughter. We are looking forward to seeing her.

Maria will commence chemotherapy on Monday evening, which is a little tricky (as already mentioned) because the chemo may drop her immunity to fight infection, yet the neuro-oncologist doesn't want to delay this cycle of treatment. We trust his judgement, having already handed this situation over to God.

Tuesday will be a busy day with our goods from Israel being delivered. I am going to try and get Maria and the kids out to someone's home for the day, allowing me work with the removalists. Otherwise the week should be eventless.

I think that my updates will slow a little, unless there is anything of interest to share.

Thu 9-Jul-09 (Maria's finally home)

What a long day! Gabi decided to come into my bed to complain about feeling itchy. The only problem was that it was 2:00am, and only an hour after I'd gone to bed. We were both a little slow out of the blocks getting to Scoot.

After dropping off the kids, I had to visit the office to deliver some paperwork. I bumped into my predecessor from Tel Aviv. As he is on leave, we were able to have a good chat.

I got into the hospital around 10:30am. Maria had already met with the IDC team and it sounded like they would remove her line and send her home. As mentioned yesterday, the blood cultures were taking some time to grow and there was still no result outcome.

Maria also mentioned that her Neurosurgeon had caught up with her and was happy with the CT scan from his perspective. His summary was that there was no apparent change in this CT compared against the post-op CT. In effect this means that the tumour has done little/nothing in the 3 1/2 weeks since surgery. Praise God!

We sat around, went to the cafe, played cards, chatted, dozed and waited...and waited...and waited. Eventually I headed to a nearby shopping centre/mall to do a little shopping. As I was about to head off to collect the kids from their respective play-dates, Maria called to say they would be proceeding with her release "shortly". At this stage it was just after 3:30pm.

Anyway, at 5:00pm we finally left after a HITH (Hospital in the Home) nurse hooked Maria back up to her regular IV antibiotic. The PIC line remains in for now. The only change in her medication is that one of the oral antibiotics (Metronidazole aka 'Flagyl') has been removed. Maria said to the nurse that it would have been strange had IDC removed her PIC line because that would have meant she was officially discharged and therefore no longer in need of HITH visiting us at home.

We have been asked to go in on Monday morning to meet the IDC Head to review Maria's situation, particularly the duration of IV antibiotics. Hopefully we'll have the blood results by then also!

The kids had a ball at their play-dates. Tomorrow is their last day at Scoot. It appears they have enjoyed it so far.

Wed 8-Jul-09 (Maria still in hospital)

I received a call from Maria first thing this morning. She told me that she had a bad night with some vomiting and rigors. After packing a few things in anticipation of a longer stay I headed into the hospital. I called the kids, who were having a ball with their friends.

Upon arrival on the floor, Maria was being wheeled to X-ray for a chest x-ray. She was otherwise quite well (this continued throughout the day). We waited around for the IDC team to come through to discuss any infection issues. After a lengthy wait we decided to head to the cafe for a break. Just as we were on our way back up, the nurse called me to say the team had arrived. The summary of that conversation was:

• Basically nothing could be found from the CT or chest x-ray that raised any particular concern. However, the bloods would take a little while to culture and this may solve the mystery.
• Maria may be suffering a reaction to one of the oral antibiotics, which they intend to remove. She was very happy as she finds it terrible to ingest.
• The PIC line could be introducing infection. If this is the case, they will remove it.
• Further to the previous point, they may introduce another antibiotic intravenously (Vancomycin Hydrochloride). This is used for the treatment of potentially life threatening infections that cannot be treated with another, less toxic antibiotic. Maria received this after surgery, which may have helped, but appeared to be the cause of all the problems she had with her veins, making the insertion of canulas almost impossible. They are therefore not sure how they will manage this. Perhaps another PIC line, but in the other arm?
• Because Maria has a bout of rigors earlier that morning and the bloods taking a while to culture, they decided she should stay in for another day. I'm feeling déjà vu coming on!

Our brother-in-law Brian was in the hospital for the day at a workshop. He visited Maria before he and I had lunch together.

After spending some further time with Maria, I collected the kids (a huge thanks to Gill) and re-introduced myself to them. We collected McDonalds for a special dinner to take to the hospital to have with mummy. It was also to celebrate their end of term reports. They both did very well. In fact (a turn of the tables) Ben's report was outstanding! They put cheese on my burger, so Maria ended up enjoying two burgers and I had (not enjoyed) her hospital meal.

The kids crashed out pretty soon after we arrived home. This has given me more time to get my final loads of washing and basic cleaning done as well as take a few minutes out to punch out this update.

Here's praying for Maria's return home tomorrow. The only blessing in her being in hospital tomorrow is that we have some appointments there anyway.

Tue 7-Jul-09 (Maria hospitalised)

Last night I collapsed into bed at 8:30pm after being up most of Sunday night watching tennis. I even missed a call an hour later even though it was on my bedside table.

Unfortunately the timing of my deep wasn't great. About 7:15am I went to check on Maria to find her unwell. She said that she woke around 5am and vomited. She called out, but as I am in a different room (and no doubt in that "deep sleep"), I didn't hear her. Unfortunately while sick she coughed and put her back out as well. As we knew the nurse would be arriving in a little while we decided to go ahead with the routine of me taking the kids to 'Scoot' as I'd only be out of the house for about 30mins and she was confident of looking after herself for that period.

When I returned our favourite nurse was already there. She made a call to the hospital and spoke with the neurosurgical registrar. It was decided I'd monitor Maria and should there be any change or additional vomiting, we'd contact the hospital for further advice. As Maria had come off her dexamethasone (steroids) completely the day before (she was only on 1mg before ceasing) I felt one possibility was another case of withdrawal, which is what she had experienced post-surgery.

Maria had a short (pre-arranged) visit from our dear friend Sue who arrived as we were farewelling the nurse. Afterwards Maria went off to sleep.

I collected the kids and after returning let Maria sleep a little longer. I checked on her around 2pm as she was due some meds and found her very tired and with significant head pain. When I helped her up, she commenced having rigors. At this time I received a call from the nurse saying she had followed up with the neuro-oncologist who was keen for her to come in if I was concerned for Maria. The timing of her call was impeccible. We got moving and arrived at the hospital within half an hour of that call.

After some assessment, it was decided that Maria would have a CT brain scan and blood/urine/etc. cultures. In the meantime I was able to get through to another dear friend who came and collected the kids from the hospital. That's where they now are, having their first sleepover since returning to Oz. They are excited but obviously concerned that their mummy is hospitalised again.

Maria was given 2mg of dexamethasone around 4:30m. By the time I left, she seemed a whole lot better. Before I left we bumped into one of the neurosurgical registrars, who said Maria looked great and he felt it may be steroid withdrawal also. Obviously we can't still rule out infection issues yet.

The feedback we received before I headed home was that: (a) the neurosurgical team was happy with the CT from their perspective; (b) the Infectious Disease Control (IDC) team wanted Maria to undergo a chest x-ray later in the evening; (c) another antibiotic would be introduced temporarily until they resolved the issue; and (d) IDC wanted her to stay in so they could assess all scans and cultures in the morning.

Hopefully even if it is infection, she can come home and they can introduce another antibiotic through her line. Maria is very frustrated to be back in hospital (same Acute Care Unit room) as she believes she is too well (and bored) to be occupying a bed. She also knows the night ahead means constant observations, which will break-up whatever sleep she is able to get.

Prayer points

• Reasonable rest for Maria.
• Resolution of the issue tomorrow and a return home.
• Peace for the kids.
• Maria's PIC line has a kink in it, which has been blistering her skin. The nurses are doing an admirable job trying to move it to another spot on the skin and avoiding any other infection. However, it is also challenging as you can only move it sideways so far because it is running through a small hole into a large vein.
• Effectiveness and minimal side effects from the chemotherapy, when it commences (could now be as early as Thursday). This is a little tricky as the oncologist is balancing the risk of her immuno-suppression against the need to actively fighting this aggressive tumour as quickly as possible.
• Some respite for the four of us. There seems to have been something each week since returning that has challenged us and kept us from doing family stuff.

Mon 6-Jul-09 (Hospital and Scoot)

The kids spent their first day at 'Scoot', a kids program run at one of the churches in Canberra. They both seemed to have had a lot of fun and were well and truly exhausted by bedtime.

After 'Scoot' the kids went home with a dear friend (thanks Mel), which worked really well as we were at the hospital for the neuro-oncologist's appointment and spent some time in the HITH office (which was manic). Unfortunately when I went through the bag of many meds I collected, I missed one, which meant another trip for me little later that afternoon.

Chemotherapy (which was put off due to Maria's surgery) will commence on Monday evening. Grateful prayers over that.

What I didn't mention

What I forgot to mention was that yesterday (Saturday) we had a visit from my brother Mark, his wife Cass and our very cute nephews, Magnus and Luka. It was the first time we had seen them in two years and the first time we got to meet Luka. The kids all got on really well and had fun playing together.

I thought I should add a couple of photos.

Sun 5-Jul-09 (general update)

It's actually after 1:00am on Monday but thought I'd take a few minutes while watching the Wimbeldon Men's Final to give a brief update as I haven't written since Wednesday. This is probably because we haven't been up to much apart from trying to relax and have quality time and fun with the kids.

Ben and Gabi are now on three weeks holidays. They will spend this next week going to a kids' church program (3hrs each day) at which a number of their friends will also be attending.

Maria suffers head pain usually in the morning and evening (with a little throughout the day), but her current medication keeps it well under control. Otherwise she is quite active—perhaps too much at times—which over the last couple of afternoons has caused her to feel exhausted and in need of a good rest. This is not concerning when you consider her level of activity (again, comparing it with how she fared after the last surgery) and that she is still recovering from this surgery.

We see the neuro-oncologist later this morning (10am) so we'll find out the specifics about Maria's next round of chemotherapy, which may start as soon as next week.

I'll sign off with Roger (Federer) having just taked the third set in a close tie-break. Here's praying that he can become the first male tennis player to win 15 Grand Slams to cement his place as "Tennis' best ever".

Wed 1-Jul-09 (suture removal)

I'm going to keep this brief as I can barely stay awake and am not sure if it is the onset of illness or exhaustion, but wanted to put something up as I know a lot of you had covered Maria in prayer today.

We got into the hospital just before 10am. One of the nurses who has been visiting Maria at home, and was supposed to be on a day off was working today because they are short-staffed. This was the first blessing as both she and Maria have developed a great rapport and she is highly professional at her job. She and I noticed a lump on Maria's head just below where the titanium plate was inserted. This was a result of an accidental head-clash she had with Gabi in the morning just before school.

After the nurse organised the neurosurgical registrar and infectious disease control (IDC) dept doctors to see Maria, she removed the sutures without any incident. A real answer to prayer. Thanks to those out there who held her up at this time.

The neurosurgical registrar was happy with the healing of Maria's wound and overall condition. We have now dropped from 2mg to 1mg of dexamethasone, with the aim to cease it completely in 5 days time. At this same stage after the initial surgery, Maria was somewhere around the 24mg mark!

IDC doctors are still to commit to the duration of Maria's intravenous antibiotics, but it may be around six weeks in total, followed by oral antibiotics for an indefinite period. The registrar that saw us will meet with the dept 'head' so there will be more for us to discuss at Maria's next review on Thursday week (9th). The good news is that the results of a blood test taken yesterday show that in terms of infection indicators her 'levels' are in the normal range, which may suggest a positive response to the antibiotics.

We have a meeting with the neuro-oncologist on Monday, at which we'll be able to discuss a range of issues, including Maria's treatment regimen (e.g. next round of chemo).

One last look before the sutures come out

Maria's head sutures will be removed in a few hours time (planned for 10am on 1-Jul), providing the neurosurgery registrar is happy with her healing. That said, the nurses visiting each day believe the wound is healing well. Maria has been happy to walk around without any head covering (apart from when it has been far too cold to do so) and show them to whoever is willing and able to stomach it. As you can see, it's not really that bad.

For those of you familiar with the first surgery, you'll notice there is an additional incision coming out onto the forehead. That said, as you can see from the subsequent shots, the neurosurgeon didn't come all the way down on the left and didn't have to make any incision on the right. The original scar is fading somewhat. Unfortunately there is no real hair growth in the areas that were irradiated. As mentioned before, there may be future growth, but there may not.

Maria has never sought to wear a wig and it has been helpful for Ben and Gabi's peers to see Maria "as she is" on the few occasions she has been able to visit the school.

Here's praying that the suture removal will be a little less stressful than when Effie did it after the first surgery!