Holidays, Birthday and some Good News

I realise I’m well overdue on an update for our little guy as well as bringing you up to date on where the Fundraising has been and is about to take you.


The rollercoaster continues with more up than downs though a few twists in the middle. I must admit up until about 2 weeks ago I’ve found it a bit tough going, but more on that later. To be honest I can’t believe it’s been 2 months since my last post so I’ll take you back to where I last left off in June.


After 10 hours in theatre having his lungs washed, 2 days of being intubated, 7 days post procedure in ICU and 3 more days back on the ward we were finally discharged. He was in fair to pretty good spirits although still requiring oxygen so to be honest I was wondering if the entire ordeal was worth it. Within a few days of being at home he really picked up quickly and despite a number of snotty virus’s, some involving hospital admission he’s managed to stay off his oxygen during the day since then which certainly makes life much easier for all.


By the time his birthday came around on the 6th of July he was in fantastic spirits and those that were able to make it along were lucky enough to see the little guy really holding his own and enjoying the party. I’m not sure where he got that gene from, but it did make this Mum super happy and extremely proud. It was a pretty amazing achievement and a milestone that many did not think he would make.


I’ll let the pics below speak for themselves but I’m not sure he moved from that spot in the lounge room where he entertained and courted those that gathered around.


The following week we managed a super special family holiday away of four fun filled days up at Shoal Bay. I have to say that I think it’s the best time we’ve all spent together in a very, very long time. I don’t think any over of us could believe that it was actually happening and so we all managed to leave our stress, tired, anxious, whining bits at home and just be grateful to be spending such precious together. We even managed to spend a morning together out riding bikes (well the younger 2 boys just hitched a ride on the back) which is the first real family activity like that we have ever done.


Having arrived home feeling relaxed and letting our defenses down the dreaded Flu Bug hit our house big time and it was only a matter of time before it took our boy down the M4 and back to Club WestMed. Isabel was the first to fall and she spent 4 days flat out in bed with fevers and lethargy, Tom and I fell next and there was 2 days when there were 3 of us having our temperatures taken regularly waiting for the next onslaught of panadol to be doled out. All I could hope was that I felt better by the time I had to take him into hospital. Another week in hospital on IV antibiotics was probably the best place for him, well away from the rest of the infectious family. The ironic thing was with the flu injection and Tamii Flu medicine on board he was actually the healthiest member of the family. It was also fortunate that Pete managed to dodge the bug.


Having fully recovered from the Flu and just getting back into the swing of it we had a call from the hospital one Saturday afternoon to say that he had tested positive to an infection in his line. They were happy for him to stay at home but the minute there was a fever we were to bring him straight back to hospital. Sunday morning he wasn’t great so we quickly got out of the house to enjoy some winter sunshine and family time before the temperature hit and it was another Sunday afternoon spent in ED. Another great lesson in living in the moment, not sweating the small stuff and taking nothing for granted.


A further week in hospital on IV antibiotics and off we went again. You can see the pattern emerging, we manage about 10-12 days at home before heading back for 5-7 days and at times it was all getting a little tiring. Fortunately even when he was in hospital he’s been reasonably well and in quite good spirits and dare I say it but it has been a good few weeks since our last visit.


Just over 3 weeks I hit a bit of a wall and was in desperate need of some “me” time which Pete and I arranged. It kick started around 11:00am with a massage followed by a long, relaxing lunch at Hugo’s with a couple of girlfriends and finished with a solo trip to the movies. Almost a perfect day and was exactly what I needed for a little recharge. As I was making the journey home feeling refreshed and rejuvenated I got the call from Pete- “ you need to get home quickly, he’s really sick this time”.


In my head, I thought here we go again, jump in the car, make the journey down the M4 and off we move through ED hopefully fairly quickly. The minute I walked through the door it was different this time. He was vomiting, shivering and shaking as his temperature jumped from 37.6 to 39.6 in less than 10 minutes.


For the first time ever we had to call an ambulance as we were worried he was about to either turn septic given the quick temperature rise and sudden onset of illness or have a fit, which is on the long list of NPC symptoms we are yet to experience. He’d also as he’d been in pretty good spirits when Pete put him to bed so the sudden change was quite alarming.


2 ambulance officers arrived along with a Pediatric Ambulance Doctor and off we proceeded rather quickly under lights and sirens. We were hoping to travel directly to Club WestMed but as he was deteriorating so fast it was decided that we would need to stop at Royal North Shore to stabilise him. 2 Ambulance rides later, 16 hours in 2 Emergency Departments and just 3 days in hospital on IV antibiotics we have never found the cause of this sudden episode.


Not long after we arrived at Royal North Shore and as soon as his temperature came down and fluids on board he stabilized very quickly and seemed quite well. In just 4 eventful hours he had one the hearts of the ambo’s, Dr’s and nurses he had met that evening. 2 of the nurses especially took a shine to him because as the Doctors were inserting a cannula into his arm (not normally done to him at Club WestMed due to his double lumen Central Line) he said “ I don’t need a Doctor, just the nurse”……you can only imagine the smile that brought to all those attending to him in the Resuscitation Bay.


One of the Doctors had actually remembered him from our visit to ED in January 2013 in the week prior to his ALL Diagnosis and admitted that based on his initial blood results taken that on that day he suspected he had some sort of blood disease.


The episode that evening had reminded me of the night sweats he had been having just prior to being diagnosed with his ALL. Obviously we didn’t have the concern that he was turning septic, as he didn’t have a Central Line inserted.


So with a Bone Marrow aspirate to check his Leukemia levels booked for a few weeks down the track the procedure couldn’t have come soon enough. About a fortnight ago we spent a scheduled overnight having sleep study, followed the next day by the Aspirate and CT scan of his lungs.


Earlier this week we received some good news. The CT scan depict a big improvement in his lungs after the full lung lavage back in June. In addition to this there were no Leukemia cells depicted in his blood. This will enable him to continue on oral maintenance Chemotherapy in the hope it will continue to stay away. If they had depicted some Leukemia Cells he would have required more intensive IV Chemotherapy treatment and possibly a Bone Marrow transplant, something that he probably wouldn’t survive.


In terms of the lungs it also suggests that if and when necessary they will consider continuing on with the full lavages intermittently as a form of therapy since it gives him a better quality of life off the oxygen. They were also quite pleased that despite the runny and snotty noses shared by the not so little brother and the bad cough our little guys has that he remains in good spirits and more importantly out of hospital, so it can only be good on that front.

If anything his blood results are improving and so they have had to increase his Chemotherapy doses as there is a certain level that they like to keep their bloods at to ensure the Chemotherapy continues to kill off any Leukemia cells.


It’s been a bit of a challenge adjusting to longer stretches at home on many levels and as I’ve mentioned I hit a wall about 3 or 4 weeks ago but I really think I’m working through that at the moment removing some of the blockages and moving through some of things I want to be working on including getting moving on the Fundraising front with some very exciting months ahead.



At the moment I’m feeling lighter and have found a little more time for me. We have the lovely Jannine who is our neighbor and also a qualified career that looks after him for 3 hours on a Tuesday and Thursday. And today was a very special occasion on so many levels as he’s gone back to his beautiful Family Day Care lady, Amparo along with Tom for a couple of hours this morning which is another activity I never thought would happen again.


This Saturday night he’s booked in for one night respite at Bear Cottage so that Pete and I can have a totally childfree night in the city. I’m not brave enough to book anywhere to stay until I’ve farmed Tom and Issy to Ange and Ben’s and I know that Ed is tucked up safely in Bear Cottage because as we all know 3 days is a long time when you’re Ed and anything can happen.


In the next day or so I’ll post a long overdue Fundraising up date, A Fundraising Hall of Fame along with a call for donations for the Silent Auction at the Family Fun Day on the 26th of October.



In other news, Issy was taken to the snow by her aunty, Grandma and Gramps and Tom has officially entered the terrible two………and don’t we know it, all I can so it’s lucky he’s so cute and very charming!.

In the meantime, enjoy the pics from the last few months.

 The 4th Birthday Celebrations


photo 4[2]

photo 5[2]

photo 3[2]


The 2nd Birthday (you can tell he’s the 3rd Child)…at least there was cake

photo 2

photo 3

photo 4


Brothers in Arms

photo 5[1]

photo 2[3]

photo 1

Happy Days- hours before another Sunday Arvo in ED

photo 3[1]

photo 2[1]

Randoms to Enjoy

photo 2

photo 1[2] photo 1[1] photo 1 photo 5 photo 4[1] photo 4 photo 3


5 thoughts on “Holidays, Birthday and some Good News

  1. Hi Ali, thanks for the detailed update. We’re glad there are some good bits of news in the midst of the many challenges that you’ve had over the last 2 months. It’s great to hear of the lung improvements and the return to oral chemo. Also great to hear about your magic 4 days at Shoal bay. Love to you all, Trevor & Carmen

  2. AliYou are an amazingly incredulous writer …and a wonderful daughter,mother,wife,organiser ….fantastic update -thank you-love youMumxxCan we help on Sunday by collecting Edward from Bear Cottage? Let us know what we can do to helpMargaretM: +61 (0)409 625 663E:

  3. Thanks for the update , you are so strong and such troopers, I don’t know how you don’t crash and burn more often. I sit here with bleeding feet split from raynauds and my pain doesn’t even compare to Eds. He really is a blessing , we will continue our prayers as always, love to all. angel and gods love , strength , hugs , take care xo Wendy and Phil Lankford

  4. My little just turned 2. So thrilled that you are spending more time at home, even though it is an adjustment. We all need “me” time, so put it on the schedule once a month.

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