Ed's Daily Progress

A Break in the Journey

It seems our little soldier needs a break in proceedings. With yet another 2 week delay in the next shot of Chemo due to low bloods and late this week he has tested positive to Coronavirus (another common virus usually responsible for a garden variety cold), and a viral Pneumonia. Basically he is at risk of toxicity and complications associated with that. I’ve heard his doctor say this before and have seen first hand on the ward but in a nutshell his Doctor claims to lose about 3 kids a year not to cancer but to complications associated with being too toxic. The patients get one infection too many and their body too weak to fight it, and it seems that this is what is happening to our little guy. The baseline of little Ed on a good day has definitely dropped slowly but surely over the past month. Perhaps it’s just the high doses of pain relief but whatever it is he needs a break from it all.

We’re meeting with the team on Monday to discuss further but the plan at th is stage is to have a 6-8 week total break from IV Chemo and switch him to oral, maintenance Chemo which is much lower doses to keep the disease at bay. It’s hoped that during this time he will have time to recover, wean down from the pain relief and get home for a bit either on gate passes, total discharge or there have been some very preliminary discussions of even a respite stay at Bear Cottage which is located in Manly.

It does feel like the right decision at this stage in the journey and whilst it’s not constructive to carry or live with regret we will never know if it’s the right one until further down the track when the success of his entire treatment plan will be clearer. Either way, one thing is clear our poor little guy needs a break.

He’s actually been having a 2-3 week break between each shot of Chemo (scheduled weekly) so it’s not really a massive difference only it’s an official break, rather than the daily wait for his bloods to bounce back and he will be a low dose of oral Chemo to help keep the disease at bay.

The good news is that his Coronavirus is enough to put him back in a single room on the The Variety Ward, a place where we all tend to feel much more at home and generally speaking the staff warmer, kinder and more attentive.
The first part of the week was not too bad for Ed and he was in pretty good spirits doing some painting, singing and enjoy some special time with Issy whilst she is on holidays.
Wednesday afternoon was a turning point developing some lung inflammation, crackles on the chest and more lethargy and tiredness.
Thursday afternoon marked the move back to the Variety Ward where I think the excitement of returning was all too exciting for the little guy and he was in fantastic spirits by all accounts from Gramps as Issy and I were off having a girls day-surfing and movies.

Apparently Friday morning he was the best he’d been in weeks, back to his usual tricks of roaring at the staff and ruling the roost from his bed but the morning was his climax and as the day wore on the more tired and unwell he became. Our Friday afternoon completed the week with a chest x-ray to confirm Pneumonia. He also became a little too sedated as the early evening wore on so last night they switched off the ketamine to see if that would help with his lethargic state.

His night was fairly peaceful so we’ll see what the weekend brings.

Below is a pic of Ed’s Bravery Bead necklace. I think I’ve mentioned them before, but each bead represents a treatment or procedure in their treatment

Multi tasking- play therapist on one side, nurse taking bloods on the other

School Holiday Fun

Beautiful Issy enjoying some quiet time


Ed's Daily Progress

Moving Forward

Saturday Night Date night again, only earlier this week we were moved down to the Camperdown Ward, a total Oncology Ward rather than the Variety Ward which is an infectious ward where all the rooms are single rooms.  We’re currently in a 2 bed room which makes things just that little bit more busy and tiring, although there are some advantages in sharing a room.  Our social little guy is quite taken with firstly big Alex, and now a little 12 year old girl, Chloe.  Unfortunately (well actually fortunately) for the purposes of a single room he has not tested positive to Rhino Virus or any other infection that would require him to be in isolation in a single room.

We kicked the week off with his scheduled Chemo on Monday and so far he’s been travelling okay if not at times a little up and down.  He’s had the odd temperature triggering some IV antibiotics given over 48 hours to keep away any infections and so far that has been all he’s needed on the infection front.  His pancreas levels have almost returned to normal and his blood count whilst on the decrease due to Chemo is hanging in there quite well.

Overall it’s also been a better week on the pain front, although whilst his pain is better managed he seems a little more whacked out on the pain relief cocktail of hydra-morphine, ketamine and methadone……well I guess you would be.  Sharing is caring I say!!

At this stage he’s looking good for his 3rd (out of 4 for this month) hit of Chemo on Monday so at least thats looking good as we’re moving in the right direction.

In other news, I would like to introduce you to his new Oncology Specialist


Yep, the little brother continues his work experience rotation roster and his now working with the Oncology Team.

Here’s a few pics of happier times this week, including one with his Dr Justyna.
























Ed's Daily Progress

And then there was Methadone!

I realised how surreal this journey is after the 1.5 minute conversation I had with Pete in the hospital car park as we coincidentally crossed paths at 4:15 yesterday afternoon. To the best of my knowledge it went something like this:
” Hi, can’t talk now, will call you once I’m in the car as I need to race to get Isabel from After School care before the traffic builds up. But just quickly how are you feeling (we’ve both had a virus this week), will tell you the pain management plan for the weekend, oh and by the way they’ve started him on Methadone this afternoon, talk in a bit”.

It’s amazing what time and sleep does for your mind and body and I am pleased to say that the taste left our mouths from the experience over the past two weekends has almost been washed away.
Last weekend, whilst he was in hospital with increased pain from worsening Pancreatitis it was incredibly frustrating and heartbreaking to watch as the anaesthetic Doctors who cover the weekend shift on behalf of the Pain Team were very reluctant to make the switch from Morphine to Hydra-Morphine despite pleas from both ourselves, the nurses and his weekend Oncology Doctors to do so.
Despite the introduction to Ketamine on Saturday, as the weekend wore on his pain worsened and there simply was not enough done to address his pain levels. As a result of all of this, it wasnt a great start to this week. Poor little Ed was absolutely exhausted and in an enormous pain. By Monday afternoon when I politely asked to see the Head of the Pain Team so that he could see first hand Edward’s pain the switch was made pretty quickly.
I also had a long discussion with the Pain Team on Friday afternoon  so that there was a clear plan in place should there be a repeat performance from last weekend which included the ability to call our own Rapid Response  should we not be satisfied with the length of time we have to wait to see an anaesthetist or should we not be happy with their decision.

A calm and constructive letter on my behalf, followed by an acknowledgement and planned detail response from both the Governance Unit and the Head of Oncology (also his doctor), more in relation to what had happened the previous weekend, has been somewhat calming and we are able to move forward. I guess the longer you spend in a big system such as this then things are eventually going to happen to frustrate and annoy you as overall I do believe it’s a pretty good system and one that generally works quite well. When liaising with other NPC families in the U.S who are constantly having to fundraise for their child for simple things like medicine and medical equipment I am constantly reminded as to just how lucky we are to be in the Australian medical system despite some if its challenges.

Earlier in the weekend the little guy had a CT Scan under GA to ensure nothing structural had happened to his Pancreas or any further changes to the fatty liver deposits that I have mentioned previously. That all came back clear.

His Pancreas levels have been up and down all week, and accordingly so his pain. Overall his pain is not really well-managed with the neuropathic pain increasing through the week. On Thursday he had some pictures taken for the Annual Report as they profile some of the for fundraising purposes. Despite not being in his best form he put on a brave face and  gave it his best shot.  It was quite beautiful to watch his face light up every time his beautiful sister Issy was mentioned.

He seemed a little better in the second half of the week and even managed to make a cup of tea on Thursday night for his Gramps.


On Friday morning they have started him on Methadone as neuropathic pain can be a side effect of hydra-morphine to see if that helps. This means that my little junkie is currently on Hydra-Morphine, Ketamine, and Methadone. We are all very keen to get his pain levels sorted as we are scheduled to have 11 more doses of this type of Chemo over the next 6 months. He is meant to be receiving IV Chemo once a week for a month, then oral Chemo for a month then and it goes like that 3 times in total. So far we are 3 weeks behind schedule for the first month as he’s only had 1 dose of the scheduled  4 for this month alone so you can only imagine who long and drawn out this 6 month process could become if it continues in the way it started.

At this stage he is scheduled for his second dose for this month on Monday, it’s all very bittersweet. We hope it goes ahead but we brace ourselves for the potential carnage. Who knows, maybe it won’t come. The good news, is that from the oncology perspective on paper he is good and responding well to the Chemo. We just have to put one foot in front of the other and hope for the best.

He’s had a pretty bright day today with visits from his Nanny Sue and Phyllis whilst Issy and I spent the day at the St Kieran’s family fun day and tonight is my date night at the hospital. This afternoon he’s had increased stomach pain and therefore more pain relief along with a temp. Hoping the dust settles and he a has a restful night sleep.

In other news, here is a pic of the beautiful measured and controlled Issy with her spotty cookies we made for the Fun Fair. I must admit it wasn’t exactly what I wanted to be doing with her 6:45 on a Friday night but she was so very proud of them that she initially refused to try even one last night as she wanted to save them for all for the Cake Stall. She was horrified when I took one but after some coaxing was happy to share with me.


Meanwhile the Tornado continues his work experience program at the hospital rotating from Hospital Porter to Bed Maintenance, specialising in Air Bed controls. No job too big for this small guy!!



Ed's Daily Progress

Westmead to Wannabees and Back Again

Sometimes no news is good news, other times its just because it’s all too tiring. The 2 week delay in post is the latter and I’d have to say that I think the last 2 weeks have been perhaps one of the rougher rides on the road to date, mainly because we’ve all been so tired.

There was a change in plan straight after my last post as his Doctors decided to commence his Chemo on the Monday, which is almost a fortnight ago. The idea was to get moving on the Chemo whilst the going good, get him out for a few days whilst he was well and wait for him to bounce back in as his blood levels dropped. A good plan but as we all know our little guy is on his own program.

The days immediately preceding the Chemo were quite good for Ed. For the most part he was bright, bubbly and his pain reasonably well-managed.


We were discharged last Friday afternoon in the hope that we would all have some quality family time together at home. So after almost 10 weeks in hospital with very few gate passes our fun loving little party guy was discharged from Westmead and within 3 hours found himself at the St Kieran’s  Kindergarten Hawaiian disco at Wannabees. For those not familiar it’s one of this crazy indoor play centres which also has some great rooms for kids to play dress ups- http://www.wanna-bees.com.au/aboutus.html
What a place for our first full family outing in a few months.

The weekend at home was difficult to say the least. Aside from the regular medications to be administered


His pain was barely managed and he found it difficult to sleep with the poor little guy waking every few hours through the night. Not only did this effect myself and Pete, but Tom and Isabel were also being woken through the night so that by the end of the weekend Pete and I were wrecked, Tom had a barking cough and Isabel 2 massive cold sores.

On Monday we returned to the clinic for some more Chemo, but unfortunately his bloods were too bad and he required both a full blood and also platelet transfusion. His bloods also indicated he may have some Pancreatitis which would be causing the discomfort in his stomach that he had been complaining about over the weekend.

Throughout the day in clinic his Doctors were deliberating over whether to admit him due to his bloods and pain levels. I also found it a little disheartening to hear from 2 doctors separately from our team that they were surprised to see we had made it through the weekend without a re-admission.

The decision to re-admit him came just after 6:00pm a time I have since learnt when there are no Doctors around to arrange the admission. This meant a trip through the Emergency Department for clerical processing where I’m sure you can imagine my tolerance level at explaining to an Emergency Doctor the little guys complex medical issues starting from whether it was a normal pregnancy, if he was born at term and whether he was a vaginal or delivery or c-section. All of this pales into significance in comparison to the eventful 3 years this little guy has had medically.
Needless to say I have written a letter to the Governance Unit asking them to look at this current policy as it was a pretty ridiculous situation.

As the night in Emergency wore on the little guy was improving and began to fire on all cylinders. At one stage he was so well I was wondering whether we should head home and catch up on some sleep but his temperature was on the way up.

We ran into one of his old Oncology Doctors, Josh Steadson who was now working in ED and still had Ed’s birthday present in his car which he managed to give to Ed on the night.


All in all we spent 6 hours on a Resuscitation Bed whilst I explained the full details of Edward’s complex medical issues. After explaining his NPC combined with his ALL to the admitting Doctor she had a tear in her eye and absolutely astonished at his diagnoses. Whilst I think we all agree it’s astonishing I’m sure you can imagine this was an unnecessary and tiring task at the tail end of a difficult weekend combined with 8 hours in clinic and not really what we needed.

Despite all of this Ed was in full party mode when we made it up to The Clancy Ward ( not our regular Oncology) just after midnight and was pulling all his party tricks with his Medications, PEG etc. If you’ve seen it you’ll know exactly what I mean. His Temperature did hit 38 which meant those hard hours in Emergency were worth it as we would have bounced back through anyway. Despite being in a 4 bed room, with an unattended crying new born baby I did manage to sleep for 6 straight hours, the most sleep I’d had in 3 days. Sweet, kind Ed also found the unattended baby very distressing and asked me many questions about where the baby’s parents, grand parents and friends were.

On Tuesday they found a type of Streptococcus bacteria infection, on Wednesday a Staphylococcus bacteria infection and by Saturday the Pancreatitis that had been simmering away for the week was out in full force with the levels they use to measure this (lipase) 4 times more than they had been earlier in the week. Anybody sensing déjà Vu?

I think I mentioned in a previous post that I was told by one of the Clinical nurse practisers that this block of Chemo is similar to the first block of Chemo. She meant that most kids tolerate fairly well, but in our case it is all starting to look very similar to the first with weeks of severe sickness and pain. There is one Chemo drug, peg asparaginase which does list Pancreatitis as one of the side effects.
He was due for his Chemo tomorrow but I dare say his Pancreatitis will delay this, which will now be by a fortnight.

With the exception of his first bout of Pancreatitis I think Ed’s last 2 nights are up there as possibly the worst he’s ever had- doubled over in crippling pain clutching at his stomach saying “hurting me, it’s hurting me”.
With his pain relief doubled Ed is now having a lazy Sunday catching up on some much needed sleep. Poor Ed but also his poor God mother, Ange and Father who have had a night each with him and are both now desperately trying to catch up on their sleep without the assistance of double morphine or ketamine.

Happy Fathers Day to the very amazing Pete. The guy who despite all that is going on in our family life has finally got his Exercise classes up and running in the last few weeks. Below is the very buff Tom testing out the gear in his Dad’s new exercise Clinic, including a new piece of exercise equipment designed by Mr P Sharp himself.


And a final good bye from the recently returned snow bunny who told me last night that when grows up she’s only going to have 2 children so that it’s easier for everybody when one is in hospital.