Ed's Daily Progress

A New Round of Chemo, a new hat and a new PM

Well what an eventful few weeks its been since I last posted. The little guy celebrated his next round of Chemo with a new PM and a new hat. Belinda, our Ranga hating, Rana lovin’ nurse is beside herself with joy knowing that the new PM is considering bringing forward the election date so that National (To)Rana Day may have election free festivities. And for those doubting that such a day exists or requiring more information – check it out: http://www.toranafest.com.au/

Fortunately this is not a political blog but rather about our beautiful little guy who has carefully selected a new hat for his new round of Chemo. I’m sure you’ll agree that this guy would make a much better PM. image

We had a fantastic 2 weeks at home with Edward where he continued to hold court and order his underlings, I mean siblings and parentals around. Needing, wanting and now were amongst his top 3 words of the fortnight. There were several day visits to the clinic sprinkled through the week but we did have sometime to catch up on the odd film, sort out boring old domestic necessities and enjoy some much needed family time.

The round kicked off on Thursday morning with a Lumbar Puncture. He was then allowed to return home for a few hours in the afternoon where he managed to squeeze in a quick celebratory end of Term drink with Isabel and a couple of her school friends before heading back to hospital in the evening with his Grandma.


I’m hoping what he’s holding in his hand is in focus enough for you to see and have a laugh but blurry enough should we have a visit from DOCS and his liver Doctors.

The past 2 days have seen some pretty intense Chemo drugs and the effects already starting to show. This is much sooner than the last round which was exactly the same cocktail but he’s quite unsettled and fairly miserable at the moment. Yesterday afternoon the bouts of pain intensified and the early evening pretty roughly. Once we managed to get the pain under control he had a fairly peaceful evening.
I sense that this next round is going to be a little tougher for the guy than the last.

In the meantime I’ll keep you posted with updates of National Rana Day and any other new hats the little fashionista may acquire.

Ed's Daily Progress

Recharge, Rejuvenate and almost Ready to Go Again

After our long weekend all inclusive package at Club WestMed, Little Ed spent his standard 7 days  in hospital on antibiotics for a relatively minor  Strep Infection.  His blood counts were low so there were lots of platelet and full blood transfusions to assist his recovery. By Day 3 or 4 he was able to come out for a few hours in the afternoon before returning in the evening for his IV antibiotics. He was discharged last Saturday and has spent the passed 6 days getting stronger, louder and ordering everybody about.  It’s exhausting for us all and he almost feels like a regular 2 year old toddler which whilst tiring is really great to see.

There were 2 clinic visits this week and 2 scheduled for next week.  Next Thursday, 27th of June he’ll have a Lumbar Puncture to measure the effectiveness of the last round of  Chemo and providing there are beds available he’ll be admitted then for 6 full days of Chemo in hospital. It’s exactly the same chemical cocktail as last round so hopefully he’ll handle them as well as he did this time.  He’ll then have another 3 week break to mop the carnage, treat any infections and  blood transfusions available to assist his recovery and bring his blood counts back up. At this stage there is  one more round of exactly the same protocol as I’ve just described.

These 3 rounds in total will be completed in about 8 weeks time which will be mid August and we hope to have a clearer picture of the effectiveness of this block of Chemo and whether we’ll be heading down the path of a Bone Marrow Transplant.

Ed's Daily Progress

A Smoother Than Expected Ride

It’s now 7 days since the completion of his last round of Chemo and the point when he is expected to be at his lowest. Whilst his bloods are expectedly low he’s in reasonable spirits all things considered.

Surprisingly we were discharged on last Tuesday and managed to spend a couple days at home catching up on washing, cooking cleaning, shopping, personal grooming etc. Ed and I even managed a trip to see The Great Gatsby in between outpatient hospital clinics. We were warned at the start of this round that there was a fairly good chance he wouldn’t be discharged if he was too toxic or unwell so those 3 days at home were a real bonus.
On Friday we spent most of day at the clinic having had check ups and an infusion. By 3:00pm he felt warm at 37.5 but not the magic number of 38 degrees. I waited half an hour redid his temperature and it was still 37.5. By the time I’d driven back to Manly, fast shop at the supermarket, had a quick drink at a friend’s house who’d been looking after Issy it was 7:30, traffic had cleared and Ed’s temperature raging well above 38 degrees.

So as we had expected we checked into Club WestMed for the long weekend deluxe package. This began with an all nighter in the single presidential suite in ED as there were no beds on either of the Oncology Wards. The place was heaving!!!

His bloods grew an infection (at this stage not sure which one) so he’ll definitely be here until this Friday which will complete 7 days of IV antibiotics. Yesterday he was in reasonable spirits although a little tired and managed to get out for a few hours in the afternoon to meet the rest of us at Luna Park. We’re hoping to do the same today.

Here’s hopinghis bloods improve from here, his energy levels on the up and the infections kept at bay.