Exit Variety Ward, Hello Camperdown Ward

Today Ed was moved from Suite 7 on the Variety Ward which is an isolation ward to Suite 4 on the Camperdown Ward, the main Oncology Ward.  As I’ve said before, prior to his ALL diagnosis this is definitely one ward on the hospital that I never thought we would spend time on.

Always understanding the importance of a memorable lasting impression and fantastic first impression- this is what he chose to wear whilst being transported.

 

Need I say more…….forever the show man!!  Was definitely incognito  and managed to dodge most of the paparazzi.

He may not be here for a long time but he’s certainly here for a good time.

 

A CT under GA and he’s Fixed

…..well at least the smile, along with his appetite and cheeky little ways. It’s unbelievable how quickly this little guy crashed and has come back bigger and better- all in 24 hours.
When I left Ed for his CT scan and Bronchoscopy (both under General Anaseathetic) they told me that we’ll more than likely see in you in ICU after this as he’s probably going to get pretty knocked around.. I think the little guy was determined not to lose our booking in Suite 7 as when he came around he was demanding icy poles, off all of his oxygen and full of beans.
Upon returning to the suite King Edward held court from his bed eating dinner, easter eggs and sharing his Easter stash with the nurses who had been on all day and were absolutely blown away by a) that we had returned and b) in unbelievably high spirits.

I’m sure the full blood transfusion and platelets just prior to the scan may have something to do with this fast recovery and pick up as the doctors think it is likely he has Pneumo cystis pneumonia. This will not be confirmed for a few days until the sample grows in the lab and the results are returned but in the meantime they will treat with IV antibiotics and wait for confirmation of this diagnosis.

Australian Reptile Park to ICU

Up until last night we have spent the passed 4 days preparing to be discharged in time for the Anzac Day march on Thursday. It was really just a matter of getting him off the continuous feeds that we’re being regulated by a pump and back onto regular feeds.

Initially I was a little daunted by the concept of his return home not only due to the increased work load for me but also knowing that we need to be alert and ready to return back to the hospital at any time. This means that both Tom and Isabel need a Plan B of where they can go 24hrs, 7 days. We had the systems in place and with the amazing help from family and friends it was all working and ticking along. Needless to say I’m working on some new plans and schedules for when the little guy does return home and not feeling so overwhelmed by his return. However, at this stage it’s not looking like anytime soon.

Edward’s spirits have been high, he was happy and enjoying his day passes home and visits to friends and grandparents. Yesterday Ed and I even managed a few hours at The Australian Reptile Park where Isabel and Pete were enjoying the day which was organised by Camp Quality.

Last night things turned rather quickly and he was on about 15 litres if oxygen ( which is a massive amount), triggered 2 rapid responses and had 2 chest x-rays overnight.

We’re just waiting at the moment to go down to theatre to have a CT scan and bronchoscope (camera inserted to examine lungs) to see what is causing these breathing problems. The x- rays revealed some minor changes from his previous ones suggesting there may be some fungus caused by a virus on his lungs. They need to know what sort of fungus, if any is causing these problems so that they can treat it with the correct antibiotics. Due to the chemotherapy his blood counts are still low and continuing to fall so the poor little guy is pretty flat, tired, sick and lethargic– struck down once again.

Depending on how he goes after the General anaesthetic and given the amount of oxygen he is requiring there is a possibility he will be moved to ICU so that he may receive one on one care if required. I’m hoping this doesn’t happen as it’ll mean we’ll lose our reservation in Suite 7 and will need to pack his toys and pull all of this down.

You Know You’ve Been in Hospital Too Long When…..

1.) You can tell the days of the week by whats on the menu.

2.) You can tell which overnight carer has selected the food from the menu

3.) You pretty much know all of the nurse names on your ward, their children’s names, marital status, length of employment and any other small talk info you manage to glean along the way

4.) The Department of Health standard issue sandpaper, I  mean toilet paper is really starting to irritate you

5.) You feel like you’ve trekked 1ookm’s of hospital corridor and know every back alley and staircase

6.) You look forward to your weekly Saturday overnight stay at Club westMed because:

        a) it is a quiet retreat from the 5yr old chatterbox and 9mth old Tornado

        b) You get to catch up on your reading

       c) You save the once a week hair wash, blowdry and straighten for those 10 minutes that are uninterrupted and all to yourself

7.) You have established 5 very different driving routes from Manly to Westmead- (thanks Jules for the idea)

8.) You know where every Fitness First gym is along all of these routes, their timetable and which class you could try and fit into the schedule.

9.) Give me another month and I’ll keep adding to the list

Chemo Come Down But Still High in Spirit

Day 11 of this 28 Day Chemo cycle and so far so good.  Last night one of his doctors explained to me that on a good run (ie no pancreatitis, NoroVirus, Kryptosporidium, Salmenella, or any other types of infection) his blood count will trend down, flatten out and then climb back up on their own without any drugs. The cycle will go like this probably almost weekly over the 4 weeks as different drugs are administered. One drug in particular causes this cycle and is given Tues-Friday with a 3 day rest to give the bloods a chance to come back up.

Earlier in the week he did receive both a platelet and blood transfusion in preparation for a Lumbar Puncture and intrethecal (think epidural) Chemo which was given under General Anaesthetic on Thursday. On Friday his blood counts continued to trend down as predicted and yesterday he was flat, tired and lethargic. The beginning of what I thought was going to be a downhill slide. This morning he was much more energetic,lively, cheeky and was able to go home for the afternoon. This evening when we returned to the hospital it appears his bloods are on the way up for the moment so really all is going as well as can be expected. I can’t help but keep in the back of my mind that it took a good 4-5 weeks before he became severely ill last round.

However, this afternoon we had a very special time at home and I really think he was the very best he’s been since even before Christmas. Talking, playing,happy, calm and so very content. It’s amazing how much lighter things can feel when you see him like this, a much needed welcome relief to say the least.

The High Before the Low

Edward is quite possibly the best he has been in the past 6-8 weeks and today was one of the very best days I’ve spent with him in a very long time. He was a very happy boy to see his mother first thing this morning, and for most of the day was a calm, content cheeky little guy slowly returning to form. Entertaining the nurses, hold court from Bed 7 and ordering everybody about.  He was interested in different activities, ordered his own meal and applied himself………but I’ll stop now and let the pictures speak for themselves:

As expected his blood count is on the way down and this morning he was given a full blood transfusion.  These will continue to drop which is all part of the course.  This afternoon, despite the laughs he spiked a temperature over 38 which for an oncology patient means 48 hours in hospital on IV antibiotics to assist in fighting off any infection the body may have on board.  No wonder they weren’t keen to discharge this happy little guest.

On a different note, I realise the pic below does not contain the little guys smiling face but couldn’t resist sharing. I found it this morning on my walking circuit around Parramatta Park. Only in Parramatta, the geographical centre of Sydney where English can sometimes be a very, very second language-onya Parra Council. Luckily theres both a Children’s and Adult hospital close because you’re nose is probably going to need it after 3 hours.

A Busy Weekend

So far so good, although the proof will be when his blood counts start to drop towards the end of the week will we get a better reading of how he will travel through this round.
One of the interesting things his Oncologist said the other day when talking us through the plan was the fact that a more intense reaction to the Chemo is a good indicator that in fact the drugs are working to eliminate the Leukemia Cells and therefore a better outcome, ie a cure. He went on to say that they can become concerned about kids that sail through the Chemo as it may indicate that the dose was not strong enough to eliminate the cancer.

Poor little guy cant’t win- they worry if you become too toxic and they worry if you don’t get sick enough. In my heart I know he’s still sick because he’s started to eat sushi, still declining on the Freddo Frog front and no longer sucks his dummy – just holds onto it occasionally for good measure.

It’s been a busy weekend for all of us, as the little guy has been out on all day Gate Passes- visiting friends, celebrating his Grandma’s Birthday, beach, cafe and hanging out at home with his brother and sister. It’s interesting to see just how much he enjoys being out of the hospital eating and talking way more than back in his hospital room.

There’s talk of a possible discharge later in the week but they’re a little reluctant since there’s a pretty high chance he’ll be back in once his blood counts start to drop again so they’re thinking we should just keep our room and bed. Perhaps it’s part of the Preferred Guest Program, keep those Frequent Flyer Points coming in.

In the meantime here are some pics of the weekend he enjoyed………

All Smiles for Commencing Chemo-Day 1, Round 2

Despite a rough and sleepless night as you can see from the pics he was relaxed there were many smiles to be had during his first infusion of the next round of Chemo. Here’s hoping they last.

I think the face says it all on this one. Clearly not happy with his new little Oncology Registrar attempting to assist with the infusion. You too would not be impressed if placed in the hands of this not littler brother.

Twas the night Before Chemo

And all through the house at Grandma and Gramps house there were smiles……..

…..well on most of our faces.(Glad you’ve all got a good look of the greys in my hair part.  There’s not a lot of time to get to the hairdressers at the moment. The other photo I had was a cracker of me looking but this blog is about Ed, not me)

Edward continues to slowly regain his strength both physical and inner just in time to commence his next round of Chemo tomorrow. This afternoon the little guy was granted a Gate Pass for 5 hours and we had the pleasure of taking him back to his Grandma and Gramps house for the afternoon and into the crazy dinner hour. Despite being tired there were glimmers of the old Ed and it was a rare and special afternoon to have all of us together under the one roof.

As Dr Santosh Valvi, one of his Oncology Doctor’s said he did the wrong thing and smiled at them- the green light that the little guy is ready to commence the next part of the proposed protocol tomorrow. At this stage they are not proposing to alter the protocol, will forge on with the standard plan and make any changes or rests if the little guy becomes too toxic again. Apparently it is not uncommon for patients to need breaks during this time due to other infections they contract.

This next stage is 28 days and involves continual oral medication and 4 times a week of IV infusions. These chemo cocktail is different to the last although alot of the side effects similar with the added side effect of diarrhea-something Ed battles with whatever the day is- Chemo or not.

At the very minimum he will be in hospital for another 2 weeks whilst they monitor his progress and offer any type of medical support he may need as the Chemo progresses. Due to the chemo, his blood count will be at another at all time low in 10 days from tomorrow (Thursday 18thAprril) when he may contract any number of infections and become unwell ….fingers crossed this doesn’t happen again to the same extent.

In the meantime, he will have  gate passes through the day and will return to the hospital in the evening for monitoring and support as long as that smile stays on his face, his temperatures down and his pain levels controlled.  This is something we will all enjoy for the time being and it’s a great lesson in enjoying those very precious moments.

In other news, this evening the not so virignal Gramps is back on the Variety Ward with Ed in the care of the lovely Torana loving, Ranga intolerant Belinda- sweet dreams to you all!!

What a Difference a Week Makes

This time last week we were celebrating the fact that we were able to cuddle our little guy, today we had this

Followed by an outing to the hospital park

It was smiles all round in our family today as you can see.

The plan pretty much remains the same as my last post. Sit tight, wait for his tummy to repair and commence the next round of chemo more than likely Monday week. All we can do is brace ourselves and hope his reaction is not as severe as last time. His Oncology Doctors have some big decisions to make in the next few days in terms of adjusting the dose of Chemo to avoid such a Toxic reaction without comprising the desired outcome of s complete cure. All we can do is put our trust in them and hope that they find the correct balance.

Tonight is my first night at Club Westmead in a while and with the little guy feeling brighter and not as sick it’s actually quite nice cuddled up in bed with my Ed on a Saturday night-Cuddles, weekend papers and not one other job I can do except care for him and catch up on my reading. It’s no Club Med but quite peaceful for the time being.