Ed's Daily Progress

Easter Bunny Brings Some Cuddles

Slowly but surely things are on the improve although the pain remains. It certainly was a Good Friday when his Neutraphils went from 0.5 to 5, and then hopped up to 10 yesterday. An increase in Neutraphils will give his body a better chance to fight off infection and assist in repairing his body, especially the ulcers lining his mouth and gastrointestinal tract. Once these have repaired it is hoped he will be in less pain.
They have taken him off one lot of antibiotics, with 4 remaining and as the week progresses it is hoped he will come off those along with the oxygen and Special K and Morphine. As you can see from the pic below, it’s a puzzle of leads for the nurses to work through with the daily change over of his leads from his Central Line with all of the feeds and medication which take a good 45 minutes each afternoon.

The beautiful nurse Emma, pictured above provided a special opportunity yesterday afternoon for my first hug with Ed in over a week. It would be an understatement to say it was an emotional though beautiful afternoon on the pink recliner cuddling Ed whilst he slept blissfully on my chest for 4 hours or so. He appeared to be the most settled he had been all day.
I dare say we would have stayed longer on the pink lounge had the bar opened for Happy Hour cocktails!


Meanwhile, outside the room the not so little brother is have a wow of a time at the park

Flirting with the nurses


And providing the entertainment


Something I think he’s going to be doing for the rest of his life.

Ed's Daily Progress

Rest and Recouperate

It’s been a relatively quiet day here on the Variety Ward. Ed’s heart rate has stabilised, his temperatures down a little, and his Neutraphils on the way up.
It’s now just a matter of sitting tight and waiting for his body to repair itself of the mucositis and the triple tummy bug trifecta. His Liver Function has not improved so today they performed an ultrasound and found that there was no change in the appearance which is good news, again it’s sit tight and wait.
Whilst he was having the Ultrsound I managed to caress his head and remove the remaining tufts of hairs and he is now sporting a hair cut very similar to that of the Jolly Jumbo, Tom.
This morning I made use of our Ward Granny and managed to get to the gym this morning which was a very welcome relief.
Hoping the Easter Bunny brings continued improve over the break in the hope that we can commence the next stage of Chemo the following week.

Ed's Daily Progress

A Call for Volunteers

Given Ed’s reaction to Chemo so far we are now working towards the possibility of Ed staying in hospital for the next 6-9 months. Of course we hope this is not the case but the only thing I’m banking on at the moment is the Red Cross Blood Bank who organise almost daily transfusions at the moment. I honestly had no idea how much blood is transfused into cancer patients whilst receiving Chemo. So if you can, give blood-

I’ve come to the realisation that Ed is getting the best possible care in hospital and I now need to focus my attention to Pete, Tom, Isabel and the Grandparents who have been staying out at the hospital- virgin or otherwise.

Furthermore, given that we are expecting that this is going to be a longer haul than expected we’ve had to change tact again and now looking for assistance in caring for Ed bedside- daytime or even the odd night at Club Westmead. We just need to grow the volunteer pool a little more with holidaying grandparents, flu season around the corner and just because we need some more help.

Please, please, please dont’t feel compelled in any way at all to do a thing. I’m simply sharing this need with those that can. There’s no need to commit to anything regular but just let me know your availability so that I can get together a bit of a plan and a list of those available.

At this stage, and it may change, but what we think we need is something like this:

3:00pm-7:00pm- Day visit wrangling Tom at the hospital

7:00pm-9:00am- Overnight stay at the hospital

3:00pm-7:00pm- Day visit wrangling Tom at the hospital

3:00pm-7:00pm- Day visit wrangling Tom at the hospital
7:00pm-9:00am- Overnight stay at the hospital alternate Fridays

09:00am -12:00pm- Day visit sitting with Ed bedside
12:00pm- 4:00pm- Day visit sitting with Ed bedside

09:00am -12:00pm- Day visit sitting with Ed bedside
12:00pm- 4:00pm- Day visit sitting with Ed bedside

Overnight stays include bed in private room sheets and towels provided, all meals and parking. Current guests, (Judy/Mops) says, “it’s a bit like Business Class- a flat bed, meals and interrupted constantly for attention”. This quote was provided prior to the access we had to the private at the end of the ward which is more like a first class pod (not that I’ve ever travelled First but believe me once the whole thing is over I think I might……all the way to Paris- Fabienne).

Day stay visits have access to bed side treats and a tea and coffee
Parking provided at $6.00 a visit, refundable from parents. Please remind them for the pass as they may forget,

There may come a time when we might need to stop the overnight sleep overs and then move to have somebody there at the hospital between 4:00pm and 9:00pm and then again something like 6:00am-09:0am but lets see how the above plan works.

As always we are ever appreciative of your love, care and support.

Ed's Daily Progress

Exit stage Left Pancreatitis, Enter stage Right Herpes

Yep, as if the mouth ulcers and mucositis weren’t enough the poor little guy now has herpes in his mouth which adds another medication into the mix. The good news is that his Pancreatitis has subsided and his pain levels appear to be slightly better managed with a combination of the Fentanyl and Ketamin. He also seems a little more alert and was actually very distressed when I left this evening, which although absolutely heart breaking a reasonable sign that he has a bit more fight and energy in him. I even tried to cut him a deal that if shared his Morhphine and Special K I would try and take his pain away……….ooh if only I could. I honestly think that watching him in so much pain and feeling so helpless other than a push on the button of his NCA ( Nurse Controlled Analgesic) is pretty tough going for all to watch.

It’s just a waiting game at the moment for his bloods to improve which will give his body to fight all the infections. His Neutraphils were back to zero today although his overall White Blood Cell count was higher today indicating that tomorrow his Neutraphils should be back bigger and stronger than they were yesterday. Fingers Crossed!!

I had another good chat with his Oncologist today, Dr Santosh Valvi who actually apologised to the little guy for making him so sick. He acknowledged that Edward definitely sits at the severe end of the spectrum with regards to the side effects of the drugs. He reminded me that 20 years ago the cure rate for children with ALL was around 5% , and is now around 80%. He also pointed out that the current research into childhood cancer is about tailoring the treatment protocols to the individual based on the enzymes in their body, genetics and a whole lot of other tests. This would indicate that in years to come children will be given appropriate doses of medication to kill their cancer rather than a uniform, blanket zap that kills and destroys all and sundry. I guess it was a reminder the importance of supporting cancer research to better improve treatments and minimise what’s happening to kids like Ed.

Hoping tomorrows post brings an increase in Neutraphils to the little guy and an overall improvement to his health.

Ed's Daily Progress

Special K for the very Partied Out Ed

It’s been a busy few days here on the Variety Ward. Our little boy is still in a fair amount of pain but it appears he may have turned the corner. His recent blood tests have indicated that he may be on the improve, though the doctors are suggesting this may take up to 10 days.

After spending most of the last part of last week either in pain or zoned out on Morphine it was decided to introduce some Ketamin into the cocktail mix although I’m not sure how they fit it on the IV pole. This was just in time for a Saturday night in hospital with his Gramps first night’s stay. As the lovely Belinda pointed out, Gramps was the “Variety Ward Virgin”.

Ed is still on the Morphine as this can be called for when required and the Ketamin runs in the background. It appears that the Special K has bought him back into the land of the living a little more and he appears a little more alert, though still in pain when not sleeping.

As I’ve mentioned before they’re waiting for his Neutraphils (the White Blood Cells that fight infection) to return. Yesterday there were cells in the bloods indicating that these would be made and today there were Neutraphils so the doctors are confident that we should see some improvement in his overall health.

After many different scans, x-rays, ultras sounds and tests it appears that the pain he is experiencing is a severe bout of Mucositis which is inflammation and ulcers caused by the Chemo. As my Mum said, if he gets pregnant they’ll blame it on the Chemo. There are many of these ulcers visible in his mouth and around his lips. Apparently these will be coated all the way down his gastrointestinal tract to his poor little bottom causing pain at every bowel and bladder movement. His doctors have acknowledged that Edward appears to be experiencing the very severe end of the spectrum with the side effects of Chemo and are going to perhaps alter slightly the plan for the next Part of the Protocol.

As Ed’s VIP Gold Card continues to earn the miles we too are receiving some more assistance. We now have access to a closed, single private room at the end of the ward near the parents kitchen making things a little easier for the overnight stays and have been appointed a Ward Granny who is available to sit with Ed between 9:00 and 14:00 3 days a weeks- Monday, Wednesday and Friday.
We have also been given permission to call our own Rapid Responses should we feel we need to.

Whilst we wait for Ed to improve it’s been a busy few days. We’ve had Elissa and Minty up from Melbourne which was fantastic and a welcome relief for all. Minty was very impressed with the off switch to Ed’s little air bed as she watched him slowly sink as it deflated.

Today I managed a quick yoga session at the hospital, followed by some songs to the boys from the Music Therapist. The Easter Bunny hopped on by to deliver some Chocolate and a couple of the Parramatta Eels stomped in. I thought Tom was pretty excited to see the Easter Bunny as he started to make rather loud growling noises but his excitement at seeing another couple of big, buff, muscly Eels was by far the best moment of the week for him. I’ll leave it to the other League lovers in my family to discuss that part of Tom’s development with him.

Here’s hoping the next post brings a continued improvement in his bloods and a happier little Ed.

Ed's Daily Progress

PM loses Vote of Ed’s Nurse whilst we wait for the return of the smile.

Another eventful day yesterday here on The Variety Ward triggering more Rapid Responses as a result of increased heart rate, rise in body temperature and pain from his stomach, groin and legs. There were visits from the ICU doctors, Pain Team and also his Oncologists, all scratching their heads over the cause of his pain. Last night an ultrasound of his abdomen and groin revealed nothing.

At one stage yesterday they were discussing the possibility of inserting a catheter as is appeared he had some pain when urinating but this has been discounted for the time being. Really, how many more plastics tubes could one little guy have protruding from his body.

The waiting game continues as we sit tight and wait for an improvement in his bloods, Pancreatic enzymes, Liver Function and the stomach bugs trifecta he is fighting to improve. The numbers need to increase in his FBC ( Full Blood Count) particularly with his Hb (Haemoglobin), WCC (White Blood Cell Count), Neut (Neutrophils), and Plts (Platelets)……are you impressed how well I’ve learnt to read his reports since his Dx (diagnosis).

In other news, it’s amazing what you learn sitting for long periods of time bedside about the state of politics. Here is a quote from one of Ed’s nurses Belinda regarding the excitement in Parliament yesterday.
“I’m not voting for that silly Ranga she called an election on National Rana (sic) Day”. I did not know such a day existed to celebrate the Torana. I might add this was the very same Belinda who insisted the new parents bed came with us in our move to Bed 7 yesterday. A heart of gold that Wests Tigers, Holden login’ chic. She’s been fantastic these passed few days looking after him.

Hoping tomorrow’s post brings news of a happier little Ed tomorrow.

Ed's Daily Progress

A Rough Night Brings some Positive News

It seems our little Ed is developing some nocturnal habits. Relatively calm peaceful days followed by rough, painful nights. Each morning brings a visit from The Pain Doctor (Yes that is the proper name of the team) and an increase in the pain relief.
We did have a small win in his results from the bone marrow biopsy which were unable to find any Leukemia cells underneath the microscope.
This indicates that the first round of Chemo was succesful and we now move into the next phase of ensuring it doesn’t return.
This part of the protocol brings with it a whole new cocktail of Chemo drugs often with worse side effects than the last lot.
It’s planned that he will spend the rest of the week recovering and will start next week on the new protocol.
Tomorrow they are going to perform another ultra sound of his abdomen and groin to see if there is any thing that may be causing pain.
At a guess I think the Easter Bunny will be looking for our little Ed out at Club Westmead.

Ed's Daily Progress

And on the 34th Day it was Norovirus

After a calm, though tired and lethargic, sleepy yesterday afternoon, the night bought with it a repeat performance of the Saturday night special- crippling pain from the Pancreatitis. Pete spent the night in an upright position holding him will he clutched at his stomach in pain, hanging out for the next 10min slot when he could be administered pain relief.
Too much day rest or maybe he just wanted to be up partying with his Dad on his 42nd Birthday. Either way, both Pete and Ed looked like they had been through many rough rounds when I arrived at the hospital this morning.
After reviewing him they ascertained he was well enough to go under a General Anaesthetic for his lumbar puncture and bone marrow biopsy and decided they would do a CT scan whilst they were at it.
CT scan came back clear with no sign of infection anywhere although his stool test tested positive to Norovirus to add to the other bugs partying in his gut.
We should get the results from the bone marrow tomorrow which will establish how effective this first round of Chemo has been. In theory they should not be able to see any of the Leukemia cells underneath the microscope.
It is hoped that he will spend the rest of the week recovering from his stomach bugs and will commence the next lot of Chemo next week. It doesn’t look like he’ll be checking out anytime soon and will be at Club Westmead at least until the end of next week.
Here’s hoping he behaves tonight for his Mops. (Pete’s Mum)

Ed's Daily Progress

The Search for a smile continues

Despite a dramatic start to the the day with an increased heart rate prompting his 6th rapid response call in the passed week Edward has had a relatively calm day catching up on much needed rest.
His scheduled lumbar puncture and bone marrow biopsy has been deferred until tomorrow when hopefully he’ll be feeling a little better. Whilst under the General Anaseathetic they are also going to do a CT scan to investigate any further causes of his poor state and lethargy.
As you can see from the pic below there is an amazing cocktail of drugs being pumped into his body at the moment, modern medicine is absolutely mind blowing. His IV pole is certainly overloaded and in true Ed style he’s opted for the delux, 5 star model with all of the bells and whistles.

In other news, Ed moved rooms over the weekend to a room where the monitor was relayed back to the nurses station. It had a brand new parents bed which both his Gransma and father claim to be the best bed in the hospital. A little treat for a guy celebrating his 42nd Birthday at Club Westmead- Happy Birthday Pete.

Ed's Chemical Cocktail