Almost there... (Day +23)

Max had a pretty relaxing and uneventful day today; visits from Mawa and Oma & Opa, watching tv, doing puzzles, playing games. You know, the usual. So in today's blog, it's a good opportunity to reflect on Max's not quite excellent but far from bogus adventure. Here we are now, writing our blog from Max's room for what will probably be one of the last times. We have already been told when we can expect Max to be discharged but another indication that our time here is drawing to a close is the many impromptu visits over the past couple of days from nurses who have cared for Max. Max it seems has made quite the impression, and although the nurses are ecstatic for us that everything to date has gone so well, they also seem genuinely sad to be saying goodbye.

As strange as it may seem, we can't help but feel a tinge of sadness that our stay at the Royal Childrens Hospital is coming to an end. Max and his little body have been through such a harrowing journey over the past five weeks and yet the courage and strength with which he has handled his treatment and the spirits that he has maintained have allowed us to have many joyful moments together, particularly in the last couple of weeks. Although we are all aching to leave, we will do so with many fond memories of all the smiles and laughter that Max has bought to those around him.

Die Zahlen:

White cell count: 2.5 (6.0-17.0)
Neutrophils:  1.60 (1.5-8.5)
Haemoglobin: 89 (110-140) *
Platelets: 25 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

Thankyous:

• Christine & Leon for the fun fishing game. It's already been given a fair thrashing.
• Sandra & Peter for the magnetic puzzles and activity book. Fun for all the family.

Cheers,

Tim

Closer to rolling out the door (Day +22)

Hello everybody. The good news of the day is that it looks like Max has got his appetite back! He put away quite a bit of food today, including: a piece of vegemite toast (no crusts), a bowl of cornflakes, a mini pizza, 3 savoy crackers, a sausage, 4 potato gems, two chicken nuggets, a freddo frog and an easter egg. Not only that he also managed to throw back 3 bottles of orange juice. It's fair to say that he exceeded his Weight Watchers points for the day. If this rate of consumption were to continue we might have to roll him out of the hospital doors.

And just when might Max be walking, or rolling out as the case may be, of those hospital doors? Well in even better news, we were given a tentative date for being discharged! We won't spill the beans on the date until we have well and truly left the building as there are a million things that could happen between now and then. That said, the main doctor who has just returned from a two week trip to Europe (missing all of Max's hijinks), is very impressed with his progress. She warned us that Max has a long way to go before he is considered to be fully recovered from the transplant, as in at least 12 to 18 months away, but for now he is very close to being able to go home, or in our case, to take up temporary accomodation in an apartment across the road. We have decided that in the week or so after being discharged that we would like to be close by to the hospital due to the daily trips Max will be required to make back to the oncology ward for blood tests, tranfusions, to say hello to his many girlfriends (ie the nursing staff), etc.

The Numbers:

White cell count: 2.7 (6.0-17.0) **
Neutrophils:  1.35 (1.5-8.5) **
Haemoglobin: 91 (110-140) *
Platelets: 56 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

**  These numbers have been falling of late but there's no need to panic just yet. We were told to expect this to happen once they stopped giving Max the G-CFS (white blood cell booster stuff)

His blood pressure is also a little high (mean of 90) but we have been told that this could simply be a side effect of the cyclosporin. They are treating the high blood pressure with drugs.

Thankyous:

• Bec, Dave and Benjamin for groovy glow stars
• Connor (with help from Eph and Mani) for the easter bunny
• Aunty Juda for, once again, another beautiful card.

Cheers,

Tim

Out and about...sort of (Day +21)

Max rounded out the long weekend with......you guessed it...doing jigsaw puzzles, balloon-astics and eating chocolate. However, today he did a lot more of these activities out of bed. In the morning he did some drawing at the desk, 

then he even ventured out of his room (in the 'anti'-room - where the nurses station is, but still in the isolation section) to play more balloons and games with some nurses.

Oma and Opa also came to visit while Tim escaped the hospital for some footy action. It was certainly an action packed day. 

Medical bits:

Max's main issue at the moment is getting him to eat and drink. If he was able to have chocolate for breakfast, lunch and dinner - there would be no issues, but this is obviously not ideal. As a trial, the feeds (via Mr Nose) were turned off for 24 hours today, just to see if he would eat anything substantial orally. He did manage quite a bit (perhaps half of what would be considered normal), but I guess that was to be expected as he has been either intraveneously fed or fed via Mr Nose for around four weeks and his stomach will take time to readjust. Tomorrow, the dietitian will give her suggestions of what we should do, based on what he has eaten today.

By the way.......Poo escapades are back! We had a super-dooper one today! Up his back, escaping the nappy and travelling down his legs and all over his track-suit pants. Oma can vouch for it - she was here when it happened...but great timing for Tim...who arrived back from the football, just in time! Lucky Daddy!

Max's blood pressure has also been rather high today; medication  was given this evening and it is slowly coming back to a decent level.

Max also has a mysterious rash - it comes and goes, of course it goes as soon as the Dr's come to inspect. They don't seem to be too concerned. I'm sure if it was serious it would stay put.

Tim goes back to work tomorrow...boo hoo. It's been so wonderful having him here to help out for the last 3 weeks. We'll miss you Daddy! But hopefully he will still be up for night duties.....won't you Tim??? Yes!!!???

 

The Numbers:

White cell count: 3.4 (6.0-17.0)
Neutrophils:  2.1 (1.5-8.5)
Haemoglobin: 94 (110-140) *
Platelets: 16 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

How did the Easter Bunny find us? (Day +20)

Somehow the easter bunny managed to track Max down in hospital and leave him a chocolate bunny. That easter bunny sure is smart.

The Counts:

White cell count: 4.1 (6.0-17.0)
Neutrophils:  2.75 (1.5-8.5)
Haemoglobin: 98 (110-140) *
Platelets: < 10 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

Thankyous:

• Toni, Knut, Petrina and Dave for the presents. Max will have a lot of fun 
• Heidi for the gifts for Max and Mum. Bee certainly deserves some pampering.
• The Gardening Easter Bunnies who visited our house (could that be Peter and Sandra?) for not only leaving behind eggs but also for tidying up the garden

Balloon's o' fun (Day +19)

While Max and Tim are currently lying on the bed watching "Herbie the Lovebug" and having a lovely time (see below), I am lying on the rock hard couch/bed stuggling to find something somewhat entertaining to write about today's events. I would love to be able to write something really exciting...something that would make you all go...."WOW, that's so awesome"....but once again it's been another one of those 'boring' days. 

Things are going along smoothly. Max has his moments every now and then....for example, crying if we tell him off for picking at his dry lips (side effect of the chemo and the dry hospital air doesn't help the problem), but like flicking 'off' a switch he immediately stops sobbing at the mention of "would you like some chocolate?". I'm not too happy at the potential chocolate addiction we may be instilling in Max, but hey, it's Easter, we're in hospital....and it's a quick fix! I have attempted to lather his lips in Vasoline to help with the cracks, but this sets off another crying fit "No Mummy, no lipstick!" I have had to sneak it on whilst he is asleep, but he still somehow manages to wipe it off! What to do?

Max has a new found fascination with balloons. Some short videos of his "Tapping and Kicking" 'balloon' skills are shown below.

Max's score card of the day:

White cell count: 4.5 (6.0-17.0)
Neutrophils:  2.66 (1.5-8.5)
Haemoglobin: 98 (110-140) *
Platelets: 20 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

Happy Easter, here's hoping the Easter bunny brings loads of chocolate to you all xxx

Good Friday (Day +18)

Max had a difficult night last night. He had restless sleep and woke up at about 1:30am in a teary state having soaked through his sheets in sweat. We suspect that the distress was caused by him going cold turkey on the morphine yesterday and not being given any subsititute pain relief medication. He was a bit miserable again this morning but the nurses were on to it giving him some codeine which will be switched tomorrow to panadol and then hopefully to nothing not long after. Opa and Oma paid a visit and once again gave Bee and I a chance to have a meal away from the Hospital. Aunty Jo and Uncle Andy also dropped by this evening to give Max a wave from outside the fishbowl.

Today, being Good Friday was the day of the Hospital's big appeal. As you would expect, we have a new found appreciation of the work that the hospital does and can't talk highly enough of the quality of care provided by all the staff that have dealt with Max. I couldn't imagine a more difficult and heart wrenching job than dealing with ill children and yet these people do their jobs with such grace, compassion, good humour and professionalism, it is truly awe inspiring. Needless to say, it is a very worthy cause. Most of the stuff you see on the telethon happens away from the hospital so it was pretty quiet around here today. On the ward we did have a few special visitors including Ronald McDonald (yes, THE Ronald McDonald and to those who were wondering if he actually lives at Ronald McDonald house, the answer is no. Nor does Mayor McCheese, the Hamburglar or Grimace), a person dressed as a drop of water (what tha?) and some volunteers handing out free easter eggs.

Zee Numbers:

White cell count: 4.4 (6.0-17.0)
Neutrophils:  3.13 (1.5-8.5)
Haemoglobin: 103 (110-140) *
Platelets: 18 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

Thank Yous

• Jo, Andy, Pop, Sash and Dig for the bag of goodies.

Cheers,

Tim

Saying goodbye to the friends of Mr Hose (Day +17)

Excuse us if this blog is starting to make for boring reading, but Max had, just like the past four or five days, another fun filled and relaxing day. He had another visit from the physiotherapist for a game of balloon volleyball, some kick to kick and some duplo block building. The stream of nurses popping in to say hello does not stop; he certainly is popular with the ladies. After tea, we played a game of Thomas the Tank Engine bingo which was suprisingly entertaining for all and then Max crashed out watching his favourite show of the psychic-detective genre, 'Medium'.

In another sign that the end of Max's hospital stay is imminent, the doctors have begun to drop in conversation for the first time the 'H' word. And by 'H word', they mean home. His spirits and white blood cell counts continue to rise for which the doctors are very happy with. For the doctors to be able discharge Max he also needs to be receiving all his nutrition orally, ie eating with his mouth, be producing, to put it politely, more solid number twos and be off all intravenous medication. Max is well on the way to crossing off all three of these requirements.

Today he was taken off his IV supply of food (Total Parenteral Nutrition or TPN) although he continues to also be fed formula via his nasogastric tube (aka Mr Nose). The formula will be reduced and eventually cut out as he picks up his eating. He continues to eat more and more each day; today he had a decent crack at his lunch and he annihalted a chocolate 'Lindor' ball for desert. He certainly hasn't lost his sweet tooth. As for the number twos, they are definitely looking chunkier, less chocolate fondant and more rice pudding.

Ever since Max was admitted to hospital four weeks ago he has been hooked up to a number of IV pumps to administer via his Hickman Line (aka Mr Hose) the various drugs, food substitutes and blood products required for his treatment. The number of pumps connected to his IV lines peaked at ten! As of today he's down to just the three; one for Heparin to ensure that the Hickman line does not become blocked up and two to administer any required transfusions. Today the nurses turned off the remaining IV medications including cyclosporine (anti-rejection drug which will now be administered orally), amphotericine (antifungal drug) and morphine (pain relief).

As thoughts start to turn to home we are beginning to look out for Max's next big challenge. Maybe it will be acting, 'Zoolander 2' perhaps?

Here are the latest stats:

White cell count: 4.1 (6.0-17.0)
Neutrophils:  2.09 (1.5-8.5)
Haemoglobin: 109 (110-140) *
Platelets: 14 (150-400) *

* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.

cheers,

Tim