Just for something a little different..........not! (Day +45)

Just a short one today…..

Max had a number of visitors: The Music Therapist, Play Therapist, Social Worker, Physiotherapist, Mapa and Oma & Opa! He has been doing pretty well…skin clearing, mood slightly on the improve, and no poo!.......until late this arvo that is….

……Max has been pooing from 5.30 this afternoon…it’s now 10.30pm! and no signs of it slowing down. Not huge amounts…..just fart ‘follow through’s’ – (sorry if that offends anyone) – but those small bursts are, I would have to say, more frustrating than if he were to be doing huge whoopers at a time.

During this poo-scapade Max did utter “sorry for doing poo-poo sausages Mummy”, his appreciation does make the cleaning up process a little more bearable, but nonetheless exhausting….I do hope I get some sleep tonight??!!?!....bring on the weekend!

Anyway, must dash…..I hear rumbles at the station.......will update again when I can…………

Thankyous:

• Inge for the lovely books...Either I need to improve on my German...or...Opa can have the pleasure in reading them with Max
• Morgan (friend of Aunty Lou Lou) for the brilliant Aeroplane book and the falling car toy
• Chris and Di for the beautiful card
• Aunty Cheryle for the magnificent meal, wine.....and espresso!

Poo Story 236: Revenge of the t.... (Day +43)

After a pretty uneventful Public Holiday Monday, Max had a busy day today with visits from the play therapist, the art therapist, the physiotherapist, the social worker, the (not so) portable x-ray machine and Mawa. He is still pretty flat and continues to be irritated by an itchy rash covering most of his body. In what we hope is a good sign, none of the doctors seem too concerned by the return of the rash. They are keeping a close eye on it and potentially, he may need to have his steroid dosage upped again if it is doesn't settle down.

I got a text message from my football club this morning requesting my presence at this Saturday's season defining clash against arch foes Essendon, urging, and I quote, '..let's fill the 'G with Brown and Gold.' Now Max doesn't have a mobile phone, but I suspect his bowels got the message as he's been pooing up a storm all afternoon. Were these acts a show of support for his team, flying the flag as it were, or a scathing commentary on their recent form, who knows? (For the football illiterate, my team Hawthorn wears a brown and gold jumper. Creatively minded opposition fans have been known to refer to Hawthorn as the 'Poos & Wees' on account of their colors).  Anyway, Max's diarrheoa, in correlation with the rash, has returned with a vengeance. As a precaution, he is wearing to bed adolescent sized nappies and his bed has been fortified with extra strength coverage. We are both praying that Bianca, being on night duty, has an easy night. Hopefully our next update is less scatologically oriented! 

cheers,

Tim

Still toughing it out (Day +41)

The past few days have been a bit of a mixed bag for Max. He tires very quickly, has not been very talkative and has become very clingy. That said, he's had a lot of fun playing with his play-doh that the play therapist made for him and dropped off on Friday and has enjoyed becoming reacquainted with his Wiggles 'Crocodile Hunter' DVD. And every now and again, from nowhere, he'll let loose with a witty aside just remind us of what a brilliant little champion he is.

As mentioned in the previous blog, Max received some sizeable doses of steroids this week to try and counter the effects of the Graft Versus Host Disease (GVHD), a common complication of Bone Marrow Transplants that Max was diagnosed with last week. Unlike say with an organ transplant where there is a risk that the body can reject the donor organ, with a bone marrow transplant, the opposite is true; the risk is that the donor marrow can reject the recipient's body. To the new bone marrow, or specifically the T cells that the bone marrow produces and which form a core part of the immune system, everything in the recipient's body is foreign. The risk is minimised by firstly sourcing a bone marrow donor (or even better, a cord blood donor) with as close a match as possible to the recipient, and secondly, post transplant, administering drugs such as cyclosporin and prednisolone to suppress the immune response.

The three places they look for GVHD to show up are in the skin, in the gut and in the liver. Max has showed signs of it in both his skin (the rash and itch) and his gut (the poo). The liver, so far, is by all reports ok. As at today, the steroid treatment has appeared to have lessened the symptoms of the GVHD but there still looks to be some way to go before he is out of the woods. He finally pooed again today after a gap of about 36 hours. For those of you who are interested in such things, the poo was of a much thicker consistency than his previous efforts of the week, kind of like a sinewy paste. This is a good sign that his GI / tummy troubles are starting to settle down. As for the skin, he has gradually showed signs of improvement over the past few days, pretty much shedding one complete layer of skin for what appeared to be a less affected layer. He seemed a lot less itchy and was a little more back to himself. Until today that is. Late this afternoon, the rash on his skin flared up again and he was noticeably itchier. Whether this has been triggered by an 'issue' with a 'dose' of cyclosporin, the tapering of the steroids, or the blood transfusion he received this afternoon, we don't know. Hopefully we can get to the bottom of it tomorrow...

As for the infection that appeared Thursday week ago and was the reason that Max was initially readmitted, it has fortunately been a bit of a non event. Max will continue to be administered the antibiotics Gentamicin and Timentin until the end of this week (Thursday or Friday) just to make sure that the infection is completely eradicated and to cover him just in case anything other infection decides to rock up and make itself unwelcome.

Bee and I have had a couple of opportunities to get out of the hospital, with thanks to Peter and Julie. On Friday, we were fortunate enough to attend the wedding of our friends Anthony (Chocko) and Sarah. It was a wonderful and classy evening for a wonderful and classy couple. It was great to catch up with everyone (it's been a while). We look forward to do it again in the (hopefully) not too distant future.

Apologies for the lack of updates. We've taken a bit of time to get back into our hospital living routine. Hopefully the updates will be more frequent as we get into the groove of things. For those wondering where all the football references went, like Hawthorn's season, they've been consigned to the lavatory.

Cheers,

Tim

Itchy, sore and pooey (Day +38)

I apologise in advance if this post is poorly written, but I know many people are eager for some news...so where do I start? As Tim mentioned in the previous post, I came in to the hospital last Thursday morning for a routine blood testing session and appointment with Dr T.....and 1 week on we are still here!

The extremely rare bug that Max 'somehow' picked up...(I have my suspisions)...has been cleared so far... although we were told it could re-emerge, luckily it is sensitive to a lot of antibiotics so is not too mch of a concern. So, that is not why we are still here.

Max's skin biopsy results came back on Tuesday showing that his rash was due to Graft vs Host Diesease (GVHD). It is a real bummer as we were told all along that the risk of getting GVHD is significantly reduced when using cord blood (as opposed to bone marrow), but of course the risk is still there. He was put on a ridiculously high amount of steroids for a few days, and today they have been reduced (as being on this high dose for too long can cause additional complications). His skin looks as though he has been doing it tough in the Bahamas (The Dr's equated it to severe burns) and now his tan/burns are shedding. Nothing has been sticking to his skin which has proved a tad of an issue with regards to the dressing which is keeping his Mr Hose (Hickman line) site covered up and infection free. We now have a sock-like device covering his torso, and hope that someone can come up with a better and more permanent solution tomorrow.

Max's magnificent motions of the bowel have also been a concern. They also believe this to be GVHD (of the gut). He was put on NIL by mouth for 24 hours, to try to calm down his bowel......but this is a catch-22 as the huge doses of steriods he is on is making him ravenous. Max must have thought I had gone nuts with my continual response to his food requests being....."I can't find any at the moment". Unfortunately he is not a stupid child, so I have now begun telling him the truth. He gets it, but is not a happy chappy. The dietitian has said that Max is allowed to eat very small amounts of food which are low in fats, sugars and lastose. Dr's have ok'd this but said it the diarhoea continues Max will need to go back on intravenous feeds (TPN). Naturally the mention of intravenous feeding set alarm bells ringing......this means an extended stay in hospital..... ..bummer, bummer, bummer! Message to Max's bowel: 'please start producing at least some semi solid number twos!!!'

Today Max has also been having quite low temperatures (34C-35C) and very high blood pressure readings. High blood pressure may be related to the high dose of steriods he is on, and low temperatures can be a sign of infection - but seen together can be a sign of neurological problems......sigh....just something else to add to the mix. Some simple tests were done on him today, and naturally he ws fine, but that was not something I needed to end the day!

Here's hoping tomorrow is the start a better day and each day he gets better and better.....we all want to go home!

Thankyou to everyone who has sent such lovely messages....(and gossip!). I will get around to replying to you all...have just been too tired and lazy to do so.

xxx to all

Same same but different (Day +34)

Just a quick update. Max is still in the Hospital. They have identified the infection: good old Delftia acidovorans. Apparently it's not a common one for transplant patients to pick up but since it seems to have responded to treatment, the doctors don't seem to be overly concerned by it.  He is on a course of three different antibiotics including Tazocin, Vancomycin and Gentamicin. Hopefully we can drop one or two of these once the doctors have reviewed his latest test results tomorrow.

He continues to be irritated by the rash on his skin. He didn't sleep particularly well last night with all the itching. They have doubled the dose of prednisolone (steroid) so hopefully this starts to kick in and give him some relief pretty soon. We are eagerly anticipating the results of his skin biopsy which we should get back on Tuesday. These should shed further light on the origin of the rash The poo problems have also returned with a vengeance. Whether its the mix of drugs, the upping of the magnesium doses or just something he's eaten, we don't know but he's unleashed numerous volcanic eruptions over the weekend (bonus points for the topical metaphor). They're not enough to stop intercontinental airline travel, but the have they have certainly left their mark on the local environment, turning many a glacier white facewasher brown.

He's was pretty miserable for most of the weekend but he came good this evening. Hopefully it's a sign that he's on the mend and that he's in for a happy week.

cheers,

Tim

"Just when I thought I was out, they pull me back in" (Day +31, +32)

Unfortunately, due to showing signs of an infection, Max is back in the hospital. Fortunately he still seems well but the doctors want to keep him in as a precautionary measure. Not that we ever expected that the road to recovery would end on leaving hospital the first time, it is a bit of a shock to be back here again so soon. Hopefully this is just the equivalent of encountering a "Road works next 1km : Slow Down" sign and that we are all motoring along at speed soon after.

Max came in to hospital on Thursday as planned for blood tests and an appointment with Doctor T. About an hour and a half after having the blood drawn, whilst waiting for his appointment, he got the shivers. Quick thinking Bee wrapped him up in his jacket and got a nurse to check his temperature and sure enough it had spiked to 39.2. We were later told that it was possible on flushing his lines a bug of some sort was pushed back into his body, triggering an infection in the blood. Tests have come back today showing that he is positive for a gram-negative bacilli (rod) infection. They will continue to keep testing the cultures to see if they can identify the exact type of the infection in order to determine how to best treat it. After the initial spike, his temperature returned quickly back to normal (and before any meds were taken). He will need to be on antibiotics for at least the next nine days, time which most likely will need to be spent in hospital. In other medical matters, over the last couple of weeks a rash has developed on most of Max's skin and has become progressively more irritating. Today a skin biopsy was taken for testing to try and determine the cause of the rash, whether it be a symptom of Graft Versus Host Disease, a reaction to his medication or something else. They have also upped the dose of steroids to try and get the rash to settle down.

The good news is that despite, for three days, having had such a good time getting reacquainted with home Max is happy to be back amongst his hospital friends, many of whom have dropped by in the last couple of days to say hello. We are back in the fishbowl but we are now in room T3. As mentioned above, apart from his rash, he is not unwell and appears to be in good spirits.

Thankyous:

• Steve, Janine, Maddie, Sean and Sophie for the wonderful balloon arrangement. Unfortunately Max has yet to see it but i did take plenty of photos.

Cheers,

Tim

Home Sweet Home (Day +28, +29)

Need we say anymore?

Numbers, Numbers, Numbers:

White cell count: 4.7 (6.0-17.0)
Neutrophils:  2.91 (1.5-8.5)
Haemoglobin: 121 (110-140) *
Platelets: 12 (150-400) *


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

Thankyous:

• Dave, Renee & Eryn for the cool books.
• Henry S for the lovely card.
• Granny Pat & Gramps for the Dora Easter Egg and Biscuits
• Oma & Opa for the spotless house, from the skirting boards to the light fittings

Postcards from North Melbourne (Day +26)

It's been a few days now since we've updated the blog. Since leaving the hospital we've been readjusting to life with all three of us back to living under the same roof, albeit not at home but in a smallish studio apartment across the road from the hospital. Max has been coping very well with life on the 'outside' and is enjoying the freedom of not being permanently attached to an IV pole. He's spent most of his time cooped up in the apartment but yesterday we did manage to go for a couple of walks. It's a relief that Max does not put up a fuss when we put on the face mask that he is required to wear anytime we leave the house. He has already worked out that it is a necessity, asking when the prospect of going for a walk was raised "Where's Max's mask? I need to put a mask on". And just like a Japanese public transport commuter he seems quite happy to wear it and hasn't, apart from the first time he wore it, tried to rip it off. 

On Saturday, Max made his first trip back to the hospital as an outpatient, this time just for some blood tests. For the foreseeable future he will be required to have blood tests every two to three days to make sure everything is tracking well. The results were ok and indicated that his platelet levels were holding well so there was no need for a transfusion. As he is eating quite well and, with a little help from left over easter eggs, is taking his medications orally without too much trouble, we decided to have his nasogastric tube (Mr Nose) removed. Apart from being sticky taped to his faced, the tube is not attached to anything; it simply dangles down from the back of the nose to the stomach, so it was quite easy to remove. Once the nurse had removed the supporting tape from Max's cheek she pulled on the tube like she was pulling down blinds and it was out in about three seconds. A few tears were shed but it was nice to see Max's unblemished face again. It was also a lovely feeling for all three of us to walk out of the ward hand in hand after being there for little more than an hour. Needless to say we prefer one hour visits to five week visits. We're back again on Monday for some more blood tests and an appointment with Doctor T.

Speaking of medications, Bee and I nearly had a nervous breakdown on Max's first night out of hospital when preparing what seemed like half a pharmacy's worth of medications for him to take (actually I should say that although Max is on eight different medications to be taken between twice and four times a day, we were told by the oncology pharmacist that this regime was pretty light on compared to some of the other kids that come through the ward). We were overwhelmed by just how much information we needed to recall and by how fiddly it was to ensure that we drew the correct doses from the bottle; all bar one are in liquid form. With no nurse to help us it was a pretty scary experience. Fast forward three days and Bee has well and truly become the med prepping master. Once the alarm rings, within a couple of minutes Bee has all the doses drawn and lined up ready to go. I have taken on the roles of sourcing the chocolate bribe and patient wrangler. We make a pretty good team.

Finally, a poo update. We know some of you have been following Max's movements very closely. Well, you will be thrilled to know that yesterday Max, for the very first time, demanded that his nappy be removed and that he be seated on the toilet where, of his own accord, he expelled three of the most glorious looking logs you're ever likely to see. Bravo Maxwell!


Depending on how the appointment goes tomorrow, we are looking to check out from the apartment for home sometime mid week. We all cannot wait.





The Numbers:


White cell count: 6.2 (6.0-17.0)
Neutrophils:  4.07 (1.5-8.5)
Haemoglobin: 118 (110-140) *
Platelets: 28 (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

Maxwell has left the building (Day +24)

Well, the day has come at last. Max was discharged from hospital today after a final check up from Doctor T, five weeks to the day from when he was admitted. Max was a little freaked out on leaving but tonight was back to his cheeky inquisitive self. Bee and I in no particular order are ecstatic that this day has finally arrived, anxious about living outside the security of the ward and completely knackered physically and mentally so please excuse the short
blog.

We still have a long way to go before Max has completed his treatment; he still has medications to take, visits every second day to the hospital to make (we're back again on saturday morning) and so on, but today marks a mighty achievement for Max Der Starke. It's a celebration!

cheers,


Tim

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