Return of the Maxi (Day +16)

It was a tad quieter today. Max did have a session with the Art Therapist which he loved. He also had some special visits from some lovely nurses, who despite not working in the 'fishbowl' decided to just pop in to say 'Hello' to Max.

Once Max finally decided it was time for a snooze, and as I have now got the hang of adding video to the blog, I thought I'd take the opportunity to give you all a quick virtual tour of our luxurious accomodation in our 4m x 4m room. It's hard to believe that we have spent 4 weeks in here already!

With the improvement in his health and the reduction of his medications we are now starting to see the return of the Max we know and love; cracking gags, pulling faces, ordering his parents around and in general, being totally adorable.

Max continues to amaze us with his strength and bravery. He is such a little trooper. He accepts all the nurses' and doctors' pokes and prods with a minimum of fuss and rarely fails to elicit a smile or laugh in the process...he is certainly a charming little prince. 

White cell count: 2.7 (6.0-17.0)
Neutrophils:  1.97 (1.5-8.5)
Haemoglobin: 88 (110-140) *
Platelets: 16 (150-400) *

Normal ranges in brackets

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

Thankyous:

• Lissy and Leigh for the Chockies, DVDs, Cars and Puzzle

• Nick, Nicky, Lachlan for the Puzzle, Thomas game and the chockies

• ...and forgot to mention in the last post thanks for the magazines Marg, John and troops.

• And to Mawa, Oma and Opa for giving Tim and I some 'off duty' time for Lunch and Dinner.

No more masks (Day +15)

Another day, another overflowing social calendar. Max had visits today from the physiotherapist, the social worker, oma, opa and mapa. Until we leave hospital, Max will have physiotherapy sessions a couple of times a week to try and get his body back into gameday shape. Given that he has spent close to the last four weeks in bed he did exceptionally well in today's session to stand for 20 minutes playing toy car park manager. 

Max has let it be known that jigsaw puzzles with less than 50 pieces are no longer a challenge to him anymore. Today he received his first 100 jigsaw piece puzzle. Needless to say it did not stay unsolved for very long.

With Max having achieved neutrophil counts of over 0.5 for more than three consecutive days his transplant has now reached the stage of 'engraftment'. This is confirmation that the donor cord blood cells have found their way to the inside of Max's bones and have started producing new blood cells and is another major milestone on Max's road to recovery. It also means that visiting doctors, nurses and other staff no longer have to wear surgical masks in the room, which Max certainly prefers. As a consequence of the good neutrophil counts, the doctors have decided to take Max off his antibiotics and reduce the strength of his G-CSF (it boosts white blood cell production) injection. If this goes well, they'll take him off the antifungal drug 'amphotericin' later this week. We also lowered his Morphine dosage, and unlike last week, he showed no additional signs of discomfort afterwards. 

The latest counts:

White cell count: 2.6 (6.0-17.0)
Neutrophils:  1.73 ** (1.5-8.5)
Haemoglobin: 89 (110-140) *
Platelets: 13 (150-400) *

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

** Down a little but given the previous big jump, it was to be expected.

Thankyous

• To Marg and John and the rest of the clan for the cool magnetic book and LEGO!!!.

cheers,

Tim

Just another manic monday (Day +14)

After a sedate weekend, Max had a huge day today. Unlike our last manic monday of a week ago which saw Max battling a raging fever and doctors entertaining a trip to ICU, today's reason's for being busy were a lot more fun filled. Max had plenty of visitors today, including:

• The Comfort First Clinician - to award Max his beads for all his treatments endured and milestones achieved. The beads get strung on a leather thread which will become a momento of Max's time in hospital.
• The Play Therapist - for a game of lego and jigsaw puzzling
• The Art therapist - for some painting 
• The Social Worker - for some book reading and aeroplane building

He also squeezed in a platelet transfusion, a dressing change for Mr Hose and some Mario Kart on the Wii. How does one find the time?

Today's Blood Counts:

White cell count: 2.8 (6.0-17.0)
Neutrophils:  1.97 ** (1.5-8.5)
Haemoglobin: 92 (110-140) *
Platelets: < 10 (150-400) *

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

** Yes, that's not a typo!

Thankyous to:

• Cus (Pip) for the HUGE meal
• Bec, Dave and Ben - for the boatload of food
• Claire for the meal, desserts and presents
• Brian, Julia, David, Kate and Megan for the books - they're Golden!
• Oliver, Zara, Kaz and Scottie for the Thomas book - wonderful choice.

A good finish to the weekend (Day +13)

Max had another uneventful day today and spent most of his time playing games, drawing, watching television and reading books. Mawa (Christine) came this afternoon to relieve Bee and I and had a lot of fun teaching Max how to play a (Dora themed - naturellement) Snakes and Ladders.

Max was in full voice today - without the assistance of Xylocaine. Hopefully this means that his throat and mouth are on the mend. His stomach appears to be bloated (and has done so for a while) but all examinations by doctors have found nothing distended and his belly is quite soft to touch. Maybe he's just like his father. His fluid balances and daily weighings show that he is not retaining fluid which is a good thing. Very small traces of blood have been appearing in his wee but then again, the doctors have said that this is nothing to be too concerned about at this stage. We once again tried turning down the pain relief medication, but we found that he became uncomfortable and irritable quite quickly afterwards so we turned it up again.

For those readers wondering 'what's with the lack of poo metaphors in recent blog updates?' well thankfully his diarrhea has settled down over the past few days. Late this evening however, as we were preparing Max for sleep, we discovered as we went to change his nappy that not only had he filled his nappy to the brim with ones and twos, its contents had decided to do a little adhoc decorating of the back of his tshirt and his sheets. Cue quick bath and full linen change. We wound down with a game of improvised basketball, using a toy boulder as the ball and a toy truck as the basket. And that's how the weekend ended. Tomorrow (Monday) marks the two week anniversary of Max's transplant. Hopefully he has turned the corner and it won't be too much longer before we are out of here.

Below are the latest statistics.

Blood Counts:

White cell count: 1.5 (6.0-17.0)
Neutrophils:  0.69 (1.5-8.5)
Haemoglobin: 103 (110-140) *
Platelets: Not Available (150-400) *

The Ladder:

1 - Hawthorn

2 through 16 - the rest

Thankyous:

• Mawa for the game.

Cheers,

Tim

A good start to the weekend (Day +12)

Just a quick update today. Max had another good day after a bit of a rough night's sleep.  He spent the day much like he would if at home indoors on a Saturday: drawing, reading and watching the footy. Thanks to Oma and Opa, Bee and I were able to get away for a shared dinner and a movie back at Ronald McDonald house.

His blood results continue to indicate a gradual recovery of his immune system. Below are his latest counts:

White cell count: 1.0 (6.0-17.0)
Neutrophils:  0.55 (1.5-8.5)
Haemoglobin: 107 (110-140) *
Platelets: 21 (150-400) *

In other results:

Hawthorn 17.15.117 def. Melbourne 8.13.61


Thankyous:

• To the MG Gang for their wonderful collage of photos, artwork and messages. And thanks to Vanessa for bringing them in and for taking Bee out for a coffee.
• To Oma for the pop up book.

Cheers,

Tim
.

That's what I'm talking about! (Day +11)

Max was in a lot of pain last night, why does it always seem that Max has his rough nights when I’m on duty?? I had another teary moment last night – feeling so helpless having to listen to my precious little boy groaning in pain throughout the night and not being able to do a thing about it. Consequently the morphine was increased again today – I much prefer seeing a happy, but groggy Max as opposed to a silent groaning Max.

There were a number of magnificent bowel eruptions during the night – not so much of a chocolate fountain, instead due to the mucositis, it was more like the sauce on a sticky date pudding (hmmm pardon the pun there…). As a result, my fab night nurse suggested that Max wear not just one nappy – but also an adult nappy to catch any escaping splodges….it was quite a sight….Sumo Max – we had to laugh!

We have recently come to discover a wonder drug – Lignocane-Xylocaine a topical local anaesthetic used for relief of pain associated with irritated or inflamed mucous membranes of the mouth, throat, and upper gastrointestinal tract. Within a couple of minutes of being squirted into Max’s mouth – voi la! – Max is speaking!




Some other pretty awesome news today…..we learned that Max’s White Cell Count (WCC) has risen to 0.6 (and his neutrophil count – one type of White Cell – was 0.16). This means that his immune system has now restarted!  We have been told that this is likely to fluctuate for some time, go back to zero for a day or so, but slowly trend upwards and it will be a while before they reach 'normal' levels. For example, for him to be considered not severely neutropenic his neutrophil count needs to be above 0.5 for three consecutive days. Each day we will now include his blood count numbers along with the normal ranges to give you an indication of what we're aiming for.

White cell count: 0.6 (6.0-17.0)
Neutrophils:  0.17 (1.5-8.5)
Haemoglobin: 80 (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

• To the many blog comments, personal emails and text messages received - we love getting them so much.

• To Aunty Jo, Uncle Andy, Poppy and Digby for the PJ’s and clothes – despite the kafuffle in getting them to the posting stage – they arrived safely and unharmed! 

• To Lyndal, Saleem and Jordan for the assortment of goodies – all super choices.

• We also had a surprise visit from Mapa this morning which made Max oh so happy!

Tim's night tonight - I'm sure it'll be a 'boring' one!
Bee x

Double figures (Day +10)

It was another quiet day for Max. The mucositis has taken its toll on his demeanour; he struggled to talk a lot and didn't have a lot of energy for playing with toys or doing puzzles. He had quite a few coughing fits which caused him a lot of distress. Between boughts of coughing he was pretty content to just doze. All that said, his vital signs are good; his temperature has come down (no longer febrile), his blood pressure is good (mean arterial pressure hovering in the 70's) and his pulse not too high (between 100 & 140 bpms). They still haven't determined the source of his fever; nothing has shown up in the blood tests (nothing has grown in the cultures), x-rays (one on Monday and one today - all clear) or ultrasound (done today - no excess fluid anywhere except for, funnily enough, the bladder - lasix to the rescue. They also looked at his liver and kidneys and they appeared in good shape). Given that his temperature has dropped, the current mix of antibiotics and now anti-fungal medication (as of Wednesday) seem to be doing something good. His respiration rate is still high but given his good vital signs we are hopeful that it is not a symptom of something more ominous. We continue to be encouraged by the fact that we were told that Max would be at at his sickest from around Day +7 until is white cell counts began to rise and that what he his currently going through is all par for the course.

We did have some special visitors pop by today. Max was very excited, despite his condition, to see his cousins Griffin and Evie drop by and wave hello (albeit with two glass doors and room between them). It was both a sad and happy reminder of how much of a social animal Max is and how much he loves his family. After all of this is done we are going to have one hell of a celebration to make up for lost time. Max's favourite social worker also dropped by to read a story and Mawa popped in to let Bee and I have dinner together.

 

Thankyous:

• Mawa for the clippers (finally - i have now joined Max in baldness)
• Princess Rainbow (aka Jimmy's cousin Laura) and Chop from Captain Starlight for the Big Ted.

Cheers,

Tim

Boring, but not so good (Day +9)

Today Max was definately not his usual self - he was rather quiet (allowing me to talk to Tim with no complaints!) and in a fair amount of pain due to the mucositis in his mouth / gastro tract. Mucositis is painful inflammation and ulceration of the mucos membranes caused by the chemo. This morning I woke to Max coughing and gaging repeatedly, I imagine he was trying to get rid of the mucous in his throat.

Tim and I have been extremely vigilant in keeping up with Max's mouth care, despite Max's best efforts to resist this care  - we use a foam toothbrush-like device to swish his mouth with a 'medical-strength industrial-based revolting-tasting' mouthwash and 30 minutes later (again under duress) must inject an antifungal agent into Max's mouth. This regime is to be done 4 times a day. We've been told that these measures do not prevent mucositis, but aim to keep the ulcers clean to stop bacteria from entering the exposed sites.

As for the other end...this is why the salts baths are so important - not to prevent the sores, but to keep it as best as possible, clean and infection free.

During Max's few 'up' moments, he spent time with a Play Therapist painting some pretty pictures which are blue-tac'd to his wall.

Max is still having spikes in his temperature, but not as bad as Mondays 40+C efforts. He also still has a high breathing rate, which at this point cannot be explained. A few theories have been mentioned:

• Fluid on the lungs - we may have a visit from an X-Ray machine (and a person to do the x-ray!) overnight to check this out,
• Max  is also a little 'fluid positive'. If Max has too much fluid in his bladder, this is may be pushing up on his lungs causing the laboured breathing, or
• Due to his throat mucositis and pain, Max may be taking more shallow breaths as a way of avoiding pain......

Good news is that his pulse rate and oxygen levels are good....and as you can see right now, he is sleeping well. It's Tims night on duty tonight......hope it's a boring one!

Thankyous to:
Inge, Erich, Thomas and Klaus for the card and gift - Max will put it to good use!
Si and Lib for the cool PJ's.
Aunty Judith for the touching card.
Granny Pat and Gramps for the delicious cake.
Oma and Opa for looking after Max and allowing Tim and I to have some dinner together.

Boring days are good days (Day +8)

After an anxiety ridden Monday, which included an ominous visit from a doctor from ICU (Intensive Care Unit) to prepare us for a possible trip there if Max's fever didn't settle down, we were blessed today with an uneventful Tuesday. The day started with a bang, quite literally, with Max gifting us a bulging and leaky nappy containing the remants of a dawn explosion. More importantly, Max awoke a much happier boy with his temperature and heart rate having maintained their stable levels throughout the night. The doctors visited in the morning and were very happy with his numbers and his disposition which in turn was a great relief to Bee and I. 

 

Max spent most of the day relaxing watching TV, reading books and occasionally offering a word of advice to his parents. He was certainly a lot more with it today; when reading a magazine with Bee he recognised a photo of Susan Kennedy, exclaiming 'Neighbours' (FYI- Susan Kennedy is a character on long running soap opera and favorite show of Bee 'Neighbours') . As for Bee and I, it was a far less stressful day than yesterday. With Max happier and making fewer poo explosions, were able to catchup on some rest and enjoy some of the snacks they offer to parents on the ward, including some delicious toasted fruit breadwith banana and honey. We pray for more days like these.

Thankyous:

For Meals: Peter & Sandra, Damien & Krys, Jono & Karen, Mawa (Christine), Oma (Julie)

Krys & Damien - for the cool books. Max will be a genius by the time he leaves here.

John & Lyndal - for the thoughtful gift.

Pierre & Cat - for the moofies.

Cheers,


Tim

 

 

Back on the Rollercoaster (Day +7)

Max continued to be bothered throughout the day by high temperatures and showed little of the good form of last week. A number of doctors have been through the room to have a look at Max and the prevailing consensus is that he probably does have an infection of some sort. This is a very common occurence in patients post transplant given the weakened state of the immune system and whilst it is a concern, it is certainly not a suprise to us. As one doctor put it, usually medicine is about taking a sick person and making them healthy where as a bone marrow transplant involves making a relatively healthy person sick first and then making them healthy.

They are treating Max by adding and changing the mix of antibiotics he is on to hopefully knock whatever ever bug might be causing the fever on its head. He had a chest X ray today and that came back clear so that's a good sign at least in the short term that his lungs are holding up.They are also 'flushing' his body to aid his circulation and giving him panadol every 6 hours to help knock down his temperature. We have decided to drop back the feeds to 5ml an hour to slow down the 'chocolate fountain' and lower his pain relief medication as we want him to be as alert as possible.

The good news is that by late Monday evening the changes to his treatment have had an effect. His temperature is down from over 40C (highest 40.7C) to around 38.5C, his heart rate is down from around 190 bpm to a far more relaxing 140 bpm and his blood pressure numbers have been high, but relatively good throughout the day. He was even well enough to demand the undivided attention of Bee, ordering 'Mummy, don't talk to Daddy'. As we have learnt the next few weeks will be a rollercoaster ride of watching these kpi's and others go up and down but it's comforting to see that Max has responded well to today's challenges.

Cheers,

Tim

Away with the pixies (Day +6, +7)

Well they were right...Day +7 has now arrived and the downhill slope has started. It's amazing how one moment everything is fine and the next it turns to sh#t! (Speaking of which Max's chocolate fountain is still as genourous as ever!) At 8pm last night Max's temperature was at 37.4C, by 9pm it had jumped to 39.6C and it has hovered around the high 39's all night. That's how quickly things can change. Panadol hasn't worked, he has been febrile (had the shivers/shakes) and extremely laboured breathing all night. His head and body are SO hot to touch, but his hands are ice cold. Having to listen to his little body fighting to breathe is such a terrible thing.

Due to his extreme teperatures, Max has been hallucinating, coming up with all sorts of weird and wonderful utterances...."PICNIC TIME!"..."must have more pieces in the middle"...."get the BIG box".

Blood cultures were taken during the night, he's been put onto another strong antibiotic (that's now three he's on), he'll have a chest x-ray today....just to try to work out what's causing the high temps. It could be viral or bacterial, or an infection in his "Mr Hose"....as yet we don't know. Having an infection is one thing, but having an infection when you have ZERO immune system (defenses) as does Max....is Bad!!!

I'll keep you posted.....

Thankyous:
To Dad (Opa) for taking me out to dinner last night and Mum (Oma) for looking after Max.
ToLou and Jordan for accompanying Tim to the "Pixies" concert last night - he had a great time.
Lukily we could have this little break before this temperature business began.
To last nights superb night nurse - Natalia. Amidst all of the looking after Max she decided at 5am to make me a cup of tea, just the way I like it - Thankyou!

It's now 8am - think I might try to have a snooze....

Another good day (Day +5)

Just another quick update. Max had another good day today. The highlight for the day would be getting Max to take a bath without kicking up a fuss, not just once but twice! It might not sound like much of a highlight, but believe me, trying to wrangle him into a bath since we've been in hospital has been next to impossible. A red and a green Dora the Explorer sticker (our highest honour awarded in room T2) to Bee for her efforts in coaxing Max to not only get into the bath but also convincing him to sit down of his own accord. 

It wasn't all smooth sailing however. After breaking some kind of record for the highest number of cotton balls used in a single nappy change, we've decided to turn down the feeds delivered by the gastric tube. Hopefully this slows down the chocolate fondant like flow at the other end. In the short term it seems to have had the desired effect. More challenges await us in the weeks ahead but for now everything is under control.

Thankyous:

To Jamie and Jill for the cool books

Cheers,

Tim

Hair Today, Gone Tonight (Day +4)

Just another quick update from Team Max. We had another good day today. Max was once again happy to wile away the hours chilling out with his assortment of books, cars and drawings. 

Over the past two days we noticed that his hair was starting to fall out, so today decisive action was taken and a haircut of sorts was given. As the hospital wouldn’t give me a pair of clippers, I spent an hour or so passing my hands through Max’s hair with the hair easily coming away from his scalp.....starting with a mohawk....progressing to the final masterpiece... 

Here are the results:

As you can see, Max is still as handsome as ever. He doesn't seem to be fazed by his lack of hair in the slightest and actually enjoyed me aiding in the hair removal process. We will enjoy this new look of Max's for around 6 months, until his new hair will start to grow.Tim has assured me that he will join Max in the 'buff' head department by shaving his head...I look forward to seeing that!

We learnt today that Max's neutrophil and white blood counts are officially down to zero. Although this is scary and we have to make sure we are extremely vigilant in keeping those pesky germs away....it's good to know that from here on in the only way is up!

Thankyou to Mapa for taking Tim and I out for a delicious dinner tonight, and to Mawa for looking after our little champion whist we were away.

All Quiet on the Western Front (Day +3)

Happily there’s not a lot to report. After an uneventful night, the Max that we know and love decided to make an appearance today. He spent most of the day happily drawing pictures, doing puzzles, reading books and watching the telly. The day’s major drama revolved around trying to get him to sit in the bath. We are still concerned about the state of his skin around his backside and have been told that salt baths, twice a day, are the best way to accelerate the healing process. After much struggling and tears we finally were able to get him to immerse himself in the water. Great Success!

Thankyous to: 

Billy & Carly for your extremely thoughtful gifts. Max will wear his personalized singlet with pride.

Aunty Judith for your beautiful card.

Cheers,

Tim

Into the unknown (Day +2)

We are now into day 2 of Max's post transplant journey. The conditioning regime of chemo and ATG have all but wiped out his existing bone marrow and immune function. Now the wait is on for the infused cord blood stem cells to find their way, seemingly by magic, into Max's bones and reboot his immune system. To put it into an analogy, pre-transplant (conditioning phase) was like driving on a bumpy road sometimes driving over little stones and other times having to treck over huge boulders. Transplant Day we drove off a cliff - and we are now falling, we don't know when we are going to hit the ground, but when we do, we will be back on the road to recovery. We have been told that Day +7 to Day +12 are the worst (hitting the ground) from then slowly Max's new cells will find their way to their new home and will be dividing rapidly and doing their job. In this photo you can see a little of the welts which covered Max's body. They are now on the decline...

Yesterday we had a horrid Day. From 9.30am Max began screaming in pain.....ALL DAY! Tim likened it to that episode of the Simpsons where Homer wouldn't stop screaming after a visit to the hypnotist. I found this so emotionally difficult as Tim wanted to help sooth Max, but all Max wanted was me. I felt terrible and helpless on so many levels....what do you do? I managed to duck out of the room to have a quick bite of dinner. Upon return Tim stated that within the last couple of minutes he had successfully quietened Max by recounting all the wonderful things they will be doing together once we are all home again. Naturally once Max spied that I was in the room again, the screaming restarted and Daddy was told to "GO AWAY... MUMMY HERE, MUMMY MUMMY MUMMY!!!" 

Cathetar came out yesterday! The relief for us all was shortlived as we were told (after an ultra sound - the machine was brought into the room) that Max was carrying a large amount of urine in his bladder. If it doesn't come out the cathetar would need to be re-inserted....NOOOOOOooooooo. One nurse suggested that a warm bath would help. Ha! Getting Max into a bath? But I thought I'd much prefer to try it, than to have to put the cathetar back in. So Tim and I set up the bath, undressed Max, unplugged all the SEVEN(!) power cords of his IV pole and carried him into the bathroom. As soon as he spotted the bath the piercing shreaking and total body thrashing began. I hate looking at Max's eyes during these times as they have the look of complete and utter fear. As expected we were not successful in getting him to sit, stand of even come close to the water.....however the sheer fear and terror he must have been experiencing set off the waterworks.....wee everywhere! Woo Hoo!! I have never been more happy to be soaked in urine! Well Done my brave wonderful Max!!! I love you so much it hurts!!!!

I decided that I had to have a sleep last night so, Tim was on night duty. Apparently Max slept well....Thank goodness. He continues to sleep soundly now....as you can see.

Thankyous

Marg, John and family for the fantastic book and toy. You cannot go wrong with 'Thomas' or Tonka.

Ian and Elsa for the wonderful musical truck

Pip (Cus) for the display boards - they are awesome! x

Day 0 - part 2 (Post Transplant)

(As Max and Bee rest from what has been a massive day, Tim once again picks up the story)

At approximately 2:15 pm today Max began receiving his 'bone marrow' transplant of donated blood stem cells. Ever since Max was diagnosed with WAS two years ago we have known that he would require a Bone Marrow Transplant to cure his condition. A ‘Bone Marrow Transplant’ sure sounded scary and the more we learnt about it, well, the scarier the idea became. We also learnt that the transplant itself is probably the simplest part in the whole Bone Marrow Transplant treatment process. There’s no actual surgery, like say in an organ transplant. It’s basically just a blood transfusion, but instead of receiving red blood cells or platelets, you’re receiving blood stem cells. All that said, it was an extremely emotional and surreal experience for us today watching the donor blood cells make their way slowly down a line from a small 115 ml bag attached to Max’s drip stand, towards Mr Hose and then finally into Max. 

By about 3:15 pm the transplant was complete. Max, obviously not realising the significance of the event, decided to sleep through it. He spent the rest of the day being closely monitored by nurses for changes in heart rate and blood pressure, and as side effects of the transplant, excreting a lovely port colored urine (due to passing of an additive in the donated blood stem cells) and emitting a feint oyster like smell (due to preservative in the donated blood stem cells) . He maintained his grumpy demeanour of the past few days but a quick visit from Mawa (my mum) raised his spirits. 

After thinking that we had kicked his backside troubles, a number of sizeable blisters have decided to pitch camp in the area. According to Max's main Doc, we will have to pay very close attention to these in the coming days. The Doc also observed that his welts, a side effect of the ATG and, which cover about half his body, are of a standard worthy of being photographed for posterity. Fortunately, the welts do not cause Max any discomfort and they should subside in the coming days. 

With the milestone of the transplant past, it's on to the next, most critical, stage of Max's treatment: Engraftment. We will endeavour to keep you informed of Max's progress.

Some more thanks are in order:

- To Mum for the meal tonight (the envy of others in the parent's dining room) and to Mum and Dad for the lovely gifts

- To Lou, Jordan and (not so much a baby anymore) Baby Jack for the very, very well selected gifts and food

- To Sandra and Peter for the gift and card. Max is a massive fan of both letters and numbers so it will be well appreciated

- To All for your lovely prayers, messages, cards, letters and thoughts. Your support is very important to Max, Bee and myself..

And finally I have a job appointment to announce: MC Finch has been appointed as Officer in Charge of Home and Garden Maintenance (Box Hill South) effective immediately. 

Cheers,

Tim

Day 0 (pre-transplant)

Well I think I spoke too soon about the improvement in Max’s bottom. Last night I noticed the first 2 blisters. We need to increase his salt baths to twice daily (and the morphene). One nurse said it is quite likely that Max is all ulcerated on the inside too, which is what is causing him so much pain each time he needs to poo. These are all things that we have been told to expect, but you can never really prepare for it when it actually happens.

The type of chemo used for bone marrow transplants (different types are used for different purposes) affect all the fast growing cells – hair, nails, mouth, gut and bottom, this is why Max’s hair will fall out, his nails will be affected, and he will get severe ulceration in his mouth and bottom. Mouth care and bottom care are therefore paramount. Max has not eaten or drunk for the past week or so, but incase he feels like something, he is on what’s called a ‘Clean Diet’ (food with no or minimal possibility of bacteria and untouched by humans). We have all been wearing beautiful white gowns since admission, but as Max’s counts approach zero we will all be required to wear masks aswell – I already feel like I’m part of Space Odyssey 2010!.

Around the time of the stem cell infusion today (time change - now at around 2pm), nurses will also change Max’s Hickman line dressing. There is still bleeding coming from the site more than 2 weeks after the surgery! (all due to Max’s low platelet counts).

Will update again later…

Tired and emotional (D-2/D-1)

As most of you know I tend to be quite stoic and hide my emotions successfully, however on Friday I was extremely emotional – crying often. Most likely my extreme exhaustion play a role with this weakness. I have always managed not to cry in front of Max, but on this particular day - having to clean Max’s bottom so often and having him screaming with pain whilst I was doing so was just too much to bear. Even the morphine boosters were not easing his pain. It really was a case of being cruel to be kind. If any poo was to get into his system via the open wounds on his rear, this would result in a sure case of serious infection, particularly considering his immune functioning is on the decline. Thankfully, by yesterday evening Max’s behind was looking SO much better, despite still having many bouts of diarrhoea thru the day/night. I am now quite the ‘Master bum cleaner’ and getting very good and quick at changing him. Max has not been wearing nappies since Thurs, instead just sitting/lying on a ‘bluey’ (a water proof sheet). Once I realize he has had a motion, I get into action: Gloves on (as poo - and wee for that matter - are toxic from the chemo), new ‘bluey’ laid out, open packet of cotton balls, soak them with saline, lift up his bottom, clean gently and put used cotton balls in a bag – along with the soiled ‘bluey’, re-lay fresh ‘bluey’, puff some special stomahesive powder on open wound areas then smear a extra thick layer of zinc based cream over his entire buttock region……then wait around 15 -30 minutes to repeat the whole process again!!! At least now he is not screaming and thrashing about in pain whist I have to do this!
As a reaction to the ATG (a drug made from horse or rabbit serum used as part of the conditioning protocol to help wipe out the bits of Max’s immune system which the chemo has missed), Max has had high fevers (39C+) and welts covering his entire body. These effects are all part of severe allergic reactions which are expected from this drug. (Max had his last dose of ATG yesterday - Saturday). Max has generally coped very well with all of these reactions, however early this morning at around 3am, his blood pressure fell, had difficulty breathing, and was difficult to rouse. The night registrar was paged to check on Max as it was feared that Max was going into anaphylactic shock. The Dr called the ICU (Intensive Care Unit) for instruction as to whether Max should be given a shot of adrenaline. During all this time my heart was in my throat! After an hour or so, Max’s obs were more steady and he just needed a shot of steroids to reduce the reaction. Of course Max was not interesting in sleeping after this – so once again I did not sleep last night. Tim is on night duty tonight….boy am I looking forward to a good nights sleep!

Yesterday and today Max has been very lethargic, just sleeping and watching DVD’s (3 of the 6 DVD’s Pip bought for Max – Thanx Cus!!!!)

He is also very pale and definitely not himself. I also find it very difficult not seeing him smile (none since Thursday at least). He is currently receiving a red blood cell transfusion, which should help with his paleness and lethargy. He has also received 4 platelet transfusions.

It’s the BIG day tomorrow (Day 0). Max will receive his new stem cells somewhere between 10am and 12pm. I’m off now to meet Mum and Dad at Ronald Mc House who are bringing a HUGE basket of fruit/cakes and goodies from Toni and Knutti – Thank you in advance!!!

Hope to update some more with photos later today, xx

Getting there... (Day -3)

(It's Tim again, chipping in to give Bee another break from blog duties)

Last night, given Max’s poo issues we both decided to stay the night. Max did sleep most of the night although he did wake himself up when he needed to be changed which turned out to be a regular occurrence.



This morning Max was seen to by the Stoma nurse who had some good advice on treating the deteriorating skin on Max’s backside. Unfortunately, Bianca and the nurse could not convince him to take a salt bath, which are apparently supposed to help a lot with the healing of broken down skin. We'll have another crack at it tomorrow.


Today was very similar to yesterday, periods of calm interspersed with harrowing exercises in cleaning Max’s backside. Max is on a Morphine drip to help ease his pain, which the nurses can give a little boost to prior to changing his ‘bluey’. Even with the drugs, it is still a very painful undertaking for Max. I cannot really comprehend the level of pain that he must be in, and yet, the strong little boy that he is, he very quickly settles himself down within a couple of minutes and gets back to watching Dora as if nothing had happened.


Speaking of strong, Bianca has put in a mighty effort this past week. With me being not 100% and still at work, she has taken on the lion’s share of looking after and spending time with Max. I think that the relative ease in which Max has acclimitised to life in isolation is largely due to her awesome mothering skills and incredible endurance. And not only that, she has also maintained this first class blog! She truly is an amazing woman. Now that I am on leave from work, hopefully I can give her a bit of a break before we head into the actual transplant.

We have a few big days coming up. We’ll update you on the road ahead over the weekend.

Before I sign out, some thank yous are called for:


• To Aunty Cheryle for the lovely, just cooked meal and other goodies.


• To Cus (Pip) for the selection of DVDs. All winners, no filler.


• To Benjamin Morley (with a little help from his folks Bec and Dave) for the Dr Suess game

Poo galore (Day -4)

Just a quick update today, as I have not a moments rest.
Tuesday night Tim stayed with Max - they apparently had a great night together. At 7.30am I relieved Tim of his duties only to find both of them sleeping soundly. When I checked more closely on Max he had done a massive runny poo which soaked through all clothes, bed and into his lines!!! We had to bath him (which he hated of course) and have all his lines changed. This was the first of....well I stopped counting after 20 lots of poos. It doesn't help that the chemo affected poo has started eating away at his bottom, so poo is extemely painful when it touches his skin. Also changing his nappy (literally every 30 minutes) we have a screaming little man "No mummy no, sore so sore". I have to have nurses help me hold him down each time. So terribly unpleasant for us both. Unfortunately there is nothing they can do, but pain management....and it's only going to get worse. Blisters will emerge as the skin breaks down further.....I so hate having to change him, clean him and cream him all the time. Morphene will be ordered shortly (goes to show how much it can hurt!). Vomiting is a breeze compared to this.

Vomit count: 2
Diarrhoea: 20+ and counting....

Cathetar went in yesterday. Horrible horrible horrible. One Dr had 2 failed attempts. Another Dr had 2 failed attempts, but once SIX of us (2 Dr's, 2 nurses, distraction therapist and myself) were able to pin him down amidst his piercing shreeking, we were finally successful. We have since discovered that Midazolam (happy, relaxing drug) does not work for Max......and there is nothing else to try. CRAP!

ATG starts at 3pm this arvo. This is a serious drug, which runs over 6 hours (for 4 days) and Max has to be monitered extremely closely with obs taken every 10 minutes. I've been told Max will really start feeling poorly with this. High temperatures, shaking fits, severe allergic reactions, welts, blood pressure problems, breathing difficulties, and rashes.....along with the vomiting and constant diarrhoea from the other drugs......we are in for a real rollercoaster ride over the next few days (at least).

We have received some fantastic presents which has really cheered Max up:
Lissy and Leigh - the laminated family photos are so wonderful, really spruses up our room. Along with the cool cars!
Yvonne - transformers here we come! Max has mastered them already and loves them so!
Aunty Jude (Judah) and John and Heather beautiful cards which are displayed on the wall!

May have forgotten to mention some things, but as you can imagine no sleep has turned my memory/brain to a gooey mush......oh must dash another poo has reared its ugly head!

Fairly uneventful…I like these days! (Day -6)

Mr Nose nearly came out last night (it got pulled out about 15 cm), not a nice moment – thankfully it was caught in time before it fully came out so it didn’t have to be completely re-done. The feeling of pushing the 15cm tube back down his nose and throat again was still not a pleasant experience.Consequently it had to be redressed which was also not fun.

Max had his last dose of busulfan this morning (oral chemo through his nasal gastric tube). From tomorrow Max will start on the hard core chemo intravenously (from Day -5 to Day – 2). We’ve been told that Max will experience progressively worse nausea and vomiting up until Day -2 (Saturday) or Day 0 (Monday). Day -1 (Sunday) will be a drug free day, before the stem cell (cord blood) transplant occurs (Day 0). We’ve been told that we should notice hair loss within a few days of starting the intravenous chemo. As a result we’ve been advised to shave Max’s head before this happens, as many children tend to freak out when they find clumps of their hair coming out.

Vomit count today: 1.
At the first sight of breakfast today, Max proceeded to vomit. He settled very well afterwards so that was great. Hopefully he is that good after all his future vomiting moments. He only ate 2 dry biscuits and 1/4 cheese sandwich in total today. So intravenous feeds were increased to a maximum level. He spends most days playing with his cars, doing jigsaw puzzles, playing memory on my phone....and of course watching Dora over and over.....

Today I also met with the play and music therapists. Max had a ball jiggling away, especially with the Music lady…so much so he fell asleep part way through his arvo snack.

My back is so sore! There is no parent bed in here, just a window bench seat which I have tried to make up as a bed, but it’s definitely no deluxe bedding experience. Tim will stay the night with Max tonight so that I can have a good sleep (Good luck and sleep well my two honeies xx).

Tomorrow the nurses will insert a catheter into Max. So I guess it’s time for another name….. “Mr Pee Pee”!? (I think I’ll have to start up a ‘Mr Men’ series of books for Hospital insertable gadgets!?!?!) I’m really worried about this procedure. Given what we went through with inserting “Mr Nose” – which is a far less traumatic and painful process – I can only imagine this is going to be a shocker! (and I sure hope he doesn’t try to pull out that one OUCH!! On the up side; it will be great not having to worry about changing Max’s nappies every couple of hours…..woo hoo! (He wet through clothes and bed twice again today).

More Thankyous!
Uncle Jono, Aunty Karen, Griff and Evie for the package of Dora bits and bobs! Max LOVED it! To Aunty Jo for the mountain of food, books and trinkets….Tim is bringing some back to the hospital for dinner tonight…looking forward to it! And once I get back to the room later tonight, I’ll be feasting on Granny Pat’s cookies…yummy yummy!! xx

Better today (Day -7).

Not too many happenings today, which is good.

However, on Friday during Max’s vomiting marathon, I noticed that one of Mr Hose’s lines had become unattached. This is potentially disastrous, as if any germs are to get in the line, they have direct access to the main arteries of the heart. I reattached the lines quickly and buzzed for the nurses as I had grave fears that some of Max’s vomit may have touched the open line. They took blood cultures from the line and sent them off immediately to be tested over 48 hours to see if any cultures were to grow. Well, guess what! I found out today that bacteria did enter the line, so Max is now on some heavy duty antibiotics (in addition to the mountain of other meds). All we can do is hope that he will be ok. I am now super cautious any time the nurses need to take bloods or give meds to Max, that they reattach the lines securely. Also during Max’s more feisty moments, it is not uncommon (so I have been told) that the lines can come undone.

Max’s Mr Hose has been bleeding again, due to a combination of his mad-man antics and the fact that his platelets are so low. He has been give four platelet transfusions since the Hickman line was inserted but still it is causing a bit of grief. Max appetite has also begun to subside, so he has now begun intravenous feeds through his Mr Nose. Overall however, he has been in good spirits today.

On another good note, we found out today that Tim and I have a place in the isolation room at Ronald McDonald House (directly over the road from the hospital). We had a look at it today – pleasantly surprised. It is a large space containing three sections, a bedroom with three single beds, a lounge room/kitchenette and a bathroom. I went there today and had a shower and an hour snooze while my awesome Mum stayed with Max (xoxox).

Now to some thankyous
I want to thank everyone who has been leaving such lovely messages on this blog – they are so nice to read your support is greatly appreciated. We will be printing out this entire blog including the comments so Max can read when he is older. So please keep those comments coming.

Also thank you Eph for the beautiful dinners you dropped off to Tim this morning, you are a legend! Also to Heidi and Toni for the great presents for Max! Just on that, some of you have asked for an address of where to send some things for Max. Our address is:

Maxwell Finch
Isolation Unit T2
Oncology Ward Level 6
Royal Children’s Hospital
Flemington Rd
Parkville VIC 3052.

Max has now fallen asleep with his garage of cars, buses and aeroplane (courtesy of Oma – my Mum). I’ll change his nappy again now, then again at around 3am, as over the last few nights he has been soaking through his pants and sheets due to the loads of fluids he’s getting through his IV. Hopefully he will be able to sleep through the night if I change them often. Eyes heavy, must sleep.........

xx

Tough start (Day -10 and Day -9)

Well I wish I could say it’s been a smooth start to things, but unfortunately I can’t.

Max had a bad night on Thursday. He was awake every hour until 3am – when he decided that was enough of sleeping (which meant neither of us slept from then on). So we were both already worn out to start off Friday’s events.

Chemo started on Friday morning. The first lot are somewhat milder drugs given in tablet form – but given Max’s age they are dissolved and mixed with flavoured syrup. The first dose wasn’t taken too well by Max so it was decide that a Nasal Gastric Tube should be inserted. This is a long tube that goes in the nose, down the back of his throat and down to the stomach. In a way it’s great to have been done, as all of Max’s oral med’s can now be given through this tube “Mr Nose” – so original with my naming of these things aren’t I?

The process of inserting this line was a horrible experience however. They gave Max some Midazolam (happy drug) but he still screamed throughout and had to be held down by four of us. Such a heart wrenching thing to have to do to your child – I just hope he won’t remember any of these nasty things that are happening to him.

Not long after the tube was inserted, Max proceeded to vomit 4 times – each time completely soaking his bed or me. Still not sure if it was a super early reaction to the chemo, or whether it was due to him eating too soon after having the Midazolam for the tube insertion. Either way, it was great preparation for the next several weeks. One of the nurses gave me a good suggestion to keep in mind: whenever Max vomits we should hold firmly onto his nasal tube otherwise it is likely to be vomited out. And if that happens we would have to go through the whole process of inserting it again – NO THANK YOU VERY MUCH!!! As a result, with even the slightest hint of a gag, I am super woman bounding over drip machines and power cords to hold onto that “Mr Nose”!

Needless to say Friday was an exhausting day, and I have to admit I really struggled. But that wasn’t the end of it. To top of this marvellous day, Tim called me after work claiming that his throat was really sore – and to cut a long story short, he has been prescribed antibiotics and advised not to be around us till at least Tuesday. Great! I’m already exhausted just 2 days in….what timing! Consequently, we arranged for my Mum to come in to support me today (Saturday) – so I was able to have a bit of a break (ie. have a shower and go to the toilet!). Thank you Mum (and Dad for driving her in). I Love you both enormously!! I should mention, there is a bathroom in our room, however this is ONLY for Max’s use. Luckily there are communal showers not too far away, so parents can refresh themselves and smell pretty!

Anyhow Tim has been able to arrange internet access for me so I am now able to continue with updates from our room T2. As I’m typing away, Max is now peacefully sleeping with his new police car, and amongst the continual beeps and boings from the machines…..and I plan to do the same! Goodnight all!

Return to the Fishbowl (Day -11)

(Today Tim gives Bee a break from Blog duties and picks up the story)

After are a few days R & R at home we have returned to life in the Transplant Suite at the RCH, or ‘fishbowl’ as it’s less scarily referred to. Tomorrow, Max will begin his first round of chemotherapy and in 11 days time (hence Day -11), Max will receive his cord blood transplant. Bee and I are simultaneously terrified and emboldened; terrified by what Max’s little body is about to go through but emboldened by the courage and ease with which he has handled all his treatments so far. Hopefully he will kick chemo’s ass and sail on through to the transplant in tip top form.

Following the success of Max’s Hickman Line placement, we left the hospital on Sunday and returned home for a short reprieve from hospital living. Having had a taste of life in isolation, it was a good chance to psych ourselves up for Max’s extended stay. Hopefully it wasn’t too cruel on Max and that he isn’t expecting to be heading home again in a couple of days.

Max has got used to life with Mr Hose very quickly. That he now has a plastic tube sticking out of his chest hasn’t bothered him in the slightest. We’d heard all sorts of horror stories of kids (and adults for that matter) getting fed up with them and ripping them out, or of them becoming dislodged internally and causing all sorts of issues. No such problems for Max, luckily. Mr Hose has spent most of his time tucked away safely in a pocket sewn into Max’s singlet. Indeed, special props must be given to Bee and her awesome sewing skills for her tailored Mr Hose singlets, complete with satin lined pockets to accommodate in style and comfort your very own Hickman line.

We arrived back at the Hospital today (Thursday) and spent the afternoon settling back into life in room T2. We caught up with various doctors, nurses and our social worker to discuss Max’s upcoming treatment. Max’s dressing for his Hickman line was seen to and they decided to clean and re-dress it. Surgeons are usually averse to changing the dressing so soon after surgery as it can disrupt the healing of the wound. However on inspection, these concerns were overridden by the amount of caked on dry blood that was sitting under the dressing. To ensure that Max remained largely still during the redressing, we decided to chill Max out with some ‘Midazolam’ (appears to have the same affect as booze on adults) and some Dora the Explorer. And just on Dora, as annoying as that tubby little kid with the ill fitting t-shirt and bowl for a haircut is, she is proving to be quite the pacifier. With a dazed Max off in a world of talking backpacks and singing maps, the nurses were able to clean and change the dressing with little fuss. They also let slip that word has already got out amongst the nurses of Max’s fondness for brunettes; he is turning out to be an incorrigible flirt.

Max finished the day with some more Dora and the commencement of his daily ‘anti’ drug regime; antibiotics, anti viral drugs, anti fungal drugs, anti seizure drugs, mouth washes and nasal sprays. We are still to work out the best order in which to give them to him; do you start with the nicer tasting ones and work your way through to the disgusting ones, or vice versa, or do you mix it up? Any advice would be appreciated.

"Mr Hose" is in!

The last 3 days have given us a great introduction into what our life will be like for the next while, as we were lucky enough to spend the recovery time of Max’s Hickman line surgery in the same isolation room we will occupy for the transplant process. Thanks for all the name suggestions (Sue – “Alfred” would have been very cute!), however the name “Mr Hose” emerged as the winner! When we woke Max up on Friday morning his first words were “We go see Mr Hose now?”!!!

So we arrived at the hospital at 7am on Friday, completed consent forms, got Max gowned up and waited for his name to be called. Prior to the surgery he was given some ‘happy’ medicine which made him super relaxed…hilarious to see. Will try to upload some footage soon.... 

I was able to go into theatre with him whilst they put him to sleep with strawberry flavoured gas! Once asleep they gave him a platelet transfusion then performed the surgery. All up this took around one hour. Tim and I met with him in recovery and when awake he devoured an icey-pole with 4 bites! He seemed to be ok.

On the way up to the ward however, Max began to get quite agitated. He did not co-operate with the nurses by lying on his trolley, instead he fought his way out of the bed and into my arms. He just wanted to be held. In the process he was tugging at his newly inserted line which consequently started bleeding. Blood was everywhere…on him…on me. It was an awful experience. He was obviously in pain and the sight of blood dripping off him didn’t make it any better. Once we got to his room another platelet transfusion was ordered and given through his new line, and after smashing a ham and cheese sandwich he fell asleep for around 4 hours.

Once awake, he was back to his cheeky old self – flirting with the nurses and demanding undivided attention of us.

I stayed with Max overnight on Friday night. It was a difficult night as he didn’t quite understand that he couldn’t roll around like a mad-man as he would get tangled up in his lines (he was connected to a saline drip). But overall Max was great, the nurses expected that he would require 4 hourly pain relief – but our Max ‘der Starke’ (the strong one) hardly complained at all. I did order Max one dose of Panadol in the evening as he complained a little after I had changed his pants. Only after I ordered it did I realize the reason he complained was because I had got ‘Mr Hose’ tangled up between his legs. Consequently he was a tad uncomfortable - not in pain (Silly Mummy!) He slept well until 4.30am when he woke up crying. But once settled he demanded “Dora the Explorer”. So from around 5am until Tim came back to the hospital at 11am, it was Dora jigsaw puzzles and Dora on TV. To say I was completely sick of Dora is an understatement!...but whatever makes Max happy, we will do it.

On Saturday, Max was unhooked from his drip and was allowed to roam free. By the evening I was exhausted so Tim stayed overnight Saturday with Max so I could get a good sleep (Thanks my spunky!). I returned Sunday morning, and after a number of blood tests revealed that Max’s platelet count was holding, we were allowed to come home! We were sent home with two drugs that Max is required to take twice daily – a general antibiotic to keep him healthy, and an anti-seizure medication (as the chemo is likely to give him seizures). We are back to the hospital again on Tuesday for another platelet check and the dressing on his chest wound changed. Then one more day until admission on Thursday.

 

Check out my handy work on Max’s singlets (“Mr Hose’s” House), satin lined and all!