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