Good times for a change (Day +83)

At last, things look like they are on the up. Max's skin has improved significantly with the rash all but receding and the new skin not showing any signs of peeling. Since we decided to stop the wet dressings last week, his mood and energy levels have also improved mightily with the smiles more frequent, the play more often and the demand for 'surprises' (presents) louder. He has even begun openly flirting with the female staff again, demanding hugs from his favourites. As if we needed another reason for wanting to get out of here, we might just have to add 'avoid harassment lawsuit' to the list.

Early this week, the oncology team finally decided to call in the gastroenterology team to get them to look into the poo situtation. The oncologists were concerned that, due to Max's recurring stomach pain and the unrelenting assault on our supply of nappies, the GVHD may also be present in Max's gastrointestinal tract. To find out one way or the other, Max had an endoscopy on Friday (after having fasted for 8 hours, which basically means that for 8 hours straight we had to say no to his demands for saladas and teddy bear biscuits; quite the achievement). The early word from the doctors is that although he looked a little tender, it didn't look too bad. We will get the official results from the biopsies sometime this week. Hopefully they'll suggest that gastro was largely to blame and that they won't have to add another anti rejection treatment to the mix.

Just to complicate the matter of the endoscopy, in the three days between meeting with the Gastroenterologist and when the endoscopy actually happened, Max's poo became noticeably more formed (from stinky vinegary thickshake to lightly mashed potato mixed with spinach). We partially credited this to the stopping of the naso-gastric feeds; bye bye Mr Nose for good we hope. At the time of the meeting, we didn't know when the endoscopy would happen but that Max would be placed on the emergency waiting list and that if his situation improved in the meantime that they could cancel it. As it was too soon to call whether he had truly improved, we went ahead with it. We were nearly to regret this decision as on Friday night his temperature spiked to 38.5 c indicating that he might have caught an infection on his trip to theatre. The temperature quickly returned to normal levels but then on Saturday afternoon, after a fun filled afternoon with Auntie Lou Lou, the diarrhoea returned. This time around, it was a lot less stinky, lacking that distinct rota aroma. On Saturday night we got the results from the blood cultures taken on Friday post procedure and, sure enough, they showed that Max indeed had an infection. We are hoping that the diarrhoea is simply a reaction to the antibiotics and that the infection, having responded to antibiotics in the test cultures, will be quickly sorted out.  We are reassured that apart from the brief jump in temperature, Max has over the weekend been symptom free of an infection.

On the other health front, the couple days R&R and a trip to the doctor's have done Bianca the world of good. She's got the colour back in her face, the twinkle as returned to her eye and her coping powers in dealing with an ill son and a cranky and irritable husband have returned nearly to full strength. She is amazing!

So what else has been happening? Here's a random list of Max facts to bring you up to speed:

* Max's is currently obsessed with the television show Top Gear
* His collection of matchbox / hot wheels cars exceeds 90
* His favourite matchbox cars at the moment are the white porsche convertible, the blue BMW, the 'Number 14' AMG Mercedes and 'Baby Jack's Maserati'
* We all enjoyed a family singalong of 'Big Red Boat' during the music therapist's visit the other day
* Max very much enjoyed chatting over Skype with Aunty Cath, Uncle Jimmy, Mawa and Mapa, all the way from Darwin.
* His current breakfast cereal of choice is Porridge
* He prefers his eggs poached
* At the suggestion he has started going for short rides on a tricycle.
* His weight is back up to 16kgs having dropped to 15 last week.

* Bee now drinks Soy Cappucinos

* Hawthorn is back in the 8

Thankyous:

* Caroline L for the Masterchef quality meal
* Amit, Alexandra, Miriam & Sophie for the very well considered gifts and lovely card.
* Grandpa Max for tidying up our garden and to Granny Pat for the divine biscuits.
* Jamie and Jillian for the amazing basket of goodies and meal.
* Peter & Sandra for the excellent books
* Auntie Lou Lou for the visit, the 'number 14' car and the lend of 'Baby Jacks Maserati'
* Auntie Jo & Uncle Andy for the meal.