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