No news...is just no news (Day +94)

Sorry haven't blogged in so long....not enough time in the day, and on those occasions where there is time we are generally too bl##dy exhausted to think about what to write. I'm going to follow in Tim's footsteps and 'dot-point' the major bits.

On the weekend (12th - 14th June) Max's poo situation hit another low - the worst it had been in a month or so. Max was having severe cramps prior to each motion which is still terribly difficult to watch. I really don't want to jinx things but since last night, the frequency and consistency are looking more normal (whatever that is?!).

His skin also decided to run another course of the extreme rash, itchiness and peeling phases. Yesterday it was decided by the Doc's to once again try adding the other powerful anti-rejection drug Mycophenolate mofetil (MMF) to the mix. As you may recall this was first tried in mid May, but was stopped a day after as Max's rash went ballistic, and they couldn't rule out whether the drug caused the rash, or whether it was just the cycle of the GVHD. This time around, Max's rash had already started to flare, so we are giving it another go. Two days in, his skin is still bad, but we've been told the MMF won't start having an effect for a week or so......we're holding onto our hats. Max does still have terrible stomach cramps - ironically we have been told that a major side affect of the MMF is gastrointestinal problems (cramping and diarrhoea....oh dear!). Needless to say we need to keep a close eye on it.

Max's blood pressure has also been an issue over the last couple of months (all due to the ridiculously large number and volume of meds he is required to take). The renal team are attempting to reduce the number (4) and quantity of these drugs. Depending on today's blood pressure readings, he may only be on three from tomorrow.

Max is truly a star. Despite his obvious pain, poos and skin discomfort, this week he has been the most talkative and chirpy since this whole process began back in February. Tim believes that it is Max's way of telling us that he is alright and for us not to worry. From my point of view, my mood is certainly dependant on his - and each time he whispers to me that he 'loves me .....this much....(whilst stretching out his arms to full length), I am more and more confident that he is doing ok!

The one thing we really need to work on is his walking. Currently....he can't! His legs are so wasted away that even standing for a few seconds is an enormous effort. We are working on it, and the physio visits everyday to make sure we are working on it. I do miss those beautiful chunky muscle legs that Max had...I know they will be back.

So much for my 'dot-point' summary......

Thanks to:

• Max, Rosi and Family for the wonderful Mobil Play toy for Max (it finally arrived after 3 months!!!)

• Bec, Dave and Benji for the early b'day gift for Max

• Trisha and Fam for the gorgeous gift

• Jamie and Jill for the scrumptious munchie hamper and gift

• Marg and John for the Top Gear DVD and book

• Meals from Aunty Cheryle and Aunty Jo

......

• Thank you also for everybody's wishes, cards and gifts for Tim's and my birthday(s) - (Flip that groovy box now houses all Max's cars!!) and a special thanks to Aunty Jo for looking after Max while Tim, myself and our parents went out to dinner all together...what a novelty!