Still toughing it out (Day +41)

The past few days have been a bit of a mixed bag for Max. He tires very quickly, has not been very talkative and has become very clingy. That said, he's had a lot of fun playing with his play-doh that the play therapist made for him and dropped off on Friday and has enjoyed becoming reacquainted with his Wiggles 'Crocodile Hunter' DVD. And every now and again, from nowhere, he'll let loose with a witty aside just remind us of what a brilliant little champion he is.

As mentioned in the previous blog, Max received some sizeable doses of steroids this week to try and counter the effects of the Graft Versus Host Disease (GVHD), a common complication of Bone Marrow Transplants that Max was diagnosed with last week. Unlike say with an organ transplant where there is a risk that the body can reject the donor organ, with a bone marrow transplant, the opposite is true; the risk is that the donor marrow can reject the recipient's body. To the new bone marrow, or specifically the T cells that the bone marrow produces and which form a core part of the immune system, everything in the recipient's body is foreign. The risk is minimised by firstly sourcing a bone marrow donor (or even better, a cord blood donor) with as close a match as possible to the recipient, and secondly, post transplant, administering drugs such as cyclosporin and prednisolone to suppress the immune response.

The three places they look for GVHD to show up are in the skin, in the gut and in the liver. Max has showed signs of it in both his skin (the rash and itch) and his gut (the poo). The liver, so far, is by all reports ok. As at today, the steroid treatment has appeared to have lessened the symptoms of the GVHD but there still looks to be some way to go before he is out of the woods. He finally pooed again today after a gap of about 36 hours. For those of you who are interested in such things, the poo was of a much thicker consistency than his previous efforts of the week, kind of like a sinewy paste. This is a good sign that his GI / tummy troubles are starting to settle down. As for the skin, he has gradually showed signs of improvement over the past few days, pretty much shedding one complete layer of skin for what appeared to be a less affected layer. He seemed a lot less itchy and was a little more back to himself. Until today that is. Late this afternoon, the rash on his skin flared up again and he was noticeably itchier. Whether this has been triggered by an 'issue' with a 'dose' of cyclosporin, the tapering of the steroids, or the blood transfusion he received this afternoon, we don't know. Hopefully we can get to the bottom of it tomorrow...

As for the infection that appeared Thursday week ago and was the reason that Max was initially readmitted, it has fortunately been a bit of a non event. Max will continue to be administered the antibiotics Gentamicin and Timentin until the end of this week (Thursday or Friday) just to make sure that the infection is completely eradicated and to cover him just in case anything other infection decides to rock up and make itself unwelcome.

Bee and I have had a couple of opportunities to get out of the hospital, with thanks to Peter and Julie. On Friday, we were fortunate enough to attend the wedding of our friends Anthony (Chocko) and Sarah. It was a wonderful and classy evening for a wonderful and classy couple. It was great to catch up with everyone (it's been a while). We look forward to do it again in the (hopefully) not too distant future.

Apologies for the lack of updates. We've taken a bit of time to get back into our hospital living routine. Hopefully the updates will be more frequent as we get into the groove of things. For those wondering where all the football references went, like Hawthorn's season, they've been consigned to the lavatory.

Cheers,

Tim