"it's for my graft versus toast" (Day +153)

Max, Bee and I are very much enjoying being back at home. Over the past three weeks, Max has settled quite comfortably back into suburban living. As he is not particularly mobile and is unable to walk without assistance he is spending most of his time confined to the couch. Not that there has been any argument from him as it gives him ample opportunity to indulge in his passion for watching Top Gear. It has also given Bee the chance to make space for all the goodies Max accumulated in hospital and to give the house a big spring clean. I took the past week off work to spend some time hanging out on the couch with Max (which I excel at) and helping Bee with the tidying up (not so much).

When we last spoke, Max was battling a suspected infection in his knee joint. Fortunately the prescribed antibiotics turned things around very quickly and within a few days Max was able to put weight on his right leg again. This was a massive relief as if left untreated we were informed that the long term prognosis for his leg could be particularly nasty. His blood counts over the past couple of weeks have been cause for some slight concern. His platelet count, which had got as high as 137 (normal range for a healthy person: 150 - 450), was last Monday tracked at 52. We were told that the count may have been compromised as the nurse had found clots in the line when taking the sample. On Friday, the platelet count was up to 66, which represented an increase and yet it is still a long way off his high. His neutraphil counts have also dropped to now just 0.4 so the doctor decided to put Max on a course of GCSF, requiring daily injections via an insuflon catheter, to boost the production of his white blood cells.  His Haemoglobin count is on the rise and was last recorded at 90 (normal range for a healthy child: 111 - 160). What does this all mean? The doctors don't seem to be too concerned by the fluctuating counts. We keep getting told that this is normal post transplant and that the important thing to focus on is that the new marrow is working, it will just take time for it to get used to living in a new body.

Max still complains of a sore back and we think that this is most likely the cause of him being extremely hesitant when exerting himself physically, whether it be walking, crawling or moving from one position on the couch to another. His back was X rayed a couple of weeks ago and it showed that there were signs of crushed vertebrae, most likely the result of a deterioration in his bones due to the medication he is on. One of the side effects of being on such a high sustained dose of steroids is that it can weaken the bones. Again the doctors do not seem to be too concerned by his back. His dose of steroids is gradually being decreased and he his now taking calcium tablets daily so our hope is that his back will eventually sort itself out. The doctor is still happy for him to have physio and has encouraged us that given the position of the damaged verterbrae that exercise should actually improve his condition.

Max is still on a veritable smorgasbord of medications and will be for some time to come. Each day at  8 am he has 14 different medications, at 2 pm its 4 and at 8 pm he has 13, all by mouth. By now, he's familiar with most of the names of the medications and we often like to play a game during medicine time of asking him what each medication is and what it is supposed to treat. It is very funny to hear him repeat the names of the medications back to us. Our favourite response is when we ask him what Cyclosporin is for, he gleefully replies "it's for my graft versus toast!". Hilarious! He is also required to have a daily dose of two different antibiotics which need to be administered intravenously via his Hickman line. Fortunately, we don't have to go into hospital for this as the nurse comes to us, thanks to the nursing at home service provided by the hospital.  We are still making the trek back to the Hospital two times a week for appointments with the doctor, tests and physio sessions, but we are hoping that this will soon be reduced to a weekly event.

In other news, a few weeks back when we were still in hospital, Bee entered Max into a competition to win one of ten Wiggles Video Game packages, including a Wiggles Singstar Game, a Playstation 2 and two microphones. For those who haven't touched a video game console since the Atari, a Singstar game allows you to turn your Playstation video game console into a karaoke machine. To enter the competition, we had to film Max singing a Wiggles song and submit the entry via Youtube (you can see the entry below).



Two weeks ago Bee got an email telling us that Max had won one of the ten prize packs! A couple of days later we received the prize in the mail and I couldn't hook it up fast enough. We have enjoyed many a wiggles karaoke session since. Max's favourite song would either be 'Shimmie Shimmie' or 'Lights Camera Action Wiggles' while Bee has proved herself to be a demon at 'Dorothy the Dinosaur'. I'm more of a traditionalist and favour 'Toot toot chugga chugga' or 'Fruit Salad'.

Again, thanks to all for the well wishes, cards and messages of support. We'll be back with another update in a couple of weeks.

Cheers,

Timmo