King of the Cubby House (Day +349)

Hello everybody,

Welcome to the better-late-than-never February edition of the Max Der Starke blog. You will be glad to hear that despite a couple of small setbacks, Max continues to impress us with both his physical rehabilitation and his mental advancements. 

Max wrote this all on his own!

Medically speaking, there have been a couple of developments. Max had his appointment with the Immunologist to explore the possibility that he had developed an allergy. If you remember from the last blog, Max has recently experienced on a few occasions after eating, a spontaneous swelling of his lips. Despite much amateur detective work, we had been unable to narrow down the cause to any particular type of food or additive. Well, according to the immunologist, the most likely cause of Max’s reaction is idiopathic angioedema, which for those unversed in latin or medical terminology translates as ‘the cause of the swelling is unknown’. Given all that he has gone through, the immunologist said that it would be difficult to try and pin the root cause down to any one thing and as no other more serious effects were experienced, we were told just to continue to keep an eye on it, and if he has the reaction again, apply ice and/or administer anti-histamines - and avoid that food.
  

As for Max’s skin, this continues to be a concern. The bout of hot weather experienced in Melbourne a couple of weeks ago seemed to knock him around a bit and his skin flared up worse that it had been for a while. Whether it was a good thing or not, it was probably at it’s most fiery on the day of Max’s appointment with Doctor KT. It had been hoped that over time Max's skin would settle down all on it's own, but according to the Doctor, it might be time to try a new course of action. In the past, they have investigated Photopheresis as a treatment option but this has pretty much been ruled out due to Max’s size (or lack thereof). We are expecting that Max will soon be prescribed a medication traditionally used in the treatment of cancer but that has recently been used with some success in treating GVHD. We'll let you know more after his next visit to Doctor KT.

Feet looking pretty red and flakey.

In the past year, due to the steroids Max has been on, he has not grown in height and, as mentioned in previous posts, has dropped a couple of kilos in weight. Hopefully in the long term he will catch up some of this lost time in his physical development. The more immediate concern is his weight which continues to hover around the 13.5 - 14 kilogram mark. He has gone a little backwards in his enthusiasm for food. An unfortunate side effect of him becoming more expressive is that he is quite brilliant in articulating long winded excuses as to why he is not quite ready to eat. This can be simultaneously hilarious and exasperating. As was the case in hospital, his tastes continue to change on a frequent basis; yesterday's favourite (eg pork dumplings) can easily become today's "I don't like it any more / I am off them" meal. The current favourite is Spaghetti Bolognaise, but we'll see how long that lasts.

On a more positive note, with each day, Max becomes more physically active and capable. It looks like all of Bianca and the physio's hard work is starting to pay off. On top of the physiotherapy session Max has on each regular trip to the hospital (once every two weeks), the hospital have arranged for Max to have, for six weeks, a weekly at home physiotherapy session, which needless to say he enjoys immensely. With the improvement in the weather of late, Max has been able to spend a lot more more time out in the backyard, running around, kicking the soccer ball and playing in his cubby. The other weekend, while Bianca and I were cleaning out the garage, we took our eyes off Max for just a couple of minutes. Before we knew it, Max was demanding that we should come out from the garage to the backyard where we were shocked to see that he was standing on the landing of his cubby house. The amazing thing being that he had climbed up the steps of the cubby house all on his own.

Amazingly, yesterday it was a year to the day from when Max had his Hickman line put in. With the next month marking the one-year anniversary of his transplant look out for a special edition anniversary update.


Cheers,


Tim