I can’t believe how time is flying by. Sorry to keep you all waiting for such a long time but to be honest, we needed to ‚consolidate‘ and we still don’t know exactly what our path will be by now. First of all we should mention the most important thing above all others, Luka’s pain is under control with all kind of pain patches, morphin and so on. Even better, we were able to taper off the pain killers and he is back on the trampoline like a phoenix…with no pain and two collapsed vertebras. (I need some pain relief when I see him jumping !!!)
We had another MRI of chest and abdomen done, which unfortunately showed a new soft tissue tumor around the two vertebra that collapsed. As well there is another lesion in his liver (which had been detected a longer time ago) but now it is growing in size. Without ‚knowing‘ what exactly it is from the pictures, most likely it will be cancer as well….but as it does not make any difference for the treatment now, we decided not to bother Luka with a biopsy.
We are now dealing with metastasis in his brain, lungs, liver and his back….all in a ‚quite stable state‘ at the moment, giving him no pain or discomfort. Anyhow options are getting less and less by now.
Given the extremely good condition that Luka is in right now, we tend to fight with everything we might be able to do…but we have to think about side effects and the time Luka would have to spent in hospital with any kind of treatment. So we can find arguments for more radiation (to get rid of the lung and the back metastasis) but as well to just let him live without any hospital stays for as long as it lasts. Some docs do not want to treat him anymore for ‚cosmetic surgeries‘ (as a cure is not possible anymore at this stage. Surely they would treat if he is in pain !), others think about more treatment as he is still in such a good shape. We are still waiting for those results…
If you see Luka and how he is living and enjoying his life, there is no doubt that you would try to do anything to give him more of that quality time !
In the end we decided to stick to what we have been doing all the time before: we will gather all information, will do a new set of scans in the near future, to see which way the development of the disease is going and then we decide if there will be any more ‚reasonable therapies‘ such as radiation, surgery, whatsoever. Inbetween Luka is having his regular chemo and his ‚mice medicine‘ (which slowly starts to affect the colour of his hair…he is getting grey…like father like son ;)) and above all this he is having a good time !
In the end Karsten and I will have to live the rest of our life with the decisions taken….not the doctors ! Up to now, there is not a single decision we wouldn’t take the same way again….let’s stick to that !
Sorry, it is all a bit confusing…gues why it took me so long to write 😉 ?
Let me spoil you for now with a summary of pics from the last weeks….Dubai, first communion and with JUST LUKA !
THANKS for your patience and all your support !!!!!