I just want to give you a brief update of the situation and to be honest, despite all optimism, slowly I have the feeling that this is a never ending nightmare….while furniture and almost all personal belongings are waiting for us in Germany, we are still stuck in hospital in London.

Luka is constantly fighting temperatures of 40 – 40,5 degrees, the rash took over his whole body and we have to try to stabilize him for the periods between the paracetamol. It all looks like a massive coincidence, that he picked up a virus right at the time he has got his second day of chemo 2 weeks ago. He spiked a temperature 10 days ago, it came down again. Then the chemo hit, he was neutopenic (no immune system) and finally after an incubation period of about 10 days the virus hit him and here we are. Even though the doctors told us that all symptoms (rash, fevers, rigors, diarrhoea….) get worse before it gets better you will never be prepared for that scenario. The rash started off as ‚chicken pox‘ rash and now he looks like he has been falling asleep on the beach for a week….bright red, turning into purple and he is covered in one big purple spot…. Shivering with rigors we have to try to ‚cool him down‘ before we are able to relieve him with the next dose of paracetamol.

Luckily (and as you all know Luka) he is the most extrordinary ‚patient’…and he really is ‚patience‘ ! It seems that Mom is loosing her patience slowly 😉

Don’t want to complain, just want to give you an insight about what life is for us and moreover of how (especially) I feel right now. Now it’s me time ! There is for sure no return back to our ‚old‘ life. No return to Germany, no curance of Luka’s current virus symptoms, no possible miraculous curance of Luka’s overall disease will bring back our life we used to have back in Germany or at the beginning in the UK. Our life as such disappeared five years ago after Luka’s first diagnosis. Inbetween we built up a new life, a strong and lovable life, definitely more intense but different…and away from ‚home‘. Now we are about to leave for ‚home‘ and everybody is expecting us to be ‚happy’…but what shall we expect ? Yes, of course, our strong and loving family, our caring and loving friends, a nice new house….they all will be waiting for us and they will carry us further along. As they did before, during our stay in London and as the will in the future. It is just us, our small familiy of 6…we have to find a new place in our ‚old home‘ since we never ever experienced all those extreme situations before in our life back in Germany…. The last 5 years of Luka’s illness did give us such a strong basis and network here , in London and this will be very hard to leave. We learnt how to handle every single situation, no matter of how severe it was. This made us stronger, more confident and let us live again a ’normal‘ life. Now we are waiting for small gap with no fever, no sickness, no sideeffects to travel back to Germany and rush right into hospital again…..and everything will be new….

Ok, this is the time to stop now…if you close one door, a new one will be opened and I am still hoping for that ! If there is a reason behind all this, that must be the one !

Time to say THANK YOU to all of you who made our life so lovable for that last 5 years, who made us laugh and cry, who made us stronger and let us be weak…

Thank you for all letters, words, hugs, brownies, gifts, dinners, lunches, candles, houses (!), babysittings, walks, talks, rides, fexibilities, and and and…..Thanks for caring for us and being there and making us STRONG !

We won’t let you down and be strong furtheron !!! It doesn’t matter where…….