Quick update:
the bleeding came from one metastasis that has been cyber knifed in January. We can not definitely tell why it started to bleed; because of the cyber knife or because of uncontrolled growth? we just leave this unanswered for now… Fact is that Luka’s sight is affected but has been improving quite a bit up to now which is a very good sign for overall improvements. Anyhow, we will have no surgery as the risk of the surgery is by far higher than the risk of letting it heal on its own. For every ‚trauma‘ patient you would say, time will heal it. This is exactly our problem. TIME. We should just give Luka some time to recover. But patience is not one of our favorites at the moment.
Luka is sleeping most of the day and night – very strange and unusual for us. Luckily he is pain free but he always has his eyes closed. Sometimes he sits up and wants a toilet, a drink or something to eat. These moments are very rare and eating is not working at all. Either his taste has changed due to the morphine or it is due to the damage of the nerves in the brain. we don’t know yet. But he also has his very own spirit coming through by asking funny (and quite sharp) questions all of the sudden… Luka: Mom, why are Franzi and Mika visiting me ? Me: Because they are missing you and would like to see you ! Luka: But they are not allowed in here because they are still not 14 !!! How did they get into hospital??? Me: ….we smuggled them in ) So it seems that his brain is not affected too much because he is calculating ; eyes closed; that Mika can come in in 4 weeks …after his 14th birthday
We are trying to keep calm and carry on but to be honest it is getting quite tight right now …and we know it. Looking at the CT’s MRI’s and at all the reports, we have been knowing it for a long time. Looking at Luka, we always thought different. At this moment the CT’s And MRI’s are coming pretty close to how Luka looks like when he lies there, eyes closed….and only time can help us to get those pictures apart again, at least for some more time!
So we will work on it, on our patience , Luka’s recovery of the bleeding and in some more good time!

Personally I had a really bad day today and not many things to laugh about. But I received one mail which put the biggest smile on my face, which turned my day and got me back into Luka’s and my strength. If you ever want to know how Lika really is…this is him!!!
It is written from one of the mothers in Luka’s class, (in German and I won’t translate it tonight…I am exhausted you will have to google translate it) and you will have to disregard all my typos !!!!
xx Steffie

„…habe gerade einmal mehr die Einträge auf Lukas Blog gelesen. So schwer die Informationen an sich sind, so erfrischend und lebensfroh sind dagegen die Bilder.

Ende Mai bin ich mit der Klasse zum Sportpark Heide gelaufen – Luka mittendrin, munter und vergnügt. Zu Anfang fiel er (zusammen mit einem der Mädchen) etwas hinter der Klasse zurück. Ich hatte mir Frau Bok vereinbart, das Schlusslicht zu machen, also versuchte ich, die beiden zu motivieren, zu der Klasse aufzuschliessen. Nicht wissend, ob ein höheres Tempo für Luka evtl. zu anstrengend wäre, habe ich den beiden Kindern angeboten ihre Taschen zu tragen, um das Laufen leichter zu machen. Nun, das Mädchen drücke mir sofort die Tasche in die Hand – Luka sagte, dies wäre nicht nötig, aber ich könne sein Schulbrot tragen, er hätte derzeit keinen Hunger darauf.

Prima, nun hatte ich in der einen Hand die Tasche des Mädchens und in der anderen Lukas angebissenes Brot…. (was ich ihm dann später auf dem Sportplatz zurückgegeben habe, wo er es auch gegessen hat.)

Luka hat dann einen Sprint eingelegt und zu der Klasse aufgeschlossen, dass Mädchen blieb weiterhin hinter allen zurück und beschwerte sich über den langen, harten Weg. Warum wir denn keinen Bus nähmen…. :-).

Auf dem Sportplatz habe ich dann (ohne hier von sporttechnischem Wert zu sein…) mit den Kindern Weitwurf geübt. Luka immer mittendrin, fröhlich und mit viel Energie!!! Es war toll, ihn so zu sehen – es passt genau zu den Urlaubsbildern!

Mögen diese Bilder bleiben!! Wir wünschen alles, alles Gute und vor allem die notwendige Kraft und Energie. Und wenn wir dazu irgendetwas beitragen können, sehr gerne !!“

DANKE, das habt Ihr gerade !!!

open eyes and a slight smile...