As always, I can’t believe how time is flying by, by looking back at the last couple of weeks. But if you are going forward, it is hard to see the improvement. Looking back now, we can see a slow but steady improvement !

Let’s take it backwards from today:

Tonight we have been out for a real family dinner for the first time in ages….Burger time in Hofheim ! Luka played card games with Mika, went with Mika, Franzi and a friend to get an icecream for desert (a 10 minute walk), we just came back home and right now he finishes a 3 hour Monopoly game with Karsten he started earlier today (they both kicked out Mika hours ago ;))

Yesterday he went to the zoo with Karsten and a schoolmate (unfortunately no pics !!!). First trip in 5 weeks….

The other amount of days before he was trying to cope with whatever has been thrown at him….

…and this has been a lot.

Tomorrow we will have the last day of radiotherapy. Luckily it seems that it worked from day 1 already. The first few days you could literally see how his eye was getting better. From day 3 on, he said he can open his eye without any pain. Today, you can see no difference between the 2 eyes. Even his eyesight is much better, although not back to normal.

Luka’s biggest ‚problem‘ right now is what steroids (Kortison) is doing to his body….next to the moody swings (almost like depressions) he is hungry all day and he gained 6 Kilos (12 pounds…don’t ask me about stones ;)) within one and a half weeks….his belly is immense, his face looks like the typical moon face and his temper is sometimes ‚overboard‘ 😉

Luckily we are tapering off the steroids and hope to be back in shape soon !

With his inflated belly we had a few rollercoaster rides, as we all (including the doctors) thought it might possibly be not the effect of the steroids but metastasis exploding in his abdomen. I do not want to tell you how it feels watching the doctor, measuring his intestants and whatever she could find during the ultrasound and then mentioning that we should rather have an MRI of the abdomen because there seems to be a problem…..In the end we found out that we are talking about the liver metastasis….the ones that we have seen long time ago and we knew about, but the doctor did not see all of Luka’s reports before the examination (how could she with all things that are going on with Luka….). So the liver mets have been growing, but not „too“ bad.

Anyhow, as always we manage to fall back into a ‚reset mode‘ and live our family life day by day as we are able to. Annika, Mika, Franzi and Luka are going to school, Karsten going to work with a few hospital and home office days. Luka and I try to manage radiation, transfusions, ‚playdates‘ and daily life on a day to day basis.

Looking back now, especially with looking at the pictures it seems not to be too bad….we have had ‚the hell of a lot visitors’…from London and everywhere !!!! We LOVE it !!! We have been to the hairdresser (Luka slept for hours, woke up and said: I need a haircut, now ! …and I need to get some stuff for school….for next term…) So we did….

We have been at school for a visit… (I never saw a bigger smile on his face !) and slowly we have the feeling that our Luka is back again (as soon as he has left his ‚moon face suit‘ from steroids)

And while we manage to get along with what we’ve got (left) there comes HOPE along….. We might have the chance to participate in a trial back in London….We don’t know anything for sure yet but we do know that we will travel to London within the next 2 weeks, Luka will have some screenings and if he is eligible, he will take a new ‚tablet‘ …a promising one….

We see this as an opportunity to have not only our family summer breakaway….London is always worth a trip ;))) Kids are all excited, we will be in hospital a few times (as in Frankfurt), Luka will take his pills (as in Frankfurt) and else we will enjoy our stay for as long as we have to and we will hope….hope for a good time, as good and as long as it gets !

As soon as we know more we will let you know !

For now, let me end with the best feeling ever…..a Luka laughing out loud as he used to laugh before while I bring him to bed !!!

And let me say that all of you are carrying us along the way….and you do !!!! You know what I mean…..Lasagne, flowers, cards, mails, visits, meals, TIME, coffees, words, gifts, …. you name it…..Thanks !

PPS: Won’t read through this again…please excuse typos and tiredness 😉