Friday, 3rd of July 2015: fallen down again…
When we came home 2 weeks ago we thought we just have to get Luka back into shape and give him some time to recover. The first week he started slowly but steady and by the end of the week we went out for the first time, had lunch outside, went to see friends in the evening….all seemed to stabilize a bit. Over the weekend Luka started to complain about pain in his left eye. The hanging eye lid was still referred to as a side effect of the bleeding. But by Sunday I realised that it got so much worse and for the first time I had the feeling that there is something wrong with it. Not only with the eye but with Luka being again so withdrawn, sleepy and with a lack of motivation again. On Monday we went for a blood check to hospital and I asked for an opinion about his eye. 20 minutes later we found ourselves in the MRI, 2 hours later we found ourselves confronted with the bitter truth:
Within the 2 weeks since the last MRI and without any kind of chemo or ‚mice medicine‘ a new tumor developed right above Luka’s left eye. Size of his eyeball. It basically exploded…
This time we are trying hard to get back on our feet as Luka seems to fade away sometimes. He is just not himself and we do not know exactly the reason why. Is it still a recovery modus after the brain haemorrhage ? Possible. Is it the effect of the new brain metastasis ? Possible. Is it an effect of the high dosed steroids that he needs to prevent a brain swelling ? Possible. Is it the other metastasis in his body growing, exploding ??? Unfortunately possible….
We chose to stick to our plan, as always ! Step by step. We will start a radiotherapy, this time no cyberknife. Luka will be treated in 10 consecutive, very short sessions where the 3 (2 old and one new tumor) in his brain will be irradiated (bestrahlt). Additionally the whole brain will be irradiated with a lower dose….some kind of preventive radiation. All in all it will just be to minimize the effects of the tumors and slow it’s growth down and have at the same time as less side effects of the treatment and as much quality time out of hospital as possible.
When Luka has a good day, this seems to be the perfect plan, I am full of hope and we are all falling back into our family ‚routine’…. chocolate fondue, a new pool in the garden (if we can’t go to the pool it has to come to us !), friends playing the Wii with Luka…
On rather bad days, when Luka is grumpy, feeling low, sleepy and withdrawn, when I am desperately trying to find my little boy behind the fassade, my cheeky monkey, my Luka as he used to be, I am wondering what he thinks, what he feels…… does he know more than I do ? My hope and strenght just fades away and I feel as grumpy and as low as he does….
As you might be able to read between the lines…today is not one of the best days 😉
Luka is realising that his body changed quite dramatically with the steroids and this happened within a week. The current ‚heat wave‘ is not really supporting the overall feeling…so let’s see what another chocolate fondue can do 😉
We just hope that the radiation (starting next Tuesday) will bring a good result for Luka !
We will keep you updated !
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- Monday, 22nd of June: my cheeky money !
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- eye still open…24th of June
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- chocolate fondue with Maria 😉
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- Friday, 26th of June: ‚lunch‘ out
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- Pancakes with Maria 😉
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- preparing chocolate fondue …what steroids can do…
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- family chocolate fondue
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- …
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- YUMMY !!!!
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- Serious gaming !
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- Serious swimming !
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- 😉
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- Again, another mask… ;(
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- On the trampoline…upside…
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- …down 😉 (today)
Bei uns war es heute so heiß, da wäre das kein Problem mit dem Schoko-Fondue.
Einfach die Schoki kurz rausstellen und los geht’s. Man hält es echt nur im Pool liegend aus. Es geht definitiv alles nur Schritt für Schritt ….
Wir denken an Euch. Luka hat ja schon so viel erlebt und mitgemacht, er schafft das irgendwie. Mit Eurer Hilfe und Kraft.
Wir wünschen Euch eine ‚bessere‘ kommende Woche.
Fühlt Euch gedrückt.
Ihr Lieben,
wir sind in Gedanken bei Euch und wünschen Euch noch mehr Schoko- Fondue, Wii- und Pool- Momente .
die Familie Schmöckel
Liebe Strohs,
wir haben euch sehr vermisst beim diesjährigen Sommerfest an der DSL! Bei herrlichem Wetter war diesmal sehr viel los. Ich denke oft zurück an die intensive Phase zur gleichen Zeit im letzten Jahr und habe eben beim Aufräumen das Abschiedsvideo gefunden, das die 2b für Luka gemacht hat, weil er am letzten Tag nicht da war. Schön, dass es immer wieder glückliche Familienmomente bei Euch gibt. You’ve got the power to make a difference to Luka! Wir wünschen Euch, dass diese Momente andauern und ihr weiterhin die Kraft habt zusammen zu stehen und Lukas Leiden zu mildern.
Auch für uns heißt es Abschied nehmen in diesem Sommer – ein Kommen und Gehen hier, mit all den wunderschönen und traurigen Seiten.
Wir umarmen Euch sehr, sehr herzlich!
Alles Liebe Antje, Rolf, Julius und Alma
Liebe Steffie, das sind ja wahnsinnige „Ups and Downs“. Ich denke viel an Euch und wünsche Dir und Deinen Lieben viel Kraft und Freude für/ an alles/ allem was ihr erlebt!!! Liebe Grüße Britta
Back into the roller coaster… Wir sind alle so traurig, dass Luka und ihr mit immer mehr Rückschlägen zu kämpfen habt. Wir wünschen Euch allen, dass Eure Kraft und Zuversicht nie ausgeht!
Hier ist Count Down bis zu den Sommerferien am Freitag: Abschieds-Picknicke, Abschieds-Parties, Abschieds-Coffeemornings… Same procedure as every year!
We miss you…
Big hug
My dearest Steffie, Karsten and Stroh family,
I read your latest blog post with tears in my eyes (but not without hope!) and was going to send this message privately……(I usually feel constrained by posting! Silly, I know….) Please do not take our non-response to your posts as us not thinking or caring! You are never forgotten, always in our thoughts and prayers. As always, we are full of admiration for the way you all cope with whatever is thrown at you!! You are truly an inspiration!
The York Avenue ladies are visiting Carrie tonight in her new home in Pimlico and will all wear our bracelets and be thinking of you and drinking a toast to you all.
We send you lots of love, hugs, prayers, blessings, positive thoughts and everything else inbetween,
Liz xxxx (and Andrew, Josh, and all your friends from York Avenue of course)