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So, how are we ? Today is a good day,  (a little more than 4 month after Luka passed away) I would say we are good, we are coping rather well, sometimes surprisingly well ! The kids are back to school, Karsten is back to work and I am trying to find my old ‚me‘ under all the things that have happened throughout the last years… And I realise, there is a new ‚me‘, someone who is looking forward to the future, despite the past or even because of the past!

Every day, every week, we realise how much strength Luka gave us. He made sure that we will cope and he left us such valuable wise things and memories… Looking at the pictures of Luka’s Memory card you will see a spunky little boy even though he has been severly ill at all times !!! Luka always made the best out of the situation, he never complained, always accepted the facts and lived his own and very precious life instead !

The most important fact for us is that we had the chance to give everything for him! We absolutely did EVERYTHING we possibly could do for him. Even the last days, he was not scared, he was happy to be at home and surrounded by the ones he loved. He felt the love and he made sure that we know this and that we will NEVER forget this…. one of the biggest gifts your child can give to you !

So how am I ? Today I am good but there are days, sometimes hours, sometimes moments where I am sad, desperate and heartbroken that we had to let him go.

But at the same time I am and we are strong, peaceful, hopeful and always fullfilled with everything Luka gave to us. With his behaviour, his way of dealing with the whole situation he succeeded in giving us comfort for our ongoing life.  We will always be as good as he was in lifetime !

The fact that he passed away, just stopped breathing with a smile on his face, (after all this struggle) while we all have been sitting closely next to him,  gives me the feeling that we have to let him go as peacefully as he left….

Anyhow there are hours where you just can’t believe it, days of sorrow, days of sobbing….But the phases between the good days and the bad moments are getting in a better proportion over time!

Inbetween I keep myself busy and I started working for the charity that is linked directly to Luka’s clinic and that is actually funding the doctors who took care so well of Luka and us ! I decided to use my knowledge I collected over the years -with and because of Luka- and I will stick to the ‚business‘ to make sure I can help other families in the same situation. When we came to the clinic, I always had the feeling that I can pass on my responsibility and just relax and let go for a short moment. They always made us feel like home, and they cared ….this is something I would like to secure for other families and at the same time it will always be a special connection between Luka and me.

We have donnated the money we received instead of flowers to the people who have really, physically and mentally helped us throughout our journey. We have a special and personal connection to all of them and this is why we decided to fund-raise furtheron ! For the first time we were able to see where the money actually goes and how it helps our children and us !

So if you plan a donation and you don’t have the suitable organisation to do so, we can assure you that the money at those institutions will go straight to the benefit of the children and families ! I will do this once in my blog because I know by heart how it feels ‚on the other side’…. You are more than welcome to share this link !

For Germany:

In Gedenken an Luka

For the UK:

In memory of Luka Stroh

 

For today I will say good bye and happy easter…we will now be off for a few days to Italy. Our first trip in the new family setting….Probably Rome will cheer us up a bit and we will definitely light up a candle for Luka in the Vatican ! An updated family photo will be posted 😉 !

IMG_4747IMG_4748IMG_4746IMG_4772

IMG_4770IMG_4764IMG_4771IMG_4767IMG_4766IMG_4768IMG_4765

]]> http://www.helft-luka.de/blog/?feed=rss2&p=5603 4 November 1st 2015: Moments…. http://www.helft-luka.de/blog/?p=5483 http://www.helft-luka.de/blog/?p=5483#comments Mon, 02 Nov 2015 08:58:53 +0000 http://www.helft-luka.de/blog/?p=5483 … Weiterlesen →]]> One week.... a good Nutella moment British Monopoly reunion it has been a long Monopoly night more Monopoly ! Annika's birthday... a special hug... and a special gift ! exhausted screentime ;) 2 lazy boys Full house - kids meal ! not really amused :( :( Playtime ! Best Friends Forever good times ! ;) London - Hamburg - Frankfurt connection happy times ! London is calling ! relaxed ... YummY MOVIETIME cozy time BOYS my favourite ! last Monday....

Looking back at the last 4 weeks, we have been lucky spending some good moments with Luka. It seems he concentrated and saved all his remaining power for a few occasions. We have not been able to go away for Majorca, Hamburg or London but as the weather has been really nice here it almost made it up for Majorca. With regard to Hamburg and London…..Hamburg and London „reasons“ came to visit us here in Hofheim 😉

Luka was able to spend some quality time with Alex, Marcel and Tim, his best buddies from school in London, as well as some friends from his school here in Hofheim. The visitor gaps have been filled with family and siblings, so there was plenty to do. Hospital visits and palliative care team completed our time schedule.

Comparing the pictures we realise that the illness is progressing very fast. The painful time  between the good moments is getting longer and even more painful. The pain is literally crawling allover his body now and he suffers from losses of functions. 2 weeks ago he couldn’t move his left arm anymore which fortunately could be reversed (by most likely steroids). Then his lip and chin was getting numb…..on his scalp you can see the tumors growing outside. I don’t want to imagine what is going on inside.

The good moments are getting less and less but since last night (I have the feeling) we are approaching a new dimension as Luka could not walk anymore. Even if this might just be a temporary side effect for now, it only prolongs the inevitable…

For the first time in my life I am truly hoping for the inevitable to happen, for Luka’s sake !!!

I held off the blog for a day because I wanted to think about what I wrote, especially my last sentence. Unfortunately it all got worse yesterday and last night. Luka can’t move his legs anymore, he can’t go to the toilet anymore and more on he can’t move his left arm…

This is so unbelievable and I do just hope for some mercy… NOW !!!

]]> http://www.helft-luka.de/blog/?feed=rss2&p=5483 39 Friday, October 2nd 2015: good days and bad days…. http://www.helft-luka.de/blog/?p=5452 http://www.helft-luka.de/blog/?p=5452#comments Fri, 02 Oct 2015 17:39:21 +0000 http://www.helft-luka.de/blog/?p=5452 … Weiterlesen →]]> Reading through my last note makes me wonder where time goes….and even though our whole life is about time right now…

Thinking back of the day when we spoke to the kids about the stage of Luka’s illness seems to be like yesterday. At that time we thought we might not even have four more weeks together. Now it is already four weeks later and if I flip through the pics I just pray and hope for more weeks….

We had some really poor days (and currently have…) with lots of pain from the spine (has been cyberknifed), pain from the ‚exploding‘ liver metastasis (has been ‚radiotherapied‘), followed by 2 really great weeks with a trip to Munich and Oberammergau, where Luka visited our ‚healer‘ again. At least we managed to get him back some quality of life with the treatment ! Since 10 days, the disease seems to progress again and Luka is having severe pain inbetween, first in his hip (which is under control right now) then it went fluently over in pain in his back and shoulder. This time more difficult to get under control. Most likely the pain comes from the lungs, where some ‚lesions‘ are putting pressure to the pleura. We had to increase the dose of Morphin patches, Morphin nose spray, Methadon and other painkillers…. As soon as the pain is under control, Luka is up and  gone (even on the trampoline !). But when the higher dose kicks in he is sleepy, sleeping and just not himself. We are doing everything possible to make it as comfortable as possible for him. So we don’t worry about MRI’s, CT’s or any other scans anymore, we just try to make sure that he is not into to much pain, or rather painfree.

Our mood is strictly attached to Luka’s pain level but as you can imagine, Luka is trying to make it easy for us ! Next to my job as nurse that keeps me busy 24/7 we are having a quite ’normal‘ life, except for the fact that we do not go out very often. Luka is sleeping into the day, then waiting for his siblings to return from school and afternoon and evening is filled with family and friends, TV, games (Karsten and Luka are playing Monopoly for ages…and I mean AGES !), dice games, Donald Duck books, napping)…to be honest, this could go on forever for me ! But I realise slowly that Luka is getting less and less. It seems that the disease is coming in exacerbation (Schueben) day by day and the side effects of the morphines are taking its toll….

I am so proud of the children as they are strong, caring, thoughtful but yet so natural and normal with Luka so we sometimes do forget about the situation we are in. Then we sit together and they are all talking, laughing, being silly and discussing plans for christmas, birthday parties and whatever comes up. Luka in the middle of everything with his own plans….

As Luka always takes his own way we just hope that we are able to accompany him wherever he goes… As his next plan is Majorca and Hamburg we will definitely do 🙂    !!!!!

All your mails, calls, texts, cards and thoughts are with us ….. THANKS 😉

Raclette evening 2.of September radiotherapy of liver mets a star ! Monopoly Millionaire again big hospital smile - radiotherapy works obviously ! Touch screen Mc Donalds at Frankfurt airport.... who cares about the food if you have screens ? a scooter ride to Oma and Opa for BBQ... and mum is sooo silly...embarassing ! this is called cat-nap ! Love it ! 11.09.2015 Don't tell ... ...the docs ! Mr. Sporty Travelling... ...to... ...Munich: ;) new medicine approach busy working back home (21.09.) checking out our new stairs... Guess what ? ;) cat-nap-alarm ! a closer look :( last Sunday... Yesterdays cat- ]]> http://www.helft-luka.de/blog/?feed=rss2&p=5452 16 Wednesday, September 2nd 2015: …quiet period… http://www.helft-luka.de/blog/?p=5443 http://www.helft-luka.de/blog/?p=5443#comments Wed, 02 Sep 2015 17:08:35 +0000 http://www.helft-luka.de/blog/?p=5443 … Weiterlesen →]]> Dear all,

sorry for being so quiet for so long  but unfortunately we have to get prepared for the worst…I will provide you with more information asap but tonight we have to have another Raclette evening and I am in charge 🙂

We had a long conversation last Sunday with all the kids…in different formations though. They all know now what will happen to Luka sooner or later…. I needed some time to get ‚prepared‘ …I still do and most likely will always but I will definitely give you an update soon about the why’s, when’s, if’s and so on….

Inbetween you can be sure that we will always take the best path we can find and make the most out of it !!! Sorry if I don’t reply to any phone calls, texts, mails or whatsoever…I need to collect all the power I can possibly imagine right now…..

Lots of love….. Steffie

a good moment...

a good moment...

...followed by bad moments...

...followed by bad moments..

a good moment... ...followed by bad moments... like most of the time (with Lucy :) :) ]]> http://www.helft-luka.de/blog/?feed=rss2&p=5443 25 Saturday 8th of August 2015: first impressions… http://www.helft-luka.de/blog/?p=5429 http://www.helft-luka.de/blog/?p=5429#comments Sat, 08 Aug 2015 22:34:30 +0000 http://www.helft-luka.de/blog/?p=5429 … Weiterlesen →]]> Majorca! So familiar, so loved, so hot this year !!! We are having a good time but a bumpy time…First two days have been great but then Luka came down with terrible tummy aches. Possibly a tummy bug…possibly not…. Don’t even try to imagine myself getting around those thoughts….

Tummy ache is gone now, eating still a problem but fortunately he started swimming again tonight!!!! My thoughts are still there !!! Anyhow, let’s enoy and go forward.

Pics are from the first day!!! What a difference a day makes…. tbc…

Kilroy is watching you ;) on the boat... Beach boy ;) YUMMY !!!! MY BOYS !!! MY FAVOURITE !!! Yahtzee time !!! ]]> http://www.helft-luka.de/blog/?feed=rss2&p=5429 7 Wednesday, 5th of August 2015: Breakaway http://www.helft-luka.de/blog/?p=5418 http://www.helft-luka.de/blog/?p=5418#comments Wed, 05 Aug 2015 12:14:37 +0000 http://www.helft-luka.de/blog/?p=5418 … Weiterlesen →]]> After a few long and draining weeks with all kind of problems and bad news we decided to give us all a break. Luka’s blood counts are unfortunately not good/high  enough to participate in the London trial. All kind of chemo and medicatios we would need to give in order to suppress the aggressive progression of the disease, is likely to affect  the bloodcounts in a negative way. If we don’t give the medications, we can hope for a recovery of the bloodcounts in the near future in order to get into the trial…but at the same time the disease is likely to spread at a speed we don’t even want to think about. So we decided to go for a trip to Majorca ;)…today !

Palma has a very good clinic and we haven’t seen it yet…so this is a good reason to go for it!

Hopefully the distraction, the sun and the Spanish chilly 35 degrees (as opposed to the 40 degrees in Germany!!!!) will do the trick and push Luka’s counts high and even higher!

It is quite an adventure as we are traveling with loads of medications but the best medicine will be a ‚holiday feeling‘ that hopefully gives us a bit more of our ‚cheeky monkey‘ back. Currently the ‚old‘ Luka  is still hiding somewhere….only once in a while his  ’spunkyness‘ is showing.

So let’s hope for the best and let’s hope that once we are back we will be able to go straight to London where all beds are waiting for us !!!

Meanwhile our house swap friends are enjoying our house  in Germany 😉 we want more of those pics !!!! und noch ein CT.... art work in hospital finished !

]]> http://www.helft-luka.de/blog/?feed=rss2&p=5418 2 Sunday, 19th of July 2015: Hope…!?!? http://www.helft-luka.de/blog/?p=5386 http://www.helft-luka.de/blog/?p=5386#comments Sun, 19 Jul 2015 21:09:46 +0000 http://www.helft-luka.de/blog/?p=5386 … Weiterlesen →]]> 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 😉

First radiotherapy SCARY.... Firstday at radiaion, watching the screen (look at him !!!) 4th day of radiation (friday) 5th day after radiation...eye better but steroids kicking in. at the hairdresser an hour at school...I love it ! London visitors... ;) what steroids can do to you... ;) his new labeled shirt...at radiation me, heading out at 38 C for platelets for Luka... Linus from Munich/London ...big love !!! Visitor from Osnabrueck/London ;))) the biggest smile ! Monopoly winner of the day !!! Burger time in Hofheim ]]> http://www.helft-luka.de/blog/?feed=rss2&p=5386 6 Friday, 3rd of July 2015: fallen down again… http://www.helft-luka.de/blog/?p=5360 http://www.helft-luka.de/blog/?p=5360#comments Fri, 03 Jul 2015 21:51:54 +0000 http://www.helft-luka.de/blog/?p=5360 … Weiterlesen →]]> 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 !

Monday, 22nd of June: my cheeky money ! eye still open...24th of June chocolate fondue with Maria ;) Friday, 26th of June: 'lunch' out Pancakes with Maria ;) preparing chocolate fondue ...what steroids can do... family chocolate fondue ... YUMMY !!! Serious gaming ! Serious swimming ! ;) Again, another mask... ;( On the trampoline...upside... ...down ;) (today) ]]> http://www.helft-luka.de/blog/?feed=rss2&p=5360 6 Monday, 22nd of June 2015: some good moments… http://www.helft-luka.de/blog/?p=5341 http://www.helft-luka.de/blog/?p=5341#comments Mon, 22 Jun 2015 21:15:02 +0000 http://www.helft-luka.de/blog/?p=5341 … Weiterlesen →]]> Friday evening...Linus was waiting for Luka ! Saturday morning...what an xbox and a brother can do ! Today: Filling up energy for his siblings ! the first smile ! full concentration... (at least Luka...) Tonight !!!

We actually managed to come home last friday evening…it was a rather bumpy road as Luka was scared that the pain, the headaches from the bleeding might reoccur…It took us and the doctor a while to convince him that we have good enough medicine to avoid this happening.

Thankfully the palliative team came straight away and we were able to settle him friday night. Saturday morning at 10a.m. Luka ’sneaked‘ out of his bedroom (I pretended to be asleep) and made his way down into the living room where his siblings were watching TV. He had a bowl of cereal and started to play x box with Mika…..after a full week of not talking, eating, just sleeping and dosing this was quite a recovery. Anyhow in the afternoon he ‚collapsed‘ again….low energy 😉

Sunday was worse again and we had the palliative team at our side to try to handle his pain…the right combination of steroids (Kortison, which reduces the swelling of the brain and therefore headaches and nausea) and morphine needed to be found to keep Luka happy. He had some short, good moments inbetween.

Today, when he realised that his siblings are at school, he just turned around on the sofa and did not want to do anything. After a platelet transfusion in hospital, we returned home at the same time Franzi and Mika came home….Sudden recovery !!! Even though he needed an extra dose of Morphine later the afternoon, in the evening he was almost back to normal ! With regard to what he has been through…incredible ! He still needs plenty of time to recover and hopefully all nerves (especially those ones for the vision) will recover. Luka looks a bit ‚demolished‘ as his left eye lid is hanging down 😉 … but who cares !!!!

For the first time in the last 10 days he played the ipad again !!! I never though I could be that happy for any of my children having ’screentime“ !!!

The steps are still small and the photos just tell you a tiny part of the story….but the most important part of the story….the IMPROVEMENT !!!

Tomorrow we will enter in our 7th year of cancer….let’s not talk about it,  let’s just go for it !!

]]> http://www.helft-luka.de/blog/?feed=rss2&p=5341 9 Monday, June 1st, 2015: Pain relief….in some way http://www.helft-luka.de/blog/?p=5269 http://www.helft-luka.de/blog/?p=5269#comments Mon, 01 Jun 2015 21:09:34 +0000 http://www.helft-luka.de/blog/?p=5269 … Weiterlesen →]]> 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 !!!!!

Oberammergau

Oberammergau

DUBAI

DUBAI

Burj al Arab

Burj al Arab

pretty in orange !

pretty in orange !

..a full moon night in the desert...

..a full moon night in the desert...

Nite, nite !

Nite, nite !

The morning after...

The morning after...

a morning with camel Uschi ;)

a morning with camel Uschi 😉

a morning with camel Uschi 😉
cause I'm happy....

cause I'm happy....

Atlantis-Hotel

Atlantis-Hotel

r e s p e c t !!!!

r e s p e c t !!!!

and finally l o v e !

and finally l o v e !

;)

😉

Bye-bye Dubai :(

Bye-bye Dubai 🙁

First Communion Luka

First Communion Luka

f a m i l y !

f a m i l y !

all those gifts !!!!

all those gifts !!!!

and more...

and more...

Think he likes gifts more...

Think he likes gifts more...

...than church ;)

...than church 😉

After all...a fantastic day !

After all...a fantastic day !

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