Friday, 18th of November 2016: Ein Jahr, eine Ewigkeit oder war es erst gestern? A year, ages or was it just yesterday?

Wir sind heute sprachlos, es tut so weh…

Und dennoch werden wir getragen, getragen durch Liebe und Zuspruch…. Besser kann ich meine Gefühle nicht ausdrücken als diese Worte die uns heute erreichten:

„….sicher werdet auch ihr von Erinnerungen und Bildern überschwemmt.

Ein Jahr, eine Ewigkeit oder war es erst gestern?

Luka ist sicher jeden Tag und jede Minute in eurem Haus präsent und seine und eure Liebe wird euch sicher durch die dunkle Jahreszeit tragen.“

(Danke, Dorothea!)

Today we find no words, it hurts so much…

However we are surrounded by love and encouragement. I can not express our feelings any better than the words that reached us today:

„…we are sure that you will also be overwhelmed by memories and pictures.

A year, ages or was it just yesterday?

Luka will surely be present in your house any day and any minute and his and your  love will carry you safely through this dark time of the year.“

(Thank you, Dorothea!)

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Thursday, 24th of March, 2016: Happy easter, Frohe Ostern !

So many people are asking us: ‚How are you ?‘

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 😉 !

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Saturday, 30th of January, 2016: …birthday boy…

Luka, 

…no words can describe how much we miss you…

… and no words are needed to express how much we love you !
  
    
    
    
    
 

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24th of December 2015: For Christmas…

For Christmas and the new year… 

…we wish you the same unlimited love, unconditional trust and enormous strength Luka left to our family. We will carry his gift in our heart ❤️…forever!

   
    
 

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Wednesday, 18th of November 2015: LUKA

Sadly Luka had to leave us today. At 9:35 he stopped breathing after struggling for such a long time. We feel blessed that he was able to leave quietly and in peace after all….a typical Luka! 

Give us some time and we will get back to you!   

  

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Sunday 15th of November 2015: sleepless nights

After two sleepless nights with severe fits and seizures we had to sedate Luka -slightly- hopefully he is a bit more stable tonight. 

anyhow we all do not want to be alone tonight……

   

  

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Friday, 13th of November 2015: Heartbreaker…

It is heartbreaking to watch Luka literally disappearing. Day by day he is loosing more and more control over his body and I have the feeling I am loosing my mind more and more. At least we still have the pain under control.  But now he is starting to get fits and seizures due to the invasion of the metastasis throughout the brain. So we have to give him analgesia and anxiolytics so he doesn’t witness loss of all his functions.  I don’t want to tell you about all the nasty side effects of the medications, the cancer, of whatsoever….he stopped eating 2 weeks ago….

Annika, Mika and Franzi are as close to Luka as they could possibly be. They are helping to empty vomit bowls, change nappies, change beds in the middle of the night, run up and down the house to help to comfort Luka as much as he needs. This is the only thing they can do for him right now and the best they can do for him! Despite of the unbearable situation we are in momentarily, I could’t be any prouder of my children!

Today we had to give him the first day dose of analgesia to suppress the fits. So Luka did just sleep, didn’t open his eyes and had problems to articulate himself. Any questions we asked him throughout the day he answered (if at all) by nodding or shaking his head. Anyhow, as always we had family and friends coming around to visit and to just be with us. When his little grand cousin Hanna left, she came to Luka and whispered a tiny good night towards him. Luka opened his eyes, waved at her and said loudly Good night….   he loves to have us around him and follows the voices and noises closely….the little heartbreaker….

Again, the biggest thank you to the palliative care team….what would life be without them….and after some sleepless nights it is sometimes time to get spoiled with some ice cream 😉

   
    
    
    
    
   

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10th of November 2015: Pain control….

…mission fulfilled! After some sleepless nights we had to take the decision to -lets put it this way- ‚almost sedate‘ Luka in order to get the pain under control. Finally last night we had almost 12 hours of sleep…. we, that means Luka and me…then we got up and while I stayed awake Luka slept throughout the whole day. This is basically the trade off….sleeping versus pain.  Anyhow, he wanted us to be around him while he was sleeping. So while I had some lessons on how to use the pump, the port and stuff like this,  the kids had a few games…..

My moment of the day:

Luka didn’t talk the whole day, most likely due to the high dose of all the medications. If so, he was communicating by nodding his head. So I sat next to him (or he sat in my lap) throughout the whole day. For dinner, I told him that I will be right back and just have a quick dinner with the others but that I see him the whole time, so he shouldn’t worry. And as always I told him that I love him.  I did not expect an answer but he literally squeezed the answer through his lips: „Love you too…. “

Right now he is fast asleep next to me … on my right hand side….left hand side it is Mika’s turn 😉

The biggest Thank you to our wonderful palliative care team today!!!!! We would be lost and definitely not at home without them!!!

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9th of November 2015:Love is….

Love is…..

….to smile even though your heart threatens to break. 

….to smile back even though you are in agony. 

…to play a board game even if you rather want to break down. 

….to play a board game even if you are breaking down. 

….to be a part of the family even if you can’t take part anymore.  

    
    
    
    
    
    
    
   
   
    
    
    
    
    
    
    
    
    
    
    
    
     

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

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November 1st 2015: Moments….

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 !!!

39 Comments