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

Friday, October 2nd 2015: good days and bad days….

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 😉

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