Luka Luka Luka Luka

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

DUBAI

Burj al Arab

pretty in orange !

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

Nite, nite !

The morning after...

cause I'm happy....

Atlantis-Hotel

r e s p e c t !!!!

and finally l o v e !

;)

Bye-bye Dubai :(

First Communion Luka

f a m i l y !

all those gifts !!!!

and more...

Think he likes gifts more...

...than church ;)

After all...a fantastic day !

After the scans last week and the tumor board (where all doctors together are discussing the scans and what to do) we had a long conversation yesterday. From the tumor side, the results for lungs and head are looking ’not too bad‘, meaning all metastasis in Luka’s head are either decreasing in size or stable in size. No significant new metastasis to see, only two spots to be controlled in the near future. After all we have been through in November up until February, where the tumor and metastasis have been growing like weeds, a very good result. The 3 metastasis in his lungs  are unfortunately increasing slightly in size (after a decrease in February), but no new metastasis to see. All in all a ‚quite‘ good result for this stage, especially giving the shape that Luka is in but as well always depending from where you are coming and what you are hoping for….

The major problem we are having now, is that Luka is in severe pain (again). It started in January for the first time and actually on the day of his first communion, it came back again. The CT revealed that one of the vertebra in his spine collapsed (quasi ein Bandscheibenvorfall zwischen den Schulterblaettern). This was where the primary tumor was located (6 years ago (6 !)…). The vertebra between his shoulder blades has been treated with intensive radiation (Strahlentherapie) 5 years ago. The current CT shows that the upper side collapsed and pinches the nerv, which gives pain in chest and back.

This collapse could be either a result of the former radiation therapy and chemo (a side effect over the years), but given the fact that the primary tumor started to grow in this area, it could also be a result of new metastasis which are destroying the bone…. Now we need to handle the severe pain and we decided to go for another MRI to get a more specified diagnosis. I just want to know what we might have to deal with if it is not a side effect of radiation….

As you can see, the story continues with a new chapter and we are trying keep our heads above the water (and feet can’t touch the ground ) ….currently I am struggeling a bit on that ….but only for the moment because I can’t bear seeing Luka in pain, especially after the last 2 wonderful month ! Let’s get the pain under control and stick to our slogan:

Falling down – getting up – straighten up the crown and walking on 😉

Hinfallen – aufstehen –  Krone richten und weiterlaufen 😉

Dubai was fantastic, we spent a terrific first communion of Luka a week later and now that all the things we were looking forward for so long passed by so quickly, we are terrified and waiting for the scans. Thursday we will have the MRI of his head to see what the brain metastasis are doing. Friday we will have the lung CT for the lung metastasis….. I am scared and paralysed and not able to think clearly.

As I found out in Dubai that my iphone is a ’non swimmer‘, I am currently off-line and can’t take any pictures ;( . I am still trying to recover the data (including videos and pics !!) Hope to update you with good news from all sides soon…..
Now we need all luck and prayers on earth !

after some busy weeks with chemo, school and other stuff we are about to board to a one week trip to Dubai….this should be good news enough for now 😉
I will update with more info once we are back and for now we are wishing all of you a nice easter break. We hope to find some eggs in Dubai !?!

Sitting here, right now and looking back at those past few weeks, I would have to describe my feelings with disbelief, agony, astonishment, joy, pain but definitely blessed ! Only now, I am wondering how we got through this period of time, how we were able to cope with Luka feeling so unwell, fading away,  especially when end of January everybody expected the worst…

If this is the worst, I want more !!!!

Cheeky monkeys !

Luka is at school, fighting with homework, tests, his class mates and siblings and he is playing outside like every other child !

As always Luka did decide to take his own way. He is as unpredictable as always and when the doctors confirmed the encouraging result of shrinking lung metastasis of the last scan in February, Luka obviously took his own turn.

We spend a wonderful time in London, Luka had his birthday party with his ‚London mates‘, lunch, movies, cake and playtime…… he had his diverse sleepovers (heavily spoiled by their mums ;)), he spent a day at DS London in his former class and he enjoyed every single minute ! Thanks to everybody making this visit so special again !!!!

When we returned back home, Luka continued with the same spirits and by now I would say he is almost back to normal. Unbelievable, given the fact that we started another regimen of chemo 2 weeks ago. The results of the mice trials showed quite some good effects on the growth of the tumors  (the combination of chemo and the one medication he has been starting in December). So we give it another try and hope for the best ! (Die Ergebnisse der Maeuseversuche haben recht eindeutig einen positiven Einfluss der Kombination aus Chemo und eines weiteren Medikamentes auf das Wachstum der Tumore gezeigt)

Looking back now, we found out that Luka had a severe flu, and a pneumonia (Lungenentzuendung) which caused the pain end of January.

But no matter how bad we all felt, what might have caused the lung metastasis to shrink – is it ‚mice drugs‘, is it chemo, is it our alternative practitioner ? – ….my heart skips a beat whenever I see Luka playing , whenever I hear him laughing and whenever he is enjoying himself !  Right now it skips quite some beats !!!

We are even having some cautious and very fragile plans…Luka’s birthday party with his class mates at home on Sunday, a trip to Oberammergau (for the alternative practitioner) and to Majorca (?) in the easter break…..and Luka’s first communion in April…… we are taking it slowly, with respect but joy !

We will have the next scans of head and lungs soon and I don’t even dare to think about it….. so we are concentrating on more important things…..such as building up the trampoline again as spring finally arrived and with preparations for Luka’s birthday party on Sunday !!!

As we have been offline with phone and internet (THANK YOU TELEKOM !) for more than a week and now all have got the flu I will shortly summarize the last 2 weeks:

The cyberknife treatment took place the day before Luka’s birthday (29th of Jan) and Luka was a real star again. Unfortunately he started to be in a lot of pain. His back (between the shoulder blades) was hurting that much, so we had to start a pain treatment, closely watched by the palliative team. This was as well over his birthday, as you can tell from his expression on some of the pics… We had to combine a dressing for pain relief (Schmerzpflaster) with Morphine and other pain killers…..very scary for us but eventually we managed to control the pain so he could enjoy his birthday !

For his birthday he got another special present and we all went to an observatory that evening. It was cloudy the whole day but when we arrived the sky cleared and we were able to see plenty of amazing stars and even planets ! Anyhow the pennyboard seemed to be the best gift 😉

Since the pain did not stop over the next few days we all feared the worst. Luka’s primary tumor was located exactly through his spine between the shoulder blades…so we had another CTscan of his thorax. This was planned anyhow, to check the stage of lung metastasis. I don’t know how we managed to get through that period but we made it and the outcome was astonishing:

all lung metastasis have been shrinking and no new lesions have been found in his upper body ! (die Lungenmetastasen sind kleiner geworden und es gibt keine neuen oder auffaellige Stellen in seinem Oberkoerper !).

One of the metastasis located close to the rib cage could explain the back pain. As well the head metastasis (the one we treated with cyberknife the week before) is not detectable anymore (only if you feel with fingers, we did not do a scan…). This was another news we had to digest…as it feeds HOPE.

Inbetween we managed to taper off all pain killers and Luka is painfree without medications. He is still quite pale (but you should see the rest of the family ;)…) and receiving a transfusion of immunoglobulines today. It seems that he is picking up literally ervery little virus going around. And there is a lot going around currently ! Last week the whole family was stuck ‚in bed‘ (rather in front of the TV) with a flu. So we hope for some improvement next week !

We used the good news to book some flights to London and we will see our friends back there !!!!

Meanwhile we do hope so much for no bad news with regard to the brain metastasis….we might start a reduced course of chemo next week to keep this area under control. But inbetween we use the time to get some british power 😉

This week will be Luka’s 9th birthday and we are all looking forward to friday ! Another milestone, such as christmas and new years before and we will make the best of it 😉

The last couple of weeks could not have been any more rollercoasterlike. We kicked off the new year with a wonderful party and Luka set off fireworks for hours !!! All kids went to bed that night after mum 😉 …. I have the feeling this will be the start of a new era !?!

Beginning of January we had a thorax CT to check on the lung metastasis and unfortunately the existing ones were slightly bigger and a new one was found. With these news we decided to have another break with our alternative practitioner in southern Germany. He is coaching the whole family and bringing out the best in all of us. Luckily we had a wonderful Winterwonderland and I was able to go skiing with all four kids between treatments !!! After all we have been through in the last couple of month, this is something no one would have expected ! We feel so blessed for these days and no one will be able to take these wonderful days away from me and us, never ever ! 😉

The landing back home was rather hard….the boys came back with a nasty cold and sore throat which put them into bed for more than a week and Karsten and I had to think about what to do with the lung metastasis . After some careful thoughts we decided to go for a lung surgery. All metastasis are in ‚favorable‘ positions and with a relatively ‚minor‘ risk and stay in hospital this should have been doable and reasonable. But as you know Luka by now, he has got his own mind…..and he came up with a new lump on his head ;(

The MRI last week showed a new local relapse, a new tumor next to the operated area on his head. Most likely soft tissue and bone….. It showed as well more potential lesions, meaning there are most likely more tumors to come soon…

On the other hand the MRI revealed a very positive news as well. The tumors we treated with the cyberknife in December have been reacting very good ! One is almost gone, the other one halved in size ! Anyhow, we have to deal with the new situation, as always.

To keep things short: we cancelled the lung surgery, no need to put Luka through this, at least at the moment. We had a lumbal puncture last Thursday to check if there are any tumor cells in his liquor (the fluid that runs around the brain and his spine). This would have been really bad news…but it turned out to be clear !  So we all decided to go for another cyberknife treatment. Since Luka reacted so positive last time, we hope for the same effect this time. And on top it is ‚just‘ a few hours treatment that Luka tolerated very well.

The last 2 weeks have been a disaster emotionwise. Not only the news about the progressing disease (I mean we know what we are dealing with….) but also the fact that Luka came down with a flu and he felt really poorly. You automatically think it is not only the flu…it is the progressing disease…..Even with Mika lying next to Luka, feeling poorly as well it was hard to convince ourself that this is not the beginning of the end.

But now back to normal:

Luka is at school today, requesting a buffet for his birthday party („What kind of buffet, Luka ?“ “ Oh mum…an all you can eat buffet !“). To the question whether he wants to stay in Germany to celebrate carnival (for the first time in his life ;)) or rather visit friends in London he spontanously answered: „Both !“

Tomorrow we will have the MRI and CT planning for the cyberknife surgery which will most likely take place Wednesday or Thursday.

Please do me a favor and have a look at the pictures. The discrepancy between the medical scans and the photos couldn’t be any bigger ! This is exactly why we will go on, as long as Luka is telling us to do so ! And even if the days are sometimes full with fear we enjoy every single day  because there is laughter as well !

Another THANK YOU to all of you, we still have all your cards decorated here…we still read them if we need some warm and cosy words 😉 ! Receiving emails and letters from all over the world, from friends we haven’t seen for ages, we haven’t talked for ages and we haven’t written for ages is carrying us along the way !

We send you lots of love and we are also wishing you all the best !!!!

We would like to wish all of you a happy new year with lots of laughter, love, happiness and health ! In Germany we usually wish a ‚ happy slide into the new year‘ (translated word by word) What this means? why don’t you have a look at Luka’s sliding pictures 😉

We are making the most of everything and we feel very blessed for the year 2014 !!! So let’s slide into 2015 full on !

As I have been blogging throughout the whole year, I decided this christmas to sent no cards ;(  Anyhow, we have been overwhelmed by all cards, packages, mails and texts and I wanted to thank you for all of your support !!!! It gave me goosebumps quite often and if all your wishes come true, then ours will as well and we will have a WONDERful time 😉

I spent the time with the kids, preparing a (hopefully) WONDERful christmas eve that we are all longing for. It has been a busy time for Karsten and I, chasing up our last hope for a treatment option with the antibodies. Today we had to accept that this road seems to be a dead end due to medical reasons… Meanwhile Luka is enjoying himself and getting back to his old cheeky form. And this is what it is all about ! Now we will enjoy the festive times together, what else could be better !?!

We wish you all a WONDERful christmas, make sure you enjoy the time you get to spent with your beloved ones…we will !!!

Oberammergau

a little rest...

now we all go mad !!!

alternative friends 😉 ;)

happy girls...

x-mas countdown

master checf - Chefkoch

full body baking ;)

chocolate helps always

Nikolaus

more crazy friends...riding through town

Cyberknife...starting soon

Cyberknife...while

Cyberknife....while...I am so proud !

Cyberknife ...after

Back home !!!

Next step done….today we had the cyberknife treatment and believe it or not, after two platelet transfusions on the ward (in case of bleeding), 80 minutes of radiation (just the pure radiation time !!!) and in total 3,5 hours in the ‚cyberknife‘ we have been watching ‚Frozen‘ at home and all together 😉 😉 😉

Anyhow last week took it’s toll after Luka started complaining about headaches. We started steroids (Kortison) right away to prevent and eventually reduce any kind of brain swelling. Then we had to speed up the cyberknife treatment that was initially planned for later this week. The MRI and the CT were already done last Friday and unfortunately showed further progression of the brain metastases into a range that is not really ‚cyberknifeable‘ anymore. Nevertheless, we decided to continue with the cyberknife treatment (an operation was considered as an alternative) and here we are !

The decision for the cyberknife treatment was not as straight forward as it sounds but the choices were limited and since we aim to have some more of the good times we went for it. Now we are facing for a few days the risk of seizures (epileptische Anfaelle) – which we actually did before as well (due to the metastases). Then we are left for a while with the risk of the mets still growing if they don’t respond at all. After 6-8 weeks an additional risk of brain swelling is coming up….after 6-8 month even more risk…… hopefully we will cross the street safely tomorrow with all this risk !!! We did it, we would do it again and we will cope with the rest !

So the plan for the next days is to start the Pazopanib treatment which is aiming to control the growth of the malignant cells. The Pazopanib is the medication we had actually tested in the mice that grew Luka’s tumor and they reacted positive to it. So let’s hope that it will do the job at least as good as in our ‚million dollar‘ mice !

While we are doing this we are still pushing forward the antibody treatment and it seems we have been getting some movement in…

For tonight we hopefully don’t have to move anymore !

Just to explain the pics: We did have some good and ’normal‘ times as well inbetween and next to ’normality‘ such as tummy bugs ;( , exams at school, food shopping, dirty laundry  and all this nonsense we were able to spend a wonderful weekend in Oberammergau (Southern Germany). We had some fantastic days exploring alternative treatments 😉 and alternative surroundings ;)…and we met some crazy friends ;)… (or should we have a look for some alternative friends as well ???)