Back home to Stenhamra :-)

I decided to write this in English while many of our friends are from foreign countries and it is not fare that they won't get the updates on Benjamins state.

Today we got back home from the hospital and Benjamin is the happiest guy in the world coming home to his siblings, father and home surroundings (in Sweden - he is not so sure what relation he has to Sweden he told me today; he likes living here but he is not sure he would like to live here for 2 years - well, sorry to say (and I didn't tell him), we don't know how long we will live in Sweden, but as long as there is hope for cure here in Sweden we will stay!!

 

Many of you might not know that Benjamin was diagnosed wth  a very rare and difficult lung-disease (Bronchiolitis obliterans)  in the beginning of the summer 2010 and therefore we rapidly moved to Stockholm, Sweden, at the end of August 2010, while the hope for cure is not large but at least there is a hope here in Sweden and Benjamin has got all the best specialists available to treat him.

Benjamins condition today is that he is heavily treated with Prednisolon/Cortison - in very large doses - while this is one of the medical protocoll when trying to treat BO, and he has now been on HUGE dosis for 5 months, much longer than was the original intention (so his immunesystem is very weak and he is having a lot of side-effects from such a heavy and long Prednisolon treatment) + he is now using around 6-8 other medicaments twice a day, one of them being another immunesuppressive medicine used after transplantation (a little bit "nicer" than the one he used after both of his bonemarrowtransplants that cured his cancer).

 

Being medicated like this, Benjamin is like a spounge - sucking everything into he is immunesystem (he would love if I would name him Spounge Bob ;-)) - and last Tuesday we got the first smell of how sick he can become while his system is in a "latent" state. He had a whole day at the hospital, having "regular" bloodtests on Monday (checking the levels of Cell Cept in his blood - has to be very accurate), on Tuesday he had an appointment for a new liver ultrasound (the doctors had found a knot in his liver, so they wanted to do another one using contrast-liquid to better see what it could be). Benjamin had quite a lot of others things done this day, started to feel nocious at lunch - which I connected to the morphine he got in the morning - started vomiting but we went home and came home around 15 pm.

Unfortunately this shows how weak his immunesystem is - he rarely meets other people because of the danger of infection, and then he (probably) gets a virus at the hospital (Rota-virus) - so at 19 pm on Tuesday he had been vomiting so much and his face was completely grey and he was almost unconcious - so there we were again! Packing the bags rapidly, ordering a cab to get him to the Emergency Unit (couldn't leave our other children home alone, getting scared in a foreign country).

The short of the long - in all 7 years I have seldom seen Benjamin so sick, (maybe 10 to 20 times in all his history of illness), he was completely unconsious, his bloodtests showed that his body was "lethally dry" and in the doctors faces I saw anguish (they didn't know our Benjamin) and fear. Finally getting two needles into his body, to give him fluid, and then shooting 100 mg of some type of Prednisolon (in a trial to wake his body up), they had decided to put him to the ICU and were just going to move him over there - my guy suddenly woke up and said: "Mom, I am really happy with myself - this morning my stomich really hurt but now it is feeling better"!!! The doctors faces just became one big smile and they didn't believe what they were seeing (don't know our Benjamin, you know :-)) - there he was, having beeing completely "out of it" for several hours and when decided that he had to stay at the ICU he definetily wanted to have a say about this!!!!

This time we only stayed for 3 days at the hospital (the Rota-virus is a liiiiitle bit kinder than the Calisi/NorWalk) - got home on permission this afternoon, and I have one happy guy eating Dorritos, drinking Pepsi and Coke (with sugar - just for a few days while his sugarlevels are to high), waiting for Chicken Nuggets......and of course enjoying life and laughing his ass of because he LOVES LIFE and WANTS TO LIVE IT TO THE FULLEST!!!!!

Remember this, our dear friends - LIFE IS FOR LIVING IT, EACH MOMENT IS IMPORTANT, so try to take Benjamin as your mentor and LOVE and ENJOY LIFE!!!!!!

 

 

 

Athugasemdir

[Vala (IP-tala skráð) 17.12.2010 kl. 21:00]

Regnbogakærleiksljós til ykkar elsku Eygló.. Knústan smá frá okkur Freysa.... *RISAVÖLUKNÚS*

[Gurrý (IP-tala skráð) 17.12.2010 kl. 21:09]

Gott að þið eruð komin heim :) hugsa til ykkar með hlýju :) Kv.Gurrý

[Gunnur og co (IP-tala skráð) 17.12.2010 kl. 21:35]

Þvílika hetjan sem hann Benjamín er og þið fjölskyldan öll, sendum okkur hlýjustu strauma og batakveðjur.