Under The Knife – Return Of The Nerds 2

Last Saturday, our son had an amazing day, thanks to the Nordic Garrison of the 501st Legion. You can read about his first meeting with them here.

Completely unaware of where we were going, and what we were going to do, Ravn went with me to town. First we met up with his older sister, Christiane, and then we went to Outland, Oslo’s finest comic book and games store.

It soon became obvious for my son that all was not as it should be, since he heard some familiar heavy, mechanical breathing. He pulled out his lightsaber just as he walked around the corner of a books shelf and stood face to face with Darth Vader.

It soon became clear that Lord Vader wasn’t about to fight Ravn, but present him with gifts, courtesy of his friends in the Nordic Garrison.

Ravn got a Lego Star Wars X-wing Fighter set and an iPad with a personal inscription. I was moved to tears as they presented Ravn with the gifts and Darth Vader, a Royal guard and an Imperial commander posed with him for photos.

We also had a photo session outside the Outland store, and a lot of people wanted to have their picture taken with the Sith Lord and his companions.

Ravn even fought a Sand Trooper, who was terrified of the young Padawan’s fighting skills, both with the Lightsaber and the Force. He had the time of his life.

Almost all Sunday, we built the X-wing Fighter, and he’s played a lot with it since. He’s back at the hospital with his mother now, since he’s starting new treatment tomorrow morning. We’re almost back to normal everyday life now, three months after the kidney transplant. Ravn and my wife Katrine are only at the hospital for two sleepovers a week now, which means they are at home five days a week instead of two. Slowly we’re getting our lives back, and hopefully we can soon all go on a holiday together.


In the meantime it’s great to know that people care about our boy and that he’s not only getting the best medical attention the world can offer, but he has people all over the world rooting for him, and hoping he’ll get well.

The 501st Legion and their Nordic Garrison are true heroes or, as they say, bad guys doing good. Be sure to check out their Facebook page, like it and show them some love.
501st Legion
Nordic Garrison

Under The Knife – Return Of The Nerds

I love nerds and geeks, and there’s a very clear reason why. Among all the different kinds of people I’ve met, few are more passionate, compassionate, likeable and generous than nerds and geeks.

Today my youngest daughter and I went to the hospital to see my son and my wife. The last month has been extremely trying and tough for all of us. My son has had some really rough weeks after the kidney transplant and has been in dialysis almost all day up until this Monday. Luckily things are better now. Much better. And today he had a surprise visit from a galaxy far, far away.

The Nordic Garrison of the 501st Legion are Star Wars fans who have taken it to the next level. They do charity work, showing up at hospitals and children’s birthday for free, asking no financial favours for what they do, but encouraging people to donate to charities. Today it was my son Ravn and the children who have to spend the warmest days of summer in a hospital who got a visit from The Nordic Garrison.

There were some technical difficulties to begin with, some costumes needed mending and everything was delayed about a half hour, but you can imagine my son’s face when a stormtrooper, a sand trooper and a royal guard exited the elevator to the tune of the Imperial March. Ravn was a bit hesitant, but quickly warmed up and shook their hands. Some of the other children need some more time before they were less skeptical, but as soon as the brave soldiers of the 501st started handing out gifts, they understood that they weren’t really all bad.

It took Ravn some time to understand that he was the guest of honour and that I had asked a good friend of mine if she could put me in contact with the Nordic Garrison so they could visit him and the other kids in hospital at a time when most of their friends are away in holiday all over he world. Proud as a peacock, Ravn marched ahead of his own little troop of soldiers, while we parents handed out gifts to kids and took group pictures for dads who themselves had grown up with the Star Wars films.

The whole thing culminated in another surprise for Ravn. Our three newfound Imperial friends had some extra gifts for their guest of honour. He got a school backpack, a pencil case, drinking bottle and lunch box, original posters from the original trilogy, a suitcase with wheels and a Lego version of the Mos Eisley space port, complete with Luke Skymalker, his speeder, Obi-Wan, Han Solo, Greedo and a sand trooper. There’s an extra surprise in store for him, but that will take a little more time, so I’ll leave you, like him, in suspense. Suffice it to say that Ravn’s story generated at landslide of donations at this year’s DesuCon and that there is one more treat in store for our son, who has had two really tough years. He’s also been invited to meet more members of the Nordic Garrison in November at the big gaming convention in Lillestrom, just outside Oslo, and to meet even more troops and troopers at the next big Star Wars gathering at Legoland in Denmark in 2015. I am at a loss for words.

Ravn and his little sister, Kari have had a fantastic day today, and so have their parents. After two years of fear, hope, lost hope, changes, sorrow and lots of ups and downs, we had a perfect day today, thanks to a group of wonderful nerds who use their spare time to make kids who are left out feel less left out. Brave troopers of the Nordic Garrison, I salute you!

 

You can like Nordic Garrison here.

 

 

 

Under The Knife – Suffer, Worry, Repeat

My son is fast asleep next to me. His breath is swift, but even. I exhale had close my eyes. Suddenly he wakes up, coughs and exclaims “Daddy, I’m not feeling well. I think I need to throw up!”

Since the transplant he’s hardly eaten and hardly held down a drop of water. I’ve lost count of how many times he’s been sick this last week. He’s been under anaesthetic two more times since he got my left kidney. The first time (I don’t remember which day that was, I’m on heavy painkillers, time lapses and memories mix) to get a dialysis catheter inserted. The second time, today, to insert a tube in his bladder, check that the kidney is correctly “wired” to the bladder and do a biopsy on the kidney.

Our boy is a very intelligent and inquisitive young man. He needs to know exactly what’s going on all the time, and understands a great deal. The medical team like him a lot, because he is cheerful, entertaining and easy-going. However, his inquisitive mind also to his disadvantage, since he can’t manage to relax and just be. I know who he gets that from, because neither can I.

Donating a kidney is basically going to hospital to get sick. The doctors and nurses have prepared me very well for the procedure, the stay at the hospital and the weeks of recovery. I have read a lot, done a lot of soul-searching and now, when push comes to shove, I fail at the main task: relaxing, letting go and just being.

It’s not my job to take care of him now. It’s not for me to fret for him and worry about him. I’m sick now, and I need to gain my strength, but I’m no good at that. So I do what I’m used to. I suffer, worry, repeat. Suffer, worry, repeat.

This needs to stop now. I’m a patient, so I need to be a patient. And I need to be patient. I owe it to my son to recover, so I’m strong when he gets back from hospital. And I owe it to myself to let go, so he will learn to let go.

Under the Knife – Post Surgery

Today is the day after surgery, and even though everything has gone well with the transplant, our son isn’t responding optimally yet. He’s not peeing as much as expected and it’s possible he might need dialysis. His body has accepted the kidney and he peed a lot yesterday, but today he hasn’t peed enough.
We’re hopeful that a couple of dialyses will help, and they’ll be inserting a dialysis catheter in six hours’ time.
Our little trooper is a bit too grown up for his own good, wanting to have control over the situation and asking questions all the time. Right now he’s asleep and we hope that will be enough for him to get better. We are in good hands and rest in the knowledge that we have the best free health care in the world.

Under The Knife – The Day Before The Day

Tomorrow is the big day. We’ve been at the hospital since yesterday morning and gone through the last leg of the screening process. The doctors have even made absolutely certain I’m ready to give away one of my kidneys. From time to time they experience that people almost get as far as the operating table and then get scared and back out. I understand why. It’s quite scary to willingly “get ill” so that someone else can get well. And even though you know it’s the right thing to do, you do a lot of soul searching. At least you ought to do a lot of soul searching.
I’m lucky to have my health and I’m also lucky be at my healthiest when I’m in my forties. I’m lucky to be compatible and to give my son the gift of life for the second time. I’m lucky to live in one of the safest countries in the world with free healthcare, and I’m lucky to have caring family and friends around me.
Tomorrow my son and I will be part of each other’s lives in a way few get to be. How amazing is that?

Under The Knife – Prelude

Let’s be honest: I’m scared shitless.
Not for my own sake, at least not any more. No, I’m scared on behalf of my son, because in four days’ time he’s going to experience the most challenging day in his life. So am I, but I’m an adult. I’ve been around a bit. I can handle it.

On Wednesday he’s finally getting one of my kidneys. First they’ll remove his kidneys and then they’ll take one of mine and give it to him. And I’m scared.
I had my rounds where I faced my own mortality. One does in situations like these. One gets scared because, truth be told, we don’t want to die. We want to live. Over the last few months a lot of demons have popped up, and I’ve had a face-off with each of them as they came along. My dad’s illness and death came back, to show me I hadn’t really finished dealing with it, and my pre-teen fear of dying returned with a vengeance, because, vainly enough, I contemplated my own mortality. I’m not above that, even when I know the cause is good, and I have the unique opportunity to save my son’s life. I don’t think anyone is above that. It’s our ego talking, and ego doesn’t want to die.

I also realised one thing: when you are faced with the possibility of your own demise, you don’t automatically start living life to the max. That is, at least for me, just a nice story we like to tell each other, because it makes for a good tale. I became numb and passive, almost apathetic for quite a while. I also started blaming myself for being selfish. Here I was, saving my son’s life, and I was worried about myself? What arrogance! What selfishness! What an ego!

I understood later that it was all part of the process. I’m not going to die, but I’m literally losing a part of me, a physical and very real part of me. That loss must be addressed and the way we do that, is grieve. So I have been grieving, for the loss of my kidney. Why? Because I needed to.
I also needed to tell my ego that once it had had its fill, that was it. No second helpings. From here on, it’s about him; my son. From here on, I am preparing my kidney for its new life, as a part of my son’s body, and I am telling my kidney that it will be of more use to him than me.
I’m counting my blessings, each and every day. I get to give my son his life twice during his lifetime, and I get to see him grow up to be a proud, strong man with part of me in him. That is a huge honour.

I still worry, but I worry for him. His seven year old body is about to receive a strange organ, that initially will be treated as an intruder. There will be a fight in his body, a fight the doctors and nurses will help him win, and that fight will be a tough one. Yesterday morning he finally admitted he was scared. He told us he hadn’t wanted to tell is, because he didn’t want us to worry. I told him that worrying is our job and that that’s why we have parents, so they can worry for us while we grow up, and we don’t have to.

In the course of his short life, he’s experienced much more illness than I have. I have never been a patient at a hospital before. I have never been under sedation and I have never undergone surgery. He has. On Wednesday evening, we will be even more closely connected than we are now. Life is so much more fragile and so much richer than I could ever imagine.

Recipe for a good Saturday

Burgers and ice cream
I spent most of the day yesterday making food and I thought I’d share my recipes with you.
We had burgers with onion rings, blue cheese sauce, white beans in barbecue sauce and crisps.
Apart from the crisps, burger buns and mustard, everything was home-made.

Burger with onion rings, white beans in barbecue sauce with porter, blue cheese sauce, aquavit jelly and Lay’s Sourcream and Onion Crisps.

 

Burger patties

Ingredients
500g minced meat
1/2 cup red wine
1 tablespoon flour
1 egg
1 pinch salt

Mix the ingredients, make six patties. Fry them in a frying pan for approx six minutes, turning them regularly.

Onion Rings

Ingredients
1 onion
250ml pale beer (I used an IPA)
2 – 2 1/2 dl flour
1/2 tsp baking soda
1/2 tsp salt
500ml rapeseed oil (for deep frying)
pepper and chili (for seasoning)

Cut the onion into rings and set aside. Mix the beer, flour baking soda and salt with a mixmaster. It should be approx. the same thickness as pancake batter. Heat the oil and dip the onion rings in batter, frying no more than five at a time. Turn the onion rings a couple of times with sausage tongs until they look done. Place them on a plate, preferably with a piece of kitchen roll to absorb the leftover oil. Season with pepper and chili powder, or your seasoning of choice.

White Beans in Porter Barbecue Sauce

Ingredients
1 can of white beans
1 can of tomatoes
250 ml porter beer
1 tsp sugar
1/2 tsp liquid smoke/smoke flavour
1/2 tsp salt

Heat the tomatoes and add the beer, sugar, liquid smoke and salt. Let simmer for 5 minutes. Rinse the white beans in cold water, chop them in half and add them to the sauce. Let simmer on low heat for 10 minutes.

Blue cheese sauce

Ingredients
75g blue cheese (stilton if you like it strong)
150ml sour cream

Heat the sour cream until it is boiling. Add the cheese and stir well. Let simmer on low heat until it thickens.

I served the burgers with some Dijon mustard on the bottom bun, blue cheese sauce on the burger patty, and the white beans in barbecue sauce, aquavit jelly, onion rings and Lay’s Sourcream and Onion Crisps on the side. I had a glass of Chilean Red Wine, but of course a hoppy IPA can be a great beverage to enjoy it with as well.

Now, for dessert I had another home-made treat:

Caramel Brittle and Bacon Ice Cream
An acquired taste, but in my humble opinion the best way to finish off a burger meal, this treat combines caramelly sweetness with bacony deliciousness.

Home-made ice cream with caramel brittle and crispy bits of bacon

Ingredients – Crisp-fried Bacon
2-3 strips bacon
butter

Melt butter in a frying pan. Cut bacon into small pieces and fry on high heat until crispy.

Ingredients – Caramel Brittle
200g butter
250 ml sugar
1 tsp salt

Melt the butter, add sugar. Let simmer on high heat until the caramel darkens, add salt, lower temperature and let simmer until it thickens. Pour out on some aluminium foil and allow to cool.

Ingredients – Ice Cream
2 eggs
200ml sugar
200ml cream

Mix eggs and sugar until stiff. Whisk the cream and add the egg/sugar mix carefully to the cream. Pour into a freezer-proof container. Break some of the caramel brittle into bits and add to the ice cream mix along with small pieces of crisp-fried bacon. Put in the freezer for 5-6 hours, stirring the mix carefully every half hour or so, to keep ice crystals from forming.

Ice cream with bacon is not everybody’s liking, but I love the salty taste it gives and think it balances the sweetness of the caramel and ice cream nicely. It’s perfect after burgers. If you want something to drink alongside it, I recommend an oatmeal stout or a chocolatey porter.

Enjoy

Project: Life. Days 333-361.

This morning was filled with the joy and laughter of happy kids.
In our house, that’s rare, because of our son’s illness and the toll it takes on his energy, leading to wild mood swings. Most mornings are a struggle for all of us, and most of all a struggle for our son, who has to battle a mix of hunger, fatigue and general discomfort that comes from having a kidney disease.
Today was different. Today I got up and while on my way to the shower, I heard two happy children whispering and giggling in their respective beds. I was quite sure they’d be there to greet me once my morning ritual of showering and getting dressed was done, but instead my son’s head popped out of the door opening to their room and asked if it was OK to get out of bed.
The rest of the morning was a lovely mixture of happy laughing and singing kids, a good cup of coffee for me and breakfast for them. My wife got up a little later than usual and when it was time for me to walk our son to school and we said good bye to his sister and mum, we’d had one of the best mornings since he got ill more than two years ago.
I walked and half ran after my son, who’s really starting to master his kick-bike all the while having a nice chat about, well, nothing in particular, really, and we took time to soak in the splendour of a beautiful crisp spring morning.
Arriving at school, I hugged him goodbye and told him how much I love him, before I went, filled to the brim with happiness and inner peace, to catch the bus.

Mornings like this don’t come too often. I am eternally grateful when they do. They show me that all the love we show each other, especially in those really tough times, when everything is wrong, always wins. Love is, as Elisabeth Fraser sings in Massive Attack’s song Teardrop, a verb.

Love is a doing word.

Massive Attack – Teardrop

When my wife and I first met at a festival in Sweden, I played the entire Mezzanine album to her. Since then, Teardrop has been our tune.

Project: Life. Days 294-332

It’s Friday, it’s past nine in the evening, and I’m sitting in the living room in the dark, watching TV and writing. Our youngest daughter is sleeping on the couch. She’s been home from kindergarten with her mum today because she’s been throwing up since last night. Her stomach has only just settled down a couple of hours ago.
The last four days I’ve been four trips to hospital, all of them in preparation for my son’s kidney transplant. I’m with almost 100% certainty eligible to be a donor. Almost because they’re awaiting results from today’s CT scan of my kidneys to make sure they’re 100% OK. All other tests show I am in very good shape, actually in better shape than I thought myself.

The last 24 hours I’ve worn a blood pressure monitor and undergone a CT scan. The last three weeks I’ve taken more blood and physical tests than ever before in my life. It’s taught me to really value my health.

Our son’s focal segmental glomerulosclerosis has been the main focus of our family since he got the diagnosis. His kidneys are slowly dying, and to avoid endangering his health, the hospital has agreed to give him a kidney transplant this summer. I’m giving him one of mine.
I keep repeating that to myself in my head, because I think it is amazing. I’m giving him one of my kidneys.
He can get one of my organs, and with the help of medication, he can live a healthy life with one of my kidneys for at least 18 years. There have also been cases where people have had a transplanted kidney for forty years! It’s quite simply amazing.

When the procedure is done, our son will get better relatively fast, because kids regenerate quickly, whereas I will need more time. At least six to eight weeks of sick leave and if there are complications, maybe more.
All of this is paid for by the state. Our tax money to ensures that we get this done without having to pay any money at all ourselves. If I get ill later on in life because of the procedure, all medicine and medical aid is absolutely free. That is just fantastic.
There are of course som risks involved, but that’s true about a lot of things in life. That’s also why I’ve been to the hospital more than five times over the last two weeks. The hospital needs to be certain beyond any reasonable doubt that I’m fit to be a donor. Even my sister’s malignant hyperthermia, a condition that almost sent her into a coma when she underwent a tonsillectomy, is taken into consideration. Malignant hyperthermia is caused by some forms of anaesthetic, so they are taking every necessary precaution there as well, to ensure I don’t suffer from it during the procedure. Our son has already had two procedures where he’s been under sedation, so he’s in the clear, but they aren’t taking any chances there either. We are well taken care of.

My remaining kidney will have to do the work for two kidneys, meaning that I need to make sure I stay healthy. Today I was also told that I have a somewhat reduced kidney function, nothing out of the ordinary (many men my age have much more reduced kidney function and certainly a great deal have much worse health), but it means that I need to look after myself. There’s nothing that indicates I won’t be able to live a long and healthy life.
And so will our son. Eighteen years with one of my kidneys and then another eighteen with one of my wife’s. Then he’ll need a kidney from someone else, that is, if medical science hasn’t progressed to the point where they can be grown. And that seems to be on the way already. I’ve been motivated to exercise more and eat even more healthy than I already do. My wife’s and my enthusiasm for health and staying in good condition is starting to rub off on our children. It’s the best gift we can give them and ourselves.

One day in the near future, we will have a normal family life again. Our son’s need for medication will be reduced by more than 80% and much of the discomfort that leads to frustration, anger and sadness now will be a memory. One day in the near future, our two little kids will be running around in the garden, and our son won’t be exhausted every day he comes home from school.
Two years ago, this part of our journey began. Two years have passed, and we have gone from insecurity, doubt and fear, to certainty, optimism and hope. We count our blessings every day, for being so lucky to have been born in a country where medical help is free, and it is the best help available in the world.

Oh, and one last thing: become an organ donor! It’s the greatest gift you can give anyone. I’m not only giving my son a kidney, but in the event of my death, I’m giving away my organs to people who need them to survive. You should too!

Project Life. Days 274-293

I’ve started exercising again. Yes, I’m a rather on-again off-again kind of person, I’m the first to admit that, and now I’ve started on a 31 day Pilates challenge. After that, I’m considering going back to TACFIT. 
I’m doing it mainly to be in the best shape possible for the upcoming kidney donation. 
Some time this June, I will be donating one of my kidneys to my son. That’ll be the end of his kidney disease, the doctors tell us. That is, it will most likely be me. The blood samples from my wife and myself show we are both compatible as donors, and since I’m the oldest, I’m the one to go first. A transplanted kidney lasts an average of 18 years. My son and I will need a couple of months to recover, and I’m quite certain that if I’m in the very best shape possible, my recovery will go quicker. 
The other benefits are obvious. Already after three days, I feel less stressful and more relaxed, and even though we’ve hardly slept for the last week or son, I feel more rested when I get up in the morning after exercising the previous evening. 
I think it’s a good idea to document what’s going on these months leading up to the transplant, so I’ll be updating here on a more regular basis from now on.