Tuesday, August 31, 2010

- and half a banana

Today's total amount of food added up to one yogurt and half a banana, which of course is half a banana more than yesterday, so it's progress.

Sigve went for a walk with the physiotherapist, but when he sat up to eat afterwards he started feeling sick, and went back to bed.

He also started getting Sandimun (medication to prevent "graft-versus-host disease") pills today instead of iv, which means that he doesn't have to be hooked up to Hangman from 4 pm to midnight every day any more. It makes it so much easier to get out of bed and move around. Hangman's a nice guy, but he's clumsy and awkward and he has 2-3 cords that need to be unplugged every time. The drip counters that are attached to him have very short battery life, and they beep, first when they are unplugged, and then a little while later when they want to be plugged back in.

Fall is closing in on us. What happened to summer? I have cleared the deck, and put away the furniture. Some leaves have already turned brown, and fallen off the trees. These are birch leaves.

The days are getting shorter. Sunset is around 9 pm now and it's dark by 9.30. Time to light candles and enjoy the longer evenings.... Can't wait for Sigve to get back home and enjoy them with me...

I have dabbled in the art of hair dressing today, or rather been dabbled on. I was in bad need of a hair cut, but did not have time for it during any of these days at home, so Hilde Marie had a go at it. She usually cuts Jon Helge's hair, so I thought maybe I would end up looking like him :-) It turned out pretty good, short, very short, but good. I may get used to it :-) It's practical though.

Today I am grateful for:
*Daughters with hair cutting skills
*Wine and candlelight
*The possibility of an early night for once

Monday, August 30, 2010

Bed rest and yogurt

Today's report is by phone again. Sigve tells me that he was not allowed out of bed today as his platelets were down a bit. So he got a transfusion, and hopefully they'll be up again tomorrow. Otherwise things are going well, and the progress is good. The crp keeps going down, but as it is still higher than normal, he gets more antibiotics. The white blood cells keep going up.

I mentioned that I thought his voice sounded clearer than it has done lately, and he said that it's maybe not quite as sore any more. It's still dry though.

This morning he felt a bit unwell after having been up for his shower, so he didn't eat anything for breakfast. Around lunchtime he had 125 ml/4,2 fl.oz of yogurt, and was quite pleased with himself. That was it for today, though. Baby steps.

Have you heard that dogs and their owners grow alike as the years go by? Well, here's proof:

These two love each other. Unfortunately it's still a long time before they get to see each other again. No dogs are allowed in the house for at least 2 weeks after Sigve is home again.

While Sigve is in hospital Isa lives with Hilde Marie and Jon Helge on their farm at Tysnes. She has company with Aira, their Irish wolfhound, and it's really funny to watch huge Aira and tiny Isa run around together. At night they cuddle up and sleep really close together. I get to see her when I stop by, and she shows uninhibited joy at seeing me, jumping up and down and squealing. Ira is more calm and dignified, she just leans on you and won't let you pass until she's petted. She has the most beautiful, kind, huge brown eyes.

Today I am grateful for:
*Brain dead TV entertainment
*The faithfulness and devotion of our dog friends
*People who may be interested in buying our house

Sunday, August 29, 2010

Museums and grape peelings

On Saturday Hilde Marie, Jon Helge and Geir Espen came up to Bergen to visit. We had planned it as a day of surprises for Geir Espen as he had his birthday on Tuesday. We started off by visiting Sigve.

And Sigve has promised that when I come in he will go for a walk, and so we did. Notice the body guards in the back :-)

Back in bed it was time for some lung exercises. This flute, that the physiotherapist brought in, gives some resistance when blown into, and this helps open up the lungs. Many patients who spend a long time in bed collect fluids in the lungs, which can lead to pneumonia. So far Sigve has not had that problem, and if he manages to get out of bed as much as possible chances are that he won’t get it either.

The four of us went to an interactive science museum and had a lot of fun,

and then to Egon's Restaurant at Lagunen for dinner. We ate well and had a great time together.

Before the three young people drove back home we stopped in again at the hospital to say good night to Sigve.

On Sunday morning Sigve had decided to eat some solid food again, and tried a boiled egg, but he immediately vomited. When I got there he thought maybe grapes might taste good. But as he’s not allowed to eat any fruits that can’t be peeled, I had to peel some grapes.

I cut each in four pieces, and he ate them very slowly, prepared to vomit again, but they stayed down.

Later, at dinner time the smell of hot food made him feel queasy, but he agreed to try some yogurt, and he ate quite a few spoonfuls, and that stayed down too. He had felt very disappointed when he didn’t keep the egg, but after the yogurt he felt better.

While I was there, we walked the length of the corridor several times, and then Sigve sat up in a chair and looked at pictures on my laptop.

All in all he was out of bed for about 1,5 hours today, which was very good. I hope he keeps it up and gets out of bed on the days I’m not there too.

The physiotherapist will be in again to see him on Monday, and the nurses will encourage him to get up and move around. Medically he's doing very well now, so he has to really start doing his job in order to recover fully, and that means to get up and to eat as much as possible. He's still getting some antibiotics, but the CRP keeps going down.

This afternoon I didn't leave the hospital until after 5 pm, and I was too tired to drive all the way home. So I decided to go to Tysnes instead, and spend the night in the camper, and then drive home in the morning. I got to have a lovely dinner with Hilde Marie, Jon Helge and Jon Helge's parents, Britt and Geir.

Today I am grateful for:

*Grapes and yogurts and Sigve's willingness to try solid food

*Good times with family

*The decaf latte I'm having in the camper before I sleep

Saturday, August 28, 2010

A very good day

When I arrived at the hospital today, Sigve was sitting up in bed and stated that "I'm feeling great!" He was laughing, and humming to himself and spoke to several people on the phone.

Later the physiotherapist came in with info about the kind of training and exercises that he needs to do. The important thing now is for him to get out of bed and move around as much as possible. And for the days when staying in bed may seem like the only option, there are still exercises that can be done in bed. The physiotherapist will be coming in every day to help him get started, and the nurses will be helping him too, by urging him to get going.

Sigve had already decided that he would go for a walk when I came, so I got the physiotherapist to help him get on his feet just in case he was feeling unsteady. Hangman had to come too, and it takes a bit of untangling to get him ready.

We walked the length of the corridor twice, which didn't make Sigve neither tired nor out of breath. For a while now, he has to wear a face mask when he leaves his room.

Back in bed, it was time for some grooming. While his hair has been falling out, his nails have been growing like weeds and needed trimming, carefully, and not too close, to avoid cuts and hemorrhaging.

Yesterday I posted a picture of the top of his head, with very little hair left, but still looking fairly even. So before he lay down again I snapped this one of the back of his head. A bit more uneven, to say the least :-)

He's not allowed to shave or trim it yet as the smallest cut could cause hemorrhaging that would need a refill of thrombocytes to stop.
So far he's only lost head hair and beard. His eye lashes, eye brows and body hair is still there. This varies from person to person, but the nurse thought it may still come off.

The lower part of his face looks a bit swollen, so I asked about it, and this was due to the mouth and throat soreness.

Blood samples for testing are taken several times a day from Hicky. I learned a little about the test results today. The leukocytes, (dictionary: a colorless cell that circulates in the blood and body fluids and is involved in counteracting foreign substances and disease; a white(blood) cell. There are several types, all ameboid cells with a nucleus, including lymphocytes, granulocytes, monocytes, and macrophages. Hvite blodlegemer) were at 1,6 today, and the thrombocytes (dictionary: Platelets and other factors present in plasma that are concerned in the clotting of blood, preventing hemorrhage. Blodplater.) were at 24. The levels are still very low, but raising.

At dinner time Sigve decided to try some actual food, and they brought him spaghetti and meat sauce. I got a portion too, and quite honestly, I don't know how sick people, who need nourishing food survive on hospital food. The meat sauce was a thick pasty tomato soup-like substance, with a few little pieces of minced meat here and there, and even fewer pieces of onions over some sticky spaghetti. No vegetables at all. It was all carbs, and no proteins, and no fibers. And it had no taste at all. Sigve tried one half spoonful of it. He also tried one spoonful of the dessert, some kind of fruit soup, and even had a second spoonful of that. Well, at least he tried, and he promised to try something tomorrow too.
As I am living on a low/no carb, high protein diet of fresh, unprocessed fish and meat and lots of vegetables, I would probably starve to death in a hospital!

In the afternoon Sigve's temperature rose slightly, and he decided to dose off, so I went for a walk in down town Bergen, and then I spent another couple of hours with him before I called it a night.

Today I am grateful for:
*Sigve's good progress
*A sunny early autumn day

Friday, August 27, 2010

So very tired

I sat in Sigve's room for about 3 hours this afternoon. He slept most of the time, and only "surfaced" now and then, said one sentence, sometimes only a few words, and was off to sleep again. He can barely keep his eyes open for more that a few seconds at a time. He was feeling chilly too, so they pressurized the room again; for some reason that's the only way to raise the room temperature. It doesn't mean he's back in isolation though. He still has a slightly raised temperature, and gets antibiotics. His right eye was a bit red, so he is getting eye drops for that. Here he is with the flag that marked the end of the isolation period:

While I was there he got another thrombocyte (blodplater) transfusion too, (a yellowish liquid, doesn't look like blood at all).
But in spite of all this he claims he feels fine! He actually sat up in a chair for a while earlier today, and watched some TV. So I asked if he would mind if I had the TV on while he slept, to which he replied that it had been quiet for a week now, and he really wouldn't mind another week of silence :-) Good thing he has his computer there, so I surf the internet while he sleeps.

There's still a little hair left, and some of the mustache, the rest is mostly gone.

Today I am grateful for:
*Norwegian Health Care. A lot can be said about it, and a lot is said, but it's free, all of it, and in Sigve's case it's good
*The wonderful treatment Sigve is getting from all the staff, he feels like a VIP patient
*That he can take all the time he needs to recover

Thursday, August 26, 2010

Happy, but tired

Gerd, your stem cells must be of superhigh quality, and the
match between you and Sigve must have been very close,
as they have settled and started working 
so quickly and so well!
I don't know if that is medically correct, 
but that's how I see it :-)
A good job well done!

This morning the nurses brought a norwegian flag into Sigve's
room to really mark the end of isolation. I don't have a flag picture,
but these fireworks that Birgit sent me will do the job nicely!

Sigve is still very tired, and a professional source (again Birgit) tells me that that is perfectly natural. So incredibly much has and is happening in his body right now. It's working up there on an extreme level. Not many get to perform that kind of extreme sports!

He's still getting refills of antibiotics, and he needs to build up an appetite, but for now iv nutrition is fine. I hope that once he feels more rested and starts to get up and move around, he will feel like eating again. At the moment his mouth and throat are still sore.

Thank God again for Hicky, who has made it very easy to administer everything that needs to be put into him! No need for needles all the time :-) For new readers who don't know Hicky, look back to the introduction in one of my earliest posts.

Finally, another picture from Birgit. This is Sigve in
the seventies, in his family's boat, off the coast of Bømlo.
Sigve, maybe you'll get hair like this again now! :-)

Today I am grateful for:
*The delicious crabs that my niese Monica gave me last night
*The lovely shower I'm about to take now before I drive to Bergen to see Sigve again!

Wednesday, August 25, 2010

Great news!

Sigve is out of isolation!
The number of white blood cells are steadily increasing,
and his temperature isdown to 37.3C/99F this morning.
This turn for the better has happened so fast!
The rash has paled a lot, but his voice still sounds strained.
Now he needs to get out of bed and start training :-)

Not much to report

Not really a lot to report today. Sigve is feeling better, his temperature is down below 39C/102F, and the number of white blood cells are increasing. The "feeling better" part is still when he's lying in bed, once he's up on his feet he quickly gets very tired. But who wouldn't after a week at 40+C/104+F? His mouth is still sore, and now it's a bit dry too, so he often starts coughing when he talks. He still gets blood transfusions, antibiotics and iv nutrition.

Today Hilde Marie and Jon Helge came over to have supper with us as it is Geir Espen's birthday. I made a ham and cheese pie, which has been his favorite food for years.

The birthday boy and his sister:

Today I am grateful for:
*A comfortable bed and that it's time to fall into it right now!

Monday, August 23, 2010

Evening update

Sigve's cell phone died today, apparently it just gave up, so I haven't been able to reach him since this morning. Then fortunately, and thank God for good resourceful friends, Brita and her sister Inger Maren came up with an extra phone that he got to borrow until I can bring him one of our extra ones. Thank you both so much, for the phone and for taking it to him! I get stressed out when I can't reach him.

However, I spoke to one of the nurses, and she reports that his temperature is still up, and he's very tired, but a doctor had confirmed that the rash seems paler today than yesterday, and that the crp was down. I don't know if crp is familiar to non norwegians, maybe it has a different name in english. Crp is short for C-reactive protein, and can be measured in a blood test to indicate the infection level. This protein is produced in the liver and is one of the substances that the body produces to initiate a reaction against infections, and also to directed that reaction to start in the right place.

Then after he got the phone I got through to Sigve, and he reports that in his opinion he's feeling surprisingly well; and that's a statement from someone who has had a temperature of between 40 -41C/104 - 105.8F for several days! The medical personnel also comment on how good his general health is, to be able to handle that kind of temperature so well. So far he's been able to get up and take a shower on his own two feet every day!

A host of doctors have seen him today, and they all seem to agree that the rash is as can be expected, and nothing out of the ordinary. Sigve says that it feels like the whole hospital is there for him!

And the best news of all is that blood tests now indicate that the new stem cells have started to work as leucocytes (hvite blodlegemer) are present! Yeay! There's still a long way to go, and a lot can happen, but this means the walk along Recovery Road has really started.

Today I am grateful for:
*Cell phones (how did we ever live without them?)
*All kinds of improvements
*Our son Geir Espen turning 28 tomorrow

The doctors are pleased

Sigve tells me on the phone this morning that he's feeling better today. The temperature is down a bit, and the rash is decreasing. So it looks like they are giving him the right combination of medications. The doctors doing rounds were pleased with themselves :-)

Sunday, August 22, 2010

Starting to look sick

Last night I went to Tysnes with Hilde Marie, and spent a nice quiet evening with her and Jon Helge. We cooked some salmon and ate well. I got to see the 7 four day old piglets, and they are just the cutest! Tiril, their mom, is very trusting, and I could go into the pen and pet her and the babies without her being nervous. Maybe she remembers me from when she was a baby? :-)

And Isa just won't leave my side!


Back in at the hospital: In order to enter the isolation room we have to put on robes, and either wear the supplied indoor slippers or put paper booties over our shoes. Everything we bring in has to be disinfected, so I leave my purse in the sluice, and wipe down my Iphone and camera and bring them in.

These last 2-3 days Sigve has been feeling weaker. But with a steady temperature at around 40C/104F I think anyone would start feeling weak. However he was more talkative on Saturday than on Friday, when he mostly slept. I've phoned him several times today, but he gets tired quickly and doesn't want to talk for long. He says that as long as he's lying still in bed and just relaxes, he feels fine; he's not in any pain, and the only discomfort is the mouth soreness and the diarrhea. He keeps saying that if it wasn't for the high temperature he would have been fine.

But he doesn't look that well any more. More and more hair is falling out.

Yesterday he had developed a rash and inflammations over large parts of his body. Some spots on his legs seemed infected, so they took samples for analysis. So far there doesn't seem to be any reason for the rash, so they think that it is a desired reaction and sign that the new stem cells have started doing their job. But it makes him look really sick... Apparently the rash is even more red today than when I took this picture yesterday.

It's getting really hard to see Sigve like this. I keep hoping and praying along with all of you for a speedy improvement for him as the new stem cells get their act together!

Today I am grateful for:
*Our wonderful son, daughter and son-in-law
*Places to relax
*Having things to be grateful for

Friday, August 20, 2010

Temperature's up again

This was Sigve yesterday:

And today:

Everything in life goes up and down, and so does this.

Sigve is feeling much less energetic today, and he's mostly dosing off. He felt very energetic last night, and finally fell asleep at 6 am, so he was allowed to sleep in this morning. He got up for a shower at about 1 pm. He showers every day, changes all his clothes, ie. underware and pyjamas, and his bed linnens are also changed every day.

His temp is up to 40.6C/105F (normal at this stage, as he has no immune defence system at all right now), and he's getting more blood, antibiotics and nutrition, and the Sandimun (to prevent "graft-versus-host-disease") that he gets every day at 4 pm, through Hicky now, and then as pills later for up to 1 year.

I'm sitting here watching Sigve sleep, and thinking how strange it is to see him in this situation. Up until 1 year ago, when he had the leg infection that turned out to be how the leukemia was discovered, he had never been sick, except for one night in hospital years ago with some stomach cramps, and the odd cold and flu. And I guess it's the abruptness of the situation that is weird. We've known for a few months that he would have to have the transplant, but he never felt sick! And we have often commented on how strange it is to have to be made very sick to get well. But I guess sometimes it's like that, it gets worse before it gets better! So far I have found it easy to stay strong; sometimes drawing on Sigve's strength, as things have been going so well. He has always had this amazing ability to be able to adapt to any situation, and make the best of it. He told me that when he was told that he probably had leukemia, his immediate reaction was a feeling of gratitude for how good his life has been up to now, and a determination not to let the decease put a damper on whatever time he had left. A lot of us would probably start off with feeling sorry for ourselves...

A nurse just came in with another bag of blood. As his own "blood factory", his stem cells that have been killed by chemo, isn't working any more, and the new ones haven't settled and started work yet, he needs these refills.

And just now a doctor came by, and explained that he's being given increased doses of broad spectered antibiotics to deal with the high temperature. They had had to start off carefully to see if his kidneys could handle it, and test results showed that they could. They also changed the fungus medication to a different type, as the mouth fungus could also cause a raised temperature.

So far many of the nurses have been summer helps, and it seems like they didn't all know all the regular rules and routines for isolation. More regular nurses are back from their holidays now, and things seem more organized.

I got my Mac back today! It is mine, my preciousssss!

- Most of this was written while I was sitting in Sigve's room today. Now I have spent a nice quiet evening with Brita and Ketil. Tomorrow morning I'm off to Halhjem to pick up Hilde Marie. We'll do some shopping, and visit Sigve.

Today I am grateful for:
*Doctors who speak understandably
*A quiet evening in front of a TV
*All your prayers!

Thursday, August 19, 2010

And in the afternoon....

The Mac doctor phoned me this morning to say that the new hinges had arrived, so I went into Bergen to hand in my laptop before seeing Sigve. I feel like I have handed my child over to strangers! So I am writing this on Sigve's laptop, which is not a Mac, and you Mac people out there know what that means. Sigh...

I am visiting Sigve right now as I write, and he is his usual cheerful self. His temperature is up to 39.5C again, but it's not affecting him much. He's retaining some water, and was given a very effective medication for it. 5 minutes later he had to let it out, and then every 5 minutes. Fortunately he's being supplied with bottles in bed as he needs them, and he so enjoys being able to "go" without getting up :-) I can just see it, when he gets home, he's going to want to keep it up as it's so comfortable!

This morning he started the day with a nice very long shower, and felt really good. He can easily pull out hair from his head and moustache now, and it looks visibly thinner. This morning he had fun pulling out all the grey hairs from his moustache so it looks all brown! The rest of his body hair is still stuck, but it will all fall out. He'll have skin like a baby!

Afterwards he had to go back to bed as he had to be hooked up to various iv bags with fluids, antibiotics and "food". (The "food" bag he's getting right now is filled with an opaque white liquid. Looks a bit like liquified mashed potatoes.) He can still swallow pills and some energy drinks, but that's about it. When hooked up to all that it easier to just stay in bed, and he gets to do it since he's running a temperature, but once that's gone he'll be forced out of bed!
He still has a very unsettled stomach, and likes to compare it to volcanic eruptions; Iceland comes to mind... but planes can still take off from Bergen Airport!

During doctor's rounds this morning a student doctor came in tow, and as the doctor was probing Sigve's stomach and Sigve started laughing, he explained to the student that laughter in that context meant that the patient was not in any pain, and it was not a common reaction in this situation :-)

You're not getting any pictures today as I don't have the connection cord for my camera with me. But I have taken some pictures, and I will post them when I get my dear Mac back!

Today I am grateful for:
*That Sigve is feeling so well in spite of running a temperature
*The soreness in his mouth is not quite so bad today
*Mac doctors

Morning report

Sigve reports by phone this morning that he's feeling even better today, as his temperature has gone further down. He's still swallowing pills himself, he's developed a technique to get them down without too much discomfort, but he's not eating any solid foods. Fortunately his mouth is not dry, "only" sore.
So his conclusion is that so far things are a lot less bad than what he had imagined they would be :-)

The sun is not out today, but every time Sigve says he's feeling good, or better, I feel like the sun is brightly shining!

Day "+7"

We have already reached day "+7".
Sigve's temperature is down to 38C/100.4F this evening, and he's feeling better. That means he has received the right kind of antibiotics. When Sigve has a raised temperature he experiences a very distinct line at 38.5C/101.3F. At anything below he feels fine, and as soon as he goes above he has to lie down and feels exhausted. He can tell as soon as he crosses that line.
The entry wound of Hicky is a bit red, so an infection specialist came in to look at it, and now he gets another kind of antibiotic to prevent an infection there. The mouth soreness has reached a level where swallowing food, drink, pills, anything really, is a real challenge. He has some blisters and general soreness. So I assume that for a while now everything he needs will be administered through Hicky. He does antiseptic mouth rinses 6-10 times a day to keep his mouth as clean as possible.
Continual large amounts of liquids keeps causing frequent visits to the little boy's room all day, but they have finally given him a bottle to keep by the bed at night. He also still has rather "explosive" diarrhea.
Today he noticed that some hairs from his beard came off, so it looks like the hair loss has begun.

All of this is normal, expected and prepared for.

Sigve has kept himself awake all day today, not because he has problems falling asleep at night, but because he wants to create a daily rhythm, in order to avoid feeling like everything is one long blur. Neither of us have ever had sleeping problems, and I'm sleeping well too, so far.

Brita and Ketil went to visit Sigve today, and they sent me this picture:

They had to put on protective aprons, put paper booties over their shoes and disinfect their hands. Brita had to leave her purse in the sluice as they want to keep as few things as possible in the room.
The isolation room is pressurized to avoid air from the corridor to seep in, so we go into a sluice, close the door, wait for the pressure to equalize, and then the door into the room can be opened. It only takes a few seconds, and green and red lights indicate which door can be opened. The general rule is that 2 can visit at a time.
I will probably drive up to Bergen again tomorrow and stay for a few days.

Today I am grateful for:
*Hicky and Hangman
*Hot late summer days and cold drinks
*All our good friends (including family members!)

Tuesday, August 17, 2010

Changes, but still going by the book

This afternoon Sigve's temperature went up to 40C/104F. A large number of blood tests were taken, and sent off to the lab for analysis. As far as we understand, it's hard to determine exactly what kind of infection it is since he has no white blood cells left at the moment, (any nurses out there, correct me if we got that wrong!) so he's getting a general kind of antibiotics. Actually, it's probably not that general, really, I assume it must be specific to this kind of situation. He also got another bag of chemo, a blood transfusion and a whole lot of other stuff into Hicky, including lots of fluids because of the raised temperature. The mouth soreness is also increasing now, making it harder to eat, so he's getting energy drinks. Vitamins and minerals are added to the iv fluids.
The nurses assure him that all of this is expected and by the book.

I've spoken to Sigve several times on the phone today, and he sounds ok, even cheerful, and he says that as long as he stays in bed he doesn't feel too bad. And obviously he's not been allowed out of bed much anyway.

Sigve and Isa in their favorite evening postures:

Today I am grateful for:
*Every day that passes without another bill in the mail
*Delicious yummy crabs

So far so good

Another phone report: Today Sigve's temperature rose to 37,7C/99,8F and it's being monitored closely. A rising temperature can indicate a starting infection, and he'll be put on antibiotics immediately. His immune system is so weak now that an infection is potentially dangerous. But fortunately there are medications to deal with almost anything. He's also starting to feel a slight tongue soreness, which is expected, and it's also expected to spread to the whole mouth.
Otherwise Sigve's feeling well, still optimistic and positive. He has the ability to be grateful for every ray of sunshine that comes through the clouds, for real and figuratively.

Today I am grateful for:
*A mug of delicious creamy latte
*A good book
*People who like my jewelry

Monday, August 16, 2010

Isolation has started

Sigve was feeling noticeably more tired today, and his blood levels were getting close to isolation level. We were told he would definitely be confined on Monday. But he was still allowed to go outside today, so we sat in the sunshine in the roof garden for a while.

One of those "stretch-out-your-arm-and-snap" pictures. It was really hot in the sun, but Sigve was feeling chilly as you can see from his zipped up fleece jacket!

Back on the ward a nurse told us that due to staff capacity they would move Sigve into the isolation room tonight. Sigve thought it was just as well, he wasn't going anywhere, and it didn't matter to him which room he slept in anyway.
I drove home to Bømlo this afternoon, and when I spoke to Sigve around midnight he had settled in in his disinfected room. Everything he took in with him had to be disinfected too. So now we assume that he will stay well until the new stem cells start doing their job. It usually takes 2-3 weeks to build up the immune system to a level where it's safe to be out in the world again.
I'll probably be home for a couple of days before I go back to Bergen.

Today I am grateful for:
*Sigve's optimism
*Sigve's ability to adapt to any situation
*the nurses who take care of him, and nurses in general

Sunday, August 15, 2010

More chemo

Sigve had a visit from Geir Espen and Torstein (from work) today. They drove up from Bømlo in the morning and back this afternoon.
Since Sigve already had company I spent a relaxed day with Brita and Ketil. Ketil was putting down slate tiles on their deck, and Brita and I picked raspberries from the garden. The weather was so beautiful, and I didn't bring any light clothes, so we also went shopping.

Today Sigve got another, scheduled, bag of chemo. I missed that he also got one 24 hours after the transplant. Still no discomfort from it though.
He also got some pills for his diarrhea, and they helped a lot.

The other day I decided that we needed to decorate Hangman somehow, and when I saw the little red heart that you can hang things from, I got this idea. I got Brita to print out 2 pictures of Sigve and me (or is it I?). We laminated them together, and voilá!
It's easy to wipe down and disinfect, so it can go with him into isolation.
I think I have to patent the idea, because all the nurses love it, and Sigve does too.

Here is a close-up of it, and of the picture on the other side.
Feel free to copy the idea, if you ever want to!

Hilde Marie phoned today to tell us that last night Isa started to behave strangely. She was sniffing by their bathroom door, and wouldn't stop, so Hilde Marie let her in. Isa ran straight to the washing machine, where HM was washing a pair of Sigve's jeans! Isa was so disappointed when Sigve wasn't there himself, she sniffed around the room to make sure he wasn't hiding somewhere. Dogs are amazing creatures!

I found these two pictures that I forgot to post right from the beginning. They are from the check-up and info day we had at the hospital in May. Both Gerd and Sigve took lot of blood tests.

They filled up 20 vials from Sigve. It was the most amount of blood the biochemist had ever drawn at one time.

Today I am grateful for:
*Fresh berries, full of natural goodness
*Again: a beautiful warm sunny day, haven't had too many this summer
*Faithful and cute little animals

Saturday, August 14, 2010


I don't have any pictures from today, so I picked this one. I took it on one of our camper trips earlier this summer. Some of you norwegians may know the place. We drove to the end of a valley just after Røldal, before climbing up to Haukeli, then we walked up to this waterfall, and it was only when I saw the pictures on my computer that I saw the natural heart shape. Isn't it cute? See all the love pouring out of it?

Anyway, not much to report today. Gerd left at noon to catch a boat back home. She's still tired, but recovering well. Sigve is still doing well. His blood count is going down, which is what we want. This morning he had to leave his room, along with all his belongings. The room was cleaned and disinfected, and now it's just waiting for him to move back in when he's ready for isolation. In the meantime he's in a regular ward room along with 3 others.
His only discomfort at the moment is some diarrhea, which is energy draining, and he has to drink a lot to replace the fluids. I will speak to a nurse tomorrow if nothing is done about it. But apparently it's common to get it at this stage. But all the same he was up and about most of the day, and didn't lie down until 4 pm when he was hooked up to the Sandimun again. One strange side effect from the Sandimun is a radiating heat in and from the face while the rest of the body can feel cold. I could feel that his face was very warm when I gave him a hug.
After I left Sigve for today I decided to wander about in a shopping mall for a while. I find I need to get the hospital smell out of my nose, and a shoe store did the trick. I love the smell of leather! I also picked up a couple of end-of-sale bargains :-)

Today I am grateful for:
*Gerd's recovery
*My 5 senses: smell, taste, sight, hearing and touching

Thursday, August 12, 2010

Day "+1"

Sigve was admitted on day minus eight, transplant day was day zero, so today is day plus one. Now we count up!

Thank God, Gerd was feeling a whole lot better today. When Hilde Marie and I came up to Sigve's room she was there, knitting away. She had asked for a strong pain killer and a sleeping pill last night, and had slept well and long. She was in a room with 4 beds, and the only disturbance had been when someone got up and fell over in the middle of the night. A big bang and a lot of screaming. Fortunately she was able to take no notice, and go back to sleep.

And the miracles just keep on happening. This morning my eye showed no sign of infection, so I could visit Sigve again.

My only major, but still minor, problem is that the hinges on my MacBook Air broke last night. It still works, as you can see, but I can't close it, so it's inconvenient to carry around. Fortunately it happened while I'm in Bergen, so today I took it to the Mac doctor, he's ordering new parts, and will call me when he gets them. Piece of cake so far.

While I was off to the Mac doctor, Gerd, Hilde Marie and Sigve took a one hour walk outside in fresh air, around the hospital area. So you see Sigve is doing and feeling very well. And as long as he is doing so well, Sigve is only hooked up to Hangman from 4 pm to midnight. From 4 pm -8 pm he gets a medication called Sandimun, to prevent "graft versus host" disease. Usually in a transplant situation, the body has to accept the new organ. In this case, the new stem cells have to accept Sigve. Even though Gerd is a tissue match, the fact that she is female and has given birth makes the match slightly less than 100%, so there may occur anything from a slight (skin rash, inflammation) to a more severe reaction (liver and/or lung failure). Most people get dry and sore mucous membranes, especially in the mouth, making it hard and painful to eat and swallow. He's already getting rinses to prevent this. I'm just mentioning all this in passing as we assume Sigve will get very little of it.
From 8 pm to midnight he gets fluids, and then he's disconnected, so he can sleep freely till morning.

We still don't know when Sigve will have to be confined to isolation. It will happen when his immune system is so low that he has no resistance to infections any more, and he will stay there until the new stem cells have settled and started renewing the immune system. Blood tests are taken every day to monitor just about everything in his blood. This morning they had to draw blood twice because the first time they forgot to label the ampules...

Just before I left him today, a nurse came in to clean and redress Hicky's exit hole. If you're tough enough you can study the picture of it. The nurse laughed when I called it a "Facebook" moment. As you know it's on the right side of his chest.

I told you before that I'm staying at Casa Seime when I'm in Bergen. Brita and Ketil are our very close friends from way back when, actually since 1975. I have a room here and a key, and can come and go as I please, and can totally relax here. A wonderful friendship!

Today I am grateful for
*Good friends
*Preventive medication
*Beautiful sunny weather

Wednesday, August 11, 2010

The transplant

Thank you Gerd!
It is such an amazing thing Gerd has done for Sigve, and therefore also for me. In agreeing to be the donor she has given Sigve the gift of continued life. Without this treatment his life expectancy was reduced to less than 2 years as the disease had started to accelerate. I'm not sure if she knew how much pain and discomfort it would involve for her, it was certainly more than I imagined from hearing about it. I knew before that Gerd is a very strong person, and this has proved it again. There are not enough words in the world to express completely how we feel, but
we will be forever grateful to you Gerd!

After Gerd was done with the harvesting she came up to Sigve's room for dinner.

Producing extra stem cells turned out to be very hard work, and she is exhausted. The pain in her spine and knuckles over the last days has made it difficult to sleep, so that is exhausting too. The doctor decided to keep her on the ward for tonight, and at the hospital hotel for Thursday night to keep an eye on her recovery. Please help us pray for a speedy recovery for her!

Earlier this morning I had noticed an irritation in my left eye. I changed my contact lens, and it went away. But at this point I realized I was probably developing an eye infection. I told the nurse, who took me to a doctor, who decided it was best if I left, and told me to see another doctor in the morning if it hadn't cleared up by then. So there I was, unable to watch the transplant procedure. Fortunately Hilde Marie was there, so I gave her my camera, and left.

Usually when we hear about transplants we think of huge operations, both for the donor and the recipient. Not so in this case. You already know what it involved for Gerd. For Sigve it was just like a blood transfusion. Piece of cake.
First he was hooked up to medications to prevent various possible immediate reactions to the new stem cells, like increased blood pressure, palpitations, shortness of breath, and actually full prophylactic shock, which was very rare, but could happen.
One of Hicky's tubes was used for the actual transfusion, but with a special connection. That meant that Hicky would be completely open, so it had to be attached in sterile conditions, and everyone had to leave the room for a few minutes.

The transfusion was actually very low tech. Usually Hangman has these drip counters attached to him. The tube from the iv bags go through them and a drip speed is set. The counters keep track and administer the medication, or whatever, at the set speed. This technology can't be used for the stem cells, so a nurse had to set the speed manually, count the drops while timing them (by good old fashioned watch) and adjust to the right speed. Quite slowly for the first 15 mins, and then a little faster. The whole thing took 1h 15 mins.

When the procedure started Sigve had a bit of a fever, but 30 minutes into the transfusion the fever was gone. Time to rinse out the mouth to prevent soreness and dryness. He has a small amount of fungus on the tongue, and gets a rinse for that too.

More than half way done.

The bladder keeps doing it's business, transfusion or not, and requires attention.

Gerd overlooked the proceedings and is probably sms'ing someone on the progress:

The nurse responsible for the transplant, she was in the room the whole time:

Almost all gone, good boy, finished the lot!
After the transfusion was over, Sigve was offered supper, and all of a sudden his appetite was back, and he felt great.

There are a lot of side effects and complications that can occur, both from the transplant and all the medication he will be getting in the coming weeks, but we stay optimistic and expect everything to continue to go as well as it has started.

We were told that it's quite common for transplantees (I think I invented that word, can't find it in the dictionary, but you know who I mean) to consider the day of their transplant as their new birthday from the on. Sigve decided that from now on he will be celebrating both Aug. 11, and Oct 14, and will be expecting presents on both day!
Over the course of the next year Sigve's blood type will change from his old type O to Gerd's type B. Isn't it amazing that that's possible? We're wondering about what other qualities he'll get from her, maybe he'll start knitting?

It has been a very satisfying day :-)

Today I am grateful for:
*Modern medical technology (and some old fashioned)
*All the prayers, happy thoughts, positive energy, good wishes, warm hugs and blessings that all you wonderful friends out there are sending us. You carry us through this, and it works!

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